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Dody
Support Team
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Posted: Thu Jan 1st, 2009 00:51 |
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Deb,
I'm thrilled for you that you've been able to get back to work!! Way to go!!
For those of us fortunate enough to be able to, I find work one of the best therapies in the sense of distraction from discomfort, and connection with other folks.
Gratitude indeed.
All best, Dody
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Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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Toni D
Member
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Posted: Thu Jan 1st, 2009 11:29 |
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I have always known I was divinely directed to the MP and believe I've shared the story before. Praise God for His Mercy that is new every morning and His unending Grace!!!
Deb, thanks for your praise report. Today I'm reading the site for the first time since the beginning of December. I too was able to take and complete a two-week out-of-town job; however, I was not able to man my laptop, as it was all I could do to rest after almost 10-hour days. But bless God I did it, and it felt so good in the doing .
Just want to share I realize I'm not where I want to be in the process yet, but I thank God everyday I'm not where I used to be.
Everyone feel good, be blessed ...Happy New Year!
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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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expate
Member
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Posted: Sat Jan 3rd, 2009 04:26 |
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It's wonderful to read everyone's posts and relive the hope that the MP brings. I am not nearly as ill or incapacitated as many on the MP, but being on this treatment has brought quality of life issues to the fore for me. I am better off now even as some aspects of my life are more limited due to the protocol. I know that part is temporary and expect that the improvements I am experiencing will be permanent.
Thank all of you for sharing - experience, knowledge, and fraternity/sorority.
Good to see you "flying high", Deb.
So, I'm grateful to diversity. Diversity that allows all manner of people to allow the freedom to explore all aspects of this world. I am very grateful that there are the Dr. Marshalls, Meg Mangins, Amy Proals, et al who think in these directions that bring us to healing. I am grateful to the Barbs, Julias, Debs, and Claires, who are tenacious AND bring the rest of us to gentle understanding. I am grateful to the Dr. Blaneys, Dr. R's, etc. who have open minds to challenge the status quo in their profession of medicine. I am grateful to the artists who touch and actively reach into my life to give me reason to want to be well. I am grateful to a new political process that seems destined to foster change in positive directions, that puts renewed emphasis on science, diplomacy, health, and social programs.
I am grateful to be here.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sat Jan 3rd, 2009 04:52 |
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I just got off the phone with my doctor, and I am writing to say how grateful I am to have such a flexible doctor who is open minded and willing to listen to all that I have to say to him about the MP and is also willing to engage me in devising strategies to help me cope with my IP (when my labs get too far out of whack). Not only does he seem to be a good doc, he appears to be a decent man with good doctor/patient skills (and besides his wife has CFS and so he has a personal stake in hanging in there with a protocol that promises to cure CFS).
What fortune not to feel condescended to!
Claire
P.S. to Odette...I got teary eyed reading your post. We all have so much to be grateful for. I am ever so grateful just to have the opportunity to be alive. Life is bittersweet no doubt about it. I am reminded of a painting by one of my favorite popular "commericial" artists (Rodney White), who often includes text in his paintings; this particular painting reads: "I gave her roses and she blamed me for the thorns." I always used to tell folk in counseling, "Life becomes easier when you accept two facts: life is hard and life is not fair." Expecting life to be easy or fair just makes for unnecessary suffering. The bitter is always there (even if only in the background), and sometimes we have to hunt for the sweet, but how sweet it is. (Hmmm...I can hear Jackie Gleason saying that.)
Here's a Rodney White I have in my home--"WE TEND TO Seek Happiness when happiness IS ACTUALLY A CHOICE
Here's another one I have--"Rain is good for growth; Shine is good for blossoming."
Last edited on Sat Jan 3rd, 2009 05:04 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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expate
Member
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Posted: Sat Jan 3rd, 2009 05:37 |
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Yep, I'm grateful we all are here, in all our various array and plumage.  back at you, Claire.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
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Posted: Sun Jan 4th, 2009 07:12 |
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I am grateful for all the people who post here! 
And I am grateful for all the validation we get.
It's like this video...
Validation
(Clean humor short about making people smile using words of affirmation.)
And I am grateful for Dr. Marshall and all those who have made it possible to have hope in a healthy future through the MP!
