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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Sep 17th, 2008 17:40 |
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Thank You All ..
Thursday 18th September, 2.40am.
MP meds:
Benicar 40mg Q4 to 6H
# abx: level 5. 4th dose
+ abx: 3/4 QOD. 1st dose.
Other meds:
panadol: occasionally
magnesium twice daily to prevent > cramps/spasms
Quercetin: occasionally to manage IP
stopped the insulin 21st August
Light exposure: tint, blinds and drapes over windows. no going out.
-Full body heaviness and swollen:
-looseness in the skin of swollen abdo and legs. I think I must have the opposite of scleroderma, and it is increased as IP.
-Body stiffness and discomfort: shoulders, knees, hands, back. moving is difficult. still cannot lie on R side.
-back: aches, and down R side at times of high immunopathology.
-hands and wrists painful. still unable to close into fist.
-hands: swollen. blood vessels on hand and to fingers same
-2 little fingers L hand, and that area of palm of hand: numb/pins and needles- same. cannot close.
-tops of hands and forearms: same. grainy feel..
-eyes: same glazed and bloodshot.
-ears: still some wet inside, crusty. lot of room in there now.
-Face and ears: same grainy, itchy.
-esophageal: burns, relieved by meal/meds
-Teeth: furry. L upper teeth: mostly ok
-chokey cough:
-chest pressure: occasional
-Diaphragmic/Gall area: is where IP is centred
-gut herx: same
-GI bloat. less often. drinking water helps this.
-Keep falling asleep when on recliner.
-weakness, walking: trying to improve
-shower: seated.
-affected by exertion - computer, phone etc.
-mentally/emotionally: fragile at times.
-still cannot read a book or magazine or play board games, listen to music, etc.
-Feet, ankles: mild to mod puff
-lower legs: high puff. occasional flutter in muscles. (taking magnesium to prevent cramping)
-numb area on the L upper leg. same, with electric needle jabs
-feet, toes: same re numbness.
-watching bunions on little toes, waiting for them to go.
-toenails: same, digging out.
-skin on seating area of backs of legs: dark rough skin (like velcro): stings some.
-knees pain: not wrenching to get up now
-sleep: night: 2 to 3H blocks with a 3+H block maximum. sleep deeply when asleep day or night.
-Bottom: symptoms increase occasionally
-R flank/kidney area: can feel it when high IP.
-still falling asleep any time I am in the recliner.
-Blood sugar levels remain stable. no insulin. have stopped daily testing now.
-I am trying to drink more water with more success some days than others. I have never been good at drinking water. I think it does help settle the IP some.
-new: L side diaphragm: swollen and IP this week.
-soles of feet feel burnt and tight/neuro
The Immunopathology is high level but meds schedules can now be more like that expected in the guidelines.
Physically, I have a swollen body that cannot stand for any amount of time, cannot walk any distance, hands that cannot make a fist, arms, shoulders that are painful and limited in movement. I am trying to get this body mobilised and functioning so that I will be able to perform some normal activities of daily living.
I have been able to walk (ie totter) more than once per day now, the approx 18 yards/meters to the gate. I find it takes a lot out of me and especially when walking off the concrete, so I do that in order to use more muscles.
I am able to get up from the chair more often.
hair is growing, soft, curly. will have first haircut for months soon.
Thank You All, and best wishes.. AB
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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vda51
Member in Phase 3
| Joined: | Tue Dec 28th, 2004 |
| Location: | Perth, Australia |
| Posts: | 348 |
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Posted: Thu Sep 18th, 2008 03:15 |
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GREAT TO HEAR YOU ARE HAVING SOME IMPROVEMENT BARB ,YOU MORE THAN ANY ONE DESERVE SOME REPRIEVE
TAKE CARE PETER
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Reiters Syndrome 10yrs 25D=27 1,25D=43/ Crp56.33/ WCC8.7/ lymphocytes 1.2/ BP 146/96| NoIRs/ LIGHT & D AVOID| Beni Mar05 Mino Apr05| FEB O8 25D=6 DEMI 112MG
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Fri Sep 19th, 2008 06:50 |
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Friday 19th September, 3.50pm.
The cumulative effect of the walking has caught up with me physically. I have been unable to go at all today. and here I was thinking, hoping, that was over, that all I had to do was pick myself up and walk.
and mentally, emotionally: I am finding it difficult to be patient with the process. I want to be able to do, and I want to be able to do it now. I want my body to work, to be back in shape. reality is scary.
A Journey of a thousand miles begins with the first step... and another, and another..... I have to keep my concentration here, on one step at a time.. just as I have done up till now.
Thank You All .. Barb ...
I record this in recognition of it being one step in the process of transition.
When in this, it is more difficult to see that this too shall pass.
Saturday 2pm: Thank you All. I still cant go for a walk again today but I am ok mentally emotionally. Thank you again 
Having the dream at all is further along than I was previously.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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vda51
Member in Phase 3
| Joined: | Tue Dec 28th, 2004 |
| Location: | Perth, Australia |
| Posts: | 348 |
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Posted: Sat Sep 20th, 2008 01:18 |
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You are an inspiration to all of us Barb,THANKS for everything and take care,one day at a time as you say,one moment at a time stay strong
PETER
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Reiters Syndrome 10yrs 25D=27 1,25D=43/ Crp56.33/ WCC8.7/ lymphocytes 1.2/ BP 146/96| NoIRs/ LIGHT & D AVOID| Beni Mar05 Mino Apr05| FEB O8 25D=6 DEMI 112MG
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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 901 |
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Posted: Sat Sep 20th, 2008 05:56 |
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STAY STRONG Barb your day is coming! I to notice if I dont have my water for the day that the herx is yuckier.
XOXOXO, Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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Karon
Member in Phase 2
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 31 |
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Posted: Sat Sep 20th, 2008 18:17 |
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Good Morning Barb,
I too had a very hard week. It is hard to see clear when you are in the middle of crap. One moment at a time is almost too difficult it seems, until we wake up the next day or even the next week. Second by second is sometimes the only way. I have a strong love for you Barb, I don't know why, but there it is. You are not alone my sister....we will do this one IP at a time, one second at a time. You have made amazing progress ,so try never to forget that. If you need to hear a voice of someone new....I am here for you! You have my # and I am a good listener...even if you just want to breathe and or cry.
Love to you!
xoxo
Karon
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PTSD RA CFS Chron Inflam Disease| Naproxen Tramadol| 125D73 25D20(May08)| 25D14.4(Jul08)| PH1-Apr08| Lowlux Home Work NoIRS NoSun covered up| Ph2-Aug08
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sun Sep 21st, 2008 06:19 |
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Thank You All ..
This is how the Journey is looking to me.
When I was in the forest, all I knew was the trees. No matter what I read of others I couldnt see past the trees for myself personally. I couldnt conjure up any image of being well. I had no real comprehension of how ill I was. "I am what I am" type of thing.
Just recently, I have had a glimpse away in the distance of a new horizon. The image has come to me now, of wanting to walk and do. And when I could see this I wanted it.... now....
And then..... there is the distance, the hills and valleys to be climbed to get there. THAT is when I am seeing that yes, I am ill, that my body has a lot of work to do, that I have to be patient till my body can work thru this. The knowledge can be scary..... and it can be exciting to have seen past the trees.
I can do it, I am doing it. Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Deb Grabetz
Member in Phase 2
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Posted: Sun Sep 21st, 2008 14:09 |
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| Dearest Barb....I'm sure I speak for many, who continue to root you on through all those valleys and hills that you speak of...you are forever in my prayers...forever in my heart...
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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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JanEE
Member in Phase 3
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Posted: Mon Sep 22nd, 2008 16:30 |
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Hi Barb,
I'm so glad to read of your glimpse into the future. After all you've been through, and still been there for everyone else, this is extremely good news. After recently having a couple really great days myself I can understand how much those encouraging moments mean. This is an intriguing journey we are all on. I pray that you continue to do well.
Hugs,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Tue Sep 23rd, 2008 19:17 |
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Thank You All ..
Wednesday 24th September, 4am
I have reached the position of being able to take the antibiotics as recommended as per guidelines. The level of Immunopathology is still very high. My body is continuing to swell. I havent been able to go walking again.
I am wanting to mobilise for the good of my body and it is disappointing to me that activity has made me ill, stopped the mobilising, and that my ability to function 'normally' is limited.
I have decided to try to get on top of this by being more aggressive with the Benicar - to constant Q4H. and the Quercetin - 250mg Q8H. and continue the magnesium. and, plan to do a short walk every second day to allow a day for recovery. I am hoping this will help by cutting the level of IP and allowing my body/organs to catchup.
Noting for future reference:
Home Aids: I have a bedstick to help me up from the bed. a shower chair and rails. special taps at basin and shower. seats have extra height to assist my getting up and down. a ramp.
Need help:
Bathing, dressing and undressing. going out, to Dr only, 3 months.
I can feed myself, having the meat cut up for me.
Cannot do:
Housework, shopping, sorting, preparing meals, reading, listening to music. cannot sustain the daily walking/mobilisation.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Wed Oct 1st, 2008 10:30 |
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Thank You All ..
Wednesday 1st October, 7.30pm
MP meds:
Benicar 40mg Q4H
A abx: level 5. 5th dose. I may increase next cycle sometime in the next 24+H
C abx: full dose QOD. have taken 2nd dose. will decrease to go with other increase.
Taking the antibiotics as recommended as per guidelines
Other meds:
panadol: 1 tablet as needed. daily or more as required.
magnesium twice daily to prevent > cramps/spasms
Quercetin 250mg: Q6H
To try to decrease symptoms of swelling and limited mobility, I am continuing being more aggressive with the Benicar - to constant Q4H. and the Quercetin - 250mg Q6H. and continue the magnesium. I am hoping that I truly am seeing what looks like a very small decrease in the fluid in the tissues. whether it will continue as I have to increase the meds will remain to be seen.
If I go past the 4H timing I can feel the difference and I do have to 'catch up' the meds to keep all managed. the IP is soldiering on.
I think I do feel less burdened by IP.. less aura of heavy gravity most of the time.
Some mild depressive - is quickly ok when I take the Beni or Q.
I have been told I sound so well, and in good spirits.
Light exposure: tint, blinds and drapes over windows. when I was outside for 2H this week, marginally covered, very sunny - no repercussions. but I do keep the Benicar tight Q4H and more as needed.
Social:
I noticed also that I was able to speak easily with a family acquaintance when previously I'd have avoided the situation.
Pain:
back, hands, fingers, wrists, arms, shoulders, toes.. continues but mostly managed with the meds.
Physical:
I havent yet been able to go walking again. partly I have been more physically quietened by a loss in the extended Family. all is ok.
I have more fluid/swelling on the Left side.. perhaps because I cannot lie on the Right side easily yet.
I had been thinking I should look into some physio, and then thought, naaa, MP and what I am planning on doing will help. Then, the home care assesser arrived this week and is going to send a Physio to see me.
Mobilise:
I/we have started preparations for my coming out, to mobilise, hoping to improve on my limited ability to function 'normally'.
This involves my husband shopping for some basic clothes for me, and me trying them on at home.
I have made enquiries about going for short visits to an indoor pool once I have the clothes organised. This all takes a huge effort to organise and to do.
I want to do it all as soon as possible of course, but luckily, the organising takes time, because I have a long way to go yet. I get a real shock how limited I am when I do go to go out. My thinking is ahead of my ability at this stage. but the forward thinking is progress in itself.
Thank you all for support. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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BARNEY
Member in Phase 3
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Posted: Thu Oct 2nd, 2008 03:04 |
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Barb,
I share your feelings about the limits of what you can do once you go out. I have been having a terrible time going out....I get so tired...sun still affecting me bad. Today, I did good....made sure I stayed covered with hooded denim jacket, noirs (went back to dark ones most of day), long pants, shoes/socks, hat under hood. Only messed up one thing today....forgot my 3pm pill by 1 1/2 hrs. Very tired this evening and I believe that is why.
Hope this helps you some....after almost 4 yrs I am still learning.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar20mg@3hrs, xtra as needed, Mino25mg @other day
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19444 |
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Posted: Sun Oct 5th, 2008 00:27 |
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Sunday 5th October, 9.30am
MP meds:
Benicar 40mg Q4H
A abx: level 6, 1st dose.
C abx: half dose QOD. 2nd dose.
Taking the antibiotics as recommended as per guidelines
Other meds:
panadol: 1 tablet as needed. daily or more as required.
magnesium twice daily to prevent > cramps/spasms
Quercetin 250mg: Q6H
I cannot notice any decrease in the level of fluid/ swelling. Still keeping the meds going to try.
Pain: all over - have to change position. wake approx 2H thru the night and sit up for a while to help.
Physical: Mobilise:
It has suddenly occurred to me that I cannot yet stand for much over a minute.
