Hello

February 8, 2002

Hi Suzanne,

At 09:37 PM 2/5/02, " Suzanne " <suzshay@...> wrote:

>You started on a pretty high dosage of prednisone, compared to me. Have you

>been sick for a long time, or just much worse symptoms, I wonder? I can't

>say, after 2 treatments with methotrexate, that I really notice any change

>in the way I feel. The closest I might come, is that the day after I take

>it (I take it Friday nights), I feel *really really good* on Saturday. Like

>I could take on the world good.

They put me on the high dose of Prednisone when they admitted me to the

hospital because I had fluid around my heart (pericarditis). When I went

home four days later I think the Prednisone had already been reduced to

something like 40 mg. from the 60 mg. they started me on. The doctor told

me that normally he would just give me the Prednisone and not admit me to

the hospital but because of it screwing up my blood sugar, I had to have a

nurse administer insulin and show me how to do it myself. In retrospect, I

think he just told me that so I wouldn't worry about the pericarditis and

it is the REAL reason he wanted me in the hospital. At the time this

happened I had been in REALLY bad shape for about three months and hadn't

yet been diagnosed with RA.

> This past Saturday I headed for the gym as I

>always do, jumped up on the treatmill, walked 12 min, jumped on the

>stationary bike for 5 min, then went off to the pool and hot tub for the

>next 30 min. At the time, it felt great. Later that afternoon, I had pain

>in my shoulders, arms and wrists/hands like I hadn't since I first started

>the medications. Did I overdo it? or coincidence? Who knows. By Sunday, I

>was pretty much back to " normal " . I'll take this return to more strenuous

>exercise a little slower, I think. What does everyone here do for exercise?

>Are certain exercises better than others?

I don't exercise though I know I should. I actually have a membership at

the YMCA but have only been in the place once just to check it out. My

docs are after me to at least walk everyday and I know I should but haven't

figured out how or when to fit it into my routine. I have read that

exercising, in moderation and when you are able with RA is important

because the strengthening of the muscles will help support the joints when

they act up and bother your. It sounds to me like you really overdid it

and I'm sure others on the list more knowledgeable on this will get back to

you with better information and specifics. I know one thing that is

supposed to be good for us is to do the water exercises. Back when I was

first diagnosed, the rheumatologist asked me if there were any classes like

this in my area. I told him that, coincidentally, I had just recently seen

an article about it in our local paper. He suggested I sign up. I told

him there was also a picture with the article and it was a bunch of white

haired old ladies. His response was, " Well then you should be very

popular! "

>I'm taking 3 - 2.5 mg of methotrexate weekly. I've heard 3 - 5 months, to

>6 - 8 months, before I'll notice a difference. Does that jive with others

>here?

I'm thinking I've read something like a couple, 2 to 3 months. I can't say

for sure in my case because I was lowering the Prednisone while I started

taking the Metho and so I never really noticed a change in how I was feeling

> >The only problem is that

> > it is possible at some point for the treatment to not be effective anymore

> > and then they have to try and find something else which will work. So I

>am

> > making hay while the sun shines, as they say, and trying to get my

>basement

> > remodeled so I can build my big model railroad set up which is my hobby

>and > passion.

>

>This is wonderful!! No sense in worrying in advance what might happen down

>the road. I say seize the day! The positive effects of feeling good again

>and doing something your have a passion for is the best medicine in my book

>and makes life worth living. We'll all have to deal with " what to do next " ,

>if and when symptoms worsen.

When all of this started, a friend of mine in the hobby confided that he

has, I think he said, OA, and takes 4 mg. of Prednisone for the last couple

years. Anyway, I told him maybe I should wait and see how I end up with

the RA before I start building the train tables. Or that maybe I should

build it at wheel chair height instead of at the normal standing height, or

that maybe . . . His response was that maybe I should just BUILD IT and

plan for the positive rather than the negative. I still wonder sometimes

if I am doing the right/best thing but at least I am doing it.

>Were you diabetic, or leaning that way before your treatment with

>prednisone? I'm not anxious to have a new complication enter my life...

I had been diagnosed with type-2 diabetes a couple of years before the

whole RA thing started and had been taking a daily pill and

" somewhat watching my diet to treat it. I was surprised to recently read

somewhere that diabetes is considered an immune disease type thing, too.

