View Full Version : Wow--Water and Movement, What a Concept!

04-15-2009, 03:54 AM
I just totally enjoyed my first day of aquatic physical therapy. The PT said, "You haven't stopped smiling the whole time." I couldn't believe how much I could do in the water without pain, without having to guard myself to keep from falling, and without being aware of every movement. It's been 4 yrs since I could even walk my dogs a short distance. I knew I was pretty weak, but had truly forgotten what it was like to move in so many directions. And I didn't realize how weak I was, that even moving in water was difficult.

Getting out was a different matter altogether. (WHO increased the earth's gravitational field at 10:30 am today?) I can't believe that pre-Wegs I could swim for hours and then just spring up out of the pool like it was nothing to transition to land.

Thank goodness my JHU rheumy said to do this-- :)

04-15-2009, 05:58 AM
That's great news Sangye!
So glad you have found some relief from the physical effects - I used to really enjoy an aqua aerobics class as the exercises felt so easy at the time. Then the day after you started to feel just how hard you worked the day before.
I hope you don't wake up too stiff in the morning!

04-15-2009, 06:49 AM
This was as lightweight as it gets, so I hope I won't be sore, either!

It was pretty hard to do the bathing suit thing, I have to say. I had to really talk myself into packing myself into it like a sausage and actually walking out to the pool. The PT and therapy pool are in a huge fitness gym, so I was surrounded by model-thin, muscular, healthy people. It was so strange to be back in that world--totally foreign.

It made me sadder for those of you who are so much younger (I'm 45) and dealing with all this. I have way better self-esteem than in my 20's, but it took all my courage to get out to that pool wearing pred and Wegs.

04-15-2009, 07:59 AM
I've always battled with bathing suits as I've always been quite overweight so always hid a bathing suit under men's swim shorts and a t-shirt if I could get away with it. However the WG has made my self confidence sink to an all time low - I've always been a bit embarrassed when wobbling around on gym equipment but figured people could see I was trying to do something about my size and appearance.
Throw in moon face, buffalo hump, hair growing in bizarre places, stretch marks and it sure makes you think twice before undressing in front of other people. Hell I don't even want my partner looking too closely!

04-15-2009, 11:38 AM
I always loved the water (pre-wegs)
Don't know if I could see myself getting into a bathing suit yet.
Remember awhile back we were questioning if anyone had met another weggie face to face?
On Easter Sunday, after church, I met a young lady (mid 20's) who was diagnosed almost a year ago.
We hugged, cried and compared meds. It was a wonderful feeling to meet someone face to face. We plan on getting together soon to talk.
Hope everyone is doing well this day. It's a good feeling too to know I have internet friends to talk to also. Thank you.
p.s. sangye....Yesterday I saw a dermy and they did a biopsy on my leg.
Wow! I haven't had this kind of pain for awhile. I still have to get a CT scan of chest and then Dr's will decide where I'm at right now. More Prednisone maybe? Just when I started to lose a few pounds, it starts all over again.:eek:

04-15-2009, 11:50 AM
I always loved the water (pre-wegs)
Don't know if I could see myself getting into a bathing suit yet.
If you can, it was SO worth it. I miss the water and just having fun with this body. I hadn't realized I only had negative feelings about it-- it's been the source of so much pain and dread. Besides, once I was in the water, no one could see anything but my head.

We hugged, cried and compared meds.
I've said it before, and I'll say it again : Hallmark needs to make a card for Wegs.

I still have to get a CT scan of chest and then Dr's will decide where I'm at right now. More Prednisone maybe? Just when I started to lose a few pounds, it starts all over again.:eek:
You never know. I was certain my rheumy was going to increase my Cellcept a few weeks ago, but he said my Wegs was behaving itself and my symptoms were due more to damage and being deconditioned. Sometimes they can increase the immunosuppressant instead of the pred, if they need to.

04-15-2009, 05:32 PM
The comming back of pain is one bad point in comming off the pred. I am going down to 25 tomorrow. Already I feel me muscles protest when typing or even folding bedsheets. I guess conditining and just waiting for my body to wean itself will be a slower process than I thought. In just over 1 and 1/2 years I went from size 10 bathing suit to 16, when I went on my cruise holidays, I just thought - nobody knows me so what the heck and just enjoyed myself. In 3 week I will be going over to Poland and that is giving me a lot of sleepless nights. I want to lose weight faaaast, each morning I say OK today I wil not pig out and eat reasonable portions - only it doesn't work that way, my stomach is simply bigger than my mouth and I have to resign myself that its not going to happen so I'll just have to adjust and keep repeating to all - this is all due to prednisone.

