Re: Digest Number 2168

[Guest guest]

In a message dated 3/24/02 11:37:20 AM Pacific Standard Time, writes:

Hi Harper!

Is that hospital in the Bronx Area of NY?

tony

I don't know where in New York Mt. Sinai is located. I'm in San Francisco. However, I can look it up on MapQuest or Google a little later. Mt. Sinai was sued for wrongful death a few years ago, in the notorious Libby Zion case. A usually healthy young woman, a physician's daughter, went in for something rather minor and died very unnecessarily. I don't remember the details.

Harper

[Guest guest]

In a message dated 3/24/02 11:37:20 AM Pacific Standard Time, writes:

Prednisone

Called my Doc on Monday and today is Sat. and no call back Hes on Vacation.

Randy, doesn't your doctor have some sort of backup arrangement? This doesn't sound right.

Harper

[Guest guest]

In a message dated 3/24/02 11:37:20 AM Pacific Standard Time, writes:

Just to let everyone know who so kindly asked how I am now yesterday I managed to get out of the house with out using my wheelchair it felt so good but come the evening I was exhausted.

I went to church last night and said a silent prayer for everyone and sent out lots of love to you all. Jeanette UK AIH dx 1998 Cirrhosis dx 2001.

PS Does any of this letter make sense to anyone My brain and body are not working to well today. Big Hugs

Good for you, Jeanette! The trip out must have been a major adventure! Yes, your letter is perfectly coherent. You may be doing better in general than you think. Best wishes,

Harper

[Guest guest]

Kim-

You're confused about the diagnosis because you've done the research and you know the definition of poly is > 4 joints. I can only guess that, if you're sure Adrienne's doctor didn't find additional swollen joints, he's calling it poly because she has it in a finger (and he must be assuming it's going to move into the other fingers). Pauci kids usually have swelling in the large joints, not digits (and it's usually asymetrical). If there are any exceptions to this, I'm sure someone here will speak up and let you know. I'm not sure how long it's been since your daughter was diagnosed, but the diagnosis is based on how many joints are affected in the first six months. I'm surprised he has her on prednisone given that she only has two joints affected . . . and I'm also surprised it's not helping. My daughter has pauci and it presented in her right knee only. NSAIDs did not help much, and during the first year we were able to get it under control with a joint injection. She was symptom free for a year:-) If it's Adrienne's knee that's giving her so much trouble, you might want to discuss doing something like that before moving to DMARDs. 's doctor did suggest methotrexate after the NSAIDs weren't showing much effect (after about 6 mos), but I wanted to try the injection before going there. It worked. When flared again, it had moved to four joints (knee, ankle, wrist and elbow) and we did go with the methotrexate (which also worked and is continuing to work):-) You don't want your child to be in pain or to let it go so long there's joint damage, but on the other hand, you don't want to jump the gun before a medication you're trying has a chance to work. The best advice I have is to learn as much as you can and to ask your daughter's doctor about anything you don't understand or that doesn't make sense to you. Warm baths, warm jammies, electric blanket . . . things like that might help Adrienne keep her knee more comfortable and sleep better.

Diane (, 4, pauci)

[Guest guest]

Hello all,

Sorry I've been lurking for a bit. I've been dealing with progression of this

complicated disease and all the while trying to keep a positive outlook; not

feeling too positive these days. When I was diagnosed a year ago this month, I

had problems with my left wrist and was starting to have problems in my right

wrist. The MTX and Naproxen combo seemed to work for a few months, but by May

the left wrist had gotten a bit better, but the PA in my right had gotten worse

and I was starting to have neck problems. My rheumy upped the MTX to 15 mg a

week (no problems with that other than occasional little sores in my mouth) and

for a few months the wrist inflammation seemed to calm down. The neck problems

continued and I was referred to a chiropractor (actually made it worse this

time) and physical therapy (not holistic enough, just temporary pain relief). I

was already getting acupunture and doing some walking and tai chi for exercise.

This past month I can feel that the PA is racing through my body looking for a

home. Both my wrists are painful, can't support weight and make it difficult to

just hold eating utensils (limited rom and bones crack). My left ankle, lower

leg and knee hurt and occasionally I have pain around my left shoulder blade -

feels like a cramp. Most of my pain however is on my right side with everything

radiating out from a painful shoulder, up my neck into my skull, and down my arm

to my right hand (middle, ring and pinky finger are somewhat frozen and

twisted). I have a rheumy appointment in 2 weeks and I think he will increase

the MTX to 20 mg - hope that helps.

