Settle in, y’all.
This is a long one.
First of all, yesterday was ortho day – and that’s never good. But this time it was different.
I also had another appointment scheduled after ortho.
And I have STILL been incredibly sick with sinus plague that is causing nosebleeds and worsening body pain and fevers and a ruptured eardrum. And I’ve just started a kickin’ round of Levaquin for ten days. It’s just the wintertime spoonie cluster. . .
I wasn’t even going to make it out the door FOR the appointments as holy hell awful as I felt, had it not been for my husband and him getting me together, which was a Herculean task.
And I am SO thankful that he did.
The first appointment was my orthopedist – also known in my world as the “Be Sure To Take A Handkerchief” appointment. He never fails to have just plain shitty news and make me cry – but this visit was something else entirely.
I reported to him my new diagnosis of Complex Regional Pain Syndrome (CRPS) and shared with him – as much as a person can in their ten allotted minutes – what all has happened and showed him the pictures of the stages my feet go through.
He confirmed the diagnosis (not unexpected).
At that point, I was prepared for a referral to neurology and physical therapy as CRPS can best be at least significantly slowed in the the first six months and my symptoms are already spreading up my leg, to my right foot, into my eyes, and, later yesterday, into my right hand.
Instead, I was advised that I should “never have an elective surgery” because that will spread it rapidly – something I already knew – and that there was no point in adding another doctor as there is no treatment for CRPS. Also, there is no need to try physical therapy with my fractures. . .
To finish off my visit?
I’m just “cursed.”
Yes, he actually said that.
Now, he doesn’t know me. . .
He didn’t know that my husband had left work to take me to the appointment and was waiting on me outside. He didn’t bother to take note that my daughter who has never missed an appointment with me was not there so I was actually alone at a visit for the first time. He’s never talked to me long enough to know that I have severe anxiety. He didn’t stop to consider that when talking to someone about the “suicide disease” you might not want to tell them they are “cursed.” He didn’t know I was leaving there to go have a quiet breakfast with a book and then going to my very first therapy appointment. . .
For all the hell he knew, I was all alone and leaving his office to jump my cursed self off the roof of his building.
It’s not uncommon for doctors to get frustrated with chronically ill patients with “unfixable” diagnosis and leave the patient feeling hopeless. And it’s hard enough to deal with all of these diagnosis – especially as some physicians seem to forget that we DID NOT CHOOSE THEM – with a strong support system like I am so blessed to have.
What becomes of spoonies who don’t have support or available mental health treatment when they are treated so horribly?
And what doctor says that to a patient who has just gotten such an awful diagnosis confirmed by yet another physician? Hell, what doctor says that to a patient EVER?
Needless to say, I have decided to find another orthopedist to help me deal with these fractures and to manage my CRPS from the ortho standpoint.
However,there was one bit of positive news from this visit.
After my last cry-it-out visit at that office, I did some research and learned that I could safely double the dose of Vitamin D that he ordered which I have been taking every day. So I did.
(I didn’t do this on a wild hair. I have RA and my labs consistently indicate that there is practically no Vitamin D in my body.)
While all the breaks in my right foot are the same, of the four fractures in my left foot, one of them is showing slight signs of healing.
ANY sign of healing is wonderful at this point.
That gives me hope that as my prednisone comes down, I WILL find a physical therapy referral – and, believe me, I WILL – and I will keep taking my supplements and keep working on my diet and. . . THERE IS HOPE FOR MY FEET. ❤
Sooo. . .
I left ortho and my husband had to get back to an incredibly busy week at work.
I went and had a quiet breakfast.
And then headed to my very first therapy appointment ever.
And I realized, upon being asked, that I rolled in a full 27 years after my first anxiety attack.
Ridiculous I know – and something I would be incredibly upset if a friend, family member, or patient did.
I also realized that I’ve been saying I was going – and then promptly postponing, stalling, and cancelling for several years now.
Afraid, anxious, unsure about getting started.
And when I finally got myself there? And met my lovely therapist who also has autoimmune issues and opened my mouth? When I realized I had made the first damn step through the door?
Like I used to so often see with clients when I worked in mental health, there is some kind of mental block to actually getting yourself in the door for the first appointment – even though you NEED to and you KNOW it.
AND she even had some really helpful suggestions as to where to start with this HOT MESS with ortho and CRPS and physical therapy and those things that had me standing on my head a bit when I walked in her door.
So I am deeply grateful.
Also, when I was reading, as I was taking a writing break from this post this morning, as so often happens, I saw two things that were meant to come my way, I’m sure.
First was this article from The Mighty on how often overlooked highly functioning depression and anxiety is:
It’s worth a quick read for sure. I know it’s how I managed to NOT get to therapy for so long.
And the second? Appeared in my inbox – does it get any clearer 🙂 – from Ann Voskamp and it was spot on, meant for me.
I’m sharing it in case it’s also meant for my fellow anxiety peeps, as it’s really wonderful:
The last thought I want to share is that, while I was sitting between appointments, I read that Mary Oliver, my favorite poet, passed away yesterday at 83 (a quote from her lives at the top of this blog – it has since day one and always will).
I can’t adequately describe what her work means to me except to say that I have read and reread her poems and thoughts for comfort and as daily devotionals, that I have some of them posted on my mirror and on my vision board, that I have some of them committed to memory.
That I am deeply and profoundly grateful for her life and for all she left behind.
Rest easy, Mary Oliver. And thank you.
Be well, everybody.
Grace and Blessings.