 |
| Author | Post |
|---|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Mon Oct 12th, 2009 19:56 |
|
History: Start MP August 04
No Antibiotics from 8Feb09 to 7Aug09.
Mino 7Aug09 to 8Sept09 stopped
Benicar weaning started Oct08: details here. Aussie Barb
No regular Benicar from 24May09 to 10Sept09
8Sept09 > Z 30mg dose #1 to relieve intolerable inflammation.
Benicar restarted 10Sept09.
Taking the meds is the only way I can keep the symptoms managable. It is a balance to keep all tolerable as possible. I take my meds as I need to to manage as I work towards recovery. I "follow the herx". ie I do whatever I need to do re adjusting my meds - to keep all tolerable to keep myself safe and to have a reasonable life..
------------------------------------------
Thank You All ..
Tuesday 13th October Update
Present meds:
Antibiotics: Cycle 2 of 15mg Zith only, once every 10 days. is day 8 today.
plan to take 15mg again on day 9 or 10 when symptoms start to increase, to begin third cycle.
Benicar: Benicar 5mg orally Q4 to 6H as required.
+ 5mg locally x 1 per day as required for acute area of inflammation - is almost completely resolved.
Other meds: 2 panadol prn for pain, muscle soreness. 4 to 6 per day.
1 x 250mg Quercetin for sticky morning cough.
Skin: no light avoidance.
Eyes: some increase in eye sensitivity at times. blurry. sunglasses on in the car & to do backstroke.
-Indoor Pool: 12 months of 7 days a week at the pool: 50 to 60 minutes walking and backstroke + 20 minutes exercise. what & how governed by chest pressure. swimming continues to improve. I can feel awful to go and yet always be ok when I get going in the water.
-on land: as per post above.
After the pool, I rest a lot. When I wake thru the night with pain, I do 15+ minutes of range of motion movements while lying & sitting - spine, neck, arms, shoulders, sit up for a while & then go back to bed. they must stop hurting & become more flexible, strong, if I keep it up.
Z cycle is following textbook now that I am not using mino with it. Benicar 5mg is just right for me at this stage. more leads to an increase in ear swelling/pain & other intolerable IP.
While I can be stiff to get out of the car my knees are not painful like they used to be. I think the squats in the pool have helped this as well. L leg still most difficult to lift in & out of the car.
Still unable to stay in the car for over 20 minutes (too stiff). Still cannot leave home to stay away. still not 'house active' yet.
Even though I do have to rest a lot, & I am stiff & sore (part IP, part exercise), & have to use a wheeled walker, I have a strong incentive to get myself going. I am now able to do the swimming & exercise, which I wasnt able to do 1 year ago, or preMP. & if I did attempt to do any then, I suffered terribly afterwards.
spot lesions continue.
neuropathy soles of feet continue.
feet feel tight. skin dry.
RUQ
body. pain stiff.
ears are blocking at swimming now. not before.
eyebrows are showing again. dark.
best wishes to all, Barb ...
Tuesday update: 3pm (is beginning of day 9 for me). changes in symptoms. pain L arm. eyes gummy, ears blocked. sinus drain. etc. Benicar is up to date, so, time to take the Z to keep all tolerable & moving along.
cycle 3, Z 15-20mg piece. Day 1.
Wednesday 14th
swim 1.5H. stiff & sore. tired. resting. hot.
personal notes: I dont do much walking on land. I do almost 1.5H of activity in the pool daily. The symptom of sore bottom (felt like bottom falling out) is no longer presenting after this activity. The muscles & GI inflammation must have improved. now it feels to be more like fragile skin only, more when Benicar is due. & the other is that there is less paralytic GI> bloating less. working better.
Thursday 15th
Day 2. 30mins of bodywork 2am. swimming is going well. I am doing more freestyle ie swimming forward. I am so thankful for the opportunity to use a pool. It has made my rehabilitation possible.
High level IP. RUQ. stiff muscles.
mouth ache, teeth. tongue sore. <all mild.
skin: dry, prickly itch.
