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Aussie Barb
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| Location: | Australia |
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Posted: Mon Jan 16th, 2006 21:37 |
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Tuesday January 17th 7.55am / level .5 / day 9 / mino > 50mg Q12H / Benicar 40mg Q6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
hairdresser came to house. hair trimmed.
so far same. mino is holding me.
watching and waiting to make abx change.. am at day 9 now.
nauseous after shower.
went to bed early. very tired. slept very well. woke once for Benicar.
wheeze cough sob chest mild enough today. increases when meds are due. speaking causes coughing.
body herx tolerable. best to sit.
feet swollen. hot spot top of left foot.
gut herx
eyes blurry, cant see clearly. bloodshot, glazed. deepset. black circles.
BO chemical
legs and seat drawing.
rib and neck muscles grab and cramp
subcutaneous ouch
itchy face and scalp
oily face and hands
5pm note: can feel myself slipping into depression despite the mino and Beni etc so it is coming close to the time of needing the 2nd abx.
7pm: Lips are starting to dry out. tingly.
8pm: gut herx and wheeze starting to rise. watching the process. I dont want to go in with the added abx too soon.
Note: Since being on MP, I have some small spots on the tops of my hands. sometimes visible as small whitish flaky spots, mostly not visible, they can be barely felt. I think they are sun spots that are being or at least I expect will be healed by the MP.
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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
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Tue Jan 17th, 2006 18:45 |
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Wednesday January 18th 4.45am / level .5 / day 10 / mino > 50mg Q10H / Benicar 40mg Q6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino lasting less than 12H. last night it settled the depression some time later.
see notes in above post.
watching and waiting to make abx change.. am at day 10 now.
very tired. slept very well. hands numb thru the night.
woke early for Benicar and thought I had better take it to avoid cramps.
woke 1 hour later in the closest precramp cramp I have had and managed to get out of bed quickly and stamp it out. good to avoid the excruciating cramp.
Bone pain in arms and other muscle spasms.
Took mino 9H and staying up till I settle again.
other symptoms same as above.
note: mino 50mg 1pm (10H) to stop the slide to depression. gut herx high enough. pressure in glands in neck rising.
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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
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Jan 18th, 2006 23:15 |
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Thursday January 19th 9.15am / level .5 / day 11 / mino > 50mg Q10 to 12H / Benicar 40mg Q6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino @ 10H yest and 12H overnight.
watching and waiting to make abx change.. am at day 11 now.
managing as long as I can on mino only. the herx symptoms are jumping all over the place. I would normally have taken the 2nd abx but can put up with this for now to make the change.
Had to get dressed in day clothes yesterday, and I need help. this is when reality hits me as to how sick I am and I can be very depressed for a while then.
slept very well.
Had a near cramp experience again thru the night. took mino.
other symptoms same as above.
Note: mino 50mg @ 18H 7.30pm
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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
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Posted: Thu Jan 19th, 2006 23:03 |
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Friday January 20th 9.05am / level .5 / day 12 / mino > 50mg prn / Benicar 40mg Q5 - 6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino @ 18H yest.
watching and waiting to make abx change.. am at day 12 now.
managing as long as I can on mino only. the herx symptoms continue to jump all over the place, and sometimes rise higher, and I take the Beni or Q whatever is due(ish). I would normally have taken the 2nd abx but can put up with this for now to make the change. I take the Benicar sooner when I need to.
slept very well. 6H.
symptoms include body herx, wheeze, gut, bone pain, precramps, oily face and hands etc
other symptoms same as above.
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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
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Posted: Fri Jan 20th, 2006 13:33 |
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Friday January 20th 11pm / level .5 / day 12 / mino / Benicar 40mg Q5 - 6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino 50mg @ 18H and then another 6H > mino 25mg
watching and waiting to make abx change.. am at day 12 now.
Today:
body starting to hurt.
IBS
R knee
R sciatic nerve
wheezish feel to chest.
chokey cough did it. had beni and etc. had to have the extra mino dose.
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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
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Posted: Fri Jan 20th, 2006 13:37 |
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A number of things today have set off a parade of past symptomatic situation memories.
Where it came from included:
thinking about denial. thinking about expectation and reality. of the need to survive.
a friend with Lupus went to a Cardiologist who asked her why doesnt she work.
I saw a movie.
a news item about 20 years imprisonment.
I have been feeling the darkness of my debility.
and
My husband had visited some Family and Friends today, away from here.
and people are wanting to know how I am and what is really wrong with me.
It is really something to try to explain what is wrong and how it affects me.
How do you.
There does not seem to be any way that adequately explains what has been called a Life, what has appeared to the outside to be a Life.
I am not sure how to explain it myself.
who can possibly know unless they have this or unless they live with us.
The Parade of Memories has been a type of inventory and acknowledgement of the truth of how sick I have been for a very long time.
These memories went back and back and back.
I was able to view them all very calmly. and acknowledge the truth as I saw it.
acknowledge how long this has actually been evident. before I finally fell down.
Previously when I have had memories it was with some agony and a gasp. not this time.
