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Adrianne
Member in Phase 3
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Posted: Fri Jul 6th, 2007 17:54 |
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Barb,
Glad to hear that the IP is letting up a bit. I hope that this break from abx will give you a good opportunity to assess the progress that you have made. One day we will all be enjoying reading your glowing progress reports!.
I don't know how you do what you do. In spite of your own difficulties, you are always there for us. Just amazing! You are an inspiration to us all.
Adrianne
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl 25D<7(Mar08) NoIRs limited outings covered
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Sun Jul 8th, 2007 01:13 |
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Thank you All.. 
Sunday July 8th 10am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. yesterday - once before bed.
using meds as above to manage symptoms to tolerable.
immunopathology keeps on coming. using Beconase + Benicar 40mg 3 to 6H + Quercetin TID.
abdomen firm uncomfortable.
GI bloat
esophageal burn continues - when meds taken, relief.
legs scrunching
body very stiff achy
burning milder.
strong gut diaphragm response
feet eyes ears
ankles pufft
toes improving
mucus throat, sensitive, choky. still quietly wheezy.
small lesion R side of nose
wanting to regain some physical ability and a new footing to restart.
Thank you All  one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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melinda
Member in Phase 3
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Posted: Sun Jul 8th, 2007 15:47 |
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Best to you Barb. Hoping it helps to give you a break soon.
Melinda
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Lyme, parathyph86, hepB73, MP 9/04, 125D58, 6/07 D2514, Ph2 02/04, Ph3 3/06, ambien, zanax, NoIRs
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Sun Jul 8th, 2007 22:10 |
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Thank you All..
Monday July 9th 7am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none yesterday.
using meds as above to manage symptoms to tolerable.
all symptoms as above
eyes more blurry, mattery, today
Pain back, shoulders, down L arm to L thumb heel pad. panadol.
strong immunopathology keeps on coming. using Benicar 40mg 3 to 6H + Quercetin TID.
some fragility last evening. eventually settled with extra Benicar and time.
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 346 |
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Posted: Mon Jul 9th, 2007 04:09 |
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Hi Barb,
I'm glad you are managing the immunopathy so well with the other meds.
I hope the break will help you to assess where you are on the road to recovery.
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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Toni D
Moderator
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Posted: Mon Jul 9th, 2007 07:57 |
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| Hang in there, Barb. Your victory is on its way! God Bless.
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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 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Mon Jul 9th, 2007 22:46 |
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Thank you All..
Tuesday July 10th 7:30am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none x 48H. Beconase 10pm Monday (last night)
using meds as above to manage symptoms to tolerable.
all symptoms as above
The need for the beconase has been slowly decreasing while using the Benicar and Q as noted above. I havent wanted to use the Beconase more than I needed to to keep all tolerable, wanting the immunopathology to slow down steadily.
Used Beconase again last night at 48H as my body had become intolerably stiff and some mental symptoms yesterday. << I had opened the door for a short time to experiment and let some sun/warmth in for a change.. it was worth finding out that while I could notice the symptoms, they were managable. noting that I dont usually go out anywhere, and wont be until I have some physical ability to enable me to do so without it being a huge chore for both of us as it is at present.
woke very stiff this am.. panadol and Benicar
eyes
back aches - still unable to stand for a minute eg.
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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vda51
Member in Phase 3
| Joined: | Tue Dec 28th, 2004 |
| Location: | Perth, Australia |
| Posts: | 460 |
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Posted: Tue Jul 10th, 2007 05:52 |
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Hi Barb
I have completed my shift(sort of )at least my computor is on line
Sorry to see you having such a hard time,as with everone else on the board i wish the best for you .,hope we see some improvement in your physical condition in the not too distant future
Thanks for all your help and support as always
PETER
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Reiters Syndrome 10yrs 25D=27 1,25D=43/ Crp56.33/ WCC8.7/ lymphocytes 1.2/ BP 91/59 NoIRs/ LIGHT & D AVOID| Beni Mar05 Mino Apr05| FEB O8 25D=6 DEMI 112MG
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Aussie Barb
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Posted: Wed Jul 11th, 2007 03:45 |
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Thank you All..
