(Updated 5/09/09)

My Fibro Blog

Welcome to my story!
I was diagnosed in November, 2002; but after investigating this strange syndrome, I've found that this whole thing started long before that...



1970's

In the 70's I went through quite a lot in my life, high school, moving from Wiscinsin to Tennessee and back to Wisconsin, and then getting married in 79. During this time I had problems with headaches, depression and mood swings, as well as attenpted suicide, There were so many other things going on during those years and the years before that, but that led up to the beginning of this.

1980's

This time period kept me very busy, with 3 children of my own, and two step children; ending the decade with a divorce and moving on to single parenting. The depression got much worse, the headaches increased, and I started developing a heart problem. My back was having problems, and It began my life of prescription drugs. I was put on Prozac for depression, since they couldn't find anything wrong with my heart, and diagnosed me with severe depression along with panic attacks/anxiety. I also started to have severe bouts of irritable bowel syndrome around the latter 80's.

1990's

Early in the 90's the headaches turned into full blown migraines, lasting for up to three days, with all the joys of a migraine; vomiting, sensitivity to light/noise, etc. With 3 children that was not fun! The doctor started me on Cafrecot (which made me more nauseated). Then progressed to other drugs after the cafrecot wasn't working. My back got worse, and started to go out so bad that I would end up flat on my back unable to move for a week at a time after a fall at work. I remarried in 94, and had a terrible scare in 96 when I had a gallblader problem along with a stone that got stuck in some tube that that blocked my liver function. While I was being passed from doctor to doctor via my HMO, I developed jaundice, and eventually got to the point where I went to bed and waited to die. I just couldn't take the pain. My friend called the doctor and demanded that he admit me right away, and I was admitted that night, and had two different procedure/surgeries done to repair the problems and rem,ove the gallbladder; but it was very scary. I was so dehydrated that they couldn't find a vein to put in an IV when I got there. I can't even remember parts of that. Things were better after that, and we moved to Wisconsin in 97; the migraines increased terribly, and my back got worse. Fatigue started to set in easily, which I blamed on not being used to stairs. No matter what I did to try to get better or more fit, things just kept getting worse, the dizziness, the nausea when bending over, fogginess, fatigue. I started having to take naps after work everyday at 3pm. I was in a very high stress job which I handled very well at first, but by 2000 I was going through my second divorce and my job performance was suffering.

2001

I tried to go part time at work, but that was just not working out. I did everything I could to make that work, but it just wsn't happening. I was too proud to just say I was having problems with my health; Now I wish I had, because I could have done something with short term disability or something in that area; but I was so exhausted and confused I had no idea which end was up half the time. I wasn't sleeping, choking all night, sobbing in the morning when the alarm went off, having 1-2 migraines a week, back problems, leg problems, fogginess and forgetfulness, emotional problems, extreme depression and suicidal thoughts, and I just couldn't hand on to my thoughts anymore. I finally put in my three months notice. I did my best to train someone about all the things I did, and had problems remembering how I had even done them. During this time I also met my current husband. We planned to get married shortly after my last week of working, thinking we were going to be fine. The first few months we did okay, we had some savings, and I was making some money doing contracting work.

2002

In spring of this year we started to run out of options as my health got worse. I started to panic, and my doctor started to get very frustrated with my lack of definable problems. By this time I was on about 5 different medications to control my blood pressure and headaches. She suggested that I may have Fibromyalgia, and referred me to a specialist to see what may be going on with me. I looked into what Fibromyalgia was, and it wasn't a good sign for me; almost everything I was suffering from was part of this weird problem all the way back to the 70's! I heard about SSDI and that it was available for people with disabilities. I had worked for almost 25 years at this point, so I went to SSI and applied. I was then told it would take 4-6 months to hear; I was devistated. That meant I wouldn't hear til Christmas! I asked the woman what I was supposed to do until then, and she said to ask relatives and friends for help. I told her she must not know my relatives! I had no resources at all, anywhere. I sat in her cubicle and cried for a bit while I filled out the remainder of the paper mound, and left in a puddle. We did what we could, sold things on Ebay, eeked out every month with my husband working as much as he could, while I accumulated a free lawyer, and then doctor after doctor after doctor after doctor, each one with their own little white pad. I hated seeing thqat little white pad being whipped out!!!

December came, and I finally got that wonderful letter from SSI-- wonderful until I opened it, which said I was denied. I wailed like I had just lost a child, I didn't know what to do. I was devastated. I had seen the worst doctors there were at the clinic I went to, and been so delicate that I never spoke up and just took the abuse they doled out, and their reports were what went to SSDI. Of course I appealed, which only means a new person looks at the same old paperwork and renders the same verdict, just to waste more time. You're practically guaranteed a denial at that point, which I expected but it was still very disappointing.

2003

So, here we are, 2003. Appealed for a hearing, which we expect sometime in mid 2004. Became fairly bedridden due to my back and fatigue. My back has a severely ruptured lower disk, other ruptures above, and arthritis/degenerative disc disorder. In October 2002 had pneumonia, and after that started to have asthma attacks, which I have almost every day now. Migraines have increased to 3-4 a week, but are controlled at the time with two medications; preventative with three pills. All totalled I have 16 prescriptions in all, which cost approx. $300 a month in co-pays alone. This is currently more than a weeks pay. Still no help, and we are about to miss our second car payment, and have no idea where our current house payment is coming from. Every day is terrifying. What's more terrifying is there are thousands of people just like me, stuck in the same position, many with small children; many with no resources, family etc.

2004

I was recently made aware that I haven't made an entry here for some time...Wow, how the time gets away!!
After months of waiting, and shuffling off to umpteen doctors appointments, I finally got my hearing in April. I was ready with my basket of meds, my files, my medical diaries, etc. My sister and husband helped me get there as well, and the attorney that helped me through the Clouds Community was there also.