I am more able to acknowledge that I do have a Lifetime of healing to do. perhaps not even fully comprehend even yet.
pre MP I would go to an indoor swimming pool and take care to only walk slowly for 10 minutes in the pool, and then I could hardly get out of the pool so I had to give that up. There was probably light exposure in that as well.
I was trying so hard to be normal and to get well.. It wasnt working. but people wanted to know I was trying, and doing something, anything. nobody knew how hard it was. I havent wanted to remember either.
Now I am no longer trying in that sense.
No longer needing to fulfill unreal expectations. of mine or others.
I am working on MP
in a darkened house
I am sick. reality is, I was already sick.
I can count up improvements. that are not obvious to my Family.
I am watching and waiting till I have that incentive and the get to it that I know and trust is coming when the time is right. and then I will not be held down.
I have shared this because I know how it can make a difference to hear it from another.
Thanks to All of you who have shared with me.
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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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Aunt Diana
Moderator
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Posted: Fri Jan 20th, 2006 19:30 |
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I so feel for you, Aussie Barb, because I know exactly what you mean and how you are feeling right now. You are a very strong person, however, and if anyone can overcome this illness that you have, I am convinced it will be you
The hardest part of this illness is the loneliness and lack of understanding one gets from people you would expect more from. That is what bothers me the most when I start to feel discouraged. It's difficult enough, having to be sick, but having to explain and defend oneself is even more intolerable.
Remember, you're probably herxing, one day soon some wonderfully encouraging thing will happen to you and you will become optimistic again. Many people are rooting for you and need you to get through this.
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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. Feb 08 Phase 3. 6/08 D <4, D1,25
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katydid
Member in Phase 2/3
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Posted: Fri Jan 20th, 2006 21:52 |
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Thank you so much for sharing that! People make you feel so guilty, don't they? I don't believe that they always mean to, but the result is that you deny your feelings of illness so that you can keep on going in a "normal life". It gets less and less normal as you go on, though.
When you finally do stop pretending to be well , it is really, really hard, and painful, to admit that you are really ill.
Thanks again,
Kathy
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CFS.D's 12/05 25D-7, 1,25D-19,not Quest.Vicodin 10-325 1 PRN.Flexeril 10 mg qday.Westhroid 60 mg.12/27/05 Avoid sun,D Noir's.
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sat Jan 21st, 2006 05:28 |
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Thank you to All...
Saturday January 21st 3.30pm / level .5 / day 13 / mino / Benicar 40mg Q5 - 6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino 50mg @ 20H after 25mg 3.30pm
watching and waiting to make abx change.. am at day 13 now. ho hum.
eyes
shoulder paresthesia
R knee
R sciatic nerve
very tired day. resting.
body herx / aura increasing
mucus in throat
burning in esophagus. etc. had beni and etc. time to have the mino dose.
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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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ShrnHml
Member in Phase 2/3
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Posted: Sun Jan 22nd, 2006 02:49 |
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To all:
That is the hard part.....the fact that no one understands. It increases the isolation and the feeling of having to stand alone in the hurricaine with no support....nothing to hang on to to remain strong and upright.
Add that to the grief we feel for our lost lives and the guilt we feel for not being "able".
We are all heroes! We are also SURVIVORS.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sun Jan 22nd, 2006 03:37 |
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Thank you All ...
Sunday January 22nd 1.30pm / level .5 / day 14 / mino / Benicar 40mg Q5 - 6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino 50mg @ 22H 1.30pm
watching and waiting to make abx change.. am at day 14 now.
eyes
both shoulders and back today
tired day. a bit restless.
body herx / gut herx / diaphragm increasing
mucus in throat
burning in esophagus. etc. had beni and etc. time to have the mino dose to keep all tolerable level..
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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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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
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Posted: Sun Jan 22nd, 2006 04:14 |
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Hello, Barb!
Please know that you are on our minds and in our hearts! There may be those around you who may not understand, but please feel the long-distant vibes from those of us who do!
You have given us hope and encouragement, so now it's time for you to take care and remain positive as you focus on healing. I feel that revisiting our past problems, while coping with new, unexpected issues, can be both scary and frustrating; but we realize this is the rugged road we must follow.
Best wishes for soon-to-be better days! We're with you!  . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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scooker48
Member in Phase 3
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Posted: Sun Jan 22nd, 2006 18:17 |
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Barb,
I can merely add my voice to what's already been said.
You are not alone.
We are all holding hands in a rocking boat. However, the shoreline is in sight and we will soon return to our safe port.
"I have inherited the body of a God." Buddha
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 5/9/09 D25, D3 6; D25 D2 <4, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal.
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Aussie Barb
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Posted: Sun Jan 22nd, 2006 23:20 |
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Thank you All ...
