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Deb Grabetz
Advocate
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Posted: Thu Jul 24th, 2008 14:38 |
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I've been wondering about this...I have been avoiding visiting people in hospitals ever since starting the MP.
Is this necessary? Thanks! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Thu Jul 24th, 2008 19:01 |
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*chuckles* Sorry... are you serious or joking, 'cause I just left the quotes section and so your question strikes my funny bone and I don't want to be disrespectful with my answer.
Serious? No. I can't see why you couldn't as long as you could take the overhead lights. If you can go to the mall, you can go to the hospital. It's the only place I get out to these days when I go for blood and urine tests. I call it an Outting With My Hubbie.
Not serious? Yes. Watching all those people using non-MP drugs and knowing their prognosis odds could trigger spontanious bouts of weeping. Last edited on Thu Jul 24th, 2008 19:03 by Juanita
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Michele MBK
Member in Phase 2
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Posted: Thu Jul 24th, 2008 19:21 |
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Hi Deb,
Timely question for me. I know m. pneumonia is part of my pea soup. We were planning on visiting a relative last week when we were travelling across the country. However, he was moved to an intensive care unit with pneumonia. He only has one lung and is a quadraplegic after being hit on his way to work last fall by a drunk driver. 
I really wanted to visit him and was very worried about my family being exposed to pneumonia. So even though the nurses said it was unnecessary, my whole family wore masks that we requested at the nurses desk. We slathered our hands up before and after with the sterilizing solution hanging from the wall in the ICU hallway.
I am really glad we visited him. We stayed with him for 1 1/2 hours and the lights didn't bug me. I was able to stand by his bed the whole time. He was thrilled we stopped. I only wish we lived closer so we could visit him on a regular basis. 
Having been a confirmed germophobe for some years now, I do wonder about the safety of all parties involved. Those with Th1 catching more bugs and/or passing something along to a person who doesn't need any more.
Since I'm going back into the collegiate petri dish soon,  I do wonder if there are any precautions necessary.
Michele
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RA 125D30 D2516 Ambien Elavil Vicodin low lux home NoIRS cover up Ph1May08
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 368 |
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Posted: Thu Jul 24th, 2008 21:00 |
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A confirmed germaphobe. Wow, you could come visit our house any day, Michele. MP and aware of contaminents. Cool. Three of us in my family deal with germaphobia so I understand the emotional quality to your question. Plus, our youngest is going to college this Fall as well.
What we've noticed since starting the MP, and the youngest was working in the town library back then, was that our immune systems became immediately stronger. We wash our hands and take precautions always, but virus' still arrive. This last year, none of us have had the flu, only one or two colds that could also have been IPs.
We aren't contagious and what others have can't hurt us in terms of Th1 as the bacteria is slow to replicate and we are already on the MP to deal with that.
Here is a link to the FAQ- Am I Contagious? http://www.marshallprotocol.com/forum32/3811.html
I am sorry about your relative. That's a tough life situation to be put in, isn't it? I'm glad that you were able to spend some time with him.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Deb Grabetz
Advocate
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Posted: Thu Jul 24th, 2008 21:49 |
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Juanita wrote: *chuckles* Sorry... are you serious or joking, 'cause I just left the quotes section and so your question strikes my funny bone and I don't want to be disrespectful with my answer.
Yes, I'm serious! I have my blood draws done at a tiny lab down the street. I have avoided going to the hospital for any reason now for almost a year! I have tried not to offend anyone by staying away but seriously I think I have some paranoia now about the place. I flared the month that we were spending days and nights there with my husband's uncle who passed away, he had pneumonia and also acquired MRSA and other complications. We live in a small town of 22,000, so a small hospital also. I'm just not sure how well they did advising us of the MRSA situation. So I was just a little curious how others felt about this!
Last edited on Fri Jul 25th, 2008 01:51 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Juanita
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Posted: Thu Jul 24th, 2008 22:24 |
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I'm sorry about your husband, Deb. No wonder hospitals make you feel uncomfortable!
I'm coming from a unique place (maybe) as two of my family members work in EMS. So not only do I hear what virus or illness is going around, my two are jumping into the back of ambulances to go into sick people's homes and then into the hospitals. Frankly, that's bad enough as a germaphobe, but, just from a practical position.... hmmm.
