 |
| Author | Post |
|---|
marion villa
Health Professional
|
Posted: Fri Oct 9th, 2009 20:25 |
|
   !!!!!!!!
marion
____________________
Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, little meloxicam, paracetamol, NoIRs, ,Ph 2 /20 april 2008,25D<4ng,ph 3/ 22 oct 2008.
Some sun sensitivity.
|
Vicki SA
Member
|
Posted: Sat Oct 10th, 2009 00:01 |
|
Congrats Barb on your milestone!
The road is clearly still pretty rocky but may it get smoother as you go. 
All the best,
Cheerio Vicki
____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 15mg, 2010 - cover with light r/t Work 3/7, NoIRs, hat, cover well, May 2012 25D - 9.6
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Sun Oct 11th, 2009 04:04 |
|
For personal reference I am noting here some of the exercises and movements that I do at this time. I make these movements simply to get my muscles & joints moving, flexible. I dont have a manual.
In the water
#1.
Standing - legs apart, arms extended, Star shape. > L arm up, bend to the R, reach R hand down R leg as far as possible 1, 2, 3, 4, 5 times.
R arm up, bend to the L, reach L arm down L leg 1, 2, 3, 4, 5 times
Repeat this for 1 minute. increasing as able.
#2.
Bend down forward to "touch my toes" ... I cannot touch my toes, but the point is to reach as far as I can. This involves taking a breath inbetween before my head goes underwater with each bend forward.
Do this one 20 times. increasing as able.
#3.
Rhythmically reach R arm out & back flat to the middle of the back
then L arm out & back to the middle of the back.
Repeat for a count of 30 times. increasing as able.
Then, legs apart, bend sideways & reach to behind knees.. R side, L side for a count of 30 times.
Repeat for a count of 30 times. increasing as able.
Then bend forwards & reach to inside of knees. R hand to R side, L hand to L side.
Repeat for a count of 30 times. increasing as able.
#4.
Legs bent at knee. Kick leg out and retract back, bending at the knee: Starting with R leg - kick out & back from frontways, clockwise about 7 kicks till kicking at the back, and then kick all the way back to the front again.
Follow same with L leg going anticlockwise & back to the front again.
Do this for 1 minute. increasing as able.
#5.
Stand to balance on L leg
Stand up straight. Extend R leg at 90* angle from hip. To the front. To the R side. To the back. maintaining balance to a count of 5 to start.
Same with L leg to front, L side, back.
Then balance & bend knee, in out, in out, thru the semicircle of each side. back to front, front to back.
Do this for 1 minute. increasing as able.
#6.
Squats.
This involves taking a breath inbetween as my head goes underwater with each squat.
Squat right down as far as I can go, till knees fully bent. then push up to standing. Take a breath & straight back down for next one.
I can manage 24 of these in one go. and am increasing as able.
#7.
Hold arms extended out from the shoulders to the sides, hands cupped. feet maintain contact with the floor of the pool. Turn this way, that way, to put pressure on arms, shoulders, spine.
Do this 50 times or 1 minute. increasing as able.
#8.
Duckdive.
Take a deep breath & dive to retrieve an object from the bottom of the pool. I hold my husband's foot for as long as I can & then come up for air. He counts. at this stage I can stay under for a count of anything from 13 to 17.
I do this 3 or 4 times.
#9.
Swim about 2.5 laps of freestyle 1 lap at a time with a walk inbetween.
#10.
paddle over to the side shelf which is about knee height under the water.
-Hands on shelf & legs extended out lengthways, slowly kick legs (similar to swimming) as a way of stretching body muscles.
-Stand. I lift each leg alternately & touch the shelf with my toes while standing straight on the other leg.
I started off doing this 50 times daily but now do it 100 times.
-Hands on shelf & legs extended out lengthways, slowly kick legs (similar to swimming) as a way of stretching body muscles.
Doing all these takes me about 20 minutes.
Other range of movements: I can do these in the water or out of the water.
Repeat each movement a resonable amount of times. not too many.
While sitting:
-roll neck/head clockwise & anticlockwise.
-Turn head to the R & to the L
-arms extended. roll arms around in a circle forward. then same backward.
-arms extended or on hips: turn body to the Right & then to the Left.
-bend forward as far as I can, & up again.
-Hunch shoulders and roll them forward & then backward.
Many variations of movement to move all joints.
