| My Journal |
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06/24/03 I'm not sure exactly how to describe what I am feeling emotionally today. I finally fessed up and told my boyfriend about my memory loss problems. Not just Fibrofog, but serious short term memory loss. We had seen "The Recruit" last week. I couldn't remember anything about the movie besides it starred Pacino. When I asked him to tell me about it, he started talking, telling me about how Pacino was a recruiter for the CIA. OK so that part came back to me when he mentioned it. I asked him to please go into more detail... he did, but I still couldn't recall any of it. This really scared me. Is anyone else having problems like this? Besides the memory loss my vision has been pretty funky lately. The pain especially at night has been unbearable. I cannot just sit on the couch anymore. I have to lie down and put a pillow under my knees or my muscles just spasm over and over. Getting a good nights rest is a complete joke. Even with the muscle relaxers I'm still tossing and turning, cracking, popping. The pain is concentrated in my lower back, shoulders and knees. Then the migraine came back last night. I took some Excedrin Migraine and it did get rid of the headache. I just feel as if there is this hug gravitational force trying to compress my body. Friday we leave for a cross country flight to NJ. I am not looking forward to flying in those sardine cans they call planes. Last time I flew the flight attendant gave me a hard time about having Xanax and Vicoden in my purse and alcohol on my breath. I hate flying first of all so I had a Bloody Mary to ease my nerves. I had not taken any pills that day. Anyway she had worked me up into a frenzy (total anxiety attack) accusing me of being intoxicated and under the influence. Blah, Blah, Blah. To make a long story short I lost my temper with this super bitch and was literally escorted out of the Airport. So wish me luck!! I'll write again after my trip. 07/03/03 Well it was an uneventful trip to NY and back. No problems at the airport.. Thank God!! I did get to see my Doctor who orginally diagnosed my FM and he was able to refer me to a Dr. in California. I met with the Dr. today. He is a pain management specialist. He gave me some prescriptions and told me to follow up with a Rheumatic Specialist who is very well educated on Fibromyalgia. It's taken a year and a half to finally find a "Real" Doctor (One who understands FM). I am very excited about my visit with the new Doctor. In the meantime I will start taking the new meds, Voltaren & Zanaflex. Then meet with the new Dr. sometime next month. Word of advice... Don't sleep on the airplane.. I still feel the seat divider bar pushing on my shoulder. 07/23/03 Well I've finally recovered from my short trip to NY. I got sick after coming home was just a total mess. I have to stop taking the Voltaren due to internal bleeding. (How Lovely?) I don't think it was doing anything anyway. After all it is an anti-inflammatory and as we all know FMS is not about inflammation. As for the other meds Xanax and Zanaflex they seem to have been helping a bit and I have been sleeping. Unfortunately they don't last all night. I usually end up waking up about 5am tossing and turning. So I take my morning Xanax and head back to bed for a couple more hours. But I still feel like I could use more sleep when I wake up. Maybe another 8 hrs would help..(Ha Ha) I went to a new dentist a couple of weeks ago. You know how you have to fill out all those forms...like what meds you are on? What if any illnesses you have? So I filled in all my info. I get in with the dentist and she said "hmmm I see you wrote Fibromyalgia. Do you still have it?" So once again I informed another uniformed person that Fibromyalgia is something that you have for life. It does not go away. I visited my orthodontist a couple days later to have these jaw expanders put in behind my teeth. One of them needs to be tightened twice a week. I said yeah!!! more pain. But at least this pain will go away. They are only going to be there for 9 months. And the results will be worth it. A beautiful smile. (The braces were a gift to myself with my tax refund check) I had already told the accountant there about my Fibromyaglia. She said you are so brave for doing this and gave me a soft hug. I still don't know how I am going to eat anything for the next 9 months. But living with FMS helps you learn to deal with the pain. So this pain isn't really too bad, especially since I know what real pain is. I'll get by. 12/29/03 Well I finally saw they Rheumatic Specialist... Was not very happy with him and won't be going back. He knew virtually nothing except what he had read about. No real experience with the actual disease. I requested a handicap placard..still have one from NY State, but thought it would be a good idea to get a California one. He said no...that even at my worst I should be walking. Obviously he has no idea about how bad the pain really can be. I told him I only use it when absolutely necessary.. I guess he didn't believe me. He sent me to a Psychiatrist...state law here in California if you are on sleeping meds you need to see a Psychiatrist. I was not happy about going, but was very pleased to find out that it's not about therapy..strictly for medicine and making sure they are working correctly. He prescribed Lexapro...a wonder drug for anxiety and panic. The panic attacks disappeared completely but I still wasn't sleeping. I tried numerous