My story

I came to this website today because the last few years have been a nightmare. In 2005, I went to the hospital on a weekend believing I had a bladder infection (which is something I was "blessed" with regularly). They gave me the medication, told me to take them all, and if I still had the problem to go to my regular physician after, and he would give me a different type to try to help get rid of it. The problem continued, so I took the second set of antibiotics and they too didn't work. My doctor told me at that time that I needed to see a Urologist because there was nothing more that he could do to help. The problem got worse, and I felt like I had to go to the bathroom constantly. Sometimes I really had to, other times it was just the nagging pain that wouldn't stop. I saw a number of Urologists, each of them telling me what they thought it might be. Each of them ran numerous tests, but none came up with an answer. One told me she thought it was Interstitial Cystitis, so she gave me 2 prescriptions for medications to help "calm" my bladder, but told me that they could take up to six months to start working (they never started working). I suffered in silence for a year, trying to live a normal life, making sure that everywhere I went, there was a bathroom close by.

I continued to take those medicines, along with my epilepsy medicines, and my migraine medicines (which I needed often), but it seems like everything started crashing. I found out I had a female problem and needed to get a hysterectomy (they left my ovaries because of my epilepsy). I wasn't entirely unhappy about it because my monthly visitor often brought it's own sets of problems, and not having to worry about the feminine products was a blessing. The surgery went fine and recovery was fine.

Three months later though, I had a seizure while I was driving, even though I had been taking my medication as directed. It was a very different kind of seizure than normal to me (they call them complex-partials), as I had less of an aura this time, and it was stronger, lasted a little longer, and I ended up blacking out at the end of it (I have never done this). I wrecked my car (I was on my street heading home about at my driveway, and ended up in my neighbors dirveway instead where I damaged their rock garden, I then ran through a wire fence, and ended up in a third neighbors driveway where their pickup stopped my car. I remember only seeing the rock garden. I was terrified, and felt horrible for what had happened. It scares me still. I lost my ability to drive, all of which has had an enormous affect on my life.

Since the surgery & accident, more medical problems have arose. I ended up with major depression and hospitalized within months of both. The hospital staff helped me find a new Urologist who finally gave me a medication that helped me with my daily pain, gave me another that would help with extreme pain, and gave me diet tips to help with my bladder. Of course the new medications have their downfalls but the pain relief is a God send. I was also put on large doses of depression medications that too have their good and bad points. My seizure medication doses were upped and a new one was added so new side affects were added as well. I am still on my migraine medications too which I must use often because I seem to get them with weather changes, hormone changes, with sleep disturbances etc. I went from my normal weight of 145 (which I have been for years) to 174 within a couple of months.

Of course taking all of these medications brought their own problems too, like bowel issues, so that also brought more medications, and diet changes. My mouth is now so dry I feel like I did when I used to drink and wake up the next morning with cotton mouth. I drink nothing but water each day (at least a gallon but more like 2), and no caffeine. My skin is dry, lips and hair are dry too. I can't drink any more water without bursting. And once again, I live by the bathroom, just for a different reason.

New symptoms are now popping up almost weekly, sometimes daily. I'm now having tingling/pins and needles and now burning in my hands and feet. My bones and joints have a great deal of pain, and muscles ache sometimes to a crippling degree. I am fatigued and sleep for 12 hours a day ( I'm sleeping all night, though the sleep i'm getting is not refreshing - I feel like i'm spending the whole night dreaming). My short term memory is so bad I can't even answer my phone and feel that I can't talk to my own friends any longer because my conversations no longer make sense (I can't find the words that I'm trying to say when I want to say them. My vision is so bad, I can no longer read small print at all, and even have trouble reading larger print because my eyes get blurry. I have always had perfect vision. My eyes have become extremely sensitive to light, dust and debris, and seem to be very dry. There is always a redness to them. I now have a problem with strong chemicals or odors of any kind. I am getting more headaches and worse headaches than i've ever had in my life. My mental status has become even worse, as I am angrier and more hostile than i've ever felt. The list could go on forever.

I've been to so many doctors, have had blood test after blood test done and they can find nothing wrong with me. They send me to others and they then send me on to another and another. I feel hopeless and wish that I could find an answer to end this pain so I could have a life again. This is when living in a small town in the middle of no where is a bad decision!