Monday, May 18, 2020

A Therapy Merry Go Round

I feel as though I were a five year old version of myself this morning.

Well, a five year old saddled with aches and pains and covered in a rash. Oh, brother.

This kiddo version of me has been on a lengthy merry go round ride and hopping from one horse to another.

Ooo. I like this one -- no, wait, this saddle is uncomfy. Maybe this one? No, it's too tall for me to get up on. *stumbles to next horse* Waaahhhh! I fell off this one onto my head! And this one isn't going round and round at all!

I have failed yet another DMARD -- disease modifying anti rheumatic disease -- medication. Which makes me feel like that five year old looking for that perfect horse on an amusement park ride. This morning, I'm in the middle of a lying on the floor flailing my arms and legs and wailing tantrum because I want to be like all of the other kids! I want to be sailing around in circles with my pigtails flying in the wind on a beautiful carousel, too! I need to find the perfect merry go round horsie that will deliver that kind of experience but my horsie seems to be always just beyond my grasp.

Sniff, sniff......pardon me as I blow my nose and set aside my self pity for a minute.

So why have I been on a DMARD merry go round for seventeen years, you ask? I ask myself the same question. Repeatedly. Especially after yet another drug trial that ends in either catastrophic side effects or lack of any effect whatsoever.

My autoimmune diseases have gifted me with several symptoms which include dry eyes, dry mouth, sluggish thyroid, foggy brain, peripheral neuropathies, joint pain, vasculitis, a lupus head to toe skin rash, neutropenia, and bone crunching fatigue. So I find myself on a decades long journey to find something - anything - that helps tame at least a few of these nasty beasties that have traveled with me since 2003.

I have recently had to hop off injected methotrexate, the latest horse on my pharmaceutical carousel ride. Dr. Young Guy and I were hopeful that after three months without further drops in my already low neutrophil counts and a lull in skin rashes, that this could be THE ONE. But alas, gradually over the last month my rashes began to return and my joint pain and fatigue came roaring back full force.

I could attempt to list here all the medications and therapies that we have tried, but that would just prolong my tantrum. Suffice to say that the list is long and yes, does include various and extensive dietary modifications.

Which leaves my amazing rheumatologist scratching his head and doing yet more research into treatment options for me. Thank goodness for telemedicine during this social distancing time. It is so easy for me to simply send pictures, have phone appointments, or video appointments. I can stay in touch with my care providers with a click of my keyboard.

If only the answers to my problems were accessed as easily.

Are you in the same amusement park as I am? Betcha anything a majority of my readers are. What do you say we just skip the whole thing and go get some cotton candy?


Anonymous said...

Yes...I think most often I want to skip the whole mess and go right for the cotton candy...

annie said...

I feel for you Julia and understand you. You're willing to try anything to feel better, despite the side effects, but nothing is working. BUMMER!!! Personally, I'd go straight to the chocolate counter. Hope you'll be OK soon. Keep safe.