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.

Maria Magdalena said...

I am so glad you are sharing on this blog, and that I popped in today to read this. I would lie if I said it encouraged me, but a pinch of perspective is sometimes worth a pound of encouragement....(Not sure if that makes sense, I just made it up lol). I am early in this Sjogren's journey, though I've been disabled by "mystery illness) for 8 years. I was diagnosed with Sjogren's last August. I started with hydroxychloroquine and had to get off of it due to extreme itch attacks. Now I am on Leflunomide and my hair is falling out. I don't know if I will have to go off of this one too, or if there is something that can be done. I've read only 10% of people have the alopecia with this drug, but the way I am, if there is a rare SE from a med I will get it. I was also on Amantadine, given to me by my neurologist which helped with fatigue a great deal, but had to go off of that one due to a strange and ugly vascular bruise pattern with edema in my legs. Just when I thought I was making progress... NOPE... rug pulled out from under me again. Seeing your post, I want to cry because your struggle might be my future, however it gives me perspective that having deal-breaker reactions to drugs is common and doesn't mean I am a "picky baby".

Maria Magdalena said...

Also, do you mind if I email you? I have no one to talk to about this.

Liz Gonzalez said...

Thank you Julia! I just came across your blog today. I too have Sjogrens. I was diagnosed officially in 2013 but had the symptoms for much longer. Ive also got Fibromyalgia. I just started going to a new Rheum. so Im hoping to try some different meds. Everyday I want to skip this mess and go straight for the cotton candy lol!! Im soooo over SS!

Meg said...

I'm in.