Our Stories

I'm a 35 year old Female who was diagnosed with Ac about a month ago. I have had Fibro for 9 years, which was brought on my being trapped in a burning car and inhaling all the toxins from the burning and melting plastics. However, I did have troubles all my life with things like running and pain in my muscles and was told my Doctors since the age of 5 that they were "growing pains" and would stop once I hit my teens...well guess what? it didn't and hasn't.

I also have something called focal nodular hyperplasia of the liver. In laymens terms this means I have 12 tumors in my liver and the "cause" of these they think is the birth control pill. These tumors in my liver cause pain beyond anything I have ever felt and I'm not several different narotics to curb the pain. I have a pain specialist who is wonderful and helps me alot. The tumors cannot be removed because they are filled with blood and the chances of me "bleeding out" on the operating table is high and I will then expire, so I have opted not to have this risky surgery.

I have never taken medication for pain before my tumors became symptomatic 3 years ago. I lived with the pain of the fibro and dealt with it the best way I could. I have since had to stop working and occupy my time volunteering for the Canadian Liver Foundation from my home.

Before I lost my ablitity to work I was a medical professional, so being on the other side of the fence is quite hard to deal with at times.

After reading your site I was intrigued to say the least..I have found a spot where I fit, everything from remembering all the bad stuff to the emotional rollercoaster. I remember crying and crying over my math homework with my dad and thinking I was very stupid and I would never, ever become anything. Even now if my hubby and I have a disagreement I will have the feels as if my marriage is over, even if it's over the silliest of things...I can't control the way I think. However, upon learning that this is the way AC persons handle things, it's made my life alot easier and I realize why I think and do the things I do.

I did like to be cuddled as a child, but only by my grandmother..she had a very soft touch which I still crave to this very day. She would lie me on her lap and play with my hair until I fell asleep. I get my hubby to do it now.

One thing I also do is I rub cloth between my fingers to feel it glide over the tips...I'm not sure if anyone else out there does this...my hubby calls it stemming.

Being diagnosed with AC has opened up a whole new world of understand for me, know I now why I'm so forgetful and why I bob and dance. However, I tend to rock back and forth quite often when my pain gets high. The headaches, nausea, emotions, pain..it all makes sense. I also have troubles getting to sleep and staying asleep.
My pain levels are usually very high everyday, somedays I cannot walk at all, and other days I need to use a walker and on rare days I can walk like nothing is wrong and even go for a bike ride and escape the house for a few minutes.

I have been out of work now for over 3 and half years and I have applied for my disability benefits, but have heard nothing as of yet...and I applied 3 years ago. I keep writing and contact them but I'm told that they are "back up" or some other piddly excuse.
Upon finding this site, I am now questioning the birth control theory for my liver tumor and am going to start research on the connection between AC and FNH and of course the fibro.

I also want to take this time to say thanks for putting together such a great site and I will keep you informed of any finding I get.

If anyone has a similiar story to mine, please feel free to contact me at clfbrampton@hotmail.com or at middlet@rogers.com I can be reached by phone at 905 487-0751.

Thanks again, and all the very best to all,

Melody Middleton

President
Canadian Liver Foundation

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