Journal2

Tuesday, July 4, 2000

Today is just another day for me. I can remember a time so long ago that I was able to celebrate this and other Holidays. Not only has this disease robbed me of being able to go out and enjoy life but it has also robbed me of friends. After being told "I don't feel well", they soon quit asking. I can't blame them either. Being around someone who feels bad physically and mentally is no fun for either party. My mind is still young and still wants to enjoy life and outside activities but this body won't let me anymore. Slowly it is trying to rob me of my mind as well. The new anti-depressant that I have started taking seems to be working fairly well. It is called Paxil. For years I took Prozac and had good results with it. I guess our bodies soon build up and immunity to a drug after taking it for so long. I tried Effexor for only a few months but it seemed to have no affect at all. I am hoping this new drug will be able to give me some relief from the depression that always seems to accompany any chronic illness. I just found out that the web site "Fibrohugs" has started a new forum for people who have lupus in addition to the fibromyalgia. I was tested for lupus when I was seeking an answer to why I felt so bad and it was ruled out at that time. My brother, Tommy, has lupus and has suffered with it for many years. I believe that he also has fibromyalgia. I'm hoping that the new forum at "Fibrohugs" will be of benefit to him. His daughter, Tammy, has chrones disease. It seems as if our family will be struggling with un-curable chronic diseases for many years to come. I just hope that it stops with the three of us and no one else has to endure the misery that we have had to deal with for so long. Maybe tomorrow will be a better day.

Thursday, July 6, 2000

I'm slowly trying to recover from that long trip to Oklahoma City yesterday to see the Dr. who is monitoring my fibromyalgia. He has decided that I need to stop taking the trazadone. He thinks this may be the cause of my daily outbreaks with hives. He increased my paxil to one 20mg tablet twice a day. I'm to continue taking benedryl for the hives and to help with sleep at night. From past experience I don't believe this will help me sleep but I'm willing to try anything to keep the hives from occurring every day. I still haven't heard anything from the Social Security. From what I've heard from others who have filed for disability it is a very long drawn out process. I will probably have the same slow responses from them as I have had from Worker's Compensation. Although, I feel very lucky that I have been able to receive Worker's Compensation for the carpal tunnel as well as for the fibromyalgia. According to my attorney, the worker's compesation laws have changed for fibromyalgia and I don't think it is now a covered condition in the state of Oklahoma. Even though I do receive compenstion, it hasn't been easy. They have tried hard to starve me out, but it's not going to work. My credit is being affected because I don't have the same income as when I was able to work, but I am doing the best that I can.

Monday, July 10, 2000

I am currently in a deep fibro "fog". I'm having trouble concentrating on any one thing for very long. I've got my nights and days mixed up too. I can't sleep at night and end up dozing off and on all day. I'm expecting my Mom and brother to come for a visit in the next couple of days and hope that I can escape this current hold that FMS has on me so that I can at least enjoy my visit with them. I am never good company anymore. I guess I withdraw because it's easier than trying to pretend I'm feeling ok in order to interact with others. I haven't worked on my web pages in awhile and need to try and add some new things. I'm fading in and out alot right now so - hopefully, tomorrow will be a better day.

Wednesday, July 19, 2000

It is almost 3:00 AM and I haven't been able to get any sleep. Actually, I haven't been able to sleep for a couple of weeks. If I'm lucky I might doze off for an hour or two.

My Mom and Brother came for a visit this past week-end. It was sure good to see them. I felt really bad so I wasn't able to enjoy their company as much as I would have liked. Each time I get relief from one symptom of this crazy "syndrome" another takes its place. I had to go in to town to have a prescription refilled today and it made me so tired. Just trying to make myself presentable to go out is such an effort. I feel like I am a prisoner in my own home. I am so very tired of feeling this way. I'd like to be able to go to sleep for a very long time. There is no escaping this "invisible monster" that seems to have such a tight grip on my body and my mind. Tomorrow just HAS to be better.

Saturday, July 22, 2000

I'm so tired . . . tired of feeling tired, tired of being depressed, tired of all the pain, tired of being alone, just so very very tired . . .

Wednesday, August 2, 2000

It seems like it has been months since I have made any entries in my journal. I haven't felt much like doing anything the past few days. I haven't been sleeping much which of course causes the "fibro-fog" to be heavier. The doctor took me off of the trazodone, which was the medication I was taking to help me sleep. The reason for that was to see if that medication was causing or contributing to the hives . The hives have decreased in the number of times they have been occuring. I am still having them but not as often. My medications at this time include: Procardia XL, Synthroid, Celebrex, Paxil, Lortab 10, and Pepcid. I have received a letter from the Social Security office, stating they have made an appointment for me with a local doctor for a physical examination. I am in the process of putting together copies of all of the medical records, depositions, court orders, and any other information that I feel would be of benefit to him. I have found that keeping an updated medical history and taking it with me to any new doctor saves us both a lot of time. I have also contacted my State Representative and given him a summation of my medical history. He as agreed to contact the Social Security office on my behalf. I became acquainted with him when I was employed, so he is aware of my condition. Being personally acquainted with him made it more comfortable for me to ask for his help. I would have asked for his help even if I had not known him. In the past, I have asked my Congressman for help regarding an entirely different problem which involved a friend of mine. He was successful in getting my friend the help he needed. If you are applying for Social Security Disability, you might try contacting the Representative or Congressman of your state. All they can do is say "no". I will keep you posted.