meds for sleeping nothing has worked. Sonata put me to sleep but I would wake up a couple hours later. At least the panic attacks were gone. I will be seeing a new Rheumatic Specialist next week...he specializes in Fibromyalgia....wish me luck!! Also new symptoms... awful leg spasms..like Charlie Horses only worse if you can imagine. They would wake me out of a dead sleep and I would try to move to stop the pain..it only increased with each movement I made and seemed to travel up and down my body. Some good news...early this month my boyfriend of 2 1/2 years proposed. He proposed the same day I found out I was pregnant. I told him I had an early Christmas present for him, but I need him to give me a present first. He whipped an engagement ring out of his back pocket..proposed and I screamed I'm pregnant. We are both very excited. Of course I am very nervous about how the Fibromyalgia will affect me during the pregnancy. I will be keeping track of it in the journal. So now I am currently off all meds since finding out that I was pregnant. The initial problems were panic attacks after stopping the Lexapro. They have subsides somewhat. I also couldn't sleep at all after stopping the Sonata. I would lie down and it was like a switch went on and I was wide awake.. No matter how tired I was. Pregnancy hormones have kicked in and I am finally sleeping like a baby. If the Doctors could figure out which hormone it is that causes you to be tired and could market it as a sleeping pill nobody would ever be tired again... Maybe I should suggest that to my Doctor. I will be updating my journal after seeing the Rheumatologist and through out my pregnancy. Wish me Luck!! 02/16/04 Well...some bad news... I lost the baby and had to go for a D & C. that was about two weeks ago. This was my third miscarriage. I went into a major flare up since the surgery... I guess from stress and depression. I guess some things aren't meant to be. We will be trying again...at some point. Some good news... The new Rheumatlogist is a fabulous.... Thank You Dr K!!! Finally a Dr that actually knows about Fibromyalgia. He gave my the Dr's consent for a Handi-cap placard... Thank you Dr!!!! He put me in Oxycontin for the pain... It's been a week so far and the dopeyness is finally going away, but the pain is still there. Unfortunately I am back to not sleeping and my symptoms have increased 10 fold with this wonderful flare up. Back to the Dr next week when he will hopefully be adding a muscle relaxer and possibly changing my dosage. I will update again soon. 06/05/04 Wow, I can't believe it's been so long since I have wrote. The Oxycontin seemed to be working well, but I was still having muscle spasms. So the Dr put me on Flexeril. The muscle spasms lessened but all of a sudden I developed major hand pain. To the point where I could not hold anything. I even had problems doing simple things like helping my son on with his shoes. I read somewhere that Flexeril can cause muscle pain....and it did. I stopped the Flexeril and away went the hand pain and I once again regained full control and use of both hands. I remained on the Oxycontin and was up to 40mgs twice a day. Then I decided to have a drink with friends. I had skipped the morning pill and was not going to take the pill that night. No adverse effects while drinking. Then next morning I woke up crying and couldn't stop. I couldn't for the life of me figure out what was going on. It lasted an entire day and then I was ok. It was suggested to me by my Fiance that I was having withdrawals from the Oxycontin. I didn't think it could be. Then the next week I got a stomach virus. I still tried to take my pills, but they just came right back up from vomiting. I started getting the withdrawals again later that day. I called the Dr and he told me it looks like I was going to have a problem with the Oxycontin and to start weaning myself off of them. What he failed to tell me is that there is a duragesic patch I could have used while being sick.... Anyway...The withdrawal got really bad. I felt like I was losing my mind. I finally called the Dr again and he told me to completely stop the Oxycontin and he prescribed Vistaral to combat the withdrawals. It is also a muscle relaxer. It took about a full week until I started feeling like myself again. But here is my question. Doesn't everyone who stops Oxycontin go through withdrawals? So why did the Dr take me off it. It was working until the stomach bug. So I remained on the Vistaral for about 2 months. Then I stopped and only take it as needed. In April my Fiance and I got married in Las Vegas. When we got home I found out I was pregnant again. I miscarried again very early into it, probably due to stress. We bought a house in the Palm Springs Area in early May and just moved in last weekend. Talk about stress!!!!! Also I am late!!! Maybe pregnant again?? Wish me Luck!!!! 7/1/04 Well I was right... I am pregnant. 