Friday 16th
Day 3. We went to  w wheeled walker after swim. rest. a/a.
feet feel dry, burn, tight. must be all neuropathy. High level IP.
Saturday 17th
Day 4. I was out in the world with a relative today. ohh dear, the reality of what normal people (20 years older than me) can do is a bit of a shock. but ahh well, one day at a time, keep on working at it.
5pm. I am unwell from going out today. asking myself 'what was I thinking?' I didnt/couldnt do anything. I was just 'there'. Sitting in a vehicle 3H in the heat of the day. ugh. acute inflammation has flared. Taking Benicar 5mg Q2H + applying locally.
Sunday 18th
Day 5. exhausted. Benicar 5mg Q4H. wired/tired > eventual rest. High level IP. panadol.
Monday 19th
Day 6. swimming good - to start, it can take half an hour of going really slowly for chest pressure to settle. High level IP. acute inflammation flaring. local 5mg Benicar applied prn.
Décolletage: skin is remodelling- includes couple spot lesions similar to others.
Benicar Q4 to 5H prn. body pain continues. Benicar + panadol. teeth feel pressure when biting anything harder. Hair is dry. This is hard work, but it has to be done. Taking the meds is the only way I can keep the symptoms managable. It is a balance to keep all tolerable as possible.
Tuesday 20th
Day 7. swimming. slow start. less chest pressure. IP less this afternoon. still need to rest. using local Benicar still today. soles, dry, burn - transient.
Wednesday 21st
Day 8. swimming. less chest pressure. high level IP day. walked short distance on land this afternoon. rest. helped w a couple simple chores in kitchen.
-wet ear may be less wet! less dry crust. easily clogging with water though.
we have crushed & divided the next z doses more carefully now that a small amount is making a difference.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Wed Oct 21st, 2009 20:09 |
|
Thank You All ..
Thursday 22nd October Update
Antibiotics: Cycle 4 of 15mg Zith only, once every 10 days. 4.30am. is day 1 today.
Benicar: Benicar 5mg orally Q3 to 6H as required.
+ 5mg locally x 1 per day or not - as required for acute area of inflammation - flared with the mid Z cycle IP.
To keep my symptoms tolerable, I have to take the MP meds. They provoke IP as well. I have to work the balance.
Other meds: 1 panadol prn for pain, muscle soreness. up to 3 per day.
1 x 250mg Quercetin for sticky morning cough occasionally mid Z cycle.
Skin: no light avoidance. skin is very brown. browning very much from the only light exposure being 6am indoor pool. (even 4 years of complete light avoidance didnt take away the tan line)
Eyes: some increase in eye sensitivity at times. blurry. sunglasses on in the car & to do backstroke.
-Indoor Pool: 12+ months of 7 days a week at the pool: 50 to 60 minutes walking and backstroke + 20 minutes exercise. what & how governed by chest pressure. swimming continues to improve. I can feel awful to go and yet always be ok when I get going in the water.
-on land: walk with wheeled walker at grocery shop x 1 + went outside at dusk to practice yesterday.
Swimming. resting. doing what I can when I can means I can occasionally do a small washup or use the microwave.
not doing ROM thru the night this last week.
Day 8, last night, I actually slept 6H, but woke with mild headache which persisted even after Benicar, so took Z (day 9)
-ears are changing. may be less wet ear, less draining + more blocking at swimming.
-mouth ache, teeth. tongue sore. <wax & wane -all mild.
-sinus drain, sticky cough esp mid z cycle.
-hair is dry
-skin: dry, prickly itch
-spot lesions continue.
-neuropathy soles of feet continue.
feet feel tight. skin dry. transient burn.
-chest pressure w exertion in pool. lessens after 20 minutes.
-RUQ is mostly where I feel IP rising when I need to take Benicar.
-body. pain, stiff.
-eyes are working it, blurry. still look bloodshot.
best wishes to all, Barb ...
Thursday 22nd
Day 1. swimming. home. rest. shops. rest. walk at dusk with wheeled walker. all a big effort. Benicar Q4 to 6H. Plenty IP. I feel more stable on this day 1 than I had in the other 3 cycles.
