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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Jul 26th, 2009 18:14 |
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Thank You All ..
Update: Monday 27th July. 4am
No antibiotics since Feb 8th.
No Benicar since May 24th.
Other meds: 1 panadol afternoon and bedtime for walking/exercise induced muscle soreness. + 1 prn.
-Chelated Magnesium 500mg x 3 a day for slight muscle spasming and muscle soreness.
-Quercetin: 250mg x 1 only as needed for high IP. less than 1 per week.
Next step: some mental and physical improvement: I have stopped stressing, and have started believing in myself again, as I see that I am regaining interest in things around me, and, I can again believe that as I can do something I certainly will do it... and enjoy doing it. I did believe that, and then after so long being unable I just lost hope.
Being many years since, I am totally out of practice with cooking, and still unable at this point yet to actually do it by myself, but thru this week I was able to make some small contribution to help with a the pantry cupboard makeover, and with cooking some wonderful pizza, casserole, roast, and boiled fruit cakes.
no pool for this week due to circumstances. I go outside with my walker. and I rest when I need to - most afternoons lately. More wrinkles in legs as the swelling decreases. IP continues. Improved but still need support and assistance with dressing etc.
I have very sore muscles just from sitting up and standing. they must eventually get strong and stop hurting.
best wishes to all, Barb ...
Tuesday 28th July: no Benicar for 2 months
-I should record that I have been having dizzy IP. (noting that it is/was without using Benicar)
-and also, for the research record: I tried 20mg Benicar topically once per day for 2 days only, and had an increase in photosensitivity and in IP. increased hands stiffness, skin on face coarsened, retained more fluid, etc.
-the 1 day after, (with no more Benicar for over 24H) kidney/flank ache.
Wednesday 29th July
We havent gone to the pool for a few days so I am more time on land. I am only just getting my muscles working to sit and stand and walk. I can see by these sore muscles from sitting and standing that this is an important and timely part of my rehabilitation, as the daily pool work has been so far.
Sitting or standing with arms extended doing anything takes more muscle power than without. eg sitting at the computer and leaning on the desk is one thing, but sitting doing something with hands/arms uses a lot more muscles. I am feeling every one of them. I do what I can and then have a break. By the end of the day I can hardly move, so I take panadol.
The muscles and joints are affected by IP as well.
Bottom pressure/IP symptom also increases with more standing walking.
Today, I have been able to look at 'stuff that needs doing' without going into overwhelm. that is a big one. >> see >>
Friday 31st July
My brain does seem to be able to 'place and maintain order' again to some degree.
I am finding me again bit by bit. My body has a lot of catching up to do.
For those interested in the amygdala retraining, I am using the technique infrequently now as I have progressed to a better state of being. what a relief. At first, it seemed to be an interminable process..
-Rested yesterday. Still muscle sore etc today.
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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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jasmine
Member in Phase 3
| Joined: | Fri May 4th, 2007 |
| Location: | Michigan USA |
| Posts: | 229 |
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Posted: Sun Jul 26th, 2009 21:45 |
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Great news, Barb, to hear you are doing so well. You are truly an amazing person and an inspiration to us all!
HUGE thanks for all the times you help us even as you heal yourself!
All best, Jasmine
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PTLDS 53 years,autoimmune thyroid disease,migraine,CFS,FM,neuro pain,arthritis,osteopenia,anemia,scoliosis,IBS,MCS,Lupus?; 125D 45 6/07; 25D 12 8/09; PH1 6/07, ModPH2 7/07, PH2 1/08, PH3 12/08; Synthroid; estradiol patch; Noirs; low lux home.
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DWD
Member in Phase 3
| Joined: | Thu Feb 7th, 2008 |
| Location: | Australia |
| Posts: | 143 |
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Posted: Thu Jul 30th, 2009 01:04 |
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dear barb,
i hadn't logged in for, well, too long... and i only read about your recent adventures yesterday.
you are an inspiration. thank you for all your help around these parts. hope you're feeling much better soon.  xx.
