Those of you who read my blog regularly know that I am not shy about discussing my health problems, both mental and physical. As someone who has been plagued with mental health issues since a pretty young age, I know all the ins and outs of my mental state and how to talk about it. The past six months I’ve, unfortunately, been learning the ins and outs of my physical state, as well. Due to constant kidney/urinary infections and intense kidney pains, I’ve had more doctors’ visits that I can even remember. I’ve had various procedures done, been on at least five different antibiotics, and seen two different specialists. It’s been frustrating and expensive, to say the least.
Finally, after months of dealing with all of that, my urologist thinks they have solved The Great Kidney Mystery. They’ve diagnosed me with a disease called Interstitial Cystitis. A ton of research hasn’t been done on this condition, despite the fact that millions of (mostly) women have been diagnosed with it. The cause of IC is still unknown, but what happens is that you have irritation and chronic inflammation in the lining of your bladder. This creates different symptoms for different people, but the common symptoms include pain in your bladder/pelvic area, stomach pains, frequency to urinate, feeling like your bladder is always full, and sometimes blood. You pretty much feel like you have a UTI most of the time, even though you don’t actually have an infection. For me, this has also led to kidney pain and a few actual infections. Through all of this we have also learned that my right kidney is much smaller than my left one, which may explain the cause of frequent infections, as well.
So, what do they do to treat IC? Not a whole lot. For starters, I have to learn what foods and beverages are more likely to irritate my already irritated bladder/kidney. There’s a laundry list of things that might do this. The biggest offenders are caffeinated and acidic foods: coffee, chocolate, alcohol, fruit, spicy foods, tomatoes…pretty much everything I like. I either have to figure out which foods are “bad” for me and either avoid them completely or take anti-acid pills with them. The pills are helping a bit, so far, but it’s not a perfect system. Having a restrictive diet for any reason is majorly problematic for me, given my eating disorder. The fact that I’ve been doing so well with food the last few months makes this situation really upsetting. It’s like no matter how hard I try, I can never just be “better” for a while. I’m finally over my eating disorder relapse and enjoying food/life again and now it’s like “Oh wait, just kidding. Time to create more problems.” 😦
Other than dealing with trigger foods and whatnot, there’s physical therapy that can be done. (Honestly, I don’t even know what this is for yet. Something about relaxing the pelvic floor muscles?) There’s also medication that I could technically take for when my bladder symptoms are really bad. The problem, however, is that you can’t take them with anti-depressants. So that pretty much just means I’m screwed, because I can’t stop taking my meds.
You’d think I’d be rejoicing at finally having a diagnosis, right? If I’m being honest, I’ll admit that I’m actually pretty upset by all of this. I think deep down I was expecting/hoping them to finally figure out the problem, then fix it. Even if it had involved surgery, I was okay with it, as long as the problem went away. Instead, I’m being told that I have a chronic illness that’s likely to cause me problems for the rest of my life. Given that I’m only 30 years old, that could be a long time. It was bad enough trying to deal with my mental health issues, but now I get to deal with chronic pain on top of it. 😥
I’m trying really hard to remain positive. I’m reading up on tips and suggestions that other people with IC have shared. This hasn’t really made me feel much better though, as most of these people sound like they’re pretty miserable half the time. It doesn’t help that I already feel like my support on this is lacking. Since the disease is uncommon, I imagine that most people just won’t “get it.” I actually tried to discuss it with someone earlier this week and was met with some very unhelpful comments that actually made me feel a lot worse.
At the moment, I’m PMSing, which is a terrible enough time for me because of the fact that my depression gets way worse. It also causes my bladder/kidneys to hurt more. My brain is already having a field day with this, telling me all the reasons I should feel sorry for myself. *sigh* I’m trying really hard not to fall into that mindset and remain positive about this, but it’s tough. This is new ground for me and I honestly don’t know what to do or what to expect.
If anyone out there has any feedback or tips to share, I am always willing to listen. Tomorrow we will return to our regularly scheduled bookish discussions.