Friday 23rd
Day 2. a few 'start of z cycle' symptoms early in the morning. swimming. tired, rest. legs showing more wrinkles.
Development. Benicar not palliating the increasing inflammatory symptoms. I specifically waited & checked to make sure my response hasnt changed. For me personally this means the 15mg dose wasnt enough & I have to increase the antibiotic/Z dose to maintain palliation. so it is a new cycle at 3pm. 30mg Z, cycle 1.
5pm. walked with walker outside on the street. is easier than on the grass.
8pm update. new dose is helping. normal IP resuming. Benicar is again effective as needed.
Saturday 24th
Day 1. early- active on computer. tired -short walk. symptoms/IP otherwise settled to usual level again. Benicar 5mg Q6H is ok.
Swimming. short walk outside. back is notably itchy. L upper teeth - mild. maybe less body ache/pain, but still too much. stable IP today. still more IP than I would choose.
To keep my symptoms tolerable, I have to take the MP meds. They provoke IP as well, so I have to work the balance.
Sunday 25th
Day 2. short walk. R hip muscles need the on land work. the pain is changing, moving, is less, so it is improving but it is taking a lot of work, in the water & on land.
swim. visit at a swimming friend's 1.5H - managed sitting up better than last time some months ago. rest. short walk. stand & shift weight foot to foot to exercise hip muscles.
sticky cough, sinus draining. Benicar 5mg Q6H. managing IP.
Monday 26th
Day 3. 3am 30 minutes ROM & stretches. I am so pleased that, after a sleep each night, I am again capable of going back to work on my body.
It is also very good not to suffer bloating every night any more. However the level of IP I still have is plenty to bear yet.
Swim. rest. Today the IP is increased. Is more abdominal than RUQ. RUQ was back when the Benicar dose was due.
More body ache today maybe due to sitting up visiting yesterday.
short walk this afternoon. R hip: I do as much as I can with it. have to keep working on it.
Tuesday 27th
Day 4. swim - tired today. podiatrist - she is calling me a miracle. shop & R hip is sore to walk but ok. will keep working at it. rest. shop - walk - hip.
Wednesday 28th
Day 5. swim - short time of chest pressure. then swam better. Fingers still tight, stiff, but more dexterity - I could better manage attaching the seatbelt.
Today I feel like I may now be able to investigate learning how to operate the camera - later. rest.
IP level increased today. RUQ thru to R flank. L breast sore. Benicar 5mg Q2 to 3H to manage high level IP. resting. paralytic IBS is back w the high IP.
Thursday 29th
Day 6. woke with back pain. probably partly IP & partly the movement for the hip. all working to the good in the end. swim.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Millie
Member in Phase 3
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
| Posts: | 207 |
| Status: |
Offline
|
|
Posted: Tue Oct 27th, 2009 16:01 |
|
Barb, Its great to see how far you have come with walking, swimming etc. Your podiatrist is right you are a miracle in progress, and an inspiration to me.
Millie
____________________
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.
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Thu Oct 29th, 2009 00:47 |
|
Thank You All ..
Thursday 29th October
Antibiotics: Cycle 1 of 30mg Zith only, once every 10 days. 3pm today will start day 7.
Benicar: Benicar 5mg orally Q3 to 6H as required.
Other meds: 1 panadol prn for pain, muscle soreness. up to 3 per day.
Skin: no light avoidance. but not really 'out in the sun'.
Eyes: some increase in eye sensitivity at times. blurry. sunglasses on in the car & to do backstroke.
-Indoor Pool: 12.5 months of 7 days a week at the pool: 50 to 60 minutes walking and backstroke + 20 minutes exercise. swimming continues to improve.
-on land: walk with wheeled walker at grocery shop & outside at dusk.
Swimming. resting. higher IP this week with new level of Z.. tired, pain.
Symptoms as per previous post - the worst spot lesions on arms are resolving. always new ones.
-abdominal discomfort overall with high IP.
Back & R hip:
Doing regular ROM to get back & hip flexible & moving - so there is some pain associated.
