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Update On Rehab


corina
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i haven't been active at the board for some weeks now, i think, and although reading, i haven't been able to welcome some (okay: most) of the newbies which i regret. so here's my welcome to all of you!!!

i am in rehab now for 7 weeks and boy, do i LIKE it. it took me quite some time (and a lot of effort) to come this far and after day one i was so sick that i had to stay in bed for 3 days afterwards, but right now i am very much looking forward to the days (mondays and tuesdays) that i can go.

i have a very sweet pt who works with me and next to trying exercises she also SWIMS with me. and that really is the joy of my life!!!! the down side was, that physically i can't swim anymore (which was a big disappointment for me). but being in the water (with all kind of stuff that keeps my body floating) is sooooo GREAT!!!! i can float on my back and swim with my arms for some time, than i have to relax (while the therapist is pulling me gently through the pool) and when i think i am well enough again i do the arms again. the strange thing is that as soon as i try to use my legs (we call it flippering, hope you know what i mean), the pots strikes hard, so i have decided NOT to try anymore. i do not understand wy it happens but it just does. coming out of the water (wheelchair on elevator) is difficult too. after swimming i have very much trouble being in an upright position: i feel very much like fainting but it doesn't get "black". i mean that i can still see what is happening but can't acutally "do" anything. it is a very good feeling to know that i am safe though, as my pt makes sure that i will get in the wheelchair or the stretcher thing (where they lift you out of the water supine).

i also see an ergotherapist who is very sweet as well and helps me with adjustments to my scooter and a social worker who helps me with paperwork and dealing with my frustrations (as i always want to go beyond my limits).

another very good help is the girdle i've leant. i don't know the english word for it right now (brain fog . . .) but it has to be around the waist and then it tightens and helps A LOT with keeping the bp up. that in itself gave me more standing time which is very good of course!!!

well, i hope you guys get an idea of what i'm doing and how very much i enjoy it as it makes me feel so good to know that i'm working on myself. i will be around as much as i can (and i AM reading as much as i can) but can't answer as much as i would like.

i do hope that you are all as well as possible and thhat you will be able to enjoy the summer!!!

corina : )

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Hello corina,

nice to hear that you enjoy your rehab! I went to one myself last year. And even when all the appointments (i had to go to every day) really made me feel sick sometimes, i did learn a lot about how far i can go before i get really symptomatic. It did give me a lot of convidence back!

I wish you all the best and a lot of good experiences and much fun as well:-)

carinara

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Guest tearose

You go girl!

I remember you talking about swimming and it made me wish to swim. I just never got around to buying a wetsuit. I get too cold in the water and it caused nerve pain. Maybe I'll look into that wetsuit now that I hear how well and happy you sound.

You go twice a week? How long are you in the water for?

Do you ever shiver with chills? Sorry for all the questions but I think the water would be great for me if I could work out the temperature change.

best regards,

tearose

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Hi Corina,

Thanks for sharing about how rehab is going! I'm glad to hear that you are enjoying it and that you have such nice people to help you. I hope that you start to see some improvements.

Keep on with the great work!

Rachel

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thanks for your encouragements guys!

tea, i go to rehab twice a week but swimming is only on mondays. although i say "only" i do know that for me that is enough (there's the battle between my head/heart and my body again :) ). the water is warmer than usual which helps me tremendously as i am cold most of the time too. still, coming out of the water, i am always shivering and very cold which makes that i don't want to be showered as that is much too cold for me. there are really lovely ladies who help to get me dry and in my clothes again (on mondays i wear special things that can be put on easily). i am in the water from 10 to 30 minutes (30 is the max) and i love every second of it!!!

i was wondering tea, i think you are one of us who wears a tight thing around the waist (can you let me know the english word for it? i am breaking my brains but can't remember). do you have a special brand? have you tried different ones? i will see an orthopeadic instrument maker this coming wednesday to find out which one would suit me best.

hope i asnwered your questions and even thought of some questions for you too :( i think a wetsuit could be the thing for you, when swimming into warmer water a normal bathing suit would be sufficient.

take care,

corina :)

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Guest tearose

Thanks for encouraging me corina.

Yes, yes I do wear "compression garments" I use several different styles depending on how I am managing. If I am very weak I will use a garment over my abdomen. I have an abdominal binder, compression shorts (like an old fashioned girdle) and a full torso compression garment (this goes from above the knee to just under my heartrate strap. Here is a website from the brand I use most.

http://www.designveronique.com/

The garment plus my compression hose are my main treatment to live every day. I hope if you try a garment you feel stronger too. Did you need any more information?

Will you graduate from "rehab" soon or can you continue going? I think here we are encouraged to do exercise on our own eventually.

best regards,

tearose

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Oh Corina!

Reading this post made me sooooo happy!

You have so much strength and courage and fought so hard for this....what I am most happy for is that it has been worth the fight!

You are getting such wonderful careful care and rehab. Such a great integrated approach that really meets you where YOU are and doesn't try to fit you into a box.

I think being in the water is such a wonderful feeling, but I never could handle it once I got out (didn't have all of the assistance that you do!) so I am glad you are getting to experience it.

Congratulations on making it to rehab after fighting so hard, and I commend you for your hard, hard work through the rehab process.

You really are such an inspiration and strong spirit!

BTW, I think that wearing abdominal compression is a something that somehow gets missed or doesnt' get as much attention as perhaps it 'should'. We pay a lot of attention to the importance/helpfulness of compression hose, but not as much to abdominal compression.

My ANS doc really pushed me to wear abdominal compression b/c so much of our blood pooling actually occurs in our abdomen (not just our legs) and the studies are showing that.

So, I did try an abdominal binder but it would never stay in place.

I also tried a brand called Ragu (I think? that tearose recommended a long time ago)...I haven't tried the Veronique brand as that is one she hadn't mentioned earlier when I was looking. She's tried a lot of brands though!

I wear what is called a high waist brief over top of my compression hose. My compression hose compress all the way to the abdomen, and then I pu the girdle on. If you can't get hose that compress to the waist, then you can wear what tearose described which is like the high waist brief, but compresses the upper leg also.

I wear the Sigvaris brand of hose b/c they are the only brand I have found that compresses to the waist. Most brands stop compressing at the upper thigh which leaves me with a pooling of blood b/w wear the hose stop compressing and the girdle starts compressing.

I wear something called lipo in a box and I LOVE them: www.lipoinabox.com. Love them! Did I say, I love them!?

I hope you will find yourself feeling stronger (in spirit and in body) every day!

Love,

Emily

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thnak you so much tea and em, for the information you gave me. it is very helpful, i will print the info and bring it to my appointment next week. because of slow heartrate (which of course nobody understands but tehy all worry) i am stuck in bed/chair and couldn't make it this week. well, it gives me some more time to investigate on compression stuff. thanks again dear friends,

corina : )

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