.Saturday August 12, 2000

I had a workers compensation court hearing on the 8th. The purpose of the hearing was to get approval for me to see a psychiatrist to help with the depression and medication for that and to help me sleep. It was hard to tell how it went. The insurance company had hired a new attorney and he was trying to say that the court had never approved treatment for fibromyalgia. The doctor I had seen for the insurance company also stated that the fibromyalgia was not a result of my on the job injury. I had previously received a 10% disability in the first court settlement so I am hoping that proves it was a result of the carpal tunnel. After I had testified , the judge called both attorneys up and told them both that this case needed to be settled, that it had gone on long enough. My doctor that is treating my hands had stated at my last appointment that he felt they had done all they could medically for me. We are to discuss work restrictions at my next appointment which is August 23rd. This means the checks will stop at that point. That really scares me because I truly don't feel I will be able to hold down an 8 hour job, even if I were to find someone willing to hire me. There are no jobs that I can think of that do not involve the use of my hands. If any of you are aware of any, please let me know.

Thursday, August 24, 2000

I went to OKC yesterday for a check up on my hands and arms. The doctor injected the scars again. I thought he was going to release me, but he has continued the TTD rating. I talked with my attorney yesterday and he said the insurance company had submitted a form that basically said no further medical treatment is necessary . The attorney said they will appeal this motion due to the fact that I am still under treatment for the scar tissue. These injections need to be continued because the more scar tissue that forms, the more chance there is that the scars will compress the nerves again, which will result in more pain. I'm really getting concerned right now because I know there will be a period when I will have zero income. Since I'm already past due on all my bills this will really hurt my credit. I'm doing my best not to let it get to me and taking one day at a time, but sometimes it gets too overwhelming. I have an appointment on the first of September with a doctor for the Social Security claim. I'm trying to compile as many records as I have to give to him for reference. Wish me luck.

Sunday, August 27, 2000

I've survived another uneventful weekend.. My pain level has been at about a 5 or 6 which is NORMAL for me. I've started trying to exercise again. I actually moved my glider out of the spare bedroom and into the living room so that it is more visible. I've even gotten on it a few times this past week. I spent about 20 minutes on it today. I guess I was actually creeping rather than gliding but at least it is a start. The first time I got on it , I really paid for it the next day. I know that exercise is the best thing for me but it is oh so hard . This past year has been a very inactive one for me and I' m doing my best to change that as much as I can. When "they" said "no pain no gain" , they had to have been talking about fibromyalgia. I miss the days when I was a "normal" person. I so enjoyed getting out and doing things. I've spent a lot of hours day dreaming about what could have been and looking back on what's already been done. Just five more days until I go for the physical for the social security. I never dreamed that I would be hoping to get social security disability . I had planned to work as long as possible, but I guess "things happen".

Monday, September 4, 2000

I can't believe it. I have felt almost like a normal person the past 2 days. Of course I've had the early morning stiffness as usual but once I got up and moving I've done really well. I've only had to take two pain pills all day. I had my grandchildren here since friday. Friday and Saturday I didn't feel much like doing anything with them, but the last two days we have really had a nice time. I'm hoping the feeling will go on through the week. I have another doctor appointment on friday with my FMS doctor. I'm not looking forward to that 3 hour drive there for a 15 minute doctor appointment and then the three hour drive back. He always ends up making me wait over an hour after my appointment before he finally sees me which adds to the misery. Last friday, I went for the appointment with the doctor who examined me for Social Security. His total exam took about 15 minutes and he was on his way again. He made me walk across the room twice, walk backwards once, try to walk on my toes and try to walk on my heels. He then listened to my heart and lungs and said "that's all I need". That doesn't give me much hope at getting approved for disability. It's amazes me how doctors and others as well, can look down on us and decide how "we feel". It is hard to accurately measure someone's pain because the person with the pain is the only authority about the existence and nature ot that pain, since the pain can only be felt by the person who has it.

Saturday, September 23, 2000

It has been awhile since I have made any journal entries. I spent the last week and a half with my Mother in Idabel, Ok. She is 83 years old and still living alone. She gets around quite well, especially for her age and medical condition. She has had a couple of strokes which left no paralysis but she does have to take seizure medication. We had a very nice visit. I've been pretty exhausted since I've come back home. I have another doctors appointment on Monday in Oklahoma City with the doctor who is treating my carpal tunnel. He is presently injecting cortisone into the scar tissue because I tend to form keloid scars. Hopefully, the injections will cut down on the scarring and prevent more pressure on the nerves. I still haven't heard anything regarding my application for Social Security Disability.

I haven't been walking or exercising like I had planned. I'm in another one of those I don't care about anything state of mind.