For most of my Life I slept very flat, with a small pillow. The last several years, not sure how long, not sure exactly why, think maybe chest pressure, I have had to sleep with a higher pillow.
Now that I am trying to flex my back, I am lying flat again & the pain in my back tells me it is having the desired effect.
Standing to washup or sitting doing things at the table > back pain.
Weight:
loss.. with zigzag. ie it can increase in 1 weighin, due to unknown cause despite the same activity & diet, & then take 1 month to get back down to the previous level : ( The good news is the trend overall is downward by 6Kg (1 kilogram = 2.2 lbs) I just have to know that overall, muscle, tone, does have to be improving.
It is hard to see out from in where I am, but I am thankful that I am happy to go to the pool, that I have the incentive to keep going at it.
best wishes to all, Barb ...
Friday 30th October
Day 7. Wake w back & R hip pain- ROM. no swim x 2 days due to circs, will do other. IP high level. quiet day. fragile.
Saturday 31st
Day 8. fatigue. Hip exercises. 3 short walks thru the day.
Sunday 1st November
Day 9. I am into day 9 of the z cycle, so far not needing to take the next Z.
I have been able to address 6 envelopes today. that is something I havent been able to do for years. felt stressed after doing all it involved.
eyes. swimming went well. flank pain. rest. short walk at dusk. R hip and body pain. - a short walk involves walk - stop - walk - stop - walk etc.
Monday 2nd
Day 10! 2am 30 mins ROM and stretches. Benicar 5mg Q4 to 6H continued.
1pm becomes Day 1 cycle 2, 30mg Z.
The R hip: I realised that from outside or my Drs view eg it may be thought that my hip is getting worse because I am experiencing pain and difficulty walking any distance on land. But I see it as the pain of rehabilitation as I am constantly challenging it with stretches and ROM both in the water and on land, lying in bed, in the recliner, and walking. I've realised this isnt going to happen overnight, that it is structural and I've got to keep at it. This helps me to be encouraged to keep working it.
Static electricity: I have never posted how, for years, I have been prone to having high levels of Static electricity & who knows, it may be relevant. Walking in shopping centres, if I should touch anything metal, even on my walker, 'crack' can be heard followed by my yell. We have now placed a silver chain linking my walker hand grip to the metal frame to drain the SE off. seems to be working.
Designed a Personal Health Card to be carried by a Family Member. text both sides. Checked w the Dr. happy with the result. vis fyi side 1. Important Information for All Medical Staff| Name DOB Emergency contacts| Hospital Name(ABC), phone number. Dr _ _ requests you telephone the (ABC) physician on call when _ requires medical attention, hospitalisation, or re any changes in clinical condition at any time.
2. (Name) is under the care of ABC.| Please contact: Dr _ _, credentials, position, contact details, or the _ _ unit.| ALLERGIC to _ _ .
Tuesday 3rd Melbourne Cup Day
Day 2. High level IP. body pain. headache, sinus draining. taking Benicar 5mg + panadol to manage. swim. hips & back have stopped "squeaking" when I do body twists. must be progress. : )
Emotionally fragile day. short walk at dusk.
Wednesday 4th
Day 3. woke 3am w painful cramp L calf. took 1 magnesium. I have been feeling some spasms leading up to this but hoping it was nothing. swim. even after 1.5 hours in the pool I was still limping from the effect of the cramp, and the muscle was jumping. I applied cream containing crushed Benicar every 2 to 3 hours and it has been enough that I didnt need to take any orally to manage organ inflammation. resolved enough by late afternoon to take 3 short walks. walking is still a huge effort. painful R hip. I'm pleased I can do it.
Thursday 5th
Day 4. tired - intolerable fatigue today. swim 1.5H. In the last half hour, I have begun swimming half the forward length now practicing forwards stroke more. For all the work I do each day it is a wonder the weight isnt dropping off. just shows it isnt all to do with exercise and diet. the difference of course is that the 1.5H swimming is almost all I can do for the day, in addition to the short walks. : (
3 short walks today. approx 750 metres /half mile total. no hip pain, some discomfort. naps.
Hair: My hair has gone grey practically 'overnight'. quite a shock.
Friday 6th
Day 5. wake 3am High level flank IP. take Benicar 5mg do stretches & shake it all about. very fatigued to go to pool. ok in the water. swim 1.25H. rest. short walk - R hip. nap. short walk. - 3 short walks. a little further today.
Walking: Apart from whether the Hip pains or not, the reason it is something I have to have courage to walk on land is my body feels like it is filled with cement. (maybe plaque?)
Saturday 7th
Day 6. wake 3.30am. do stretches. swim. nap. 2 short walks. computer sort.
Sunday 8th
Day 7. computer. short walk. swim. visited -sat up too long. nap. 3 short walks. body, hip pain. eyes.
Monday 9th
Day 8. am. chest pressure at the pool to start - first 30 minutes. nap. 2pm Day 1 of Cycle 3 of 30mg Z. 3 short walks. when does this become easier?
Tuesday 10th
Day 2. swim - chest pressure first 20 minutes. nap. high level IP this afternoon. esp abdo, depress. Benicar 5mg Q4H. 2 short walks. in the water I can do so much. on land is very hard work for my whole body, ie. apart from the R hip.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Tue Nov 10th, 2009 14:16 |
|
Thank You All ..
Wednesday 11th November
Antibiotics: Cycle 3 of 30mg Zith only, once every 10 days. 2pm today is day 2.
Benicar: Benicar 5mg orally Q3 to 6H as required.
Other meds: 1 panadol prn for pain, muscle soreness. up to 3 per day.
-occasional magnesium to keep cramps at bay.
Skin: no light avoidance. but not really 'out in the sun'. very brown.
Eyes: some increase in eye sensitivity at times. remain glassy, bloodshot, very blurry. sunglasses on in the car & to do backstroke. R eye has a dry patch in it.
-Indoor Pool: 13 months of 7 days a week at the pool: 30 minutes walking and backstroke, 20 minutes walking, backstroke and freestyle + 20 minutes exercise. swimming continues to improve.
-on land: 3 short walks with wheeled walker daily outside late afternoon and dusk. probably 10 minutes each time, with an hours rest inbetween.
Swimming. napping. walks. resting.
Symptoms:
- spot lesions on arms are resolving. the couple pin spots on face remain. noting that I am able to leave them be.
-abdominal discomfort overall with high IP.
-Inflammation R underarm. brush on finely crushed dry Benicar for relief.
-wheezy cough at times.
-Sticky cough on higher IP mornings. I try cough drops, water, quercetin, panadol. 1 day I took double Benicar >10mg & was rewarded with the acute ear pain for a day. esophageal burning today also.
-L upper teeth continue mild when meds are due. lets me know they are there.
-Back & R hip: Doing regular ROM to get back & hip flexible & moving - so there is some pain associated.
-Continue to wake every 2 to 3 hours thru the night and mostly get up at 3 or 4am. wake with flank pain. moving or getting up resolves it.
-Standing to washup or sitting doing things at the table with arms unsupported > back pain.
-Some depressive when MP meds are due. resolves w meds. I am mainly able to be calm thru all.
Continue lying flatter on smaller pillow.
I was able to make a couple errand phone calls one day.
Hands still a little tight but able to flex better and L pinky has only a small ache left now.
lump on R arm remains.
Full Body pufft: can see swelling slowly decreasing on legs.
Because of body, ache, discomfort, heaviness, sludginess, it is hard to see out from in where I am, but I remain thankful that I am happy to go to the pool, that I have the incentive to keep going at it.
It takes a lot of 'guts' for me to do the walking because of my body, but I simply must do it. While I do make brief stops to rest along the way, I no longer have to sit to rest.
I am documenting incremental improvements but cannot say I feel any good. That is what I am wanting - to feel ok and able to do normal things.
best wishes to all, Barb ...
Wednesday 11th
Day 2. no swim due to circs. early morning 2 short walks. high level gut IP all day. rest. 2 short walks late afternoon.
