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Aussie Barb
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Posted: Thu Apr 2nd, 2009 06:01 |
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Thank you Diana
The pool is indoors but is lit by natural light thru roof and doors and windows.
I am covered and wear NoIRs in the car to and from the pool. It is always during the day, and has been spring and summer till this week. The outdoors temp has usually been around 90*F.. give or take. I have been on MP for 4.5+ years. Our home is low lux.
In the pool I wear a sleeveless tunic top which covers my top back and front, and shorts, and I dont use sunscreen. no NoIRs in the pool.
I wasnt ready to start till I was ready to start. I take tylenol before I go. I started with 10 minutes and increased. I moderate the level of exercise according to my pain level and chest pressure.
all best wishes, Barb ...
Friday 3rd April:
I was able to 'run' in the water today. 20 metres (yards) at a time.
It is easier now for me to step up out of the pool. L foot, L foot, L foot. but if I try to step up with R foot.. no go yet.
Saturday:
No running today.. chest pressure, so I had to keep exertion level lower.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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edj2001
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Posted: Sat Apr 4th, 2009 17:26 |
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Hi Barb,
It is great to read about your progress. We will be dancing soon. 
Gene
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Aussie Barb
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Posted: Sun Apr 5th, 2009 08:16 |
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Thank You to All ..
Sunday 5th April, 5pm. 6 weeks since last full update on previous page. full update once per page.
MP meds:
No antibiotics since 8th February
Benicar Q8H
Other meds:
-panadol: 1 tablet as needed.. around 4 per day. 2 pre pool. 1 x 5pm, 1 pre bed.
-Chelated Magnesium 500mg x 4 per day - if I miss a dose > muscle twitches in the calves, which can then become a cramp.
-Quercetin: 250mg Q6H
This combination of meds seems to be the best. any deviation, and symptoms increase to intolerable. This happened this last week or so. takes a while to go back.
Light exposure: tint, blinds and drapes over windows.
going out, NoIRs and covered in car and in direct light. 2H per day.
Indoor Pool: for mobilisation: 60 to 75 minutes work daily.
-walking- slow to fast both backwards and forwards. moderation depending on chest pressure and legs ache.
-alternate laps of walking with backstroke
-paddle gives more chest pressure. especially more till I am there half an hour.
-the last 10-15 minutes - stretches and exercises.
-can step up out of pool with L leg but not able to take weight on R leg to step up out of pool.
Summary of long term IP symptoms and changes:
I am sometimes feeling less dead tired to go to the indoor pool each day, but am ok once I get going in the pool.
-physically: stiffness, aching, discomfort.
-swelling: density of swelling is lessening. creases, wrinkles appearing.
-weight: slight increase
-tailbone sore to sit in car for more than 20 minutes. the tailbone feels inflamed.
-R hip/back: is not so noticable in the pool since I am walking less and swimming more. pain and a limp when walking on land with wheel walker. I dont walk on land much.
-R flank/kidney area: can feel it when high IP. esp when I wake up in bed.
-chest pressure: esp at pool - have to slow down to resolve. also sometimes when lying down, have to sit up to resolve.
-My skin: continues to tan even in low light exposure. more freckles, and white spots show where sunspots have healed.
skin can also be listed as: soft, white, smooth, thin, loose, thick, dark rough- like velcro, dry, tight, gritty, grainy, lesions, itching ... depending where.
-eyes: remain blurry, glazed and bloodshot, dry.
-Ears: wet and itchy when meds are due. acute inflammation seems to have resolved at present. Inside my ears feels like a different shape with the swelling gone. white flakes minimal at present. swimming has no effect.
-hearing: may not be as good. I miss what is being said. could be away with the fairies too.
my hearing and ability to unscramble accent/fast talk/language is down too, and I am dizzy while lying down, and I am expecting it is all ear /brain IP.
-Face and ears: same grainy. itchy, esp under chin.
-face, neck and under chin: looks to be 'taking up'. L side more swollen.
-forehead: a second dent is appearing. round. like the original from childhood -with the appearance of this, I am not sure now which was the original.
