Linda

My Story Me and IC

I love doing web design and love making graphics. I spend a lot of time doing research about IC. I just want to learn to understand its part in my life and except it. Here is My story from the time I found out I have IC till now. My story is long, but first let me introduce myself. My name is Linda I'm 44 yrs old, Married to a wonderful man now of 4 yrs together going on 7. Two wonderful children, son 27, daughter 18 and an adorable stepson who is now 7. My Daughter graduates this year and I recently was told my son will be deployed to Iraq anytime after December. Have two Jack Russell’s, mother (Michelle) and daughter (Abby)( They are My stress relievers, My babies) a cat my daughter brought home from work one night was a kitten that almost died but we saved it, and four fish (convicts so fun to watch and breed ). I live in the beautiful hills of Tennessee. I’ve had A lot of bladder an Kidney Infections from the time I was a young child till I found out I have this disease.

In 2002 of July I was working in my garden in the Netherlands where I lived for three yrs and to which is where my husband is from when I felt out of the blue the most unbearable pain you can imagine. I truly thought that I was having a gall bladder attach or passing a kidney stone. I barely made it into my house and called a friend who took me to the hospital. But guess what, no gallstones, no kidney stones, nothing could be found. I spent many evenings in the emergency room because I was in so much pain, and doctor after doctor appointments. I had seen the best of the best so I thought and yet nothing could be found wrong with me. After about 6 mths I had even begin to convince myself this is all in my head, but how could I create so much pain?

That’s when my husband took matter in to his on hands and got on the Internet and started looking up abdominal pain. We both spent the better part of the night reading and reading and we kept coming up with things about IC and how all the symptoms I was having was just like all of the stories we were reading. The next morning my husband called my urologist and demanded to see him right away. That afternoon we were able to go to his office and talked to him about what we read, it was then he agreed to do a biopsy and from there I found out I had IC, ulcers in my bladder. I was so scared I was convinced I had bladder cancer, by then and would surely die. But to be told finally after every test U can imagine that I had this disease, was a relief in itself, even though 4 yrs now down the road, I have been through more pain than I can ever imagine, burning 24/7 spasms 24/7 going to pee every 30 mints to and hr, up and down all night. No sleep working 10hr shifts for a few yrs, all kinds of different meds to treat my symptoms to home installations now given to me by my husband, surgeries every 3 or 4 months for bladder distention over 18 now in the last 4 yrs. Pain, pain, pain and still pain, I’m now more than sure I'm hooked on pain meds. But I still try not to let them control me and I take the dosage prescribed only.

But then a miracle happened, no I'm not cured, and yes I still have pain everyday, but I was introduced to Dr Doggweiler, she was a new doctor in Knoxville Tennessee who specialized more with IC then all the others I have seen and tries different things with her patients. I have been seeing her now for almost 6 months and she has did more for me than all the doctors I have seen put together since I first got sick to try to help and make me comfortable..

I now have had almost 16 therapy visits for severe pelvic pain. And the lady I see is wonderful at this clinic in Knoxville, Tennessee she has gone to school for 8 yrs to specialize in pelvic floor muscle pain and sees many IC patients. She said I was a mess and that If I didn’t leave my job my sessions with her would be worthless and she was right, for 9 visits I continued working but when she would see me she said for every step forward I have taken you, working has taken you back two. So now here we are through with my visits, now not working for more than 2 and half months, finally listened and with her encouragement and Dr Doggweilers I took a long medical leave for at least a yrs or two. I recently had the second phase of Inter Stem surgery. The trail period went ok I had not as much burning and not as much spasms, but still there was pain. I still wake up with a bad flare-ups at least 4 or 5 a week, lasting the whole day and night.

Therapy was good for me. Patti my therapist does things to my abdominal area and can help bring my pain down a lot. I miss her and can’t wait to go to her again in the future. I am now able to cry when before I held in so much. I’m severely depressed off and on and every bone and joint in my body hurts most all the time. My eyes or getting bad, I have IBS. I either can't sleep or do nothing but lay in bed on my laptop like so many I have read do and take nothing but all the meds I'm on and bladder installations and try not to get more and more depressed. My husband did tell my doctor today that I need help and needed it bad. She agreed and this will take place soon. I must agree, as I couldn’t have a more supportive family, my husband god love his heart still stands behind me and takes care of me as you would a sick child. I and trying to get disability as we speak but we all know how discouraging that can be and I'm sure I will be turned down once again, as I was two yrs and half ago but have a little hope as I now have a wonderful doctor backing it and doing everything in her power to help me. I may be depressed but I don’t want to give up, my god I’m only 44. I just want to be me again as I was 4 and half yrs ago. I love working and was very active. I miss those days. I’m tired of being in pain, I’m tired of taking meds. I’m under so much stress; I’m so forgetful now. Gezz I’m a mess LOL.

I love to have any of you share your stories with me if you have them in another place besides the few I have read here. It feels good to know I’m not the only one as I am. I’m sorry this is so long but Trust me this is very, very short version of what I have been through.

Hugs to you all Linda

Update: February 2007: Inter stem surgery is doing me some good now since I had it. I am now at around 60/40 percent of pain each day and level at around a 6 or 7. That's a big change as to what I was going through 9 or 10 100% pain each day 24/7
UPDATE January 28,2008 I'm doing really good right now, Pain still there alot but I've learnt to just live with it and be glad to be alive !!

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