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MONDAY Hello all, I hope this finds you well. Again I have not been good at updating my website. So much has happened in my life the past few months the biggest being we moved to Beatrice, NE to be closer to my sister so she can help me and I can help her with her daycare on somedays. My girls did not adjust to the schools very well though so I decided to again homeschool them and I hope we do well. Health wise I just joined the YMCA so I hope to excercise and gain some muscle strength back. I am having so much pain and numbness in my feet the most and I have found out though that my move here has helped my pain level and I do believe it has to do with the amount of stress I was dealing with in Lincoln. I still have my days where I am down but I have come to notice it is when I am having a stressful day. I have just come to the best understanding that I can and that is that I just can't do what I used to do so I just have to make the most out of the good days and accept the bad as they come. I need to excercise and build up my strength I have lost and I am hoping that helps. I want to get off my pain medication so bad, I feel as though I am now a drug addict because I have to take pills just to make it through a normal day, yet the pills give me back my life to a point. You just see so much stuff on T.V. and then I have family members who say if you just do this or that it will be okay. I really would love for them to live one bad day in my shoes and see how it is. Or when my feet are numb and I walk like I am drunk to not say oh it is just her pills because it isn't. I think I just should not have even let anyone know I take medicine because everything I experience now is because of my meds. I really am alone in all this except for my children. Without them I would have nothing that is for sure, well I take that back I have GOD and my children and really with a close Wal Mart that is all I need. I just wished I had more family support is all. Okay I better get this posted and go off to bed. I hope this finds you well and thanks for everyone's support. SUNDAY I hope this finds you well, happy and blessed. Nothing too exciting in my life these days, just trying to enjoy summer and keep cool. My girls are getting so tanned and beautiful swimming almost everyday. They are such happy beautiful little women. God truly blessed me with them. I found out some bad news this week, my ex sister in law was diagnosed with breast cancer. She tries to be so strong but she has to be scared. She is such a beautiful woman. This hits close to home for me because my mother died of breast cancer almost 8 years ago. I worry for my girls too because they now have breast cancer on both sides of their families. My sister in law was getting regular mamograms and skipped a year and then they found a few lumps, so she went into the hospital to have a biopsy and it came back cancer. What I would like to say is please please ladies get your mamograms and do them regularly. My mother skipped a year too and same thing fro her except hers was far more advanced. I sure made my appointment because I too have skipped a year and with all the Fibro stuff and getting through that I had not even done my yearly pelvic exam in over 3 years. I also did something that I have been wanting to do for years and I got checked for all STDs and had an AIDS test done. I have only been with 3 men in my entire 38 years but my ex husband cheated on me so many times with such nasty women in my opinion that I just knew it was time I did it. Boy is that scary. Ya know in your mind you think, oh I know I can't possibly have this but then there is that chance. I risked my life taking my husband back after each affair and now it was my time to make sure because he put me at risk. The waiting for the test to come back is hard but thank GOD I am negative. I was so scared to take the test before because I thought there is NO WAY God would punish me just because I loved the wrong man for so long, but the sad fact is there was a chance it could have been positive just for loving him more than myself. There is no love that is worth putting your life in their hands to ruin in an instant of bad choices. So I guess in all this my point is take care of yourself and get your yearly exams and love yourself enough to do them. I just got so tired of doctors visits in the last few years I neglected other things that could be going on with my body. I just want to be healthy and made a pledge to myself to never neglect those areas again. I owe it to myself and my children to be healthy. Early detection of any disease or condition helps in the healing process and makes the difference sometimes between life and death. One other thing I am so ticked off about this week is my daughter who is 20 has been diagnosed with Endometriosis and Poly cystic Ovarian Syndrome for the last 4 years. She was told at 15 she probably woudl not have children, but God stepped in and gave us a beautiful little girl. Now she is getting treatment for this from a female doctor she found through and emergency room visit. She has had surgery to remove some of it, but it has come back and has webbed itself onto her kidneys, bladder and other organs. So this new doctor of hers is treating her with a shot called Lupron, it is supposed to put you into a menopausal state and that in turn slows down and in some cases cuts out the endo completely. Okay one reason I am ticked off here is my daughter was not fully informed of all the side affects of this shot, another is she is now being labeled a narcotics abuser because in the last three months she has had 65 Lortabs prescribed for her. OH MY GOD IS THIS DOCTOR NUTS??? That comes out to one pill every other day. I have seen this child go from an active teenager and mother to someone who is in so much pain she goes days in bed. What is wrong with a doctor who allows their patient to be in pain. I went with her to her last doctors appt and the doctor basically said this Lupron shot would take away any pain and she should not be feeling anymore. ON their own website it says there will still be pain. She is making Erica think this pain is all in her head and she is just wanting pills. first of all Erica has never asked for medication for the pain, she was given it and she only took it at night just so she could get some sleep. How can someone tell another they are NOT feeling pain. I started my own research on both ailments and found out how really painful it is document after document. This doctor is making her feel so bad about using pain meds for "cramps" as she calls them. So much so Erica went to the emergency room just last night because she was suffering yet another side affect from the shot, her third so far, and was given 10 pain pills. This child would not get them filled because she did not want her doctor to get mad at her. So she spent the weekend balled up in pain because this must be in her head because the doctor said so. There is all this hype going on right now about pain medications and people abusing them blah blah that people who truly are in pain either aren't getting the medications they need or are afraid to even ask because of this very reason of being labeled a drug abuser. Yes there are people who abuse pills as well as other drugs, but why does that have to affect those of us who need them? I just want to scream at this lady. If only she knew what I took daily she would sh.. her pants but of course I did not say anything because then she would use that as our whole family are pill poppers. All I know is yes I know my body is now dependant on pain medicaiton, but I am no addict. If it were not for them my life would be reduced to being in bed. They give me a chance to take back a small portion of my life. I did feel bad at first when I had to rely on a medication simply to get out of bed in the mornings and have a life. I am truly lucky to have these meds, and it took me a long time too, to put my faith in my doctor and take them because of all the stuff I have heard about them. Now my daughter has to suffer for nothing when there are medications out there to help her. She should NOT have to beg for that or be made to feel like her pain is in her "head" simply because a doctor says so. Please if anyone of you has dealt with either of these or knows someone please email me so I can pass it on to her. She is so depressed right now simply because a doctor who is supposed to be helping her is telling her this is in her head and she just wants pills for "cramps". Everything I have read says different and even this ladies own partner on call the other night when erica went to the emergency room said she has patients with Endometreosis that have a monthly supply of pain meds because of how painful it is. At this point it is not about the medication for her because she has been so humiliated by this woman for saying this is all in her head and for informing the pharmacy and her primary doctor about her "abuse" that I don't think she will ever take another pill for the pain. I just want her to get some support system like we all have. In my opinion no one has the right to tell another what they are feeling is not real. A woman knows her own body and I think women especially have a very high tolerance to pain and if it is that intense then she has the right to be pain free. This doctor gives her 5 to 10 pills at a time just so she can "monitor" her abuse so it does not get out of