slightly sleepier

Well, I’ve been doing “screen avoidance” for at least an hour before bed for a little more than a week and I think it is helping.  A little.  My bladder’s still waking me up, and I still have at least one drenched in a cold sweat episode a night, but at least I am not feeling like I am just napping instead of sleeping.  So hooray for paper books.

I’ve also added molasses into my diet this week.  I forgot how much molasses makes everything taste like gingerbready christmas.  I added a little bit to the pumpkin pudding recipe and a lot to what I’m calling “gingerbread bread pudding”.  Apparently it’s a decent source of iron, which is good since I cannot take iron supplements without them wreaking havoc with my stomach and gut.  So far, no havoc.  It’s got magnesium too, which I could also use since mine has clocked in low before.

So this week I have tasty christmas-y gingerbready goodness and some sleep, which sure is a welcome change.  I’m up to a pretty stable 125 lbs too, also excellent, and so far this diet isn’t worsening the gastroparesis symptoms.

Got my eye appointment today.  I called yesterday and asked if they had the forms electronically because I have such a hard time writing them out with no time and a cramped hand.  I truly have dysgraphia, always have – the nuns were beside themselves with my handwriting in 1st grade and my second grade teacher made me put my pinkie finger in between every word on the page to keep them from running into each other.  It’s actually gotten much worse as I’ve aged.  Not sure if it’s a neuro thing or what, but it hurts like hell to fill those damned forms out in the office where you gotta write write write and no time to take a break and massage your hand.  By the time I get to the bottom of the first page, it’s turned into totally illegible scribble with missing letters, swapped letters, and totally deformed letters everywhere.  I remember having to soak my hand after exams in college and grad school because it hurt so much from trying to force well formed letters onto the pages of the blue books.  If the doc isn’t a dick, I’m going to mention to him that I think they should have electronic forms.  It’s a frikking eye clinic at a frikkin eye B.A.T.H..  If anyone was gonna have electronic forms, you’d think they would!  The guy I talked to about it yesterday was like “duh? disability wha?”  I’ll call him a Jude, the boy equivalent of a Judy.  He was definitely a Jude.  So wish me luck at the eye doc, hoping he’s not a dick!

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  1. Jude! Lol! Lots of Judes are crappy, pharmacy techs.

    Oh, your post is so New England-y, not that I’ve ever been there. I can smell it! A long time ago I bought blackstrap molasses as that one has all the iron and my body wasn’t producing enough red blood cells (so iron was fine and not sure why I bothered?) and yucko! It tasted like blood–super metallic or something gross. If you can tolerate it, that really is a great source of iron. If you have a juicer, you can juice greens as I knew someone who did that before. Food for thought (pun intended). I don’t get the big deal with magnesium. It doesn’t help my myofascial pain and makes my GI tract run even faster. Argh.

    Hope the appt went OK and that they put the forms online–yeah, no eye doc I have does that either. Oh, so glad you can still read books! I’ll send you all of mine when I get my things out of storage, which will be never. Do you remember that link Sheep sent from the doc in Chile with the photos of EDSers with the death grip on pens? I never knew why I held pens/pencils on my 4th finger (or is that 3rd?) and kids would make fun of me when I was young. What jerks! Now it’s a mess with my vision, but I remember I’d try to write well and by the 4th line or so the BIG MESS would come.


    • Yeah, one of my dyslexic students tried to school me on how to hold a pen. He noticed that I hold pens too hard. “Death grip” about describes it. But there’s nothing you can do, you always revert back to that. It’s like not sitting with my leg crossed under me. I try so hard not to do it, but as soon as I let my guard down, up it goes.

      • I don’t get what causes the death grip. I’m the same way with utensils, toothbrushes, etc. My fingers are stiff and achy now, but I was fine as a kid and I didn’t drop things then either. Funny that the dyslexic student tried to help you out there. Trust me that I look even stranger–before the convergence crap came on, I had to fill out those forms you were talking about hunched over so they were 1″ from my eyes (plus the death grip). Haha.

        Btw, I sit the same way (well, cross-legged since not a HEDSer) and the geneticist never noted hypermobility in my lower body, but there must be since I was the w-sitter and I have knee pain, which I presume is turning into OA like my mother who’s already had one knee replaced. It kills my upper body to sit, but if I sit like that, it’s better for my upper body. Weird. Maybe it gives me more stability or takes the pressure off something. Who knows and who to ask? :/

      • I assume I sit like this because I am trying to squeeze the blood up out of my legs and into my upper body. Like crimping a tube of toothpaste.

