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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Sun Aug 16th, 2009 01:58 |
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We did really well with her doctors being very interested in the MP. Three of her ICU docs went to the computer to read the material for professionals so they could figure out what meds would do better with what she'd been taking.
The dietitian was floored with the D information and got it in a heartbeat that D is an immuno-suppressant, so why is everyone pushing it so hard on sick people.
Two nurses went to read the material as what Sarah Jane was explaining made so much sense to them.
And our own doc is convinced that the reason SJ's MCS is better is solely due to the MP and is now even more on board with us.
Eventually, they decided that they didn't know enough to know what would or would not interact with her meds, so they had her stop all MP doses. But they were interested and they tried to accomodate us. She was just too critical for them to take chances on and we were too terrified to argue.
We expected to be riduculed, but their open and curious minds were fascinated instead. What a blessing. And on a better day, we would have danced a jig when the head gastro doc said that he was very impressed with Dr Marshall's science which is rock solid and very impressive.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sun Aug 16th, 2009 03:47 |
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Yeah Sarah! Yeah Juanita.... Yeah to the whole family! Last edited on Sun Aug 16th, 2009 04:43 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
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Posted: Sun Aug 16th, 2009 05:35 |
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on a better day, we would have danced a jig when the head gastro doc said that he was very impressed with Dr Marshall's science which is rock solid and very impressive
Wow. Almost bleeds to death from an OTC drug and her "alternative treatment" turns the heads of the docs, nurses, and a dietitian. Wow.
She is alive, you have medical support like never before, you have each other, and you got us. Lots to smile about. 
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Search the MP Knowledge Base __ Be Kind, We Are All Fragile
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Sun Aug 16th, 2009 20:40 |
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It's a bad way to spread the word about the MP, but effective. Nobody follow in Sarah Jane's shoes, though, okay? I don't recommend the Wild Rabbit Ride.
But how stunning that so many staff and doctors were interested and found the MP science to be stable, wise, innovative and solid! Rock on, Staff! University hospitals must have more open minds than regular ones, eh?
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sun Aug 16th, 2009 21:08 |
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| That delights me to no end. Now if I could only get my doctor interested and excited!!! Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Sun Aug 16th, 2009 22:42 |
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Some day. We were treated with such respect after the doctors had read on-site, it can only be a matter of time before more eyes are open. Mind... by then you'll be well.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Fri Oct 2nd, 2009 05:34 |
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I've no doubt said this before on this thread... I am so grateful for my two small dogs. Without their constant companionship, I'd be bonkers.
And I am grateful to my friend Eric for moving in with me to assist me with house repairs, yard work, grocery shopping, and errand running in general (both here and at my mother's)... and for bringing his two wonderful teenagers with him.
AND I am very grateful to have friends both on and off the MP who know what it is like to struggle with chronic illness. It helps me not feel so alone.
Blessings of good health to all,
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Wed Oct 28th, 2009 20:07 |
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I am grateful for this sudden leap forward of my stroke damage healing. I can finally knit like a normal person. Well, a normal person who is slow. Not one of those Mall of America Fastest Knitter's contest winners.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
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Posted: Thu Nov 12th, 2009 02:46 |
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My "light and easy sudoku" puzzles arent' giving me fits right now... uh, but I still have to use my custom "dot system" as a memory aid half the time.
I am grateful for my one sibling... I just got a card from them that contains prose that says it all:
"Throughout our lives,
we have many friendships...
from the casual
to those that are precious beyond words.
And sometimes, it's not until
we hit a bad patch
that we discover which are which.
When the casual friends see trouble,
they smile, give a hearty wave,
and say, "Good luck with that."
But the real friends,
the true friends--like you--
don't have to think twice before stepping up,
without being asked,
to give whatever you need.
You're the kind of friend
who's right there to support me,
no matter how bad things get--
ready to fight monsters, give me strength,
or simply stand by my side
until the worst is past.
You can't know how much
that loyalty means.
You are a joy, an inspiration,
and one of the best things
that ever happened to me.
You're what being a real friend
is all about.
Linda Lee Elrod
Last edited on Thu Nov 12th, 2009 02:48 by Joyful
____________________
Search the MP Knowledge Base __ Be Kind, We Are All Fragile
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Deb Grabetz
Support Team
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Posted: Wed Dec 30th, 2009 21:13 |
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People are starting to tell me I am *looking well*...that makes me very grateful. Especially those who have not seen me for a few months...