hand and has now simply refused to give her anything and has set up an appt for her to come in and talk about her "problem" with pain meds. Just like Fibro in some doctors minds is "all in your head" I guess so is having webbing squeeze and pull at your organs and cysts that swell and burst is too. Okay I will shut up since I am probably not making much sense since I am so angry because I did my own research and found out how awful this is for some women. AGain please if anyone out there has any info or a website that is informative about Endometreosis or Polycystic Ovarian Syndrome is please email me at jdh_1166@hotmail.com Back to Top FRIDAY Wow, here it is now almost Fathers Day. I am so awful about coming on here and updating, anymore it just kills me to sit for too long. My life is back to as normal as it can be with NO men which cuts down the stress therefore not as many flares. I am finally getting to the point where I am not as depressed about what I can't do anymore and just do what I can with many breaks but I get it done. My girls are awesome and so understanding that I feel I am so very blessed. I am finally on a medicine regimin that works pretty well for me. At my last check up my doctor and I talked about how tired I am with taking pain meds, it is such a hassle first of all taking meds to begin with was hard for me but it is such a pain sometimes fighting with insurance because mine will only let me fill them a week ahead of time which is fine but sometimes they won't and if I have something planned I have to rearrange it according to when I get my meds filled. Then if my doctor changes my meds then I get questioned and on and on. I just hate the hype about people addicted to pain meds and then the people who really do need them sometimes don't get them. I am so glad that my doctor is very aware of my needs and is not afraid to prescribe what the two of us together have found that works. So finally I am pretty steady with what works and that is Avinza which is a slow release Morphine. I had problems with it in the past with making me itch so very bad but it worked, now I take it with Benadryl and that helps. Made me real drowsy at first, but the Oxycontin was awful and did not work at all for me. Then I take Percocet as needed which is every four hours but it helps. Then I take Klonipan for my leg twitching which without it I simply cannot sleep. Anyways I got off track, we did talk about me going to a pain clinic and we have one here in Lincoln but my doctor says there are more for giving you more meds but there is one in Omaha that helps you deal with the pain management mentally and with excercises. The only draw back is it is 50 miles away and you have to either stay there for around 30 days he was not sure, or drive there everyday which I know I can't do. But eventually I truly hope to cut down on my meds and learn different ways to deal with my never ending pain. I for now just have to accept what I am taking and figure out how to possibly go to the pain clinic. I know I cannot go there and stay for 30 days because I could not just leave my girls for that long, but then in the long run I guess that is only a short amount of time if it means a better way to deal with my pain. I don't know yet. Okay well I am going to get off here and I truly hope to update more often I just do not want to come on here and complain about the same crap day after day. Thanks for everyone's support and I have visited so many of YOUR websites that all of us together offer so much support and different ways to cope with the same but yet different disease. Hope all is well with you and please email me if you just need someone to talk to or support you. Bye for now. THURSDAY Hello, I wish you all a Great Mother's Day. I plan to just take it easy and watch some movies with my girls. My body is hating me right now so to do anything else just is not gonna happen. I wanted to go buy a book called "He's Just Not That In To You" but I don't even have the energy to do that. I need all the help I can get in the man department that is for sure. I have been with 3 men in my 38 years and my ex time after time lead me to believe He loved me over and over again and dumbass me believed it. I think the stress in my life does not help me at all with my pain levels and if I could just get all the craziness under control I am hoping that would help some. What I had forgotten to mention in my last post was that when my ex came back he had let one of his friends move in here too without asking me of course. Well I thought the guy was pretty nice after getting to know him so I let him stay. When I asked my ex to leave I told this guy he could stay unti he found a place. Well we started to talk and one thing lead to another and we started "dating". He slept in another room but we had become a "couple". He treated me so great in ways I had never been treated. He would run my bath, rub my body when it hurt so bad, bring me my dinner after cooking it and everything and it was SOOO very nice. I fell in love and everyone in my family liked him because they could see how good he was to me and how after so long I deserved it. My girls were pretty jealous and so was my ex but it was going good. Well like everything else in my life it all turned to hell in an instant. Just yesterday he leaves to go to work, oh and he was giving me 3/4 of his paycheck which even my ex never did, but anyway it got to be 2 in the morning and I thought I would call the cell phone I let him use only to have someone I don't even know answer it and he tells me it is his phone that he had bought it from my so called Mr Right. I was like what the heck is going on here, well I start thinking what else is gone because my ex had done some of the same crap when he left, he would take stuff he thought he was entitled to blah blah. Well this guy stole my brand new video camera I had just bought a month ago, my girls DVD player they just got, my medicine of course I just got refilled and about 10 DVDs. Talk about getting hit right in the face with a big rock. So I start crying wondering why me AGAIN and I call the police. Of course Lincoln police let me tell you are so damn useless, he proceeds to tell me that since this guy "lived" here he didn't think I could do anything. Of course that is my luck in life, people can just do whatever they want to me and I can do nothing. Well Mr Right finally calls me to tell me he screwed up and he forgot to tell me he once had a problem with crack and about a week ago he started smoking it again. I just could not believe it, I started puking my guts out and just falling apart because never in my life would I EVER be involved with someone who did drugs and then on top of that I let this person be around my girls. Had I met him any other way he never would have lived in my home but he was here because of my ex and so it ended up that way in a sense. This would have to be the worst week of my life, my Grandma dies and then this. Well the good news is I was able to press charges after all even though that will probably end up being useless because it won't bring my stuff back but might get some justice to my girls. I just hope I will get some of their respect back because over and over again I bring crap into their lives and they see how weak I am. I am just putting it all into God's hands and have to believe everything happens for a reason and just forget about ever having a man in my life again. I could never trust anyone. All I want is to grow old with someone who comforts me when I am sick and who loves me because I am a great person but it just seems I have "dumb" written on my forehead and I attract these loosers for some reason. The thing is I don't go out looking for it, it always comes to me. Okay I will shut up, this is not a great day for me emotionally or physically so I am just going to go lay down and enjoy some peace and hope my body gives me a little break. LOL. Back to Top MONDAY Okay well here I go again not doing my part on keeping this dang thing updated. It comes a time when life sucks and to write about it makes it seem worse, but here goes. My ex that I thought was finally going to do the right thing actually a few days after my last post left me for another woman, much older and much uglier or so my ego would like to think. So I caught him in lie one million and one and said that was it and told him to go. I pat myself on the back though that I did not let this go very far this time and the shock value on his face for me sticking up for myself was priceless. My only regret is my girls, they want their dad in their lives yet they begged me not to let him come home and I did. Now he is back to ignoring them and acting as though he has no children while taking care of this new "whoever's" children. That sucks more for my ego than my heart because I learned a long time ago with him the heart holds back for a long time. Of course my body turns it's ugly head on me at the same time and I have had one flare after another. I have lost feeling in my arm once again and I am loosing feeling in my feet. My meds help me with the pain to take the edge off but even they are a burden because I either get questioned when I get them filled or I have people lurking around waiting to steal them and that hurts. IT hurts that someone wants to take from you and leave you in pain for those hours that you have nothing. So I resolve to taking my purse with me everywhere even in my own home and that is not the way it should