joy

Good for you for taking initiative! I bet this rehab will be so beneficial to you. Therapy is hard but its also so fulfilling. Just go in with that I CAN DO IT! attitude and you'll be amazed at what you can do!

Collapses are a big part of my life, and I just try to be consciencious of my surroundings and how I'm feeling. I'm known for being good at falling haha, and while its no fun there are ways to make yourself as safe as possible. stay close to walls when feeling sick and take it methodically. don't be afraid to take somebody's arm, and sit when you need to. lying down definitely helps, but the more you lie down the less your body adjusts. I'im strugglign thru this now

I have, and mine too is left sided. Had MRI but without contrast, that makes me nervous. let us know how your scans come out

I was told to expect it to take up to age 25 to recover

^Good way of wording it on your doc's part!

I'm doing a bit better already I think.

When I was in they wouldn't let me get up on my own either, and that sure didn't help my state!

to them a fall risk bracelet=made of glass lol.

and PT and OT is SO worth it, I've done over a month of full day therapy and lots of several time a week to once a week for months before and after

all this is super encouraging to me.

it made sense when they told me that, but i definitely wanted all your input!

I do physical and occupational therapy for my reflex neurovascular dystrophy.

today I went into the hospital for my first appointment in awhile, and once there Iw as forced to do way more than I was comfortable with. and was told that the more I am up and not lying down things SHOULD improve in the long run. though it might be the VERY long run.

I definitely agree that by lying down i'll just continue to degenerate physically and my body will adjust less and less to being vertical. but its SO HARD I just feel like collapsing. after being up for so long my mom and a friend at the hospital had to all but carry me to my car and I kept collapsing. I just want things to improve even a little, and I have no clue how I'm going to up my home therapy and attend school more (right now I go for half days and literally sleep in every class on the floor. thank goodness for tiny schools)

That is a lot to deal with!

I also get the tender scalp deal, is that dysautonomia related I wonder?

well it's a new day. I think I'm learning to adjust to a point, but I still am unable to do any school and getting out of the house those two short times this weekend took its toll on me. Still worth it though.

Hi Joy~

I must say I am surprised at how much you can do during a major flare. I'm in a low period, so yesterday I made it to the gym where I walked for a bit, came home and bathed, and rested for the rest of the day.

Today I was exhausted but I swept around my patio door and outer door, helped do some laundry, took an 1 1/2 hour nap, and hung out in my recliner watching some Olympics with my boyfriend. We got take-out because I was too tired to go out for Valentine's Day. I also needed to rest because I need to try to walk again tomorrow.

Hopefully next week will be better!

Cheers,

Jana

I propped back at the table to get my BP up best I could. and by the end of the night people were holding me up and I was carried to the car haha. should've used a wheelchair.

I'm paying for it now and doing all the worse, but at least I'm to the point where I can sit up for longer periods of time. I hope its going to start improving. Last week I could hardly walk at all.

Let's just chat about how we cope on a day to day basis!

Post what you were able to do today if you like and share anything you wish to!

Friday I went out with a good friend who took care of me at the hospital when I was getting my therapy for RND.

My boyfriend came and the two of them got along haha.

I was pretty exhausted by the end of the night, she was holding me up when we went to leave but it was so worth it, managed to titl back in my chair and brace my feet off the booth so I wasn't so upright and lasted for over an hour

Yesterday went out to eat with my boyfriend, no clue how i made it Friday was exhausting.

Today I feel awful but my heart is so full of joy from all the laughter and friendship, it was the first normal thing I've done. I'm three weeks exactly into my first truly major and debilitating flare

so glad to hear that you are feeling better!

hugs!

when are you expected to be discharged?

I would get that checked out, orange is not a good color.

^lol I'm a soprano....

Was an alto for years but voice changed several years ago. I happen to love it, though alto harmony is fun as well

^Thank you for your kind words!

I pray it is always something I'm able to make happen. At this point I'd probably have to sit or lean on somebody/the wall for a concert. but earlier in the year I wasn't doing too badly and stood for the entire thing!! my director kept winking at me she was so excited. My RND had taken away much of my ability to walk and I was almost done with my intensive therapy for my PT and OT so everyone was floored and excited to see me standing. which was special

I see you aren't formally dxed yet, if you get a disautonomia Dx and you can get a prescription for florinef, this may help you. increase your salt intake, and then with this drug it helps you retain salt because salt retains fluids

I'm so glad you have understanding docs!

I sent you an private regarding Dr Grubbs, by the way

HUGS!

I get dizzy riding the escalator. I'd love to ride a horse, but don't dare with this POTS.

I know what you mean, I hope that I can get my AD under control soon. I can hardly sit up many days. Very frustrating.

Flop: Keep your eyes out for more local and non show oriented barns. Mine is much more inexpensive to get lessons, and while not at ALL fancy facilities my trainer is highly respected in the area. Just beware of those who have no formal training, I've met some that would scare me to get lessons from with their off beat and incorrect ideas.

Casper: ugh not fun. I hope you can figure something out/you are able to improve your quality of life a little soon (we can hope together!)

^^when we reach a favorite harmony point, our ddawg [director] will clsoe her yes and look like she wants to cry. and at the end she'll make motions to us up and down her arms *goosebumps!!!* and draw tears down her face lol she's so cute.

isn't harmony glorious?

We're doing the Hallelujah Chorus this year! oh my!

I'm glad you have somebody else who will look out for you. I'm also glad that you're still able to do it despite the difficulty!!! thats so wonderful!!!!!!!!

a symptom of dysautonomia is excessive thirst, like you can never get enough because your symptoms are similar to one who is dehydrated, so your body thinks it needs more and more.

I too have this, I require about 100 oz. I drink constantly.

That's awesome, mine say the same thing. And are SO there for me to do whatever they can. and openly say that they are challenged.

It makes me smile to see that you have found an amazing physician! Not having that stresser is amazing isn't it?

Agreed, it is very difficult for me! However I would never dream of giving it up!

Standing through the concerts will be the most difficult for me this year.

But it brings me so much joy! and is worth the difficulty you are so right

I have burning sensations in my feet and have temperature skin changes, but I've always chalked it up to my RND.

RND for me causes constant freezing feet and ankles, color changes, and overall skin temperature changes from freezing to hot esp on afflicted areas.

I'm not sure what could also now possibly be my AD

I'd bring this up with your doctor, possibly more than one, and see if he thinks it is something more than what you've already been diagnosed as. You may have a third issue, or maybe just some more rare symptoms.

mental note: magically raise my BP for pharmacists

I'm blessed with ones that get it, sorry that they all do not!

I enjoy photos

I bring them with me to hospitals or camp, or look at them on my phone, as I take pics of pics! haha

I also have a keychain with the word faith etched into it,really pretty. Given to me by my best friends son (who is seven and convinced that we're getting married)