Well shit…This ain’t better.

The words “we can start tapering you off the Prednisone” were music to my ears. As I danced my way out of my nephrologist’s office, I pictured my life resuming to normal. Excitedly I envisioned the disappearance of my moon face, buffalo hump, and all the excess weight I have gained. I looked forward to the day my skin was more flesh colored than cooked lobster color. More importantly I thought my kidney disease had been pushed into remission. I thought I was good. On the bright side some of the many side effects from taking the high dose Prednisone have started to diminish. I swear I can make out a jawline. The side effects of tapering off the medication have been a whole other hellacious experience.

The pain and fatigue is like nothing I ever experienced. Sometimes I get aggravated by the complaints of friends and family who claim to be ‘tired’. I resist the urge to say “you don’t know what tired is until you realize 12 hours of sleep did nothing to diminish it”. Waking up tired is my baseline, and staying motivated to complete my daily activities a daily challenge. I don’t make those comments in response because you all have the right to be tired. Hell, I remember my life before autoimmune disease wreaked havoc on it. The normal fatigue of being a mom, working full time, running a household, and still managing to squeeze in miles of running or biking. On top of the fatigue is the constant pain. My knees and hips mostly, but often my back and arms as well. Some days it hurts to get dressed, others the idea of stairs and carrying laundry up them seem overwhelming. As my eyes follow with dismay whatever item I had dropped to the ground while contemplating how important that item is before determining if I should expel the energy, bear the pain, and retrieve it. My children have grown accustomed to my requests to help with menial tasks such as this. Most mornings involve me me uttering something along the lines of “fuck me” as I steady myself before attempting the first steps of the day. Gone for the time being are the days of me springing from bed. I still push myself to walk every morning and multiple times a day, but honestly it’s never without some sort of pain. I still go because stopping would mean admitting defeat, and I will be damned if I am ready for all that.

The main question, was it worth it? I fully understand that it was a shot we had to take, but the Prednisone did not push my kidney disease into remission. Off the medication completely for close to a week, and my labs keep coming back each time with a decline in my overall kidney function. My doctor has discussed getting me in on a clinical trial, and other options that were available. All of them with new or unknown side effects. My kidneys are no better or worse because of the treatment, yet my body has gone through the ringer. With so may unknowns I can not honestly picture where I will be in a year’s time, and what condition my body will be in. So the short answer is no, unfortunately it was not worth it. I would love to end this with something more positive than this, but try as I might even I can’t find the silver lining to all this shit. I am in a weird place with all this. It is not depressing me or causing me anxiety, but it is very disappointing. I am not going to cry and wail about the injustice of it all, but I acknowledge that this just ain’t fair. This is chronic illness though, and I am just one of many people who go about their days, push down the worry, and carry on. They silently endure pain and the unknown, all while going about their days. I guess that is my silver lining. No guarantees folks I do have genetics working against me, but perhaps having autoimmune disease will make me less of an asshole ;). Only time will tell my friends.