Hi again!
The thing that I think is the most important, though, is her friend. She told me about her friend who also lives in Texas. She lives with EDS and POTS, just like us, but less debilitating I imagine, because this lady is an accomplished researcher in EDS and POTS, and even recently gave a lecture at a Dysautonomia conference. I love the spirit this woman has, that she decided to research her own condition, and found such success with it. Our OT said this friend is very sweet and kind, friendly and approachable. She gave me her email address, and encouraged me to email her, explain our situation and ask if she has any resources to share.
So basically, our OT's friend might be able to give us further help and resources about our EDS, including possibly help getting a diagnosis! That's huge! I just sent her an email, and we'll see what she says!
But the good news keeps coming. Let me tell you about the outlook on our OT exercises. Right now, we just have a few exercises to do: Neck rolling ones, shoulder rolling ones, and a grip strength exercise involving pressing something into this malleable putty I got to take home with us. Our OT told me that we're an unusual case among her EDS patients - most of them are too stiff and rigid and need more flexbility, but in our case, we're too flexible and need stability. She believes there's hope for our recovery, and we'll be able to maintain most of our range of motion as we continue.
I explained our exercise intolerance to her - she clarified that what we've been calling "exercise intolerance", which is one name for it, is more like dysautonomia. Dysautonomia is a group of symptoms including "seeing stars", being lightheaded and dizzy, nausea, fainting, blacking out. This is linked to POTS, another condition we have with the same symptoms (but triggered when standing up from sitting). These are all things we've experienced, a few times at random, but mostly, yes, triggered by standing up "too fast", and by exercise. But the important thing is, she told me stop before it gets triggered, and we're going to microdose exercises - take it a bit at a time - so we build up strength and tolerance. In short, our exercise intolerance won't be a problem.
Also, importantly, we talked about the underside of our wrists, just at the base of the hand. This spot is where the cut was made on each hand for our carpal tunnel release. And before those surgeries, those spots were unbelievably sensitive to touch. They're much better now, but are still very sensitive. She lightly glided a thumb over it, pressing gently, but it still made the tendon "pop" and I yelped out in pain. She indicated this is something we'll be treating too. She explained that, being in chronic pain, our body needs to release that pain and tension somehow. She can tell that our tendons there are way too stressed and tight, and implied we're going to do some light exercises with them over time to help relax them.
I was worried about this concept of exercise and building muscles and strength, so I asked her about our diet. I explained about our ARFID and low tolerance to foods. She told me that won't be a problem either, because she, one, isn't a dietician and can't give advice on it, but two, she and some of her other EDS patients also have issues with food, and they handle this fine. We talked about it briefly. I mentioned how our diet is mostly snacks, sometimes noodles with cheese, and recently I've had a few bananas. She said bananas are great (and went on a silly tangent with the others in the room about banana heartburn), but told a story: One of her EDS patients was raised vegan, but started eating meats, and now only eats meats, claiming they help her a lot. She also mentioned that electrolytes will really help during this OT process - we've been getting ours through Gatorade. I mean, if it's one of the few things we can tolerate, we have to take it.
I want to talk about this for a minute. As you might know, we hate foods, and trying new foods. But it has to be said, we do love what little meat we've had before - it's just been in the form of either burgers, fish sticks, shrimp, or really crappy tacos or homemade burgers. As far as I can tell, a lot of the meats at our local grocery store aren't great. I would like to explore any foods there that might turn out great. I asked our birth mother once years ago about trying fish - she told me she refuses to buy it because, if we leave it in the fridge for long, it'll smell really bad. But I think now might be the time to press her on what other options there are for meat, and possibly try fish sticks and shrimp again. I was hoping to eat them again before, but there's this whole thing with our brother and his air fryer being super gross and unkempt.
There's also another strange avenue to explore: hormones. Hear me out. She explained that, among some of her EDS patients, she's noticed that women who are pregnant, trying to get pregnant, or breastfeeding, can tend to have more joint pain, including falsely diagnosed carpal tunnel, then have it fade as soon as their hormones return to normal. Now, she wasn't suggesting we stop hormone treatment - she said as much - but it did give me an idea. Sometime last year, I did up our estrogen dosage from 2mg twice a day to 2mg 4 times a day. I can't help but wonder if cutting it in half, back to its original dosage, would help? It's certainly an experiment worth trying, and wouldn't really hurt.
I was really glad at every turn talking to this OT today. She seemed to listen to everything I said, and as I demonstrated some of our EDS quirks - sensitive skin, easy bruising, some bruising she noticed on our shoulders, our weak grip strength, popping our joints... she hung on every word and believed me. The way she seemed to affirm what I was saying and believing really gave me confidence and hope. I think we're in good hands. Not to mention, she said the other OT who's going to help us - it's common for PT and OT places to swap out helpers sometimes, to cover everyone - has also worked with EDS before, is super kind and friendly too, and would easily understand the situation. I believe these two OT specialists are very patient and receptive to our plight, and will be able to offer a good amount of support, both physical and social, as we continue. 
We're going to be seeing them every Tuesday and Thursday, and at home, we need to do some of these exercises, twice a day. I'm super sore after just the consultation and exercises in the office, but I want to believe what she said about us building up a tolerance to these exercises and pain.
By the way, I'm thinking of adding an option to the user settings on our site here, so you can filter out posts by tags, in case some of our friends don't want to get health updates in their email. Maybe I'm putting too much thought into this, but I really don't want our weblog to just be health posts. It just so happens that a lot of health-related things are happening right now.