>I have been fighting

>fatigue for about 1 1/2 years. I have been ignoring it, and pushing myself

>when all I wanted to do was stop and take a nap. I had 1/2 my thyroid

>taken out a year ago last November. Prior to that, I still had energy

>galore. I have blamed my lack of energy on everything, the surgery, the

>anesthesia, my reduction of exercising twice a day (prior to surgery I

>started my day at the gym, then after work, ended my day there too.), my

>thyroid being out of whack (which it isn't), I've run out of things to

>blame.

Well I'm kind of a laid back (lazy?) person anyway so I don't really know

if it had been building up all along. I do know that a couple months

before everything " hit the fan " I was looking forward to a week vacation

that was coming up because I would have a lot of time to spend working on

the train layout. When vacation finally came, I didn't feel tired but I

just couldn't seem to get into it. Thought it was just a head thing but it

was probably the RA. I had been experiencing out of the blue severe joint

pains now and then which would disappear over night. They would usually

show up after I had spent a day of working in the basement so I thought I

was just out of shape and had overdid it.. At the time I had a pretty

sedentary, office type job. I also had problems for a couple of months

with the balls of my feet hurting and my right foot even had a little bit

of swelling. I actually went to see two different podiatrists and one of

them took x-rays but couldn't really explain what was going on other that I

a toenail fungus on one nail. The nail was distorted and I thought maybe

it was ingrown and causing an infection or something.

>Maybe it is what it is. An immune system working overtime and a stubborn

>person trying to ignore her frailities.

I this that is probably all it is, too.

>What kind of work did you do before you had to stop? It's wonderful that

>you are feeling so well. I've got my fingers crossed for you. I like being

>out in the workforce, I hope I can find a way to stay there for the next 10

>years. I had tentatively planned to file for soc. sec. retirement at 62, go

>into the City's DROP program and work or not, depending on my health for up

>to another 5 years.

I had been working at a small TV station for 6 1/2 years and learned how to

do all kinds of neat things. There was a buy out and my job was

eliminated. The whole deal was hokey and is the stuff of another

story. The RA hit big time about a month after I lost my job. It got so

bad that I finally stopped going to apply for work and collecting

unemployment. A actually don't like being out in the work force, never

seemed to quite fit in or " make it " . I have been beating my head against

the wall because of this for the past 30 years and the few times things

looked like they might be finally coming around, the bottom fell out and I

would end up back in the S#@T again. My plan was, when I found another job

after losing the one at the TV station, was to forget about " making it " and

just start salting away as much as I could for retirement. Luckily, my

wife Celine " found herself " about 10 years or so ago, hit her stride, and

has been able to make a very nice living in sales. I still felt guilty,

though, because I wasn't contributing to the family due to not being able

to work, at least not at a " real " job because of the RA. At least if I can

get disability I'll be able to pitch financially in and get paid to stay

home and play with trains! --

Kossart - RA, Type-2 Diabetes

Peru, Il, USA

[Please refrain from sending any unsolicited attachments, pictures or

forwards - Thanks!]

February 10, 2002

Good hearing from you !

> They put me on the high dose of Prednisone when they admitted me to the

> hospital because I had fluid around my heart (pericarditis).

Is this still an issue? Sounds like you have been through the mill. So many

side issues can certainly be discouraging...

> At the time this happened I had been in REALLY bad shape for about three >

months and hadn't yet been diagnosed with RA.

This is beginning to sound like a recurrent theme: finding a physician who

will listen, spend time with the patient, and come up with a diagnosis!!

RA is like dancing with the devil; I wonder why it is that the medical

profession is having such a hard time diagnosing something that seems to be

rather prevalent!!?

I'm somewhat angry that it took 2 years for someone to listen to me and

respond with a rheumatology referral. I can't help but wonder whether I

would have arthritis in so many joints if I had received proper care

earlier. I knew there was something *really* wrong with me, and it was

really scaring me, but convincing my primary care physician has been a

challenge. I must say she was actually *almost* apologetic at our last

appointment. But the recurrent thread of our conversation was, do you know

how rare your symptoms are, we did all the right tests, there wasn't any way

to come up with an RA diagnosis based on the results of your tests, yadda,

yadda, yadda.

I do not have a positive RF factor (did I say that right?). I'm told that 20

per cent of RA patients do not test positively. The x-ray of my left hand,

which is the only part of me that shows significant swelling, came back

negative. The swelling is so obvious, I was quite disgusted by the blind

medical belief that if my hand is swollen, but x-rays come back normal,

there must be no problem!