-esophageal: burns, relieved by meal/meds
-choky cough continues. cough drops to resolve.
-cough exacerbated by laughing, crying.
-swallowing: new difficulty, when swallowing tablets, they can become stuck in the soft palate and or throat. scary.
-nose/sinuses: never entirely clear. there is some degree of blocked all my life. some drainage at times
-Teeth: furry. L upper teeth: mostly ok, can feel them when meds due.
-GI bloat. night
-R arm above wrist: lipoma (longtime)
-wrists pain hardly noticable with general movement. can now lean on them lightly.
-L hand cannot close into a fist. little finger closes least. R hand is stiff but will close now. less pain.
-hands: swollen. skin on top of hands still has a gritty feel. a couple of small raised powdery white spots.
-2 little fingers L hand and that L area of palm of hand: numb/pins and needles is still present but may be slowly improving
-R thumbnail: has a soft spot in it and same in R lil fingernail
-arms: tanning, freckly with the more light exposure. small red spots come and go. (sunspots healing)
-lesions: couple of small. upper arms. 1 small on L face
-elbows: dry lesions ^v^
-rash/itch/weeping under R arm: waxes and wanes with meds. (Benicar and Quercetin)
-arm reach: still working on reaching behind, and am working towards being able to do freestyle swimming action.
-L foot: will feel like the bones are out of place when I walk on it sometimes.
-Feet, ankles: mild to mod puff, some decrease. less of the skin feels dry, thick. feet feel tight. and areas of skin on top of feet burn from time to time.
-L leg is slower, feels heavier to move than R leg. has more puff than R.
can step up out of pool with L leg but not able to take weight on R leg to step up out of pool.
-soles: neuropathy continues
-bunions on little toes
-toenails: need digging out.
-lower legs: may be small decrease in puff. still swollen along with the rest of me. ankles are more defined.
-calves: muscle twitches: magnesium keeping managed and to avoid cramps.
-knees are beginning to take shape
-numb area on the L upper leg. has extended upwards as larger area. electric needle jabs with IP
-skin on seating area of backs of legs: dark rough skin (like velcro): improving with time in pool.
-phone: not using phone much. can become exhausted/nauseated.
-mentally/emotionally: can be fragile, but manage any situations fairly well as long as I stay within boundaries of coping.
-outlook: manage ok. mostly cheerful.
-concentration: in small blocks. restless. still cannot read a book or magazine. have to have breaks in tv watching.
-sleep: night: 1H or 2 to 3H blocks. sleep deeply when asleep day or night.
-fall asleep when I am in the recliner.
-strength is very gradually improving. L side noticably weaker.
-shower: seated.
-standing time: no change
-walking: I walk with wheel walker in to pool and out. any further than that and sore R hip causes a limp.
-cannot sleep comfortably on R side yet.
-dizziness: when lying down.
-Car: Getting out of the car and recliner chair is still a big effort. cannot drive again yet.
-home assists: using bedstick to get in and out of bed. rails in shower and bathroom. shower seat. bathroom seat and recliner elevated. DH does everything.
-dressing: need assistance. huge effort - exhausting.
-summer heat: cannot bear it. have to have the fan or air con on.
Observations:
Generally unable to go out in car or 'on land' for pleasure yet. Have had one outing to shops with wheeled walker - walk and then sit on seat of ww for a rest, etc.. dressing, sitting, walking... all take a huge effort.
Pool update:
-Am being told I am doing well. wishing I had a before and after video.
-I was able to run in the water 2 days ago. but not yet consistently since.
-2 weeks ago I couldnt keep up with a 70+ year old lady who walks laps at the pool, because of chest pressure. Today I kept up with her lap after lap and she noticed the difference. I showed her I could now run in the water. she said they should write me up in a medical journal.
-freestyle and breaststroke too difficult yet.
-still paddle for 10metres out of every 50m as long as I have no chest pressure.
-today I stayed in the pool longer, perhaps too long and had a cramp in my foot.
-warm interaction with the others and always seeing some fun to be had.
