_{Really wishing I could make an icon just for health posts...}
Hi! It looks like we finally have an explanation for why my arms and wrists exploded in late October and March. And more importantly, I think we finally have an estimate on how long we'll be like this. Let's get into the update!

Monday: Rheumatologist: Asking for an EDS diagnosis

His response was, I kid you not, "we don't test for that here, apply for testing at the Baylor University of Medicine or eds.clinic."
Yeah, I paid $60 of my allowance just for that. This is the norm here.
On the other paw though, he did send in a prescription for muscle relaxants we have to take at night now, which should help shoulder and neck pain.

Anyway, the point is, we're now on a waiting list to be diagnosed with EDS. A diagnosis will help immensely, as we can use it to apply for disability. All part of our master plan, you see... (even if the appointment is expected to cost "between $250 and $500", yikes...)

Tuesday: Wrist/elbow surgeon: The plan

I've been anxiously looking forward to this visit for a long time now. The last time I saw our wrist doctor, he said that, this visit, we'd go over "the plan" to get us functioning again, and it'll involve OT (occupational therapy).

When he walked in, the first thing I did is stress that we do have hEDS, almost certainly, but we're in a waitlist for a diagnosis. He said he totally understands, and just telling other doctors we're seeking a diagnosis for hEDS should be enough.
I explained briefly how hEDS is a perfect fit for dozens upon dozens of symptoms we've had since birth. He said that sounds right, and if it is indeed Ehlers-Danlos, there are things we can do.
He also commented that I don't have to worry so much about proving my condition to doctors, because "anyone who's passed medical school should be able to tell from one look that something's wrong with your arms".

By the way, check out this older post and look at the last bullet point I made. Isn't it so cool in hindsight how he paid extra attention to my right wrist and the wrist brace, and probably started suspecting Ehlers-Danlos even back then?

Anyway, next thing: We talked about a shoulder specialist. He stressed how important it is that we get a shoulder specialist, considering our right shoulder especially is a huge obstacle right now.
He explained to me that actual, "smart" shoulder specialists are extremely rare in this area. Thankfully, one of them happens to share an office space with him! He gave me a referral, but with a warning:

He patiently described that "the smarter some people are, the less they relate to people. He won't have the same bedside manner I do with you." He cautioned me to try not to be so anxious around him, don't let him scare me, because he doesn't mean any harm, he's just eccentric, or like, detached from people and relating to them.
Also, nice side note, he added that he is giving me this warning because "I actually kind of like you, and want to watch out for you." Awwww.

By the way, it turns out this shoulder specialist isn't available until August 13th. That's 4 weeks away! The receptionist did tell me, though, if I call in intermittently over the next few weeks, I might be able to snag an earlier spot due to cancellations...

In the same way that he referred me to only the best shoulder specialist, he also put in a referral for an OT place he trusts to do us justice. He said they'll call within the next few days to set up an appointment - nothing unusual here.

But here's what's really important:

Why our wrists keep dying, and why the wrist braces help even though we don't have carpal tunnel anymore

As you can tell by the title, this is extremely important.

Our wrist surgeon told me that, even though it's not as bad as others with Ehlers-Danlos, we do have hypermobility significant enough to cause problems. He gave me a live demonstration:
He gently grabbed my forearm close to my wrist, and used his other hand to move my hand up and down. Instead of the wrist and hand simply rotating, my hand moved up and down with him a short distance.
As in, I saw my hand disconnect from my wrist in real time. Holy fuck.

Oh, and speaking of carpal tunnel, I asked him something very important...

I asked him: if we do have hEDS, is it possible we can get carpal tunnel a second time? He said yes, it is possible. I was a little frightened.
He reassured me, if we do end up with carpal tunnel again, he'll perform another surgery, but "put in a flap" to prevent it from happening again. Don't know what a "flap" is, but I'll take it if we have to.
But then he continued: Occupational therapy will strengthen our forearms, which will in turn prevent our wrist and hand from disconnecting.
As he said, "all you need is a millimeter. If your hand moves in just a millimeter, all your problems will be solved."

And, finally, he gave me an estimate.

Occupational therapy is expected to have an impact after 6 to 9 months of continuous training.

6 to 9 months.

That's a long time. Like, seriously. I was hoping, even banking on the assumption, that we would get our arms back to fully functional this year. But it seems fate has other plans.

I've already felt pretty guilty about leaving my Figura commissions closed for so long, and with several people waiting on me. I'm going to put a post on the front page there in a minute to break the news.
My friends have been telling me for so long that, if you can't work, you just can't work, and you need to make peace with that. But it's more about the idea that people are waiting on me, if that makes more sense.
Recently I even had someone come to me after hearing of some of my work, and while I did show them a lot of my work - hell, enough to make them interested in getting a full original model - I had to give the disclaimer that I don't know when I'll be able to work again due to severe disability. At least they were cool with it, but is everyone gonna be cool with it? I have to make money eventually, and I was doing so well, and if I don't put out more models to show off, how am I gonna get more people's attention, and... ugh...

I'm just hoping now that, when we do get in with that shoulder specialist, we can get some relief, one way or another, for the shoulder symptoms that are making it difficult to keep our arms raised for more than a few seconds without considerable effort. And yes, that means I've been in a lot of pain the entire time I've been typing this weblog post and the last few. It can't be helped. We're not completely non-functional, at least not anymore, but we are still in enough pain that just washing our hair in the shower can be a real task.

We also suspect, by the way, the armrests on this chair - I got it in January to replace our old, very noisy chair - are really uncomfortable. They seem to make our elbows go numb with use. From what I've learned, most of our friends rest their arms on their desk while using the mouse and keyboard. We've even seen it in action a few times. But we can't do that due to our setup - two monitors stacked vertically, but neither is compatible with a vertical monitor stand, so one is just on top of a weighted box, making both monitors have to be somewhat "forward" on the desk. I seriously want to get this fixed so we can get more desk space. It'd help so much.

Anyway, as usual with these health updates, I've got to give the outlook:

Coming soon

_{Or, "next time on Eir & Sunny health adventures"...}

• On the 22nd of this month, we see our new pain management specialists. It's going to be a consultation - so nothing's going to actually happen then - but it's still important because we'll learn 1. if they're the right fit, and 2. if they can help with our hEDS and fibro. I'm going to use the trick our wrist surgeon mentioned, telling them we're seeking diagnosis for hEDS, to get a leg up here.
• Psychiatrist televisit on the 25th. We have one every month so we can get refills for

  our ADHD meds, Vyvanse

  By the way, these have been extremely helpful! I'm on 30mg once a day. Take it in the morning and all the random daydreaming dissociative "lost-in-thought" episodes vanish...

  . But I'm going to ask for help with getting all of our current diagnoses in some kind of written form. I asked this last time too, and she gave me an email to message for it, but I 1. forgot the email address (dang it), and 2. want to press her for details on what I should actually say in the email.
• July 31st: Neurosurgeon. I don't know what to expect. I set up this appointment months ago. I wanted to finally get treated for the herniated discs in our neck that the shitty pain management dude we saw before refused to treat. I have no idea if this is going to help us, but what have we got to lose? I imagine herniated discs are intrinsically very serious, right? I want to believe having our herniated discs treated somehow will help.
• September 15th: We see the amazing wrist surgeon again. He said during the visit that he wants to see us again to make sure our treatment is progressing smoothly and we get the help we need. I super appreciate him.

We have 2 copies of an MRI of our neck taken in August of last year, that we're going to bring to the pain management clinic and neurosurgeon, and hope it gives them enough extra info to help us.