When I went to my first appointment with the rheumatologist, he took the

x-ray I had brought with me and popped it into one of those lighted boxes

where you can look at it. The x-ray was so crummy, you couldn't really see

anything in the joint areas, it was just a blurry gray color. I can only

imagine what he was thinking: the first thing he did was send me downstairs,

(his office is in a medical center) and have a series of additional x-rays,

*both* hands, this time, so a comparison could be made.

This is the same lab where I have had a number of ultrasounds and yearly

mammograms. I'm wondering how accurate *anything* they do is...

> I don't exercise though I know I should. I actually have a membership at

> the YMCA but have only been in the place once just to check it out. My

> docs are after me to at least walk everyday and I know I should but

haven't

> figured out how or when to fit it into my routine. I have read that

> exercising, in moderation and when you are able with RA is important

> because the strengthening of the muscles will help support the joints when

> they act up and bother your.

>I know one thing that is supposed to be good for us is to do the water

>exercises. Back when I was first diagnosed, the rheumatologist asked me if

>there were any classes like this in my area. I told him that,

coincidentally, I >had just recently seen an article about it in our local

paper. He suggested I >sign up. I told him there was also a picture with

the article and it was a bunch >of white haired old ladies. His response

was, " Well then you should be very

> popular! "

I entered the exercise area through the back door, so to speak. I've been a

member of the gym for going on 2 years. In the beginning, I joined for the

hot tub. My sister had just purchased one, (she lives in Mass.) and while I

was visiting her in May, I tried it out, and found it gave me *enormous*

relief from pain and stiffness, I was taking Vioxx then, I think, or at

least Tylenol Arthritis, and with both modalities, I could go for hours and

feel almost normal! When I returned home, I called every gym in town

looking for a hot tub. There were only 2, luckily, one of them is a quarter

of a mile away from my house :-)

After a number of months, I thought, it's really silly to come here

everyday, sometimes twice a day, and not try some of the equipment... So I

began walking on the treadmill. Five minutes at first, not going very fast

(think I started at 1.5 or 1.7 miles per hour), slowly working my way up. I

leveled out at about 30 to 40 minutes a day, at just under 3 miles per hour.

My knees just wouldn't let me go any faster. Much later I branched out and

split my exercise routine between the treadmill and the stationary bike. I

somewhere along the line added in the heated pool. Some months ago, my

shoulders had become so painful (they both felt like they were broken most

of the time), that I gave up the treadmill and bike, and changed my routine

to exercise in the pool for 30 to 40 minutes and then soak in the hot tub

for 10 minutes. I have to go to the gym way too early to be able to

participate in any of the pool exercise classes, so I have made up my own...

:-)

You might be right, if you worked going to the Y into your schedule, you

might be surrounded by little old white haired ladies. And your doctor is

right, you would be a hit! I've rearranged my whole life to fit the gym in,

I even spearheaded a letter writing campaign last year, requesting that they

change their opening time from 6:30 am to 6:00 am, so I could get a full

hour of exercising in before I had to get ready to go to work! Management

was kind enough to alter the hours, after taking a poll of the other

members.

I've made some wonderful friends, and surrounded myself with a terrific

support system. We very much enjoy the male members that venture into the

pool, hot tub area. If you are afraid of what people might think of you in

a bathing suit if you are not in perfect shape, well, I felt that way at

first. But I was so desperate for relief I swallowed my pride and went

anyway. Y'know what I found out, everyone at the gym has the same fears and

insecurities that I have, and there is such a warm feeling of fellowship,

because we are all there to improve ourselves. You may find, like I have,

that the gym I attend, because it has the pool, hot tub, sauna and steam

room, attracts many members who have painful joint illnesses and need the

water for therapeutic relief. What I'm trying to say, in a whole lotta

words, is try to make time, it can only help!

> making hay while the sun shines, as they say, and trying to get my

> basement remodeled so I can build my big model railroad set up which is

my

> hobby and passion.

> When all of this started, a friend of mine in the hobby confided that he

> has, I think he said, OA, and takes 4 mg. of Prednisone for the last

couple

> years.

I didn't think doctors prescribed Prednisone for that continuous time

length, due to all the " bad " side effects. Interesting... When I first

started the Prednisone and had such dramatic improvement, I called the

doctor's office and asked if I could " forget " the methotrexate and just stay

on the prednisone. The answer was an emphatic NO! That the goal was to get

me off the prednisone as soon as was practical.

> Anyway, I told him maybe I should wait and see how I end up with

> the RA before I start building the train tables. Or that maybe I should

> build it at wheel chair height instead of at the normal standing height,

or

> that maybe . . . His response was that maybe I should just BUILD IT and

> plan for the positive rather than the negative. I still wonder sometimes

> if I am doing the right/best thing but at least I am doing it.