be. Your home is supposed to be where you can leave anything and it will be there when you come back. I almost want to say to hell with them and suffer but I can't. So good news I don't have emotionally, physically or spiritually right now but that is the way the world is. My body just follows along and takes me for a ride I am not prepared for even after two years. I will write soon I promise and until then please email me if you need anything because helping someone else always helps me. Lots of love to you. FRIDAY Okay well I have not done so well on keeping up my diary that is for sure. LOL I just don't want to write the same things over and over again as not much really changes. I sit here it is 1 am and I am tired as hell but can't sleep because of these dang leg twitches that bug the heck out of me. I am going in for a sleep study the end of February though, I think on top of everything I may have Narcalepsy. I will just be sitting there and fall asleep, no warning and I have bruises on my poor face to prove it. My poor family, my little girls Ash 12 and Haylie 10 think they have to babysit me and I feel so bad. They are putting a pillow in front of me because usually when I go I am sitting up and fall straight forward into the coffee table or my desk. Then the next day I will have an indent in my forehead, a black eye or one really nice day my daughter brought me a piece of cake and I fell right into it. When she woke me up I just bawled and told her as funny as it was in a frosting on my face way, it was humiliating that I fell right into it and did not even realize it. It does not happen everyday and I wake right up when someone yells at me but I just fall asleep out of no where, except of course when I am tired and supposed to be sleeping I can't. I am too young and my girls are too young to be taking care of their mother. So here I go for yet another test looking for some answers for this body of mine that keeps betraying me. Why can't they just hook you up to a machine like a car and you get checked from head to toe and get exact answers on the spot and they get fixed? But no you play the guessing game, am I crazy? am I really this bad off? I know what I am feeling but nothing shows up!! My bad days can't even be bad anymore because I have to put on my happy face because NO one wants to hear it. People have actually stopped asking how I am and if they dare ask I say just fine even though it hurts to even walk 10 feet to get a drink of water. My beautiful girls, bless their little hearts, worry so much and take such good care of me with a big hug or rubbing my back or whatever. Then there are those times they just want to cuddle up next to me or lay on me and I have to push them away because it hurts too bad. :( I just want to scream I WANT THE OLD JOANNIE BACK!! She wasn't so bad. LOL Okay on another note, my ex has moved back home and things are going pretty darn good I must say. He is snoring as I type. He has been battling a kidney stone since November and finally 2 weeks ago since it had not come out on its own they went in and took it out. Okay well I have had a kidney stone too, mine was the size of a quarter I guess, and it was worse than labor. So it is kind of funny watching a man experience some of the intensity. LOL What is so incredibly funny though and I am NOT being mean here, is when the doctor came out to talk to us after it was over in this little cup was teh stone. So we were all passing it around looking really really hard to see it and I am not kidding you it was literally the size of a piece of sand. You could barely see it, and that little bitty piece was blocking up everything and hurting him sooo bad poor baby. He is fine now and goes back in this week to see what kind of stone he is producing and to get the stent out. We are just falling apart the two of us so I guess we better just stick together. Okay I am tired and I better get to bed now before I get another burst of whatever. Talk to ya soon and hope you all have a blessed and warm week. Back To Top HAPPY NEW YEAR!! Woo Hoo. I am finally back and besides having no energy I am doing well. I have had to take time off for myself and that is pretty hard for me to do believe it or not. I have had to regroup and realize what is important in my life and what better day to say it to the world than today!! My new years resolutions are: to find new ways to relax and over come my pain, to be honest with myself and others and quit pushing myself to do the things I cannot do, and to put my family first and quit worrying about everyone else and what they think. ONE more big one is I am going to promise to keep my website up no matter what because of all the emails I have been getting I know I am helping others as well as them helping me. We are forming a support system of people who understand each other, not only with our illness but with other issues as well and I am going to be very honest because there is no other way I want to go. Thanks for all your support. My illness has changed my life this last year especially. I have been on one medication after another and most do not work or they work for a few short weeks and then don't. I feel like I am a guinea pig sometimes. I do thank my doctor's office and their nurses because I know I am a pain at times. Right now I am on the Oxycontin, Percocet and the Cymbalta. The Oxycontin I really do not think works that great for me but without it the Percocet does not work very well either. I hate being on all the pain meds with all the crap in the media but I know I need them to be even part of who I used to be, well let me rephrase that, I need them to do even part of what I used to do. My life seems to revolve around 4 hour blocks because that is when I can take my medicine. I hate that but if I don't the pain builds up and then nothing works. The Cymbalta was marketed to help with depression as well as there was studies done that it works for pain, well NOT for me. I really think this med is a waste of time for me and expense, but I keep taking it. I was so excited when it came out because I thought I would be able to be down to one med once a day finally but it has been about 6 months and I have noticed no difference. I have asked my doctor to stop giving me so many meds I just don't want to do it to yet another one. Maybe it is working and my pain would be worse who knows. I have children to take care of so I do what I need to do and go on there is nothing else I can do. This illness chose me, I did NOT choose it. I do know however I am in for the fight of my life because it is not going to cripple me again like it did my hand just a few short months ago. That was the scariest thing I have ever delt with and I had absolutely NO control over it happening nor with the feeling coming back and that is hard to accept when you are as stubborn as I am. I am used to being able to control my life and to make things work. My life is good and I wake up each day with a smile on my face and I am ready to do whatever I have to do. My ex husband and I are getting back together and although I am stressed about that I am happy too. I need him to be there for me, a few weeks ago my legs hurt so bad and they were stubbly since I had not shaved for a few days and he just came up to me and he rubbed my legs for over a half an hour. He wanted to make me feel better and I have never had that from him and it really did feel so good. Not sexually, although I have missed that part, but emotionally it felt so good to be loved in such a simple way. We have had such a rocky relationship with both of us being stubborn and wanting our own ways. Now we are talking and we are saying if we do this again there is just no giving up and walking away. Ending it will not be in our vocabulary like it was so easy to be before. I guess that is why so many people get divorced because marriage is disposable, if it doesn't work exactly the way you want it to then so be it you move one. The thing is those same problems follow you so they next relationship goes the same way just with a different man with different bad habits. He knows me inside and out, I don't have to change because he loves me for all my faults and even with my illness. He has grown up finally and realized he was loved by me and our daughters and he never found that with other women. They replaced him the minute he walked out and I never did. Yes that may make me stupid in some ways but I was happy by myself and I was not ready for another relationship. I still loved him and who knows I may be making yet another mistake like my friends and family are quick to point out but I could get hurt by someone new just as well as him and I already know I love him. I guess this is a new year so I am ready to start a new relationship with him. If it works then the girls and I win if it doesn't then once again I let him come back into our lives and me I would deserve it but my girls would not so I just pray for the best and there is a reason God keeps bringing us back together so since I have seen these huge huge changes in him I am willing to take the risk. We have both agreed we need to make God the biggest part of our lives and everything else will follow. Okay well I hope everyone who comes here for support or just to read that someone else out there has the same issues or bigger (LOL) finds some peace with what I have to offer. Let's make this a good year and pray for a miracle cure that was there all along. I am up to trying anything so