Rants
A collection of my gripes, reflections and musings about fibromyalgia
and other subjects
| Click here to find out how a friend inspired me |
Part I,
Pre-Diagnosis: 1997-2000
Portions of my journal entries from shortly after my mother's death
until I finally got a name for my mysterious illness
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May 5, 1997 5:30am |
Can't sleep. Mom died one week ago, and today would have been her seventh wedding anniversary. I feel as though my life were in the Oklahoma City bombing (the trial must be what put the thought in my mind). In my half-dream state, I've tried to reconstruct myself, but I can mainly only grasp tiny jagged pieces and hold them together with some crude Elmer's glue of sorrow and pain. I was lying in bed, actually trying to physically hold myself together to ward off the sensation of falling apart. In the past, with my complete lack of spiritual support, I would borrow some masculine notion of binding myself together with non-emotional duct tape and say, "I'm all better now." Sure, I'd be mobile again, but who'd be able to see the real me under all that thick tape? I pray I'll not do that again. Spiritually, I must admit I need help finding the necessary fragments and setting them back carefully where they belong. I also have to remind myself that too much glue will not dry clearly. Also, Elmer's glue is water soluble, so my tears may very well wash it away and I'll have to start over. I don't yet know the true components of permanent, healthy epoxy. I tremble a lot. It's like aftershocks. I suppose it's a physical manifestation of my mental instability. But how much adrenaline can one person have? I've got to wear it out eventually. Maybe it's a Cowardly Lion kind of thing. It's weird. I can understand that there's a void now, but I didn't expect it to feel quite so physical. I get the sensation that parts of me are invisible now, still there, but I just can't see them properly. Perhaps I was wrong last Monday when I told Dan that the hard part was over. . . . It's all unbelievably irrational on my part. I have disturbing dreams. Not a few, but a whole parade of them with recurring themes and images. Yesterday, I couldn't shake the idea that I had to take a picture of my mom's empty blue recliner. It seemed important that I carry around some physical reminder lest I forget that the chair truly is empty. In my dreams, I am expected to take some action or begin some procedure to change (subtle change) the physical items surrounding the chair, maybe reclining the chair or even having a person in any new photograph I would take. I am supposed to document the changes with new photographs over the course of months or years. The problem is, I have no idea how to start this procedure properly. I have no guide, no one to help me, and I'm the only one who is supposed to do it. Why did these dreams seem so significant? I understand the symbolism but not why they seemed so real. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 5, 1997 midnight |
Finally got to sleep after at least another half hour had passed. Almost drowning out the sound of chirping birds and Dan's breathing was the tinnitus in my ears, which had elevated to the sound of the Emergency Broadcast System. Didn't feel like a test this time. My stomach tried to compensate for the emptiness I felt by devouring itself. Made the mistake of thinking I was strong enough to return to work today. After an hour, it was clear I was not going to be able to pull myself together enough to remember what I was being taught. . . . Tomorrow is the interment; don't know if I'm ready . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 10,1997 8:30pm |
Tomorrow is Mother's Day. Do most people who still have their mothers realize how lucky they are? I suppose not. . . . It was hard to get going again today. I seem to get weighed down by remnants of bad dreams and the tossings and turnings of the night. Most of my dreams–good, bad or neutral–are trying to prepare me for that which has already happened. I would welcome some messages from my subconscious regarding the preparation for at least the present. Even better, a simple, unperturbed night's sleep. My last entry proved slightly prophetic. Tuesday was the hardest day of my life. . . .I kept staring at the space in the wall where the urn was to go, a sight more real and painful than any so far. The finality of what we were about to do jarred me like a jackhammer so that I literally shook. When they put the urn inside and replaced the black marble front of the wall, I cried even harder. I had brought a single yellow rose to put in the vase on the wall, but I had to be assisted in doing so because I was crying so hard and shaking. Everyone came to my aid, saying, "It's ok." I responded, "Yes, IT'S ok, but I'm not." . . . This business of grieving is unlike anything I've ever before experienced, at least grieving of this magnitude. I expected it to just be another form of the depression from which I have suffered for the last 20 years. I even tried to treat it that way at first. This is no mere illness, though, physical or mental. When I am depressed, sleep is a refuge, a haven where I hide from the world. Now my sleep is every bit as troubled as my waking life, perhaps more so. Depression drains my physical energy so that I must force my every agonizing action. Grief also prevents me from much activity, but only because my concentration is what has been drained from me. Action is now possible but much less necessary to my self-esteem. Depression and grief are both forms of tunnel-vision, but with depression there is no beauty at all, whereas with grief, there is beauty amongst the sadness and pain. Grief is natural and universal and temporary. Depression is select, and, for me, permanent–an illness to try to manage. With depression comes the sensation that the world has sped past you; I've caught myself daydreaming, the space into which I've been staring blurred, and when I check the clock, minutes or hours have passed. When I'm grieving I find that my narrow vision seems to have a sharper than usual focus, as though I'm not only staring at something but actually through it. The clock seems to slow or even stop. With depression, everything is important and overwhelming and demanding my action. Grief shows me that very little is important enough to waste frivolous energy on. Grief can be learned from, while depression must be recovered from. Not that I ever wish to be bereaved again, but I have to admit I prefer being a painful part of the life/death cycle over being so depressed as to not be a part of anything. . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 11, 1997 9pm |
It's a tossup–which day is tougher, Tuesday or today? And how much more emotionally drained can one be and still be conscious? And when do I get a full night's rest? I can only answer with a sigh. Finally nodded off at 3:30, only to leap awake with my conscious shouting the time; 5:43. I've since forgotten the significance of the time–perhaps related to yet another dream? VERY tough to get going when the alarm went off at 8am. . . . Now, I'm so emotionally exhausted, I haven't the energy to go to bed. I've managed to resist the temptations of chocolate, alcohol and hiding forever under the covers. I've no solutions whatsoever. I guess I'll ask Dan if he'll hold me some more and go from there. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 16, 1997 2pm |
. . . . Wednesday night, I had a dream that everywhere I went, I saw pink roses, the same ones that were on Mom's casket. In the dream, I was thinking that the flowers were lovely and somewhat comforting in their presence, but also an overwhelming reminder of loss. I guess the dream told me that memories of my mom will be with me wherever I go. Then, last night, a darker dream–I was at work, putting ads together on the Mac, and every ad contained a picture of dead flowers. Apparently I'm lumping together stress from work with stress from my private life. Obviously, my now-calmer demeanor belies the fact that inside, I'm still overwhelmed. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 17, 1997 2:30pm |
Don't feel like doing ANYTHING. Have lots of moments and/or days like this. Got a slightly better night of sleep last night–only woke up two or three times. Mentally EXHAUSTED, however–will this end eventually? Hope so, because work is a monumental chore–I wear out so easily now. Doesn't help that my body is trying to get sick–I've managed to fight it off with vitamin and herb supplements so far. Trying to start doing a few physical well-being steps–went to the chiropractor to help fix the injuries I received catching Mom as she passed out the weekend before she died. Hope also to ease stress and injury-related tightness, perhaps by getting a professional massage. In addition, EASING into stretches and exercise–no more injuries caused by rushing into things! Eventually, of course, dietary concerns–Weight Watchers in the wings. Hoping also that going to South Dakota for Dan's friend's wedding in two weeks will help–maybe getting out of my current physical environment for a few days will increase the liklihood of getting some REST. . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 20, 1997 2am |
. . . . Still no real sleep. Made an appointment with the hospice's grief counselor–don't know if I really need it, but I doubt it would hurt. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 21, 1997 2am |
Awful dream last night. In it, I called [my stepfather] on a pay phone to see how he was doing, and my mom answered. I knew that it was impossible, but I was afraid to say to her that she was supposed to be dead for fear she would disappear. So I made polite chit chat while inwardly wondering if I'd lost my mind. Lisa was with me, so I told her about it. She and I agreed we should go to the house and check it out. We got there and Mom was waiting, just as if she'd never had cancer. I was so happy to see and talk with her! But then Lisa told me she couldn't see or hear Mom, so then I knew it was true that my senses were fooling me. Mom was still dead, and I had clearly lost it. Lisa left just as [my stepfather] and a few others arrived. After awhile, the skies grew dark, and a tornado developed. Everyone was heading downstairs to safety, but when I got down there and looked around, Mom wasn't with us. I ran back upstairs, found Mom and pleaded with her to come down with me before it was too late. The storm hit just then, and debris was everywhere. A huge beam hit me in the back and pinned me flat. The next thing I know, I'm in the hospital with a broken back, all because I tried to save a phantom. I was disabled, motherless and crazy. How depressing. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 22, 1997 3am |
Zilcho sleep. Argh. Feel that if I got any more tired, I'd be comatose. Went to see the hospice grief counselor today. I really like her. MUCH more understanding than the shrinks I've been to. Helped more than I thought it would–seems to make a difference to occasionally discuss one's woes with someone not personally involved in your life. Told me that my reactions to the current situation are by and large normal. Gave me a few handouts and a newsletter detailing various support groups. I left feeling utterly exhausted, as if I'd been staggering around under a whole mountain of troubles that I finally got to set down. I do plan on going back. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 25, 1997 2am |
Some improvement. The counseling session was surprisingly helpful. Woke up Friday with some mental and physical energy in spite of little sleep. Still exhausted, but concentration required slightly less effort than before. Was able to work two hours of overtime without the overwhelming strain I suffered the previous Friday. The real test, though, was working a sixth day yesterday. Dreamed last night that Lisa, Mom and I were driving across the country in an absolutely huge car. Mom was behind the wheel, Lisa on the passenger side and I lounging around in the back seat. Eventually, though, I became aware that Mom had probably been driving about 12 hours straight, and, even though I didn't want to, I figured that as an adult, it was my duty to offer to take my turn. Mom got in the back to rest, and I got behind the wheel. But as effortless as Mom had made driving seem, I had a terrible time with it. The steering wheel was huge, hard to turn and difficult to control. I had a rough time seeing over the top of the steering wheel. Sun glare blinded me. I hit curbs and sometimes ran off the road completely. I just knew I was going to wreck the car. Then the phone rang and woke me up. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 29, 1997 9:30pm |
Yesterday was one month. Kept so busy with packing to go to South Dakota that I didn't think too heavily on it, yet because of the date, it was incredibly hard to concentrate on packing. Did manage to get it all done just barely on time with just barely enough energy to finish and go to work. Happy to be getting out of town for Dan's best friend's wedding; I think I'm ready to join in a celebration of this type. Unfortunately, though, the stresses that go with preparing for travelling and attending even such a joyous occasion as this put me at the maximum tension level. I think it will be worth it nevertheless. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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June 1, 1997 2pm |
Only woke up once last night. First time that's happened since about February. Now if I can only get to the all-night-through level, I won't need any sleep medication. . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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June 8, 1997 9pm |
Exhaustion has returned. Haven't had another good night's sleep since that one a week ago. Thank God Dan and I got a few enjoyable days off; at least I got a brief break from the fatigue. Surprised at how intense it is, especially since I only worked four uneventful shifts this week. Still tire as easily as I did weeks ago. Still plagued by vivid dreams of all varieties, some starring my mom and some featuring my dog (I guess because I miss him too). Time either crawls along or stops, especially when I'm at work or unsuccessfully trying to sleep. . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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June 16, 1997 2am |
Haven't written in awhile–everything's so jumbled up that it's difficult to sort it out and write it down. I guess the predominant feature of my current mental state is confusion. I still deal with bouts of not wanting to do anything, but now they're out numbered by periods of desperately wanting to do something in order to feel useful, yet having no idea what action is best at this time. I simply cannot figure out what to do with myself. I struggle through the workweek, hoping for relief from the exhaustion and lack of accomplishment, then when the weekend finally arrives, I feel so lost and lonely that I don't want to do any of the projects I've planned. I'm at a loss as to how to make it better. Now I crawl through the weekends too, maybe making one phone call, tidying one room, writing one letter with monumental effort the whole two days. And when I do accomplish something, the jubilant feeling I experience lasts very briefly, immediately followed by bottoming out emotionally. A nasty mix of apathy, anger, sadness and lonliness takes over and pervades everything. Any energy I may have had drains as though through a sieve. It gets so that I'm nearly afraid to have any good times because I may fall into such a pit afterward. I wish I knew how to break the cycle. I feel like a fox with its foot caught in a trap, going around and around in circles. Sleep is fitful, and the dreams are still weird. At least last night's wasn't a bad one. I dreamed that Mom, Lisa and I threw a "Marsha, Marsha, Marsha" party–a party celebrating the '70's and Marsha Brady of "The Brady Bunch". I wore a lime green pantsuit, platform shoes, and I did my hair like Jaclyn Smith in "Charlie's Angels". A lot of people who had been friends of the family in the '70's were at the party as well as some more recent friends.The best part was that Mom was having a great time. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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June 17, 1997 2am |
Another mostly sleepless night last night. Went to sleep after 4am, woke up at 6am, in and out of shallow, frequently-interrupted sleep until I finally gave up at noon. An all-too-common scenario. I have been making some subtle changes to try to improve my physical well-being. I started doing stretches regularly after we got back from South Dakota. I started swimming at the health club on Thursday. And I'm considering Weight Watchers soon, perhaps next week. I also plan to visit the chiropractor and massage therapist as needed. Speaking of therapists, I have an appointment with the hospice grief counselor tomorrow. Hope it helps as much as the last session did. Perhaps I'll be able to make progress on overcoming this exhaustion and confusion thing. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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July 23, 1997 midnight |
. . . . I'm home from work because I'm sick. I don't know if it's the flu, my period, self-inflicted or what. All I know is that I've been nauseous off and on since last night, and I'm weak and mentally beyond exhaustion. VERY frustrating, especially since I've been trying so hard to be physically healthy as of late. I've been going to Weight Watchers for a month and have lost seven pounds so far. I'm swimming 15 laps three days a week. I've been taking an herbal supplement from time to time to help with sleep. It doesn't keep me from waking up several times a night, but it does keep me sleepy enough to doze back off again. So when I threw up and realized I was going to miss yet ANOTHER day of work due to circumstances beyond my control, I just lost it. All the little things I'd been trying to dismiss as unimportant piled on top of me, and I sobbed in collapse. I felt completely ineffectual as a person in spite of my efforts. Sometimes I wonder if I'm EVER going to have a healthy balance in my life . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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July 29, 1997 3am |
A roller coaster kind of day. Lost two pounds this week–a few more, and I'll be able to fit into my wedding ring again. Disagreeable time at work–one of my supervisors was again abusing his power by turning my job into a personality contest. I of course took this much harder than I would have if the rest of my world were running smoothly. The lonliness I've endured the past few weeks has faded, but other emotions have become stronger to make up for it. The primary feeling is one of bottomless sadness punctuated with anger and frustration competing with exhaustion. These seem to be both non-specific and all-encompassing, usually quite a bit more than the situation calls for. I'm amazed with how easily I go over the edge; it's actually gotten worse over the past two weeks or so. I really am trying to get my sh*t together, but it doesn't seem to help much. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 8, 1997 2:30pm |
Writing at the hair salon. Have had little or no time. As I was just beginning to get a handle on coping with Mom's loss, I was thrown into another kind of crisis, one less severe but devastating nevertheless because I'm not yet strong enough to take on more. [My stepfather] and Lisa got into a fight, a major one and possibly one that will end their relationship. Last Friday, I found out that [he] is having someone move in at the end of the month and wants all of Lisa's, Mom's and my stuff out of the house by then. I can't believe he'd want to take over my childhood home only three months after my mom's death. I find it monumentally upsetting that he expects Lisa and me to rush through our grief for his convenience. Why doesn't he sell the house? If he wants to make a fresh start with someone new, I'd rather have Mom's home gone completely than have [my stepfather] sharing it with someone else. Lisa and I grew up there, buried our family pets in the back yard, had most of our important family gatherings there, and watched Mom live and die there. It's not [my stepfather's] place to rob us of our childhood memory and Mom's memory site. It was extremely difficult going through Mom's things at my own pace. It's now like boxing up the most important part of my life on someone else's whim. My mental health has been put in jeopardy just because [my stepfather] thinks he's found a quick, easy solution to his pain. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 11, 1997 8pm |
Didn't finish my last entry, but no matter, because I already have an update on it. On Saturday, Dan and I went over to pack up Mom's stuff. We were met at the driveway by [my stepfather], who bluntly announced he's getting married! I was shocked speechless! If that weren't enough, his fiancee (whom he didn't bother to introduce or even name) was peeking at us from behind the door to the garage. I managed to stammer that I was glad he met someone but that I wished he'd make a new start by selling the house. He gave some lame financial excuse, completely bogus because he earns more than Dan and I combined. While I was standing there, Lisa arrived with [a friend] to help pack the china. [My stepfather] took her aside while the rest of us went in to get started. The woman had disappeared, but there was a huge black dog (a Bouvier des Flanders???) on the steps. Wondering what they'd done with Barney, I checked the back yard and saw that he was confined there because the two dogs didn't get along. I went back to the living room and noticed the woman was in one of the bedrooms, trying to pretend she couldn't see or hear me. Had we been in a less emotionally charged location and situation, I would have introduced myself. But since I was so intensely upset that I was shaking, I decided to pretend I couldn't see or hear her either. I was actually afraid I was going to have a breakdown right then and there. I tried to calm myself by talking with [my friend] and keeping my hands busy with sorting through a bookcase drawer. Somehow I managed to get through the the drawer contents and the bedroom closet where Mom's hand-made Christmas ornaments were without either exploding or imploding. Then, the last straw–[my stepfather] came into the kitchen and asked Lisa and me if either of us wanted Billie, the parrakeet Mom had named after her best friend who died last year. Realizing at last that he actually intended to get rid of absolutely EVERYTHING that Mom loved, I lost it. I was sobbing so hard I couldn't even answer him. After waiting a few minutes and realizing that I wasn't going to be able to collect myself any time soon, he mumbled something about leaving to get something to eat and took off with his fiancee. Dad and [my stepmother] showed up about 15 minutes later with their van so we could load everything up and get it out of there. We took all the boxes over to Lisa's and put them into her basement where they could be sorted through in more detail at our leisure. After we unloaded everything, I sat on Lisa's couch and cried some more. Once I'd finally collected myself again, we went to a little Italian restaurant for some supper and then I finally dragged my way-beyond-exhausted butt back home. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 18, 1997 2:30pm |