Thursday 12th
Day 3. no swim due to circs. early morning 3 short walks. 5am. 6am. 7am. high level IP at times. nap. rest. 2 short walks later. maybe more exercise or more light is causing higher IP?
Friday 13th
Day 4. short walk 5am. 6am Swim again. over half an hour of chest pressure slowed me down to start. High level IP abdo. dry cough from chest tolerable. total 5 short walks.
Saturday 14th
Day 5. 5 short walks total. swim - chest pressure slows me down for the first half hour. nap. IP is less but still more than enough. can feel crackles in chest - maybe walking is stirring it up. walking is hard work but I want to get better and I make myself go. It is a pleasant walk around a carpark with garden, trees and birds -and asphalt to walk on. Visitor to stay - tired from conversation. Benicar time extended past the 6H a couple of times.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 346 |
| Status: |
Offline
|
|
Posted: Wed Nov 11th, 2009 03:30 |
|
Ip is still tough Barb but you can do so much more now. It is so wonderful how your swimming has progressed.
Good to see you getting so much more out of life,
Lynn
____________________
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
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sun Nov 15th, 2009 19:03 |
|
Thank You All ..
Monday 16th November 5am.
Meds etc continuing as above.
Swimming. napping. walks. resting.
Sunday 15th
Day 6. woke with 'back broken' symptom this morning. no walks today. measured walk path -have been doing approx 1km (5/8 mile) total per day. Swim. short rests. back resolved after regular Benicar 5mg.
New: Treadmill today - this afternoon: With assistance at all times - getting on, during and getting off. Can only manage 1 minute each time... (the longest minute in the world : ) (equal to around 30 metres/yards at a time) and a break time of up to half an hour. most comfortable speed is 2.2 km/hr. Pulse goes to 130 bpm. no hip pain at all on treadmill - not sure why.
Walks: PreMP and the first years of MP. I described walking as the feeling of heavy gravity on me. As much as I am driven to keep striving, I couldn't push thru it. The last 2 years, attempts to do even small amounts of walking, even in the pool, would lead to sore bottom. Now I am pushing on to do this walking. While I do have overall muscle pain from the swimming and the walking, the sore bottom has decreased - from feeling like it was falling out, to, first, back to the skin feeling it was cracking, and now to an itch sensation. I dont have 'pressure in the bottom' as a symptom as frequently either.
Swimming: Forward swimming (freestyle) is improving from awkward to more flowing, with breathing becoming easier - so I can do more of it each day. I have incorporated it inbetween the last 20+ minutes of backstroke laps because I recover better from the freestyle by doing a backstroke lap than by walking a lap.
No kicking with the swimming yet: kicking increases the chest pressure.
Other: The shower chair was no longer required and the ramp in to the house was replaced with a small step from August. I'm still being careful, using rails, and need to be assisted up the stair to be safe.
Dressing: still need assistance.
Acute inflammation areas flare with high IP but have mostly resolved. Abdo or gut herx, including RUQ, has been with me since starting MP and still reaches high level. is managed by the MP meds + panadol at times + rest/lie down stretch out.
Puffiness, inflammatory density, weight: slowly decreasing.
Going back thru some old records, I can see I have improved mentally and emotionally. I'm not strong yet, still fragile. managed by MP meds and quiet supported lifestyle. PreMP I was on antidepressants and then Natural Progesterone pre and early MP.
Today is Day 7. 4am I wake with muscle pain - I get up, do some sitting ROM, stretches. swim.
best wishes to all, Barb ...
We have just been into town to get some computer accessories. Once again, I am shocked with how difficult it is for me in the real world. I forget inbetween times. aahh well. not to mention the heat. Benicar 5mg required more frequently for the rest of the day.
Apart from going to the shops, I have been too sore to do any walking today. the treadmill had more pull on my body than ordinary walking.
Late afternoon when the sun was low, went for 400m walk, and then some 1 minute stints on the treadmill later.
Tuesday 17th
Day 8. still feeling the effects of yesterday. Swim. walk around grocery. nap. treadmill. Mobile hairdresser - haircut. short walk outside. very tired.