I hadnt thought of that when envisaging my coming out, going to the pool. maybe the physio will help. I do try to get up from my chair more frequently now that it isnt so hard on my knees.
Thank you all. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Oct 9th, 2008 02:23 |
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Thursday 9th October, 2008.
YAYYYYYYYY!!!!!!!
Today I was excited to be able to go to the indoor pool!
My first real outing that is not to the Dr
My new swimming clothes: maroon tunic with silver trim. maroon swim shorts. (comfortable).. lipstick.
Pool: 30 degrees C (86 deg F) stayed in for 10 minutes so as to not overdo it.
-wheelchair in to steps, rail to hold, and in... DH came with me, supported me. I was very emotional to be able to actually do it.
-No swimming yet, walked slowly, 4 x 25m laps in 1 metre (3 foot) deep water. by that time I could feel the pain coming in R sciatic area.
-Moved arms some but found that caused some chest pressure.
-Stayed in the water 10minutes for this first time to check how this pans out.
-I would love to go every day or more but until I check the after effects the plan is to go every second day.
- so far, the hardest part is getting ready and getting there, and getting in and out of the pool. Walking in water is MUCH easier than anything out of the water. It really is wonderful.
I took extra Benicar before, and took some more with me, and some when I came home.
Immunopathology: has been high level at some times and while still considerable, was lower than usual at other times.. this change to a lower level is scary till I become accustomed to it, in that previously, when there was a dropoff in the active IP, other intolerable symptoms would present as a sign to increase my meds: bad cramps etc. so it takes some hanging in to stay at the present level as any more meds would definitely be too much now. a lot of frog in throat coughing. meds and cough drops to resolve.
Thank you All, Barb
PS. Eyes: I have known that my eyes have been blurry, but going out yesterday showed me that I cannot see properly at all. I will need to have my eyes checked. they are/have been glazed and bloodshot for a very long time.
After effects: have required Benicar 40mg Q3H and Tylenol and they are holding me ok so far.
Friday 10th October:
Have been again. stayed in for 5 minutes only cos pressure in chest after very little walk today. I had taken new Benicar. Thank you All.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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natalie17
Member Advocate
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Posted: Thu Oct 9th, 2008 02:38 |
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Oh Barb
I can't tell you how happy I am to hear that. That would have been a beyond amazing feeling.. and walking 100 metres in water would not be easy! Wow I am so happy for you. I bet the sensation of water all around was amazing after so long away too. You are making me want to try to get to a pool!
Will be smiling for the rest of the day after hearing this! & crossing everything I have that there is little to no pay back.
Nat
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CFS/ME| Inderal Clonazepam OC Protein Powder Calcium| Sept06 1,25D=75 Jan07 25D<4.4| avoid light D, NoIRs, always indoors| Ph2-Feb08 | ABCofMP
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 216 |
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Posted: Thu Oct 9th, 2008 03:02 |
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Wow Barb!
That is fantastic news, I am so delighted for you. I will pray that this is the beginning of a host of wonderfull times at the pool for you. That is an example I would love to follow and will,
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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PaulT
Member in Phase 3
| Joined: | Fri Feb 25th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 290 |
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Posted: Thu Oct 9th, 2008 03:04 |
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Barb - I'm with you
YAAAAAAAAAAY!!!!!!
Paul
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Sarcoid diag 1/05 - Cough, fatigue, Feb 07 125D=59.6, Oct 07 25D=12, May 08 25D=7.5 avoid light/D, Noirs, covering up, Zinc Oxide on exposed skin.
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expate
Member in Phase 2
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Posted: Thu Oct 9th, 2008 13:42 |
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... and a HIP HIP HOORAY!!!!!
Thanks for sharing your amazing experience. I can only imagine how welcoming the water felt to you.
I'm hoping there's no payback and that, in spite of the supreme effort to get to the pool, the lure of its healing waters carries you forward.
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Julia
Board Staff (on leave)
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Posted: Thu Oct 9th, 2008 14:46 |
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Oh Barb... I'm in purple puddles reading this...
so happy for you...
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Sarc dx Apr.03, uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D June08:9.6. Not now avoiding light; glasses for sun only. Life is good! Julia's story
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Frans
Member in Phase 2
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Posted: Thu Oct 9th, 2008 15:47 |
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YAHOOOOOO
Love, Frans and Ellen
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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