if you have something that works for you let me know. I would love to be drug free like I was before, even though these meds are helping me make it through I would love to have one day of no pain and do it without prescriptions. Lots of love to you and HAPPY NEW YEAR!! Back To Top WEDNESDAY Well I am back and Thanks Be To God I have gotten pretty much all my feeling back in my hand. It is still a little numb but I can move all my fingers and my wrist. That was the scariest feeling I have ever had in my life and not knowing what caused it still to this day or if it was going to be permanent was awful. It was so weird to have your brain tell your hand to move and to see it shake so hard because it wanted to but would not. I did however find ways to work with it and I could drive I just had to flop my hand up on the wheel and I just used my elbow to push or pull. What sucked was I have a stick shift but I did it. You just never know how much you use both your hands until one is gone. I thank God it was not my right hand because I would have been totally lost. I am going in for a nerve conduction test on Friday, Dec 3rd, to see if it was carpal tunnel and I just did not have the usual symtoms mine just came on all at once. I do want to know at least what it could be and how to prevent it from happening again. On a personal note things are going pretty well. I am falling in love with my ex husband all over again and it is as exciting as it is scary. He has changed so very much and he cares about me in ways he never has before. For once I feel safe and loved. The girls are so happy too and they are having so much fun having a dad who is paying attention to them. I just hope he is not just doing this because he is in jail for his child support and when he gets out the old Joe comes back and we get hurt. I do have to say he has never been the way he is before in all our times we have tried to reconcile in the past. I just put it in God's hands and we shall see. I have loved him for 23 years and I think I always will regardless of whether we are together or not. He says he feels the same and he has no idea why he was always looking for what he already had. Maybe us getting old is making us see things differently. Anyway all seems well now personally and with my hand. I never give up hope in all this. I just keep reading on and try different things. I still have such painful days where I just want to give up but I have learned how to rearrange my days so I do things at the times when I have less pain or am not so tired which is very few minutes in the day. I have learned to be a very good actress and most people think I am getting better when in all reality it is the same or worse. I love my life and there is a reason all things happen, I thought at first God let this happen to me to slow me down. For me that is pretty hard but my life has pretty much come to a standstill as it is. I just force myself to go on and believe it will get better. I will close for now and see you all hopefully within the next week in my update. Thanks for all your prayers and emails they have meant so much to me. Have a blessed week and take care. THURSDAY Hello!! Well I said I would update better well my last post I told you I had a weird thing going on with my hand. On Tuesday, the 26th, I woke up and went into the bathroom and I could not use my left hand. I thought it was asleep, turns out I am paralyzed from the wrist down. I am numb but can feel a little bit. Almost 3 weeks later and no change. I had an MRI on Friday I believe and they did find some bad discs and a littl degeneration but nothing yo really explain the paralysis, no pinched nerves anyway which is what one of the things it could have been. So now I wait to get into the nuerologist and they can't get me in until Nov 29th which sucks cause this scares the hell out of me. I want to know NOW what is wrong and whether it is permanent or fixable. Nonetheless I went from typing 70 words per minute to pecking probably 10 now. I have been feeling sorry for myself which I have not done for a long while. I feel like my whole body is failing me and there is nothing I can do. I feel helpless really. Thank God it was not my right hand and I can grip things in my palm, I just can't straighten out my wrist or move my fingers up. Apparently it is nothing too major since my Doctor thinks I will be fine going over a month before I go to a nuerologist. I Just hate waiting. You do not realize how much you use two hands for things until you can't. I have had to find a new way to tie my shoes, I can't curl my hair very well and of course my car is a stick shift but I have learned to flop my hand on the steering wheel and hold on while I shift with the other hand. So if anyone out there has had this happen to them please write me and tell me what it was please please. Okay well I am going now and will update as soon as I know what caused this. Have a blessed day. TUESDAY Hello everybody. I am so so so sorry I have not updated for such a long time. I have been so up and down with how I feel I am either off my feet for a week and then so backed up with what i have to do that I take the next week to get things done, then of course I over due it and on and on. I used to tell my doctor I was depressed in the sad I am this way depressed and I have no control, now I think I am depressed in the I just can't get ahead way. I keep being positive and I put on my happy I am feeling good face for everyone else but man I wished I could just wake up from this bad dream and be myself again. I am on the new drug Cymbalta and I see absolutely no affects what soever but my doctor says to give it a while longer. I asked to be taken off the Oxycontin because I am just so tired of taking so many pills, but I could only manage the pain for 3 weeks with just the Percocet before I asked to be put back on. I felt pretty defeated. It is just frustrating dang it. I went on a new drug and I keep forgetting what it is called and right now I am too lazy to go downstairs to check,okay I checked and it is called Klonopin, but anyway I kept falling asleep out of no where and hitting my body on everything. IT was supposed to help me sleep and help with my leg twitches. I had so many bruises on my face everyone thought I was beat up. I would fall asleep and fall forward onto my coffee table or at my desk and hit the corner and busted open my lip. What really topped it for me was I was sitting on my couch and next thing I know my daughter is waking me up, I had fallen forward onto a cupcake and had cupcake and frosting all over my face and I did not even know it. If it was not making me feel so helpless it would have been comical but it wasn't. I told my daughter to please not tell anyone about it. So I call my doctor and he tells me to try to not take this new med and see if that helps and of course it didn't. There are just no easy answers for me. Today I wake up with a whole new ailment, my left hand is numb. No feeling in my first finger and thumb. It is not the falling asleep kind of feeling, I have strength and I can move it fine but there is no feeling it is just numb. I can pinch it and bite it and feel nothing pretty wierd. My daughter called her mother in law and that is just how her MS started. Why me? Why not me? I just don't get it somedays. One good thing that has happened in the last month or so I hope is my ex and I have come to a whole new way of appreciating each other and really really listening to each other. Well in the process of talking we fell in love again and it seems so much different than ever before. I don't know what it is and just maybe I am seeing something that is not there like I always have with him but I need someone to take care of me emotionally because I am drained and he is giving me what he never has before and I guess if it ends again then at least for a while I had someone take on some of my pressure and stress away. I told him today to just leave me because I don't know where this is going, I may end up in a wheel chair someday and then he will be trapped. He said I am stuck with him this time and there won't be a wheel chair because he will be carrying me. Well the thought was good but he would never be carrying me. IT did make me feel special though and I needed that because I have been crying all week with the bruises, falling asleep and now this crap with my hand. I don't know I guess I am vulnerable right now with everything and I still have a smile on my face and I still go on each day. I am an optomist really and I know everything happens for a reason it is just hard figuring out the reason sometimes. I just hope we work out for our girls who see a whole new dad and me because I am tired of going through this alone and only having children to talk to. I think when you come down with an illness no matter what it is, the people in your life just start acting as though you don't exist. I have spent my whole life being there for everyone trying to help out however I could. I have never had money but I have offered myself without question. Now I get the occassional phone call saying how are you but they really don't want to know cause you loose them after about the first 3 sentences. I have never gotten the hey I know you need help so can I come help you with the kids or maybe clean your house once a month. I thought I had so many people in my life but when it comes to needing someone no one is there. My ex who I have slammed for years and so has everyone else, when