Tuesday, October 10, 2000

I've had to make two trips to Oklahoma City the past two weeks and it sure has made it difficult to cope with the daily "fibro-pain". One was for a followup with the doctor who did my last surgeries on my hands and arms. The other was to a doctor to give me a "rating" for Worker's Compensation Court. I have a court date on November 7th. I guess at that time the judge will determine whether or not I will continue receiving checks. It's pretty bad when someone else gets to decide how you feel, and whether or not you are able to continue working. It seems as if I have no control over my body or my life. The doctor I saw yesterday was telling me about how there is a method of implanting something that will dispense pain medication. I can't remember what she called it. She couldn't prescribe it for me because she only does reports to the Worker's Compensation Court and does not treat patients anymore. If the psychiatrist isn't successful in helping me to cope with the pain I may try to find out more about the device. Right now I'd rather not go to that extreme. Both of my hands and arms have really been hurting me more lately. It feels as if there is a fire inside of them that doesn't go out. I guess it could be because the weather is getting cooler. I'm hoping it will settle down soon or I will be able to tolerate it better after awhile. I've gotten pretty could at being able to cope with pain but some days are just too much for me. I don't really know if this journal is helping anyone else, but it does seem to help me. I would like for more people who visit my site to sign the guestbook and let me know whether or not what I am doing is helping them. My memory and mental status has really changed the past few months too. I can't remember the simplest things. I seem to be feeling very anxious lately. The other day when I was coming from OKC I got really upset. I don't know if it was the traffic causing the anxiety or not. It felt almost like a panic attack. I actually had to stop a couple of times and walk around a little to try and settle my nerves down. This has been happening alot when I am just at home too. I get real anxious and upset over very minor things. It's like I'm losing control . . ..

Monday, October 16, 2000 3:13 AM

I am having trouble sleeping so here I am on the computer at 3:13 in the morning hoping I will be able to lie down soon. Last week I got another letter from the Social Security . They have set up another doctors appointmnet. This time it is with a psychiatrist to test my mental well being. I also got a phone call from the office of our Oklahoma State Representative. They wanted to let me know that they had received a letter from the Social Security Disability office saying they had recieved all the medical reports and etc. and were waiting on the report from the psychiatrist. This gives me hope that I may possibly get approved the first time around. I would advise any of you that are preparing to file for you Social Security Disability to contact your state representative and ask for their help. It is reassuring to know that my request for help from my state representative wasn't just put on a desk somewhere . The appointment with the psychiatrist is for November 3rd.

Saturday, October 21, 2000

Here it is another weekend. Another weekend of being alone, in pain, and yes, feeling sorry for myself. Heck, if I don't who will. I did have my first session with the worker's compensation therapist. He seems ok. Right now all we are doing is trying new meds. He took me off of the paxil and put me on Wellbutrin 100 mg one to two times a day. He took me off the ellavil and put me on 1mg of Clonazepam twice a day. The Wellbutrin is the antidepressant and the clonazepam is for anxiety and to help me sleep. It does help a little with the anxiety but not sleep. It doesn't make me sleepy at all. When I do fall asleep though, I have nightmares, I don't know if that is from the wellbutrin or the clonazepam. I guess I will be going to him every two weeks. He said his wife has fibromyalgia and is taking just about the same medications that I was taking. I think he said she goes to McKinney to a support group. That is much too far for me to drive right now. He said the Wellbutrin sometimes causes you to loose your appetite, which will be a plus for me because all my weight gain is starting to bother me. Mostly because I have no clothes to wear other than t-shirts and sweat pants. But since I don't go anywear clothes aren't an issue. I have really been low the last few day and wondering why I keep going on. The doctor discused my thoughts of suicide and I told him that I don't want to do that because I want to be with my family again someday in a place where there is no pain. He asked me how I would feel if I were to get run over by a truck, no one has ever asked me that before but without hesitation I told him that would be fine. Dying would be a relief from EVERYTHING. I sit here and wonder, what the point in continuing is. When I try to think about my future, and if I have one, I don't like what I see. My world consists of pain, depression, no social life, no future at any kind of job that would be profitable. I have no desire left for anything. Any future that I ever had a hope for has all been taken away by the condition of my hands and arms and this damned thing called fibromyalgia. I don't want to continue the kind of life that I've been living for the last 5 years. Each year I have hopes of things turning around and of being able to feel good again and be able to at least enjoy my grandchildren. But each year my condition gets worse . My grandchildren don't even come very often anymore because I am unable to do anything with them. Now this DD (damned disease) is even robbing me of my abilitiy to think clearly. I forget things all the time, I can't concentrate on anything for very long. I was once a very intelligent person who had high hopes to make something of my self. But all that is gone now too. Mental confusion is yet another symptom of this DD. My family tries to make me feel needed but who needs someone who's disposition and mood do nothing but even bring those closests to you down into the depths of darkness and lonliness. I don't want to subject my family to that, they all deserve more. My strength is rapidly running out and my desire for anything is gone. The thought of living out the rest of my life like this is a living hell that I don't want to endure anymore. This DD has taken control of every aspect of my life, my health, my mental abilities, what little social life I had, my strength. It has even taken over my financial situation. I'm not even able to live from one check to another. Tomorrow has disapeared.

.November 2, 2000

Tomorrow is my appointment the Social Security Disability Determination Division has set up for me in Sherman with the therapist. I'm hoping they will make a decision one way or another soon so that I will at least know what is going on. I've never been very good at waiting. My anti-depressant medicine has changed to Wellbutrin which seems to be helping. At least I don't feel quite so hopeless. Dr. McCorkle also prescribed an anti-anxiety med for me which helps. I have another hearing with the Worker's Compensation Court on the 7th which has been on my mind alot. It will determine whether I should continue receiving temporary total disability or not. In other words, "they will decide if they will stop paying me or not". It's pretty sad when someone gets to sit in a big chair behind a big desk and decide if you are well enough to continue working. How is it possible for someone else to judge someone else's pain? You can be compasionate about it but there is no way you could know how much pain they are feeling.