But what we've found is that as long as you follow universal precaution guidelines, it's okay unless you specifically have a compromised immune system. None of the wild fire viruses have come into our house. And my two get puked on regularly.
Now, we found that the MP gave us stronger immune systems and I don't know if that is mainstream for our community. It would be interesting to take a poll, eh? But we didn't have to even fight off something because the protocol of constant hand washing, don't touch if you don't have to, wear a paper mask if you are concerned, change your exposed clothing, shower afterwards, etc worked really well.
It won't help either that neuro IPs can include paranoia, worry and anxiety.  You have my compassion, Deb.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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Deb Grabetz
Advocate
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Posted: Fri Jul 25th, 2008 01:57 |
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Oh goodness Juanita, I left out my husband'S UNCLE...good Lord, Tom is still alive and well. Thank god, cuz he is my "sugar Daddy", I call him that all the time because he is working and I'm not....He likes being a "sugar Daddy" for a change. I wondered why you were asking me about Tom and I corrected my post...thank you, thank you!!! Oh you have me laughing again, I have laughed more today on this site than I have in awhile...thank you very much ppl!
My neuro is c-r-a-z-y today and I am ever so tired, so my thought process is not quite right...now I understand why ppl post on here and then say they delete them...no doubt!!
Thank you ever so much for the compassion...I'll use it towards something else,eh?
hahahahah! Thanks for your input, I will keep this in mind.
Last edited on Fri Jul 25th, 2008 02:00 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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MAJSFLAS
Health Professional
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Posted: Sat Jul 26th, 2008 09:10 |
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| Questions: I have noticed that my skin is softer (finally), and seems thinner. I have gotten scratches and sores easier on my body, and never had problems with this before, especially the bra-line area. My bras are not tight, and I do change them regularly. Has anyone else noticed a problem with this?
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Sarcoidosis/skin, synovial tissue, L. Knee, scalp, chest wall, lymph nodes DX 3/2006| PH 1 3/31/08| estradiol| NoIRs, covered up, low lux home, light exp. r/t small errands or MD appts.
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Deb Grabetz
Advocate
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Posted: Sat Jul 26th, 2008 11:40 |
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Hi
I've noticed my skin is very soft too. Pre-MP my skin felt leathery and coloring was not very good. I guess for my complexion I felt "pastie" all the time. Have not experienced any sores of any kind so I hope someone has a reply for you regarding this.
Something interesting I remember tho, now that you mention skin, is Pre-MP, if I got a scratch it would take weeks to heal. It crossed my mind that maybe I had something diabetic going on because I am overweight. I had never noticed such a long healing process. Now, when I have scratch it heals much faster!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
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Posted: Sat Jul 26th, 2008 16:11 |
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MAJSFLAS,
My skin is thinner as well...I thought it was aging (or more noticeable because of the diet and metabolism change related weight loss)! And I am getting sores on the MP (on my forearms and upper chest area); they seem to be IP and get worse whenever I start a new abx. And I did give myself a terrible scratch the other night just scratching an itch on my arm.
I'm also thinking that the "advanced" sort of aging I'm seeing in my skin might just be reflective of the heavy IP I've had--how hard it has been on my body (I was controlling my IP as best as I could; that was just my reality for the first 14 months). I don't know if this is true or not. However, when I crashed into disability (that is, when my body's own IP got much worse), the same thing happened--I looked like I aged 10 years in six months.
Perhaps this will get better as I get better. (I certainly hope so! I know when I was younger and had a particularly strong natural runaway IPR for 8 months that I ended up feeling 15 years younger and looking a whole lot healthier at the end of it.) I think there is a chance that as I get better that collagen production will begin again.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Dr Trevor Marshall
Research Team
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Posted: Sat Jul 26th, 2008 17:37 |
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Claire,
It is not just the collagen that returns, but the dermis (the layer under the skin) becomes full and "fatty" (soft) again.
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eClaire
Member in Phase 2
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Posted: Sat Jul 26th, 2008 20:12 |
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| Yeah! Thank you Dr. Marshall. It has been frightening to watch my skin age so quickly. I always looked much younger than my years and then, boom! it seemed in an instant that that was gone. Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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JanEE
Member in Phase 3
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Posted: Sun Jul 27th, 2008 06:48 |
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I had always looked younger than my years too, until I began the protocol. Of course I'm no spring chicken anyway, but I too thought I was beginning to age awfully quickly---complete with dark circles under my eyes. I thought maybe it was a normal thing, that my real age was just catching up with me after going through all this, and I have found it all quite disappointing. Until I read these last posts I thought I was the only one, but maybe not. If there are a lot of us going through this, then it must be another form of IP.