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Rickettsial infection 125D53 (MP Mar07-Feb08 w/o NoIRs or light avoid) Ph1 Feb08 Ph2 Mar08, NoIRs, homebound low lux home with limited outings covered, endep 25D22 4/02/07; Aug08 25D 6.4
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sat Aug 1st, 2009 19:48 |
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Thank You All ..
Update: Sunday 2nd August. 5am
No antibiotics since Feb 8th.
No regular Benicar since May 24th.
Other meds: 2 panadol or 1 aspirin around Q4H from afternoon thru the night for walking/exercise induced muscle soreness.
-Chelated Magnesium 500mg x 3 a day for slight muscle spasming and muscle soreness.
-Quercetin: 250mg x 1 only as needed for high IP. none this week
no light avoidance. some eye sensitivity at times -wear NoIRs in bright sunlight.
-Pool again last 2 days after a week away. I do love the pool. I can do things in the water that I cannot do at all on land, but there are still limits.
-chest pressure in the pool: This happened after I had already been walking etc before the pool. I tend to not want to know about this and to be upset that it slows me down, which doesnt help. I am teaching myself to listen and slow or even stop, calmly. knowing/respecting that my body is working to capacity, and that capacity is increasing all the time.
-a lot of mobility induced muscle aching.
-face flushes after any exertion. getting dressed etc.
-body hot. but feel cold at night right up till going to bed.
-Hands: stiffness is decreasing. L is still more.
-Dizziness.
-Ears. L ear inflamed. I have stopped the dry crust by the use of some moisturiser.
-Lower back aching after walking standing. disrupting sleep.
-L upper leg neuropathic area burning high level> restless.
managing. had to step up use of process again.
-L leg continues weaker than R leg. noticable to lift out of car.
-R hip, pain, limping when walking 'too far'.
-both little toes itch at times. relief by applying moisturiser.
-urine is now concentrating since off Benicar. a good sign imo.
-abdominal inflammation continues to decrease.
-big afternoon naps.
We have the small step to replace the ramp. what a delight for me to be able to step comfortably up and down now. have now ordered one for the back door as well.
Lots of pretty flowers in the garden.
best wishes to all, Barb ...
what I have learnt (or am learning) about mobilising:
-go slowly, listen to my body and respect what it is telling me, otherwise I will pay.
-adequate water and food, and rest when I need to.
-It has been a very slow process for me. 10 months in the pool for an hour daily. plus whatever else I can do.
-it pays to keep a record of personal successes to reflect on for any days of despair.
-have a good support partner to remind you of your successes and to take care of yourself.
Tuesday 4th August
It is interesting to watch this unfold. This week
- I have been able to more clearly see the result of doing too much trying to keep up on a shopping trip. Previously, it was just more of the same high level symptoms.
-and, I am not as impatient to be pushing to recover. I am more at peace. more able to be in the moment. which in turn, should be more helpful.
-and I am able to see that the impatience was partially at least, from fear, fear that I wasnt recovering. I am feeling less fear.
muscle sore from standing and pool.
Thursday 6th August
-Went to the shop instead of the pool. Muscle sore from the walking standing on land.
-swelling continues to slowly decrease.
Friday 7th August
-fatigue and some depressive last 2 days. sore bottom. went to pool. came home brighter. *will post more on this later.
Saturday 8th August:
As per Bookdad's suggestion below, I am trying to sleep/ rest more on R side. - hence I am out of bed writing this at 2am. : )
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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: Sun Aug 2nd, 2009 06:17 |
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Thank you, Aussie Barb, for the continued hope and inspiration you offer to all of us.
Lately I have been a bit discouraged, but after reading your post I am once again optimistic and realize that this recovery is a long process. Thank you so much for being the "standard bearer" for all of us.
