Okay, I know I said last post that I was only going to focus on the positives and all that happy rainbow and unicorn crap but that leaves me without my favorite outlet here to deal with the whole reality of my experiences and how truly shitty this new treatment plan is. Since its my blog after all if I want to change the rules then I get to. Right? The truth is, if I don’t acknowledge and share the roller coaster ride with the downs as well as the ups I might go insane.
It’s been a month with this new immunosuppresant drug and this past weekend I actually uttered the words “if this is how the next two years are going to be I think I’d rather have died.” That sums up the very lowest of the low points of how I’m feeling. I waver between being so mad at everything and everyone and then in tears feeling like an imminent emotional breakdown. It really really blows. I think the worst part is knowing that I’m facing two years of this treatment. IF it works.
The irony of this new drug is that it is supposed to heal me and yet I feel like total shit. I’m tired – even more than I have been since this all started. I have headaches EVERY. SINGLE. DAY. Most days I wake up with my head pounding and it never stops even when I lay down at night to go to bed. Saturday my head hurt so badly that I had to eat dinner with my sunglasses on because the light hurt my eyes too much and my family was opposed to eating in the dark. I didn’t eat much since I had no real appetite with the pain. My joints hurt like I’m an eighty year old – especially my knees and hips which makes walking super painful regardless but worst going down stairs. I had a drug interaction with my statin which exasperated this most delightful side effect at the beginning and I’m still waiting for the pain to go completely away now that I’m not taking the statin anymore. I’m naseated and feel like I’m going to throw up at the drop of a hat. There are days it is worse than when I was pregnant. And, on top of feeling like all this, I broke out in acne and look like a teeny bopper who doesn’t know how to take care of her skin again. Yippee. At least I won’t get the cancer later so there must be something okay about this drug, right?
I met with my doctor this morning and there are some tiny bits of good news. My proteinuria is a little better than last month and my kidney function has rebounded solidly back into the normal range now that I’m not taking most of the original meds that impacted it while trying to reverse the protein loss. However, I was unable to continue to avoid the dreaded addition of steroids and now I’m waiting to balloon up and look like a fat cow on top of everything that I’m already dealing with. That should be great for my psychological health. Hopefully this won’t happen but I’m not holding my breath. Hands down the best news of the morning is that I can add fish back into my diet without losing the benefits of being a vegetarian. Sushi anyone?
My emotions have been all over the map the past week. It started with my inability to walk because of my hip pain last weekend; then I had the worst week of yoga starting with last Monday’s class where I couldn’t do most of the poses because of my pain and then not even feeling up to trying either of the other times I had it scheduled; and finished up when I tried to do a 5K on Saturday and couldn’t finish it. At one point I was bringing up the rear and could barely talk while I tried to keep up with my friend who was pushing her sister who is fighting breast cancer. I know it is progress since until now I haven’t even felt like attempting a race but then when I couldn’t finish – mostly because I was an idiot who took my diuretic before I left home and had to break off early to find a restroom – it was even more of an emotional blow to my already delicate psyche. I spent the rest of the day with a throbbing headache on the couch feeling sorry for myself. Yes, folks, even I succumb to the feeling sorry for myself trap once in a while.Yesterday was much better and I got a few hours in the morning free of headache pain so I didn’t spiral out of control and am back to wanting to kick ass and take names. Maybe a nap first though? It helps that I was back on my yoga game this morning thank gawd.
Even with all the emotional breakdowns I have cause to celebrate. Although the 5K was a dismal failure that proved to myself that I can no longer call myself a runner *sniff*, it was the first race I participated in since the one last October that could have, and probably should have, killed me. The fact that I’m still fighting to be healthy and haven’t given up in the face of all the past year has brought me proves I can make it through wherever this road leads. Even when it blows… I just have to stop every so often for a pity party apparently.
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