And it isn't just an age thing because there is a difference between healthy-looking old and sickly-looking old. At any age there is a special glow about being healthy that seems to make one's age a non-issue. That is where I have always wanted to be and hope to be when this is over---wrinkles and all.
I've also been wondering about weight and muscle tone. I've read that some people's weight has normalized. I'd be interested to hear more of the details about that taking place. I've read the weight article on the bacteriality site but just want more information on what actually takes place. What changes are noticed first? Does it happen quickly, or very slowly over time? Does one's fat tend to change in some way before it begins to melt away? I think I'm going through a ton of GI herxing right now so I imagine that I won't see much happening until most of that is over but dream of the day when I might have some semblance of a waistline again.
I have been struggling with weight most of my life and managed to maintain it, but only gained too much in the last ten years as more and more physical problems appeared. As hard as I tried I couldn't seem to get rid of it. With my GI and bloating problems on top of that I feel like a blimp most of the time. A couple years before beginning the protocol I got into an exercise program and even went to one of their seminars, where after six hours of exercise I felt nothing in my muscles the next day. They responded not at all! I should have been very sore, but wasn't.
I've only read about a very small handful of people here who have lost weight and regained muscle tone. Susan Andorn is an inspiration in the muscle department (I don't know if she had a weight problem), and we're almost the same age so maybe there is hope for me. Her story is wonderful. There must be others. I hope some of them will respond.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Aussie Barb
Research Team
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Posted: Sun Jul 27th, 2008 07:08 |
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re weight:
see JRFoutin Milestone Markers information like this just needs to be shared!!!
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| Cut D/exp July04| NoIR Aug04 Comm Beni| Sept05 off Thyroxine| CLICK ABCofMP
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
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Posted: Sun Jul 27th, 2008 07:28 |
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Like you, the sicker I got the harder it was to maintain and the fatter I got. (I struggled my whole life as well and used to joke that I had a fat woman inside of me screaming to get out.) I've been on the protocol since Dec 2006 and I've lost 40 pounds. I think my weight is beginning to stablize; however, my muscle tone is poor (I say that and yet it seems to be getting better in my arms of all places). I attribute this to the fact that I've been mostly lying down or sitting since 2002. I'm expecting improvment in muscle tone as my ability to move around increases.
I've also had GI herxing since the 3rd week on Benicar. Nearly two years in and there's been no let up.
As far as fat redistribution, I am slightly bustier at this weight than I have ever been and my butt is smaller. A result of a lack of exercise? I don't know, but I'm thinking that God has finally answered my prayers and gotten rid of my fat butt! I guess I shall see when I finally get throught the protocol.
Can't wait until I am well enough to do weight lifting again so I can tone up my muscles!
Oh, btw, in the years before my health completely crashed I could do just about anything and not experience muscle pain (except for bouts of Fibro, which were often unrelated to activity). I moved into a new home with stairs after one floor living and with all the running up and down the stairs that one does when setting up a new home, my calves never hurt a minute. I don't know what that phenomena is is about, but it is certainly curious.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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JanEE
Member in Phase 3
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Posted: Sun Jul 27th, 2008 07:39 |
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Hi Barb,
Thanks for that link. I am really happy for her and she is another truly inspiring story---the kind that we all love, and need, to keep reading about. Her new picture really reflects the improvements she mentions too. I can just imagine how overjoyed she must be.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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JanEE
Member in Phase 3
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Posted: Sun Jul 27th, 2008 08:08 |
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Hi Claire,
I didn't see your post until I'd already sent my previous one.
Somehow, from looking at your picture I had the impression you had always been thin. Wow! A 40 pound loss. That's impressive. It must have been the right amount to lose if it's beginning to normalize. You don't look too thin or too fat---but just right.
I decided to begin walking on my treadmill the other day and did about three sessions of about 7 minutes each (that's about all I could handle) spaced throughout the day. I did that for two days and did fine. I was looking forward to building up the time but on the evening of the second day my left knee started to act up again (I have a torn meniscus and a small Baker's cyst) and I thought---oh no, here I go again! So, I had to quit. It's gotten better already though so maybe there's hope. As Susan Andorn said in her article, she is waiting until she's totally well to see if her torn meniscus repairs by itself. I decided I would too if I can hold out that long.