-I can now put my head very briefly underwater. to go under the lane rope eg, and for my bend down/up back exercise. havent been able to bear face in water up till this as I couldnt 'hold my breath' at all.
-I go to the maximum amount of exertion that keeps me at tolerable for chest presssure. It takes approx 20 minutes going slower at the start to warm up before I can increase the level of exertion.
I have always relished hard work when I have the ability to do it. I am working hard in the pool and really enjoying it. I look to the rebuilding of my body with each day.
Being better in the water makes me excited to get back there each day to do more.
It is good to note the improvements, but I couldnt yet call this level of symptoms or function on land, truly tolerable or truly bearable, but it is as good as I can do at this time.
I remain cheerful, but physically, I am really wanting to feel comfortable and be able to do ordinary things as soon as I can.
Thank you. Barb ...
Add Monday 6th April:
Just back from the pool.
The other women at the pool decided after I left yesterday that "I have changed so much in 5 months going to the pool. that I look to have lost weight. (I havent) and that my face has changed and you can see my eyes. (less inflammation) and I have confidence."
headache again today after my day when I 'ran' in the pool. overdid it.
Wednesday 8th April:
Blood sugar level: fasting - 6.7
previous random testing has been in the 7s in the am. yay
Friday 10th April:
Noting that I can now manage the use of a washcloth in the shower for all but legs.
Some asking about my health history: I have probably been sick my whole Life(58) see my post, is 2nd post here Any Childhood Health Anomalies?
and This One last 2 posts at the bottom of the page.
I started getting iller in 1970s in my 20s, and have been particularly ill since 1980 when I was expecting my 4th child. just progressively worse. most who knew me socially wouldnt have known till the 1990s.
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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 Apr 5th, 2009 12:01 |
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| It is so wonderful to see your improvements. Thank God for that swimming pool and for your resolve. You are such an inspiration to all of us. Thank you so much.
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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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Deedee
Member in Phase 2
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Posted: Wed Apr 8th, 2009 04:52 |
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You have inspired me to go back to the Y and at least paddle around a little. I loved reading the observations of others on your improvements. Thanks!
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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Aussie Barb
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Posted: Wed Apr 8th, 2009 07:09 |
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Notice to All reading:
Many of you have been waiting for me to feel encouraged by my improvements. and of course that can only happen when it happens.
In the water, I am now starting to feel the difference physically, with a resultant lift in my spirits. on land is still hard, uncomfortable. I am excited to go to the pool each day with the hope that it is all adding to my strength.
Thank You to All ..
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sallie Q
Member in Phase 3
| Joined: | Mon Jan 26th, 2009 |
| Location: | Australia |
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Posted: Thu Apr 9th, 2009 03:34 |
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So good
p.s. Left is good
[DH is southpaw]
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20yrHotFlushSjogrensCFSb.cancer1990stress57-83 60%dysreg.vD 13.2 Sep08ph1 NoIRlowLux JanModPh2 May09Ph3 25DMay19ng/ml,Aug11.2
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melinda
Member in Phase 3
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Posted: Thu Apr 9th, 2009 17:02 |
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| Hi Barb, I am happy the pool is helping. That is still one place I feel just like a feather. I too am doing well. Keep it up! Hugs ,Melinda
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Lyme, parathyph86, hepB73, MP 9/04, 125D58, 6/07 D2514, Ph2 02/04, Ph3 3/06, ambien, zanax, NoIRs
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sat Apr 11th, 2009 22:51 |
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Thank You to All ..
 Easter Sunday 12th April: Happy Easter:
The pool is closed for the 4 days of Easter. and will then be open for longer slots of time per day after the holidays.
I can see changes happening to skin that seem to indicate some lessening of inflammation. eg around neck. arms, legs.
I am taking panadol more regularly to try to get more sleep. seems to help me stay asleep for a 3H block sometimes. then I get up, take meds, to computer for a while, and back to bed again. napping more in the daytime.
-ears are mostly better. less flake, and less inflammation.
-lying down dizziness.
-nose is stuffy.