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Search the MP Knowledge Base __ Be Kind, We Are All Fragile
•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•´'`•.¸♥¸.•
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Sunbeam
Member
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 359 |
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Posted: Mon Jan 5th, 2009 07:23 |
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I have had a break from reading on the MP site over Christmas and the New year period as I have had family visiting. Although the visit has left me feeling tiired and my sxs are still severe I am so greatfull to have coped as well as I did. I feel the joy of seeing my family and grandchildren was worth the effort I put into our time together.
I managed by increasing my meds and somehow I coped. I am truly blessed. Like Odette I can only say thank you to all involved with MP, who's encouragement and support I truly appreciate, Dr Marshall, Moderators and all who share their Knowledge
and skills to create an improvement in our quality of life.
Great to hear your news Deb and I loved the youtube video Joyful,
May 2009 be abetter year for us all,
Godbless, 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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Deb Grabetz
Support Team
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Posted: Mon Jan 5th, 2009 16:26 |
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Thank you for all the nice responses...they mean so very much to me!! Odette, Dody, Claire, Sunbeam, Joyful, Toni D...Michele--WOW! yup, isn't that the kind of "happening" that is a constant reminder of being exactly where you are meant to be here on the MP? Wow, that gave me little shivers when I read about your walk along the waterfront...WOW! See, NOTHING IS BY CHANCE...
I find the enthusiasm that is shared by each, whether in response to a small or huge accomplishment, (and they all seem huge to me!) to be so heartwarming and encouraging here. But of course each of us, has lived that feeling of making progress and taking baby steps to wellness...It is a deep mystery to feel this kind of enthusiasm, that only those of us with chronic illness will ever truly be able to understand!!! Deb
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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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JanEE
Member
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Posted: Tue Jan 6th, 2009 02:36 |
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Claire, many thanks for Rodney White's artwork. I checked out his web site and really like what he does. I worked a bit with type in paintings while in art school, and I've always liked it in paintings---and have even seen portraits done against a graffiti background that were stunning. Did you happen to check out the video of him painting that he has on his site---or maybe it was his blog?
And isn't it so true about the bitter and sweet? Who knows that better than all of us, who herx, and herx, and herx, for the wonderful promise of sweetness to come.
Joyful, thanks for Validation. It's wonderful. I sent it to my daughter who is going through some trying times right now, and she loved it too. She will probably send it to all her friends too. Sort of like those smiles passing from one person to another.
Deb, I'm so happy for you and all your progress. It's truly heartwarming to read about so many of your improvements---and even being able to go back to work.
I sometimes wonder if I am in a mild stage 5 (mild because it's not as bad as some), as I have cut back on my meds during December and I don't feel any different than I did before, which is not wonderful. It's kind of hard sometimes, but I guess I need to feel gratitude for not feeling great, and remember that my body is working hard to recover.
---------and a happy new year to all of you. I pray for all of us to enjoy better health this year.
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
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Jan 6th, 2009 05:21 |
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Hey Jan,
No I haven't seen White painting. I shall have to revisit his site.
I caught myself being disappointed about having to take a break from the abx right after starting my first round of Phase II abx in November (too high kidney labs), and then it occurred to me (weeks after a little bird called Juanita whispered this very thing in my ear) that my first cycles of Phase II abx (and I did three cycles before finding out what the labs were after the first) were like rounds in a boxing ring and I now need a rest. My kidney IP is still high (as of three weeks ago) and so abx or no abx my body is still giving a good fight. That's good news.
Whatever the improvement or seeming setback one thing is for sure: the MP stretches you as a person.
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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expate
Member
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Posted: Tue Jan 6th, 2009 05:40 |
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I love you guys.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Tue Jan 6th, 2009 05:46 |
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But also... I mean, you just gotta' love the MP. It brings forward all the things we thought were weird about us, and then some. I've got what started as a small sort of variegated red spot on my face that became three dimensional and is like nothing I've ever seen before. This, to me, is proof positive that much unknown lurks beneath the surface. It's a journey.
Happy New,
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Jan 6th, 2009 05:54 |
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dette, ...referencing what "lurks beneath the surface":
"If you bring forth what is inside you, what you bring forth - will save you. If you don't bring forth what is inside you, what you don't bring forth - will destroy you."
