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.

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.