-some slight 'tightness' in lungs. small wheezy cough. cough drops to manage.
-tailbone has been really sore this last week.
-R underarm less inflamed but still acute.
-gut herx and esophageal burning continue
-R hip and groin has a 'drawing away' pain. Painful R side abdo, down R leg, knee, lower back. tolerable with panadol. R hip has been slightly higher than L. not noticable to others. maybe whatever has been wrong is being righted?
Thank You.. Barb ...
Monday:
meds: benicar Q8H + Quercetin 250mg Q5 to 6H
Monday night:
A more sudden noticable difference to the swelling under my chin. R side taking up noticably more. thinking I am going to be going to the pool tomorrow with this.
Tuesday 9am:
There is a change happening in the last 3 hours. The L side under chin is now decreasing/ taking up as well. this is amazing. 2 'normal' dents appearing at collarbone area under chin.
Visitors ( a rare event): I was able to converse with a visiting Family of 4! all except for some "too much" emotional details, where I was able to say "please dont tell me any more".
-----------------------
For the first time in a very long time, today I was able to stand long enough and stable, and put my feet up on the shower chair, to wash and dry my own legs with one hand while holding a rail with the other.
Doing this should help me to gain enough strength to stand to shower.
Each day after swimming and walking in the water, one exercise I have been doing in the pool - I step my feet up to an under the water shelf just above knee level 70 x, and then after the 70x, stay with the flex on each leg, rocking to stretch the muscles etc. looks like it is helping.
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Thursday 16th:
A change: I have moved to being able to relax into what I am doing, a bit difficult to articulate the shift. It is more now, I can wait and see the end product rather than being concerned about "what" or 'how much' 'each days' swimming may be doing as far as 'renovating' my body.
This may be a gaining of confidence that in fact my body 'is' 'actually' 'doing something' now, whether I can "actually" see it or not. Continuing in indoor pool Daily: an hour of walking and swimming, + 20 to 30 minutes of water exercise.
Watched a documentary on PTSD and fear, and I realise how much healing I have had in this area.
____________________
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 |
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Posted: Tue Apr 14th, 2009 07:54 |
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Keep up the good work Barb it sounds like great things are happening. 
Take care, 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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Deedee
Member in Phase 2
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Posted: Tue Apr 14th, 2009 14:01 |
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You are working hard to get better....a role model for all of us.
Glad to see some of that work is paying off!
____________________
Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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Millie
Member in Phase 3
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
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Posted: Wed Apr 15th, 2009 19:43 |
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| Barb, Great to see you have some improvement! I know how hard it must be. keep up the good work. Millie
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sarcoidosis/pulmonary, muscles, HTN, MVP, PHTN, Hx GI obstruction, melonoma, Ph1,1/07, MPh2 3/07, Ph2 9/07. verapamil, lisinopril, probiotics, vicodin/motrin,NoIRS D25-5 3/07,7/08-VitD-11, D2-4,D3-11.
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Aussie Barb
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Posted: Sat Apr 18th, 2009 21:13 |
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Thank You to All ..
Sunday 19th April:
MP start Aug 04
MP meds:
No antibiotics since 8th February
Benicar Q8H
Other meds:
-panadol: as needed.. around 4 per day. 2 pre pool. 1 pre bed + prn
-Chelated Magnesium 500mg x 4 per day, 2 of them pre pool to prevent cramps.
-Quercetin: 250mg Q6H.
Indoor pool: an hour of laps - alternately walking and swimming, + 20 to 30 minutes of water exercise.
Observations:
cramps in pool started since I am staying at the pool an hour. so I am taking 2 Mag pre pool to prevent.
paddling 5 metres is more exertion chest wise than backstroke 20 metres.
chest under water causes pressure on chest. It can take from 20 minutes to over half an hour walking and backstroke, before I can paddle. (a metre is similar to a yard)
Now that the pool is available for longer times, there is the temptation to want to keep pushing for more and more. But I notice that I am able to think it and decide that an hour hard work is enough.
