My life, a medical journal, of the past three years.
I've always been told that I have to be an active participate in my healthcare. That If I don't keep fighting, keep calling, keep trying when the doctors have given up on finding an answer, no one else would. Years ago, when this process started I would have never thought that I had or would ever get to the point that I would admit to say, I've given up but I think that today will go as the day that I stopped fighting.
Pain has been a daily occurence in my life. It's not a little ache or pain here or there that most people my age complain about. I wish I could have one week without pain. One day even. It first started out in my uterus and my ovaries. It felt like someone was squeezing, twisting and my body was cramping itself until there was nothing left to hurt. Eventually I took birth control, went through a laproscopic surgery to remove endometriosis.
Then it was my bladder. It was like a thousand needles pressing against my pelvis. I'd go to the bathroom and it would be fire. My entire pelvis felt sore, tender, beaten to the point of no return. I went through rescue therapy treatments, numerous medications and endured pain that is comparable to what patients with bladder cancer go through during treatment. The pain I feel with interstitialcystitus is almost daily. There were good days, no doubt about that. I adjusted my diet, reduced my acid intake, became conscious of stress triggers. I learned how to cope with that level of pain on a near daily basis because I had to.
Then it became a fight with my bowels. Anyone can tell you how uncomfortable that can be. The back pain, the abdominal pain. The medications to help with the abdominal cramping, the laxitives, the fiber, modifying my diet once again.
During all of those issues I dealt with disabling migraines. I have gone through every preventative imaginable, every immediate rescue medication until we found one that gave some kind of relief. Most of the time I would miss work, hibernate in the dark for a few days while catching up on the sleep that the mirgraine robbed me of. I went to the hospital seeking treatment, went through numerous MRI, MRA, PET and Cat scans. I started Botox treatments that gave me relief for a month, maybe two. Those months were probably the happiest because that was one type of pain that was gone. One thing I didn't have to worry about. I didn't have to take medication for that.
Now my stomach is in constant turmoil. First is was a sharp, burning sensation. Then it morphed in to cramping higher up in my abdomin. I already was taking Protonix for my IC so why wasn't that helping with the acid reduction? That question didn't matter. I doubled doses fo that, added Zantac 150mg twices a day and now Prilosec. The pain is still there, the burning sensation gone. But over the last three weeks I have had to force feed myself yogurt, smoothies and soup. I still lost over fifteen pounds in the span of three weeks.
I feel like rather than search for answers my doctors have become complacent and started throwing pill after pill after pill at me in hopes that it might make things 'get better'. They do for a few days and it's right back at the start. I have swapped doctors, had my current doctors consult with each other all for nothing.
I need to come to terms that I am going to hurt and be in pain on a nearly daily basis for the rest of my life. My doctors aren't willing to help and my insurance isn't paying for my medications like they once did, my doctor's visits have increased and it's hard to wake up much less function during the day because I'm so fatigued.
I'm twenty four years old. I'm tired of having to consider the consequences of eating the wrong food, drinking the wrong drink. I have to think about how this action will affect me tomorrow. I can't drink alcohol (not that it's that big of a deal), I go into a bar where they allow smoking I'm going to be sick the next day (migraine, a cold, or fatigue beyond belief). If I want to go anywhere that requires a drive longer than thirty minutes I have to plan out bathroom breaks, breaks to stretch my body out because if not I will be hurting so badly the next day. If I'm having a bad day, no sleep, I can't grab a cup of coffee or even a Coke. Not if I want to manage to sit through a class that lasts an hour and fifteen minutes long.
How many people my age have to worry about these things? I'm ready to be done with medications and to let my body just be how it's supposed to be. If I'm going to hurt on the medications, I'm going to hurt off of them most likely too. Not much of a change. I might as well let nature take it's course and stopping fighting it. I'm done fighting. I never thought I would say that but I am. I don't see a point of fighting anymore.