Listen to your friend!! Having a passion is a very positive emotion. And

why plan for the worst, when it may not come to pass. Sounds like you're

having fun.

> I was surprised to recently read

> somewhere that diabetes is considered an immune disease type thing, too.

I haven't heard this, although it wouldn't surprise me. I suspect, that

somewhere down the road, we are all going to learn that stress plays a big

part in autoimmune diseases.

> When vacation finally came, I didn't feel tired but I

> just couldn't seem to get into it. Thought it was just a head thing but

it

> was probably the RA.

Probably so. Although in my case, I can't seem to get into housework, such

as vacuuming, reorganizing, throwing stuff out... I say this with tongue in

cheek, because although it is somewhat true, when you are in pain, can't

lift things cause your wrists and hands hurt, and can't bend or stoop

because of your knees and hips, major housecleaning efforts don't seem

possible, nevermind appealing...

> I had been experiencing out of the blue severe joint

> pains now and then which would disappear over night. They would usually

> show up after I had spent a day of working in the basement so I thought I

> was just out of shape and had overdid it.. At the time I had a pretty

> sedentary, office type job. I also had problems for a couple of months

> with the balls of my feet hurting and my right foot even had a little bit

> of swelling. I actually went to see two different podiatrists and one of

> them took x-rays but couldn't really explain what was going

Funny, I wrote a multipage narrative of my battle with pain and took it to

my first appointment with my rheumatologist. No doubt he thought I was

cracked, but so many " little " things, like you mention, occurred over a

period of 2 years, and finally became a " big " thing. It's hard to see the

big picture when you are in the middle of it. And like you, I started with

other types of specialists, looking for answers. I went to an orthopedic, to

start, who treated me for carpal tunnel and prescribed Vioxx for my

stiffness. I started seeing my current internist about 6 months later and

she took over my care. All this time, I was told I must have " arthritis " ,

and if I would just lose weight I would feel better.

> I had been working at a small TV station for 6 1/2 years and learned how

to

> do all kinds of neat things.

What kind of neat stuff did you do? You don't want to stay in a similar

field, if you could go back to work?

> My plan was, when I found another job after losing the one at the TV

station, > was to forget about " making it " and just start salting away as

much as I could > for retirement.

Nothing wrong with this plan, sounds like my plan! I was 40 before I

realized that if anyone was going to worry about retirement, it was going to

have to be me. I've been with a municipality ever since, good benefits and

a retirement plan. And I really like the work.

Keep up a positive attitude , things have a way of working out. Have fun

with the trains!

Suzanne

February 12, 2002

At 07:37 AM 2/11/02, Suzanne wrote:

>Good hearing from you !

>

> > They put me on the high dose of Prednisone when they admitted me to the

> > hospital because I had fluid around my heart (pericarditis).

>

>Is this still an issue? Sounds like you have been through the mill. So many

>side issues can certainly be discouraging...

Nope. Any sign of the problem is long gone and the doc is unable to

detect. We did an echocardiogram a few months back to confirm and the

cardiologist agreed. My fear is that some day when I get a flare, the

Methotrexate quits working, etc., it will return.

> > At the time this happened I had been in REALLY bad shape for about three >

>months and hadn't yet been diagnosed with RA.

>

>This is beginning to sound like a recurrent theme: finding a physician who

>will listen, spend time with the patient, and come up with a diagnosis!!

The problem wasn't with the physician's not trying. He could see the

swelling and my lack of movement. He took I don't know how many ounces of

fluid from my right knee and I didn't even think it was swollen. He sent

me for all kinds of tests and suggested my symptoms indicate some type of

polyarthritis but I didn't, and still don't, have the classic symptom:

Sever stiffness on awakening in the morning lasting a couple hours. My

rheumatologist doesn't believe me when I say I don't have it and told my

wife I was just being macho. My GP also initially tried me on a medication

called Arthrotec and after taking the entire bottle, it didn't touch it. I

had heard some good things about Vioxx and when I suggested trying it his

response was that the Arthrotec was stronger. We then tried Celebrex and

it worked wonders for a week or so, then everything came back. I had been

doing some research of my own on the web and I suggested to him Lupus. He

didn't think so but took another listen to my chest and that's when he

heard the " rub " as he put it. That's when he sent me for the inital

echocardiogram where the pericarditis was found. In succeeding visits he

would always listen intently to my chest and say that he could still hear

it slightly. At one point I asked him why he constantly quotes Shakespeare

whenever he listened to my chest. When he asked what I meant I replied,

" Ah, there's the rub. " <groan>

>. . . What I'm trying to say, in a whole lotta words, is try to make time

>[for exercise], it can only help!