Your post today made a huge difference to me in my attitude. I guess we are all allowed to get a bit discouraged at times, but you are always there, with this guiding light, leading us forward. In another time, you would have been called a "saint".
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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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Pipistrelle
Member in Phase 2
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Posted: Sun Aug 2nd, 2009 11:18 |
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For these times, I think the idea of the hero's journey is still relevant, and Barb you definitely are the standard bearer for all our journeys!
With grateful thanks
Morag xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 362 |
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Posted: Mon Aug 3rd, 2009 07:27 |
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It is always wonderful to hear of your progress Barb. I'm glad to see you are back in the pool again now, also able to enjoy the garden flowers and other things in the garden,
Keep up the good work, 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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Lottis
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Posted: Mon Aug 3rd, 2009 08:20 |
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Yes Barb, Your determination is uplifting to us all. I see that you just past your 5 years anniversary as a member on the board. Congratulations! I quote you;
The Marshall Protocol Blessing
To us Each & All:
May your immune response be big enough
for you to be making good progress
and not too big
that you may still be able to rise to the challenge!!!
Barb  Last edited on Mon Aug 3rd, 2009 08:22 by Lottis
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HTN,LVH,CHF,arrhythmia,hypercholesterol,IBS? fibromyalgia?salivarystones,gallstones,ect...|15feb-07 init. 1,25D 37,5,|25-D 7,8(latest 15/2-07)| Ph1 29/7-08| Palliativ Meds. at the present; |Zoloft|NoIR's|covered up|disabled|
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bookdad
Member in Phase 3
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| Location: | Riverdale, Utah USA |
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Posted: Thu Aug 6th, 2009 21:46 |
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Barb, Wow! thats all I can say! you have come through alot I didn't even know about and you are off the abx and progressing so well its like " rise ,take up your bed and walk" kind of stuff 
Concerning your left side- do you normally sleep on that side? It seems alot of involvement on one side and I was thinking that it might be from a prolonged position.
Keep up the great progress!
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs Ph5 Aug 09
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Aug 6th, 2009 21:54 |
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Thank you Bookdad
Hmm, L side.. I sleep on the L side because I cannot lie on my R side yet....
and I dont do much sleeping. lol. and I get as much 'exercise' as I can bear, daily at the pool, or on land. All I can say is that hopefully, it will all 'get there' one day.
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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bookdad
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Posted: Fri Aug 7th, 2009 02:03 |
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| may I suggest trying a different matress or sleeping place to try and eliminate the presure? it may be causing blood to pool in thos places and stop the circulation there for long periods essentially killing tissue. I have to consiously make my self turn several times in the night for the same reasons.
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs Ph5 Aug 09
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Fri Aug 7th, 2009 02:50 |
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Thank you Bookdad
Even though I can only lie comfortably on either the L side or my back, I also sit up, get up thru the night, and occasionally try to lie on R side. The other thing is that more of the lymph buildup has 'fallen/gravitated' to the L side probably for those reasons also, and the uneven heaviness may be the cause of my not being able to lie comfortably on the R.  I will try more to do so, Thanks. 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
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sun Aug 9th, 2009 02:49 |
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Thank You All ..
Update: Sunday 9th August.
No regular Benicar since May 24th 09.
Stopped antibiotics Feb 8th 09.
Took mino 50mg August 7th. 1 dose so far.
Other meds: 2 panadol or 1 aspirin prn afternoon thru the night for walking/exercise induced muscle soreness.
-Chelated Magnesium 500mg x 3 a day for slight muscle spasming and muscle soreness.
-Quercetin: 250mg x 1 only as needed for high IP. 1 for depression this week
no light avoidance. some increase in eye sensitivity at times -wear NoIRs in bright sunlight.
-Indoor Pool: 45 minutes daily walking and swimming, + 15 minutes exercise. going slower when I need to for chest pressure.
-Shops as able for my on land exercise. sometimes walk further than I wanted. > pain.