Thursday December 21, 2000

Things seem to be steadily going downhill. The Worker's Compensation Court has terminated my checks, which leaves me with ZERO income. What a great time for it to happen, Christmas is here and I won't be able to buy for my Grandchildren. It's hard to explain to children "why Nana can't give them gifts this year". The next step with Worker's Compensation will be getting a disability rating. I will have to see a doctor for my attorney and then again for the insurance company. This could take as long as 6 months to happen. I've applied for an appeal to my social security claim which was also denied this month. I expected that to happen, it must be standard procedure to deny the first claim as well as the appeals. I think they hope that you will get frustrated and give up. I went on Monday to finalize the Bankruptcy.

I've never had to seek help from the Department of Human Services until now. Food stamps is the only thing that I qualify for. I got that taken care of today but it won't go into affect until January. Having a chronic illness not only affects your physical and mental well being but your pride as well.

I feel so totally helpless once again. It would be so easy to just give up. I know I should look around me and see how there are many people that are much worse off than I am, but it sure is hard to do.

I will have to discontinue my internet service and probably the phone as well. This will mean I will loose what little contact I still had with the world outside of my home. My pharmacy contacted me last week to let me know the insurance company has stopped paying for Procardia which is for my high blood pressure as well as for better circulation to my hands and arms. They have paid for this drug since 1993. My attorney said the reason they have discontinued payment is because the doctor that is currently prescribing it for me is not considered a treating doctor for worker's comp. I will need to try and get the doctor who is treating me for the fibromyalgia to prescribe it. I don't think he will do it because he won't even prescribe pain medication for me. I had been getting the pain medication from the doctor treating the carpal tunnel. He has released me so I'm afraid I won't be able to continue getting the pain medication. I have trouble functioning while taking pain medication so I'm really concerned about what my condition will be without it. I don't care for the Doctor who is treating the fibromyalgia but because the Court appointed him , I'm stuck with whatever he says. It seems like I have no control over anything anymore, I am constantly at someone else's mercy.

Thursday January 11, 2001

This will be the last entry in my journal. I will not have access to the internet. This year has not started off so well for me, and I see no relief in sight. My income from Worker's Compensation stopped as of December 7th. At this time I have no income whatsoever and no idea how where or when I will have again. I was able to get food stamps from the Department of Human Services. That is the only program that was available to someone without children in the home. Needless to say, the depression, hopelessness and all those other deep dark feelings have returned. I try not to worry so much, but how in the world do you not. I guess one good thing is that I don't have any children in the home and my own welfare is all I have to worry about. I've never felt so hopeless and alone. I know I will have to seek some kind of employment but have no idea what. I don't even have clothes suitable to go job hunting in. I have gained so much weight, there is nothing I own to where except for sweat pants. I have put on over 60 pounds in the last year. My 5'3" frame doesn't hold 210 pounds very well. That of course makes me dislike myself even more than I already do. Not being able to do any kind of exercise has sure made a difference. This past year I have been secluded in my home and basically sit or lie down all day and night. I've tried walking but the pain that I have to endure both during and after is not something that I look forward to. My daughter's car broke down and she needed a car to get back and forth to work, so I loaned her mine. I have been without a car for almost a month now. I only used it to go back and forth to work so really haven't missed it, but will have to have it in order to try and seek employment. I didn't realize how important a car is until I didn't have access to one. Even though I didn't need it very often, I knew it was there if I did need it.

I have filed an appeal for re-consideration with the Social Security Disability. From all my research regarding disability, I will probably be turned down again. The next step will be to ask for a court hearing that I can be present at.

I've never felt so scared and alone as I do now. I can't imagine the state of mind a homeless person must feel. I use to think they could go out and get some kind of job but now I feel I understand their situation a little better, and it scares the heck out of me.

Anyway, I wanted to make one last entry in my journal that will be posted on the internet. I will probably try and keep it up, just in case, some day, I will be able to get back on the internet. The net was one of my ways to feel somewhat a part of the ouside world and I will miss it, but . . .

