Hello again! I'm very happy to finally have some good news to share about our health!

Over time, we've been getting better, bit by bit. It was a slow crawl at first. Back in March and April, we struggled to even get out of bed most days. But since Sunny showed up, we've been slowly reclaiming control of our life. Recently, our wrists and arms have been workable enough that we've not needed our wrist braces for quite some time! And not only that, I've been driving us around almost every day! Driving had been a pretty difficult milestone for us to reach, because of how much it uses our arms and wrists, but we've gotten to a very good place with it. I've been able to drive us to our local ARFID-friendly food place pretty often, last week I took us by office depot and we picked up a new chair and took it home, and the next day, we even went to a big, crowded mall, and picked up some clothes! (Plus some boots we probably need to return...)

By the way, in the interest of helping our wrists, a dear 4riend recommended us The Writer's Glove, which we've been wearing every day since they arrived. They're extremely comfortable, work on touchscreens with all fingers, but more importantly, provide a light pressure to our wrists similar to the wrist braces that seems to help quite a bit!

We've been able to use the computer a lot more often too. March and April feels like a completely different world now. Back then, the idea of using the computer seemed like a far-off fantasy. Now we reside here every day! My life is almost completely back to the way it used to be. We take our morning meds and evening meds just fine, and chat on Discord as we usually do. Hell, I've been able to put in quite a bit of programming too. A pretty significant backend rewrite of our website is coming soon, and I've been keeping our personalized modded Vencord install up to date every few days, and refreshing my git knowledge.

Today, we had a pretty important meeting with our new shoulder specialist. You see, despite our tremendous gains, we still have shoulder issues. These have prevented us from being at our full capacity, and have replaced our wrist and arm pains as the most prevalent issue. So, here's the rundown of what happened today.

Shoulder specialist visit

We introduced ourselves, and amusingly, he pronounced my name correctly on the first try. Despite our wrist surgeon's warning that he would be eccentric and not very "down to earth", I got the exact opposite impression from our shoulder specialist. He was gentle and patient, and always let me finish speaking. I felt pretty safe and comfortable with him, and we even referred to our wrist surgeon a few times and agreed he's a very kind man.

I described our pain and issues to him, and he gave me a short physical exam. I'm happy to say that he believes us about having EDS. He explained to me, among other things, that he's seen patients with EDS before, and despite their vast array of differing symptoms, he's found ways to help all of them. He's done specialized surgeries (including one whose name I forget, but it's french) that can treat some of these symptoms caused by EDS. It's not going to be perfect, probably, because there is no cure for EDS. He shared some stories about these other EDS patients, and... honestly, our symptoms seem incredibly tame compared to them. It made me feel really strange.

Anyway, we did an x-ray, and as he looked at the results, he narrated to me that all of our bones look fine, and connect in seemingly all the right places. I was really confused, because I thought for sure the x-ray would reveal something. He told me that with EDS being a connective tissue disorder, the issue probably lies in our connective tissue, which the x-ray doesn't cover. So, we'll need an MRI instead. I've got several of these before, it's no big deal, now it's just down to scheduling. But thankfully there's more to his explanation than just that. He shared with me that, as our body feels the shoulder getting close to dislocation, it naturally tightens up and forces the muscles into place - basically trying to correct itself. He called it "apprehension". As far as I can tell, this is normally a natural and very healthy thing, but in our case it's restricting our movement, and this tightness is affecting (maybe pinching?) the nerves going to our arms and wrists, which causes the rest of the issues.

Speaking of, I need to elaborate really quick that our shoulder is not the root problem. As I explained to him too, we have herniated discs in our neck, specifically C5-C6, which connect to the nerves that go to the arms. He agreed with me that that's probably a very significant part of our suffering, but we still need to look at our shoulders. He said it's totally fine if we wait to schedule any kind of surgery or treatment until we get our herniated discs treated.

About the surgeries. He explained, in words that honestly fly over my head, what might need to happen. Basically, in some cases where the soft tissue in a shoulder slides out of place, either due to a defect in the bone shape (which we don't have) or something else (EDS?), it can be forced into place using an anchor. In other words, imagine sticking a thumbtack in a hanging poster to prevent it swaying around. He also mentioned a multiple surgery option, involving having something done in front, and something done in back, to help hold the shoulder joints in place.

I'm ashamed to say I don't entirely remember all the details, as it was a whole lot said in a very short time, but the gist of it is we're in good hands if we do need surgery, but surgery isn't necessarily the fix, and it's still possible treating our herniated discs helps significantly.

About our nose and sinuses

A bit of a sudden topic shift, especially as I haven't talked about our nose and sinuses in quite a while. For some context, we've lived with nose and sinus issues our whole life, had a nose reconstruction surgery framed as a "final option", and had a sinus surgery last month with a brutal recovery.