8 1/2 weeks right now. The Dr has put me on progesterone suppositories. My levels were very low which could account for my numerous miscarriages. I really hope everything goes smoothly this time. Most of my stressors are gone now. I have my mortgage and my house and am 99 percent moved in now, so the stress level has dropped considerably. Also my son is with his Dad for the summer, by the time he gets back I will be out of the danger zone (first trimester) So for now I get to sleep late and relax. My OBGYN put me on temporary disability until August 1st. So thats a good thing. I'll update soon. 9/25/04 Well thank God for the Progesterone. I am now 20 weeks pregnant and doing well. I just had an ultrasound and the baby looks great. My back has been very bad. I guess because of my body changes, mostly increased chest size. I can't blame it on weight gain because I have only gained 7 lbs. Though it's very possible the pain is from the FMS. My son is back so my stress level has once again gone up. Good news is after almost 6 years he finally pooped in the potty. Having a child with developmental delays is so hard.... I'm just happy that he is doing so well. He is actually being moved to a different school because he is functioning at a much higher level than the kids in his special ed class. I will update again soon. 1/7/05 35 1/2 weeks along now. I have only gained a total of 14 lbs but that Dr says everything looks just fine. We are having a girl! This pregnancy hasn't been too bad. Just recently as I have gotten pretty big, my back has really started acting up. I am ready for it all to be over. I cannot get comfortable at night and as soon as I feel I am tired enough to fall asleep I have to get up to pee. Next week is my last week of work since I have to drive over 100 miles each way. Not a good idea to work up until the end. I will try to give another update before the baby is born. I am hoping she'll be a little early. My due date is February 9th but I am sure she will be born in January. Wish me Luck!! 4/4/05 Towards the end of the pregnany I started getting some FMS symptoms...very strange ones. At night my whole upper body would tense up for about 15 to 20 minutes creating excruciating pain. It was so bad I couldn't breath because I was having pain in my diaphram area..then as quickly as it appeared it would pass...leaving residual pain though. This also happened after the baby was born for about a week. Well I was right.. Hayley was born January 27th via C-Section. At 37 weeks after telling the Dr I was sure the baby was sideways, they did an ultrasound. She was in complete breech position. After the Dr examined me he found that I was almost 3 centimeters dilated. I wanted to avoid a C-Section at all costs because I know it is considered major abdominal surgery and I was sure it would cause a flare up. The Dr decided that I would come in the following week to see if the baby had turned... I knew she hadn't. Then he scheduled me for an external cephalic version. This is where they try to manipulate the baby into the proper position by pushing on the stomach. I was then supposed to have labor induced as soon as she was in position. The Dr managed to move her into position but as soon as he let go of my stomach she moved right back to where she was. This happened twice after the second time her heartbeat dropped from 121 to 85 so I ended up having a "quicky" C-section. Hayley was born 10 minutes later. At nine weeks after having the baby I am in better shape than I thought I would be... I am very exhausted and my back is hurting but still no major symptoms have reappeared yet... Knock on wood!!! 07/31/05 Well I thought it would come to this. Less than three month after the baby was born all he** broke lose. My symptoms came back 10 fold if not more. I went spiraling down into a major flare up. Holding the baby has completely messed up my back. I went back to the Rheumatologist who told me I should hire someone to help with the Baby during the day. (I am not allowed to carry more than 5lbs. The baby is 17.8 lbs now) Ummm...who's gonna pay for that? I did not return to my job after my maternity leave. I have been in such bad shape I decided to file for Social Security Disability. In the meantime my Dr put me on State Disability. Obviously there is no way I cannot take care of my daughter. If I don't who will. So the Dr said the more I hold her the worse I will get. I am experiencing numbness on my right side. My arthritis in my hands has been excrusiating. I have been having spasms in my back and pain everywhere. I haven't been able to sleep, so the Dr prescribed Restoril which helped for the first two days and that was it. He also prescribed Neurontin for Pain. I am still waiting for a preauthorization to be done by the insurance company. 14 days now. Luckily I had a left over prescription of Vicoden I didn't have filled after the baby was born. I got that filled, but it makes me dopey more than helping with pain. It does help a bit though. My OBGYN put me on Vistaral right after the baby was born because I experienced the same upper body pain and tightening as I did right before she was born. It helped and I took it nightly to stop with spasms. The Rheumatologist recommended I go back on it 3 times a day to stop spasms before they start eliminating some of the pain I experience. I will update again when I start the Neurontin. Hopefully it will do something. I am a mess.. 09/02/07 Was turned down to SSDI after having a hearing. I will be appealing the decision. I had been put through the ringer. Gone to a Shrink again who put me on many different types of Anti-depressants. All of them made me anxious, nervous and I had no patience at all. I have come to the conclusion that I cannot take any SSRI's as they all make my condition worse. I recently tried Lyrica, which messed up my sleeping cycle even more. So I stoppped that. The Rheumy had me on all sorts of pain meds, I went from Ultram to Fentanyl. I was okay the first couple of weeks with the Fentanyl patches and then withdrawals started to set in before I was due for the next