Reddit mentions of PILOT Dr. Grip Refillable & Retractable Ballpoint Pen, Medium Point, Black Barrel, Black Ink, Single Pen (36100)

This may not be viable, but I find that my handwriting greatly improves when I use a fountain pen. Because they need to be held in a certain way to work, I find I pay more attention to the writing and make my chicken scratch much more legible. Consider a Pilot Varsity for a cheap way to try it out.

You could also try a pen with a better grip, like a Pilot Dr. Grip or Uniball Signo 207 Premier. Both of those pens will probably reduce some of the strain on your hand and may help you write better.

But, a pen itself won't work. It'll take deliberate practice to improve.

(Fountain Pen) Here ya go ladies, this is perfect for you! It has a nice grip for your delicate hands. It has a nice smooth tip that goes in and out at your pleasure. It has a nice stiff clip but with a little use, it will surely loosen up! We have them in a few different colors, so it fits any womans needs. It may look small, but it is by no means tiny. Grab one or two, depending on your preference. And dont forget ladies, always put a cap on it!

http://www.amazon.com/gp/aw/d/B00006IEBT/ref=mp_s_a_1_2?qid=1415854106&sr=8-2&pi=SY200_QL40

I'm glad to hear your parents are understanding--that really helps so much.

> my left si joint doesn't move/barely moves so if we can get it to drop back where it needs to that should fix a lot of my pain

Hey, high five! My left SI is also nearly permanently dislocated. Yay us! Has your doc/PT given you either shoe lifts or an SI brace? The brace didn't help me a lot, but it does help some people. The shoe lift did help. Essentially my SI is rotated up and back, so my left leg is a bit shorter than my right. My PT would get it back into place, but it'd dislocate again within an hour or so of leaving her. The shoe lift keeps my hips level, and helps the SI stay in place. It's pretty cheap, no one else can see it, and it really helped me--def worth a shot.

Also, is it your left knee causing problems? I'm guessing it is. When you see your ortho, make sure he knows about your SI. He won't be able to properly address the knee pain if your whole leg is out of alignment because of your hip--he'll have to address everything as a whole.

Here's the thing with POTS. A lot of people with EDS also have POTS, because our blood vessels are also made of collagen--which for us, is defective. When you move to stand up, your autonomic nervous system makes certain adjustments, to ensure enough blood gets to your brain while upright. It constricts the blood vessels in your extremities, to help 'push' the blood upwards. But our blood vessels can be a bit stretchy, and don't always constrict properly. That means blood pools in our legs, etc, and not enough gets pushed up to our brains. Because of that, our blood pressure drops. Then, to try to get enough blood moving upwards, our hearts start beating really fast. So you get the 'perfect storm', low blood pressure, high heart rate = dizziness and faintness, and general unpleasantness.

Add to that, many people with POTS have lower than normal blood volume, too. So there just isn't enough blood to go around in the first place. That's where salt and steroids come in. For some reason, our kidneys tend to just push all the fluids straight through, instead of adding to our blood volume. The salt/steroids 'trick' our kidneys into retaining fluid. That helps build up the blood volume, and helps us feel better. It doesn't actually 'cure' POTS, it just helps alleviates the symptoms.

Another thing that can help is an SSRI like fluoxetine (prozac) or SNRI like venlafaxine (effexor). They typically used as antidepressants, but they help stimulate vasoconstriction, so more blood goes up. I don't recommend effexor, it has awful side effects and terrible withdrawal. Fluoxetine is much less drastic and has few side effects for most people.

Beta blockers reduce the heart rate by blocking the receptors that are responsible for the effects of epinephrine and norepinephrine. It helps some people, but I'm not one of them. Essentially, my cardio told me that he could put me on a beta blocker and it would bring my heart rate down--but I'd probably pass out every time I sat up. Basically, your body compensates for the low BP by raising the heart rate. Take that away, and even less blood gets to your brain---down you go.

I should mention that not everyone with POTS has low BP when upright. If you're one of those whose BP raises, beta blockers may help you. Ask your cardio if that's an option. If you don't feel he's being aggressive enough in his treatment, don't be afraid to advocate for yourself. Or bring your mom in with you, and have her help explain exactly how much this affects your quality of life. I've found that most docs really aren't in a big hurry to treat EDS and POTS--they want to take things slowly and 'see what happens'; mainly because these are life-long conditions. Don't be afraid to ask for more if that slow approach isn't working for you. Be polite, but firm. Sometimes it helps to keep a log of your symptoms and take it to an appointment. I made a list of all the things I couldn't do anymore, and it got the doc's attention.

Also--compression stockings can really help! You can try support hose from your local store, or find compression stockings online (amazon is good). I prefer the thigh-highs, but ymmv. Also, I don't wear them in public, cause yuck. lol The other thing is to avoid heat as much as possible, including hot showers, baths, etc. The heat also dilates your blood vessels and exacerbates everything.


>I spend most of my days laying in bed replaying shows I've already seen on Netflix and I hate it.

I hear you. I've had a really bad flare since mid-Feb, and that's pretty much what I've been doing. I can't sit up for too long, so I browse reddit while laying down, then sit up to comment. lol

If your hands are bothering you that much, you really should see an OT sooner than later. Check with your insurance (or have your parents do it!) and see if you need a referral to see a specialist. Some insurance policies don't require that. If so, you could just make an appointment yourself and save some time. (I'd call first to see if they have experience with EDS--not all do.) If not, bug your primary until they send you.

Again, let them know you can't write, use your laptop, probably can't open bottles or carry a gallon of milk, I'm guessing? Doors difficult to open? Look on amazon for 'arthritis aids'. I know it's silly since you're only 19, but there's a lot of overlap in things that can help us. My geneticist recommended these pens, though I haven't tried them yet. I use the Dr Grip pens, they're fat enough to lessen the pain in my hands when writing. Also, those pencil grips kids use are great--and you can put them on colored pencils and lots of other things.

This got a bit long, sorry for that! Hope some of it helps, though. Just remember, YOU ARE NOT ALONE. There are a lot of us out here; we get it. Don't be afraid to ask questions, and feel free to pm me if you need to vent or whatever. I'm just hanging out at home being bored too! ;)