It is interesting to feel the difference in my whole self, body, mind, spirit, to feel a level of aliveness starting to rise, as my muscles are starting to gain some strength. moving towards being able to 'trust the process'.
I am so amazed how much time and effort it takes to 'move a mountain'. this has been 6 months of daily exercise to achieve, and this is just the beginning.
-napping in bed more in the daytime since I am doing more in the pool.
-skin showing signs of puff decreasing slowly
-neck/ glands swelling seems to be decreasing slowly
-noting that despite swelling decreasing, my face is still more swollen than my avatar.
-feet showing signs of puff decreasing slowly
-fingers. have had a ring guard fitted to my 4 months old new ring.
-L side generally, feels weaker, is heavier, more pufft than R.
-no going out except to pool. on land is too much effort yet.
-ears are mostly better. less flake, and less inflammation.
-lying down dizziness has gone.
-nose is stuffy
-lungs get a work out at the pool. keeping all tolerable by level of exertion.
-tailbone sore.
-skin itching if Benicar goes over 8H
-R underarm less inflamed but still...
-New: R pointer finger feels like it has a prickle. and that isnt at all possible.
-gut herx and esophageal burning continue. meds or meals help.
-can wash and dry legs every few days. L leg is harder to lift.
-R side pain. tolerable with panadol.
My life is lived between the bed, the computer, the recliner, and, happily, the pool. each day must be bringing me closer to more than that, but it is taking a long time.
Thank You..
Monday 20th:
Pool today:
I was able to go faster than usual and suffered no chest pressure.
I came out of the pool with backache today. and then it settled into R kidney area. took early meds and had a rest.
Blood sugar level when I came home was 5.3 - is lower. good.
I was wishing to have a before and after video, because I havent been able to comprehend my progress when others tell me. Today there was a new lady at the pool and she was walking along slowly and quietly and doing little bits of swimming. Seeing her I could now see that was how I was after I had been going for a while, that I was even less able than her when I started.
She spoke to me and wished she could swim as I do. Well, I said, daily for 6 months has brought me to here. a daunting prospect when starting out I would imagine.
Another man appears to swim along so slowly, doing lap after lap, so I lined myself up to see how 'fast' I go in comparison. I am even slower.. funn..
Tuesday 21st:
high level kidney pain last night settled by more freq Quercetin.
L ear is inflamed also. continuing increased freq Q.
I was able to maintain my 'faster' at the pool. is causing me to wake with legs aching in the night. take panadol.
To see me in the pool, I dont think anyone could know how it is on land. I am hoping that I am soon able on land as well. I so look forward to going to the pool each day to continue my work.
Wednesday 22nd:
Chest pressure today in the pool from pushing too hard. slowed down and took 15 minutes to be ok again.
Continuing more freq Q to modulate inflamed ear.
Thursday 23rd:
sluggish today. managed a lot of computer and isp phone interaction yesterday which I couldnt have done once. still noting changes to skin etc as swelling decreases slowly. getting some proper anti chlorine shampoo.- an hour+ per day in a pool needs some serious thought.
-suddenly, fingernails are harder(except for the soft spot in the thumbnail) and shiny.
-L palate and L ear, and swelling under L jaw may all have to do with L upper teeth?
Friday 24th:
Lady at the pool tells me I am doing so well and working hard. she can see some muscle development and swelling reduction. I look to have lost 'weight' but not so. weight has fluctuated. I am still very pufft.
I have learnt that if I slow the paddle right down, I can paddle sooner in the session and have less chest pressure.
-hands: R hand closes, not feeling as tight as it was.
L hand is closing further. still tight in the joints and the little finger closes less than the rest.
-L little finger aching. it and the next one are slowly resolving the pins and needles.
Sunday 26th:
Paddling more slowly to prevent the chest pressure means that I can start paddling after just walking a warmup 2 laps, ie a couple of minutes in the pool... and it means that I can paddle for a longer distance. I can feel the paddling working different muscles to the backstroke.
I walk the warmup laps until my legs and hips begin to ache, and then change to the swim/walk.