I was also ready for who knows how long I would be there, so I had a pillow for my back and my wheelchair in case I needed it.

We were called in, and I was asked two questions; he looked at me, the meds I had, the pain in my face, and that was all he had to ask me. He was furious that it had gotten to this level. It was positively ended there at that point, and I was elated and upset at the same time.

In August I received my backpay of $26,000 for the past years that I should have been receiving it. I was able to catch up my house payments, pay off my car, my husband got a small used truck, paid off bills, and had money in savings for the first time ever.

That winter, my youngest daughter and I were able to drive to Phoenix and be there for the birth of my first grandchild, my namesake Vanessa Rose! That was one of the most difficult trips of my life, driving straight through withought stopping like we used to do when the girls were younger... .

2005

Now that the financial hurdle was overcome, the next one was the physical. Trying to find ways to improve my pain levels. One of the biggest ways was to lose weight, but of course there were many drawbacks to all the ways traditional weightloss was done, that I couldn't do. Difficulty with my back, problems with my blood pressure and vertigo, etc. I approached the surgical department finally about gastric bypass after agonizing over it, the fears of not being able to eat, the loose skin, etc.

There are huge parameters you have to go through to get to the point of surgery; physical, psychological, not to mention financial. I started attending the seminars and the behavior and nutrition classes required, and applied through the state to get qualified for the surgery due to the physical disability problems I have.

AMAZINGLY, I was approved!! I still am amazed, and to this day I have the acceptance letter up on the fridge :) . They said that once you were accepted it could take up to 9 months to get in, but I think I was accepted in June (my birthday) and scheduled for October. This gives you plenty of time to really adjust to the new way of thinking, because it is FOREVER!!! If there is anything you aren't following when the surgery is coming up you are passed over.

So, the big day comes, and it goes great. I have a wonderful experience with it, and you have to learn a lot, but what a change. By Christmas I lost 50 lbs already! .

2006

My lower back is having a hard time, and the doctors try to fix it with surgeries, but after two of them they have given up, and said that I will have to just live with the pain and manage it with meds. As if I'm not on enough meds already!!

The fibromyalgia flareups have been fairly linked to the weather, which is good in one regard, but whenever the weather shifts I feel like I have the flu, or a migraine, or trouble walking..
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Driving to Phoenix again in the spring for my daughters wedding was difficult; I had lost about 75 lbs at this point, but the fibro was acting up something crazy as my body was re-adjusting to the new way of life I was leading..
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I also over-did myself quite a bit in trying to get things done for the wedding, and it ended up really bad, stressing myself out so much I had a flair up that lasted for weeks..
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I also was out of sorts with my daughter until November. It was very unpleasant, and my husband was beside himself with me and my depression and flair ups over the whole situation. .

2007

In 2007 I was introduced to a new pain doctor, who was open to new ideas in managing pain. I know I don't want to take a huge amount of medications my whole life, but I don't want to be in anymore pain than I need to be in. An average day for me is about a 5 or 6 on the average pain scale, and I'm okay with that now; I've resolved myself to that. But now we have a new person on the scene who wants to start trying new things and changing things after I have spent so many years trying to get to the place where I can just be off the couch and get around... I'm afraid..
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2008

At this point my doctor has been doing nore to do injections in my back to alleviate the pain in areas of my back that are having specific problems. This also seems to help my fibro since it takes the stress off of me, the pain causes stress, and if I'm feeling better then the stress is less. .

2009

Finally at the beginning of the year we decided to compromise on the medications, and lower the oxy if we increased the hydrocodone so I could manage it better myself. My doctor has it set in her head that the oxy is aggrivating my fibro, and wants me to cut down on it, so fine, as long as I have something to balance it with so I can be somewhat pain free. .

5/2/09

I returned from Phoenix with a renewed energy, and feelings of hope for a new way of life. A friend of mine's mother died while I was there and I helped clean out the apartment(s), and I vowed to my children that I would never leave a mess like that for them in that way. My new energy level has allowed me to dig in and find a new way of life, enjoying a new minimalistic viewpoint vs. the hoarding I had been living with before.

While I was gone my husband was behaving very strange, and I wanted to really show him the new me. He has stayed by my side through all my illness over the past years, and now that I have found a new energy and my body has finally found itself, I wanted to prove that my new way of approaching living is real and not just a short lived thing.

He has told me that he has very little trust in me at this point, he isn't sure I will keep up my new behavior. ????? I don't want to live wondering if I have a down day that I will suddenly lose his affection or whatever. He also spent alot of time with a female classmate while I was away, doing even weird things like driving 3 hours to go dancing which he doesnt do! He said he liked spending time with her because he didn't feel like he had to 'take care' of her. ??? Of course he didn't! Her boyfriend takes care of her! He has a part time 10 hour a week job that barely helps pay the minimal bills that still have no contrubutuion to the household. That is the real probem in my opinion.

The other night he said if it wasn't for the house anchor we would be living in separate apartments. Really? Thanks for the info!!

So, I am filing separation papers. I can't do the divorce thing because of the house . He asked when I wanted him to leave, I said tonight would work, but anytime after that would be good. I was so tired of feeling inadequate and unloved, but I an so upset about him not loving me anymore after all we have been through.

I have to fine a way to get over that part of it, that is the biggest hurdle. Any advice?? .

5/9/09

"When disability comes in the door, love goes out the window." --unknown

My best advice to anyone reading this is: Don't relax and feel safe thinking you have Social Security Disability to fall back on if something happens to you. It's horrifically traumatic, and a NIGHTMARE to experience, especially when you are ill and have a hard enough time thinking, walking, and sitting up. There is no compassion, there is no help. YOU ARE ON YOUR OWN.