At the dentist's office, of all places–I've decided to write wherever I can find a few spare minutes. I'm tired and cranky–have been much of the past week. I guess I left off with the day we cleaned out Mom's house for good and indirectly met [my stepfather's] fiancee. After I got home that night, I opened a bottle of wine and proceeded to write [my stepfather] a letter about my true feelings on the situation. I had trouble at first sorting it all out and getting it coherently on paper, but I managed to get a few pages done before I went to bed. I got up the next day and finished off both the wine and the letter . . . I dropped off the original in the mailbox at Mom's house. That was eight days ago, and [my stepfather] has of course made absolutely no reply. The thought that [my stepfather] was taking over the family home in such a callous way bothered me incredibly, much more than I ever expected. I finally decided that I owed it to Mom to see if there was anything I could do legally about it. Even though it appears [my stepfather] can pretty much do whatever he da*ned well pleases, I have an appointment with a law firm on Wednesday just to make sure. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 19, 1997 8:30pm |
Writing from work. Seems my downtrodden mental condition has contributed to new physical problems. Went in on Thursday for my yearly exam and was told that I have a urinary tract infection which is causing (in part, at least) the enormous fatigue I've been experiencing. Also, blood tests show abnormal liver function levels and high cholesterol. A visit to the dentist yesterday revealed a gum infection–I get one every time I'm severely stressed. Yippee. Went back to the doctor today to see if the medicine she prescribed for the urinary infection was doing any good–it appears to be working. The fatigue, however, is exactly the same. I might be upping my dosage of Paxil if the shrink who prescribed it agrees. I'll be seeing him on Friday. There have been SOME positive things I've done for myself during this burdensome time: I've lost 15 pounds thanks to Weight Watchers, I've gone to the hospice grief counselor and now may join a support group, and have made a very helpful visit to a massage therapist and am going again Thursday. Still troublesome–LACK OF SLEEP. Am having nightmares now featuring [my stepfather's] snakes. Usually they're blocking me from doing something important to me. Mom also appears almost every night, sometimes innocuous, sometimes menacing, sometimes healthy, sometimes about to die for a second time. I guess the most common theme in my life right now is the urge to HIDE, to sleep for weeks on end in a quiet place. Sigh. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 20, 1997 4:30pm |
Writing on the way to work. Went with Lisa and Dan today to see a lawyer about Mom's house. Seems it really is [my stepfather's] now to do with as he pleases. The best option at this point would be to ask him if he'd be willng to sign a document stating that upon his death, the house goes to Lisa and me. He could live in it as he pleased but couldn't sell it without our consent. Lisa says she'll talk to him about it . . . . Mom worked so hard making payments and hanging onto it that it would truly be a shame to lose it. Even though I pretty much knew what response I would get from the lawyer, it was still very disappointing to hear it. I'm depressed, but at least I have an answer. I'll just have to accept facts, grim though they are, and move on. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 23, 1997 2:30pm |
Writing in the car . . . . Incredibly late start, but I figure that I'd rather leave late and rested than early and exhausted. We'll be staying at the hot springs spa courtesy of a gift certificate given to us by some friends from work for a wedding present. How Dan and I needed to get out of town! Went to the massage therapist Thursday. I've been so stressed out that everything above my neck is one giant knot including my jaw and ears. It took most of the hour I was there just to get me to relax. I only loosened up a little bit, so I'm going back on Tuesday to work on it some more. One good thing–even though my muscles are still tense, my ATTITUDE is more relaxed . . . . Went to the pyschiatrist yesterday. He said that increasing my dose of Paxil would help with my grief-related depression, but it would also make my sleep trouble worse, and I certainly don't want that. His solution was to prescribe a low dose of another anti-depressant to be taken in conjunction with the Paxil. The second drug (whose name for the moment escapes me) will probably have the added benefit of making me drowsy, so I'm to take it at bedtime. I took a half pill last night–I still woke several times, but I fell back asleep immediately each time. I do feel a bit different–a sensation of slightly lessened mental tension that comes and goes. Not bad. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 24, 1997 noon |
. . . . Soaking in the Hot Springs pools last night . . . . was wonderful. We were there for about an hour and a half. Dan gave me a shoulder rub while I sat in the therapy pool. For the first time in I don't know how long, I managed to get everything below the neck relaxed. Gazing overhead at the stars also got me another step closer to decreasing the tension in my head and neck . . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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September 29, 1997 10:30am |
I'm at the doctor's office again. I've got the sinus infection again. I'm missing work again. Argh! I'm so disgusted with myself! Can't seem to stay healthy for more than 10 minutes anymore . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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September 30, 1997 2:30pm |
The doctor's verdict was severe ear infection. I'm to stay home until at least Thursday. My timing is truly sh*tty. Great news in the middle of everything else–Dan and I may become homeowners sooner than we though possible. We had believed it would be next summer before we'd be able to afford a home of our own. It had become even more important to me than before since [my stepfather] shut me off from Mom's house, my previous home base. So when Dan found an ad for a grand opening on a brand new development of economy houses, we decided to take a look. We visited the models . . . on Saturday. Even the most expensive one was in our price range . . . . The interiors were beautiful; the models were both modern enough for Dan and practical enough for me. The structural integrity, energy efficiency, warranties and use of available space impressed the h*ll out of me–these were features I'd only seen on homes costing tens of thousands more. We decided on a model with a bonus room option in addition to three bedrooms for a total of 1600 square feet . . . . I called a mortgage lender for pre-qualification; I'm awaiting an answer right now. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 1, 1997 7pm |
Woo hoo! Dan and I are pre-approved on a home loan! The lender is sending a letter to the manager of the housing development. I'll call the manager tomorrow to set up a time to put together a contract. I'm completely amazed that we're going to get this opportunity. I think Mom would be pleased–I wish I could call her and tell her all about it . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 2, 1997 1am |
Strange but wonderful turn of events tonight. I'd had an urge to find out just how alike Mom and I were, so I grabbed one of her diaries. This had entries from 1961-1970. I was quite surprised to find that some of her phrases, descriptions and perceptions were identical to mine. To confirm it, I read from one of my own diaries. Did Mom know we were so very much alike? I think maybe on some level she did. I lay in bed for awhile, trying to nap but with limited success. I was trying to decided whether to stay in bed or get up when suddenly I got a sensation of an angel by my side, letting me know that I would be all right. I've never had an experience like that before, but I immediately felt a little healthier and a lot more hopeful. Right now, I'm in the process of cleaning myself up (shower, facial mask, shaving, nails) and pondering what it all means. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 29, 1997 4pm |
Yesterday was six months. Had been feeling remarkably well following our safe (but late) return from vacation Sunday night. Unfortunately, that feeling wore off when the time change caught up with me after lunch at work. It didn't help when I discovered I was out of Trazodone at 2am. Still, I got up yesterday with a determination to jump into my schedule with renewed enthusiasm. Before I went to Weight Watchers, I got my prescription filled but figured I would wait until my usual time to take my pill because it knocks me out too much to take it before the end of the day . . . . I went to the cemetery after Weight Watchers . . . . In the vase at the niche was a silk arrangement with little pink and white roses and little silk birds. It made me think of the bird my mom named after her best friend who died and how [my stepfather] wanted to give the bird away, and it made me cry. I started thinking that the 28th of next month will be the day after my first Thanksgiving without Mom and that I'm only halfway through my first motherless year; sadness went through me like a jackhammer . . . . I drove to the park . . . . to eat some lunch I'd brought with me. The park was where [my stepfather] and I brought Mom the week before she died. We'd wheeled her around so she could see the ducks and the people and their dogs. We couldn't go very far or stay very long, but I think that was the last time she was ever outside. Lonliness surged as I thought about these things and ruled the tone of my feeling for the rest of the day. That night at work, between the missed dose of Trazodone and being upset in general, I got so nauseous that I had to beg off. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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November 10, 1997 7pm |
Check-in time emotionally. Apparently I look like I'm in better shape than I was–several people have commented. And in some ways, I AM better, but not as recovered as I appear. My memory is still poor but slightly improved from time to time; I am actually able to concentrate occasionally for short periods of time. I do sleep now, thanks to drugs, but I tire very easily even when I'm rested. I still have nightmares, but they're either less scary or I've gotten used to them, I'm not sure which. Mood swings are still a problem, and even healthy grief work still exhausts me. I'm less likely to be overwhelmed by fifty conflicting emotions at once, but that has been replaced by less complicated yet incredibly more intense feelings. Mostly, I am just sad, but it is by far the deepest sorrow I've ever experienced, like a natural well with no end. The depression is somewhat managable, again thanks to drugs, but I cannot completely remove myself from my sadness no matter how hard I try. I still haven't made it back to church but will try for this weekend. I've stopped what little exercise I was doing–lack of time and motivation have been a serious problem. My weight loss is at a standstill because my cravings have returned with a vengeance; I feel powerless to control myself. I guess my goal for the holiday season will simply be to not gain back any ot the 20 pounds I've lost; I feel that progress beyond that may be too much to expect. I still hope in time to do more to help others; I have at least done a few things that may be mutually helpful. I have answered two requests for pen pals advertised in the "Motherless Daughters" newsletter. I spend a few minutes a couple of days a week talking with the proofreader on the day shift whose wife died last month; I see how he's doing, and I've given him a couple of articles to read that have helped me. . . . . I guess the best I can do is keep everything simple, planning ahead to minimize upsets. I predict that when January rolls around, I'll see a more permanent upside to life. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 6, 1998 10:30am |
Wow. I severely underestimated the turn of events that kept me from writing for so long. I mean, I have written nothing aside from a few letters–I didn't even finish the poem I was writing on Veteran's Day. Part of it was physical–repetitive motion syndrome in both hands and wrists . . . .Part of it was mental–too much fatigue to scrawl down what I was feeling, and the depression nearly did me in. I've also been incredibly busy–we moved into our new house March 21st! . . . As for my emotional life, I wish I could say I've been well. November and December were hell mentally–I teetered on the edge of breakdown and a few times crossed the edge slightly. Work was difficult and sometimes impossible. My weight increased–I couldn't make myself stay on the Weight Watchers program. I missed Mom like crazy, my exhaustion at times completely wiped me out, and some of the things I read in Mom's writings were terribly hard to take. I tried to get help but was informed that my insurance was changing to a new company at the end of the year, and no one would take me on as a new patient before January 1st. I survived somehow and finally got in to see somebody at the end of that month. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 23, 1998 10am |
As if I didn't have enough hampering me, now I'm disabled enough to not be able to work at all. On Wednesday the 1st, I got a horrible pain in my head that lasted for about five minutes. When that subsided, it was replaced by a general ache that got worse and worse. By Thursday night, I was vomiting at work from the pain. I made an appointment to see a doctor. By the time I got there, my right side was shaking noticeably. I had some blood work and a CT scan and was given some migraine medicine. The medication didn't completely stop the headaches, though, and by the time I finished the last entry, it was as bad as ever. More doctors and many more tests later–nothing completely got rid of it, and on April 8th, I had the worst headache yet. I started to stutter, I had trouble focusing, my balance and depth perception were off, and I had all kinds of weird sensations on my right side. More tests, and they knocked me out with narcotics–still it came back. Finally, on the 14th, I went to a neurologist. Her diagnosis was migraine-related stroke and intractable (recurrent) migraine, but I'm still undergoing tests to make sure it's not something else. I haven't been able to work since the stroke, and the estimate for a return is about a month. It's enormously frustrating– it's hard to speak, to write, to think, to remember anything recent, to walk around, to be in the sun or in the car. I guess now I have a tiny glimpse of what Mom had to go through. Picking up where I left off in the last entry (best I can)–I went to a therapist in late January and early February. She suggested I change anti-depressants. I went on Prozac, which had horrible side effects at first . . . . . The rest of February I spent adjusting to Prozac and getting ready to move. We closed on March 16th, and all went smoothly. We moved on Saturday the 21st with lots of help. I was still having trouble being as organized as I would have liked, but Marty, Lisa, Dad, [my stepmother] and Dan's parents were able to fill in the gaps and take over when necessary (and even when not necessary). The next day was my birthday, and I pretty much took it easy. My dad took all of us to [a restaurant], which was really nice. In spite of how wonderful everyone was, though, I missed Mom terribly. It was hard to make myself believe that she would never make me dinner and a fantastic cake at her house again or that I would never receive any more of her special presents. I missed the fact that she would get me both a funny card and a sweet card and that she wasn't going to get to see my new house. I guess that my first birthday without Mom was bound to be the hardest. Well, only five more days until the first anniversary of Mom's death. I wish I could do something special, but I'm in too much pain to organize anything . . . . With all the time I must spend at home now, I'm trying in bits and pieces to unpack. I'm down to one last room–the one where I will keep my books, family things and my momentos. It's tough because I'm constantly finding unexpected reminders of Mom in addition to the expected ones. Some nights I go to bed happy I've gotten to see these things, and other times I just go to bed depressed. I think I'll probably feel a little better once I've found a place for everything instead of everything all over the place. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 28, 1998 7:30pm |
One year today. Went to the cemetery and read the material on the preceding pages aloud . . . I found that if I read quietly in a relaxed way, I didn't stutter as much. As encouraged as I was by that, I was disheartened to see all the mistakes I had made last night when I copied all the quotes into the book. I found it upsetting that I had messed up even this simplest tribute to Mom . . . . It seems impossible that it has only been a year. Time hardly seemed to move at all. I think my mind has aged a decade . . . . I've been enormously sad all day, but thought I was doing reasonably well (after a breakdown last night) until I saw a Mother's Day ad on TV tonight. I just dissolved. I have an enormous dread of Mother's Day this year. It's worse than last year because I think I was still in shock then. Every time I see the signs in the stores, ads on TV, or catalogs in the mail featuring special Mother's Day gifts, I feel incredibly hopeless and on the edge of tears. I know I ought to be compassionate and try to help others (especially Dan's mother, who lost her own mom this year), but I'm overwhelmed with this compelling urge to run away . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 5, 1998 11am |
At the neurologist's office, waiting to see what, if anything, can be done for these headaches and stroke symptoms. I wonder if I'll be going to work anytime soon? Probably not, as my condition appears not to have changed. Today would have been Mom's wedding anniversary. Wonder if [my stepfather] has remarried already, and if he is, does today mean anything to him? And if it doesn't, does Mom care, or even think about such htings anymore? I miss Barney. Hope he wasn't send to the pound just because he and [my stepfather's] new lady's dog didn't get along . . . Still dream of Mom, although not always every night anymore. The tone of the dreams has gradually changed. In some, Mom is just one of a cast of characters appearing in the dream–not out of place at all. In others, she's a welcome sight–many of those dreams are set in the past. The remainder, though, are still nightmares, usually a scenario where we're having a terrible fight, the most memorable one being a recurring theme where I accuse her of haunting me and demand that she go away and leave me alone for good. She turns to go, and I'm instantly sorry and fear that I've caused her (and possibly myself) irreparable harm. This one is so powerful that the guilt and the belief that I may never see Mom again in my dreams stay with me sometimes days after I've awakened. I suppose it's motivated by some weird concept of respect. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 6, 1998 5pm |
I'm so frustrated! It appears likely I'll miss another month of work. I have a new medication, a nasal spray. It did help for awhile, but the headache returned as strong as ever. The neurologist is having me double my dose of blood thinners and try a combination of the spray and the migraine medicine I have been taking. If no improvement in two weeks, another MRI and more tests, including some to determine how much memory I've lost. The worst part is that the neurologist is less confident than before that these stroke symptoms will go away. I wish I could call Mom and tell her all this and unburden myself to her. She wasn't a great nurse, but she tried (and usually succeeded) to cheer me up. She always knew how to get us to laugh in situations like this . . . Went to the bereavement support group today. It was a bit difficult because of the headache and trouble speaking, but the need to be with others having trouble was stronger. I've been thinking again about contacting the Motherless Daughters support group . . . . Probably when I'm better. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 11, 1998 12:30am |
I believe I have lost my mind. I can't make sense out of anything anymore. I can't tell if this pain is an invention of mine, and if it is, what purpose does it serve? I'm tired of honest emotion. I'd like to go back to the way I was raised, to "go on" with my life, to be brave and not feel anything, or at least be able to not show it. I love Dan immensely and know I am a lucky person, but I would not mind if I would just die right now. Mother's Day was yesterday. I went to the cemetery briefly and was ok, but then I read an article in the paper with readers' stories about when they knew their monthers loved them and some were so surprisingly touching and sad that I ached with missing Mom. Then Dan, Lisa and I went to . . . .the casino. I liked playing the slot machines, something that Mom enjoyed so much, even though I lost $60. It was worth the feeling of having my head in a vise. I came home and worked on sorting out the coin collection even though I was exhausted. I awoke this morning feeling like I had fallen into a monstrous crater with no exit. I didn't want to do anything, and, for the most part, I haven't. I've been sullen and confused all day, wondering why, even though my head doesn't hurt that much, I still feel horrible. It's like a hopeless hangover when one didn't have the pleasure of drinking the night before. I had one encouraging moment–I'd been thinking particularly dark thoughts, and I went to the window to see if it was raining yet, and a butterfly went right by the front porch. Even that, though, could not rescue me from a mind as murky as a mud pit. I somehow have lost my sense of amusement and hope. No amount of trying can get me to see my way clear to optimism. This headache and "stroke" sh*t–did I bring it on myself? Is it possible that I was so overwhelmed by grief and the roller coaster of occurrences of the last few years that my brain finally screamed "time out"? All the myriad of tests I underwent showed nothing wrong. I can't even tell if the medication is working or if I'm just not. I'm miserable either way. Dan's home, poor thing. I hope he knows what he's in for. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 12, 1998 7pm |
. . . . I wish to h*ll I could call Mom. Her voice could be so comforting. I'd give practically anything to hear her laugh. How on earth did Mom cope with her cancer so well? I must have been a hundred times more painful than my headaches. She was so rational about it, and here I am in tearful hysterics about something that probably isn't even real. She didn't even think she was being brave, but she was John Wayne to my quivering pile of jelly. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 25, 1998 3pm |
