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Julia
Member in Phase 3
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Posted: Sat Aug 11th, 2007 22:52 |
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Reflections on a certain Big Birthday 
I'm an OAP,
(that's a retiree),
Herxing along on the old MP,
Getting younger by the day,
I'm no Senior Citizen, hey!
Most of the things that my dear young doc
Thought were just signs of an aging crock,
As the sarc has healed have gone away,
I'm really only sixteen today!
I'm a fraud, I'm a fraud,
I'm a fraud, that's me,
They're giving me my pension, you see.
They don't realise that I'm counting down,
So sixty will never be coming around!
Hope and energy are zooming now,
Brain fog’s gone and life is wow.
But I'll draw my pension, cos I don't need to say
I'm really only sixteen today!
 ...good old MP! 
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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sunflower
Member in Phase 2/3
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Posted: Sun Aug 12th, 2007 00:43 |
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Happy Birthday, Julia!!! only 4 more for me and i will have caught up with you . very glad you're reaping so many wonderful benefits from the MP and doing so well. can't wait for my turn!
God bless you......sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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tibet
Member
| Joined: | Wed Mar 14th, 2007 |
| Location: | United Kingdom |
| Posts: | 71 |
| Status: |
Offline
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Posted: Sun Aug 12th, 2007 00:56 |
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your a fraud ..you'll have to give it back Julia...
stella
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20 years CFS/ME Looking for helpful doctor in UK Have 3 grownup children with disease.
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 288 |
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Offline
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Posted: Sun Aug 12th, 2007 01:17 |
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Wishing you a happy day and a happy healthier year to come. Enjoy being sixteen.
Best wishes 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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Julia
Member in Phase 3
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Posted: Sun Aug 12th, 2007 17:04 |
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| Thank you, Sunflower and Sunbeam! LOL Stella, no way!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Sun Sep 16th, 2007 00:25 |
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Today was a good day: I had some encouragements. I enjoyed six hours at a church conference, much of it sitting.
1. I made it right the way through 
2. I had to sit at the front as I was taking part briefly, and at the front there's no seat in front to hold on to if I stand for the singing. I've been sitting for hymns for years, but recently my ankle's been so good I've been standing for some of them, but holding on to the seat in front. Today I stood for all the hymns, on my own two feet 
3. This is the best of all:
I used to dread such inter-church gatherings because I couldn't put names to the familiar faces - sometimes couldn't place people at all, just vaguely knew I was supposed to know them. I'm expert at covering up the fact that I don't know who I'm talking to!
Today I was knowing people, even before I got a look at their name badges. And I was placing them in their churches, and connecting them with their families.
This is the second glimpse I've had that my memory might come back  (the first was when I started knowing children's names around the school).
The softly softly approach has worked for this cycle. I have had plenty of minor herxing, all tolerable, and the eczema flare has hardly been worth calling a flare at all... yay!
Postscript: I just realised I also came home and stood and made a full roast dinner, and apple & blackberry crumble - had to walk up our looong garden to pick the blackberries too! And I'm not really tired yet
Last edited on Sun Sep 16th, 2007 02:20 by Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Wed Apr 9th, 2008 16:38 |
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Four years on the MP: am I not cured yet?
Folks come to the MP asking, naturally enough, is it a cure?
Sarcoidosis isn't a fixed set of symptoms, so that when those symptoms resolve, you're cured. Sarcoidosis is just a label stuck on a group of testable conditions by our noble but highly human and fallible medical guides.
When I found I had sarc about five years ago, as far as I was concerned I was a moderately healthy person with just a serious eye condition and a bad reaction to a combination of a cod liver oil supplement and a sunny holiday. If I could have had those two things - uveitis, and hypercalcaemia with its crippling side-effects - cured, I would have happily gone back to being a 'moderately healthy' person... albeit a rather allergic person, with a few signs of getting older...
I didn't like the idea of steroid treatment, and decided to try the MP instead. My hypercalcaemia was cured in the first few weeks, and the uveitis was cured in the first couple of months. So I was cured of my sarc symptoms, the only ones I knew about (I never had it much in the lungs, which is unusual).
But in my 'moderately healthy' state, I also had:
fatigue, ankle osteoarthritis, knee stiffness & pain, muscle cramps, limb & joint pains, restless legs, ‘tennis elbow’, carpal tunnel syndrome, sweats, cough, dry mouth, tinnitus, numbness & nerve pains, lifelong eczema, hay fever, swollen glands, nose bleeds, nocturia (needing the bathroom in the night), dust mite allergy, unexplained bruising, arm fatigue (couldn’t reach something off a high shelf), phobia, brain fog, inability to read or concentrate, memory loss, and mild Obsessive Compulsive Disorder…
Through the process of immunopathology, I came to realise that all these were symptoms of Th1 disease, and as I kept going on the MP, they began to resolve. The only ones I still have some bother with (apart from a bit of herxing sometimes) are ankle arthritis (improving slowly), knee stiffness (improving slowly), restless legs (less frequent), and eczema (comes & goes with certain antibiotics).
Now, am I cured of sarc?
...good old MP!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Julia
Member in Phase 3
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Posted: Sun Jun 7th, 2009 23:24 |
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Arthritis can not be cured...
Look, Dr Rheumy, I ran, I ran!
You said I would never - I can, I can!
You told me the bones in my ankle showed wear,
Arthritically mangled beyond repair;
Deformed they would be for the rest of my days,
A stout walking stick my companion always.
"Crippled for life," is what you foretold.
"Get used to it," you said, so hostile and cold.
A cripple for life is what I might be,
Were it not for the wonderful, priceless MP!
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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BARNEY
Moderator
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Posted: Sun Jun 7th, 2009 23:56 |
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Julia,
BEAUTIFUL!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Pipistrelle
Member in Phase 2
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Posted: Sun Jun 14th, 2009 20:45 |
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Julia,
What joy and glee in your poem! There's no stopping you now!!
Morag xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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