Good Grief

[morgan617]

The in home physical therapist came today. I did ten little weenie leg lifts and went down like a bag of rocks. How utterly mortifying.

I guess that gives people an idea of how I've been feeling. He said he would try to find some weenier stuff, but it was going to be hard. Gee that made me feel even better...

This has been a really rough couple of months or 5. I read and lurk, but it's just been really hard to sit and write. I'm sorry so many of you are feeling bad, and sorry I haven't responded, but just not really up to it right now. Just wanted you to know I was thinking of you all. You have always been supportive of me, and I can't seem to return the support right now. I will try harder, but can't promise anything....onthefloormorgan

[dizzygirl]

oh my morgan!

i'm so sorry that you are feeling so crappy!.. I hope that the PT person can work something out for you.. hang in there and dont worry abut us.. we know you LOVE US!!

sending you lots of CYBER HUGS!

dizz

Edited December 29, 2005 by dizzygirl

[taylortotmom]

I thought about you tonight and wondered how you have been. Thanks for checking in and take care of yourself!

Carmen

PS I'm wide awake at 1:00 am (JUST A LITTLE STRESSED!!!!)

[Jacquie802]

Hi Morgan, miss seeing your posts here. Don't worry about us right now, take care of yourself. I hope your PT finds some exercises that work for you. It's going to be hard, but we know you can do it!!!!! Goodluck!

[MightyMouse]

Morgan, I don't know if makes you feel any better, but last year when I started physical therapy, I also fainted on the first visit, and after that, they wouldn't let me do any exercises standing or sitting up--for the next few months, I had to do my entire workout lying on the pt table! I since changed practices, and also started there doing everything either on the floor or table... and over a the past few months, have graduated to being able to do several seated exercises and 2 standing exercises.

I hope that you see improvements over time and are able to be more functional as a result of pt. nina

[mom4cem]

Tiny steps, that's not a bad way to start. From there on, you just build on that. Remember how it takes infants to learn to sit up,crawl and walk. When you've been down for so long keep in mind that it is just like starting all over again..

Glad to hear from you. Keep up the good work. Looking forward to hearing some positive improvements from you with your pt.

[lalalisa]

Morgan,

I'm so sorry you are feeling so horribly right now. I hope this difficult season will pass quickly for you. I'm sure it was emotionally difficult to pass out as you began physical therapy - it's during these times when the reality of this illness sets in. I hope you get stronger little by little as you go through P.T.

Hang in here,

Lisa

[gwen]

Oh I'm so sorry to hear of the PT problem!!. But I know there are things they can do. Every day do just one more exercise(laying down) and gradually build up. Glad you checked in, but concentrate on feeling better. Prayers are with you!:-)

[Sophia3]

Morgan

That so stinks you had such a bad reaction to PT. Did they have you lying down flat on side head down, or with head propped up? Did you have leg weights? If so, I would skip them next time.

You have had SO MUCH going on physically and emotionally with you in recent weeks, I hope you get a break soon. and I know you have to be running out of patience and at times, hope.

This illness is so frustrating for those of us that CAN'T 'always push' to be normal. No matter how strong our spirit, we JUST CAN'T do things. But you are attempting PT and that is a start. It would be intersting to see your BP and HR while exercising. And I also know sometimes even those that are debilitated can "push" and other days, cannot. It would be nice to not have so much on your mind emotionally and do try PT on your own in safe environment.

I started leg lifts in bed a couple weeks ago and have graduated to the floor and ankle weights. But I take my time and rest in between and can now do three sets.

I hope they gave you stuff to try in bed. You'd be SURPRISED what can be done in one's bed. EXERCISING I mean, lol..

I thought I had seen MAJOR improvement in the CoQ10 but it turned out, it was just a good week (for ME anyway!) so it's tough to see what's our trigger, what's our final straw, etc. Sounds like the weenie leg lifts may have been your last straw.

Just distract yourself as much as possible until you get the final results from the Texas tests. And I hope your doctor visit next week can address SOMETHING to help you feel better. You be kind to yourself in the next few days, Morgan and I am thinking of you and yours.

xoxo

Sophia

P.S. Found this link on exercise and fainting and other faints.

I realize many of us here may know this but it may be a good refresher read or helpful to newbies.

http://www.merck.com/mmhe/sec03/ch023/ch023b.html

Not helpful to you Morgan, being the savvy nurse person you are, but I wanted to post SOMETHING to help and I can't email brownies.