Memorial Day. Seems like everything's complicated with my mysterious affliction. Found the quotes in a book that [my friend] gave me for my birthday last year. I read all the way through it then and again last night. I was having trouble understanding some of it last night; I had no such trouble a year ago . . . . I was so drained of energy that the cemetery visit was a physical as well as a mental strain . . . . The neurologist scheduled me for another MRI on Wednesday, but the insurance company doesn't want to cover it since all my other tests came up completely normal. I can see their point, I suppose, but I haven't found any clear signs of improvement since I doubled up on the blood thinners, and, in some ways, I think I may be worse, so I think another MRI is worth a try. I've heard too many true stories of people who had a brain tumor that the first series of tests missed. Maybe there's something there now that wasn't on April 10th when the first one was done. It's hard to say since all my symptoms are so subjective. For this reason (and because I'm impatient and curious), I went to the [book store] to see if there were any books that might explain a condition similar to mine. No such animal. I couldn't understand much of anything in the neurology texts, and I couldn't find any books on complicated migraine or migraine-related stroke. I checked my various symptoms against a general-knowledge medical encyclopedia, and I didn't fit ANY normal illness profile. No wonder they're having so much trouble diagnosing me! The profile I fit most closely was that of a brain tumor, but even that was not a definite match. Without another MRI, though, I guess I won't be able to know for sure. My neurologist also referred me to a shrink–I have an appointment on Thursday. I suppose it's possible I'm not getting better because some part of me doesn't want to, but I'm having a hard time believing this is all imaginary in origin–not after I was having trouble understanding Bible quotes last night. I don't think I'm clever enough to create memory loss, speech defects, dyslexia, motion sickness, photophobia, horrible tinnitus, faulty depth perception, nausea, all-over muscle ache and fatigue all by myself. Which leads me back to the original question: if I'm truly physically ill, why doesn't something show up on a test? Why, even in my low-pain or no-pain moments, do I still feel that something is askew? I believe I'll be able to face any illness, even a non-survivable one, if I only KNOW WHAT IT IS. The only other strategy the neurologist has for me right now is to increase the blood thinners to triple the original dose. Guess I'm willing to try that. Can't be any less effective than anything I've tried so far. Guess it would be dishonest not to admit that I'm more pre-occupied with the cancer theory than I ought to be. How can I not think about what the tumor in Mom's head did to her? The odds of my living my entire life tumor-free are not as good as in most families. H*ll, even Lisa had a stroke when she was 19 and a pituitary tumor diagnosed three years ago. I don't know how many times I've said, half-joking, that with my family history, it's not a matter of IF I'll get cancer but WHEN. I'm not really scared of the possibility as long as I have honest answers to go by. Of course, I also half-jokingly say that I expect to live to age 112, so who knows? Another reason I'm not convinced I'm faking this is the financial one. I feel enormously guilty about bringing in $150 (at least) less a week in disability that I would be if I were working. I wanted this new home so badly–why would I purposely jeopardize by not working our ability to keep what we finally have? We're not going to survive [financially] beyond July if I can't contribute more. Why would I want us to fail at our dream? I hate that Dan is having to work so much overtime and is looking for a second job. I'm SO tempted to go back to work, sick or not. Last night, the tinnitus got so bad I would have done anything to make it stop (it hasn't improved). I prayed, something I seldom do, both because I'm not good at it and because I have this pervasive feeling of not deserving help. I didn't ask to be cured (I thought that was perhaps presumptuous of me), but I did ask for assistance in determining what to do next and in doing it properly. I apologized for my selfishness and for not showing enough interest in and helping others. I also asked God to help Dan through this crisis. I wondered if this noticeable worsening of symptoms was a sign to take is seriously and let God handle it. When I went to bed, I prayed some more. Suddenly, I got this odd sensation–not pain-free, not painful but uniform and on a level beyond my control. I wasn't quite tingling or floating, but somewhere near there. It was such a relief to not have any part of my hurt more than anywhere else that I just gave in to it and let it take over. I was quite sure that I couldn't move even if I wanted to. I'm not sure what happened next, if I moved or if I fell asleep. In any case, when I did sleep, the dreams were incredibly vivid and disturbing. Some of the more mundane details seemed so realistic that I'm having trouble separating what I dreamed from what I've done while awake. The fantastical stuff was just as bothersome, though. Most of it had to do with violence, death (including mine), grief and blood. The recurring theme was that I deserved such things and that even when I knew I was dreaming, all the screaming in the world would not awaken me or anyone to save me. When I actually did awaken finally, it seemed as though the line between real and not was uncomfortably blurred. I still feel that way. Another sign of illness? I'm not completely sure what to make of it. I've had other, more insightful dreams in the past few weeks. One was quite lengthy: I was driving in the neighborhood I grew up in and I missed my turn to drive by the old house and then take some dollar coins to be appraised. I pulled into a rec center parking lot to turn around and saw Mom sitting on the sidewalk holding some different dollar coins. I offered her a ride, not expecting her to accept, but she did. We went to the coin appraisal place and then I went with her to a restaurant and some shops where everyone seemed to know her. I was surprised she didn't mind having me with her because she was sick and weak and usually preferred the company of Lisa or [my stepfather]. She leaned on me when she got tired, and when she couldn't walk anymore, she let me pick her up and carry her. She weighed next to nothing, and she trusted me completely, even when I almost dropped her. I awoke feeling that she finally accepted me. Another dream I had a few days later is almost forgotten except for one important detail: Mom was in it, and she had short, stubby but thick hair, meaning that instead of the usual dream where I knew she was going to die a second time, her hair was making a healthy comeback and so was she. I was the first dream I had where she survived the cancer. I found this mightily encouraging. A dream I had last week is pretty indicative of my feelings concerning my current "sickness": I dreamed I finally came back to work, self-conscious and wondering what I still remembered how to do. There were lots of new employees I didn't recognize, and I realized there was no longer a computer workstation in my department available to me. I told the foreman, and he sat me in front of a computer used by another department. I fiddled with it for awhile but couldn't figure out how the other department used it. When I informed the foreman of this, I was informed I no longer had a job there. I decided to go back to school to update my education so I could get a better job. I was told I'd have to re-take some of the classes I'd already passed. I reluctantly agreed. I found I couldn't remember anything in the textbook and in fact couldn't even keep up with the beginner level. I was kicked out. I guess this dream was pretty straightforward in its depiction of a situation I may very well find myself in. I don't know whether to be disturbed or amused by some of the weird tricks my mind has been playing on me lately. My sense of smell has taken on a life of its own–the past few days, I've been smelling flowers where there weren't any. Once I saw a pizza commerical on TV and could actually smell it as if it were real. On Saturday, as we were leaving the book store, Dan asked me if I could smell steak from a nearby restaurant (he could); all I could detect, though, were gasoline and oil, even though we were nowhere near a parking lot. I'm also incredibly jumpy lately–more so than usual. One little flicker in the lighting, and I'm recoiling as if I've been slapped. Either I've got the greatest imagination in the world, or something incredibly weird is going on. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 26, 1998 6pm |
Amazing how easily I tire lately. I find myself at times having to catch my breath after doing something as simple as going downstairs. The only exercise I got today was to walk out to the mail box, only five houses away, and I'm as exhausted as if I had worked out for an hour. This can't be good. My MRI appointment has been changed to next week to give the neurologist time to get the approval of the insurance company. I'm glad she thinks this is important enough to pursue. The shrink appointment is still on as far as I know . . . . I'm too tired to only be 34. I can't imagine another 78 years like this. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 30, 1998 10:30pm |
. . . . It's time for me to start on a transition of my own. I need to dedicate more of what little energy I have to improving my health and figuring out what is wrong with me . . . . Dan and I are going to try a new church tomorrow–I think that's the kind of support I need right now. The MRI is on indefinite hold–the insurance company absolutely won't approve it. The shrink appointment had to be cancelled too–seems he and the guy who prescribes my anti-depressants are the same kind of doctor, and the insurance people won't cover both. The neurologist is attempting to get approval to just see the shrink she referred me to and depending on the outcome of that may put together a case of medical necessity for the MRI re-test. What a pain in the *ss. How can I get well enough to return to work if I can't get a proper diagnosis? I did make an attempt to finish typing Mom's poems today. I rented a computer at [a print shop]. Unfortunately, I had to quit after two hours for fear of hurling or having my head explode like in "Scanners". Now at least I know for sure it will be pointless to try to return to work just yet–no way I can handle 7+ hours on a Mac under pressure every day. I still intend to do the remaining poems–it may just take two or three more visits and perhaps a few losses of lunch . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 31, 1998 3pm |
. . . . I think I may have finally found the church for me. . . . . I've had trouble finding something both traditional and open-minded to suit me. We drove by yesterday to find out where it was; I was immediately impressed by the beautiful flowers outside and the fact that the church was nicely kept but not overly fancy. The service this morning was well-attended but not crowded. There are two pastors, one male and one femaie. The sermon was easy to understand without being simplistic–the modern analogies made sense in keeping with the Bible lesson. I was impressed with the church's acceptance of differing faiths and lifestyles (mentioned in the sermon) as well as the presentation of the service in the traditional manner of hymns and readings. The choir is small but sounds great; and there is a bell choir, which I love. I like that they celebrated graduations, births and wedding anniversaries as well as praying for those who are ill or are grieving for someone. The benediction today was a Lakota Sioux prayer, which I thought was pretty cool. After the service, we were presented with a loaf of bread to welcome us. I was relieved to run across a place where my unusual beliefs might fit in. If Dan is agreeable, I'd like to make it my church. I feel like less of an outsider there than at any of the other churches I've been to. I've been anxious to find a place of possible understanding during this season of ill health. My emotional well-being was really buoyed by the service today–everything just seemed to make sense. As confused and frustrated as I've been over the last two months, I really needed encouraging words. I believe that if I survive this sickness, whatever it is, the church may be the best place to learn to help others. At any rate, it couldn't hurt to start there.
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Part II,
Post-Diagnosis: 2000 to 2003
Selections from my journal, e-mails and posts on the Fibrohugs website
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April, 2001 Journal entry |
Easter morning was amazing. The first dream I had featured Mom. In it, we were sitting on the asphalt of an empty parking lot dressed in what we would usually wear for bed, I in my black tee shirt with the white tigers on it, she in a colored gauzy top that came halfway to her knees. We both knew that we should be indoors where the world wouldn't see us dressed inappropriately, but it was more important for us to be talking right then and there while we had the chance, never mind the chill or what people thought. We talked all night long. Finally, toward sunrise, satisfied that we'd said all that was important to say, we got up and headed toward the nearest building, where Dan and I had once had an upstairs apartment. Mom said with pride, "Did you know I bought this house?" She was referring to the building. I was surprised but pleased. She asked if I wanted to see what she'd had done so far. I did–I was curious what the ground floor looked like because I'd never seen it before. We went in, and she showed me around. A complete renovation had been done by the people she'd hired–everything was modern with dark beige carpet. We went up to the second floor where the apartment had been, and I saw that it had been re-done too. I was nodding my approval until I looked down at the hardwood floor I was standing on. Instead of the planks being connected and staggered like brick work, they were completely side by side with huge gaps at the ends. The spaces between the boards weren't filled with anything–they were loose, and I could see crossbeams underneath. I pointed this out to Mom, who murmured her surprise. We agreed she'd have to get something done about that, but my main concern was getting to safety without falling through the floor. Mom didn't seem to have any trouble getting to the stairway, but I had to tiptoe carefully, teetering several times. I finally caught up to her at the top of the landing and was about to go down the stairs to the main level when the whole landing tipped, and I started to fall through the crossbeams. I grabbed the railing at the top of the stairs and was dangling, wondering whether I would fall through the floor or make it to the solid stairs with Mom when the alarm clock woke me up. I had set the clock to awaken me early enough to get ready to go to church. While part of me still felt it was important to go since it was Easter Sunday, another part was so intrigued by the dream I'd just had that I felt compelled to go back to sleep so I wouldn't be left hanging, as it were. And that's just what I did. Mom wasn't directly in the second dream, but it was even more amazing than the first. In it, Rachel Scott [student killed at Columbine High School] was appearing to family members in THEIR OWN dreams and inspiring them to make profound changes in their own and other people's lives. I'm not completely sure who I was supposed to be in the dream–perhaps a relative. At one point, I was looking at a Polaroid photograph of Rachel and someone else (a brother?) whose face in the picture was blank because he had not been able to escape depression (perhaps because he was going to commit suicide?). Rachel appeared to him and convinced him to let God into his life, and instantly, his face was restored in the photograph! The I saw someone in a dark old building who was addicted to heroin. He passed out with a needle still stuck in his arm. In a vision, he saw Rachel, who told him that, even though it would be a monumental challenge, she and God would be there to help him get clean. He woke up, threw the needle far away from him, and called a counselor to say he was ready to change for good. Then Rachel came to me and said I would have the power to help others if I stopped living in fear and relying only on myself and started trusting God to guide me me to do what was right. She said that everything was going to be all right no matter what and not to think that her and my mom's deaths were in vain. She added that as long as people still dreamed about those who had died, it was like the resurrection of Jesus because they were brought back to life in our hearts. She told me that this was the way the dead could help the living and how the living would have the courage to go on. She was saying something about this being the additional meaning of Easter for me when I woke up. It may seem weird, but somehow the second dream explained the first. At least I was satisfied with the answer. I suspect I received a message that was more important to me personally than anything I might have been told at church that morning. For once, I didn't mind having overslept. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 1, 2002 Fibrohugs post |
1st time I've had the courage to list 'em all . . . . Every time I even attempt to describe some of these problems to a doctor, they want to send me to a shrink! . . . . Here goes: • I need an enormous recovery time from something as simple as a cold; it may hang around for months • sore throats that appear and disappear–I never know whether or not I'm coming down with something • easy bruising, or, in the absence of a bruise, extreme unexplained transient soreness that feels like a bruise • night sweats alternating w/sensitivity to cold • confirmed allergies to various types of trees, wheat, yeast, beef & eggs; unconfirmed allergies to air conditioning, expensive perfumes, commercial-strength cleaners, diesel smoke, acrylic & wool clothing; I also get quite sick at the smell of anything burned • all 18 tender points! • nasty IBS that worsens during my period and when I haven't had at least 7 hours of sleep the night before; lack of sleep also makes me nauseous sometimes to the point of vomiting • losing weight has been a monumental challenge! • occasional heart palpitations accompanied by lightheadedness and sweating • yeast infections whenever I get near an antibiotic; I also get them if I don't eat yogurt and take acidophilus every day • horrible bouts of all-over itching and rashes that simply will not stay away • gotta pee way more often than I'd like • sharp but transient chest or rib pain that makes it hard to get a breath • hair loss and breakage • repetitive motion syndrome; symptoms come and go at random even when I'm not overdoing it • dry eyes to the point that my vision is impaired; I also constantly feel as if there are foreign objects in my eyes • thirsty no matter how much water I drink • fatigue so bad I actually feel as though I could die of exhaustion • worst and most persistent pain is in feet, followed by mid-back, then lower back; but, to be honest, something always hurts on me at any given time! • low thyroid function, adenomyosis and sleep apnea • periodic numbness in arms, hands • knee pain that feels like what the doctor used to call "growing pains" • lots o' pain during exercise (but I do it anyway!) • severe fibrofog; I actually feel that some of my cognitive function is permaently lost. I can't figure out a simple tip in a restaurant anymore. Also weird word substitutions or completely forgetting what something is called, or I can remember it, but can't say it • severe slurred speech when fatigued; often try to speak, but everything comes out sideways • clinical depression that I usually can overcome, but not always • nasty mood swings, including embarrassing temper tantrums and anger that seems to come from nowhere despite my attempts to keep a positive outlook • can't keep stage 4 sleep to save my life! • headaches of all kinds–migraine, tension, and occasional cluster. The migraines have lasted as long as two months at a time, and I get them without fail during my period • fluctuations in vision–suddenly it will get much sharper when I hadn't noticed it was blurry before • weird tingling sensations, thankfully not long-term • very frequent bouts of spacing out–sometimes I have no idea how I get through a day (thank God for my strong sense of autopilot!) • dizzyness, incoordination–when I'm in a flare, I get a nightmare case of 'dropsy' • tinnitus that sounds like the old Emergency Broadcast Signal; it interferes with my hearing more and more lately • severe weakness in my hands, even when not plagued by the repetitive motion thing • if I so much as twitch wrong, I'm injured • bright lights feel like daggers • I can be very sensitive to sound and extremely jumpy • I'm a cheap date, meaning that just one drink can get me intoxicated • narcotics make me vomit until I pass out, while anti-nausea meds make me literally psychotic; most other meds have effects somewhere in between • overly acute sense of smell, and sometimes I even smell things that aren't there • severe, violent spasms and muscle cramps, worst when I'm trying to sleep but on a smaller level any time of day • stiff as a board upon awakening; the sensation of my feet first hitting the floor is excruciating; I also have a horrible time getting going mentally or physically each day • I get the shakes when I exercise too much or go too long without eating That's a lotta stuff! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 5, 2002 |
The story of fanfaire The story is quite long, but probably not so different from the average fibromyalgia sufferer . . . [In late 1996] My mother was diagnosed with terminal cancer just a few weeks after I got re-married. The emotional pain was immense, and I knew I wouldn't be able to be strong for her with depression threatening to devour me, so I reluctantly agreed to take Paxil. The side effects were quite bad, but the doctor talked me into staying on it anyway. Soon after I began taking it, I came down with antibiotic-resistant bronchitis and had a reaction to guiafenesen, which had never bothered me before. A year later, I was switched to Prozac because the Paxil had stopped working. The side effects of the Prozac were even worse, but the doctors insisted I keep taking it anyway. In April 1998, I was suddenly seized with a violent headache. I hadn't had a migraine in ten years, so I went to a doctor right away. She found nothing wrong; when I still had the heachache the next day accompanied by vomiting, slurred speech and impaired motor skills, they began running tests. Not only were all the test results normal, but all the migraine medication I tried had no effect, and the headache went on for two months! I of course couldn't work during that time. The ironic thing is, my employer wouldn't let me come back without an ok from the neurologist, and the neurologist wouldn't ok my return until I had one more test done, and the insurance company refused to cover this test since none of the others had revealed anything, and I couldn't afford the test because I'd been out of work for two months, and the employer wouldn't pay disability because they had no proof I was sick! I ended up missing three more months, during which my symptoms gradually began to fade away. That is, until December, when I was in an accident! I did respond to treatment, albeit very slowly. I was starting to improve when in April 1999, I had emergency gall bladder surgery. The pain medicine they gave me in the ER made me extremely nauseous, and when they gave me anti-nausea medicine, it made me psychotic! Then, post-surgery, I was given Demerol, which made me vomit again. Before I had stabilized, the insurance company kicked me out of the hospital. I was given Vicodin to take at home. I took one pill, vomited repeatedly for the next 12 hours until I passed out, and ended up back in the ER, where they gave me the same anti-nausea medicine I had reacted to the night before! Is it any wonder the fibromyalgia moved in for good? By October of 1999, I had run the gamut of specialists and tests. I had even been sent to a shrink, who fortunately told me that I was totally sane and couldn't be imagining the mysterious symptoms that plagued me. On Halloween night, I had a sleep study done. To everyone's surprise, they found two abnormalities: sleep apnea plus an unrelated frequent disruption of stage four sleep. The doctors at last quit telling me my problems were psychological and started looking more seriously at what could be wrong. Finally, in April of 2000, I was referred to a rheumatologist, and voila! I discovered I had fibromyalgia! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 6, 2002 |