I have needed him to help me move from one house to another or just needed a friend to talk to even though he has been with someone else he has been there and he is here now. So maybe I really need to adjust my way of thinking. I have people in my life when I am healthy and I can do things for them, but the minute I start saying no I don't feel so good or sticking up for myself and saying no I can't do that today because I need to take care of me well that is when everyone becomes invisible. Why is that? Okay enough of that! I will get back to my weekly posting I promise and please continue with your emails because they help me as much as I hope I am helping you. Have a great week. Back To Top FRIDAY Hello all sorry I have not posted recently things have been pretty hectic around here at my house. I have been getting homeschool stuff together and getting it done at a slower pace than I have previously. We have settled into a pretty good routine though and I hope this year they learn lots since it is all based on my teaching skills. I did this once before for a short time and they excelled and even got ahead of their peers when they returned back to public schools, but that was when they were in 2nd and 3rd grade so it was much easier. I have to just put my faith in God and believe he will show me and them the wisdom to get through. I am having a pretty bad flare up the last few days. My legs are hurting so bad I can barely walk. I am sure it is probably because yet again I did too much this past weekend. I don't know. Some days I just want to give up but I can't. This pain my pain meds is not even touching and that sucks. I have been on a new med called Cymbalta and it is supposed to help with pain relief as well as depression. So far I do not see any difference and still have to take my pain meds to get some relief. I keep thinking every time I have a flare it can't get any worse and then I am proved wrong once again. It is mostly my arms and legs and this time my legs are hurting really bad. I wished I had the money to buy myself a hot tub, I think that would feel so good on days like today. I am literally walking slow and hunched over because it hurts so bad today. I am on my period as of yesterday and I am going to start keeping track of these really bad flares to see if my period has something to do with it. NEVER in my whole menstruating life have I had cramps that hurt but this time oh my gosh they are killing me, plus I am more tired than usual, bleeding more heavily and can't eat. I really do believe last month around my time of the month I too had a really bad flare. Don't think it is every time but I do think it is worth documenting just to see. It is this throbbing, shooting pain that just makes me wish they could just cut my legs off from my body. Today is the one day since being diagnosed that I have wished for a wheelchair. That is a picture I hope to never see again. This is NOT going to rule my life anymore than it has already. On a good note I am still loosing weight and that can only help I hope in the long run. Please pray for my 19 year old daughter. She was diagnosed with Poly Cystic Ovarian Syndrome when she was 16, it is a miracle that she even got pregnant with my granddaughter with that and she has a tilted uterus. Well she is going in for surgery on Wednesday and may have to have a hysterectomy if they can't get all the cysts. I told her that she has already been blessed with a beautiful little girl and God will get her through if it turns out she has to have a hysterectomy. I know that may have not been the best advice because I don't even know what emotions you would go through facing that. I am just trying to be upbeat for her and I know at her age it is almost unheard of to have that done and I just pray they get everything. So I will end here and go get my naughty little grandbaby to bed. P.S. I am moving so slow with this darn flare that is it now Thursday and my daughter had her surgery and everything went fine, all the cysts were removed and everything else got to stay. They did it laproscopically so she came out with two little incisions and got to go home Wednesday night at 6. So I will be helping her as much as I can and will post this weekend. Hope to hear from you. God Bless. WEDNESDAY Boy has this been a rough week. First of all you really have to watch what ya ask for. I thought I would write my doctors office and see if I could either increase my pain meds so I would not have to take them every 4 hours as I just feel like I am living my life by every 4 hours. Anyway my Dr. thought I should try Duragesic which is a narcotic patch and it continuously stays in your body, well I had tried it before and got some awful headaches and was nauseous. He just wanted me to try for a few days, well besides the stress of everyone staying here within an hour of putting on the patch I was vomitting and continued to do so about every 20 minutes, I could not even stand to smell food so all I could do was drink fluids and even that would not stay down. I tried to stay with it and finally pulled the patch off and within an hour or so I felt better. I called the doctors office to let them know and no one called me back, so I put another patch on and just thought if I just stuck with it a little bit maybe the rest would subside. Again non stop vomitting and a killer headache. So I have come to believe my body does not like that Duragesic what so ever. I really did not even touch the pain either, so finally on Friday they called me back and I just asked if I could just stick with my regular pain control which is Oxycontin 40mg twice a day and 10/325mg Percocet every 4 hours. They did put me back on my Percocet but not the Oxycontin. What a relief, no matter what I have tried it truly seems I have the best relief with the Percocet so I just hope I can just stick to that and I told them if I ever asked to change again to just shoot me. LOL I have completely given up on anything helping me to sleep and right now I am on a 38 hour stretch of no sleep again. Funny thing is my Dr put me on Provigil and it is supposed to help with energy with people who suffer chronic fatigue, etc. Well what do ya know the dang stuff makes me sleep. Leave it to my body to do the opposite, I feel like my system is just so out of whack it does not know what to do. I guess in a few weeks he is gonna put me on a new med out there that is supposed to help with depression and pain. I am so leary of trying yet another medication when I have found at least one that works well for me, but I am gonna try because if it means taking something once a day verses 4-6 times a day then I would be happy. I just hate the trial part and if I will get sick or whatever. I do trust my Dr. though and will at least try it, I forget what it is called but will post when I find out. I truly hate being dependant on something just to live my life halfway normal. I know my limitations now so it is getting easier to say NO to people when I know I can't handle something and not feel guilty. Some of the people in my family still do not try to understand but oh well I have to take care of me and my girls and if I have the energy or strength to do something else then fine. On a good note everyone is out of here and in their own places. I love them all but it was just way to stressful. Now the girls and I just have to get busy cleaning up after everyone's mess. My house has been trashed, but now that everyone is gone it will stay clean when I clean it. We are just gonna tackle one room at a time together and get it done. Okay well gonna go to bed I am actually getting pretty tired so I better get there before it goes away. God Bless and see ya next week. Back To Top MONDAY Hello all, I am back. Took a little break, was meant to go on vacation but it did not end up that way it's a long story. I just took the time off from things anyway and tried to get some things done in my house that have been lacking. Did I get them done? NOOOOOO. I have had 3 really bad flares in the past two weeks, one so bad I really wanted to just check myself into the hospital and tell them to cut my legs and arms off. When the pain is that intense I just cannot deal very well. My arms and legs hurt me the most. If someone even touches me it hurts. We are talking a gentle touch, no pressure and I hate it. Those kept me down for about 6 days total, the rest was pretty good, other than just plain being burnt out and needing rest to recoup. On a great note I was finally approved for Social Security. I put all my thanks to God because it went through the first time, I did not have to appeal and my doctor who is also my angel must have done a great job too is all I have to say. I also got some child support back pay which has been 5 long years in coming and I so deserved that. My ex husband is in jail right now for failing to pay, in Nebraska supposedly if you miss even one payment you get your license taken away, then you go back into court you are given a few months to start paying and then if you don't it means jail time. Well my ex seems to have such luck because 5 years later he still has his drivers license and finally he is in jail. While I don't really think they should go to jail for a long time, it is their choice. He had jobs, he only has to pay $148 a month for two kids so that does not even feed them and he still did not pay so really he put himself in there. He is supposed to be there for 6 months so I hope I at least get some child support