In alternating laps
-starting 25 metre lap: I walk backwards for 5 to 10 metres and then backstroke to the end.
-in the returning lap: I walk forwards, pushing thru the water for 15 to 20 metres and paddle the rest.
With time I am able to extend the amount of swimming with less chest pressure, but I am so far, due to the chest, unable to kick while doing the backstroke.
-ears good. less flake.
-one bout of bad pain L side this morning. rested and breathed thru it.
having naps. I have times of being down when I face what is... and I turn it around by focussing on what I have achieved, and what I am doing to get going, knowing that I am doing the very best that I can. I cant wait to get to the pool each day to do more.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Honey
Member in Phase 3
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Posted: Mon Apr 27th, 2009 01:50 |
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You have inspired me, Barb! I just checked and found out that my local pool is open until 9.45pm, and it gets dark just after 6 now. Walking in the pool sounds like something I might be able to manage.
Once I get out of this germ-killing overdrive, I'm going to follow your lead.
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CFS (twice), osteoporosis | Ph1: Dec07 | Ph2: Mar08 | Ph3: Oct08 | initial 125D: 83.3, Oct08 25D <4 | outdoors: NOIRs, covered up, zinc oxide | norethisterone/elthinyloestradiol
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judithann
Member in Phase 2/3
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Posted: Mon Apr 27th, 2009 05:31 |
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Hello Dear Barb:
I am so very glad that you found a way to excersise the body. I love the water myself. I have alway enjoyed the weightlessness of my being, when I am in the water.
Spring has arrived in Canada, and I am out and about in the fresh air again. My health has held steady, but I too need to strengthen the body more.
As Ever, JudithAnn
Last edited on Mon Apr 27th, 2009 05:32 by judithann
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MP Dx2002 Bi-op, Lungs(stg3),lymp,joints, skin, cataracts. Noirs Adv Vit-D foods Mar06.Adv light May06(Stage 2 meds)(25D=14.8nl June06) 25d=7.5nl/March 2007
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Aussie Barb
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Posted: Sat May 2nd, 2009 18:10 |
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Thank You to All ..
Sunday 3rd May:
MP start Aug 04
4 years and 9 months of MP.
MP meds:
No antibiotics since 8th February
Benicar Q8H trialling adjustments.
Other meds:
-panadol: as needed.. around 5 to 6 per day. 2 pre pool. 1 pre bed + prn
-Chelated Magnesium 500mg x 6 per day to prevent cramps.
-Quercetin: 250mg Q6H.
Indoor pool: an hour+ of laps - alternately walking and swimming, + 20 to 30 minutes of water exercise.
Pool Observations:
I am working strongly in the pool. I am still slow compared to others but it is strong for me.
using more panadol and more magnesium. is helping the nightly IBS and the pain I was previously 'living with'.
Now that I have modified the paddling to avoid chest pressure, I can start it soon in the session, almost from the beginning, and am able to continue consistently every 2nd lap.
Family visiting. discussion of similarities and I realise that I dont have any freckles on my face.
Bottom is always sore by the end of the session at the pool, and prn.
I have increased the depth of my stroke in backstroke and can notice the increase in effort. and I am awake tonight with extra R hip pain. > meds.
notable symptoms:
-napping in bed more in the daytime since I am doing more in the pool.
-no going out except to pool. on land is too much effort yet.
-skin showing microsigns of puff decreasing slowly
-abdominal inflammation, density further decreasing, softening.
-L inguinal pain niggle 1 day this week.
-to actually lift legs to wash and dry is huge effort so not happening often.
-no change in weight.
-legs shaping.
-soles of feet and toes still paresthesic.
-knees and getting out of car: ugh. stronger upper body is starting to help a little.
-hands still tight to close. L still 'not quite'.
-ears are mostly better. less flake, and less inflammation.
-R underarm is almost better
-R side IPs most.
-L side is heavier weaker.
-assistance with shower and dressing continues.
Thank You..
