I'm obsessive. An addict, even. It's in my genes. Books, true crime documentaries, sweaters, bunnies and puppies, coffee... My caffeinated kryptonite.
I pride myself on being able to let go of things that no longer serve a purpose to me or hinder my growth-- relationships, jobs, mentalities... But I can't give up my coffee. When the photo on the right was taken I was already in full-fledged IC flares and joking, "The first step in healing is admitting you have a problem. I have a problem." But there was and is nothing humorous about the text I sent my fiancé. I did have a problem. Bigger than my caffeine addiction.
Brace yourself for TMI on UTI! & my first time discussing this with people "outside my circle"
**Feel free to skip the midsection to avoid the awkwardness and jump to the bottom for the basic premise of this post.**
Near the summer of 2016 (right around my sister's college graduation) I got what I thought was the world's worst UTI. Every 15 minutes I was getting up and apologizing to my fiancé for disturbing him while we watched a movie on TV. The next morning he text me to ask if I needed anything before he came over. "Some cranberry juice and plain yogurt?" I'd conquer this UTI! While I googled other home remedies from my couch I wondered if I would feel well enough to go into work the next day. I was working a job coaching, teaching, and care-giving for adults with intellectual disabilities and they needed constant supervision. My bathroom visits would be very limited. I remember on my lunch break that next day, giving up my home remedy plans and running across the street to the CVS and buying AZO, AZO Pumpkin, and Monistat (just in case) and feeling judged by the cashier who I saw at least twice a month while working in Kearny. I took my first pill at work that day. After what felt like weeks I felt normal again. But fast forward another month and it was back, with a vengeance! Ugh!
"Hormones suck..." I whined that a lot for a long time, until I finally was at my wits end. This was more than a monthly occurrence. By September I was having difficulty making it the 35+ minute drive home from work and switched roots and plotted out every local store that would offer me a bathroom free of charge and judgment (thank you Dunkin' for always being so supportive and available; your CEO brought in the best, I swear!). I knew I couldn't keep living like this and ignoring the symptoms that Google so lovingly told me could be 4 different types of cancer, prolapse, or diabetes.
I made a gynecological appointment first. (This is a story in it's own right for another time...) I was assured insurance would cover my tests so I had them all. I accumulated over $2000 in charges and was ultimately told I have a cyst on my left ovary that "looked benign and rendered no further service unless I experienced pain or missed cycles". O.K. I was not satisfied with this and then spent the next several months visiting PCPs and self-medicating on AZO, pumpkin extract, and marshmallow root tea. Finally, right before my 25th birthday, one doctor referred me to a urology clinic.
I recall I left work early on a Wednesday, stopped at a Dunkin' and ordered a large mocha latte, and waited alone in a waiting room for two hours before seeing the doctor who treated my grandfather years before me. As I sat on the examine table that afternoon, Dr. Katz said the words that would start a tidal wave of dread in me. "It could be an infection and we could give you antibiotics, or it could be OAB. But you aren't getting up at night, which makes me think it may be interstitial cystitis. Come back in three weeks and we'll do a urodynamics test. That'll rule out several possibilities and by then we'll have the cultures back." I admit when I left there I was both relieved to have names other than cancer on the list, but panicked because I didn't know the first thing about "interwhatever"; and all I knew about OAB is that the little bladder in the commercials was lucky he was cute because he made even me want to strangle him.
After one of the world's most bizarre and least-dignifying tests was completed on me three weeks later, Dr. Katz looked at me and said, "Judging from these results it is not OAB." GREAT! "There is a test I could perform to give a definitive answer, but I believe you have IC. Would you be willing to undergo another test? It would be scheduled a month from now; we have to do it in a hospital under anesthesia..." Now I was really panicked. I agreed though, and that night I began looking up everything I could on the diagnosis that would change my life forever.
With the diagnosis of IC I had to learn moderation, control, patience, and accepting people's help on levels so foreign to me. I was a wild card with .01% patience outside of work. I was a spicy food and caffeine fueled, lone-wolf, "lets drive to California"-type of girl. With interstitial cystitis, it's sometimes hard to even leave the house though. There is no "cure-all" or "cure" at all. I will live with this and its flares (think IBS, but for you bladder and not your colon) for my census average of 72.8 years of life (or longer!).
Months before the diagnosis and educating myself/making life changes, I reserved my vacation and personal days for "BBDs" (bad bladder days). I 'trial and error'-ed several pills leading up to now and fought insurance companies for coverage. Then, a couple months ago, I learned the OAB pills I took to help moderate muscle spasms were causing both respiratory and neurological side-effects and I had to stop them. With a change of job and no insurance yet, I was unable to try a different pill. I have been using diet and stress management. I'm reading blogs and forums, books and lists/pamphlets of "Cut out spicy food, vinegar-based products, processed food, sugar substitutes, chocolate, alcohol, but mostly caffeine-- soda, tea, and coffee..." I tried. (For months I suffered with extensive migraines as I went through withdrawal. I was "clean" though!)
So it may seem ironic to some that I would name my blog after my pitfall and archenemy: Coffee. Java. Joe. But truthfully, despite almost four months caffeine-free, I still turn to coffee on a cold day. A bad day. A date day. A "breakfast out" day. A "I didn't sleep enough" day. A "I can't today" day. Coffee got me through a lot in life and when I picture all the best days in my life I always had a coffee (like on the first date I had with William as we froze outside Lindt Chocolate). So if I moderate everything else, including just how much coffee (or switch to decaf) I ingest, maybe it won't be that bad. This is just the start of my journey through this and I have a long way to go; longer if I start making foods forbidden. Besides, moderation is the key to anything in life after-all. Right?
Today, I openly admitted my problem(s). I have a great support system surrounding me. I am ready. I can start my healing now...
If you or someone you know is looking for support with Interstitial Cystitis:
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