Chronic – I hate that word and I hate what it means. Every time I find out I have developed yet another chronic illness, it is just another slap in the face of how I’m going to have to live the rest of my life with yet even more problems. The word means being doomed to a lifetime of medications, side effects, and more chronic illnesses from taking medications to treat the current chronic illnesses. It’s a maze I can’t even fathom getting through even on a good day.
I know that I do not talk a lot about the fact that I have Interstitial Cystitis on this website, even though I was extremely sick with the illness for a few years. Again – like CFS & Fibro, I believe that I always had IC, but just not a severe form until it got really bad in 2003. I was always having bladder and urinary issues from the time I was a child up until I was diagnosed. When my body starting shutting down in 2003 was when I began having the severe symptoms that left me lying on the bed writhing in pain in the fetal position. I was barely able to walk more than a few feet because the pain & pressure were so severe in my lower abdomen and vaginal area. I was going to the bathroom up to 60 times a day due to all of the pressure as well.
I did not respond well to any of the treatments the urologist had me on and I was even catheterizing myself daily with numbing medication directly into my bladder to try and get some relief. I didn’t go into remission from the Interstitial Cystitis until I started receiving the IV therapy from the Fibromyalgia & Fatigue Centers in Philadelphia in 2005 – 2006. From that point – up until the past month, I have only had mild flares of my Interstitial Cystitis for a few days here and there, nothing too earth shattering to get upset over and nothing really life changing.
Ever since I became sick with this sinus problem the other month, I noticed that my bladder was acting up again and pretty bad, too. The doctor checked for a bladder infection but found that there was no bacteria, so it was from an IC flare. I assumed that because I was sick, I would get over it quickly and that the infection was working it’s way through my bladder, as sickness sometimes does for those of us with IC.
But the longer time goes the worse it feels the flare is getting. I am drinking water like crazy trying to keep the burning in my lower abdomen and pelvic area to a minimum but it is getting unreal. I am starting to find it difficult to walk very far because of the pressure and I fear that if I don’t get this under control somehow, someway very soon, I will be in really bad shape to where I won’t be able to walk more than a few steps at a time.
When you go through a remission for that many years, the depression sets in when the chronic illness comes back and takes over your life again. That’s why I hate the “chronic” in everything that I have – it’s like it’s always there, lurking around the corner, just waiting to jump out at me at any time, anywhere.
I have three months until we go on our cruise and I have to have myself in good shape by then. I have worked so hard over the past several months to try and get my health on track, harder than I ever have before. But that doesn’t matter to chronic illnesses like Interstitial Cystitis. They will come in and take over whenever they want, however they want at any time.
I haven’t been to a urologist for four years so if I don’t get this under control and in remission soon I will have to get back to him to get put back on Elmiron. Elmiron is a medication that I took for IC before that helps to coat the lining of the bladder wall.
I am also trying to drink at least 5 – 6 bottles of water a day and I bought some marshmallow root from the local health food store. Marshmallow root can be made into a tea and it helps to soothe the bladder and it helps with the pain and burning a lot.
I have a great deal of information on Fighting Fatigue about Interstitial Cystitis. If you or someone you know suffer from this illness, you can click the link below and it will take you to the IC category: