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Aussie Barb
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Posted: Sun Aug 19th, 2007 23:38 |
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Thank you All for your kind and thoughtful support.. 
Monday August 20th
While I cannot do the physical things I would like to do, I am able to use my meds to manage symptoms to tolerable. I have a very big job to do to recover. there is nothing else to do. I have to be patient, and luckily, I am able to be because of the support I have.
I am so very thankful and appreciative - without this support I would not be able to manage.
Thank you All  one moment at a time... 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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Sunbeam
Member in Phase 2
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| Location: | Perth, Australia |
| Posts: | 346 |
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Posted: Mon Aug 20th, 2007 06:20 |
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Way to go Barb,
I hope you can enjoy the limited activities that you can do as you recover as it makes life abit more bearable.
Take good care of yourself, God Bless, 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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kathleen
Member in Phase 2/3
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Posted: Mon Aug 20th, 2007 08:14 |
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Dear Barb,
I have to remind myself continually that following the MP is actually doing something. Even when I lie in bed and watch inane TV, I'm (we, all of us are) participating in something incredibly important in addition to working towards our own health.
And on top of that, you help so many of us so much.
Patience can be very elusive, but it does come back again and again.
Of course we all wish that it would take less time - thank godness we started so long ago and are part way there!
Love, no giving up, XXOOO Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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Adrianne
Member in Phase 3
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Posted: Mon Aug 20th, 2007 17:52 |
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That's right Kathleen. We are all VERY BUSY killing bugs, not to mention that we are all contributing to the study of one of the greatest medical breakthroughs in the history of mankind (IMHO)
Barb, you are one very busy person, selectively expending your energy on THE IMPORTANT THINGS!
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl 25D<7(Mar08) NoIRs limited outings covered
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Deb L
Member in Phase 3
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Posted: Mon Aug 20th, 2007 21:31 |
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Barb,
Your so right, the support is imperative to healing and all well being.....I don't know how people do this alone.
I too am a very lucky person to have strong advocate of support and love.
Hugs
Deb.
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RA Ph1Oct06 ModPh2Nov06 Ph2Feb06 Ph3Jan07 25D15.2(Jan09) D2518(May07) 25D22.5(Dec07) clonazepam Advil Noirs progesterone, estrogen
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Aussie Barb
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Posted: Mon Aug 20th, 2007 22:26 |
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Thank you All..
Tuesday August 21st 4.30am
Benicar 40mg Q4 to 6H - halves inbetweeners prn.
Quercetin - halves (250mg) TID
Tylenol (panadol) 1 Q6H
July 28th dexa started
dexa 0.25mg Q6H not taking bedtime now.
Mino increase to 50mg last night 9pm - reassessing schedule
mino 50mg 5.30pm
Aug 17th: started 1/4 2nd abx QOD: # 3 dose due
using meds as above to manage symptoms to tolerable.
wakeful after 2am -hot, calf quivers. up.
usual symptoms as previously noted.
transient R thumb tremor and slight 'tic' in chewing resulting in cheek bite.
feet, lower legs ache
woozy head
high level gut immunopathology yesterday.
hungry. lower GI pressure.
signal signs to increase med.
butt aches/hurts to sit on chair
something I havent been aware of for a while. the double ahah intake inspiration of air. my mother used to comment on it when I was a child.
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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Aussie Barb
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Posted: Wed Aug 22nd, 2007 00:45 |
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Thank you All..
Wednesday August 22nd 6.50am
Benicar 40mg Q4 to 6H - halves inbetweeners prn.
Quercetin - halves (250mg) TID
Tylenol (panadol) 1 Q6H
July 28th dexa started
dexa 0.25mg Q6H during the day and 0.5mg 5pmish
Mino 50mg + 1/4 2nd abx at 2am # 3 dose
mino 50mg 3pm and 9pm bed
using meds as above to manage symptoms to tolerable.
slept between wakes for meds - dreaming
2 am: L heel cracky and then some in R heel - resolves when I take the abx.
usual symptoms as previously noted.
transient R thumb tremor and constant slight 'tic' in chewing resulting in cheek bite.
eyes gummy
ears - still leak, crust, but less recently.
skin wrinkly as if puff may be lessening?
thick head, ache, sinuses.
throat, jaws, mild ache, sore
esophageal burn
lower GI pressure
butt aches sitting on chair
back aches against chair.
physical exhaustion as usual.
muscle knot under chin when yawning had to be pushed undone again - ouch.
neuro paresthes feet
gut immunopathology - esp R side going around to back, puts pressure on diaphragm.
teeth numbish
physically pushed
possible puff decrease in arms ?wrinkles
feet less pufft
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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SherryH
Member in Phase 2/3
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Posted: Wed Aug 22nd, 2007 03:16 |
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Hang in there, Barb! We are all pulling for you and keeping you in our thoughts and prayers. It is amazing what the immune response can do, eh? I remember that double breath thing too. One of my son's does it as well.  Take great care..............Sherry
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Pacemaker 2001: sinus node exit block; subcutaneous lumps; acid reflux; thyroiditis; neck pain| 6/06-125D/25D: 82/25; 9/07 25D: <4 8/1/06 reduce D, NOIRS, pepcid; 9/29/06 Beni 10/14/06 PhI; ModPh2 3/07
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Aussie Barb
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Posted: Wed Aug 22nd, 2007 23:10 |
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Thank you All..
Thursday August 23rd 5am
Benicar 40mg Q4 to 6H - halves inbetweeners prn.
Quercetin - halves (250mg) TID
Tylenol (panadol) 1 Q6H
July 28th dexa started
Mino 50mg + 1/4 2nd abx at Wednes 2am # 3 dose
New plan today: dexa 0.5mg 4am: 0.25mg- 10am: 0.5mg 5pm
mino 50mg dose ?Q12H... 8am today for lower GI pressure
plan to take combination earlier to try to aid sleep. taken 5pm. # 4 dose.
using meds as above to manage symptoms to tolerable.
wakeful night- up w esophageal burn.
usual symptoms as previously noted.
high level gut immunopathology esp R side
abdo firm, uncomfortable, heavy.
transient R thumb tremor
eyes gummy
skin wrinkly as if puff may be lessening?
neuro paresthes feet
parethes hands transient
feet less pufft
notice that blood vessels on L hand are raised.
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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Aussie Barb
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Posted: Thu Aug 23rd, 2007 20:52 |
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Thank you All..
Friday August 24th 3am
Benicar 40mg Q4 to 6H - halves inbetweeners prn.
Quercetin - halves (250mg) TID
Tylenol (panadol) 1 Q6H
July 28th dexa started
Mino 50mg + 1/4 2nd abx at Thurs 5pm # 4 dose
dexa 0.5mg 7.30am: 0.25mg- 12MDish: 3pm 0.25mg 0.25mg 5pm
mino 50mg dose Q9H... 2am 2pm
using meds as above to manage symptoms to tolerable.
slept between wakes. boots aching. wakeful from 1 am. up 2am to 4am.
usual symptoms as previously noted.
more evidence that swelling is slowly decreasing:
eyes: still glazed and bloodshot, black rings, gummy.
.but I can open them further. can see some eyelid when I do.
was able to read a little from a magazine before becoming exhausted.
.an almost crease in L upper arm
.feet and ankles small amount less pufft
blood vessels on L hand are raised.
12MD
Of course I am using a lot of meds to palliate the immunopathology, but it is not as intense this morning. dose # 4 at this level with frequent 50mg mino.
increased to: High level gut immunopathology R side, into shoulder, returned.
extra dexa at 3pm. can feel it dampen some but still high. more dexa 5pm. more Benicar.
dexa 0.25mg 11pm
Saturday 1am: wakes between sleeps. wake hungry. Benicar.
2am gut immunopathology
Thank you All one moment at a timeLast edited on Fri Aug 24th, 2007 20:18 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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Sunbeam
Member in Phase 2
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Posted: Fri Aug 24th, 2007 07:55 |
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Hi Barb,
I'm glad to see you were able to read a little as I know this has been a problem for you in the past. I pray this is turning a corner for you and that you may infuture be able to enjoy that pleasant past time.
I'm glad things are more tolerable at present and pray they will steadily improve for you.
Blessings 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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Aussie Barb
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Posted: Fri Aug 24th, 2007 21:25 |
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Thank you All..
Saturday August 25th 3.30am
Benicar 40mg Q2 to 6H - halves inbetweeners prn. will start setting alarm for Q4H instead of Q6H.
Quercetin - halves (250mg) TID < > may now be able to stop Q using extra dexa.
Tylenol (panadol) 1 Q6H
July 28th dexa started
Mino 50mg + 1/4 2nd abx at Thurs 5pm # 4 dose
mino 50mg dose prn: last yest 2pm
dexa 0.5mg 3.30am, needed 8.30am, needed 12MD, increasing again in gut 5pm, 10.30pm.
using meds as above to manage symptoms to tolerable.