July 11, 2001

Well, I just made a MAJOR "fibro fog" mistake. I am at my brother's home and thought I'd do some updating on my web site, using his internet access since I am still too FINANCIALLY EMBARASSED" to get back on the internet at this time. During this process, I managed to delete the entire beginning of my Journal entries, where they went I have no idea. Oh, well, it probably bored most of you anyway. I am keeping the journal for my own "therapy". Since I last made an entry there have been a few new developments. In February of this year I made my first attempt at trying to get back into the work force. My first attempt was going to a friend of mine who operates a "Caregiver Service". I thought that I could surely handle sitting up at the hospital with patients. WRONG!! I did it twice and both times it put me in bed for a couple days from the physical as well as mental exhaustion. My next attempt was to apply for a receptionist postion with a local Alcohol and Drug Couseling Service. I applied for the position and was called in for a face to fact interview which went quite well. I thought I was doing the RIGHT thing when I answered their question about why I had been unemployed for the past four years. I told them it was for medical reasons but I was ready to attempt to re-enter the work force. My interview was on a Wednesday and I received a phone call from their office. The woman that I spoke with on the phone told me they wanted to have me in the office by that following Monday. She said they just needed one more item of information. They had already checked out my references but she said the office Manager wanted a letter from my doctor. (Which I am not sure they were legally suppose to be able to request that information). All I had was the standard release form one of my doctors had filled out for the Worker's Compensation Court. Well, after faxing that information to them, two weeks went by and I had not heard anything else from them. Of course I new the words "health problems" and "worker's compensation" is an automatic red flag to most employers, even though they are not suppose to Discriminate. I was a little upset about them not even bothering to at least call me and tell me they had decided to revoke their job offer to me. In my letter to them, I told them that My Honesty obviously was not "the best policy". Of course I immediately received a letter from them stating that "I had mis-understood our phone conversation and that I was only one of the finalist they had been considering." No other explanation as to why they decided they didn't want me in the office on "monday" was explained. These two instances just reinforced what I already knew, "It was going to be next to impossible to find employment due to my health and having received Worker's Compensation. In March I went to the Department of Rehabilitation in my city and was assigned a couenselor. They had just started a new State Placement Program through the Re-Hab department in Oklahoma. I was one of four people who went to interview at the local Department of Human Services Office (The Welfare Office). This time I was actually hired and I thought things were finally starting to get better for me. My duties included switchboard relief, filing, some computer input and relief receptionist. I started out doing pretty good but after pushing myself for a week or two the FIBRO MONSTER would take over my body and I would be unable to get out of bed for a day or so. As soon as I realized that I would be unable to continue in a 40 hour per week position I requested the opportunity to work 4 or 5 hours day to see if that would be easier for me. The County Director told me the position was to be a FULL TIME position and they would not be able to reduce my hours. This didn't make alot of sense to me, especially since I was able to get my assigned duties done before my lunch break which was at 12:00 pm. and I would spend the afternoons going around asking everyone if they had something I could do, even though I was totally exhausted by this time. I'm not the kind of person who is very good at spreading paperwork all over my desk to make myself "look busy". So that attempt at employment lasted from March 28th until June 1, 2001. So now here I am once again without any income at all. I had my final court hearing for Worker's Compensation on June 13, 2001 but as of this date I have not received any Court Order from the judge. I will once again try and get back on food stamps. I am also waiting on a hearing date for Social Security Disabiity to be set, which can sometimes take up to 2 years, depending on the judge and his docket. I applied for and received a "moratorium" on my house payments which means because of my financial situation my house payments are being deferred until I have a change in income. So to sum up this whole ordeal - I'm once again at the end of my rope and the depression is deeper than it ever has been before. I try hard to keep a positive attitude but all of you who have FMS I know understand exactly how I'm feeling. Until I can get back on the internet I will not be able to receive or send e-mails but if you would like to send any comments or have any helpful suggestions you can do so through my brother's e-mail address at

tcavanas@home.com. As soon as I am able to get back on the net I plan to start a page on how I have accumulated and compiled a notebook full of information which I will take with me to my Social Security Disability Hearing. I will be representing myself and have found some very helpful on things to compile and have ready to present to the SSD Judge for additional evidence affecting my situation. ONE OF THE MOST IMPORTANT THINGS I LEARNED WAS THAT I SHOULD HAVE FILED FOR THE SSD AS SOON AS I WAS UNABLE TO WORK, BECAUSE THEY ONLY PAY YOU BACK PAY ONE YEAR PRIOR TO WHEN YOU ACTUALLY MAKE YOUR FIRST APPLICATION FOR DISABILITY. MINE STARTED BACK IN 1991 AND I HAVE BEEN UNABLE TO WORK SINCE SEPTEMBER OF 1997 BUT DIDN'T FILE FOR DISABILITY UNTIL MAY OF 2000 WHICH WILL END UP COSTING ME AROUND $40,000 IN BACK PAY. SO DON'T PUT OFF APPLYING ANY LONGER. So please keep signing my guest book because I check it every chance I get and your comments are always so uplifting. Take care and hang in there everyone. DeDe

Wednesday, July 25, 2001 8:45 PM

I have finally heard from Worker's Compensation regarding the final Court Order. They will have to start my weekly checks again and continue them for the rest of my life. My attorney sent another letter telling me how well my testimony was and that it was what made the Case for me. He should have added for him as well, because he received quite a large "lump sum" payment and mine will be paid out weekly. The first 111 checks will be decreased 10% until the Insurance Company has recovered the attorney's fee. All of the checks will be decreased by .75% for a Special Occupational Health & Safety TAX. That will continue for the duration of the payments. Hearing from WC has taken so much stress from my life that I didn't realize just how much stress I was dealing with. Hopefully, the payments should resume by the end of the month. As soon as I'm feeling up to it, I'm going to start a new section regarding my experiences. I've spent a lot of time just surfing the net since I've been signed back on again. I didn't realize how much it helped to distract my thoughts away from my pain, stress, and etc., until I had internet access again. I sign on with the intent of doing one thing, and end up side tracked to everywhere but where I first intended to go. I'm going to invest in a gizmo I've seen in a Tiger Direct Sale Book that will allow you to use the internet and still be able to accept phone calls. It's a little box that you plug into and it notifies you when you have an incoming phone call, you can then put the internet on hold and answer the call. It includes caller ID features too and the $44 seems reasonable, if it works. My grandchildren need one too because my grandson who is 13 spends alot of time on the net. That way we can be contacted in case of emergencies and etc. while we are on line. I will be slowly but surely making changes to my Web Site periodically. I'm hoping that I will be able to help others in my same situation deal with Worker's Compensation and Social Security Disability. So please keep checking back and pass my Web Site on to anyone you know that may be able to benefit from it.