for once because they are taking 90percent of his paychecks while he is there. What sucks in all this is I finally had some extra money and I did not have the energy to go spend any. I did go and pay off my bills and we did get some shopping in but it was no where near what it has been in the past. I could only handle maybe one store and then have to go home. I did get my girls some things they really have deserved and that was nice. I bought them a cool Karoke machine that has a little screen on it for the words, they love to sing and put on shows for everyone so this was a cool gift. Then of course the usual bras, underwear and a few clothes. The only thing I bought myself was a new computer desk that took me 7 hours to put together, so 7 hours later, 4 or 5 bruises and finding someone to help me take it upstairs I now have a nice computer desk. I used to love doing that stuff but now it seems so hard. I have no strength or muscle anymore to lift things and since it had a hutch I had to bring it up in two pieces. I only had $1800 to spend so that really was not that much considering my bills to catch everything up took about $1200 of that, but it is sure a relief to have things paid off again. I have just been paying what I had to to keep things going and was a month behind on almost everything but rent. So just having that off my chest was great. My daughter has been dealing with some pretty hateful stuff and has had to move back home. She is in a biracial relationship and her very first apartment and she was living in hell. We are pretty sure it was the neighbors across the hall from her doing the harrassment and it worked because they moved. It was someone knocking on the door all hours of the night at first, then their house got broke into but nothing stolen, then there was ketchup and mustard put all over their entire door and hallway. I finally had her start calling the police to get documentation. She was so scared to stay there anymore so she and my grandaughter would have to come here to stay the night since Larry worked 3rd shift. Someone with a hood was throwing stuff at their window the last night they were there so who knows. The landlord did not know they were a mixed couple until after they moved in because my daughter did everything because he slept days. But his whole attitude changed once he found out, things were not getting fixed and then it just so happens the very neighbor giving them problems was his niece and her husband. I was for the only time in my life really ashamed I was white, not because I am white so to speak but just that I am a part of a race that thinks they are superior to someone else. This is all it could be, we have thought of all other reasons and they had only lived there a little over 2 months and never even said anything to the neighbors so no one was mad, and the neighbor wore nazi shirts and white supremiscists stuff so that was a great clue. It also just so happens the landlord was so very happy to let them out of their lease and give them their whole deposit back. My daughter has a case pending at the equal housing something or other. They sent out two decoy couples with exact histories, the black couple coming first and guess what? The butthead chose the white couple. Then they did a phone call, same lady but she is black but she called "pretending" to be white and was told all about the apt, then in the afternoon called back with a black accent and the apt was not for rent. Then they went back into the landlords rental history and in the last 8 years because that is all the further they could go back, he has never rented to anyone other than white. I was not happy when my daughter chose to date a black man at first, I am not going to lie. But it was not because I was racist, it was because I have seen how hard it is for mixed couples. Then the children sometimes are not accepted by the black race or the white and it is just hard. I just told her finally I don't care who she wants to be with as long as they treat her right. I love my grandaughter and she is the most beautiful little girl. I cannot go anywhere without someone stopping to tell her how beautiful she is and that is not a lie. I am just sad there are still people out there that think they have the right to be rude to other races and it goes all ways not just white people, black people are prejudice, mexican and on and on and it just needs to stop. God made us all. At the exact same time my brother and his family had to move too. They had been living out of town and the landlord was selling their house since they were on a month to month lease they had to basis to fight to stay. So guess what everyone is here at my house. 10 people all under one roof. Why did I not take my vacation? I am happy to help out and everyone has pretty much been getting along and I have been pretty good at keeping my stress level under control, which has been very hard because I tend to stress out, probably why I have had some bad flares too but we shall survive. We have all had to give up our rooms which is hard, the girls' room went to Grandpa, Grandpa's room went to my brother and the play room went to Erica and then of course the girls came to my room to sleep with me. I told everyone when they came that I pay the utilities and rent anyway so they just needed to save most of their money to move, but everyone had to chip in for food because that I cannot afford to do. Well so far in 2 weeks Erica has bought pizza for everyone one night and my brother has given me $40. I went from feeding 4 people to now 9 and that is hard. I do not want to complain but now I am stressed that they are all gonna move out and it will be us without food because I spent all my extra money on groceries. Why does family do that to family? I love them all but if the situation were reversed I would never expect anyone to feed me or my family. I know God will get us through he always does so I just have to let it go. Erica has a new place and is moving this weekend and I hope my brother and his family find something too soon. It is so hard for everyone to have to live with someone else. Well okay I guess I had a lot to get out about nothing, but this does help me to get things out instead of bottling them up and stressing out and then stress causes me pain and blah blah. I don't know if I will ever get used to this new life God has given me but I am sure giving it a shot and I pray daily for him to give me just one pain free day. I am truly blessed to have a great doctor who listens to me, wonderful children, a roof over my head and lots of love in my heart. So until we meet again have blessed days, a happy heart and take it one day at a time. If you need anything at all please email me and together we can find a solution. Bye for now. Back To Top TAKING A MUCH NEEDED BREATHER!!! I am taking a vacation and will be back in a week. So please come back by and I will get ya caught up. Later MONDAY Well this week has been a good one. My pain level has stayed at around a 6 with a bad day on Saturday but I got through it. I realize now how important my medication is to my body and I have to accept that. I have had a great week though except for sleep, but I am getting so used to that. If I get 3 hours of sleep at a time that is heaven to me anymore. I give up on sleep medication because they work for a few days and then don't, so I am just not going to keep taking something that doesn't work. My babies have been going to my sisters to help her a lot so they have been gone, one goes one week then the other to help her with the new baby and my nephew. I told them they have to stay home now because I miss them too much. LOL. Today is my babies 10th birthday. I can't believe how big she is, 10 years ago today at 7:59 am she came in the world and was so beautiful. Still is. We were putting our feet up to each other tonight and all be darn if hers are only about a size smaller than mine. I wear a size 10 and I could not believe it. She says big feet mean a big smart brain, don't know about mine but she sure is smart. I am home schooling again this year and I can't wait. I am just not happy with public schools anymore. My girls are just learning so much that I don't want them to learn. Kids bring knives and guns to school, drugs on top of my middle daughter has been passed through and she did not even know the stuff she was supposed to know in her grade. I never knew until the last time I homeschooled them when we were in Georgia, she was in fourth grade and did not even know how to subtract. I believe it was because I homeschooled them that she got ahead and up to grade level. Then when we moved back to Nebraska I put them back in public schools and I am just not happy and neither are they. So if anyone has any good advice on where to get some inexpensive home schooling supplies then please let me know. I am a little scared when it comes to junior high but we will just have to work through it. I know they will do better with me than in public schools. I don't blame the teachers because I know they work hard, it is just that kids are experiencing so much at home and they bring that to school and time has to be spent on that. It is a statistic that in a 7 hour school day only 2 actual hours are spent on education. The rest is spent on recess, lunch and social issues. I have a little story I wanted to share with you that is really funny but was scary to begin with. My oldest daughter lives on the block next to mine, I live on 7th