. . . . I am fortunate to be working now. I think the reason I can manage to is that my husband Dan and I have the same job, so he can do all the driving back and forth. It is mostly sit down work, which probably another reason why I am still able to do it. Also, I'll be the first one to admit that Dan spoils me, doing all the housework while I just take care of the checkbook . . . . I've been trying to adjust to new medication for the past month. I was diagnosed with hypothyroidism, as if having fibro wasn't bad enough. It's been a real roller coaster ride getting used to the thyroid hormone I'm taking. One minute I'm freezing, the next sweating; one minute excited and the next depressed; one minute I'm tired and the next I feel like dancing. The only consistent things are mid-level pain, muscle spasms and ever-worsening fibrofog. Maybe it will even out in time . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 14, 2002 Fibrohugs post |
Paxil caused my fibromyalgia! I am certain of this! I was bullied into taking it by a shrink who was treating me for depression related to my mom being diagnosed with terminal cancer. I had an extremely toxic reaction to it within 48 hours of the first pill I took: I became hyperactive in a scary way, my tinnitus got suddenly much worse, I completely lost my equilibrium and my muscles started to spasm violently, especially in my feet! I also got quite paranoid. I called the shrink in a panic and asked him if I should go to the ER. He dismissed the symptoms and insisted I stay on it! Being the "good girl" that I am, I endured the side effects silently, but some of them never went away. When I complained of sleeplessness (I'm talking days on end), I was prescribed Trazodone to make me sleep at night in addition to the Paxil during the day. I had NEVER reacted unfavorably to a medication before the Paxil, but afterward, I had a chain reaction where nearly every medicine I took did something awful to me, even meds that had been old friends before the Paxil. Soon after, I began having unexplained pain. Nearly a year later it was concluded that the Paxil wasn't helping my depression and I was switched to Prozac, which produced the same side effects plus weight gain and the inability to censor my thoughts. Again I complained, again I was told I had to stay on it. A few months later, I suffered something very akin to a stroke and was finally told by a different doctor to stop the Prozac . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 16, 2002 |
. . . . The only downside of Valentine's Day has been the ongoing headache–I'm in day four of it now. Not much I can do for it except wait for it to pass. When I was at work last night I almost made an $80,000 mistake because my vision was fluctuating due to the migraine and I transposed some ad numbers! I'm lucky I caught it before it printed! I'll have to be more careful–one of my co-workers made a mistake like that and it ran in the paper and he got suspended for three days . . . Got some bad news tonight. My great aunt my dad's side died this weekend in Memphis. Her husband died about 15 years ago and they didn't have any kids, so my dad will be executor of her estate. He'll be flying out there sometime next week. I can't afford to go out there since I just bought this computer and paid a $250 deductible on getting the car repaired. It's finally out of the shop, but Memphis is too far for me to drive right now. The person who would have wanted to go to the funeral would be my grandmother, but she's in ill health and has Alzheimer's so bad she barely remembers her own sister-in-law. I've been instructed not to even tell her. I find the situation terribly sad . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 18, 2002 Fibrohugs post |
All fogged in, all day . . . . Got up after only four hours of sleep to go to a birthday brunch for my grandmother. Thought no one would notice how fatigued I was until I started to tell my husband I was going to the dessert table that was maybe 30 feet away. For some reason, I told him was going downstairs? The restaurant doesn't have a basement! After the brunch, I drove to the pharmacy. My husband waited in the car. When I finished there, I stood on the curb in the parking lot for awhile wondering when he was going to pick me up, totally forgetting that I had driven! I figured out where the car was & headed in that direction, thinking I would need my keys. I reached in my purse, pulled out a pen and pointed it at the car! Then I realized that not only would it not unlock the car, but also that the car was not locked anyway! On the way to a second birthday party that day, I stopped at an ATM to get some cash. Got a message that said it couldn't process the transaction. Thought that was weird and tried it again–got the same message. Now I was getting angry because I knew I had enough money in my account for a withdrawal–obviously I had a malfunctioning machine, and where was I going to find one that worked and make it to dinner reservations on time? Went through the process for a third time, cursing the stupid machine under my breath. Got the error message a third time and started to leave, until I realized I had never entered my PIN number! Now the machine wasn't stupid, I was! LOL! Sheepishly completed my transaction and headed off to dinner. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 20, 2002 Fibrohugs post |
Gimme an "E" . . . . My job includes digital processing of ads. A few months ago, our incoming e-mail application was changed from Netscape to Entourage, and I wanted to know if it could be used for outgoing e-mail as well. I started to ask a co-worker about it and couldn't remember what it was called. I knew the first letter of the word was an 'e', and the word that popped into my head was 'escort'. I thought, no, that's the name of a car, and instead blurted out, "Escargot!" My co-worker began to giggle, and confused, I said "Excalibur?" When the co-worker told me it was Entourage, I realized how far off I was and had a good laugh too. I still call that stupid thing Escargot; it's easier to remember! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 24, 2002 |
. . . . Last Monday I went to my new primary care physician for a thyroid evaluation. I started on thyroid hormone therapy last month but haven't reached a proper level yet. She doubled my dose of medication. The first few days I felt fantastic, but the effect is wearing off and I suspect when I go back there in April the dose will be raised again. I don't mind waiting for my next appointment because even though I don't feel at my best it's still a lot better than before I started treatment. Tomorrow I go to the rheumatologist. I'm going to ask him if I can discontinue the Trazodone I was taking to help me sleep; it has stopped working. I'll inquire about trying Ambien instead–it's the only sleep aid I haven't tried yet. If he doesn't think it's a good idea, perhaps I'll look into some natural sleep aids like Valerian root or Melatonin. My sleep has been very poor lately. The migraine finally went away on the seventh day. It has tried to come back twice since then, but each time I was able to get rid of it again. I would like to try some natural headache prevention like Feverfew but can't while I'm on the Trazodone. Another project that has been occupying my time is researching the side effects of Paxil . . . . . I found a book today that has provided some answers–it describes something called extrapyramidal syndrome, which involves four neurological problems induced by medication-related brain damage. I have all four of the components, the worst being constant muscle twitches called dyskinesia. The twitches started after my very first dose of Paxil and have never stopped since. They are bad enough to prevent me from sleeping; I believe it was long-term sleep deprivation that triggered the fibromyalgia. I don't think that antidepressants should be banned or anything, but I do think that patients and their doctors should be made aware of the possible side effects so they can discontinue the medication if necessary to prevent the sort of damage I have. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 3, 2002 Fibrohugs post |
Men only, please! My hubby and I went to church tonight. We got there a little early for the service and both decided to use the bathroom. I followed him around the corner, down the hall, and through the door, all the while talking about something. Stopped in the middle of a sentence, puzzled because I couldn't figure out what was different about the room I was standing in. Then I realized I had never seen that room before because I was in the men's bathroom with my husband! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 9, 2002 |
. . . . I thought Saturday would never come! I've had a hard time adjusting to going off the Trazodone. Haven't slept through the night in two weeks now. Have gradually eased off the medication. Last night I didn't take any at all. The rheumatologist did prescribe Ambien for me, but I wanted to wait until the Trazodone ordeal was over in case the Ambien gives me side effects too. I think tonight I'll try taking half of one because I REALLY need some sleep! I've talked to a few people who said that Ambien increased their memory loss, so I'm going to be careful and stop taking it if it seems my memory gets worse. I have a hard enough time functioning mentally now as it is! About the muscle spasms . . . sometimes they'll start in one area and travel through my body like electricity. Most of the time, though, it's more just the muscles rippling on their own in one area. The calves and feet do this nearly all the time right now. I also get sudden cramping in a muscle that twists it all out of shape. I hate when it happens in my hands at work, or in my feet and calves while I'm trying to sleep. My hands also shake all by themselves, and often I have no grip strength. And then there are times when the muscles in my face, especially around my eyes, start twitching; it gets worse if I close my eyes. When going off the Trazodone, there have been times when I seem to be shaking on the inside as well as the outside–it's very hard to explain. I also stutter for no reason–I hate that because I used to talk for a living and it drives me crazy not being able to form a sentence. I've tried the Imitrex injections for migraines—I hate giving myself shots so much it was almost as bad as the headache. Imitrex did get rid of the pain, but only for a few hours, and when it comes back, you're not supposed to take any more so I gave it up. The insurance wasn't very good about paying for it anyway . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 20, 2002 Fibrohugs post |
Avoiding dependence on Ambien After going through hell weaning myself off of Trazodone as a sleep aid, I was reluctant to try the Ambien I had been prescribed for fear I would become as reliant on it as I had been on the Trazodone. I first tried no meds at all, and, to my surprise, found I couldn't sleep at all! Then I tried half of a 10mg Ambien pill, and it worked like a charm–my first uninterrupted eight hours of sleep in at least five years. I went down to a quarter pill out of curiosity–it got me to sleep, but couldn't keep me there. So I knew I could get by on 5mg a night with good results, but wanted to know how to stay that way. Also, I wanted to know what to do about those nights where I might not have eight uninterrupted hours at my disposal. Decided to ask the pharmacist that filled the prescription for Ambien if she had any advice. I'm glad I did! Turns out her aunt has fibro and takes Ambien. She suggested I take it no more than seven days in a row at a time. In the intervals between, I could try an over-the-counter supplement called Alluna Sleep. It's bascially valerian root and hops. I gave it a try and was suprised at how well it did get me to sleep–can't keep me asleep through the muscle spasms like the Ambien does, but it's otherwise very good–like the Ambien, no major hangover the next day. So I'm going to alternate between the Alluna and the Ambien for as long as I need it and as long as it works. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 27, 2002 |
. . . . believe it or not, I won a radio station contest last week! I'd never entered one before. The prize was front row tickets to see a band I liked, a chance to interview one of the band members on the air, and to have a review of the concert published on the radio station's web site. The amazing thing was that the concert happened to fall on my birthday, which was Friday! My sister and I went to the station that day and had a tour of the facilities. The technology of radio production is really amazing these days! I was there about an hour when the guy I was to interview arrived. He autographed one of my old record albums for me and posed for pictures with my sister and me. The interview went pretty well–I had written the questions down so I wouldn't succumb to fibrofog and go blank. The concert that night was GREAT! I got to stand right in front of the stage! I got to shake hands with some of the performers, and one of them gave me a guitar pick! I had until yesterday to write the review–I'm such a perfectionist that it took me all weekend to do, not counting helping paint my grandmother's house on Saturday and a birthday brunch with my family on Sunday and church. Don't know if or when they'll put the review on the web site. Hope it's soon. Yes, things were going great until today when I woke up with an ear infection. I'd had various symptoms for about a week but had ignored them because I get sore throats and weird aches and pains all the time, and they usually go away on their own. I knew this morning that I was really sick, though, and went to the nurse practitioner this afternoon. I got some antibiotics, which haven't had a chance to kick in yet–right now I've got a temperature of 100 degrees! My normal temp is only 97. I'm in severe pain tonight–can't sleep because it hurts too much to touch a pillow! I think I'll try some of that capsaicin cream on my feet and legs so at least they'll stop hurting. I don't like the stuff because it burns when you put it on (it contains the same ingredients as in hot peppers), but it does eventually help . . . . This fever's making me feel very strange, so I'll stop now and try to rest . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 31, 2002 |
. . . . I never thought I would find myself making mistakes, forgetting how to do my job (it's very repetitive, so go figure) and falling asleep at my desk. I'm still very very wordy (can you tell??), but I'm appalled that I'm forgetting how to spell (I was in the state spelling bee as a kid), how to get my point across and even at times how to form a sentence! I've found I constantly interrupt people in conversation, not meaning to be rude, but because I will totally forget what I need to say unless I express it immediately! Sometimes that doesn't even help. I know I was once an intelligent person, but I spend more and more time flailing my arms and sputtering, "You know, that thingy? What's it called?" and less and less time completing a thought without doing that. Of course, there are times that seeing people's reactions to me doing that is rather amusing . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 6, 2002 Fibrohugs post |
Can't stop crying . . . the pain is unbearable . . . . Last week's ear infection triggered something . . . the pain escalated to the worst I've ever felt. I'd hoped the pain would lessen as the infection and bronchitis passed, but it's not working that way. The pain is NOT GETTING BETTER. At the doctor last week, I asked for a prescription for the pain so I could function. The doc (filling in for my primary care physician who is on vacation) changed the subject. I asked again. She said to take Aleve, as though I didn't know what a pain reliever was. Please bear in mind that I take NOTHING for pain and have NEVER BEFORE asked for medicine. I mentioned to my husband and some friends that I was in the worst pain of my life, but I don't believe I was taken seriously because I was so calm about it. Well, I'm not calm anymore . . . . tonight when I got home from work, the dog sat on my foot and I began to cry, which suprised the crap out of my hubby. I recovered after a few minutes and went downstairs to get something to eat. The pain was so intense just performing normal movement that I couldn't stand it anymore. I began to sob and am still sniffling an hour later . . . . my hubby patiently hugged me and listened to my woes, but he's stumped as to what to do. I cannot think of what to do for the pain. I do mild exercise, 20 min. walking the dog three days a week and stretches another three days a week. I do this no matter what the weather or how much pain. I need the movement to keep from cramping up. I went back to the chiropractor yesterday, and I've been getting massage every other week since the beginning of the year. I take the stairs (3 flights) at work, and park at the far end of parking lots. I stretch frequently at work to keep from stiffening up. I watch my posture and ergonomics at work and at home. Normally this sort of thing keeps me going–not now. My diet is decent–it could be better–but I'm drinking tons of water and keeping the meals light and frequent. I'm 50 pounds lighter than when I was diagnosed, so I don't have the stress on my ankles, knees, lower back, or feet that I did two years ago. My sleep could be better, but I'm working on that and actually had nine uninterruped hours last night. I've been off all antidepressants for a month and have felt good emotionally for a few weeks now, so it's not mental. I can't figure out why I'm worse!!!!! I know I'm venting, but it's the only other thing I can think of that would help that's not a drug . . . Here's the biggest obstacle. Nothing I've ever tried for pain was successful. I've tried at least a dozen different kinds of anti-inflammatories. None did a thing, as would be expected with fibro. I've tried at least six anti-depressants: none helped at all with pain, and all except Trazodone made me horribly ill. Narcotics and I have a bad history. The following meds make me vomit to the point of unconsciousness: Vicodin, Demerol, Ultram, Darvocet(?), Percodan, Codeine. The only narcotic that didn't make me vomit was morphine! Doctors don't prescribe that unless you're in surgery or have cancer, right? What do I do? Is there ANYTHING I haven't mentioned for pain? I won't go to the ER as long as I'm conscious. The last time I went, they gave me a medicine I'd told them I couldn't tolerate. I became psychotic and tried to strangle a nurse, convinced I would die if I stayed in the room! I am considering going to my primary doc's office tomorrow even though she's not back from vacation yet . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 7, 2002 Fibrohugs post |
. . . I've got a game plan now . . . . . . . For the first time in my life, there is absolutely nothing to blame the pain on. Usually I can rationalize that it was too much activity, not enough activity, stress, my period, adjusting to meds, depression, poor lifestyle/body mechanics–all the stuff the docs have mentioned when I've complained of pain. None of these apply, I'm certain of it. For some reason, fibro pain was never that "real" because I always had an answer or some self-improvement plan to use as a distraction. As long as I was at about level 8 out of 10 (had been for about six months), I could tune it out and get on with life. But levels 9 and 10, which arrived last week, wouldn't let me function anymore. Level 9 made me edgy and on the verge of tears everywhere I went, at work, at home, at the doctors, etc. Level 10, which thank God only happened at home, is what made me so desperate last night . . . . Now onto the fibro warrior part. I crawled out of bed this morning, severely pissed off at my body and determined to do SOMETHING. Started researching pain meds and found to my surprise . . . that some are morphine-based. Morphine is the only narcotic I can tolerate. Also found out about methadone, something I would never have considered. Did what I usually do when faced with a new fibro catastrophe–bought another book. For some reason, this always helps–I guess because I can then feel like I'm in charge again. My plans for Monday are to call my primary doc's office and get in ASAP . . . I'm going to type up all the pertinent info on my pain (how bad, how long, what works, what doesn't, what I've tried and what I expect to accomplish) and present it to the doc. I'll not be asking for total pain relief, just enough to get me back to level 8 so I can cope. I think that's more than reasonable, and that I have a right to expect that. If I can't get a prescription, I'll at least insist that my documentation be put in my medical record. I've suffered, mostly silently . . . for five years now. There's nothing on my chart that shows how much I hurt because the few times I've mentioned it at the doc's office, I've either begun to cry like I was mentally unstable or I accepted a doc's latest notion of a quick "fix" that didn't involve meds. While I get an "A" for effort, the pain scores a great big "F" . . . . I'm scared. I read a statistic today that only 12% of doctors will prescribe narcotics for nonmalignant pain. I pray that my regular doc is back from vacation and that she is one of the 12%. But war is hell, isn't it, and I guess it's normal and good for a warrior to be scared . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 14, 2002 |
. . . . I have a checkup on Monday, and I'm going to ask if I can switch from my current synthetic thyroid hormone medication to a natural one. I bet I'll do better on it–a lot of folks with fibro do. It would be so cool to not fall asleep at work. . . . Depending on where you live, pain specialists are sometimes the only option when narcotic meds are needed. Methadone, OxyContin, and MS Contin, three meds proven to help fibro pain, are considered street drugs here, and no regular doc will prescribe them . . . . . I'm afraid the guy I'm gonna see next week is gonna repeat what my last 12 docs have said: "You're just going to have to live with it." I know one thing: if he even SUGGESTS another anti-depressant or anti-inflammatory, I'm gonna scream! On the other hand, what have I got to lose? The visit is covered by insurance, so it's only $10 out of my pocket. I've already decided to see a naturopath if the pain management guy can't help . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 21, 2002 |