Saturday, August 4, 2001

My good news was short lived! Another letter from my attorney and another Court Order. The insurance company filed an appeal to the Judge's decision regarding TOTAL PERMANANT DISAILITY. This means the case will go back to court. Both attorneys will present their case before a panel of 3 Judges. There will be no additional evidence presented and I will not be able to testify. I knew this appeal was a possibility and I guess if I were the insurance company I would appeal as well. I've still got Faith the Court will rule in my favor. What the insurance company is wanting to happen is that rather than Total permanant disibility the Court will rule in favor of Partial permanant disibility which would mean compensation would be for a certain number of weeks rather than life time. This could take another 3 to 4 months for it to ever get into the court room and then another couple of months for the final decision to be made. So now I'm back to ZERO income. It's pretty sad that a person works hard all their life towards retirement and pays their taxes like they are suppose to, but when it comes down to collecting what is their's that same system makes it almost impossible for you to do so. So many people give up, which is what they are hoping you will do, but not this lady. I've come to far to give up now.

August 17, 2001

I HAVE A CONFESSION - The photo of myself on the Home page was taken in November of 1993. It was taken around the time I first found out that I have FMS. Needless to say today I no longer look like that person. Someday, I will get brave enough to have a recent photo taken of me and post it as the POST-FIBRO picture.

I talked to my attorney the other day and he said the appeal may not be set down on the docket until sometime in October. He also gave me more "bad" news. Depending on what 3 Judges are assigned to my case Judge Conyers ruling could be overturned. Even if they agree with her ruling there is yet one more appeal the insurance company can make. To sum it all up it could take as long as 8 months to a year for anything to be decided. I know I can get back on food stamps but there are no monies available

for anyone without children in the home. I'm hoping the moratorium on my home will be extended which will mean I will at least have a roof over my head. The rest I'm leaving up to GOD because he has always found a way to help me get through the tough times. I'm still waiting on a court date to be set for Social Security Disability, maybe I will have better luck with them.

Being able to keep my journal helps me vent and get things off of my chest without subjecting family to having to listen to me. Most all of the friends I had prior to this illness never get in touch anymore. A couple of years ago I was in relationship which lasted almost 3 years but he also finally decided he couldn't cope with my health and emotional problems. I don't blame him at all, most of the time I'm not very good company to anyone, including myself. Tomorrow will surely be a better day.

September 1, 2001

I finally got a letter from my attorney and a court date has been set for the appeal by the Insurance Company. It has been set for September 28, 2001. I'm keeping my fingers crossed that this panel of 3 Judges will agree with the original Judge's decision and I will finally have an income. I still haven't heard a word from Social Security Disability. There is one more appeal process in the Worker's Compensation Case the Insurance Company can file, and I'm sure they will follow it out as well, if the Judges rule in my favor again. I'm almost at the point where I am tired of trying to fight the system and have to keep reminding myself that I've made it this long, I can surely hold out a few more months. The daily outbreak of Giant Hives has started again, and I'm sure it is due to stress. If all of this hasn't been enough, I've had a fever for 9 days. For two days it was 104 to 104.6 and I've never run a fever that high. I have no idea what it is from and keep hoping that it will go away. It has been staying around 100 to 100.6 for the past few days. I can take tylenol and it will go away for a short period of time. I've put off going to the doctor for the obvious reasons, no money, no income etc., but if it continues into next week I'm afraid I'm going to be forced to seek a doctor who will be willing to allow me to pay the fees out. There are very few doctors anymore that will even take you as a patient if you have no insurance, much less allow you to pay the charges out monthly. Since the fever started, I've really felt horrible and have had no appetite at all so the only good thing that has come out of this is that I've lost around 8 pounds these past 9 days. I know that is not the way to lose weight but it still makes me feel a tiny bit better about myself to see the numbers on the scales go down. Keeping them down will be a whole new battle. I've lost about 25 pounds in the past couple of months, without trying to, which really concerns me some because I know there is a medical reason for the weight loss. I just don't know if I can handle anything else right now, physically or mentally.

September 28, 2001

FINALLY!!! I didn't think I would ever be able to access these pages again. There has been so much happen since I last posted, of which the whole world is aware of, so I see no need to comment further, other than I pray that our world as we know it today will be preserved with as few more casualties as possible.

I am going to have to delete all but 3 pages of my web site in order to still have access to it. I'm hoping in doing this that I will still be able to post. Take care all And GOD BLESS AMERICA.

October 2, 2001

Well, it looks like I survived not being able to access my web site. I had to cut out a lot of pages that I had really enjoyed working on, but there is a 3 page limit in order for this site to be able to be maintained free. I felt my Journal and my Tips pages were the most important to keep on line. The appeal for the Worker's Compensation case was held this past friday, the 28th of September. I finaly got notification that the hearing for my Social Security case is set for October the 11th., so I have been busy trying to get all of my paperwork together for my testimony. Since the tragedy in New York happened my depression has deepened and I haven't been able to sleep well at all. My doctor gave me a prescription for Ambien, which I only take on the nights that I'm not able to get any sleep at all. It works ok for a short period and then I wake up, sometimes around 2:00 or 4:00 AM. All of the mediciations that I am taking at this time include:

synthroid, procardia, serozone, benedryll (for hives), xxanax, lortab, ambien, prevacid, buspar, premarin, magnesium, and multiple vitamins.