-As per Bookdad's suggestion, I am trying to sleep/ rest more on R side to even up the lymph buildup and to give my L side a chance.
-swelling slowly decreasing overall. more wrinkles. -weight very slowly decreasing as this goes. - on unweller days fluid retains and weight increases.
-able to lightly 'self massage' some areas.
-IP in diaphragm and RUQ. increases under stress as always.
-standing in shower slowly improving. gave away shower chair. I am cautious, take care.
-I felt a change in my usual IP symptoms.
-They slowed and started to go downhill and couldnt be brought back up with the usuals. 'downhill' symptoms are downhill swing in body function shown in eg corners of mouth, dry hair, excessive hunger, sore bottom, pressure in bottom, soreness dry crust in L ear, little toes extremely dry cracking itching, depression. and, later recognition of.. face flushing.
-I knew from my recent experiment with 20mg Benicar that it caused an increase in symptoms for me at this time.
-and it was now 6 months since stopping the antibiotics. (when they would no longer make any difference to my symptoms)
I decided to try Mino 50mg. 48H ago.
So far I am happy with the result. First of all some increased aching, including teeth, but Depression, fatigue, and general blah have lifted, my hair is softer again, and skin feels better (including those little toes). noticed skin on arms went red first day. I will watch symptoms to assess mino schedule - whether it be Q48H or ?
best wishes to all, Barb ...
4pm
Having gone past the 48H now, the increased aching has returned. While it remains tolerable I will go with it to explore, and not take the next mino yet. am still bright enough otherwise. it has been nice to feel brighter than I had been feeling pre mino.
Monday 10th Aug 10am
aching soon left. just watching waiting. woke bright enough, some sludgey.
11am took mino 50mg
Tuesday 11th
enjoying the effects of the mino 50mg. seems Q48H are best to keep symptoms optimal.
Wednesday 12th Aug
Mino 50mg dose today. is helpful. - I am starting to feel like I am getting somewhere, in that I have the feeling of some Life in me.
-I can walk around inside with more ease. makes a difference. more interest. thankful for this.
-Continuing at the pool : ) napping each afternoon.
Thursday 13th August:
Previously, when I have made improvements, others could see it, but because I couldnt "feel" it myself, it was very difficult, almost impossible for me to appreciate progress.
Noting that I am on mino 50mg QOD to manage symptoms. Even though I cannot at this point say that I feel "well", how I do 'feel' in my mind and body some of the time now, compared to before, is like night and day. Along with showing some interest in Life in general, I feel a shift to being able to appreciate that.
Home from swimming: Looking at the bigger picture, what I am doing is working, so that is something.
This morning I saw the records of my blood sugar levels 2 years ago just before I went to hospital from 27Oct07 to 10Dec07. BSL went as high as 32.7+ (too high to read) (normal is 5 to 8). On Insulin 22Oct07 to 21Aug08, weaned down by 1 unit weekly. random BSLs stay within normal now.
My skin looks like deflated balloon as the swelling slowly decreases.
I should record here that most of the time I continue unsteady with a knife and fork. I wonder if it is actually possible to eat peas with a fork : ) not ready to go out to dinner with company, unless I can use a spoon : )
Friday 14th Aug
Even the mino appears to increase the fluid retention. noticable abdomen esp at about 36H.
____________________
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 |
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Posted: Tue Aug 11th, 2009 07:44 |
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I hope the mino keeps helping Barb. It is so important to feel better, the mino helps me too.
Keep up the good work,
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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Julia
Member in Phase 3
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Posted: Fri Aug 14th, 2009 14:58 |
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>I wonder if it is actually possible to eat peas with a fork
I eat my peas with honey;
I've done it all my life.
It makes the peas taste funny,
But it keeps them on the knife. ~Anon.