        I’ve seen the hunched over thing in blind students. It kills me, and when there is a reasonable alternative (my god these forms exist in electronic format! we’re not still in the days of typewriters and mimeographs!) it makes me angry at whoever is distributing their forms in paper only format.

      • Thank you! Yes, I had to read/write like that from the KC before the convergence insufficiency came on, so now I can’t see at all–it gets so much worse if I hold things close. There needs to be some universal law like what the ADA did for people in wheelchairs. I get that books are out and I can’t read anything online for long anyway, but I can even do my taxes on a PDF through the IRS so what’s the story with the for-profit docs? Argh.

        I was reading a comment from an MD who thinks all docs should be accessible by e-mail for follow-up questions, etc (like coming into the 21st century). He did a residency at the hospital I was born at, so that figures! The ol’ do-gooders. Well, that would be great, but when they don’t get paid for e-mails, I don’t see it happening. I left a VM for the Judy at an office here to see if the doc knew of EDS as I was in need of an internist and no call back, so that’s a sign to cross that one off the list. Wouldn’t it be cheaper to get rid of all the inept staff anyway? When I had the 1st scar showing up in my cornea, I did e-mail my surgeon in CA but he said I’d have to see him in person. Oh, well let me find a ride all the way to LA and then pay you another $1k for a consult/testing, then the motel, and on and on. What a broken system we have. (Screaming.)

      • The ADA should cover this, accessibility to services at a doc’s office? A doc’s office in a facility that takes a fortune in federal grant money and federal medical payment? Oh yes, the ADA very much applies here and it applies for people with disabilities other than wheelchair-requiring ones. It’s just that the ADA(-AA) is not enforced except by individual or class action complaint. The feds leave the policing to the public. So unless someone says “hey you you’re stepping on my rights by not putting accessible forms online or making some reasonable way for me to access them equivalently and independently” the law is being broken but nothing is done. Not one tiny thing. Sometimes I feel like as an individual with disabilities, I am going through the world asking “is it worth the time, energy, and money that it would take to really fix it?” I’ve encountered quite a few really bad ones myself and have yet to answer that question in the affirmative. I have a theory that people like me are less likely to have faith that a lawsuit is going to fix things. I think the people who do are people who trust their parents, or who are just from a circumstance where they share an unquestioning belief that if not their personal father, there is some all knowing uber-father who *really* knows best.
        Sorry, tangent. Anyhow, yeah, it’s a really crappily messed up system. Docs should be paid for reading their emails, returning phone calls, reviewing their patients’ charts. The pay per visit/pay per test is not working, certainly not for managing their patients with chronic health problems. I can’t imagine how frustrating it must be for the decent docs out there. It must suck.

  2. No, I absolutely agree and no tangent in sight. Oh, the sight jokes. The thing with the wheelchair accessibility came out of the international building code, as I had to take a course on that in design school (my reading days) and woah, the teacher was head bldg. inspector for the entire public school district, which is huge. He slept with that huge book under his pillow and I learned a lot–rather interesting in fact. So, unless a “means of egress during a fire” comes into play, I’m sure it is up to people with lots of dough and connections to make a change. Well, that’s just silly! What is this–some 3rd world country? Well, I’m too sick to take on the American healthcare system when outside of cities like yours, it’s all private practice and a much bigger can of worms (not that the big hospitals would be fun). I wouldn’t even know who to write a letter to. Are there lobbyists for the visually challenged and/or those with death grips and illegible handwriting? Rather sucky about the ADA, not to mention the docs who give you 5 mins and out you go. That’s the story of my life while they pretend to know what EDS is, until they have to pronounce it.

    Speaking of, I did chat with my optom before hrs this morning (Fri/24 hrs ago/lost). I wasn’t expecting him to answer the phone but he was there before the receptionist–a total Judy–and I was still up. Oh, he said that I need to be nicer to her and that she’s come a long, long way and it’s her 1st job! Haha. I explained that he owes me money and it’s her fault for screwing up the billing and she also lied to me about the check being in the mail 3x and stopped returning my calls. Omg, her name starts with J actually and she’s from the same culture as the rest of them (trying to be PC on your blog). Lol! My doc and I have a good relationship and a few things in common, so lots of jokes. We discussed a lot of things in 25 mins–like corneal cell turnover post-CXL and my big freak out–while he was “doing other work.” Funny guy, but I feel like I have a doc who cares since he talks to you on the damn phone (!) and I’ll know what’s going on in less than 2 weeks as he got me an after-hours appt. So yes, the good docs are losing money to deal with a complected case like me and he’s not even an MD–that one got fired. Oh, the ACA was such an abysmal failure I could scream. We need to bulldoze and start from the ground up and I don’t know how it all went so wrong.

    There’s my tangent… 🙂


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