street she lives on 8th. Well she and my grand daughter walked over to my house today so I could run her to the bank. On her way here a few houses down from where she lives, a woman had been smelling a bad odor coming from a car in her neighbors driveway so she called the landlord and then the police. Well the police kicked in the house door because the neighbors were reporting that no one had seen the couple or anyone around there since saturday. So anyways the police finally broke open the trunk of the car. Well I went to get my other two from the pool and as I drove by I noticed the whole block was taped off and there were about 11 cop cars. I called Erica and told her there must be a body cause they are making a crime scene. So we drove over there to her apartment and she walked down and talked to the police, they said they weren't sure what it was at this time, but it was something in a garbage bag and there was a hand or what looked like a hand. They also said they were pretty sure it was not groceries because of the odor, now it has been in the high 90's this whole week so whatever it was people in the whole block had been smelling it, just no one til today had said anything. They could not look inside the bag until the crime scene investigators arrived so it was just a waiting game for now. The sad thing in all of it was the neighbor said it was either a small child or a cut up body because of the size. Anyways my daughter is freaking out because her man works nights and she and the baby are alone from 10 pm until 7:30 am. I am kind of worried because there was another woman killed yesterday in her home while her children were sleeping about a mile from us and I have two little girls I let walk to Erica's house all the time to visit since it is really just across the street if they go between houses. She answered the policeman's questions and then asked if they would be notifying everyone if it was a body and he said yes, two homicides in 2 days if we don't tell you it will be all over the news anyway. So we went to do her errands and a few hours later after we spent that time playing the what ifs, we came back and as we drove by we noticed that there were only 3 cars there now. Okay I know you are thinking this is not funny so far, well here is the funny part, they got ahold of the couple who lived there. Turns out they just got married and were on their honeymoon, the stuff in the trunk was left over food from the reception they forgot about and the hand, well that was the hand in hand decoration from one of the cakes or tables I am not sure what they said. THANK GOD but it does make you realize maybe you should be a little careful with your children and you should make sure your doors are locked at night. It is sad and this turned out to be something funny instead of something awful, but you have to be careful becaues there are so many bad things that happen in any neighborhood. My sister asked if I was going to move, I told her no, this is a nice neighborhood and is safe. Not only that but this stuff happens in all neighborhoods so where you live really doesn't matter. I would die if anything happened to any of my children, and I will make sure they know I love them at least once a day and I will make sure they take the extra steps to be safe. I still don't think I will be letting them walk over to Erica's by themselves now, this was my little warning to be careful. They are 10 and almost 12 now and at their age I was out playing all over until my dad whistled for me to come home, but I just don't think you can do that anymore. My kids have never even walked to school by themselves even when we only lived a block away. Overprotective I know I am but I only have a small amount of time where I have control and then they are on their own. I am gonna do whatever is in my power to keep them safe and healthy until then. Okay so I hope you have a great weekend, we are having my daughter's birthday party on saturday so I hope it is a nice day. I hope I have a good day pain wise, but if I don't then I dang sure am gonna pretend I am. I am tired of ruining our fun because of how I feel. On another good note I have lost 16 pounds in the last few weeks so I am hoping I am on my way to loosing the rest of the weight I want to. Bye for now. Back To Top THURSDAY  This has been the worst week of my life it seems. Okay well my purse was found, meds intact but money gone. Great news, only to have it stolen again on July 4th. At least I was smart enough to have only put the days worth of meds inside this time and so far I don't think I will be getting it back. So I was a day and a half short of my pain meds and I do not know if I went through some sort of withdrawals or I had a really bad flare because I was in the worst pain I have had with this so far. My legs were twitching so badly, like a jolt of electricity going through me about every 5 minutes. Nothing else really bothered me but if someone would have offered to cut my legs off I would have let them. I was trying every thing I could to help, I cried, I took a hot bath at least 5 times, tried some icy hot my daughter brought over which did help for about 15 minutes. Nothing I did worked. I literally wanted to die. So finally my oldest daughter came over and I just could not handle it anymore, so about 1a.m. on Tuesday she called my doctors office, well his partner was on call and my daughter was trying to explain that my purse was stolen and I was in pain beyond control and before she could finish trying to ask him if it could be withdrawals from not having meds for a day or if it was something else, he yelled at her saying she was wrong for calling at 1am in the morning telling him this and I either needed to tough it out till the next day or go to the hospital. I was so humiliated and just bawled. You know I realize doctors are human and no one likes to be woke up in the middle of the night, but isn't that why a doctor is on call? Am I not “allowed” to have my purse stolen simply because I am on a controlled drug? I am sorry but that just pisses me off when someone assumes that because someone who takes pain meds or whatever is going to fake a theft to get more meds. I know it happens, but life also happens. I could see if it happened continuously or was suspicious, but is it not worse to prescribe something for someone and they rely on that to get them through and then make them suffer? Or humiliate them? I wasn’t even asking for them to be replaced, but I did later read on a site that being without cold turkey can have fatal affects. I just wanted to know what to expect but no one even called me. If it were not for my children and for my inner strength and faith, that would have been the day I would have called it quits and ended my life. I was in pain and I was humiliated. I have been tested both emotionally and physically this last year and I have to find the good in it. I did finally go to the hospital and basically as soon as I said I had fibromyalgia and everything else that was what it was, I was having a flare. I got a shot for nausea since I had been throwing up all day from the intense pain and another shot of something for pain relief. It did allow me to go home and get a few hours of sleep before it all started over again. Now I got to thinking, if I tell a doctor or whoever that I have fibromyalgia is whatever pain I am having going to be lumped into, "oh that is just a fibro flare, so go home and deal with it?" That worries me, I was just starting to believe I was being taken seriously and then I had this kind of setback. I realize I am going to deal with chronic pain the rest of my life probably, and I know there are differing opinions as to if it gets worse or gets better with time, but it is not the all purpose diagnosis to whatever ails me from now on. I still may have a heart attack, or a pinched nerve or whatever. Another issue I have dealt with this week is just getting my prescriptions filled. Now don't get me wrong I really appreciate my doctors office and they really have been very supportive of me thus far and I have been a real pain I am sure. For some reason I have to get my prescriptions refilled every two weeks, versus a month like I would like and most people get. It costs a lot more to do it this way also. I feel like I am a child asking for my allowance. It repeats every 2 weeks. So here is the process, I call in (which I have been trying to do it a day ahead so I can just pick them up in the morning)and I say I need my oxycontin and percocet refilled blah blah blah. Okay now no one calls me and lets me know when they are ready to pick up, which I completely understand they do not have the time to do that, but I call like a few hours later, then most of the time they are ready around noon so I call at noon, then an hour later and you get the picture. I feel like a drug addict waiting for my fix, but in reality I am just waiting to go pick them up, run a few errands while I am out and get everything done at once. It is just so embarrassing to call and say, "this is joannie and I was just wondering if my scripts are ready yet?" about 5 times until they are. I wonder if they feel like I am just some hypochondriac wanting my pain meds. The truth of the matter is after this week I will NEVER be without them again for even a half a day. I cannot deal with that pain again or I will die one way or another. It is an awful feeling to realize that a few little pills run your life. If you don't have them you just