Well I know you're right, Suzanne. Both my docs are after me to at least

do some walking and to quit smoking. I need to somehow accomplish this but

the bottoms of my feet don't feel right. They were really bad before I got

effective treatment, someone on this list accurately described it as

walking barefoot on Legos. My feet don't really hurt currently, it just

feels like I am walking barefoot on concrete -- it's kind of weird feeling

but not especially painful.

> > When all of this started, a friend of mine in the hobby confided that he

> > has, I think he said, OA, and takes 4 mg. of Prednisone for the last

>couple

> > years.

>

>I didn't think doctors prescribed Prednisone for that continuous time

>length, due to all the " bad " side effects. Interesting... When I first

>started the Prednisone and had such dramatic improvement, I called the

>doctor's office and asked if I could " forget " the methotrexate and just stay

>on the prednisone. The answer was an emphatic NO! That the goal was to get

>me off the prednisone as soon as was practical.

I know. The weird part is he he goes to the same clinic as I do in

Rockford, Illinois which is in the northern part of the state. He has a

different RD then I do, though. There are something like four or five at

this one facility. Initially there was supposed to something like a five

month wait to get into see this guy but he was a friend, or something, of

my GP so the got me in ASAP. My GP said there is a shortage of

rheumatologists and I replied, " Thats because they're all up in Rockford,

they've got almost a half dozen up there! " The backlog to see someone in

Chicago was even longer so I went to Rockford. As far as the Prednisone

dose, I have heard that if you are on it long term it should be below 7 mg,

I think. and others on the list know the exact info I am referring

to, right or wrong as I may be.

>Listen to your friend!! Having a passion is a very positive emotion. And

>why plan for the worst, when it may not come to pass. Sounds like you're

>having fun.

That's the motto of the hobby, literally, " Model Railroading is Fun! "

appears on the cover of the longest running and foremost magazine on the

hobby. Lately there is a push to change it to " World's Greatest Hobby " but

your point is well taken.

> I suspect, that

>somewhere down the road, we are all going to learn that stress plays a big

>part in autoimmune diseases.

I agree. In fact, just a few weeks ago at my latest RD visit I asked if

stress could cause a flare and the answer was, " Definitely " . A week or so

prior to the visit my left hand got more swollen and tighter than usual and

I woke up in the middle of the night wit pain shooting from my knuckes down

into two of my fingers. I hadn't felt stuff like that in a very LONG

time. I had some stressful things going on prior to that event -- Celine

had quit her job which meant we lost our health insurance, we found out our

younger daughter had cut school AGAIN and had snuck out of the house AND

" stolen " Celine's car out of the garage one night, etc., etc.,. When I

thought about it there were something like six major things going on all at

once! Now that's stress.

> > When vacation finally came, I didn't feel tired but I

> > just couldn't seem to get into it. Thought it was just a head thing but

>it

> > was probably the RA.

>

>Probably so. Although in my case, I can't seem to get into housework . . .

I know what you're saying but this was something enjoyable and that I was

looking forward to. It's not that I couldn't get started, I just didn't

feel like doing anything.

> I also had problems for a couple of months

> > with the balls of my feet hurting and my right foot even had a little bit

> > of swelling. I actually went to see two different podiatrists and one of

> > them took x-rays but couldn't really explain what was going on.

In the course of my " research " on the internet I came across ONE statement

which said something about pain in the balls of the feet being a possible

indication of RA. At times I am tempted to contact the two podiatrists and

give them the answer to the " clue " neither of them had.

> > I had been working at a small TV station for 6 1/2 years and learned how

>to

> > do all kinds of neat things.

>

>What kind of neat stuff did you do? You don't want to stay in a similar

>field, if you could go back to work?

