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Deb Grabetz
Member in Phase 2
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Posted: Mon Jan 7th, 2008 10:37 |
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Joyful wrote: Janet, you have come such a long way... I am inspired by your persistance and willingness to embrace some temporary difficulties in order to live a longer, healthier life. Thanks.  Deb responded:
Janet, the message that Joyful sent could not have been said better. Yours was not an easy recovery yet your persistance has brought your health back. I love reading about your busy life...it reminds me that I will have mine back someday!!! Yours is a recovery story that reminds us all to keep pushing forward, yet would also..... inspire any newbie, to believe and committ to healing with the MP!!! Hugs from me to you, Deb
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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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jrfoutin
Member Advocate
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3845 |
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Posted: Sun Apr 13th, 2008 04:32 |
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MP Ph3 continued
Light explosure: Minimal, as usual.
Symptoms: Sand continues (7-8, although I won't call ER... sigh, but it was really intense, almost raining sand some days), sand pile with lots of scratch-removed clogs everywhere, mostly scalp. Not flaky dandruff, the sand looks the same from scalp as it does scratched from other locations. One day of really awful extra greasy hair during cycle peak even after washing it that morning. Weird. Makes me wonder if my skin was clogged all this time and now dumping clogs. Hair is starting to be shiny not dull. Infrequent, short, and very intermittant tinnitis during cycle peak days again (1). Yesterday (end of day 1 in cycle) evening chest pressure by heart (2-3), took extra Benicar and rested, today fine.
Comments: Was able to help when mother had minor surgery Th and next day. Getting most work tasks done, but still not all.
Seem to be feeling thinner around waist and chin (double chin going away).
March:
Fewer muscle twitches
clustering lumps and bumps under skin in limbs and abdomen/back (some small as a button, others almost the size of a small fist) are getting softer and/or smaller. Prominent lump in my left top forearm is almost flat now and quite reduced in size. I can still feel it there, but it has changed a LOT. That's a big difference in just a few weeks and during the last 2+ years on MP it just didn't change much.
Now: Visible lump mid-left top forearm is getting softer, smaller and going down. It's almost gone and barely visible. It used to poke up like I had a good-sized marble under my skin.
May 08:
I can say that Sarc in the bones is quite painful, having been there. Tonight, I cut out a pattern for a suit I was building for my son, and cut it out on the floor like I had done years before. I was able to get up without pain or difficulty. I actually like to show people how I can do this, and I tell them how that was just impossible for me 3 years ago.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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jrfoutin
Member Advocate
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3845 |
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Posted: Wed Jun 25th, 2008 19:44 |
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MP Ph3 continued
Light explosure: Minimal, typically, except for during move this month, and most recently when I've had to do all aspects of setting up house and home and not being sure enough of my new city and general territory, or being too new to the area to find my way home at night. So the day has had to be the time I did a lot of tasks.
I stay covered with long thick clothes and wear my darkest NoIRs outside, but I am not as concerned about light from time to time now as I was in the early MP when even a little exposure would have serious consequences. Still, erring on the side of caution, light for the majority of time remains comfortably appropriate for the MP.
I just thought that it was worth mentioning that I'm not yet at the year 3 marker for the MP. However, except for a very few minor reminders, my health is remarkable.
LONG WAIT FOR WEIGHT
I've noticed my figure has finally started to change from rotund toward what I remember more in my 30's. It will be interesting to find a scale at the end of summer to see exactly how much I've really lost. But clothes that had been tight are now loose fitting, and even recently-purchased pants that were snug fit just weeks ago are not snug anymore.
To some who have never been ill, changing one's figure might have been something easily done by changing diet or exercising more. But I tried to do that when I was ill and the results were difficult, abysmal and frustrating.
FEET
Shoes that were once snug are also finding my feet quite slender and well formed, even though the skin damaged spots from edema over the last 3 years still reminds me they were huge before the MP, and much of the early MP.
HANDS
My hands and fingers are better defined and fingers are more slender. The only ring I wear now is the one passed down from my grandmother. It no longer is snug and the gem mounting side often wants to twirl around my finger.
NECK
My neck is starting to have a regular "neck" shape rather than the Michelin tire-man neck I've sported for a decade or so. I'm watching the rest of me with great interest as it makes similar changes.
ENERGY
I work a full day without being tired. Moving and setting up house and home and getting all the particulars taken care of has been a challenge, and would be for any well person but for me to do these tasks day after day, it has been a wonderful adventure into just what I could do. I'll say it again: It has just been wonderful.
RISING ON OCCASION
Weeding and planting while kneeling and sitting down on the ground is new this year. Although I have been able to get up from a floor sitting position for about a year now, I still haven't tried it very often. This morning I mowed my lawn and later put in 2 flats of annuals while getting some watering done on the dry patch of grass around my new home. I had to move the sprinkler every few minutes while planting and that meant up and down -- a lot! Toward the end of the planting time frame it wasn't quite so easy, but I was still able to get up and down from a ground position.
To others watching me do simple standard yard tasks (recently a LOT of heavy lifting tasks too!) this might not seem like much if they never knew my history. However, for me it means I have more of my life back, more quality of life than I have had for a decade or so when I wasn't able to enjoy this in my life.
EYES
I've noticed a lift in the light sensitivity recently too. I was --REALLY-- light sensitive in the early MP, wearing dark lenses even in the dark and at night. I had to wear a sleep mask at night because even light from a mobile phone recharger would be too bright. Now, I wear NoIRs outside from an abundance of caution, not because I have to.
Life is very good even though immunopathology is still evident. However, IP's are not overpowering or constant and most days I have no abrupt reminders that I am or was once living in a very sick body.
Sorry for the long post, but information like this just needs to be shared.
Choose well, get well!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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Joyful
Member in Phase 3
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 483 |
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Posted: Wed Jun 25th, 2008 20:35 |
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Janet, your recovery update is so encouraging!!!
Thanks for taking the time out from your new home-making to let us know!!!
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Lyme Babs Bart 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 cal/mag lysine hydroxyzine Valium NoIRs cover up low lux home 25D17 Jul08
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Deb Grabetz
Member in Phase 2
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Posted: Thu Jun 26th, 2008 02:29 |
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Yes, Janet wonderful news...When I started MP you were going through a lot of IP yourself but always a role model for those of us starting out...encouraging us "newbies" along the way...I find it such awesome news that you were out cutting the grass, wow! Continued wellness to you!  Deb
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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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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 520 |
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Posted: Fri Jun 27th, 2008 20:00 |
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Oh, never, never apologize for such a wonderful update, regardless of length. It is updates like this that keep me carrying on. I am so happy for you for the quality of life you are now experiencing. I hope one day to join you in being able to say just that about my life.
Blessings to you Janet, 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 3/2/08 to 5/25/08
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