Mashed potato was invented
when our Irish forebears found
forks would need some squashy padding
to stop the peas from going to ground. ~Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Aug 14th, 2009 19:45 |
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Thank you Julia
I had been tempted to add that little ditty to my own post. (it is a family favorite). good one about the mashed potato. That is the missing component as far as the peas go. Thanks
Your own PR and pic! partly reposted below
and was good for me to see the time line. something for me to look forward to. Barb ..
From Julia's Progress Report: >>>
 ...good old MP!!...
Summer holidays - going for a walk
2006 wheelchair
2007 4 wheel rollator with seat
2008 3 wheel walker, no seat
2009 walking stick /3 wheel walker
Last 2 weeks 2 sticks
This week...
Julia running along the beach.
Julia adds September 23rd:
Today I walked three miles, without sticks, around a beautiful lake about an hour’s drive from here, one of my favourite autumn haunts. I did sometimes make use of the seats provided at intervals.
Last week in Scotland I walked and walked, though never quite as far at a stretch as I did today.
Life is good! I am thankful for being lead me to the right combination of drugs and diet that has given me back my mobility JJJ May the work we’re doing pass the good news on to many more.
Julia
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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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Julia
Member in Phase 3
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Posted: Fri Aug 14th, 2009 20:04 |
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Barb, I think you are already making faster progress than I was before these last few months, so I don't think you'll be taking as much time as I did to get from the wheelie walker to running along the beach
I thought of you paddling in the sea as I ran - daughter (who took the pic) paddled, but I was too busy flying
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Aussie Barb
Member in Phase 3
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Posted: Sat Aug 15th, 2009 22:56 |
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Thank You All ..
Update: Sunday 16th August.
No regular Benicar since May 24th 09.
No Antibiotics from 8Feb09 to 7Aug09 then started Mino 50mg.
Present Meds: Mino 50mg QOD - dose #4 today.
Other meds: 2 panadol or 1 aspirin prn afternoon thru the night for standing/walking/exercise induced muscle soreness.
-Chelated Magnesium 500mg x 3 a day for slight muscle spasming and muscle soreness.
-Quercetin: 250mg x 1 only as needed for high IP. none this week
no light avoidance. some increase in eye sensitivity at times -wear NoIRs in bright sunlight.
-Indoor Pool: Daily: 45 minutes walking and swimming + 15 minutes exercise. going slower when I need to for chest pressure. Caution to starters: remembering that I was much slower and less capable when I started.
-Shops as able for my on land exercise. taking more care to not walk further than is tolerable.
-still making an effort to sleep/ rest more on R side to even up the lymph buildup and to give my L side a chance. Since doing this I am experiencing effects in R hip making me think that the R hip pain may have also been from lying predominantly on L side.
-the mino effect is very subtle. I havent experienced this before. It has relieved the 'downhill' symptoms, and the extra IP is subtle. My previous use of antibiotics was in not very successfully countering intolerable symptoms while on Benicar.
-swelling slowly decreasing overall. more wrinkles. -weight very slowly decreasing as this goes. - on unweller days fluid retains and weight increases.
-IP in diaphragm and RUQ increases under stress as always.
-feet: soles/neuropathy. toenails improved.
-increased ability to stand. standing is 'exercise' for me. the seat on my wheeled walker is my friend.
-gut is functioning better the last 2 days.
-Fatigue/Energy wise: still struggling but improved from before.
-napping each afternoon.
-continue wakeful thru the night with discomfort/pain
-I overstretched my shoulder muscles one day> very painful to move. 1 careful session of backstroke in the pool and it was ok again.
-some improvement mentally re phone and writing. able to do what I couldnt previously do, but am very drained/down afterwards.
-I am becoming increasingly able to see and appreciate from where I have come to where I am.
-a personal note: recently any ring that I have had enlarged to fit, continues to break at the joins (multiple times). Apart from my having very pufft fingers, this is mysterious as I dont do any 'work', am still only a 2 finger typist. ?the pool. I guess I want every day to be a special occasion now. Rather than have no ring, am having a new ring made to size.