Saturday 1am:
wakes between sleeps. wake hungry. Benicar.
abdomen firm, uncomfortable
2am gut immunopathology
esophageal burn
forget to say head hurts when pressing onto pillow to move in bed.
face itch, oily, soft, no sandpaper now.
I had been suffering woozy head and wasnt sure where that was coming from, wondering if it was the dexa, so was holding back on it. but is not, with the increase of dexa, using as required and stopping the abx.
usual symptoms as previously noted.
evidence that swelling is slowly decreasing:
eyes: gummy, still glazed and bloodshot, black rings.
.but I can open them further. can see some eyelid when I do.
since I have adjusted the dose and schedule of the dexa I am more able to feel how the immunopathology builds if extending the schedule, despite using the other meds, Benicar etc.. and decreases when I take the dexa dose. Abx have been giving palliative effect and also increase in the immunopathology. Have had to use much more Benicar last night. more adjusting to do yet, as far as am using the dexa more and the abx less.
Thank you All one moment at a timeLast edited on Sat Aug 25th, 2007 15:56 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
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Posted: Sat Aug 25th, 2007 23:26 |
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Thank you All..
Sunday August 26th 5.30am
Benicar 40mg Q3 to 6H as required
Quercetin - halves (250mg) no more since using extra dexa.
Tylenol (panadol) 1 Q6H
July 28th dexa started
Mino 50mg + 1/4 2nd abx at Thurs 5pm # 4 dose
mino 50mg dose prn: last, Friday.
2nd day of regular dexa and benicar only
dexa 0.5mg 3.30am (5H) 9.30am (6H) 3pm (5+H) 8.30pm
using meds as above to manage symptoms to tolerable.
some anxiety before bed and thru night, settled w dexa and Benicar at appropriate times. Q would have been used TID previously to manage this. No Q at present.
wakes between sleeps. no hunger. Benicar Q4H. up at 4am. (a sleep in)
abdomen firm
gut immunopathology present as usual. the inflamed areas down R side and L diaphragm esp.
esophageal burn when meds or meals due.
aching boots more pronounced when meds are due.
when doing the abx again, been forgetting to report transient myoclonic jerks, similar to the cheek biting when chewing. and the tremor in the R thumb.
face: can feel the swelling is going.
usual symptoms as previously noted.
ears less ooze
eyes gummy
the immunopathology starts to build and I take the dexa or the Benicar. whichever is closest to 'due'. I am happy with this management. It is keeping all more even. I do get to too much pain in my back and ribs and head before I remember the panadol sometimes.
Although there is no actual physically functional improvement as yet, I can see and feel that this management is catching up with the inflammation, and is slowly decreasing it throughout my body.
We drove out to buy an icecream treat last night (drive thru in my nightie) and I could feel how fragile I am when doing this.
Thank you All one moment at a time
afternoon: R side high level immunopathology. using Benicar and dexa.
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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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SherryH
Member in Phase 2/3
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Posted: Sun Aug 26th, 2007 04:17 |
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Barb,
Sounds like good news here to me. A greater undersanding of how to manage symps with beni/dexa/panadol, some consistent and slow decrease in inflammation and pufft, AND, you got out for a treat!! Though not yet at the relief you are seeking, does seem encouraging progress toward that goal at the moment. You have an amazing ability to persevere, stay focused and calm in the midst of IP and discern what needs to be done next for yourself. I'm always so impressed by this. I'm hopeful and confident that your goal is in sight, Barb....and you are in my prayers for this to happen sooner, as always.
Take care and thanks for all you do...........Sherry
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Pacemaker 2001: sinus node exit block; subcutaneous lumps; acid reflux; thyroiditis; neck pain| 6/06-125D/25D: 82/25; 9/07 25D: <4 8/1/06 reduce D, NOIRS, pepcid; 9/29/06 Beni 10/14/06 PhI; ModPh2 3/07
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Aussie Barb
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Posted: Sun Aug 26th, 2007 22:14 |
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Thank you All..
Monday August 27th 4.30am
Benicar 40mg Q3 to 6H as required
Quercetin - halves (250mg) no more since using extra dexa.