Edited December 29, 2005 by Sophia3

[Dizzy Dame]

Morgan,

How awful! I felt like I was going to pass out when I started P.T. but never did, that must have been incredibly annoying (understatement?).

Keep up with it though, after a month of P.T. I began really improving (that is before the recent crash that's left me sicker than ever) but, yes, I did improve with P.T.

Keep us updated on how it goes

Cheers,

Lauren

[corina]

I'm sorry to hear about the fainting morgan, but please, keep trying!!!!

corina

[dawn]

Morgan,

That *****!!!!!! Do you do isometric exercises. My doctor had me start doing those about 10 years ago, especially right before I get vertical. I squeeze to the count of 10, release, then repeat about 5 times. I also do alot of calf stretches before I get up.

I got an oxycycle for Christmas, you just set it in front of the couch and pedal, it has a motor so you really don't use much energy. You can have it go different speeds. I wonder if you would be able to do that. Maybe the PT has one. It's a little thing with a handle to carry, even the pedals fold up. I feel pathetic, I used to be able run 3 miles and now I pedal with a motor.

Mayo always assured me that when you hit menopause you will feel better. NOT.

I think of you often.

Hugs

Dawn

PS How's the puppy?????????????????

[morgan617]

Well, I made it without fainting. We sat up and I got all sweaty and lots of tremors, but no fainting..whew

But get this. The guy has been all over the web finding out all he can about pots, so he can better help me!!!!! I was shocked. He was talking proximal versus distal setting off of symptoms and all kinds of stuff. He says he finds me fascinating. Too bad doctors don't feel that way!!!!!!

Still waiting to hear on my baby girl, which is not helping. She was vomiting last night so I spent the whole night bawling, which really helps our little systems doesn't it. Hubs was glad they didn't call because it was my birthday, but the waiting is a real killer too.

We'll see how it goes. Am talking to my pcp next week about a scooter, as I feel this is going to be a loooong hard road. As far as isometric and stuff, that's why I'm getting p.t. to figure out what I can and can't do. I do stuff at night and in the am before I get up, but it doesn't seem to make a difference, so maybe I'm doing the wrong stuff...I'm a duh about exercise.....legcrampmorgan

[AJVDK]

Morgan,

I hope things start getting better for you. Just tell yourself one day at a time. I know it's better said then done, but good luck, I turly hope things get better for you soon! Good luck!!

Amy

[Sophia3]

Morgan,

A thump on the head to the PT for not thinking to have you lying down the first time, BUT snaps to him for BEING INTERESTED IN LEARNING about POTS and OI.

I am glad you didn't faint. It's the little things, you know.

xoxo

Sophia

[Ernie]

Hi Morgan,

I hope you are feeling better today. What a yukkie feeling.

[calypso]

Morgan,

Do you watch "SpongeBob SquarePants"? There's this episode where he wants to hang out at this club for tough guys -- I can't remember the name of it -- but is instead sent to the Weenie Hut Jr. club. Every time you say weenie, I think of this!

Anyway, remember that PT can be a long road and improvement comes very slowly. Take your time and pace yourself. You CAN do this! You WILL do this!

Take care.

amy

[morgan617]

I've never watched it, but I am sure I belong there!!! lol

[DancingLight]

Morgan,

WAIT A MINUTE!!!!????? IT WAS YOUR BIRTHDAY ON THE 30TH OR THE 29th????? you aren't on the calendar and i haven't been reading any posts and i just saw your little 'it was my birthday' thing and well, i feel terribly that we missed it.

i wanted to check in and hear about chloe and the weenie progress. i am a bit weenie on this end of the country too, if it helps any, but i know it doesn't. we all just want to feel better.

sooooo........................................................most importantly, use wareagle's theory, that you get younger each year instead of older....

and i want to wish myweeniemom a VERY HAPPY BELATED BIRTHDAY! you are a foundation, a rock, a source of inspiration, knowlege, compassion, humor, love and so much more to myself and many others on this board. i feel terribly that we missed your bday! but, i don't think it is on the calendar which means sneaky you didn't post your bday date!

lots of love...i'm fading out on the ambien here, but when i saw that it was your bday!!!! i hope so much for you morgan that you will find answers and the help you need. i hope that for all of us who are suffering and struggling right now. i hope for it so badly my heart aches.

and i hope that chloe will be okay...poor thing!

love, em

[DancingLight]

morgan...

it's friday night and we're without JOA maybe i should have told my PCP THAT was my problem this year when he gave me crap yesterday?????? i know, warped sense of humor...

i wanted to check in and see how your baby is doing???? and how YOU are doing...

em