My question to the group now concerns the problems with my neck. I'm usually not

in pain if I don't move. As soon as I move my head in any direction, or get up

after sitting down for a while, it feels like my neck muscles are being torn

from the inside of my skull. They cramp up and feel like a hard rope. It even

bothers me sometimes to just swallow - I can feel the muscles protesting.

Rolling over in bed is a trial and I have difficulty raising myself up when I am

on my back - have to roll over first. Does anyone else experience something like

this? What is this called - part of the PA? I am never pain free -even with

Naproxen twice a day. Must say I have some good days - less pain - but am

increasingly having bad days. Not good for trying to keep the spirits up.

Any help/advice/suggestions would be so very welcome. Thanks and blessings to

all.

e van Gils

[Guest guest]

e,

e, excellent description of your symptomology. Reading it, I

found myself nodding, and vocalizing a " Yup, that's it, " a couple of

times. You really took me down memory lane. (I have PA in heels,

ankles, metatarsal arches, knees, hips, SI joints, shoulders, neck,

etc.), and Ankylosing Spondilitis. But the times when intense, severe

flares took it over top--and into the stratosphere--was when the

muscles, tendons, and ligaments throughout my back, arms and neck got

involved, nearly paralyzing me with pain. It came on suddenly most

times, too: I'd go to bed with maybe--just maybe vague forebodings

and hints of " something nasty this way comes " --and waking up nearly

helpless, frozen in pain. And it didn't loosen up (very much, anyway)

as the day progressed. Trying to get into a car to get to the doc--

boy, Am I glad our bodies don't actually, physically remember the

sensation of pain that well. My doc at the time referred to the

attack as polyarthritis including involvement of soft tissues as well

as the joints. The good news, such as it is, is that the condition is

much more amenable to aggressive medical intervention than the

skeletal/joint pain. A cocktail of Valium alone or with a muscle-

relaxant, together with a little oxycodone, and back to bed 'til

things loosen up. [Of course, after such therapy, you need a

chauffeur...)

D.

> Hello all,

>

> Sorry I've been lurking for a bit. I've been dealing with

progression of this complicated disease and all the while trying to

keep a positive outlook; not feeling too positive these days. When I

was diagnosed a year ago this month, I had problems with my left

wrist and was starting to have problems in my right wrist. The MTX

and Naproxen combo seemed to work for a few months, but by May the

left wrist had gotten a bit better, but the PA in my right had gotten

worse and I was starting to have neck problems. My rheumy upped the

MTX to 15 mg a week (no problems with that other than occasional

little sores in my mouth) and for a few months the wrist inflammation

seemed to calm down. The neck problems continued and I was referred

to a chiropractor (actually made it worse this time) and physical

therapy (not holistic enough, just temporary pain relief). I was

already getting acupunture and doing some walking and tai chi for

exercise. This past month I can feel that the PA is racing through my

body looking for a home. Both my wrists are painful, can't support

weight and make it difficult to just hold eating utensils (limited

rom and bones crack). My left ankle, lower leg and knee hurt and

occasionally I have pain around my left shoulder blade - feels like a

cramp. Most of my pain however is on my right side with everything

radiating out from a painful shoulder, up my neck into my skull, and

down my arm to my right hand (middle, ring and pinky finger are

somewhat frozen and twisted). I have a rheumy appointment in 2 weeks

and I think he will increase the MTX to 20 mg - hope that helps.

>

> My question to the group now concerns the problems with my neck.

I'm usually not in pain if I don't move. As soon as I move my head in

any direction, or get up after sitting down for a while, it feels

like my neck muscles are being torn from the inside of my skull. They

cramp up and feel like a hard rope. It even bothers me sometimes to

just swallow - I can feel the muscles protesting. Rolling over in bed

is a trial and I have difficulty raising myself up when I am on my

back - have to roll over first. Does anyone else experience something

like this? What is this called - part of the PA? I am never pain

free -even with Naproxen twice a day. Must say I have some good days -

less pain - but am increasingly having bad days. Not good for trying

to keep the spirits up.

> Any help/advice/suggestions would be so very welcome. Thanks and

blessings to all.