Symptoms (RUQ) escalating, unmanagable, as per usual end of cycle showing the need to take the next Z dose. If I leave it too long to take the next dose, it takes more days to get on top of the symptoms. 2pm Cycle #4 30mg Z Day 1.
Meds: It is always a fine line to balance for me re my meds.
-Not enough antibiotic and the symptoms are intolerable and cannot be managed by Benicar or anything else.
-and also I have to take care not to increase the antibiotic dose level too much or too quickly to avoid intolerable levels of IP.
- The plan is to increase Z by 10mg at a time. particularly assessing after 3 doses at each level.
-The IP in this last cycle (#3) was a high enough level that I dont wish to increase the Z dose. But if this next dose (Z 30mg again) should turn out not to be enough to keep the symptoms managed, I will start a new cycle with a higher dose level (Z 40mg).
Wednesday 18th
Day 2. Swim - working hard at it -slow for chest pressure for half hour. sorting computer. treadmill. rests. Less walking last 2 days. mild sore bottom effect + overall tired and muscle aches. taking it a bit easier. plenty IP, body working hard.
Thursday 19th
Day 3. short slower walk. Took 1 aspirin pre swim to see if it helps the chest pressure. - next to no chest pressure today : ) Doing 80 minutes pool most days. nap. rest. rest. rest. very short walk. I have slowed down with the walking, cant do as much. no treadmill.
R Hip: there seems to be something in my groin that needs stretching- can feel it stretch, so give it plenty of work.
I think that I must be improving incrementally all the time but it is natural that I want to FEEL better and have the dignity of having a "Life". Feeling bad makes it seem neverending no matter what the recorded improvements : )
Friday 20th
Day 4. woke w headache. very short walk. half an aspro before swim. swim, mild chest pressure. rest. gut herx high level, had a nap > relief. tired, quiet. very short walk outside at dusk.
Saturday 21st
Day 5. woke with body pain. no walk. very sluggish body. nap. soooo tired but still went to swim. nap. just managed a little walk outside at dusk. wondering if the aspirin caused the extreme fatigue last 2 days? could be anything.
As a movie on tv started today with the old fashioned steam train quickly puffing along, it took me back to my own long ago - where I could now recognise that I had been living as basically depressed 'unhappy and carrying a lot of emotional baggage'. Coincidentally, it is now an anniversary of 10 years since significant change for the better began. It has all been a huge process and I am thankful for all the support that has brought me to here and carries me forward.
Body movement: I am able to move very well in the water - can swim, do exercises etc. all joints are quite flexible and muscles will move well. ie well 'for me' : )
On land I feel really sluggish and hard to move around. Going for a walk is a real effort. I couldnt possibly do any of these exercises out of the water.
While trying, and doing what I can physically does help, it isnt going to "fix me". (referring here to those (non MP) who think exercise will be the answer for me) I continue to persevere with the MP as I can, with hope for eventual resolution.
Sunday 22nd
Day 6. woke with body, esp back pain 3.30am. sat up for awhile. had to take panadol. The IP this cycle has changed. still intense but in a different way. interesting to observe.
new: 4.30am. 15 minutes short walk around houseyard. a few steps, stop, a few steps, stop.. without walker. can feel tension in hips. pain R hip. 5.30am another short walk w walker. did ok. nap. Swim. nap.
Fasting BSLs (blood sugar levels) have dropped from 7+ to 6.9 this last month.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Dr Trevor Marshall
Research Team
|
Posted: Sun Nov 15th, 2009 20:47 |
|
The shower chair and the ramp in to the house were no longer required from August 
|
BARNEY
Moderator
|
Posted: Mon Nov 16th, 2009 00:47 |
|
Hello Barb,
Ditto Dr M.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
|
marion villa
Member in Phase 3
|
Posted: Tue Nov 17th, 2009 01:22 |
|
TREADMILL!!!!!!!!!!!!
Oh my God
congratulations that's a big one Barb
Marion
____________________
Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
|
|
|
|
|
|
