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JanEE
Member in Phase 3
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Posted: Thu Oct 9th, 2008 16:56 |
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Barb, this is thrilling news. I could picture you the whole time I was reading about it. I could even feel the undercurrent (ooh, a pun) of joy you must have been feeling as you gingerly walked through the water. It must have been better than walking on the moon. I hope tomorrow is an even better day for you as you try it again. Best of everything continuing to come your way.
Hugs,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 31 |
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Posted: Thu Oct 9th, 2008 21:17 |
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OMG!!!!
That is so awesome Barb!!!! 
YEAAAAAAA!
You have made my day! YOU GO GIRL!
Do a round about for me!
Love and happiness to you
Watching you closely
XOXO
Karon
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PTSD RA CFS Chron Inflam Disease| Naproxen Tramadol| 125D73 25D20(May08)| 25D14.4(Jul08)| PH1-Apr08| Lowlux Home Work NoIRS NoSun covered up| Ph2-Aug08
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Millie
Member in Phase 2
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
| Posts: | 169 |
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Posted: Thu Oct 9th, 2008 22:21 |
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| Barb, What a great experience. I hope it will get easier each time you go. I don't know how you do it sometimes. You are an inspiration to all of us. Millie
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sarcoidosis/pulmonary, muscles, HTN, MVP, PHTN, Hx GI obstruction, melonoma, Ph1,1/07, MPh2 3/07, Ph2 9/07. verapamil, lisinopril, probiotics, vicodin/motrin,NoIRS D25-5 3/07,7/08-VitD-11, D2-4,D3-11.
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BARNEY
Member in Phase 3
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Posted: Thu Oct 9th, 2008 23:49 |
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Barb
If I were there with you........I would shoot off fireworks for you!!!
HANG IN THERE, WE WILL MAKE IT!!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Deb Grabetz
Member in Phase 2
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Posted: Fri Oct 10th, 2008 12:54 |
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YAYYYYYYYY!!!!!!!
 Yes, Barb what a wonderful experience for You and DH!!!!! Every step you take forward.....brings joy to my heart!!!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sat Oct 11th, 2008 01:27 |
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Thank you to All.. You have supported me with emails, private messages, thoughts and prayers, and other ways.. 
as well as .... Gifts and Flowers and cards while I was in Hospital 1 year ago.
I have today been able to tidy some of my desk and look at your cards and the messages DH wrote out to bring to me in hospital.
Every one of you so precious to me - have all helped to get me to here.
Thank you.
and I am able to listen to music while I am doing it. My Best, as always, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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patrickburke
Member Advocate
| Joined: | Mon Jul 12th, 2004 |
| Location: | United Kingdom |
| Posts: | 399 |
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Posted: Sat Oct 11th, 2008 13:08 |
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WoooooHooooo Barb, I can't believe I've missed all of this !!!!
I am totally overjoyed that this is happening for you.
I love it.
Music, swimming, tidying up.......................awesome. Simply awesome.
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; still covered since 6/04; Noirs ended 6/07; Minimal light avoidance.
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Aunt Diana
Member Advocate
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Posted: Sun Oct 12th, 2008 01:56 |
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| Wonderful news!! Fantastic!! No words can really express the emotion...God Bless You Barb!!
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Toni D
Member Advocate
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Posted: Sun Oct 12th, 2008 09:54 |
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| Barb, I've just read your wonderful praise report. I am so very happy for you!
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 1,25D=38 07/07 25D=4| BeniQ6H 09/27/05| ModPh2 07/06; Ph 2 09/07|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Mon Oct 13th, 2008 03:07 |
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Thank you All..
Mobilisation: Pool times/experience so far:
Wednesday afternoon: dressmaker calls.. pool clothes are ready.
Thursday 9th Oct: first day. 10 mins
Friday: 5 mins.. stopped because of chest pressure
Saturday: tidied papers at home. first time in a very long time.
Sunday: woke muscle sore... 15 mins at pool.
Monday/today: 1/2 hour.. a lot of lower back pain to start, so took another Benicar 40mg + another 1 panadol and inbetween walking the pool, sat with my back to the warm water coming into the pool, just slow 'kicking' my legs.
-If I put my chest underwater there is too much pressure on it.
-and if I move my arms too much, >> chest pressure.
-I cover up in the car and wear my NoIRs. The pool is indoors with light coming in, but I dont wear sunscreen, and seem to be ok so far.
-I have a lot of body pain, and hard to move to get in and out of car and wheelchair ... but worth it.
Taking Quercetin 250mg x 4 per day. panadol for pain 1 at a time as needed. Benicar 40mg as often as required. and resting as required, in the dark. is managing any after effects.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Tue Oct 14th, 2008 07:04 |
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Tuesday 14th October 4pm:
I have just come home from the indoor pool. Water is like magic.
35 mins. I walked 500 metres (550 yards) broken into 100 metre blocks with a sit inbetween, at a 30 deg warm water inlet onto my R hip lower back to loosen it again for walking the next block. While sitting I slow kick my legs and press up down on the flotation noodle. this works my arm muscles and upper body muscles.
I hold a flotation noodle down while walking as well so that it is like weights in reverse. I can feel this in my arms and lower abdominal muscles.
I was able to 'walk' the 20 metres instead of the wheelchair, out to the car to come home.
-tailbone is sore.
-no chest pressure with change to arm work.
-being able to walk in the pool is great.