Wednesday July 11th 12:30pm
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none x 48H. Beconase 10pm Monday and then 24H - Tues night
using meds as above to manage symptoms to tolerable.
all symptoms as above
I left the door open for sun warmth again yesterday and symptoms all managable using the Beconase, benicar and Quercetin.
Decided to use the Beconase last night (24H) - and I slept better.
eyes are blurry, glary. tolerable to me. wouldnt be to anyone 'normal'. I havent regained my ability to read books etc so eyes arent a problem.
gut diaphragm response remains strong.
esophageal burning helped by meds and meals.
no anxiety or fragility.
skin on hands is wrinkled as if some shrinking may be happening.
also the sunspots on my hands which go powdery white and raised sometimes -presumably is indicative of action, are doing so.
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Wed Jul 11th, 2007 23:03 |
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Thank you All..
Thursday July 12th 8am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none x 48H. Beconase 10pm Monday and then Q24H - last night
using meds as above to manage symptoms to tolerable.
all symptoms as above
slept well between wakes for benicar.
some pain in neck muscles and back and going down my arms. panadol.
face: small invisible tremor L cheek
L foot had electric jigs before I got up too.
Pre MP I used to wake from any rest or sleep with an increase in symptoms. Each morning I wake needing extra Benicar irregardless of how long since the previous dose or I am choking and coughing. must be the helpful effect of sleeping resting on my immune system.
Thank you All one moment at a time
burning
Lower GI inflammation
GI bloat
later: face: tremor R cheek
2 puffs Beconase each nostril before bed
will use again in am.
Last edited on Thu Jul 12th, 2007 14:13 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Jul 12th, 2007 22:38 |
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Thank you All..
Friday July 13th 7:40am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none x 48H. Beconase 10pm Monday and then Q24H - last night 2 puffs each side and this morning 1 puff each.
using meds as above to manage symptoms to tolerable.
One advantage I have become aware of since going off abx, is that of the lifting of the mental pressure of constantly managing the abx dosing to manage the immunopathology.
all symptoms as above
wakeful early in the night and took Benicar then slept well.
Inflammation had built to too much by yesterday so have increased the beconase, and is back to tolerable again this morning.
aching boots
eyes, blurry, burny, glary.
achy body
gut diaphragm response
burning
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Sat Jul 14th, 2007 02:59 |
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Thank you All..
Saturday July 14th 12MD
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none x 48H. Beconase 10pm Monday and then Q24H - then 12H and more frequently last 12H
using meds as above to manage symptoms to tolerable.
all symptoms as above
slept between Benicar wakes. when I woke: each time I blinked I could see a spark of light in my eyes. shrug.
Inflammation had built to too much yesterday so no more open door/ warm sun in - have increased the beconase, and is coming back to tolerable.
achy body, neck, base of skull. mild headache.
gut diaphragm response
burning
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Sun Jul 15th, 2007 08:01 |
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Thank you All..
Sunday July 15th 5pm
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July
was Q6Hish and then TID for 2 days. then once x 1 day. none x 48H. Beconase 10pm Monday and then Q24H - then 12H and more frequently 14th. 12H today
using meds as above to manage symptoms to tolerable.
all symptoms as above
at bedtime -abdomen firm, uncomfortable.
slept between Benicar wakes.
gut diaphragm response strong
burning is improving some
back weakness a little better
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Mon Jul 16th, 2007 02:44 |
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Thank you All..
Monday July 16th 11:40am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves BID yest
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July now Q12H
using meds as above to manage symptoms to tolerable.
all symptoms as above
last night -some anxiety - quercetin was the only med I am using that I hadnt taken so took Q and settled.
slept between Benicar wakes.
have some dyslexia showing thru typos I have to correct.
The immunopathology does seem to be settling some yest and today. what I am wanting, and hopefully, will be a gradual result of that, is more physicality. to be able to walk, move, 'do', have flexibility etc like anyone expects to, without the burden of swelling, inflammation..