. . . . Unfortunately, the doc I was sent to on Monday was the wrong kind. He only treats injuries and localized pain, not chronic pain of a non-traumatic nature like I have. He did refer me to someone in his building who does treat fibromyalgia, but I couldn't get an appointment with the guy for another month. Don't know how I'm supposed to get by until then. He isn't fully covered by my insurance, either, meaning I have to come up with something like $330 for the initial consultation. At least I have a month to raise the money. I'll put up with the waiting and the cost because he has 25 years of experience in treating chronic pain and is a past president of the American Academy of Pain Medicine. If he can't help me, no one can . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 27, 2002 Fibrohugs post |
. . . . I want to take the dog for romps that last all afternoon. I want to see my mom again for just one day so we can write poems together and laugh at each other's jokes just like we used to. I want to be able to sit through an entire movie or play in the theatre without pain and without needing to pee. I want to resign my position as headache princess. I want chocolate and hamburgers to become health foods. I want to go backpacking. I want to be able to sleep in a hotel bed without waking feeling as though I'd been trampled by elephants. I want to wear high heels again. I want to dance all night. I want to go rollerskating. I want to read in bed . . . . I want refreshing sleep. I want to be a photographer, a writer, a voiceover artist, a comedian, AND a musician. I want to volunteer for projects without worrying about whether or not I'll be up to the challenge. I want my sex life back! I want my hair to stop falling out so I can do something cool with it. I want to quit putting things off until I'm healthier. I want to see docs for cosmetic reasons only. I want my memory back! I want my adenomyosis to vanish so I can have a nice flat tummy. I want to play tennis with my hubby. I want my clutter to magically organize itself with nothing turning up missing. I want to have a cook, a gardener, and a masseuse at my beck and call. I want to be stunning AND brilliant. I want it to be a crime for a doc to refuse to treat chronic pain! I want to be able to tolerate sitting in the tub so I can have bubblebaths. I want my fingernails to quit breaking so I won't be embarrassed to get a manicure. I want to be funny AND sexy. I want people to notice my eyes, not the circles under them. I want to travel the world without flares or jet lag. I want to do calligraphy. I want to ride rollercoasters. I want to skydive and scuba dive. I want an enormous party in my honor. I want to have a drink or two. I want perky breasts without a bra . . . I want Montel, Oprah and 20/20 to do shows on how fibromyalgia was cured . . . . I want Newsweek to make this their cover story. I want to fly like Peter Pan!! . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 1, 2002 |
. . . . My job itself is tolerable; it is I that am not. Tonight I went back to the ad-building department; I haven't been assigned there in a year, since the city's two newspapers combined. The proofreader had called in sick, so in addition to building ads, I had to proofread them. The work wasn't that bad; I didn't get anything difficult. The working conditions, however, SUCK! It took me 20 minutes to get a work station set up to use–adjusting the keyboard holder, finding a chair that wouldn't kill my back and adjusting it, positioning the monitor, the desktop pattern, the type size on the screen, lining up a copy holder, etc. I got to work and had a technical problem and had to find another workstation! The worst part of that department is the fluorescent lighting–many of the bulbs are out, and it's like being in a cave. I got a migraine, I think from just the lighting. If I get one next Tuesday (so far, I have to only do this stuff on Tuesdays), I'm gonna throw a fit. The lighting in my usual workspace is quite pleasant only because I go to the foreman whenever a bulb goes out. I heard the comment tonight, "You sure do complain a lot!" I don't think they fully realize that all these adjustments are necessary. I've nearly gone home sick about a million times over the past few weeks. Several people have approached me to ask if I'm ok; I must look like hell. Frankly, I have no idea how I even leave the house lately. I know that I'll be functional again when I get some pain relief, so if I can just hold out until then, I'll survive . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 4, 2002 |
. . . . Still have two weeks before I get to see the pain doc. I will be honest: the level of pain I'm experiencing (and have for a month now) is at the excruciating level. I'm barely a functional human being anymore. I haven't had a good night's sleep since the last week of March, and it shows. I have no idea how I'm still working. I just go, try not to cry, produce a few ads, and then go home again. Not what I call exemplary. Tonight I'm staying home while Dan goes and plays pool with a friend of ours. I hurt too much to do anything like that. If I can just get someone to prescribe some sort of potent painkiller (they do work on fibromyalgia, no matter what you may have read), I'll be able to improve my situation, and incidentally, my mood. All this business of doctors telling me to ignore my pain may have done me irreparable harm. I've read recent studies that show what long-term untreated pain does to the mind and body–not pretty. It's probably too late now to get rid of the pain completely, but I do expect to be able to reduce it to a tolerable level with some cooperation from the medical/insurance community. If not, then I'm probably looking at disability and therapy. It's that bad. In the meantime, I'll have to get started this weekend on filling out paperwork for the pain doc, about twenty pages' worth. I don't mind so much because it's all stuff he'll need to know in order to get to the bottom of my condition. The last thing I want to do is waste my time repeating tests or ineffective medications. The initial consultation is expected to last between an hour and a half and two hours, which is encouraging. The average time that has been spent on me in the doctor's office lately is five minutes with an established doctor and 15 for a new one. I guess that's the difference between managed health care and going "out of network" . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 11, 2002 Fibrohugs post |
Keeping my cool??? In the worst fog of my life lately, so of course I've been forgetting and misplacing things more than usual. What's weird is how many of them this week have to do with the refrigerator! First my hubby finds the tortilla chips in there, after I had assured him that, no, I hadn't eaten them all yet and that, yes, I put them back in the pantry. Then he finds a clean empty cup in there, and I realize that I had begun to empty the dishwasher and had put it there instead of the cabinet. Then yesterday, I was cleaning out the book bag I take to work and very nearly put music CD's in there! I swear, the next time I feel I've lost mind, the first place I'm going to look for it will be the fridge! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 26, 2002 Fibrohugs post |
STILL Men only, please! Two months ago, I posted about inadvertently following my hubby into the men's restroom at church. Well, this week at work, I pushed open the door to what I thought would be the stairwell only to find that it was, you guessed it, the MEN'S RESTROOM! There was no one in there, thank goodness, but the echo of my laughter in there was loud enough to startle the janitor in the hall behind me! Sometimes I am my own best amusement! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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June 13, 2002 Fibrohugs post |
Two tix for WHAT? Got together with my hubby and a friend to see the new 'Star Wars' movie. I hardly ever get out to see a movie, and I'd been looking forward to seeing it for months. The line for tickets was long, so we stood around and talked until our turn. I got my money ready and everything, and when I got to the ticket window, I said, "I'd like two tickets for . . . . " I couldn't remember what movie we were going to see! Even the guy behind the counter thought it was pretty funny! And just an hour before that, I'd been bragging that I thought my fibrofog was going away! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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June 20, 2002 |
. . . . I finally got in to see the pain management specialist in May. He had me try this anti-seizure medication, of all things, for my constant muscle spasms. Well, guess what? The medicine didn't work on the spasms; in fact, it made them worse temporarily. But on the second day I took it, I woke up without a headache for the first time in five years! This stuff (it's called Topamax) also helps with that pervasive, all-over body ache I always seem to have: it's not in the muscles, not in the jointsI honestly believe it was neurologically based. Before taking it, I'd say my overall pain level was 9-10 on a scale of 10; now it's about half that. This medication isn't perfect; it does, in fact, have nasty side effects. Fortunately they do seem to be temporary and dose-related, so I'm increasing the dosage slowly and should reach the maintenance level in another month. I'm also working on some other health issues such as thyroid supplementation (still having trouble) and trying biofeedback if I can get the insurance company by some miracle to pay for it . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 13, 2002 |
. . . . I'm about two months into another round of horrible fatigue, the third time this has happened since last fall. I believe the solution for it is a natural thyroid hormone, but my primary care doc won't switch me from my synthetic medication. There is a place about an hour from here which does a controversial treatment called metabolic rehabilitation. I've had them send me their evaluation paperwork, which I will show to my pain management doc on Wednesday. If he agrees to work with them, I will do it, even though it won't be covered by insurance and I don't know how I will pay for it. I'll find the money somehow if I have to. The process would involve diet, exercise, supplementation, bodywork and T3 thyroid treatment . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 18, 2002 Fibrohugs post |
Food for a phone call? Went to call one of my doctors and discovered I'd lost her number. No problem, I thought–I'll just look it up in the phone book. Went to get the book, and couldn't find the white or the yellow pages. What in the world? Started grumbling, as I thought my hubby must have tidied up and moved them someplace, and was just about to accuse him of this, when the dog comes running over to me excitedly. The reason for this was that I was looking in the pantry (food closet) for the phone book, and the dog thought I was getting him a treat! . . . . Of course I sheepishly gave the dog a small tidbit and walked over to the cabinet where the phone books are supposed to be, and they were all there. Silly me. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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August 25, 2002 |
. . . . I've not been too well. I was supposed to stop taking my sleep medication for up to two weeks before having an EEG done to see if I'm having seizure activity at rest, but after five days without my meds, I found out the EEG wouldn't be until September 3rd, so I started taking my Ambien again because I was miserable. While off the medicine, my leg and foot spasms got worse and I had symptoms return that I hadn't had since I went off Trazodone in February, like a tremor in my right hand, twitching in my right eye, and I started stuttering again. I went back to the Ambien last Monday and have taken it every night since then (normally I only take it three or four days a week), but my hand still shakes. I nearly broke a glass shelf tonight because I was putting a coin in a stand and knocked it down twice and broke the stand. I have to go back off the Ambien again tonight so that it won't be masking anything that could be picked up by the EEG. I wonder how much worse I'll get. The other weird thing that is going on is the medication that I'm taking for migraine and nerve pain prevention, Topamax, suddenly stopped working in the middle of the night on Thursday. I just woke up and all the pain was back. It's an anti-epileptic med, so I can't randomly increase the dose or lower it without permission from the doc, and I can't get a hold of him until Tuesday. It started working again on Friday night, but on Saturday, the pain started coming and going at random, and it's been doing that ever since. One minute I'll be fine, and the next, it's like someone ran a spear through my head, and it will be gone five minutes later. Or I'll be seized with excruciating pain everywhere for an hour or two, and then it will vanish. I think the doctor will probably have me discontinue this medication. It's a shame because it's the only thing I've taken in five years that worked . . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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September 3, 2002 Fibrohugs post |
Unexpected reaction to an EEG Finally had an EEG done today after a one-week holiday from all sleep aids and a two-day holiday from all caffeine (I had tried to do a week on nothing but water to drink but couldn't manage). Had thought I'd never done one before, but when the technician explained he would be flashing a strobe light at my face while I had my eyes closed, I remembered that I'd done one four years ago after I got fibro but before I was diagnosed. That test had been completely normal, so I was expecting the same thing today, or at least that it might detect something as I was falling asleep (they were looking for sleep myoclonus or some other reason for my muscle spasms). Imagine my surprise when the strobe went off, and the right side of my face, which has a tic that only happens when I'm trying to sleep, suddenly went crazy! The eyebrow, eyelid, and upper cheek began twitching violently! The other side twitched some too when the strobe flashes became very rapid. I couldn't do a thing but lie there and try to relax. I had absolutely no control over this at all. It got so bad that my tics continued even between sets of strobe pulses, and then my feet started flapping, just like when I'm sleeping, and my right hand, which had only a tremor, actually started twitching too! After this, I did some rapid breathing, and the twitches slowed some but didn't stop. Then I was supposed to go to sleep, and almost made it, but some construction noise startled me. I twitched right up through the time I was drifting off. I knew my spasms weren't normal, and I knew they had gotten worse (the facial tics didn't start until after I discontinued Trazodone in February), but I had no idea this could happen! I know this isn't "just" fibro as the docs have been telling me. I didn't even flinch during the EEG in 1998, and my sleep study in 1999 looked specifically for restless leg syndrome and didn't find anything wrong. My husband had seen the leg and foot spasms for the last five years and knew then that I wasn't making this up, but they had always stopped by the time I got to a doc's office, so all of my complaints were dismissed even when he came with me and comfirmed them. My husband was there today; he'd heard me describe the facial tic but had never seen it before, because he goes to sleep earlier than I do and always misses it. Now finally someone medical (the technician) can confirm the spasms, but I don't know what this means . . . . Was this actually a seizure of some sort, or an escalation of tardive dyskinesia? I won't know for a few days what the actual readings showed . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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September 15, 2002 |
. . . . I'm still looking for a primary care doc; I saw one yesterday but don't think she will work out. She was not willing to let me switch thyroid medications and said that my exhaustion was just normal fibro. I can tell the difference between daily fibro fatigue and the horrible exhaustion from low thyroid, but when I told her this, she didn't believe me. She wanted me to take a brand new anti-depressant instead, even after I told her that those kind of meds only make me sicker. She told me that all her other fibro patients do very well on either Trazodone or Flexeril, so I should too. These were both on my list of medications that I couldn't tolerate because of side effects. I will try one more doctor before I give up . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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September 17, 2002 Fibrohugs post |
Sudden hand weakness I've had a return of a symptom that I'd hoped was long gone. Periodically, I lose all grip strength in my hands. The last time was about two years ago and lasted for a few months. The first time was shortly after I had a stroke-like episode in 1998, and that time it lasted for five months. I've complained mightily to doctors about it, in fact have made appointments for the sole purposed of having my hands examined, and the most response I've ever gotten was "hmmm". Neither neurologist I saw was impressed; in fact, they both told me this was a psychological problem, but then, this was before I was diagnosed with fibro by the rheumatologist. What I'm wondering is not just what it is but why it came back. One thing I do know is that it sure wreaks havoc on your life when you can't rely on your hands. I hope I'm not stuck with this problem for months again. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 6, 2002 Fibrohugs post |
Zanaflex making muscle spasms worse . . . . is this temporary? Just started Zanaflex this weekend for my chronic nightly muscle spasms. It's also supposed to replace the Ambien I was taking as a sleep aid. Since I'm incredibly sensitive to meds, I only took half a pill Friday night, but nothing happened, so I took a whole pill last night. The first thing I noticed was that it made me calmer, not that I was ever tense or anything, but I was not in the least bit sleepy. I didn't seem to mind that I wasn't getting any sleep. I guess that's what I mean by calmer. I hope that made sense. The second thing was that it made my muscle spasms worse! I had to get up and put a hot washcloth on my poor cramped up foot; I tried to work the knots out then, but they just wouldn't budge, so I put Mineral Ice on it and tried to relax the best I could. When I went back to bed, whenever I tried to get in my usual sleeping position (on my side, knees bent to reduce pressure on my lower back), something else would cramp up. By the time I got up seven hours after I'd gone to bed, I had spasms in areas that are usually fine; my arms and back were even twitching. I also got abdominal cramping. NOT good when you have an important union meeting to attend and can't leave the bathroom at home. My legs are still twitching right now, and that usually subsides after I've been awake for a few hours. The third thing I noticed was dizziness in a standing position about an hour after I got up. That symptom had nearly disappeared after I discontinued Topamax a month ago, so I'm guessing it's the Zanaflex? ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 13, 2002 |
. . . The place I'm going to on Monday does something called metabolic rehabilitation. It's controversial, but I think I would benefit from it. It combines diet, exercise, supplementation and bodywork with thyroid therapy. I believe that since I can't tolerate most medications I need to strengthen all the other areas of my therapy. The initial evaluation will take at least two hours. It's a very thorough physical exam, which is good because no one has done one since I was diagnosed two and a half years ago. It doesn't make sense that no one is bothering to find out why I'm getting worse and worse. I hope the lady I'm seeing on Monday will be able to help me . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 19, 2002 |
. . . . I'm lucky enough to have not caught Dan's bronchitis and in fact haven't gotten even a sniffle. After that evil ear infection that made me so sick in April, I added a supplement of grapeseed extract to the Vitamin C and Vitamin E I was taking. It seems to really be making a difference. I take 100mg every day. I think the changes in my diet have been benefiting me too. I gave up nearly all sugar except fruit and have limited breads to no more than two servings per day. I haven't had any chocolate, cookies, candy, cake or pop since May! . . . As you've probably figured out, I'm doing great mentally but horribly physically. I've missed some work because I was so exhausted I literally couldn't get out of bed, and I'm experiencing pain at a level that would send most people to the ER. I can barely walk. Luckily, I have FINALLY found good doctors and believe I have found two reasons that I have gotten so incredibly sick in the past year. One is a thyroid problem not helped by my current medication; I am switching to a more appropriate medicine probably next week and should see a decrease in fatigue in another two weeks or so. The other problem is that I have a disease called Chronic Myofascial Pain, something I was just diagnosed with on Monday. It involves trigger points in the muscles that restrict proper functioning and is aggravated by exercise, whereas fibromyalgia is supposed to be helped by exercise. . . . I begin myofascial therapy in three weeks. I hope to be feeling much better by Thanksgiving. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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October 28, 2002 |
. . . . I'm extremely fatigued tonight, a lot more so than last night, but I hope it is just a temporary setback while I'm adjusting to this new thyroid stuff. Thyroid treatment is tricky, but I'd rather start conservatively because overtreatment can be dangerous. . . . . Ambien makes me pretty much unconscious for six hours after I take it, UNLESS my pain is quite severe, like recently. My new primary care suggested that I consider Wellbutrin as it is supposed to help dopamine levels more than the other anti-depressants, and I believe my dopamine levels got pretty screwed up after taking Paxil. I told her I'd like to avoid all anti-depressants for the time being as my "mystery" muscle spasms get progressively worse every time I take a new med like that. I have new twitches in my left eye muscles that started when I tried Zanaflex a few weeks ago; I don't know if they'll ever stop even though I only took the Zanaflex for five days. . . . . One thing that really aggravates me about the medical profession is their persistence in the belief that just because a certain med or procedure helped other fibro patients, they expect it to be a miracle cure for you too, even when you tell them that you already tried what they are proposing and all it did is make you worse. The problem with fibro is that because it affects the brain and thus the whole body, different sets of neurotransmitters are affected in different ways in each patient. One needs a serotonin boost while another gets serotonin syndrome from the same med. One needs Parkinson's medication while another is completely unaffected by it. One needs enough pain meds to kill a horse while another needs a tenth of a normal dose. I am becoming a big believer in the importance of each person finding out what their perpetuating factors are and tackling them the best they can. I wish the medical world would become more educated about CMP. I believe many docs are making their patients worse by forcing them to exercise more or get the wrong kind of physical therapy when they have trigger points. My rheumy was so busy chewing me out for exercising less that he wouldn't listen when I told him that I needed to get my thyroid and myofascial problems resolved first. . . . . Haven't resorted to counseling, but I haven't ruled it out either. If I get depressed in a major way or for more than a week or two, I'll definitely pursue it. For now I seem to get by all right without it (at least most of the time). One thing I am going to do for myself is stick with the myofascial therapy for as long as it takes . . . . . I believe that getting the knots out of my back, feet, arms and neck once and for all is going to be the key to improvement for me . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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December 12, 2002 |