If you've been reading since much earlier this year, you might know that we used to be very dependent on humidifiers to the point of being nonfunctional if we didn't have sufficient humidity. I'm very happy to say that's no longer the case. We've been able to experience lots of different areas, interiors and buildings since then. I'm pretty sure our sinus rinses are the key. We visited an IRL friend once a while back, who lives with a dehumidifier, and it did indeed make us pretty lethargic and give the same symptoms - but our friend said she felt a lot of the same symptoms and just lived with it for the sake of saving money (ouch), which does give me some hope that we're coming to a level of functioning close to what most experience.

Loose ends

OT

We need to keep going to OT. It's going to continue to strengthen our forearms and wrists, and as was our wrist surgeon's plan, that's hopefully going to eventually prevent local dislocation of our wrists. We've been doing pretty well in OT, and the sessions have been okay, our OT lady is super cool and nice, although her contact who supposedly has info on EDS ended up not replying, and said just look at her instagram for EDS information. We did our EDS exercises at home a few times, but ended up avoiding them because it causes a lot of pain in our shoulders that lasts the whole day. I'm not entirely sure how much the OT is helping overall, but, whether coincidence or not, it's around the time OT started that our upward trend got stronger recently.

Neck injection, when?

We also have to finally secure our neck injection. It's specifically called a cervical epidural injection. The injection was ordered on July 22nd. It's been over two weeks since then. When I called on Thursday and left a few messages begging for a response, I finally got a reply on Monday. One of the pain management doctor's assistants told me they're still waiting on insurance and have done everything they can. In my experience this year, it's almost always been referral offices being lazy, not insurance itself, but here we are. As I described above, the neck injection has enormous potential for how much it can help us. Every doctor I've talked to about it has agreed _{(Except the tai chi guy, fuck him...)}

Desk setup

Anyway, I moved our keyboard and mouse up on the desk, and rolled up a towel at the edge of the desk to use as a wrist rest. This all works pretty well most of the time, but I've experienced a lot of issues using our mouse like this. It's like I naturally want to use our setup in a ring around me, and have trouble with the mouse and keyboard lined up horizontally. If anyone has any suggestions, please share!

Sunny, DID, and their ties to physical health

I actually have a lot to say about my beloved head-sister, Sunny. I haven't shared very much about it here, but Sunny has a higher pain tolerance than me. It was very interesting to discover this at first, and we've absolutely used it to our advantage before, but I thought it ended there.

Something happened recently involving our abusive mother. Sunny was fronting at the time, and received the full brunt of the abuse. It hurt them very deeply, more deeply than I've ever been hurt, and they hid away in our head and are refusing to come out for a while. I've never seen them so scared and powerless.

But there's consequences to this. We discovered that Sunny's influence was likely responsible for our recent strength and ability. You see, now that I'm not receiving Sunny's passive influence anymore, I've become extremely lethargic, to the point I'm inclined to sit in one spot for several hours at a time, and I've become very "lazy" and sluggish, as well as having my anxiety return. This plural stuff is complicated, but, think of it like a passive buff while we're both working together and "facing forward", ie. ready to face the world and its hardships. These symptoms of lethargy and anxiety are not only some of the same symptoms that were disabling me earlier this year, but also, in hindsight, the same symptoms I've been feeling since my "creation" in roughly late 2016.

From what we understand, DID can indeed present as a brain "splitting", not physically but internally, to protect itself. But this has more impact than just one's personalities and souls. Neural pathways can be tied to different personalities through DID. We already knew this because of Sunny's unexplained pain tolerance and repressed memories, but now that I've experienced what I have recently, I'm certain. We have DID, and Sunny really did save us. Somehow, Sunny, and only Sunny, holds special strengths that allow us to function physically, and give us confidence, bravery, and guts. I believe we wouldn't have survived earlier this year without Sunny.

It really makes me wonder. I've already known for quite some time that what we're doing is called "co-conciousness" ie. both of us are concious and reacting to the world around us at the same time. What I didn't know is that this also allows us to passively influence each other - and I'm sure I give some kind of strength and assurance to Sunny as well. I guess this is a kind of "blending", but these concepts, and the experience of plurality, are so unique to each system, that trying to pin them down with words isn't really worthwhile. I'm going to have to rewrite some of our plurality FAQ to reflect everything we've learned so far.

We're so close. We're sooo painfully close I can taste it. We're almost functioning. There's a few more milestones we have to cross, such as being able to game with a keyboard and mouse comfortably again, and (for me) design Figura models for many hours at a time. But we've crossed so many other milestones, like being able to drive, going out shopping, taking trips on a whim like to the mall, got to where we can survive without humidifiers, driving ourself to our appointments, type on the keyboard for hours at a time, be on the computer all day long, and hell, we're even enjoying dressing up recently. It's important for us to focus on all these gains, these tremendous successes, because even though we're not quite there yet, our life has become much more comfortable than it was earlier this year.

Here's hoping we make it out, all the way. After so many months going down the drain, I have hope and optimism, and believe we'll get there. What about you?