My daughters BFF is visiting from Hawaii and those were the first words out of her mouth. It was great to hear as we still struggle with IP and those days when things are just not in sync, it feels good to be reminded that things are getting better, much better!
Happy, Healthy New Year to All!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Sunbeam
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| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 359 |
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Posted: Thu Dec 31st, 2009 06:15 |
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Although IP may be pretty high today, the few days over Christmas were wonderful and I was able to enjoy a Christmas with my family that I haven't known for years.
How marvelous is that?
I am so grateful to have been able to participate in this wonderful time of the year and to do the things that I have been able to do. Thank you MP, DR. M and team.
My wish for you all is that the New Year brings health and happiness for all,
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 2/08
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Thu Dec 31st, 2009 20:45 |
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Ah yes! Deb Grabetz was just reminding me when I complained of having over done it over the last two weeks that the amount of what I did to get to that point is much more than I've been able to do for a long while. There's success in that. I still feel very tied down and limited... I feel like a horse at the starting gate who was held back when the gun was fired. But still, I'm making progress. And for that I am grateful.
Grateful to all.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Thu Dec 31st, 2009 20:48 |
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I'm grateful for the fact that I accidentally pushed the yarn over the needle in the way shown in knitting instructions instead of having to pick up the yarn and wind it through as I have been doing for well over a year.
I've been closer to this day and last night the happy accident occurred and I find I can do it. Then, I needed to learn how to thread the yarn for the right tension to match my new technique. That wasn't so hard to get used to either.
Perhaps my brain is getting better and these things that seemed impossible now seem within the realm of possible. (In fact, I am going to try to knit a sweater.)
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Freddie Ash
Member
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Posted: Mon Jan 4th, 2010 20:25 |
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HI ALL
This is Fred in WV. I received a T-shirt for Christmas from one of my sons. It reads:
CAUTION: THE PERSON WEARING THIS SHIRT HAS SARCOIDOSIS AND MAY
MAKE SUDDEN STOPS TO: CATCH A BREATH; SOOTHE A JOINT; RUB AN
EYE; TAKE A NAP; MOP UP SWEAT; SCRATCH A RASH; STIFFLE A BELCH;
FIND A CHAIAR; LOCATE A RESTROOM; BECOME ANXIOUS; SUDDENLY
DEPRESSED; PUNCH A DOCTOR; OR CURSE OUT LOUD;
PLEASE DO NOT BE ALARMED
THANK YOU.
He also got Sue one that has the purple ribbon and says:
I WEAR IT FOR MY HUSBAND
SARCOIDOSIS AWARENESS
I have posted this here because thanks to the Marshall Protocol I no longer most of these symptoms. Yea!! Yea!! I am greatful for Dr Marshall and the Marshall Protocol.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Deb Grabetz
Support Team
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Posted: Mon Jan 4th, 2010 22:28 |
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| Freddie...Your post brought tears to my eyes. What a wonderful feeling to be able to post such words, I understand your greatfulness...and what a wonderful world it would be if we could reach out to each and every person diagnosed with sarcoidosis and help them understand the importance of the MP and how it could change their life!!!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Freddie Ash
Member
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Posted: Tue Jan 5th, 2010 01:51 |
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HI DEB
This is Fred in WV. When I opened it up I could hardly read it because I was laughing so hard. Sue just said,"THAT IS JUST LIKE FREDDIE". He gave me 2 on fathers day, I will have to post them some time.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Jan 5th, 2010 05:46 |
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When I read your post, I thought "What a wonderful son to take such interest in his father." Even if you are not having those symptoms, he is still educating others about this disease. Great!
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
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Posted: Tue Jan 5th, 2010 06:05 |
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Freddie, I laughed out loud when I read the words you kind son put on the T-shirt for you. Very good!
I am grateful that I have hopes of someday sitting in the driver's seat like the woman in this Japanese advertisement...
http://www.youtube.com/watch?v=PAaGGrbRELs
... it's even "catch and release" ... very sweet.
____________________
Search the MP Knowledge Base __ Be Kind, We Are All Fragile
•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•
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Freddie Ash
Member
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Posted: Tue Jan 5th, 2010 13:29 |
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HI CLAIRE & JOYFUL
This is Fred in WV. Thanks for all the kind words for me and my son. Your guys(??) are the greatest.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Deb Grabetz
Support Team
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Posted: Tue Jan 5th, 2010 13:58 |
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| Freddie...Actually YOU are the greatest
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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