The garden helps to distract me.
best wishes to all, Barb ...
Went to the beach this afternoon. The first thing was the smell of the water.... and the sound of the waves breaking. We walked down the ramp and I decided instead of going to the water, to stay, seated on my wheeled walker, with my feet in the warm dry soft sand and close my eyes and soak it all in. it was just so wonderful.
Reality... a reflection:
Inside me I think that I am well. and that is why I have been disappointed to find out anew and anew what reality is..... why I dont want to know eg that I have chest pressure, I just want to keep right on with what I was doing, thank you! Why I 'think' that I can just walk.... big smile... and what is this? I cannot? it is difficult? it takes so much effort? well! hmph! surely this will be fine in no time at all! .....................
.............. It is going to take time? I want to walk and run and dance right now.. I have so many things I want to do. ..........................
.................. I seem to have been almost in and out of the consciousness of the fantasy and the reality ....................
and now ...... I am becoming increasingly able to see and appreciate from where I have come to where I am. .................... : )
Monday 17th August:
My daughter was saying how I have improved from -struggling to walk from the bedroom to the kitchen, to now - even wanting to go outside the house and to go to the shops is an improvement.
No pool today, and lots of napping, and my muscles are still aching at the end of the day.
Thursday 20th August
Have been back to the pool. I enjoy the freedom to move in the water - activity is always governed by the chest pressure.
Finding I am balancing daily exertion and rest better than I was. not so much overdoing.
Some mild headachey.
Overall, I feel happy.
I have my recipe book back from my daughters after 8 years of not seeing it, and many more years of not needing it. Sadly it is old and fragile now of course. I am not sure how much I 'need' it or will ever need it, but I am typing the recipes I want to keep. I am able to do this with some ease in short spurts. (converting to metric measure as I go and adding tips). each recipe evokes memories.
Friday 21st August
Have had a visitor for a few days. I can notice that I am doing better than previously, but tired. Took pics, can see improvement, can see swelling has decreased, can see still highly pufft.
2 weeks on mino 50mg. return of the 'downhill' symptoms: toes, hair, L ear, hunger, corners of mouth, bottom - increased mino to 75mg tonight.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Toni D
Moderator
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Posted: Sun Aug 16th, 2009 18:05 |
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The wonder and beauty in life itself is truly a blessing. You've always been a blessing to me and others. I know you're not where you want to be yet, but my dear friend, you're surely not where you were.
The vision [total manifestation] is yet for an appointed time, but at the end it shall speak and not lie. Though it tarries you are waiting on it and continuing to recover because the total manifestation will surely come.
Feel good and be blessed, Barb.
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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
Member in Phase 3
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| Location: | Australia |
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Posted: Fri Aug 21st, 2009 21:06 |
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Thank You All ..
Update: Saturday 22nd August.
No regular Benicar since May 24th 09.
No Antibiotics from 8Feb09 to 7Aug09> restarted Mino.
Present Meds: 21st Aug increased to Mino 75mg QOD
Other meds: 2 panadol or 1 aspirin prn afternoon thru the night for muscle soreness.
-Chelated Magnesium 500mg x 3 a day for slight muscle spasming and muscle soreness.
- tried milk thistle x 1 per day. having a break. may have given me a headache.
no light avoidance. some increase in eye sensitivity at times.
-Indoor Pool: 10 months of Daily 45 minutes walking and swimming + 15 minutes exercise. I enjoy the freedom to move in the water - going slower when I need to for chest pressure. Caution to starters: remembering that I was much slower and less capable when I started.
-Shops and beach as able for my on land exercise. taking more care to not walk further than is tolerable.
-still making an effort to sleep/ rest more on R side to even up the lymph buildup and to give my L side a chance. Since doing this I am experiencing effects in R hip making me think that the R hip pain may have also been from lying predominantly on L side. R hip does seem to be improving.