____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Mon Oct 12th, 2009 18:56 |
|
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 Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Wed Oct 21st, 2009 19:09 |
|
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 Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Millie
Member
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
| Posts: | 217 |
| Status: |
Offline
|
|
Posted: Tue Oct 27th, 2009 15:01 |
|
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
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Wed Oct 28th, 2009 23:47 |
|
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 Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Tue Nov 10th, 2009 13:16 |
|
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 Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Sunbeam
member
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 394 |
| Status: |
Offline
|
|
Posted: Wed Nov 11th, 2009 02:30 |
|
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
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Sun Nov 15th, 2009 18:03 |
|
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. and 2 short walks late afternoon.
Flutters like a cat purring in my flank/back muscles.
Fasting BSLs (blood sugar levels) have dropped from 7+ to 6.9 this last month.
Monday 23rd
Day 7. woke w usual back pain. 15minutes walk around yard without walker- 5 steps, stop, routine again. Swim. RUQ is flaring nearing end of Z cycle. Swim(chest pressure) nap. bloating has been a problem recently. some cough. some itch. another 15 minute walk (totter) same this afternoon. bloating! having some tough IP.
Tuesday 24th
Day 8. 4.30am 15 minutes of 5 steps, stop, routine without walker. I have to concentrate on what I'm doing or I can lose my balance and footing. Interesting to feel different muscles than when I'm using the walker. eg R shoulder hurts with arm hanging instead of holding walker. Back muscles feel near breaking when I sit afterwards. Thigh muscles working hard. R hip muscles set the limit to how far I can go.
3H of Pain R side from flank thru to RUQ. Benicar 5mg, panadol. Swim. nap. RUQ high level all day incl last night. Benicar 5mg Q4H + panadol. 15 minute stop start self walk late afternoon. RUQ is humming.
8pm. RUQ largely resolved and persistent dry chesty cough begins.
My freestyle (forward) swimming has gone from 'unable', to 'trying', at begin September 09, to 'relearning' awkward, hard work, to now fluid swimming for 10 metre every 2nd lap, alternating with the 20 metre backstroke lap for half an hour.
Knees: Getting up from the recliner chair and out of the car with noticably more ease now. (I thank the squats in the pool for this. I can now do 30) but still sitting on elevated recliner and chairs.
spot lesions have resolved now. (I think they actually activated exponentially when I used Benicar topically)
Wednesday 25th
Day 9. throat/chest. 15 minute stop start self walk 4.30am. R side pain. fasting blood tests after swim this morning. will probably take Z dose later - cracked corner of mouth.
____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Dr Trevor Marshall
Foundation Staff
|
Posted: Sun Nov 15th, 2009 19:47 |
|
The shower chair and the ramp in to the house were no longer required from August
|
Barney
Support Team
|
Posted: Sun Nov 15th, 2009 23:47 |
|
Hello Barb,
Ditto Dr M.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis, asthma, fibromyalga, diabetes, left kidney only. Started MP 1/1/05. Benicar only since 9/2007. 11/11/12 had a heart attack, 1 81mg asprin, diabetes blamed for this. Heart is regenerating new veins to replace the ones that died. Doing great.
|
marion villa
Health Professional
|
Posted: Tue Nov 17th, 2009 00:22 |
|
TREADMILL!!!!!!!!!!!!
Oh my God
congratulations that's a big one Barb
Marion
____________________
Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, little meloxicam, paracetamol, NoIRs, ,Ph 2 /20 april 2008,25D<4ng,ph 3/ 22 oct 2008.
Some sun sensitivity.
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Tue Nov 24th, 2009 22:25 |
|
Thank You All ..
Wednesday 25th November 9am.
Antibiotics: Cycle 5 of 30mg Zith only, once every 8 to 9 days. 9am today is day 1.
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 when I feel muscles spasm to keep cramps at bay.
Skin: no light avoidance. but not really 'out in the sun'.
Weather is hot.
Eyes: remain glassy, bloodshot, 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, 30 minutes walking, backstroke and freestyle + 20 minutes exercise. swimming continues to improve. took 3 months practice from unable to swim freestyle to swimming 10m at a time normally. note: info: 1 metre is 3" more than 1 yard.
-on land: short walks without wheeled walker daily outside 4.30am and late afternoon / dusk. 15 minutes each time of a few steps, stop, steps, stop. full concentration to keep balance. can feel tension in back, thigh, and shoulder muscles. no treadmill.
Swimming. napping. walks. resting.
Symptoms:
-Abdominal discomfort overall with high IP esp RUQ.
-Body ache overall
-Inflammation R underarm.
-wheezy cough is increased at present.
-Sticky cough on higher IP mornings. I try cough drops, water.
-L upper teeth continue mild when meds are due. > makes more swelling L glands.
-Back & R hip: Doing regular ROM to get back & hip flexible & moving - so there is some pain associated.