-getting in and out of the car is very hard to do.. so lets hope that improves very soon
-overall, using less meds to manage the pain thru the day. Benicar not usually more than Q4H now + some panadol.
-still take an extra panadol and an extra Benicar before I start.
-hair: nothing to do with the pool: is now so thick and tighter curls that I have had to go back to my older type firm hairbrush to get thru it.
-all is going well.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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BARNEY
Member in Phase 3
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Posted: Tue Oct 14th, 2008 15:22 |
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FANTASTIC........BARB!!!!!!!!!!!!!!!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Oct 15th, 2008 00:12 |
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On Muscles and atrophy due to lack of use:
Certain Members of my Family would tell me in the time that I was almost bedridden pre MP, that if I didnt get some exercise that my muscles would atrophy.
I would always say that mine never did. And I knew that because every now and then I would get a flash in the pan of energy when I would be able to get up out of my bed and clean the windows. yes... clean the windows.. I would be so pleased to be able to do something, this was my first choice (and we lived way out of town where in fact, I was the only person who would care to take note of them.)
This 'jump up and do something time' was good in that it would be a good reference for me when unable to get up again, and unable to exercise - that
1. I wasnt lazy ... that I had indeed done something as soon as I possibly could do.
2. my muscles didnt atrophy - they were there ready and willing, with no exercise inbetween.
And, I am reminded of the latter now with the water walking. although I must add that I dont think of this as a flash in the pan this time (ok I admit I didnt back then either)
I gave up worrying about the former years ago
I countered the first barrage of after effect by using the meds and have been ok since with extra rest and now I have only had the amount of muscle soreness that extra Benicar and a few panadol, 1 at a time can manage.
All interesting observation.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 216 |
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Posted: Wed Oct 15th, 2008 05:18 |
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Barb your progress is fantastic and I am so thrilled for you. I can imagine you enjoying
The warmth and movement in the water. Such great news for all of us,
Take care, Lynn.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Oct 15th, 2008 06:50 |
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Thank you All..
40 minutes today. walked 750 metres pushing the flotation noodle down. stops every 50 metres, and leaned back against side of pool for relief. no warm water inlet for R lower back and hip pain today as we were sent to a different part of the pool. R shin splint type pain stopped me. Took extra Benicar, panadol and a Quercetin before going. lets hope I can soon start to function on land as well.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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| Posts: | 19444 |
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Posted: Thu Oct 16th, 2008 04:27 |
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I was feeling tired last night and today. I still dont sleep much at night and I dont want to overdo. I didnt know whether to go or not. - decided that I would hate to not go and the day would drag.
50 mins today, with stops at the warm water inlet - great to loosen the R hip/lower back pain which builds while I am walking.
I dont feel as if I have done anything even after all that. The water is truly a magic place to work. - the meds take care of the later overall muscle soreness.
I long for it to be easier to get in and out of the car.
My plan is that when I can walk and get in and out of the car with ease, that I am going to have driving lessons before driving again because it has been a long time since I have driven.
I think that my ankles may look slightly less pufft. something should be happening??
Thank you and all best to All ... Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Oct 17th, 2008 01:44 |
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Muscle sore thru the night and this morning. eased with Benicar and panadol.
60 mins today, with less able to use the warm water inlet to loosen the R hip/lower back pain which builds while I am walking. so stops to lean my back against the pool wall, and walking backwards also seem to help.
My L arm/shoulder are particularly sore/ inhibited, so I exercise this also. hands remain painful and unable to form a fist.
L calf a bit crampy again today, so took an extra magnesium.
The difficulty of getting in and out of the car hinders me from going out other than to the pool.. otherwise I'd be gone.... 
Thank you and all best to All ... Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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PaulT
Member in Phase 3
| Joined: | Fri Feb 25th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 290 |
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Posted: Fri Oct 17th, 2008 02:15 |
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| going good Barb Last edited on Fri Oct 17th, 2008 02:17 by PaulT
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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LH1953
Member in Phase 3
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Posted: Fri Oct 17th, 2008 07:17 |
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OK, see what I have missed cause I barely get on computer. YOU go girl. As I always tell you, you are my Rock, I could have never done the MP the first 2 years without you. AND now, it is LONG overdue, Barb, its your turn to move forward on the MP journey. It is the little stuff we appreciate so much that others take for granted.
One day, one step, one moment at a time. It is our strides on our decent days that keep us going. You enjoy those moments. There is nothing like the feel of pool water rushing over ones body. I'm so very happy for you.
Years ago, I used to take the "noodle" and put it in between my legs, like a horse and walk the length of the pool. My feet would not touch bottom. I also got a small inner tube and would rest my head inside the inner circle and "hang" my body straight. This took so much pressure off my spine.
Do they sell the belt that you can put around your waist to keep you afloat? I also used this to "walk" in the pool. It leaves you weightless, cause it bobs you, and your feet don't touch the pool's bottom (when you are in the deep end). Like being suspended in air. Helps to work your muscles without the pressure.
All my love and KEEP on going. OX, Lori
Last edited on Fri Oct 17th, 2008 07:22 by LH1953
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Martha
Health Professional
| Joined: | Mon Aug 23rd, 2004 |
| Location: | Utah USA |
| Posts: | 183 |
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Posted: Fri Oct 17th, 2008 15:50 |
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I'm so happy for you Barb!!!! Keep up the good work
Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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