>

> e van Gils

[Guest guest]

You have a very good point about the stress Ale. I have been on a very strict Candida diet for four months and fell ill again last week. I couldn't for the life of me figure it out since dairy, wheat, sugar, etc., etc, had not touched my lips in ages. And then it occurred to me that a couple of days earlier I had been snowmobiling with my DH. The ice conditions on the lake had been less than stellar and I had become frightened on more than one occasion. (Actually, at one point, I thought I was about to meet my Maker - such was the scare!). Later, I was discussing this with my ND and he agreed that the old adrenals were overburdened.

So yes, reducing the stress can certainly do nothing but help. (That also includes seeing less of negative people, etc.)

You might also have a point about the crying. "Real life" never makes me cry (though I wish I could). Sad movies, however, are another matter - maybe I should go to more "weepies" just for release.

And finally, I don't "sweat" either - which I know is not healthy. Soaking in Epsom salt baths has also helped me tremendously this week - gets a lot of the toxins out. You might add that to the meditation.

Good luck in your quest for good health and serentity - p.

Re: Digest Number 2168

Hi,

I know this won't help anyone but I also have observed that stress is the main factor in my "yeast attacks" (this is how I call them).

[Guest guest]

Hi Jen:

I understand how you could be a bit " leery " of meditation because to our

western ears, it does sound a bit " hocus pocus " .

A few years ago - in my never ending quest to get well - I learned how to

meditate. The concept is really simple - you are only trying to quiet the

mind and calm the body.

I don't think I ever got good at it but it isn't the " succeeding " with the

meditation, its the trying.

Just sit somewhere comfortably (if you lie down you might fall asleep) and

concentrate on breathing deeply in and out. You may use a sound as you

breathe out ( " Ohm " is a common one - but any soothing or favourite word will

do). As other thoughts start to intrude (and they do, they do) - try to

ignore them and get back to concentratiung on the breathing. You aren't

supposed to be thinking about anything - that's the point. At first, you'll

have a hard time NOT thinking about other things because the mind always

wants to be in gear. But again, its the trying and the practice that

counts.

As I said, I never became good at it (and I am sure there are good people

here who know a great deal more about it than I do). But I just wanted to

tell you that there is nothing wierd or scarey about it. It merely calms

the body. - p

[Guest guest]

Jen - Ah, good that you are on vacation. You can spoil yourself a little!

All I ever heard growing up was how selfish I was (I wasn't) - so spoiling

myself has always been hard on my conscience. (I've never had a massage or a

professional manicure or a pedicure, etc. I just can't get beyond that

" spoiled " moniker) But I am definitely getting better at it. Because I

have found that taking extra time for myself does help. Especially when I

am " in crisis " , as I have been this week. My bathroom is a soothing oasis.

Lotsa fluffy towels. Soaking in warm lavender-scented epsom-salt tubs.

Other things I can think of offhand .....Just sitting in the rocking chair

cuddling the cat for five minutes. Saying " no " when I know it's going to

stress me.

And has meditation helped me? Yes, sometimes it has been very effective.

And it doesn't always have to be the Transcendental type that I was

describing earlier (by the way - I forgot to tell you to close your eyes

while meditating - but I imagine you know that. LOL)

.....As I was saying, you can also buy various relaxation tapes which might

help. (Not sure where you'd get them - maybe someone else could help

there). I recall, for instance, a day when my son was about 5 and I had the

house full of demanding relatives and screaming, tearing-around kids. I was

stressed to the max. My brother-in-law must have noticed my crazed look and

suggested we go somewhere quiet 'cause he wanted to play an anti-stress tape

for me. At that point, my thinking was, I'll amuse the nutsy BIL just to to

get away from the noise and bedlam. So we trot off to the bedroom - he in a

chair, me on the bed. And he starts this tape of a guy named

Ralph.............. whose dulcet tones eventually lulled me like I can't

tell ya.

Anyway, apart from the fact that neither of us factored in the rest of the

relatives seeing us emerge from the bedroom together 20 minutes later(what

a hoot) - I was calm as a mill pond. Even took four wiggling kids to the

movies later that day and didn't tear one hair out (mine or theirs).

Another form of relaxation is putting on some soothing music - nature stuff

with loons and/or twittering birds and waterfalls. Or Pachabel. And

sitting back in an easy chair.