Sunday night: Some have expressed concern about the 'exercise' I am doing, so I shall reply here for the record. Out of the water, I am unable to be on my feet and active as any 'normal' or even moderately ill person would be, and in the pool I dont push past the level or the time that I am able to handle. 1.5 hours of normal activity per day is way short of what I would be doing on land if I could be doing it.
we have family visiting since Friday night.
Wednesday 6th May:
As part of the process toward my further progress physically mentally emotionally I am taking steps, trying to 'get a Life' outside of being on the computer diligently watching the MP boards. The MP boards have been 'my home' since I became a member here in July 04. I will still read posts as I want to from a personal point, and reply PMs and do basic Admin assistance.
Thank you all for support and care.
Today I took my dark window coverings down. tint, blinds and drapes are still in place. I wasnt capable of doing this less than 1 week ago. and I started reading a book. (but so far it isnt much good) will try another tomorrow.
I keep my eyes protected from direct light.
Thursday 7th May:
sluggish at the pool today. stayed only 45 minutes swim/walk. no exercises.
Friday 8th May:
Sluggish start at the pool but settled in ok. 1 hour total. I duckdived to the bottom a couple of times just for my own satisfaction that I could.
Today in the mail I received a surprise present. from an MP Dr. It is a white coffee mug with a pink person icon with a red heart, and Olmesartan Medoxomil written on the inside lip. YAY!! Thank you
Things I want to do when I am better.
-ride the horse again.
-dance again
-swim in the ocean again
-I want to be able to do ordinary things like run my own home, have a shower and get myself dressed, and in nice clothes, and go out in the car and have a good time, whether it is shopping, or visiting or work or entertainment.
-I like to help others in a teaching environment. ie those who want to learn.
-I'd like to travel to see Family and some MP friends, and to see some beautiful spots I have seen on TV.
-Get a passport
I will add more to this list as I think of them.
Saturday 9th May: sluggish start enables me to experience the effort I am putting in to haul myself thru the water. Chest pressure high level today, so walked slowly for 20 minutes till settled, then OK.
Sunday 10th May:
-Doing MP, I no longer have severe migraines or severe depression... but physically, still a big problem... when I stand -feels like heavy gravity pressing on all of me, esp legs and hips. neither tolerable nor bearable. I had this pre MP. In the water - holds me up, no pressure - able to stand.
I have energy now to do stuff in the water, but not on land.
-I have always had to use the antibiotics to modulate the intolerable IP. It was always a terrible dance trying to stay 1 step ahead. no antibiotics now since Feb. I need to take the panadol, Quercetin 250mg Q6H as well as the Benicar to manage.
-weight increase. body continues to reshape.
Sunday night:
GI upset and pain. 2x2 charcoal tablets and heat packs settled it.
Monday 11th May:
Relief. swimming. dull headache when I get to the pool some days.
Tuesday 12th May:
no headache. swimming went well. 1 hour + exercises. usual resulting body ache.
-I am able to assist some with my dressing. hands are not as sore, a little stronger. arms working a little better.
Wednesday 13th May:
swimming went well. 1 hour + exercises. cooler weather is here. warm water.
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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
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 343 |
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Posted: Sun May 3rd, 2009 03:34 |
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Hi Barb,
It is so wonderful to hear of your activities and improvements. keep up the good work and rest, rest, rest when you can,
Take care, 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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BARNEY
Moderator
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Posted: Fri May 8th, 2009 06:25 |
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Oh Barb,
What a wonderful post. It is so good to hear you speak of your future and what you would like to do.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Aunt Diana
Moderator
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Posted: Sat May 9th, 2009 04:38 |
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As much as we will miss your presence here, it is wonderful that you are going on to other things. I believe that is the normal course of events for most of us. As health returns there's another world out there.
But what a lifesaver this board has been while we have needed it.
God Bless, you, Aussie Barb. You are our "guiding light".Last edited on Sat May 9th, 2009 04:39 by Aunt Diana
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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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19545 |
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Offline
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Posted: Sat May 9th, 2009 04:51 |
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| Thank you Diana, I am not 'working' to the extent that I was but is is still easier to sit at the computer because I cant do much of anything else. 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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