Did you used to lift weights? I've always been interested in trying that, but I think it may have to wait a bit. I think the lack of sore muscles after exercising more than usual is not normal, but then we weren't exactly normal before beginning our present journey on this protocol. When we get well, our muscles should respond a bit in that direction, I think.
I can't wait until I can begin to do some decent work in my yard again. I have done most of my landscaping myself and was used to lots of unloading of soil, digging, moving plants about, and even building myself a concrete block patio. I also unloaded and hauled all those loads of blocks down a flight of stairs to the lower back yard. Today, I'm pooped just lifting a couple---one at a time. I have more waiting for me when I'm able as I was getting ready to expand the patio a bit.
Has your friend arrived yet, the one who is relocating to help you out? I can't stop thinking about such a wonderful deed. Even just the company would be great, but she's going to help too. Tell her that she is appreciated by more people than you.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
Member in Phase 2
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Posted: Sun Jul 27th, 2008 13:03 |
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Hey Jan,
Well, like many folk I lose my weight in my face first! (Though I know for some folk the face is one of the last places to lose.) My basic body type is thin/slender. When I put on weight, most of it goes to the torso and then the face and limbs, and so even though the face and limbs are heavier, I feel like Ms. Potato Head (I always wanted to be one of those people who put on weight all over sort of the way some folk with straight hair want curly hair). I've dropped from a 16 to a 10 and it looks like I may end up as a size 8, which is what I usually was when I was at my healthiest.
I've had CFS symptoms since I was a kid. The only exercise routine I was able to sustain over any lengthh of time was weight lifting, as anything aerobic would have to be ditched about the time it seemed to be benefitting me. That is, I could sustain weight lifting for long periods of time until I hit my 30's and then I couldn't sustain that. Weight lifting really makes one feel grounded in one's body, as would I imagine any exercise that focuses on and tones all of the muscle groups. Once I am well and tone my muscles and improve my bones with weight lifting, however, I think I will stick with yoga and perhaps tai chi. I'll have to wait and see.
Like you, I am an avid gardener and can't wait until I can get most of my work out in the garden! Heck, I even enjoy the mindless nature of weeding. I know what it is like to be itching to finish a project (like your patio), as the house I had to move into because of total disability (one without stairs) needs a lot of landscaping work. Fortunately, my friend is a masterful gardener and plans to create the secret side garden that I've wanted and turn my backyard into an oasis. She may even eventually build a pergola over the back deck. Just last night she was mentioning Morning Glories, and I've always wanted, but never planted Morning Glories. So it will be great to see my dreams take shape in the yard. Luckily, I hired a landscaper to do the work in the front yard before I started the MP.
My friend Kimberly is due in the next two weeks. And just the fact that she wants to come live with me has been restorative to my soul after having had so many people walk away due to my disability. The best thing is that Kimberly says she is no Florence Nightingale and has enumerated the ways in which she believes this will be a win/win situation (for one, she is a writer, and although you'd never know it by my posts, I'm a pretty good editor).
I'll let her know that her good deed is lifting the spirits of more than just me!
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Deb Grabetz
Advocate
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Posted: Mon Jul 28th, 2008 03:20 |
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I'm hoping someone can answer this for me! My dx is Sarcoidosis. For quite some time my *muscles/tissue, mainly in my butt and thighs, (I'll do my best to explain this...) feel "ribbed". I also experienced a small area in my back in the beginning. Since being on MP, my butt *muscle/tissue (yes, I do have them!) have become much smoother and normal tissue-like but the thigh area is responding much slower. Also, I've noticed massaging this area seems to be a pain reliever.
BTW this is not deep, maybe a 1/4" below the skin, is this *tissue or muscle?? It is only in these two areas, not my calves or upper body! Just curious what this might be...!!!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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VEZ R.N.
Board Staff
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Posted: Mon Jul 28th, 2008 06:51 |
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Deb,
From what you describe it sounds like the "ribbed" or lumpy areas could in fact be sarcoid granulomas. I have noticed exactly the same thing especially on the back of the thighs. They were not noticeable before but seem to be coming to the surface.
I believe as the immune system continues eradicating the CWD organisms that tissue remodeling will occur and eventually these granulomas (which contain a lot of organisms) will disappear.
Best Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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