Ha anyone been hypnotised. My husban's collegues wife has been studying hypnotism for a year and asked me to be one of her subject. I alwas suspected that i would be hard to put under and I was right. I tried to relax, realy I did, but my mind just would not let go. I kept wanting to open my eyes, but didn't want to make her feel bad, than I had a nose ithc, hand itch etc. She will try next wee again. will keep you posted.

04-15-2009, 11:49 PM
Hi Jolanta,
I think there should be a t-shirt like the ones pregnant women wear-- a giant arrow pointing to the baby, that says something like "Work in Progress." Maybe ours could have a bunch of arrows pointing to the triple chin, buffalo hump, big belly, etc... that says "Prednisone in Progress." :D

I've never been hypnotized outright, but a hypnotherapist friend of mine helped me enormously by making me a CD for self-hypnosis. I've had terrible dentist experiences (novocaine hasn't worked for 20 yrs) which left me absolutely terrified of getting anything done. At one point I had to have dental work and literally couldn't think of doing it without almost fainting. Seriously. She had me listen to the CD several times, and right before I went in. Worked like a charm. I never felt hypnotized, just relaxed and "neutral." And, the thing healed faster than the oral surgeon ever dreamed it would, even with pred and chemo.

04-16-2009, 01:49 AM
original quote by Sangye

"wearing pred and Wegs."

I am so happy for you Sangye! Water is a wonderful tool and I wish you continued success.

I love your quote "wearing pred and wegs". Lately, I have been worrying about getting into my swimsuit with this pred body.
I really thought my pred face was getting better, until yesterday, when I took my dogs to the vet and she asked me if I was on pred??? Darn! I was hoping she didn't notice.

I am age 50 and not as worried about my appearance as I was when I was younger, BUT there is the appearance of what I WANT to look like in reality.
Best of Luck girls with your swimsuit issues. Just remember, we are in this together! Go Pred and Wegs!
Lisa Coffeelover

04-16-2009, 02:04 AM
Yeah, and I have these horrible big scars from granulomas on my legs. The PT I went to a few weeks ago (I didn't go back) actually gasped when she saw them.

And for whatever reason, about 1.5 yrs after I stopped pred, I got bizarre hair growth on my lower legs. It's only along the front of my shins--about 3 inches wide-- and the hair is thick and over 1 inch long! Like someone glued on a patch of fake fur. Even my Wegs docs don't really know what happened. I can't really shave my legs because any tiny cut sprouts into a granuloma. And if they open again, I can't go in the pool. So I sort of shaved it down. Well, no one can see it once I'm in the pool.

04-16-2009, 06:02 PM
Sangye, now that is a thought, t-shirt sounds great:) My husband used to play the relaxation tape at night to fall asleap, it worked for him but never on me. I have a too much of an analytical brain;

04-17-2009, 12:57 AM
What's that saying about watching or reading fiction--"The willing suspension of disbelief." I guess it's just that tiny crack in the door that says "I know this is made up, I know I can outreason it, but I'm gonna just let myself pretend for a bit."

I'm very analytical as well, but I've got an imagination like a toddler.

04-19-2009, 12:40 PM
I got bizarre hair growth on my lower legs. It's only along the front of my shins--about 3 inches wide-- and the hair is thick and over 1 inch long! Like someone glued on a patch of fake fur.

If you dyed it blue or green then it'd be like you meant to grow it like that. You could start a new fashion trend of shin-style cuts.

When I was on Cytoxan, the only other place I lost hair besides my head was on my calves. Same amount in the same place on each leg.

Cindy M
04-24-2009, 09:21 AM
You guys and gals are too funny. Before my WG diagnosis my hair was thinning on top. (not a good look for a female). I guess the one positive thing with preds is my hair is now a little thicker looking, not sure what will happen when I am off the preds. But yes it is amazing where hair can grow.

Good for you for getting into the water. I know the feeling of gravity when getting out. It is not a comforting feeling.