-Wake for Benicar thru the night and mostly get up at 3 or 4am. wake with flank pain. moving or getting up mostly resolves it. sometimes panadol.
-Havent done much this week of standing to washup or sitting doing things at the table with arms unsupported.
-Some fragility at times, otherwise calm.
-Feet: dry heavy skin continues. Soles: some neuropathy.
-Flutters in my flank/back muscles. esp L.
Knees have improved but still needing elevated recliner and chairs etc.
Hands: tightness and paresthesia continues to resolve.
Spot lesions on face and arms are resolved.
Lump on R arm 'may' be resolving. not sure.
Full Body pufft: can see swelling slowly decreasing on legs.
best wishes to all, Barb ...
this afternoon: nap. 2 short walks - few steps, stop, steps, stop. husband says my walking is improving. (4th day now) Walking isnt entirely accurate as it is more a totter. every dip or bit of uneven ground is a challenge.
Meds and sipping water to keep persistent throat/chest cough settled.
Thursday 26th
Day 2. woke coughing/chest. ugh. hoping to overcome it quickly. 4.30am. short, steps stop, 'walk'. Swim.
taking meds, sucking cough drops, sipping water for cough. nap. cough is a little better. 2 short, steps stop, 'walks'. cough slowly improving after gallons of water and Q3H Benicar + panadol + cough drops.
Friday 27th
Day 3. 4.30am short, steps stop, 'walk' (legs heavier). cough improving, looser. Swim. nap. Benicar 5mg continues Q3H. thumb inflamed, dont know why.. topical benicar relieves. tired. herxy abdo. nap. 2 more short, steps stop, 'walks' late afternoon. cough almost resolved with Benicar 5mg continuing Q3H. RUQ.
Saturday 28th
Day 4. 2 short, steps stop, walks 4.30 am and 6am - heavy going. cough managed with Benicar 5mg continuing Q3H with an occasional s/l. no swim today due to circs. rest. thumb is ok today. nap. 2 more short, steps stop, 'walks' late afternoon - heavy going.
new: practicing small step up with R leg now. wasnt possible before.
IP is a battle to manage all day. IP abdo and cough. Very hot day.
ears: when I walk ears feel or sound to be 'full', esp L.
Sunday 29th
Day 5. slight decrease in weight. 2 short, 'walk, stop' walks 4.30 am and 5am - heavy going, R hip. High level RUQ IP and cough. Benicar trial increase to 10mg this morning as 5mg isnt relieving. Swim 95 minutes. nap. IP is over the top- R side abdo. Benicar 10mg Q2H. will try to ride it out.
Monday 30th November
Day 6. IP a better night - Benicar 10mg at 5H and then more frequently today. muscle sore. short walk 4.30am. Swim 90 mins. ground to a standstill, no afternoon walks, too much IP. 4pm new cycle Z.
I will continue to use the walker where there are people so that I have balance and safety and a seat to sit on. Hopefully my R hip will be getting better with the work.
I am shocked that my hair has gone grey so suddenly.
Because these 30mg doses were the first accurately measured dose levels, I took the cycles as far as I could to explore if my response to the meds has changed and now know that it hasnt. knowing this will help me to know/plan when it is time to increase before symptoms become too high level, - which is the complete opposite to most people on MP who have to increase the dosage when the IP subsides. ie plan for me will be after 3rd cycle at dose level.
The Benicar stopped having any relief effect and I noticed a symptom that is a flag to me to change things. and then I could see that I had actually been having the other flag symptoms but was so overtaken by the high level RUQ IP and wheezy cough that I wasnt seeing them clearly. I took a 40mg dose of Z (increase) and it all started to settle. Benicar 5mg continued as needed.
December 1st
Day 1. Cycle 1, 40mg Z. Benicar. very short walk. Swim. wheezy cough. Hearing test- perfect hearing. 2 short walks this afternoon. a quiet steady day- a bit seedy.
Wednesday 2nd
Day 2.
____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Barney
Support Team
|
Posted: Fri Nov 27th, 2009 03:12 |
|
Barb,
Been reading your post today. I feel so humble compared to what you are/have been going thru.
You have come a long way since I started MP.....but there seems a long way to go....but I am sure you will make it with your determination.
I have a question.... you have had a big go around w/diabetes. Did you have diabetes preMP? Are you adhering to a very strict diet in order to keep it down? Did you tolerate the insulin when you took it? You know I am asking for my own guidance and any help I can get from anyone who is/has diabetes.
