Finding missing hope
Many months have passed since my last post. For that, I apologize. I’ve had to step away from this blog for various reasons. Honestly take your pick: depression, anxiety, bad mental health low self-esteem, feelings of helplessness, feeling lost and confused, forgotten… also shame. I’m ashamed that I stepped away for so long and it’s hard to admit.
I can’t be the only one who starts something, drops it (for whatever reason) and is then too embarrassed to pick it back up again. Coming back to Lunar Eclose took a lot of soul searching, and a good measure of forgiveness as well. You know what I mean with that, right?
But here I am
I considered this a failed project. Which, of course, meant that I failed. And that equals “I am a big fat failure.” It isn’t healthy at all, but I do this all the time. Either that or I guilt myself into finishing a project I didn’t really want to start to begin with. That isn’t healthy either. Luckily my husband never lost faith in me, but also never allowed me the excuse that I should never pick this up again.
It’s something I continue to work on. Unfortunately, money is tight, and a therapist isn’t in the budget, but I’m getting a second WFH job and hopefully, that will help. Not to say I am getting a second job in order to pay for therapy, but we might stabilize enough that getting therapy won’t seem like such a luxury. Especially with existing reasonable options.
Mental health is hard. And expensive.
Aside from that, physically, things are in an upward swing mostly. To quickly recap the last 5 months, I never touched Humira after that whole-body rash incident, I stopped Plaquenil and started Enbrel. I guess I’ll start with the rash.
When I say this rash was all over, it was ALL OVER. I found a bump on my labia, plus the lips on my face itched and split with bumps too. Crazy thing is, to this day, we still don’t know, without a shadow of a doubt, that it was Humira. Since the one dose I took last May, I’ve had multiple little recurrences of itchy little bumps on my hands and arms. After complaining about it enough times, my PCP decided it was high time I see a dermatologist. I wholeheartedly agreed. That is until the dermatologist left a hole in my arm.
Introducing..my bullet hole
The Derm took a punch biopsy 6 days ago and it’s taking a long time to heal, which is freaking me out. I’ve never had such a deep wound and I don’t know if I’m caring for it properly. Fingers crossed I will heal without complications. I need an infection like I need a hole in my head (pun totally intended). However, if it can lead to answers, I guess I’ll suck it up. I just don’t have to like it.
In other news, my retina showed early changes at my last visit. Of course, we were afraid of what that might mean. It was terrifying to hear I might suddenly go blind. I’ve taken Plaquenil for so long (8 years) and it was always a possibility, but I did cry in my retinal specialists’ office. (Embarrassingly, as I do during most of my doctor’s appointments)
You always hope you never get hit with bad AE’s.
Unfortunately, I usually do. The hope is I stopped Plaquenil early enough that the damage will be very minimal, if any. Still, it actually felt a bit off to stop taking it. I had been taking Plaquenil for so long that stopping it had even changed my “getting ready for bed” routine. However, I’m always happy to stop a med. It always makes me feel like I’m getting better. Even if I’m not. :/
So far I have no detectable visual changes. My visual fields are full, and my color vision is still up to snuff. We will have to wait until the medication is completely out of my system (about Augst 2020) to feel confident that my eyes will be just fine.
On to my poor joints
Switching topics just once more on you, my back pain is what it is. That old friend. Back pain and fatigue are my main issues right now (other than an annoying little rash that comes and goes) and it’s comforting in a way. Those symptoms are steady and as long as it doesn’t worsen too much, I guess I’m ok with it.
Walking longer distances is getting easier, but standing for prolonged periods, or standing up after sitting for a while still are a pain in my literal ass. At the very least, I can now sleep at night, which is wonderful! If it weren’t for feeling like someone beat my lower back with a bat every time I stood up out of a chair, I’d almost feel normal.
My right hand is still painfully tight when I try to stretch it out, and it’s now weaker than as compared to my left, but I can live with that too. My rheumy isn’t sure why my hand is crushing in on itself, but we can bet hard cash on it being due to inflammation in the wrist.
Inflammation: the bane of my existence
I was supposed to start physical therapy last month for my back and right hand but we couldn’t afford the $60 co-pays. Again, I’m hoping this second job can really pull us out of the deep end and into the real world. All I can do is hope.
So there it is. A quick and dirty update to quench the thirst.
After all this time, I don’t know what changed in my heart or mind when I woke up this morning to write this today, but I do hope that it doesn’t go away. I want to continue blogging. I want it to mean something.
At least for today, I don’t feel like a failure.
Love, laughter and gentle hugs,