November 25, 2001

I haven't posted in awhile because of my present state of mind. On November 19, 2001 the Social Security Judge that was assigned to my case made his decision and denied SSD. In his statement he basically called me and my physciatrist liars. He said that my statements during the hearing were not credibal to the extent that I had described them. My doctor had written a letter stating my present condition but did not submit a detailed report. The Judge said that his statement was not credible because he felt he was doing it as a favor to me. In the Judge's statement he commented that because I could drive my car, fix my own meals, and do some housework that I should be able to work. What I wasn't able to get across to him is yes, I can drive my car, fix my own meals & do housework like dusting & etc, BUT I end up having panic attacks when I drive because it makes me so nervous. I don's fix normal meals for myself, I purchase things that can be put into the microwave and heated up. And I very seldom do any housework because it causes so much pain. I can't vacumn the floors because it hurts to push the vacumn, so I wait until some of my family come to my home and ask them to do it for me. It hurst to even load the dishes into the dishwater. I know now that if I had hired an attorney that I would have been able to get these things across to the Judge but I was nervouse and could tell by the way he would not neve look up from the desk at me that he wasn't hearing half of what I was saying. I told him in my testimony that my grandson did things like the vacuming and mowing my yard for me. He also had an occupational therapist there who stated there were three types of jobs that I should be able to hold down which were: a bagger, a cleaner, and an assembler. I may not be all that smart but all three of those jobs would entail repetitive motion which is what caused this entire situation to start in the first place. I know of many people who have received and are probably still receiving Social Security Disability checks because they are addicted to drugs or alchohol. These people made those choices to do the things that caused their addictions. Someone like myself who would much rather be working and making 2 and 1/2 times the amount of money that Social Security would be paying me for disability is afflicted with a condition that is beyond their control and we don't qualify for Social Security benefits. Fibromyalgia is a mystery disease and not given credibility because their are no medical or lab work tests that say, "yes, this person has fibromyalgia. We suffer from continious pain, yet from physical apearances there is no obvious deformity or etc. so everyone's opintion who don't understand what fibromyalgia really is look at you and say, "she looks normal, so she must not have anything wrong with

them. I don't understand how many Doctors and most all Judges ( who have no medical training) can look at someone and make a decision as to if or how much pain a person is suffering from. I had taken a report from another occupational therapist that had seen me earlier this year and the judge gave that report no consideration even though she said that because of my mental status it would be difficult for me to work. I am at the point where I don't care what happens to me anymore. I've always tried to be honest about my situation and my condition and am still not believed. No wonder so many dishonest people are receiving benefits, which of course makes it hard for those people who truly need them are unable to obtain benefits. It's hard to believe in a system that treats people so unfairly. At this point in my life, I have no life. I have no outside activities, no friends, and no desire left for anything. When you are in constant pain and then have others not believe you when you are an honest person it is time to just give up on anything meaningful that is left in my life. I cannot stand the thought of living out the rest of my life in this kind of pain, being alone, and not being believed. This is not a life this is just existing. It's time to give up and pray for God to take me out of this world of constant pain.. I don't have the strength or the desire to fight anymore. I think that is what the Judicial system tries to do, which is break you down so that you quit fighting for what you worked so hard for and paid your taxes in order to get back what was originally yours in the first place, when you need disability assistance. I personally have known a person who died because of this very reason. He had been in a motorcycle accident which left his face horribly disfigured and left him with brain damage and seizures. Because of his disfigurement and his medical condition he applied for and was turned down for SSD. He was in the process of filing appeals and etc. and DIED ALONE DURING A SEIZURE. My nerve damage in both hands, arms, elbows and the fibomyalgia will not kill me but knowing that the rest of my life will be that of constant pain makes me want to die. Surely God would understand if I take my own life and not condem me to hell. My life at this point is a life hell on earth so what do I have to lose at this point?

January 8, 2002

Tomorrow I finally have an appointment with the Court Appointed doctor who is treating my fibromyalgia. I wish that I could have chosen a doctor myself because this doctor and I do not see eye to eye. I basically had to beg him for pain medication and finally told him "If he wasn't going to treat my symptoms that I was wasting my time as well as his. He fianally gave in and gave me a script for Lortab. It is not working for me now unless I take 2 pills at a time. I am going to discuss a pain medication that I heard about that is time released through a patch that you wear, or something stronger. I know that he will not want to increase the strength of pain medication for me but I've got to do something because the pain often gets unbearable. The drive to his office is a three hour drive just to get there and then of course another three hours to get back home. The drive itself is SO HARD on me. I always end up in bed for a couple of days after a trip to see him. There is no one who is able to make the drive with me so I am forced to go alone. Driving often causes panic attacks and the pain really increases and I get so tired. I always get lost trying to find his office and I've been going there for 2 or 3 years now. I've noticed that my memory and concentration levels have really decreased. I can't even carry on a decent conversation with anyone because I forget in the middle of sentence what I'm trying to say. It is so embarassing, especially when talking to people who don't understand what I am going through. My own daughter often gets upset because I get confused when I'm trying to talk to her. That is why it is easier to just hibernate her in my home where I feel safe.