want to curl up and fade away, if you do have them then you get some relief to do just some of the things you used to do. I HATE being dependant on a drug, I HATE "begging" to get my scripts filled, and I HATE that I am not who I used to be. My life is now down to 4 hour increments just to live normally it seems. I do not want to ever give up my fight to live as "normal" as I now have to, but I have never depended on anyone or anything in my life and now I have to depend on a little pill. This is not me, but yet it is the me NOW. I know there is a reason for this, maybe God is just telling me to slow down and take care of myself for once, but it is just an awful way to get the point across. I know I am not addicted but I know I am dependant and I will never again feel guilty for relying on pain meds. I will never again doubt someone's pain because I know what it is. With all this complaining, and for that I apologize, but from the many emails I get I here the same things I am living. But I AM thankful for my life, I am thankful for my family, I am thankful for my children and I really do enjoy life still. It is just a little slower pace now and I am still learning to give up on some things I can't do anymore. It is a constant inner battle within your own body, your mind wants to do what your body cannot. Will I ever get used to it? Or will I continue my fight to overcome this? Or will I just quit thinking about what used to be and deal with what is and that is still amazing? The question changes daily, but I have the inner strength and faith to pull me through and live my life happy and peaceful. Thanks so much for letting me vent and as before please email me if you need any support, or someone to just bounce an emotion off of. I am here to help in anyway I can and very eager to meet a new friend. Have a blessed day. TUESDAY Well our family has a new addition!! Emily Marie was born yesterday at 2 something, I was there but I forgot the exact time!! My sister and I made up and I really am glad because I wouldn't have wanted to miss this for nothing. She weighed 7lbs 14 oz and was just beautiful. She looks exactly like her brother to me. I can't wait to see her grow up. My sister was a pro, I have so much respect for her, she worked through the pain and did an excellant job, no stitches or tears and both are doing great. It amazes me how you put a baby to your breast and automatically it knows what to do, and she did she nursed for a good half and hour looking around and taking it all in. On a rotten note, my purse was stolen with all my medication in it. I just hope whoever did it turns my purse in, I don't care if they take everything else but if they leave my medicine then I will be happy. I am worried if I will go through withdrawls since I can't get anything refilled until a week from now. I am just such and idiot, this is like the 3rd time in a year my purse has been stolen and it is because I have left it somewhere. My brain just does not work the way it used to and I hate it. I would have never left my purse before anywhere and now I just forget and then when I remember it is too late. I called my doctors office to see if I can get my meds refilled but it may be out of their hands. I don't even know if my insurance will fill them anyway so soon. If they don't it is my fault and I will have to suffer through somehow. I have prayed though and just maybe someone will be honest enough out there to bring it back with at least my meds in it. If they don't know what they are they will not be stupid enough to try them, but if they do they have hit the jack pot on pain meds that is for sure. I thought putting my meds in my purse were the safest place simply because of the babies in my house and I was trying to be so careful with everything. Oh well I still have hope so who knows. Well until next time have a great day and thanks for your emails of support I really appreciate them and I hope I have helped you too. Back To Top SUNDAY Hello all!! Well this week has been pretty good, pain wise. I can honestly say I slept a lot and my pain level was very tolerable, which for me is perfect. I was able to get some things I had been putting of for a quite a while now done. I have been putting in lots of work on my PSP creations through the Brat Pack which is always fine and keeps my mind off of things for a while. The weather here in Nebraska is beautiful, in the 70's all week. I feel like a new woman all I have to say are good things for once and I am truly happy right now. It is amazing how just a few pain tolerable days and you feel like a new person. I know taking my pain medication is what helps the most because if I don't then I just want to crawl in a ball and cry. I was for a time feeling so bad about taking them and then a lady I met through a support group told me if I had a heart problem or diabetes would I take medication? Of course I would, so she said why is this any different? It clicked cause she was right. I rely on pain meds to help me have a normal day just as someone with diabetes relies on insulin. The only difference is there is no controversy everywhere on TV and the newspapers about insulin. I am responsible with my medication, and yes I am dependant on it. I am not addicted to it, I don't use it to get high or feel different, I use it to take the edge of the pain that without it would be unbearable. With all that has gone on in the past year trying to figure this out, my outlook on life has been the same positive way, but at the same time the pain I felt made me suicidal. I was not depressed, not wanting to be out of this world because of any sad things or whatever. I was wanting to die simply to end my pain. I could not figure out why this body I have had for over 37 years was betraying me. Why I was not able to just relax or go to sleep and wake up better. And why was I not getting any answers to my questions. I cannot ever express enough how grateful I am to my Doctor and his nurse. They listened to me, they let me cry and sound stupid and they helped me. I know I would not be given something just to be given it. I know we weighed all the answers and solutions together. His office gives me the freedom to research a drug and refuse it if I do not feel comfortable, that is what I recommend to everyone out there suffering whether it be MS, Fibromyalgia, Chronic Fatigue or Lupus or anything really. All of these are so closely related that without the help of a good doctor that understands you are left on your own to deal with something you have absolutely no control of. On a sadder note this week my sister and I are back to fighting over some stupid issues and I am sad. I was supposed to help her with my new niece but because of some things she and my brother in law said that I just can’t get over I am not going. With my family I feel so lost. It is like I do not exist or I am not allowed to have an opinion or feel what I am feeling. It is like no matter what I do or what I go through I go it on my own with no support or acknowledgement. I can’t even get sick right. I have gotten more support through strangers than I have from my family. If I can’t give a piece of myself to everyone like I did before then I am just ignored. I used to spend all my time making everyone happy and being there for people no matter how they treated me, but I can’t do that anymore. I physically cannot do it, and emotionally I am just too drained. My sister says to get over it because she has, but the hurtful things were not said against her, she was the one saying them about me. Completely untrue and unfair statements are always made and they go back and forth through the family and I find it better to just stay by myself and that way I don’t get hurt. I had 3 kids, 2 of them 20 months apart and I had a c-section twice, and was still breastfeeding one when I had the other one. I had no help with them, I just did it and I enjoyed every stressful moment of it. But yet me, the one everyone wants to cut down, who is physically limited was asked to help and even though I have made great strides in being able to say no I can’t agreed to help my sister after the baby was born. But it was one thing after another that was expected or said of me to the point where I just did not want to do it anymore. I am expected to accomidate everyone else but when it comes to me well I just have comply with everyone else’s terms and conditions. I am simply not going to do it anymore, for me whether I have this ailment or not. I needed to do it a long time ago. Not doing it has let everyone run over and take every little piece I had to give and now I wore my body down and it is forcing me to relax and do for me. I don’t have the option of spreading myself thin anymore. Not to many people like the new Joannie who sticks up for herself. Okay enough of that!! I make daily strides to improve my health for myself and my children and that is all I can do. Everything else will just have to follow the way God wants it to be. Til next time…… P.S. If any of you can’t sleep like me, a good group to join is the Brat Pack Paint Shop Pro Internet Group. It is a members only and I have said it before that they are just a great group of women. You can create things with paint shop, or you can do recruiting, share recipes and all kinds of things. When I can’t sleep or have a bad day with pain it really does help to do something to take your mind off of things for a minute. Okay I will go. Catch ya later. Previous Entries Back To Top |