Tylenol (panadol) 1 Q6H
July 28th dexa started
Mino 50mg + 1/4 2nd abx at Thurs 5pm Today 82H (too long) 3am # 5 dose
2 days of regular dexa and benicar only
Today: dexa 0.5mg 2.30am (5H) 8am weak back (5+H) 12.20pm (4+H) 5pm (4+H) 9pm (4H0
11am gut immunopathology increasing. benicar first- 1H some relief and then another rise - dexa.
using meds as above to manage symptoms to tolerable.
afternoon: R side high level immunopathology. using Benicar and dexa. watching, assessing. it was 72H post abx dose, was assessing re dexa and Benicar only use to see if it would suffice. I thought I may have left it too long to take them. >>
Severe weakness in back (I call it broken back symptoms) before bed, and thru night, not settled w dexa and Benicar alone. has always been a sign of needing the abx.
Slept 5H! and woke with tolerable cramp R foot (another sign), and back still weak and feeling 'dangerous'. was afraid to move for fear of causing damage. took dexa and Benicar to assess response. hunger. got up. back still weak, took abx.
abdomen firm
R esp gut immunopathology present as usual.
diaphragm
less chokey coughing
heavy gravity continues
when doing the abx again, been forgetting to report transient myoclonic jerks (legs), similar to the cheek biting when chewing. and the tremor in the R thumb. will see if this is still present.
usual symptoms as previously noted.
eyes gummy
neuro feet
GI bloat
the immunopathology starts to build and I take the dexa or the Benicar. whichever is closest to 'due'. I am happy with this management. It is keeping all more even. I do get to too much pain in my back and ribs and head before I remember the panadol sometimes.
Although there is no actual physically functional improvement as yet, I can see that this management is catching up with the inflammation, and is slowly decreasing it throughout my body. some more wrinkles or creasing in legs eg.
Thank you All one moment at a timeLast edited on Mon Aug 27th, 2007 14:35 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
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Posted: Mon Aug 27th, 2007 17:36 |
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Monday continued:
wakeful 10.30pm. up again. extra Benicar(40mg @ 2H). high level gut immunopathology. dexa 0.5mg (3H) 12mn,
Tuesday: 5am (5H) 8.30am weak back/ gut build (3+H) 12.30pm gut build (4+H) 4.30pm gut build GI pressure (4+H)
Observing and experiencing the changes to the level of immunopathology while using the dexa, has had an effect on me.
The immunopathology is more definable - with the effect I am shocked at the high level. Using dexa, I am more aware of the amount of Benicar and meds that I have been having to take to keep this managed. and am still having to take.
and I am shocked that my body now seems to be maybe starting to be able to function to throw off this excess pufft inflammation that is all of me, all of me. It has been very difficult for me to live in this body, both pre MP and increasingly thru MP, and to think there is a way out of it, and what has happened to me is shocking and there is a grief process involved in it.
The active immune system is my body fighting for my Life. Knowing that I am able to trust the process as it took me along the Journey hasnt always been easy. It is more easily seen in retrospect. has had to be a conscious choice, and has been a definite commitment.
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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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Joyful
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Posted: Tue Aug 28th, 2007 06:11 |
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Barb,
I can so relate to your description of shock and grief in response to realizing how far your body has gone. This is familar territory for me too. For a while, I was thinking, well, this has only been 2 years of illness... until I went back over my medical history. Lots of signs.
What a relief to now see a change in direction... for the better.
~Joyful
Last edited on Tue Aug 28th, 2007 06:13 by Joyful
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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LH1953
Member in Phase 3
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Posted: Tue Aug 28th, 2007 07:04 |
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Oh Barb, I can cry for you, and all of us. This process is one of a love hate relationship. I for one KNOW that the MP has given me hope for a future. The journey is hard, but the illness is harder. YOU do so much for all without a break. Your constant HELPING has to also take its toll on you. YOU are my rock on the MP and will always be. Take good care of yourself!
Lets hope your journey has an easier road from now on. As we go along, I know the mistakes I have made, and try not to repeat them Sometimes when we are IN THE BOX, it is hard to see out of the box, and know that we are having too strong IP. I usually do not realize it till I "look back" and then hope not to get caught up in it again.
I wish you all the best, OX, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Aussie Barb
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Posted: Tue Aug 28th, 2007 07:40 |
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Thank you Joyful and Lori and All
What I do on the Board is a pleasure for me. the support I receive from you all is very precious, and helps me. Thank you, 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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Sunbeam
Member in Phase 2
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Posted: Tue Aug 28th, 2007 11:44 |
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Barb,
So ssrry to hear you have been going through such a hard time. I hope this is the turning point for you and that from now on your body will respond better.
The insite you gave us into coping with these dreadful conditions has been invaluable. It's wonderful to have the support and inspiration you so freely give.
Keep taking that one moment at a time, God Bless, 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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