Keep up the good work Barb, you are a real trooper.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
Last edited on Fri Nov 27th, 2009 03:14 by Barney
____________________
Sarcoidosis, asthma, fibromyalga, diabetes, left kidney only. Started MP 1/1/05. Benicar only since 9/2007. 11/11/12 had a heart attack, 1 81mg asprin, diabetes blamed for this. Heart is regenerating new veins to replace the ones that died. Doing great.
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Fri Nov 27th, 2009 04:22 |
|
Thank you Barney
No I didnt have diabetes PreMP. I had hypoglycemia PreMP.
Diabetes began Oct07 just before I went to hospital, and was in till Dec - after trialling the steroid Dexamethasone to control the IP from end July07.
The Blood Sugar Levels (BSLs) were off the top of the monitor.
Dec07 I came home on 25units of mixtard insulin BID
I decided to wean it down by 1 unit weekly - BSLs remained stable
Stopped Insulin 21st August 08. BSLs have remained stable.
I was on steroids and then weaning them some of the time I was on the Insulin. I refused to take the oral diabetic medication.
HbA1c has since been within normal range.
BSLs are now, in 09, actually decreasing by approx a decimal point per month - perhaps due to the amount of physical activity with swimming and 'walking'.
I no longer have hypoglycemia.
Between July 07 and Sept 09 I have been off and on various MP antibiotics and trying various dosing of the Benicar to try to find some sort of tolerable for me. What I have now keeps the inflammatory symptoms managed and is as close to tolerable I have ever found so far. (see above posts for details)
Weight and puffiness increased on MP. both decreasing slowly now.
Diet: I have what is/has always been a normal diet for me. a healthy balanced diet. no eggs and no fish for 5 years and now perhaps 1 serving per month. we cook most of our own food. chicken, vege soups, meat and veg, salads. fruit. a small piece of chocolate for a treat once per day or less. a small portion of 'carb' once per day average. maybe a dessert on a Sunday. I dont naturally want to drink water so I have to make myself do that. I tend to eat smaller 'meals' more frequently. eg when someone else would have morning or afternoon tea, I would have some of my vege soup to fill me.
Barney, I hope this helps. all best wishes, Barb ..
____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Barney
Support Team
|
Posted: Fri Nov 27th, 2009 04:45 |
|
Thank you Barb for all your answers.
We had a guest for lunch today so I made a loaf of French bread in my breadmaker. You know of course, I had to eat a piece w/butter and I had no pie or any other desert, I did not overeat and my sugar went clear up to 552.
I am at my wits end, my diabetes is the only thing not getting better on MP. Everything else is wonderful.
I have been over 250+ for more than a year now, I cannot take insulin, I cannot stand the pain in my head when I use it. I finally figured out why the diabetic pills make me sick and give me pain in my head is because they are sulfa based. I do not heal like a diabetic, I heal quickly whenever I have a wound.
I am at a loss of what to do next. I have thought of stopping the Benicar for a couple of days and see if it is false readings.
Any ideas you have will be appreciated....I just don't know how I can restrict my diet any more....I am becoming bitter over such restriction. No D and glucose restrictions are rough.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis, asthma, fibromyalga, diabetes, left kidney only. Started MP 1/1/05. Benicar only since 9/2007. 11/11/12 had a heart attack, 1 81mg asprin, diabetes blamed for this. Heart is regenerating new veins to replace the ones that died. Doing great.
|
Aussie Barb
member
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19539 |
| Status: |
Offline
|
|
Posted: Fri Nov 27th, 2009 05:15 |
|
Dear Barney
I dont believe butter or fats are a problem. (Atkins type thinking)
I wouldnt stop the Benicar. IMO, trialling a decrease in dose for a time is a better option.
all best, Barb ...
____________________
♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
|
Barney
Support Team
|
Posted: Fri Nov 27th, 2009 05:19 |
|
Thanks Barb....I will give that a try.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis, asthma, fibromyalga, diabetes, left kidney only. Started MP 1/1/05. Benicar only since 9/2007. 11/11/12 had a heart attack, 1 81mg asprin, diabetes blamed for this. Heart is regenerating new veins to replace the ones that died. Doing great.
|
eClaire
Member*
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1495 |
| Status: |
Offline
|
|
Posted: Sat Nov 28th, 2009 01:49 |
|
Barb, It is great to see all of your hard work starting to pay off. Claire
____________________
12/2006 (-2 mo); CFS FMS MCS COPD hypermob IBS/GERD osteopor food/animal/plant allergies; sleep difficulties, exhaustion, muscle weakness, pain, post exertional malaise; 25D<4 summer 2010
|
|
|
|
|
|