-After 2 weeks on mino 50mg. > reappearance of 'downhill' symptoms: toes, dry hair, corners of mouth, bottom - increased mino to 75mg last night. some IP in back/flank.
-the Mino relieves the 'downhill' symptoms, and the extra IP is managable.
-swelling slowly decreasing overall. more wrinkles. -weight very slowly decreasing as this goes. - on IP and unweller days fluid retains and weight increases.
Ever since I have been sick I had continued to swell, and the last 5 years gained 37kg/ 80 pound.
When I was able to go to the pool, I thought that activity may help my body function, but even the daily 1 hour at the pool since Oct 08 made no difference.
I stopped antibiotics Feb09 and Benicar end of May 09, almost 3 months ago. This last 3 months, the swelling is gradually decreasing... skin looking like slowly deflating balloon with new wrinkles appearing each day and weight has begun to decrease >> by 9kg/ 20 pound.
I came off the Benicar starting Oct08 by dividing the dose in half and taking 20mg Q8H and then after some time, dividing again etc etc..
I am now taking Mino 75mg QOD. Had to start Mino 2 weeks ago to palliate symptoms.
I just play it by ear doing what I need to do to manage. If there comes a time that I can take Benicar, even just a little, I will take it then but I was too miserable altogether and needed a break. All function, all my joints are affected by the swelling, and I also experience chest pressure from exertion.
Looking back, there is now noticable improvement while walking - it is still a huge effort to 'go for a' walk, but the direct heaviness and drag feeling in my hips and thighs has gone.
I can notice that I am doing better than previously, but tired. Took pics, is a good way to compare. can see improvement, can see swelling has decreased, can see still highly pufft.
-IP in diaphragm and RUQ increases under stress as always. taking 1 milk thistle per day to use up what I have here.
-feet: soles/neuropathy. toenails improved.
-increased ability to stand. standing is 'exercise' for me. I use the seat on my wheeled walker to rest.
-gut function: managing
-Fatigue/Energy wise: still struggling but improved from before.
-napping each afternoon.
-continue wakeful thru the night with discomfort/pain. from 3.30am on I sit up for an hour or so (at the computer) to relieve the 'congestion' in my back muscles.
-some improvement mentally -able to do what I couldnt previously do, but > fatigue afterwards.
Have had a visitor so have done the shops and beach. It is lovely to be able to wear real clothes and go places, - made possible with the wheeled walker, but still very hard work yet. As slow as it seems it is nice for me to be able to see that I am improving.
best wishes to all, Barb ...
Saturday 22nd August
Very tired following this weeks (lovely)visitor. went to pool. napped 2H in afternoon, still very tired.
Sunday 23rd August
Very tired in the morning. went swimming. had a 2H nap and was ok again but quiet. should be ok by tomorrow.
-Noticed flushed face tonight past mino 48H due time, and realised that I hadnt seen this symptom recently - since being back on mino.
Monday 24th August
Feeling some better today. not quite recovered from the extra fatigue yet. still having to pace myself on land, but in the water I could go faster today. : ) having a nap.
-I have less pain to stand and washup. can stand a little longer and better.
Tuesday 25th August
Went for blood tests today. I can see that I have improved since last time (3 months ago)
We are invited out to dinner tonight. wow this is something different.
and it is Indian. I couldnt wipe the smile from my face. I have realised that I will have to take my walker to sit on. At home I sit at the table on an office chair to have the extra height and mobility. hey ho : )
9pm:
Dinner went very well. I was really tired after an hour. but good to manage it all. : )
Wednesday 26th August
I finished typing the recipes from the book and added a few more.
muscle pain continues. taking panadol. Limited movement and muscle pain are the biggest things I have to overcome at present, and I am working on it..... and I think that if it is sore, it Must be Getting Better mustnt it : ) : ) I feel that it is.
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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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