Thank you All one moment at a time
this afternoon: strong gut response, right thru back - used all meds to rein it in.
Last edited on Mon Jul 16th, 2007 11:47 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
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Posted: Mon Jul 16th, 2007 06:08 |
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I have been asked "could you tell me what you mean when you list the symptom "gut diaphragm response?" I have not herd of this before and would like to know what it is."
This is a symptom of immunopathology that I have had ever since I started Benicar.. is in my diaphragm and/or gut area.
It is difficult to describe.. I first described it as feeling like the presence of a hive of bees buzzing, not biting.. it feels some like a permanent labor contraction, fullness, tightness, pressure, but obviously, is managed to tolerable by using my meds.
Thank you for asking. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Jul 17th, 2007 08:57 |
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Thank you All..
Tuesday July 17th 6pm
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July now Q12H
plan to use Q6H reg
using meds as above to manage symptoms to tolerable.
all symptoms as above
slept between Benicar wakes.
not a good day - mentally - Quercetin helps
physically no progress
have decided to set an alarm for regular dosing of beconase 'whether I need it or not' instead of doing prn. I am always trying to avoid taking meds.. may try Q6H first
gut diaphragm response
abdomen firm uncomfortable
back ache
GI bloat
eyes glary
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Wed Jul 18th, 2007 01:19 |
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Thank you All..
Wednesday July 18th 10am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July now Q6H reg
using meds as above to manage symptoms to tolerable.
all symptoms as above
slept between Benicar wakes. dreams.
a bit low and slow
pressure ache R nostril, eyebrow, top teeth today.
abdomen firm and uncomfortable
gut diaphragmic response
eyes glary
very achey body
continues to be great effort required to get up from chair.
Legs continue scrunchy at night
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Jul 19th, 2007 09:57 |
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Thank you All..
Thursday July 19th 7pm
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves TID
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July today Q8H reg
using meds as above to manage symptoms to tolerable.
all symptoms as above
slept between Benicar wakes.
I woke with a headache R side. like a tight band but not a bad headache.
realised that my body was needing beconase as yesterday was the tail end of the container. hence the down day yest. started new spray pak today. better than yest but pacing myself to manage.
back more scrunchy last night
Thank you All one moment at a time
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Fri Jul 20th, 2007 22:37 |
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Thank you All..
Saturday July 21st 7:30am
Benicar 40mg Q3-6H and halves as needed
Quercetin - halves prn - 1 yesterday
Tylenol (panadol) 1 or 2 @ night and prn
Sunday 1st July 2.30am: was last abx
Beconase 1 puff each nostril started 6pm Monday 2nd July today Q8H reg
Thursday 1 puff in 1 nostril since change to new pak. Q8H contd. seems to be ok.
using meds as above to manage symptoms to tolerable.
all symptoms as above
mostly slept between Benicar wakes. some awake times.
R big toe still inflamed and sore with bedclothes weight. Has gone on too long. have to ask podiatrist to anesthetise and explore.. will be here in 2 weeks.
The podiatrist does my feet and toenails every 6 weeks and has been operating on this nearly every time she is here.. it is time for a bigger look.
no headache
body ache high level
gut diaphragmic continues, sometimes more on L, and sometimes more on R.
throat is always irritable, likely to cause cough/choke
esophageal burn continues- managing with meds and meals
eyes and ears
sinus mucus when meds due
body puff
legs more scrunchy
twitches in R calf
I walked a few steps outside to the car in the carport to look at something, and I am shocked each time I try to do anything like this, to be faced with exactly how dreadful I feel. weak and unable. - and then the mental pain as I struggle to come to terms with my unexpected place in the world.
Have been processing some grief re physical: the dreams and expectations of would have been, could have been, should have been - have to be processed.
then it occurs to me that I am lucky to have mental and emotional stability and great support and that I can do this, am doing this... with an enormous amount of support... for which I am so highly highly appreciative.
Thank you All one moment at a time
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Morris W. Milnes
Member
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Posted: Fri Jul 20th, 2007 23:16 |
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We love you Barb. I wish this was going better for you. You are in my prayers.
Morris
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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