. . . . I bought a book on trigger points and found that there are not one but several of them that cause migraine in CMP, in addition to hormones and such. I probably have more than one trigger point at fault, but I think I may have figured out the worst culprit. It's on the collarbone, actually, in an area that hurts so bad I can't even touch it. This muscle travels from the front of the neck up the side to connect in the back, and the pain refers all the way to the eye area. I probably won't get to that one for awhile. At my last visit to myofascial therapy, I was shocked to discover that a nine-year-old injury from a car wreck that the physical therapist told me was permanent was in fact just a trigger point. I've had burning pain down the outside of my left arm since October 1993, and now it's gone! Woo hoo! I now believe that I've had CMP longer than I've had fibro. I still need work on the top and front of that shoulder, particularly since I injured it yesterday in my little dog-walking mishap. . . . . I am feeling pretty decent finally, but not great yet. I am definitely improved from two months ago, but not nearly as well as I was just a year and a half ago. I have not fallen asleep at work in a whole week, which is something, and I am not struggling to maintain emotional equilibrium like I was. My pain level has changed; that body-wide constant pain is down to about a 5 from a 10, but individual areas now hurt more with movement than they used to. I believe that is because the body-wide pain had been so bad that it drowned out the pain signals from trigger points and daily activity. In time, I think the trigger point pain will go down to a dull roar too. . . . . I have felt for a long time that I was on the right track with my magnesium supplementation. It definitely makes my constant muscle spasms less likely to turn into cramps; in my case, though, the spasms are not relieved, I think because they are not due to fibromyalgia . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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December 26, 2002 Fibrohugs post |
Why December 26th is special to me . . . . . . . . seven years ago, on December 26th, Dan and I went on our first date! We went to a chicken restaurant and talked for a few hours. After he took me back home, he proposed! I accepted, but we didn't make our engagement official for another eight months..... So, to celebrate the anniversary of our first date, we usually go someplace for lunch on December 26th (the restaurant we originally went to is gone now). I slept too late today for us to go to a fancy restaurant before work, so we just went to a casual California-style Mexican place that we frequent. I did at least fix my hair, put on some makeup and dress in something a little more form-fitting than I usually wear, so it did feel more like a date . . . . . Dan not only remembers our first date, he remembers what I WORE that day! Am I lucky or what? ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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December 27, 2002 Fibrohugs post |
Christmas sleep-a-thon! Actually, this started Christmas morning. I was supposed to get up at (gulp) 7am, but when I turned off that alarm, I couldn't move from that bed! I tried and tried, but was so exhausted that it was 8:30 before I succeeded in getting up. By then, it was only half an hour before I was supposed to leave for my dad's house, so Dan and I had to wait to see what Santa had left in our stockings until after we got off work.... We got to my dad's only 15 minutes late, which wasn't bad considering how much trouble I was having getting moving (and how bad my IBS was). I thought I was going to pull through ok until we had finished opening gifts and had started preparing dinner. Then that familiar "I've been hit by the exhaustion freight train" feeling came over me. Eating a meal helped for about 15 minutes or so. Dan had to drive us back to the house to get ready for work because I simply could not stay awake. I'm not sure how I got through my shift without dozing off, but I did. The minute I got in the car to go home, though...zzzzzzz. I didn't even get near the computer at home, I was such a zombie. I was in bed by 2:30am (only an hour after we get home from work). Someone called this morning at 11am, and I even talked to them, but I don't remember who it was, I was so wiped out. I tried getting up after that with no success. Guess when I finally got up today? 2pm! And yep, I'm STILL tired! Wish I could blame it on overdoing it, but I really can't. I did no holiday cooking, very little shopping or decorating and no long trips. I stuck to my usual routine and diet for the most part too (I thought my stepmother was going to pass out when I refused all candy, pie, soda pop, alcohol and cookies!). I even tried to get extra rest prior to this week. I'm guessing that this would probably have happened no matter what. I hope it passes soon! I feel like a bear trying to fight winter hibernation. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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December 31, 2002 Fibrohugs post |
I've got the all-over ITCHIES!! It's never been this bad before! Got much worse at the same time my exhaustion escalated, so I wonder if they're related. I couldn't sleep last night, I itched so bad . . . . .my scalp, my legs, my back, EVERYWHERE! When I did finally catch a few winks, I woke up with cuts on my shoulders from scratching in my sleep! It's like an attack of some kind . . . . one minute I'll be fine, the next, I have to sit on my hands to keep from scratching! I don't actually have rashes anywhere but my face and arms, so I'm not sure why everything else itches too. I had Dan put hydrocortisone all over my upper back today so I wouldn't go crazy. I slather lotion periodically as many places as I can reach . . . . it softens the skin nicely, but the itching doesn't diminish much. I've noticed that it does get better whenever I raise my dose of thyroid hormone, so there's probably some connection there? Perhaps when I get that situation straightened out, this will be resolved too. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 1, 2003 Fibrohugs post |
Here is the letter I will be mailing to President Bush on January 2nd . . . Dear Mr. President: . . . . I am 38 years old . . . For the past five and a half years, I have suffered from a disorder called fibromyalgia. Prior to my succumbing to this illness, I was healthy, productive and active. Now I am constantly fighting to avoid becoming completely disabled. Because fibromyalgia is an invisible chronic illness, it is easily misunderstood and all too often ignored. It is a disorder of the neurotransmitters, and as such, it may cause a baffling array of symptoms resembling a number of diseases. Therefore, it is a diagnosis of exclusion, and the typical fibromyalgia patient has been ill for years before they are diagnosed. By that time, they may have been labeled as lazy by their family members, malingerers by their employers, and hypochondriacs by their doctors. Most people who have fibromyalgia are none of these things and would very much like to recover even though at this time, there is no cure. While fibromyalgia is not life-threatening or degenerative, the symptoms are often numerous and intense enough to become disabling. Muscle, joint and nerve pain are felt throughout the body as though one had a head-to-toe migraine. When left untreated, this pain can lead to impaired immune function and an increase in allodynia, a condition in which normally innocuous stimuli such as light and sound causes physical pain. Fibromyalgia also involves chronic Stage 4 sleep deprivation. This stage is essential for bodily healing and neurotransmitter restoration. The price one pays for non-refreshing sleep can be a heavy one; the overwhelming exhaustion that results impairs our ability to do anything that requires alertness, such as working, driving a car, or looking after a young child. Our cognitive function can suffer greatly, causing us to make 'careless' mistakes at our jobs, to have trouble speaking and writing clearly, and even to get lost driving in our own neighborhoods. Because fibromyalgia is a systemic disorder, there are many other associated symptoms including: digestive troubles, chronic headaches, skin and eye problems and heat or cold intolerance, to name just a few. Fibromyalgia is not rare; over 11 million people in the U.S. alone suffer from it. Yet there is no government funded research happening to help these people. We are left with no concensus as to the exact cause, no treatment specifically targeted for fibromyalgia management, and no known cure. Great strides in the field of medicine have been made recently, and I am confident such progress can also be made to improve the lives and livlihood of fibromyalgia sufferers. Properly funded research could reveal ways to diminish our pain and fatigue enough to allow us to return to our previous level of function and productivity. The relief from emotional and financial burdens for people who have fibromyalgia and their families would be enormous. Won't you please promote government funding for research? Eleven million Americans are hoping you'll say yes. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 5, 2003 |
. . . . I've been having massive fatigue 'attacks' since Christmas, accompanied by emotional upset, nausea, sometimes vomiting, IBS escalation and dizziness. Every one I get is worse than the last one. I'm having trouble getting out of bed due to the fatigue again . . . instead of sleeping 7-9 hours, I'm sleeping up to 12! This is not me at all! . . . . I need to get to the bottom of this. I'm going to have my adrenal gland tested next week anyway, which is good because these are also signs of adrenal insufficiency. Of course, if that were the case, I'd also be losing weight, and THAT'S certainly not the case! . . . . I guess it doesn't hurt to make sure. If I can't get this sorted out, it may be time to see an endocrinologist . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 14, 2003 Fibrohugs post |
The end of the Claritin saga . . . . . . Claritin products are now over the counter rather than by prescription only. While this does make them available to more people, it also is no longer covered by insurance. In my case, the over the counter cost was triple what my insurance co-pay had been. Luckily, my ENT's office let me try samples of another med, Allegra D, which is still prescription only. I tried it for five days and couldn't tell the difference between it and the Claritin, meaning that it worked for me. So today I had the ENT phone in a script for it to the pharmacy. Yay! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 16, 2003 Fibrohugs post |
The cost of fibro (for one year, with insurance, American dollars) . . . . . . . while waiting for my phone line to come back up last night, I decided to gather materials I'll need for filing my taxes in a few weeks (I always file as fast as possible when I'm expecting a refund). Going over the checks for 2002, I was surprised how many of them had been written for health care. I became curious and decided to see how much I had spent on treating my fibro and related health problems during the year. Here's what I came up with. For clarity, I've included in parentheses which expenses were out of pocket and which were merely insurance co-pays. Massage therapy... $270 (not covered) Supplements... $1598.58 (not covered) Fibro clinic, including myofascial therapy... $1310 (not covered) Pain management doctor... $945 (not covered) Allergy shots/ENT... $530 (co-pays) Gyno... $20 (co-pays) Rheumy... $30 (co-pays) Primary care docs... $250 (co-pays) Chiropractic... $175 (not covered) Claritin... $192 (co-pays) Beconase... $192 (co-pays) Ortho Cyclen for estrogen therapy... $256 (co-pays) Topamax... $160 (co-pays) Thyroid meds...$128 (co-pays) Sleep aids... $176 (co-pays) Other meds... $80 (co-pays) GRAND TOTAL for 2002: $6312.58 I realize that I am indeed most fortunate to have insurance as well as a job so I can keep that insurance. . . . I can spare the expense. I figure my expenses were . . . . probably much higher than for people without an invisible chronic illness . . . . I have half a mind to pass this info along to my local elected officials, especially the ones who think middle class Americans can easily afford their health care. I'd like to see some of them spend nearly a fourth of their pay on it . . . . I'll close by saying that I hope this is the year the medical world finds a cure or at least effective treatment for fibro. I still do plan on sending letters to my senators and congress people telling them about Fibromyalgia Awareness Day and urging them to support funding for research. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 17, 2003 Fibrohugs post |
The migraine monster has been parading around most shamefully . . . . . . . I woke up with mine, which really bummed me out. Usually they arrive during the course of the day and I go to bed to get rid of them. When I start out with one, though, it's all downhill from there. I forgot to bring anything with me to work to treat it with, too. As a result, between the headache and the prevailing dizziness and nausea of late, I nearly passed out tonight, which I hope nobody saw. Sigh. I did my usual treatments as soon as I got home (Migra Spray, Migraine Ice on the forehead and a hot pack on the back of the neck) and now have it down to a dull roar. Heard at work tonight that they want to buy us all out in my department. This is quite unexpected as the agency had said there would be no more buyouts and we were expecting to negotiate our job duties to little or no layoffs. In fact, up until tonight I had been confident my employer would be keeping me on for years; I had received many such assurances from my union. Now I am starting to get upset about the layoff deadline of next week, but am afraid to tell Dan this because we both work there, and I'd been promising him for so long that we would be fine, so neither of us has looked for another job. I have absolutely no idea what else to do for work as the employment situation here is quite a bit worse here than nationally. Even considering yet another job change exhausts me. . . . Most of the people who took the buyout a year ago do not have new jobs yet. I know I can't get by for a year without work, not with my medical bills . . . Not to mention trying to learn a new job in my current state of health. The reason I haven't had to go on disability where I am now is that the work is not terribly physically taxing, requires no overtime and is only 36 hours a week for full time pay and benefits. I'd like very much to just pull the covers over my head and not come out until retirement age. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 18, 2003 Fibrohugs post |
I had a talk with my hubby . . . . . . . turns out Dan was just as concerned about us possibly losing our jobs as I am. Actually, he brought it up. We came to a few decisions . . . . Dan is going to put together a portfolio and start looking for a graphic arts job. I don't know exactly what I want to do yet, but we both think it might be a good idea if I try to get something I can do from home (probably on the computer). Some of the people who were bought out of our department last year were able to get unemployment benefits, so I would look into that, and if we were turned down, we could start temping . . . . One of us being out of work would be a shame, but both of us would be a real problem. It would be doubtful that one of us would be kept and the other let go. It will almost certainly be either both of us allowed to stay or both of us laid off. The agency's contractual obligation ends on Wednesday, but I'm sure that can be extended if no concensus is reached yet in negotiations. I heard no new info today . . . . My migraine was better today, but not completely gone. The dizziness, weakness and nausea have decided to hang around. It is probably what is affecting my state of mind the most. I am very tired of not feeling myself. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 21,2003 |
. . . . I've started some new medication tonight for adrenal support. My test came back in the normal range, but it was at the very low end of normal. For me, that usually indicates a problem. My thyroid test came back normal a year ago despite having a goiter, so it really doesn't take much to throw me out of whack hormonally. Believe it or not, I'm already feeling a little different with the adrenal support, even though I've only taken three pills. The dizziness and overwhelming fatigue are a little less, and it's easier to form a thought because I don't feel so heavy and slow. If I can get this and the thyroid meds balanced properly, I may actually become somewhat functional again. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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January 22, 2003 |
. . . this adrenal supplement is good stuff! I am as close to normal as I have felt in six years! I'm probably operating at about 50percent capacity now versus the 15percent I was at with just the thyroid supplement (and versus the 5percent with no meds). Tomorrow, I'm going to make an appointment with my primary care doc to discuss trying Cytomel. It's a controversial move in the world of medicine, but it may be just what I need. I do wish the medical community would pay more attention to hormonal dysfunction in fibromyalgia and less attention to dispensing anti-depressants like candy. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 1, 2003 Fibrohugs post |
. . . . I'm confronting physical limitation . . . . . . All I know is that a year and a half ago, I wouldn't have given a second thought to doing any of the following: brushing the dog; feeding the dog; making lunch for Dan while making a salad for myself; unloading the dishwasher; washing a few things by hand; rinsing all of the recyclables and putting them in the bin; emptying the trash; moving the trash bin from the curb to the garage; getting Dan pillows, snacks, blankets, meds and such; driving Dan to and from appointments; driving myself to and from work; picking up and sending out the mail; packing my lunch for work; pumping gas. These are all pretty simple activities that most people, even those with fibro, do every day (or a variation thereof). Well, until this week, Dan did them all for me. I didn't think it would be any big deal, just a few extra things here and there, certainly not like I would be overdoing it or anything. Wrong! I'm going to sleep each night utterly wiped out as though I had run a marathon. My muscle spasms have increased as a result of the extra activity and my feet have started flapping around in my sleep again, which hadn't happened in about two months. My feet are now so sore from all the spasms that I can barely put on my most comfy tennis shoes. And this is after my current treatment has cut my pain and fatigue to almost half of what it had been. I can understand me having trouble with yard work, scrubbing the bathtub or long drives, but these are not physically demanding things I am doing. I guess that's why I'm finding it so frustrating. When, two weeks ago, my doc suggested that I take a couple of months off of work to regain some health, I had practically scoffed at her. But the more I think about it, the more plausible the notion becomes . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 11, 2003 |
My insurance will no longer cover massage, chiropractic or physical therapy of any kind for my fibro/CMP. It appears I "used up" all their allowable benefits of that type two years ago. Their official reason for that is that the prior treatments didn't cure me! Duh! They do not see fibro as a permanent condition, and do not acknowledge myofascial pain at all. . . . Still sorting out the sleep thing. It wouldn't be any big deal if it hadn't changed all of a sudden. The first four years I was sick, if I needed to get to an early appointment and only got five hours of sleep, I could get by ok. Then when the thyroid levels changed in October 2001, no amount of sleep was adequate. Now I only feel good if I have nine hours. . . . I'm still playing with the thyroid and adrenal supplement levels, so maybe it will balance out in time. I've got the headache from Hades going on, so I'd better retire for the night. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 18, 2003 Fibrohugs post |
Burned out . . . . I've had fibro for six years and have been attempting to optimize my health for most of that time. What's ironic is that I'm probably at the very end of my "trying new treatments" phase . If this one doesn't work out, I'll go back to the one I was just on and call it good. Part of it might be that I keep feeling better for a day or two and then crashing, so I'll get my hopes up briefly. Part of it might also be the realization that my condition on the previous treatment may have indeed been as good as I get, and that's hard to accept. I'm just so tired and cranky and don't have any more patience, even though I know that a new med can take weeks or even months to get right. And part of the problem I am certain is chemical. Every time I start a new med or switch something around, my incredibly delicate system has major adjustments to make, and my emotions suffer for it at first. I feel like a two-year-old, saying I just want something to work, and I want it now! I fear I may have made a mistake switching to Cytomel. It may be too short-acting for me. I know it's too soon to tell, but the past few days were ok the first several hours after I took it, but by twelve hours later, MAJOR return in pain and all the other symptoms. I just don't feel like me since I started it. I will TRY to be patient and let this work out, but this migraine tonight is a bad one complete with nausea and dizziness, and I hate to think I may have brought it on myself. . . . I'm not mad at anyone, because I know the docs I have now are doing their best, and I have done all of my own research that I can stand. I just have deep emotional exhaustion. Oh, dear, I think I'm gonna hurl. Off to bed with me. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 21, 2003 Fibrohugs post |