Anyway, I'll bet you can think of lots of calming things - do have fun and

peace. - p

[Guest guest]

In a message dated 2/15/2004 6:10:52 AM Pacific Standard Time, puhutes@... writes:

*8-)PS. I too am one to hold things inside and I had a lotof trauma growing up in my childhood

Hi .

I am just like you. I actually had a doctor tell me that I live in constant fight or flight mode from childhood trauma. my shoulders also clench up, neck gets tight but I feel calm. I have really been working on the "holding things inside."

You don't have to be religious to meditate. Choose a word that is calming or phrase that is calming. You could say, "i am feeling relaxed and in control," it's just something to keep your mind focused so you don't start thinking about everything you need to do, etc. Plus positive affirmation is really good. It helps reprogram our thinking from any old negative "tapes" we have made ourselves. I have a good friend who is a hypnotherapist and she has made me some great relaxation tapes. Those help a lot.

I am a major lurker on the list. July of 2000 I got the flu that never really went away. Dec of 2000 I was diagnosed with Chronic Fatigue Syndrome. June of 2002 I got a yeast infection that I have been battling ever since. I had a test from Great Smokies that told me what kind of natural and pharmaceutical things that would help but so far nothing is helping long term. I am researching about getting my silver fillings removed. So I am playing detective. When I figure out what works for me I will definitely share with the group.

Blessings,

Sally

[Guest guest]

In a message dated 2/17/2004 10:14:36 PM Pacific Standard Time, puhutes@... writes:

The meditation wasn't too bad either!Health and healing *grins* I did it for about 15minutes but I have a few questions. I felt quiterelaxed when I was done, but I also did a bit ofstretching while I was doing it. Is that ok? Justtilted my head, leaned over a bit. Afterwards I felt alittle tingly in my legs... maybe they were fallingasleep I also yawned a lot... I'm not sure ifthat's normal or because I was tired. But it definatlywasn't as weird as I expected it to be. I

Hi I think that is fine. It's hard not to fidget, or move a little. The more you do it the better you get. I don't think there is a hard fast "rule," i think if you find something that works for you, then you have accomplished your mission. =) I am very good at self hypnosis, so I can really get into it, but there are days I feel more close to the top where I fidget or little thoughts creep in. In just takes practice. I think you will really like it.

I too amresearching amalgam removal. I had my first holisticdentist appointment last week. My gingivitis is reallyfreaking horrible *something my old dentist neverreally commented much on*. First they will work to tryand get rid of some of the gum inflammation and healthem a bit, then they will work on removing theamalgam. I'm lucky that I only have one. I really feelsorry for the ones that have spent thousands ofdollars on bridge work and have a mouth full of metal

I read your post about your holistic dental appointment with much interest. I found a mercury free dentist, but she is not holistic. She said she has treated people that say they are better etc. But no first hand knowledge of what we are up against. I would really like to find a holistic dentist like you have. I have 4 fillings, 1 root canal, 1 extraction. So I will be looking forward to what you find out about this. Where are you? Canada, U.S.? I am in the U.S.. Someone had mentioned a dentist in N. California. That is in my neck of the woods not sure if that was you. But I can't find the post to refer back to it.

Take care!

Sally

[Guest guest]

In a message dated 2/17/2004 11:15:18 PM Pacific Standard Time, puhutes@... writes:

Self Hypnosis hmm? What does that involve? Whatdo you hypnotis youself to do?

Hi ,

I have a friend that is a hypnotherapist and I listen to the tapes she made me. I can give you her website if you are interested. She has a FAQ section and you can read about hypnotherapy. She has made me 4 tapes: relaxation, healing on a cellular level, eating right for my body and one for pain relief.

These tapes really work for me when I use them. I have a really bad habit of going for periods of time and not using them. I don't know why I do that. I sleep so good when I listen to the relaxation tape before bed. That is one area I am working on. I think sometimes that's one of the reasons I am ill. I can cut everyone else all kinds of slack but I hold myself up to these high, sometimes unattainable expectations and I don't take the time to give myself a break and take care of myself. I worked 12 hour shifts at a high stress, detail oriented job. Now that I am so sick I cannot work, it's time to change my focus to me.

I am glad this thread came up on this group because this is one thing I know helps me, one small piece of a puzzle of healing. It's really made me think about what I need to do for me. I think this is one of those important things I need to add to my life routine to help me be healthy.

HTH

Sally =)