Monday January 23rd 9.20am / level .5 / day 15 / mino / Benicar 40mg Q5 - 6H, day and night / MT / Quercetin TID / PBX BID/ Phase 2 Aug05
Mino 50mg @ 22H 1.30pm yest and extra 25mg @ 10pm last night for chokey
watching and waiting to make abx change.. am at day 15 now.
symptoms beginning to rise last couple of days.
pressure in bottom is a tell tale sign of time to move on.
antbite cramping even after I have taken all meds.
gut uneasy.
is all getting toward intolerable. so I will add first of the new abx.
mino 25mg + new abx. 9.20am
eyes look exactly like 2 black eyes of the best kind.
are blurry.
both shoulders and back.
tired day. a bit restless.
body herx / gut herx / diaphragm increasing
mucus in throat
burning in esophagus. etc.
swollen feet havent gone down in the changeover time. I thought they may do.
Face and hands oily. face itchy.
BO.
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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: Mon Jan 23rd, 2006 06:32 |
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Barb,
I'm with you and hope you feel better soon. I was talking to my friend Michelle in QLD today and commented on how small the world seems now. Two strong sources of support and comfort both come from the other side of the world. Isn't this amazing. Thank you for being there for me whenever I am distressed and down.
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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Aussie Barb
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Posted: Mon Jan 23rd, 2006 18:36 |
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Tuesday January 24th 4.30am / level .5 / day 16 / mino 50mg Q12H / Day 2 new abx/ Benicar 40mg Q5 - 6H, day and night / MT / Quercetin checking need / PBX BID/ Phase 2 Aug05
Day 15: added very small dose of 1st new abx + 25mg mino to begin.
I was sure I was being a wimp when I looked at the small dose we had prepared last week ready for this day.
symptoms changed. ache at base of skull
felt it moving around body. interesting ups and downs. times of 'I wonder if this is actually having any effect yet.' and times of 'is this herx'. and then knowing for sure that I was pleased I hadnt taken more than I had.
some bone pain in arms.
gut changed and then increased. I watched it and took Benicar and other meds.
quite woozy for anything other than sitting. body herx.
required extra Mino 25mg later, wasnt enough to hold the herx, then took mino 50mg 9pm yest
decided that I was still going to require 50 mino to hold the herx.
still some mild antbite cramping ribs and arms.
slept 4H. gut high herx. time for Benicar. relief.
out of bed.
productive cough !!! (nothing wrong with my lungs - I have CFS. but cough wheeze)
diaphragm.
Managing all well with the meds.
other symptoms still the same.
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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
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Posted: Mon Jan 23rd, 2006 18:57 |
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Thank you All for your responses to my Parade of Memories post.
I want to say that I am not sad, and that I am not suffering.
But when I go to say that, I know that is not the Truth..
The truth is that inside me I am..
and it has come out in the open there. I hadnt realised.
For me the Parade of Memories was a calm realisation of the truth of - I have been very sick for a very long time. that I was sick then, and then, and then... and that I am sick now. oh I see. (however belated that may sound now)
To be able to manage and to be content and to not live in that sadness and grief,
I live my Life in the Moment, applying myself to this moment, keeping away from any expectations and obligations, - to enable me to focus on what is important now. and, I am very fortunate to have the love and support of my Husband and Family and All here.
and I am mostly able to remain content and happy. (except when a herx carries me off)
then it is quick get the benicar, the mino, the lot.. and back to tolerable again.
8am: adding a later reflection: in the end, all of the above means that denial is still safer and more comfortable at the moment. haha...
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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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CJ
Member in Phase 3
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Posted: Mon Jan 23rd, 2006 21:42 |
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Aussie Barb wrote:
tolerable
That ever-present most-important word.
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Saroidosis/lungs, 25D7 (8/07) Spireva,Ibuprofen, NoIRs, lite exp r/t work
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drvikki
Health Professional
| Joined: | Fri Jun 24th, 2005 |
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Posted: Tue Jan 24th, 2006 00:59 |
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Dear Barb,
I just read your recent emails including your Parade of Memories, and I wanted you to know that your strength does show through all the while acknowleding how sick you have been for a very long time.
Your comment about the gasping when realizing the depth of your illness is very familiar. The fact that you could acknowledge these truths calmly speaks volumes. I still am experiencing the gasps and found your sharing very helpful. I realize it's ok to be in denial and that the time will come when I too can look at these things more truthfully to myself. Your post was helpful on many levels.
Thank you for sharing your truths,
Vikki
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Lyme 19 yrs/back neck pain diges headaches fatigue tachycard tinnitis| Nov04 D1,25=65 D25=26/Jun07 D25 = 4 light avoid NOIRS/K cream/PH2 11/7/05/ PH3 6/8/06/probiotics/milk thistle/progesterone cream - 1/8 tsp bid/ambien/benadryl/quer prn
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Aunt Diana
Moderator
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Posted: Tue Jan 24th, 2006 16:04 |
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Dear Aussie Barb,
Something that you and Dr Vikki have said makes me think about "grieving" and that usually we grieve for the loss of another. But in our cases, we grieve the loss of the person we used to be, and the pain and suffering we must endure....And the fear for the future because we cannot be sure what each day will bring..
It is a difficult and arduous life but since I have found the MP and people like you it has been much easier for me. Aren't we fortunate to have each other to help in going through this ordeal.?
As Tiny Tim says, God Bless us everyone.
____________________
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. Feb 08 Phase 3. 6/08 D <4, D1,25
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