Monday March 11, 2002

Well, my appt. with Dr. Eugene Arthur, at the McBride Bone & Joint Clinic in Oklahoma City did not go well at all. I discussed getting an increase in the numof pain pills that I needed. I told him that I needed 2 pills per day rather than 1 which he has been prescribing for some. Even though there are many days that I need more than 2 pills per day but have to endure the pain because of the limit I am allowed. When I left the doctor's office I was led to believe he was prescribing 2 pills per day.That is what he told me he was doing and the prescription said dispense qty. 60 to be taken 2 times per day. BUT, in very small letters at the bottom he had written MAXIMUM OF 15 PER MONTH. I took it to my pharmacy and she didn't ly understand the prescription but because it did say dispense qty. 60 she said that she didi not have a problem filling it for that amount but she would have to call the doctor and clear up what he had written.His nurse called her back and told her that he did not want me to have but 15 per month. She called me back and told me she did not understand his reasoning because if he only wanted me to 15 per month he should have written the prescription to dispense 15 per month. She told me that the 60 she had despensed would have to last me for 4 months. I've always felt like this doctor was having a melt down and is a quack and after this I am sure of it. I am in the process of trying to get the Court (WC) to allow me to see a different doctor. Now my pain of course is almost unbearable and the stress is HORRIBLE. To make matters worse, I was contacted last saturday morning that my "shrink" passed away of a massive heart attack. I had a scheduled appt. with him for the following Tuesday. His office advised me to contact my family doctor for my presriptions. Since I have no insurance and no extra money for the cost of the much needed drugs I'm up the creek without a paddle. This has all been more than I can take at this time and I have no idea what I am going to do. I know that you are not suppose to just quit taking antidepressants but should gradually taper them off. I have some medications that I have taken in the past but because theyot do well for me I was given a different type. I have some of these meds left so I am trying to take them for as long as they last. I have been forced to self medicate and my body is not reacting well at all. Thoughts of suicide have returned and I absolutely feel I have lost control of my life.

I have contacted my attorney to tell him of these circumstances and he told me e has no idea what the Judge will rule and it could take weeks or months to get an answer. NEEDLES TO SAY I AM DESPERATE AND FEELING LIKE I HAVE BEEN CAST AWAY AND NO ONE CARES.

Friday, April 4, 2002

After a lot of soul searching, I have decided not to bother my family with all of my problems and try to do all of my "venting" here. I realized all that I am doing by discussing my situation with them is "bringing them down" and I wish this feeling on no one. I guess that I never realized how much I talk to my family about MY PROBLEMS. I received an e-mail from one of my brothers with some information in it that had been passed to him by one of his friends who is a psychologist. To sum the whole message up it basically said "GET OVER IT". He of course stated at the beginning of the message that it wasn't directed specifically to me, BUT this is the second time that he has sent me the message. I may be over reacting due to my current situation, but he has basically said the same thing to me in different words at different times. What he doesn't seem to understand is that I desparetly needed someone to share my problems with and thought that I could count on All of my family. They really all try to undersand but when I am thinking rationally, I realize there is no way they can understand unless they were inside my body. I truly don't wish this on anyone and talking about it so much to them often seemed to help me, but I guess I was being selfish and not taking their feelings into consideration. I have no right to pull ANYONE down into the absolute HELL that I am experiencing. I know they all love me, but that still doesn't make it right for me to subject them to the pain and agony that has overtaken my whole life. Hopefully, some day, I will be able to deal with all of this with a more positive outlook. I have been living this unrelenting condition for almost 11 years and at this time it seems to have swallowed up the person that I use to be and replaced me with someone who is only existing and doesn't remember what it feels like to be NORMAL.

May 4, 2002

Today is a good day for me. I have spent the last week with my sister and have remembered how much being around people help, especially family. I am able to pull myself up out of the "pitty party" I seem to get in when I am home alone. We don't live close enough to be able to visit like I would like. I came for a visit to help her with our Mom who is almost 85 years old. I haven't been coming to town like I should because I usually don't feel like the drive, but once I am here, I seem to do better than when I am home. I now realize that being around people and having a PURPOSE is VERY IMPORTANT!!! I will try to come back a lot more often.

I have received some good news regarding my Social Security Claim. I had filed for the appeal to the hearing and the appeals council has sent it back for me to go before the SSD Judge again. I hired an attorney from Ada, OK and feel very confident that I will win my case this time. I had also started the whole process all over again because the deadline for me to be abe to get anything done is in December of this year.

March 13, 2003

I can't believe it has been so long since I have Journaled here, actually, I guess I have had so many ups and downs that I had forgotten about my site and didn't think anyone ever actually read it, until I saw the hits. When I had the Guests page it always helped to see comments that people were leaving and always words of encouragement. There's been so much that has happened since I was last here but the most important of all was the news I got today. I finally WON AND AM NOW RECEIVING SOCIAL SECURITY DISABILITY. The news I found out today was regarding my first application which I finally won. I had also filed another application in November of 2001 which was approved on the first application. It was strange that my second application was approved right away but I'm thankful it was and now that the first application has also been approved makes it even better. SO DON'T GIVE UP PEOPLE!!! With prayer, anything can happen. Hoping to hear from you guys. DeDe

April 14, 2003

I have such good news. I have found a product that is working so well for me that I feel like God has given me a miracle. This coming wednesday will be 3 weeks that I have been taking it. The wonderful news is that it is a whole food product that is full of essential vitamins minerals amino acids and enzymes that come from the aloe vera plant, sea vegatables, Pau D'Arco Extract and Cranberry concentrate. My energy level has done a 360. I have told my family that if I were to drop dead tomorrow from a heart attack they can be assured that I died happy and for the first time in over 15 years remember and am feeling what normal feels like. I still experience some pain but heck healthy people who move muscles they haven't used in years and years feel pain. I don't normally try products but I know someone personally who is taking it and she has had such good luck with it that I felt comfortable trying it. It is truly amazing. I wish I were Rich financially because I would purchase some for everyone that I know who is in bad health just so they can hopefully experience what I have. I gave some to my brother who has Lupus and is in remission from Hepatitis and he has also had good results. I honestly felt a difference on the 3rd day.

I've also just found out that I have a small tumor growing on my gums and of course am worried about it but not even that has been able to bring me down because I know God will take care of me and I'm also not going to let feeling normal be minimized, it's been too long since I have experienced these feelings.