-- Jesus Christ (from the Gnostic Gospel of Thomas)
...applicable on so many different levels...
Last edited on Tue Jan 6th, 2009 05:54 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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expate
Member
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Posted: Tue Jan 6th, 2009 06:03 |
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Thanks. The spiritual creeps in as axiomatic... for this atheist.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Jan 6th, 2009 07:02 |
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| As someone whose religious beliefs (and I personally believe all world views, athiest or otherwise, are religious) are often way outside the US norm, I appreciate your understanding. As for me, I take "truth" as I understand it, paradoxical or not, wherever I stumble upon it. What a cornucopia of ideas exit out there in the universe, delightful, wonderful, and uplifting and not, insightful and not. At the very least it is "food" for thought. And so the feast goes. 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
Member
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Wed Jan 7th, 2009 18:26 |
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I am grateful that I can get to my oldest daughter's paramedic graduation this Friday. I've been seizing for the last four days due to some spectacular chemical exposures, but my fatigue is only a little worse and I'm still standing.
It used to be that one of those exposures would take me to a place where I wouldn't know if I was going to live anymore. Now, I'm just miserable, brain befuddled, with small seizures. Even the size of the seizures are smaller!
I had wanted so badly to be well enough to go to the dinner and dance. In truth, I'll get to the ceremony and then see if I can manage the tea. And only because the college has great air return in the hall and Hub. If they hadn't, I would only be going to the grad ceremony.
I'm not looking forward to wearing my breathing filter mask in a large crowd, but I have no choice about it. Add that my brain isn't doing well.... chances are decent that I'll seizure during the whole thing. Add some NoIRs with my high heels? Uh.. yeah. Awkward.
Maybe no one will notice me standing in the back doing the Funky Chicken? *cheeky grin*
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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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Deb Grabetz
Support Team
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Posted: Fri Jan 9th, 2009 15:05 |
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Juanita,
Congratulations! Seeing our children achieve is a prideful accomplishment as a parent also! My hope is that you are feeling well enough to take in all of the festivities!
You continually amaze me with your humour even in the midst of dealing with your symptoms. Your sense of humour Juanita, has truly been a gift for many of us here on the MP. There is no doubt that laughter is also a "medicine" in it's own right--- and without the laughter you share, I know there would be much less smiling going on at this end of the line...! Enjoy your day and again my best wishes!
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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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Juanita
Member
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Mon Jan 12th, 2009 20:56 |
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You know what they say.... if you can't take or make a joke, don't be born.
The grad went really well. The ceremony hall had terrible air return, so we stood in the back and quietly became ENORMOUSLY stoned. Which in my case.... made me the drunk in the hall. I'm only glad I kept my clothes on and there were no lampshade to place on my head. 
I had a blast. Woof, woof, woofed as my kid walked to the stage. So loudly, Martin said I could be heard by all on the podium. Cheered as she got her diploma. Bellowed with joy as she paraded off the stage with her whole class. And then jumped her in the aisle to hug her breathless afterwards as I yelled, I'm so damn proud of you!!!
Fortunately, she was delighted. 
Then we had tea with the in-laws, her new beau, met some of Martin's fellow staff members, and some of Gen's fellow graduate. It was MARVELLOUS!
I didn't go to the dinner and dance as it was WAY too much chemical exposure just with what we'd done so far. But... great news.... as of now, Monday afternoon and the grad was Saturday afternoon.... no seizures, no fatigue, no horrible reaction at all!! I feel fabulous! Tired with sore lungs and sinuses, but fabulous.
My first big time showing of my MP healing. We are all stunned and in awe. Yay MP!!
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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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Aunt Diana
Support Team
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Posted: Mon Jan 12th, 2009 23:17 |
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| So happy for you, Juanita!! Nothing but blue skies up ahead.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Jan 13th, 2009 00:23 |
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I've shortened all those "if you can't take a joke..." and "we make plans and God laughs" to "I hear God laughing." Perversely, it never fails to make me laugh and cheer me up. No one ever said life was going to be easy.
Juanita, I am so thrilled with not only how your evening went, but with the ability of you to weather it on top of having a fabulous time. And thanks, once again, for making me laugh! * imagining you with a lampshade on your head *
Claire
CONGRATS GEN!!!  to the whole family!
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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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