Artwork © Damien Goidich, used with permission
I try not to think about when this is going to end. That only leads me to question if it will end. It's a known complication of my pituitary disease. The pituitaries affects the adrenal glands, the adrenal glands affect the kidneys. There are enough kidney stones in both my kidneys that this will be a repeat performance. They started when I was 17 and for a while there I got them like clockwork ever 3 years in the spring. They hadn't bothered me for a while there. Now they're back in force.
The anxiety comes from not knowing if I can manage the pain. That's my BIGGEST fear: that I will be in pain, and they won't want to give me the medication that can take care of it. They'll think I'm exaggerating, drug-seeking, hysterical, crazy, criminal... That's what I have to face every time I petition a doctor to deal with my pain.
The situation with my kidney stone almost went really badly. One of the nurses though it was cute how politely I asked for more pain pills. He then shared that at the nurses' station. The other nurses immediately got scared and started whispering. The nurse then told them that he didn't suspect me of anything because I still had pain medication left over from my first doctor's visit ten days ago. I was just following protocol that if it didn't get better by a certain date, I should go in for a CT scan. But just because he thought I was cute, I was almost branded a junkie. I'm just lucky my pain tolerance is so high that I don't need much medication. Otherwise that situation could have gone a lot worse.
The kidney stones remind me where my pain has been, and where it could be again. It reminds me I'm still terribly vulnerable, still terribly frail. "I can hurt you any time I want and there's nothing you can do about it." Talk about an abusive relationship! I'm drinking water like a mad woman and pissing like a race horse. I've swollen up ten pounds because of the prednisone. My kidney stones are calcium oxalate, so I already avoided those in food sources, but I'm loathe to give up chocolate and dairy. (It's good news for my bone density, however.) I live in constant fear of what my body is going to do to me next!
"You'll get through this... it won't be this bad forever..." Sure, but someday, it might be that bad forever. It was before, for years. Not everyone dies peacefully in their sleep. And even though there is end-of-life "comfort care," the doctors will sure let you suffer in agony for a long time before they let that be an option.
Ironically, I've been more productive with the kidney stones than before. The pills I have for my kidneys also takes care of the pain I have from my nerves. I'm drawing, I'm painting, I was able to help one friend with his resume and another with his college essays. I've been able to do more writing. I can rely on my hands to not torture me. The pain pills give me freedom.
I moved across the country TWICE to find a location where my pain was tolerable enough that I would be able to muster through without pain pills. Not because I wanted to. Because I had to. No one would give me access to medication that gave me pain control, and I wasn't going to break the law. The sad thing is, it's easier to get these drugs from the street. Drug dealers don't require CT scans and urine exams. Only problem is, one 5mg percocet---roughly 4 hours of pain relief, if your drug tolerance is low enough---meant four years in jail for one of my dad's clients. Their life is ruined now. That will haunt them forever. After being a felon, you lose certain rights. They are a second-class citizen now, literally. All for four hours. On the other hand, my migraine pills are $36 a piece and insurance only covered 6 a month when I needed 24. The non-narcotic pain pills are $27 each and I'm to take 3 a day. Narcotics are $4 for a month's supply, but trying to get a prescription... fugetaboutit.
I knew the humidity and barometric pressure changes made my pain worse. I hated giving up the doctors in Seattle that had taken care of my other issues so well, but the pain issue was just too overwhelming, physically and economically. So I moved to an arid climate at elevation so the change in pressure isn't as severe when it rolls through. The move helped significantly. Mind you, that doesn't mean I'm functional where I am now. It means the difference between being able to get out of bed or not, which is totally worth it. I can walk to the bathroom with out screaming. I can treat my migraines with ibuprofen instead of that expensive medication. I have my bed-ridden days, but they're not as frequent out here. It's thanks to my father that moving was an option. Other people aren't as lucky.
I want to be able to work. I have that capacity if I have pain control. I have the desire, the skills and the value as an employee to get work, even in this economy. If I had a body I could count on, I could do that. If I knew that I could get up in the morning, take a pill and not have to worry about some attack during the day, I could be NEAR-NORMAL. This isn't about feeling high. This is about feeling good enough to take care of business. This is about being productive, instead of being a lump on the couch counting off the minutes until it's over. This is about getting OFF Social Security Disability and being a contributing member of society again. Would I rather not have to take anything to be functional? Absolutely. But that's not realistic.
I know my doctor's hands are tied. I know that it could mean his/her license & livelihood just because the numbers look bad. I'm not worth that risk. Doctors don't go into business to be harassed by the government. No one wants that. It's easier to just let me, and others like me suffer. I don't blame them for that at all. They're doing the best they can. They're under ENORMOUS pressure. And I know it has to break their heart. That's why so many like me are simply ignored and told not to make follow up appointments. "We have nothing left for you..." is what they say. They do have something left for me, but they're not allowed give it. It's all the same in the end.
So each time I have to take another pill for this pain, I know that's pain relief in the future that I'm losing. I know I need the pain relief now: the kidney pain stops me completely. But I'd like to be able to stretch this medication out as long as possible. I know that's wrong. But each pill is another 4 hours of relief from my daily nerve pain. Each pill is 4 hours of solid work I could get done. Each pill is another flare that I don't have to suffer through in silence. I horde them as much as possible, knowing that's not what I'm supposed to do, but the fear of future pain is too much. I know more pain is coming. I want to have something to take care of it when it does. So if the pain isn't too bad now, I'll suffer through it. I keep the pills for when the pain is incapacitating. If the pain interferes with me walking to the bathroom, then it's time for a pill. Because, I've been to the ER with flair pain and migraine pain, and they don't give out medication for that. They have to see it on a scan. They have to see blood in the urine. Otherwise you're hysterical, drug-seeking, and screwed for relief.
I'm very blessed to have the support I do. But it's also hard knowing that one simple pill, and I wouldn't need the charity. One simple prescription, and I could take care of myself. I could get out from behind this computer screen, off this couch, and out in the world. If I knew I had a regular monthly prescription, I'd be back working full time in the IT industry. I could tell a potential employer, "yes, you can rely on me..."
Someday, I hope....