patch. My legs would start to shake and continue to do so until at least 3 hrs after I put on the next patch. I also had an allergic reaction to the glue from the patch. Dr then put me on Darvocet, which did absolutely nothing for the pain. Finally I requested Lortab. He said it may cause constipation. I said I should be so lucky! I have had nothing but loose bowel movements for years now. Unforunately there is no constipation. The Lortab on mildy helps with the pain. I have no choice to get up in the morning. I have to get the kids off to school. Hubby has taken over cooking and most of the housework. I feel completely useless. When I do try to help him I end up in more pain. Even a short trip to the store puts me in more pain. Probably because in those short trips I have to lift my daughter into the carseat, Lift her out. Lift her and put her in the shopping cart. I feel like my spine is going to crumble most days. 10/11/07 Still on Lortab and it barely seems to do anything. Pain levels are super high, stress levels are through the roof. My lawyer is working on my SSDI appeal and I will not be able to relax until it is sent off to the appeals council. At least my Rheumy finally wrote up a report to go with my X-rays that were done in 2003!! Which prove that I also have scoliosis but was for some reason never included in my records to SSDI. The X-ray can be viewed here: My screwed up spine 10/30/07 My Lawyer finished up my appeal and submitted it to SSDI appeals council. Wish me luck!!! I recently went through a period of hair loss. Everytime I would run my fingers through my hair I would end up with like 20 hairs in my hand.... and I mean every time!! Luckily that has subsided and my hair seems to be coming back. My hair went from very wavy to straight. I do feel this was stress related. At first I thought it was the meds because I had just started the Lortab a few weeks earlier. But since the hairloss has stopped and I am still on the Lortab it had to have been stress related. I have definitely been under a LOT of stress lately with the SSDI denial and then dealings with my ex-husband, who I have had to take to court for back Child Support owed and to stop visitation of our son, due to the fact that his live in girlfriend is a nut job. This issue has been dragging on since February!! When we were supposed to have our hearing in September his lawyer got a continuance until Nov 19th. So needless to say my stress levels are way more than normal. 10/12/08 I would have updated sooner, but this site has been down for about 6 months now. I am still fighting for my SSDI appeal. A local congress person is supposed to be speeding up my claim. Hmm, my hearing was in June 2007, it is now Oct 2008, so much for speed!! I did win my case against my ex-husband, but I have to return to court this week to have come spelling errors corrected on the order. So then I can register the order against my Ex-husband's girlfriend in NY. The Lortab has been switched to Norco, which seems to have less effect on my stomach and less hair loss. My hair got so thin I cut it short. It's finally starting to get wavy again, but still thin. : ( Been seeing a Neurologist who has promised me that we would find some answers. My Rheumatologist felt that my neurological symptoms which have been on a rapid increase, may also be caused by MS!! The Neurologist did a Brain MRI which showed a healthy brain, then he did a Cervical Spine MRI and this showed a bulging disk. Ah more proof for the idiots at SSDI that I am in REAL pain!! But it still does not explain the symptoms. I will be sitting and then get up and walk. After about 10 steps my legs will literally fall asleep and I cannot move until they wake up which consists of a period of pins and needles and then I can finally move again. A few months ago this started with my arms too. I would wake up in excruciating pain in my arms and realize that they were numb. The Neurologist wants to send me back for more testing. The next test is a Visual and Auditory Evoked Response test, not actually sure what the test will tell, but I know it's something about firing of the nerves. Unfortunately, this is not a test I can afford right now. My vision has been bothering me for some time now. I have always been bothered by florescent lights. My Neurologist also had me get my eyes checked. My vision in my left eye is shot!!! As of Monday I will be wearing glasses full time. I went from 20/10 vision which is better than perfect to god knows what now. I did not see my prescription, but will have it once I get my glasses so I can compare it to my last prescription that is about 7 yrs old, and was only for driving, reading and TV when my eyes felt tired. All I know is I could not even read the top line of the eye chart with my left eye. My right eye, I was able to read to the 4th line. I will update again soon...if this site is still up. 10/20/2008 Quick update... My vision in my left eye went from 20/10 to 20/50... MAJOR change and the right eye went from 20/10 to 20/20. Both eyes have astigmatisms. My Neurologist is urging the other tests, especially since my vision test showed significant change, which would be a sign of a nerve problem. These tests would show proof of this. My Neurologist himself arranged for me to have these test done at less than half the price I was quoted. He feels they are very important. Since he has been 100percent dead on with his hunches, I am going to go for it.       |
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