If I were going any slower, I'd be going backwards (in some ways, I am) . . . Haven't had a proper night's sleep in a week due to the pain, and today, I couldn't get out of bed without tears. I can barely even walk. What happened was this: I switched from desiccated thyroid hormone to Cytomel. In order to do this, I had to wean off the first and wait until it had left my system before starting the other, because having too much thyroid hormone in your system is dangerous. This usually takes about two weeks. In my case, it happened in less than a week, which surprised everyone including me. The dose of Cytomel I was prescribed was too low, and I crashed. This also surprised me because I am overly sensitive to every other med under the sun. The Cytomel was only helping me for about an hour and a half a day and then began wearing off. By midnight or so, when I was still at work, my pain level would be climbing from a 7 to a 10 because I had no Cytomel left in my system. I look like one of those zombies in "Night of the Living Dead", and feel even worse. Thanks to a cancellation, I was able to get in to see my primary care doc today. She agreed that we need to raise the dose; I'm only on 5mcg right now, and the normal starting dose for someone with known thyroid problems is 25mcg, so I will go up to the 25 starting tomorrow. She also had my T3 level tested to see how much it has changed since the last time, when it was still at the low end of normal despite thyroid therapy. I should know the results by Monday. . . . I have practically microscopic veins, so every time I go to the lab for bloodwork, I tell them to get me a butterfly needle and their best vampire! Anyway, the doc also gave me a script for something for pain because I feel I MUST sleep tonight or go insane. It's one I haven't tried yet. I've been unable to find a pain med yet that I could tolerate, so I hope this works without my usual side effect of vomiting. If it works out, I will keep it on reserve for emergencies. . . . I admit I would feel a lot more comfortable having something on hand "just in case", and should I ever end up having surgery again (I've been putting off a hysterectomy), it would be a godsend if I knew I'd be able to recover on something stronger than OTC Motrin. We'll see. . . . I'm off to try to get some SLEEP. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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February 25, 2003 Fibrohugs post |
Squinting to see the light at the end of the tunnel, even with 20/15 vision . . . Still on the chemical roller coaster. I keep trying to remind myself that the end is in sight, but I keep forgetting. Got my thyroid test results back today . . . still on the low end of normal even after three months of T3/T4 supplementation. That's good in a way because it leaves me some room to increase my dose of Cytomel safely (I've got my doc's ok) as I am still rather sluggish feeling. Not as bad as last week, but barely functional nevertheless. After driving Dan all over the place on Saturday, I could not get my butt moving yesterday at all once I'd finished my usual stretches. I kept telling myself that I needed to get out of my computer chair and do the dishes, but it never happened. I did start a new web page yesterday, so at least I have SOMETHING to show for myself. So I must lecture myself to be patient in between the periods of near-energy and near-collapse. I swear, sometimes I feel like the most biologically sensitive person in the world. I've got a nasty little migraine developing in my right eye. I suspect I may require half a dose of my new-found pain med in order to sleep. Thank goodness I finally have options. I think I'm done rambling now because I cannot remember if I even had a point. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 13, 2003 Fibrohugs post |
Whoops! Too much of a good thing! I had my T3 level tested a week ago to make sure I was on the right dose of Cytomel. I was to hear back on Monday. Well, Monday came and went, and no word, so I figured the test results were within the normal range and that they would mail me a copy of the results for my records. That's what they did last time. I was a bit puzzled, though, by a temporary worsening of my insomnia and an increase in my headaches but vowed to just sit tight and check the mail. By yesterday, though, nothing showed up, so I called the doc's office to find out what was going on. I was told I'd get a call back, but I had to leave for work before that happened. Checked the voice mail from work tonight. My doc had left a message. She had given her staff instructions on Monday to fax the results of the test to my other doc and then return it to her so she could call me to follow up. Well, somebody filed it away instead, and she forgot to call. So imagine my surprise when she said that my T3 was actually too high now! Ack! It wasn't badly above normal range, but I do need to tweak the Cytomel some. If the T3 is too high over a long period of time there is an increased risk of osteoporosis. Trouble is, the doc wants me to take between 50 and 75mcg, and all I have are 25mcg pills. I will call tomorrow and she if she will prescribe 50's and some 5's so I can decrease the dose gradually in increments of 5mcg until I find the lowest dose that still makes me feel decent. I don't want to just drop down suddenly because I am sensitive to every fluctuation in dose. When I was increasing the dose, I did not have any energy until I got up to 60mcg, so I've got an idea that's where I'll be headed. I'm not really mad at the doc's office for not getting a hold of me for so long. I know mistakes can happen. I'm just kind of bummed that I didn't even know I was overdoing it (even though it wasn't by much). Some things make more sense now, like the mysterious intensifying of my migraines. Yesterday, it had gotten so bad that I nearly had to pull off the road on the drive home to hurl. By bedtime, I was moaning in pain and had to resort to my emergency relief method. It helped enough to get me to sleep, but when that alarm went off at 8:30 this morning (had to take Dan in for his MRI), as soon as I stood up, it was back. I dropped Dan off at the front door of the hospital because there was very little parking. I drove round and round in the parking garage and finally squeezed into a tiny space on the fourth level. I got out and was too disoriented to find the elevators, so I ended up taking four circular flights of stairs down to the hospital. By the time I staggered into the waiting area, I was shaking and nauseous. I improved a bit while waiting for Dan's test, but the pain escalated to feeling as though my head had been hit by lightning. The only thing I could think to do that would enable me to work in the evening was to have a nap. I laid down for about two hours. Luckily, this time it faded enough for me to function. It is starting to come back now though. Sometimes I think I have the most sensitive system in the world. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 17, 2003 Fibrohugs post |
Did my IQ drop overnight? Cuz that's the way I'm being treated! Called the doctor's office today to see about getting a refill on my Cytomel in the form of 50mcg tablets and some 5's...the doc had left me a message last night saying my T3 was too high and that I should drop the dose down from 75mcg. I was hoping to decrease it slowly because I'm so sensitive. Well, I found out to my surprise that my doc doesn't work Fridays. I was asked if I could wait until Monday. I said not really, because I've only got a few 25mcg tablets left. The lady who had answered the phone said she'd ask one of the others docs in the office about it. A little while later, I got a call from the other doc. He said he didn't see why I needed to taper the dose as Cytomel is just a thyroid med. I told him that due to my fibromyalgia, I was very sensitive to all meds and might experience side effects if I suddenly dropped the dose from 75 to 50 overnight. He told me that Cytomel isn't for fibromyalgia, it's to treat thyroid disorders, and that he didn't think my doc should have put me on it as it's too hard to get the dose right, that the other meds are better. I informed him that I also have a thyroid disorder, that I had tried Synthroid, Levoxyl and dessicated without success, and that when the thyroid level is off, it makes my fibro worse. He told me that they are two different problems and can't adversely affect one another! He went on to say that he would not authorize a refill on a med I shouldn't even be taking, and that I should just drop down to 50mcg until I could talk with my own doctor. I made a mental note to not go to this guy when my doc is unavailable. What a tard! . . . . I'm afraid that dropping my dose of Cytomel so drastically is going to turn me into a slug again. At least I'll be adjusting it initially over the weekend, so if I feel like crap I can just hibernate. I will be trying to get a hold of my doc on Monday, especially if I feel awful again by then. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 21, 2003 Fibrohugs post |
Digging out: the things we do for meds . . . An amazing thing happened today - the sun came out around noon, and the intersection nearest our house got plowed (only because it's on a bus route). Decided I'd better make sure the drug store was open before we slogged our way over there. Good thing I called. They told me a pharmacist wouldn't be available until 2pm, so we waited until that time to leave the house. Even after all that shoveling yesterday, it was still a bit of a challenge to get the car out onto the street and facing the right direction, but we managed to get rolling. As we approached the drug store, we were surprised to find a stranded SUV in one of the entrances, so we went around the corner to the other entrance. Guess what? There was a van stuck there! We parked next door at a fast food restaurant that had the parking lot plowed, and I hiked my way in. Got there only to find the pharmacy area still locked up! I asked someone in the photo department what was going on, and she told the that the pharmacist was stuck somewhere and couldn't get in. I told her that I'd been out of thyroid meds for three days and was getting desperate. She called one of the other stores in their chain and found that the one about five miles away was open and had their computer system working. To my surprise, they offered to fill my prescription. So we drove out there and found a much better situation - fully staffed even though they had roof damage, and someone was plowing the parking lot when we arrived. AND I only had to wait a few minutes to get my meds. Yay! About half my department managed to get to work tonight, so we were busy. Most of us who made it there were stiff and sore from snow shoveling. I guess misery loves company. And for a nice welcome back I found out that the other union we work with is having a meeting about possible layoffs. Sigh. Officially my part of town got 40 inches of snow, the second highest from a single storm on record. Sadly, five people have died as a result of this storm - two in traffic accidents, one from exposure, one man actually died from a heart attack right after shoveling his driveway, and one man who was using a snowmobile to get out to help his stranded neighbors got hit by a pickup. Over 200 buildings have either collapsed or suffered structural damage. And we had to drive carefully on the way to work to avoid broken tree branches scattered everywhere. Some trees have actually split in half. Surreal experience. Guess I'd best not stay up too late. I have to re-schedule two doc appointments tomorrow if their offices have re-opened. I also need to pack for my weekend getaway! Yay! ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 26, 2003 Fibrohugs post |
Need a hug. Can't tell if I'm having a reaction or coming down with something I'm weakly waving the white flag tonight. Have had a headache since Monday morning. Nothing is making it stop, not even Dilaudid. Started feeling wobbly and disoriented this afternoon but hoped it would pass. Thought having some lunch would help. Nope, all it did was make me nauseous. By the time I got to work, I was alternating between burning up and freezing every five minutes. Before I even got one ad done, I starting throwing up and had to turn around and come home. This is how I usually feel when I'm having a reaction to a med, but the only thing that's fairly new is the Cytomel, and reactions to that are pretty much unheard of. I suppose I could have caught a virus. I have my next doc appointment April 3rd, and will ask if the headaches could be from Cytomel. Perhaps I should be on Armour after all. The fibro has me discouraged right now . . . . My union has contacted the National Labor Relations Board to file a grievance against my employer for unfair labor practice. The layoffs the agency announced are only part of the grievance. The rest involves contract violations that have been going on for two years. We had been in negotiations with the agency to try and solve the problem since November but recently reached an impasse. The layoffs may still happen, but we are hoping the agency will now decide to go about this in the manner they originally agreed to so it will be more fair to all involved. I must go lay down. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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March 29, 2003 Fibrohugs post |
My body seems to have the "grumblies" today . . . . I've got canker sores and a yeast infection going on at the same time . . . Tonight my eyes were driving me crazy. They often feel as though they have sand in them, but I couldn't make the feeling go away tonight no matter how many eyedrops I used. I've also been drinking a ton of water because my mouth is even drier than usual. My all-over itchies have resumed. The rashes on my arms are gone, but Dan is noticing scratches on me again, meaning I must be scratching in my sleep. The headache from earlier in the week has returned (although not as bad as before, thank goodness) and so has some of the fatigue. And if all this weren't entertaining enough, my IBS went to both extremes today. At work tonight, I was frantically searching my purse for Imodium and finding none. Did my body go on strike without my permission? I'm fed up. I think I will call my primary care doc's office on Monday and see if I can get in. If nothing else, I need to take care of the yeast infection because the OTC stuff ain't working. And this canker sore must be on a nerve or something because it HURTS! And while I'm there, I may ask if I could have a problem besides fibro and thyroid junk going on, just to make sure I'm not overlooking something. I've had all these troubles at one time or another, but they seem to be ganging up on me the past few weeks or so. Sorry to be so grouchy. On the bright side, I do have plans for this weekend, which may take my mind off some of this a bit. Tomorrow, I'm getting together with my sister, dad and stepmother, and we're going to try a new Asian restaurant. Then on Sunday, Dan and I get to go to a dinner theatre courtesy of a gift certificate I got for my birthday. I love going to any sort of theatre but will seldom buy myself a ticket. I will make sure I bring a ton of eyedrops with me . . . . ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 2, 2003 Fibrohugs post |
Gonna see the doc tomorrow . . . . . . about these weird symptoms I'm having that are getting worse by the day. The dry eyes, mouth sores, yeast infection, itchy skin and nausea are conspiring to drive me crazy! Ok, so it's a short drive. And now I'm having occasional trouble swallowing dry foods and have developed a slight cough. I am going to tell her I think I need to be tested for Sjogren's syndrome. I could be wrong and jumping to conclusions, but the worse I feel, the more convinced I am that it would be a good idea to rule this out. I also plan to ask her about switching back to the dessicated thyroid hormone as the Cytomel is aggravating my insomnia, even at the lowered doses. I'm nervous about "wearing out my welcome" with this doc as I have seen her so many times in the past two months. I don't want to be a pest or come across as a hypochondriac. I did type up a list of my symptoms and printed out an article on Sjogren's from the National Institutes of Health to bring with me. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 3, 2003 Fibrohugs post |
Odd doctor's visit . . . I brought in my list of symptoms so I wouldn't forget anything. The doc said that I could indeed have Sjogren's, but it probably wasn't worthwhile to test me for it since very little could be done about it. After she got a good look at the sores in my mouth, though, she agreed to do some bloodwork. She reminded me that people with chronic fatigue are unusually susceptible to infections, but wanted to make sure I didn't have something called Behcet's Disease, which is a very rare autoimmune disorder that causes inflamed blood vessels throughout the body. We both agreed that it would be a good idea to switch back to the dessicated thyroid hormone. Three weeks ago, I had blood pressure of 90/60 and a resting pulse of 70; today, the blood pressure was up to 140/95 and the pulse was 100. The dessicated has a more subtle effect on me, I think because it's natural. I usually tolerate natural products better than ones created in a lab. I looked up Behcet's Disease on the internet tonight. Even though I have had many of the problems associated with it including the odd ones like meningitis, I doubt I have it. There are only 20,000 people in the U.S. with this, and it usually strikes people of Asian descent. I'm glad the doc is checking, though, because it can cause things like blindness and stroke if not managed. I'm still leaning toward Sjogren's because it's not uncommon for people with fibro and thyroid disease. The doc did suggest I consult an opthalmologist about the dry eyes, so I will make an appointment with my current one and see if he wants to run any tests. I may also see the rheumy about this. I don't know if it's my imagination or what, but my pain level seems to be increasing in concert with the mouth, eye and other symptoms. Better go try to get some sleep. I have myofascial therapy in the morning. I did sleep well last night but did not feel rested. Had grisly nightmares that someone or something was trying to kill me. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 5, 2003 Fibrohugs post |
Ok, I'm officially stressed out now . . . . . . . . amazing how I can go from effective stress management to absolutely no coping skills in only a few days. I started the week with increased pain, fatigue, insomnia and even palpitations due to problems with the Cytomel, but I simply decreased the dose slightly and decided to sort it out with the docs later. I dealt with the heightened tension at my job (due to possible impending layoffs) with humor and sarcasm and otherwise functioned normally. The recent escalation of dry eyes, mouth sores, yeast infection, problems swallowing, nausea, etc. was troublesome, but I figured there had to be a good reason for it and made an appointment with my primary care doc for Wednesday. I can't really say I was having any fun, but I was handling it in a reasonably sane manner. Then things began to unravel, or rather, I did. First, the doc visit didn't quite go as I expected when she said there wasn't any point in testing for Sjogren's. I had to talk her into it. My first thought then was, oh no, not again. I had to go through this kind of crap first with the fibro and then with the thyroid. I began to wonder why I couldn't come down with an illness that docs were interested in treating, or even one that had a cure. I tried to put that kind of thinking out of my head and go to work even though I didn't feel up to it. Dan had called in sick because he had two crowns put in earlier that day and one of them didn't fit and the dental assistant tried to force it to fit without any Novacaine or anything. So one of us missing work was going to be expensive enough. That was Wednesday. That night I had several nightmares about being killed, like unseen hands coming up out of the waterbed and strangling me or coming out of the bathroom wall to try to disembowel me. Yesterday wasn't that bad to start with. I went to myofascial therapy and had a chiropractic adjustment. I must have really needed them. I hadn't realized how awful my pain had been until it went down a notch, escpeciallly the headache. So I was in a positive frame of mind until I came home and Dan was all hostile toward me, picking a fight and just being nasty. One of the downsides of working with your hubby is that you can't just go somewhere else when you argue, so the ride to work did not start off well. Finally Dan admitted that he was extemely stressed out about our jobs and the horrible local economy making it difficult to find anything else that pays worth a da*n. I assured him that things weren't as dire as all that, but somewhere in the back of my mind I began to worry too even though there was no logic to it. Last night's shift seemed to last forever with my eyes, mouth and throat burning like crazy and me not knowing for sure why and wondering if it was serious. Then when I got home, I found a phone message saying that my bloodwork showed no sign of any disease. I was relieved in one sense but quite upset in another because I had no explanation as to what might be causing these problems. That was Thursday. Last night I was plagued with horrible muscle cramps practically everywhere from the waist down. I had to get up several times to soak in hot water, try to walk the knots out, and to apply Mineral Ice. I had planned to get several things done today, but when the muscle cramps finally resolved, I was so exhausted that I didn't wake up until 2pm. Even though I didn't really have time, I decided to walk the dog because if I didn't my leg muscles would seize up at work and cause me all kinds of trouble. It was horribly windy outside with gusts of 60mph. I wore my sunglasses to try to keep dirt out of my eyes, but I didn't expect that the wind would bother anything else. By the time I got halfway out there, every time I inhaled, my throat burned. My lips cracked even with Carmex on them, and my face chapped. When I got home, I was horribly thirsty. I gulped water like a camel who has been in the desert for six months. I made an appointment with my opthalmologist for Monday. I skipped my normal Cytomel dose as I am to start Armour over the weekend and can't have too much T3 in my system all at once as it will have a negative effect. I got worse at work, where the fluorescent lighting turned my stomach. So I was not in the bed of moods when one of my supervisors picked a fight with me and told me that what I was doing right then was all wrong. I normally just say something brief in my own defense and otherwise blow him off and get on with my work, but I turned on him tonight and got very loud. I complained bitterly even after he left the area and sulked as I went back to what I'd been doing. A few minutes after that, the foreman held a meeting. He announced that the digital processing area where I do most of my work was no longer going to be used and that as of Monday, we would all be in the main ad building area. I build ads during at least part of every week but usually take it over to the digital area because the lighting is acceptable there. The ad building area is like a cave. Most of the lights are burned out, and if I do computer work with inadequate lighting, I get migraines. The department head's solution to this is to put a little lamp over the monitor. Just what I need, a light bulb in my face. This is the same woman that I had to fight for months to get ergonomic work stations installed six years ago after I developed carpal tunnel, not just to benefit me but also the six other people who had to wear wrist splints (none of them do now thanks to the changes). I began to feel overwhelmed by the constraints of my illness and bitter about the possiblilty of having to fight for a proper workstation again. The foreman also reminded us of a major procedural change that had supposedly been implemented a week ago. This was the first I'd heard of it, and I'd been doing stuff wrong all night! Ack! He also told us of a union meeting on Sunday about the suit filed with the labor board and made some joke comment about the people facing layoffs that I thought was rude. I looked over at one of the people in question an noticed she wasn't laughing. After the meeting, I went to her and very quietly told her I would do whatever I could to help keep her job. Right about then, the lack of thyroid hormone in my system hit me, and I had to fight tears. I managed to get to the bathroom before I began balling like a baby. I just couldn't take any more sh*t from anyone. I was aware that I was over-reacting to a few things, but I was helpless to stop crying. I finally went to Dan and told him I had to go home. I'm still pretty weepy, even though I took something for the nausea and the eyes and burning throat aren't nearly as bad at home as at work (better air here, I suspect). I know tomorrow will be a better day as I will start the Armour and having gotten a lot out of my system by typing this. Right now, though, I just feel defeated. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 6, 2003 Fibrohugs post |
