Interstitial Cystitis… the newest diagnosis that has been added to my ever-growing list of diseases and conditions. You may have read my post, My IC Story, which was written when I was still in the diagnostic stages of this particular disease. Well, the diagnosis was formalized on Wednesday, after the cystoscopy was performed. I thought that I would be relieved to finally have a diagnosis, but instead I’m depressed over it. To have this diagnosis means that I will have a lifetime of excruciating bladder pain. There is currently no medication for this disease. There are treatments that I will be trying, but the thought of them just make me sick. 6-10 weeks of bladder instillations just does not sound like a load of fun.
I woke up this morning with one of the worst bladder flares of my life. My bladder was spasming like nobody’s business. I was screaming and crying in pain before the sun was even up. Living with this disease means that sometimes my day starts with tears and pain pills, and today that was definitely the case. I’m not fond of the pills, but when pain that severe strikes me I’ll do just about anything for the chance to make it stop. I don’t care for the stigma that goes along with being on pain medication, but I didn’t start this blog to lie about my treatments or to hide the ugly truth of my diseases.
Some days are better than others. Some days my bladder only hurts for a few minutes or maybe an hour. Some days simple stretches can ease my symptoms, but most days the pain is so bad that it hurts to walk, sit, stand or move. Some days marijuana is enough for me to tolerate the pain, while other days I require narcotic pain medication just to be able to function.
This disease is also embarrassing. Imagine being almost 40 years old and having to run back and forth to the restroom several times an hour. And by several, I mean more than 10 times an hour – every hour – that I am in a flare. I miss out on a lot of sleep running back and forth to the bathroom all night long. And the medicine for it – terrible! It turns your urine a blood orange color and stains your skin and clothing. I hate it. I hate the medicine. I hate the disease. I hate the treatments. I hate my life with this disease. It’s making me a very hateful person and that is not my nature.
Now I’m going to get real. This disease affects bedroom activities. In fact, that was the first symptom I experienced over a decade ago that sent me running to a doctor for some help. Love is not supposed to hurt, but that’s what this disease does. Dyspareunia, or pain during sexual intercourse, is one of the worst symptoms of this disease and the one that upsets me the most. Luckily, my guy could take it or leave it and never makes me feel a way about it, but there are so many women with this disease that can not say the same and that breaks my heart for them.
My autoimmune life isn’t all bad, but my good days are few and far between lately. I’ve got one good thing going for me, and that is the love and support of my husband, my best friend. He constantly shows up, does any and everything that I need him to, loves me unconditionally and expects nothing from me. He doesn’t force me to work, cook, clean, raise the kids or any of the other things that stay-at-home-moms usually have to do. He’ll go to work all day long, then come home and cook dinner and clean up. To say that I am blessed would be the understatement of the century, and if I didn’t have him by my side I would not be able to survive this autoimmune life of mine.
Stay strong autoimmune warriors and friends and family. Love and light now and always.