Mentally I'm fine, but physically I'm a disaster Part of this may have something to do with my changing thyroid meds. I'm on just a starting dose of Armour, probably only a fourth of what I'll end up taking. The reason is that I had to ease off the Cytomel, and if I took a full dose of Armour too soon, I would be overstimulated (although that sounds pretty good and maybe even a little dirty right now!). So I expected to feel a little bit out of it this weekend. My fatigue level today is twice what it was yesterday, but I'm not getting slammed too hard with depression or headache like with the Cytomel, at least not yet. I'm supposed to get a call tomorrow as to what I'll be raising my dose to. I've got two docs discussing it. What's weird is the stiffness. It started Friday in my knees and made climbing stairs difficult. Then yesterday my hands got into the act. This morning before I even got out of bed, I could feel it in my back too. I have a small level of stiffness on a regular basis anyway (but no arthritis) that usually wears off after I've been awake for about two hours. This felt different because it wasn't accompanied by that much pain. Usually a high pain level makes it difficult to move, not the other way around. This didn't wear off, either. Even after a hot shower, my toes and hips got stiff. Now my neck is getting that way too. I hope it's just a thyroid thing and wears off when I get on the right dose, but I wonder. Had a union meeting today. Boy, was I getting some funny looks as I hobbled around since I wasn't having much mobilty trouble at work Friday night. The subject was layoffs and the suit that was filed with the Labor Board. The discussion went over two hours and included plenty of yelling (even did some of my own). The union is going to a meeting with my employer tomorrow to try to get them to hold off on layoffs for two months while an investigation of contract violations can be done. I will know more tomorrow night. I am glad I was there and that I offered my two cent's worth but am quite exhausted now. Good news. Dan has a possible lead on a new job. An ex-coworker of ours is now a graphic artist for a local school district and has inside information that her employer will be hiring next month for a new position similar to hers. She said she'd put in a good word for Dan once they are officially hiring. It would be a significant pay cut but good benefits and work environment. Dan's worried about the money, but I'm worried about him being miserable staying where he is. We can get by on less if I can stay on with the agency. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 7, 2003 Fibrohugs post |
Stuggling hard to maintain a positive attitude; circumstances are making it difficult . . . . Went to the opthalmologist about the dry eye thing this morning. Perhaps I shouldn't have told him the bloodwork for Sjogren's was negative because he decided then that I couldn't have it and didn't think additional testing was necessary. He did ask if I was diabetic, though. I assured him that my blood sugar was actually good. He reminded me that I had once been borderline diabetic (true) and would have to be extra careful because diabetes affects the eyes. He did take a look at my eyes and was surprised how dry they were. I've been going to him for four years, and he'd never seen them that bad before. His solution was to put plugs in my eyes to stop the tears from draining into my sinus cavity. I also got the name of an ointment to put in my eyes at bedtime and was told to use a humidifier (which is actually a good idea in this climate). I neglected to ask him how long before the plugs help. They seem to keep the moisture from the eyedrops a little longer, but now my eyes just get dry after 20 minutes instead of 5. I'll use the ointment tonight to see if there's improvement, and look for a humidifier tomorrow. Called the dentist's office about the dry mouth and was told to consult my primary care about it. I said I already had and had been told nothing could be done. I was told I'd get a call back. Nothing so far. Went to work tonight and tried to find an adequate workstation in the area I was told I must move to. There was one with a lamp attached to the top of the monitor, the company nurse's idea of providing adequate light in a room that has many of the overhead fluorescent lights either burned out or missing bulbs. The problem was that once you sat down, you had a light bulb from the lamp right in your eyes, and if you turned it so that it wouldn't blind you, it didn't illuminate the workstation at all. Poor substitute for the ergonomically correct, properly lit workstation I'd been using for the past two years which now sits empty. I am trying to be cooperative, though, so I gave it a go. Thanks to the myofascial work I've been doing, I didn't get a migraine right away like usual. It took two hours for the pain to start and another hour for the nausea to get bad. I had to call it quits after another hour. The chair was killing my back, I felt like I was breathing fire, my eyes were burning, and I was trying like hell not to puke from the migraine. I went and told the foreman that this was unacceptable. He said that he couldn't give me special treatment and that I was the only one to complain about the lighting. He was also adamant that I not go back to my old work station, even though I could easily take the work back and forth. He said he wouldn't do anything about the situation until I had talked to the company nurse. There is no nice way to put it. The company nurse is a b*tch. She has gotten awards from the company for reducing worker comp claims. That's because she won't acknowledge any of them! On a personal note, she once mistook me for Dan's mother! I'm only seven years older than Dan. So tomorrow I will have her sit under that lamp and shine it right in her beady little eyes if I can get away with it. I don't feel I'm asking for special treatment. I just want them to replace some d*mn burned out overhead lights! If we can't reach an agreement, I will ask my foreman to let me work in my old area, and if he refuses, I'm contacting a union rep. Our contract has specifications about working condiitions. It may meet OSHA standards, but it isn't up to human standards . . . . I just don't understand why this has to be an issue when the problem was solved two years ago. Anyway, I had to come home and take a Dilaudid, and I'm waiting for it to take effect. I also have to drive back to work in an hour to pick up Dan, but I don't mind because I should feel better by then. Believe it or not, even the tiny dose of Armour I'm on so far (and no, the doc didn't contact me today like she said she would) has greatly improved my mental state. I don't know why Cytomel didn't, but I appreciate the improvement. I just wish the outside world and my body would be a little more cooperative. I do so want to be better. . . . . Ah, the Dilaudid is starting to work. Thank heavens. I wonder if I should try some crackers or something now? I really am trying not to be a drama queen. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 9, 2003 Fibrohugs post |
Reporting from Chaos Central . . . Man, I hate office politics, but I seem to have been swept into some. Tried another workstation in the area I've been transferred to where the lighting was a little better. Had to ask the person who usually sits there to move. Got another migraine, but this one wasn't as bad as last night, so I didn't go home sick. The nurse I was supposed to meet with didn't show. The foreman decided I should meet with the nurse and one of the department supervisors before my shift starts tomorrow. This seems like a waste of company time and money when my previous well-lit workstation sits abandoned in the next room. I'm not the only one dissatisfied with this arrangement or the impending layoffs. One of my co-workers showed up tonight all in black and wearing a t-shirt with his employee number on it meant to resemble a prison uniform! At lunch break tonight, I found out from this person that the real reason our work area had been dissolved was the foreman's way of "punishing" us for what he perceived as reduced work output. A supervisor had been telling him that we weren't doing our share (a blatant lie), and he chose to believe it. Of course, when I asked the foreman, he said that our former duties were no longer necessary, another lie. As soon as I finished my assigned work tonight, I had a talk with my union rep, who confirmed that some of them employees are so afraid of losing their jobs that they are making up stories about their co-workers in the hope that the co-worker will be fired, making their own job will be more secure. He also confirmed that I am one of the people being preyed upon because I don't "brown nose". This information comes at a particularly bad time as I'm so ill right now I can barely get around. All is not lost, though. I am in a union, so there are limits to how much I can be harrassed. There are mainly three people who don't like me out of the 60 or so who work in my building's department. The rest think I'm just fine. I will just be extra careful to follow every instruction to the letter and not make any dumb mistakes so there won't be anything I can get disciplined for. The one who has been lying about me has nearly been fired twice because of his big mouth since I started working there, and eventually he'll self-destruct. The only thing I'm unsure of is whether I'll have the patience to wait until that happens. In the meantime, I am soooo sick. I need to go to bed so I can try to reach the primary care doc's office tomorrow about the thyroid med. I plan to call the rheumy's office tomorrow too. I hope I don't have to wait a month to see him like usual. I'm supposed to go to South Dakota with Dan next week, and I don't know how I'll do it feeling as I do now. That's my report from Camp Chaos. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 17, 2003 Journal entry |
I dreamed I was an elderly lady with MS living on a massive estate in rural Colorado that had been in my family for generations. Half of the property was being used as a luxury resort hotel, and the other half was my home. The portion I was living in resembled an old farmhouse, spacious but simple. Most of the rooms had furnishings that had probably not been updated since the 1950's. Some rooms, though, had once been part of the hotel and held some surprises, like the indoor pool and fountain that was in the process of being restored. Other rooms were full of treasures, antiquities I had collected all over the world in my travels. In spite of my MS, I had managed to visit Africa, Italy, Greece, Japan, etc. and had artifacts and books overflowing display cases and shelves. I showed a few of those to some relatives who were visiting, but they weren't nearly as interested in them as I was. They wanted to talk to Dan and go to dinner or something. Once they started conversing with Dan, though, I was very tired and wanted to go back to bed. I was trying to figure out a subtle way to do this when I noticed a younger version of myself sitting with the couple who were talking. She looked exactly as I had at about age 12, plain brown hair in braids, thick crooked glasses, braces, skinny, scabs on her knees. She was holding a huge book in her hands and was looking exquisitely bored with the conversation. I said to her, "Why don't you go for a walk out back? There are several acres out behind the house, and the deer are so tame they'll practically eat out of your hand. You can also find plenty of places to read your book." The younger me smiled, hopped off the couch, and skipped off with her book. Then I woke up. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 28. 2003 Fibrohugs post |
Hurry up and wait and whimper . . . My rheumy appointment this afternoon was no better than I expected but far less than I had hoped. I presented him with my list of symptoms that are new or have grown worse in the past month. He did take an interest in it, but when he saw that all my bloodwork was normal, he said that he doubted I had any autoimmune or inflammatory disease. He said that if it would make me feel better, I could go back to my ENT and have the lip biopsy for Sjogren's but that he wouldn't order any such test. He did check my joints pretty thoroughly and noted the increased pain in them compared to my last visit in February but did not see any significant swelling. He reminded me that previous meds we had tried (over two years ago) did nothing for my fibro pain but asked me if I wanted to try a new anti-inflammatory since the nature of my pain had changed (nearly all joint pain now and very little fibro pain). I agreed to give it a trial of eight weeks (can't remember the name of the med right now; haven't filled it yet). So tomorrow I'll be calling the ENT's office again, hoping desperately I can get in quickly. The average wait time for him is one to three months. Dan asked me how I was going to get by while I waited for the test. I had to admit I didn't feel like I could stand another day like this, much less being kept in suspense for possibly several more weeks. All my mental energy evaporated during the drive to work, and I wondered where I would get the strength for tonight's shift. My employer did indeed lay off 10 co-workers in my department last week when Dan and I were in South Dakota. The ones from our union are listed as contested, meaning that we have filed a formal protest against it. The lighting situation in the work area to which I've been assigned was not resolved as promised, so I went back to my old desk. A new hard drive had been installed in my absence, so my personal files have all been erased. Some of the software I use to troubleshoot ads has been removed as well as a much-needed extension in the application we use to process digital files. So, basically, I can no longer correct any mistakes in an ad or rebuild an ad that has changes requested by the customer. What a welcome back. It's so nice to be needed. I said as little as I could get away with tonight and tried not to make eye contact with anyone or let on how horrendously I hurt. I didn't mention to anyone, not even Dan, that my mom died six years ago today and I couldn't even make it to the cemetery to bring flowers. I've got an endless parade of conflicting emotions going on. The thought that predominates, though, is how very much I would like to become invisible. I want to hide from my doctors, hide from my employer, and most of all, hide from my da*ned sickness. That of course is quite impossible. I have an appointment tomorrow with my primary care doc so I can get a stupid note stating that I need better lighting at my workstation to ward off migraines. I'm at my wit's end with this mystery ailment causing the joint pain that is 10 on a scale of 10. It's nearly incomprehensible that anyone should have to hurt this bad without knowing why. I will get my answer in time, I know, but impatience is one of my greatest weaknesses. I can't seem to do much more right now than stare at my computer screen and cry. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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April 30, 2003 Fibrohugs post |
Experiencing a bit of relief . . . . . . I really felt like I was going off the deep end last night. I guess when the pain reaches 10 out of 10, no additional amount of stress is even tolerable. I just could not figure out what to do with myself to make it stop. The earliest I can arrange for a lip biopsy for Sjogren's is May 27. It's an awfully long wait until then, but at least I will know. To be honest, I'm sort of glad the ENT will be doing it instead of the rheumy. The ENT did my successful sinus surgery three years ago, so I already know I trust him. Went to the primary care doc today to get a note stating I needed proper lighting for my workstation. I was still in avoidance mode, so when she asked how I was, I said, "ok". She looked me in the eye, though, and said she could tell I was having trouble. She asked me on a scale of 1 to 10 how good I felt, and I sheepishly told her it wasn't any higher than a 2. I told her how much the joint pain had escalated, and she suggested I raise the dose of Armour thyroid I'm taking from the current half a grain to three-fourths. I'm still working my way up to a maintenance dose, so this should help. We discussed my work environment and what I required to do my job. I apologized for having to use up an appointment for getting a note, but she said she didn't mind. She told me that many fibro patients she knew who were having as hard a time as I am had decided they couldn't work at all and that at least I was trying. I really needed to hear that as I had indeed become very discouraged. Picked up my new prescription anti-imflammatory this afternoon. It's called Diclofenac, 75mg twice a day. Took one when I got to work, and after about an hour, about half of the joint stiffness I had been experiencing went away, making it much easier to walk around. So I guess I do have some sort of minor inflammation going on, even if it's not obvious on the outside. This is a change from the last time I took a prescription anti-inflammatory two years ago. At that time, I apparently had no inflammation because the med made no difference. The pain level came down a little bit too tonight, from a 10 down to about a 7. Whew. The biggest surprise tonight, though, was that the fluorescent lights have FINALLY been replaced over one of the workstations! So for once I didn't leave with a worse headache than when I started. I'm going to keep a copy of my doctor's note, though, in case this comes up again. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ |
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May 3, 2003 Fibrohugs post |
Passing up a possible dream job for health reasons . . . . My employer started layoffs last week while hubby and I were out of town. Even though Dan and I aren't in much danger of losing our jobs, we've been looking around just in case. Actually, Dan has. I didn't really have any ideas as to what I wanted to do next, so I've just been concentrating on sharpening my skills when time and energy allow. Then this week, Dan found an awesome job opening at a local aerospace firm for a graphic designer. It wasn't really his cup of tea because it requires a minimum of a bachelor's degree (he has an associates) and it would involve training co-workers, but it would be PERFECT for me! I was so excited when I read the description: creating materials for all types of media including web. It would be wonderful to be allowed to be creative! I almost went to write down the contact info when I realized something: I'm too sick to be working where I am now, so how could I apply for a job with more responsibility and longer hours? I won't have that biopsy until the end of the month, so I don't know yet if I have an ailment that could force me to stop working soon (as if the fibro, CMP and hypothyroidism weren't enough). It wouldn't be fair to myself or a potential employer to apply for anything until I know what exactly I'm dealing with healthwise. I'm so frustrated. The past workweek has been hell because it is very obvious that Dan and I are not wanted there, and my employer would be thrilled if we quit and saved them some money, but suddenly I'm too sick to make a career move. This realization is like being kicked in the gut. Only a month ago, I figured I would be feeling much better once I got the thyroid meds right and was not concerned about the fibro holding me back too much in a new job if I needed or wanted to find one. I was not prepared at all for this onslaught of non-fibro symptoms that have consumed me since the last week of March. I felt pretty mentally healthy up until that point and had no clue how close to the edge I really was. All it took was some extra illness added to the usual onslaught and voila! I'm a basketcase. I'm suddenly overwhelmed, not just for one day, like usual, but every day, and I can see no end to it anytime soon. I've never really seen my current job as anything exciting except monetarily. I've been told over and over that I am wasting my abilities there, but I was willing to put up with it until this week when I was made to feel so unwanted. Now my big chance comes to escape, and my body has betrayed me to the point where I may miss my chance. I am angry, not just at my body for betraying me again, but at myself. I did not put away any money for emergencies in case I got too sick to work. But then, who expects to be too sick to work when they're only in their thirties? This week, one of my doctors suggested that it may be time to look into "Plan B" as she called it, meaning considering part time work, working from home, temping or even going on temporary disability. I blew her off at the time, until I saw that job opening later on and realized I didn't even have the energy for an interview. I guess when I get the results of the biospy it really will be time to assess things . . . . I can't escape this pervading sense of wanting to hide, to climb under the covers and not even peek out until a cure has been found for what ails me. For the first time in five years, I am miserable. I am at the frayed end of my rope which turned out to be much shorter than I expected. I know the world will not end and that if I can just hang on for a few more weeks I will have some answers, but I seem to be losing my grip anyway. I can see the positives in my life but cannot seem to overcome the obstacles of the negative right now. This is a lot than just my job I am concerned about. I'm worried about my sanity. There, I said it . . . . |
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