Well I learned how to switch in " commercials " and local programming

seamlessly around the satellite feeds we where broadcasting locally. I got

to work with a lot of neat gadgets and learned interesting things from the

engineer and his assistant. I am a technical and gadgety type of person,

ever since I was a kid. I like to understand how things work and try to

fix them. I also like to organize things. Eight years ago I got a degree

in electronics as a technician which led the engineer at the TV station to

try and talk me into being his new assistant when his then assistant

announced his retirement. I turned it down because at that point I had a

pretty cushy job at the typewriter all day in my own , newly decorated

office with two computers and an internet connection and email. Also, they

wouldn't discuss what the job paid unless I said I was interested. I told

them I couldn't say if I was interested until they told me what the job

paid. We went around and around on this for months before they finally

hired back the guy who had originally trained me when I started years

before. I also had the most seniority by that time and had gained the

trust and respect of my superiors and so I was sitting on top of the world,

so to speak. During my time there some of the neat things I learned how to

do was how to make a TV show - At various times during my tenure I learned

and performed as camera man, floor director, audio, associate director and

director. I also used the machine that puts words on the screen (because I

was the only one who could type using all my fingers!) and learned how to

do video and audio editing. Also went on remotes occassionally which was

kind of cool at first because people kind of look at you in awe, but the

traveling, setup, and takedown got old after awhile. I realistically can't

go anywhere else and do this because the nearest TV station is 60 miles

away. Also, we were a small station and our efforts were kind of stone

age-ish compared to what they do at a " real " TV station. But it was fun

while it lasted. Also, we decided years back that we don't want to leave

the area and the house we have been in for the past four years is Celine's

dream house - finally after living in our shack " starter " home for 19

years! I also decided that I am tired of long drives to work since I

realized that I have been doing it the past 25 years. If I do go back to

work I want it to be, ideally, in town here. Especially with the RA now

which is affecting my ability to drive long distances and no way could I

change a flat tire and maybe not even be able to open the hood of the car.

> > My plan was, when I found another job after losing the one at the TV

>station, > was to forget about " making it " and just start salting away as

>much as I could > for retirement.

>

>Nothing wrong with this plan, sounds like my plan! I was 40 before I

>realized that if anyone was going to worry about retirement, it was going to

>have to be me. I've been with a municipality ever since, good benefits and

>a retirement plan. And I really like the work.

Glad to hear it. Unfortunately I have nothing, nada, zip. Back in 1980 I

got into the stock purchase plan and divident reinvestment available at my

job at Ralston Purina. I kept it up ever since and it was supposed to be

the start of my retirement nest egg. After a few years I realized that I

had nothing for my kids college education if they chose to go someday. I

then split the stock and gave each one half as their college money. I have

one daughter who is finishing up college now and another who will be

starting in the fall - tentatively as this is the one who doesn't seem to

have her acto together at the moment, hopefully, temporarily. So right

now, being unemployed and all with no real prospects realistically

available as far as I can see, I have zero towards retirement. Celine has

a good retirement program at her job which she has aggressively been

donating to so at least she should be OK.

>Keep up a positive attitude , things have a way of working out. Have fun

>with the trains!

Thanks! Will try and do just that.

Kossart - RA, Type-2 Diabetes

Peru, Il, USA

August 12, 2002

Hello Devaughan, Welcome and it is nice to meet you.

You will find a group of wonderful, caring folks on

this site. Not only can they help with questions

concerning our disease but they provide medicine for

the spirit! We learn a lot and have a lot of fun all

the while. I am 47 and not sure of what I have. It

all started when I was 15. I've been diagnosed with

osteo, FM, Sponydolsis, Carpal Tunnel and Thoracic

Outlet. I am of the belief that even though the

antibody test was negative, that I have RA. I think it

doesn't much matter which ones I have because the pain

is all the same. I see a new rheumy this week and I

hope we can come to some conclusions.

Just chime in on any issue, it usually interests

someone. Take care. Iris

__________________________________________________

October 10, 2002

<PRE>lynn, it's good to see you post again. sorry you didn't get the treatment

you

deserved. good thing you had your wits about you to catch their mistake,

please keep voicing your opinion and be heard. just don't overdo it. kathy in

il

October 12, 2002

Lynn,

I¹m sorry this was such a difficult surgery. What makes it harder than the

first time? Are you in more pain?

Thank God you knew well enough NOT to take more than one of the pills.

Medication errors in the hospital are much to frequent. I am appalled that

the nurse questioned your knowledge of a medication you take ever day and

more appalled that she wouldn¹t herself question taking 10 synthroid

pills!!! She should have immediately double checked the order and not try

to get you to take it! I hope she is reprimanded.

Even in the best of hospitals, medication errors are a problem.

I don¹t blame you for not wanting to return, but I hope you never need to.

a

> First I wanted to thank everyone for all their messages. A special

> thank you to a and for their phone calls. I am just kind of

> resting. Having a hard time with steps and stuff. Plus I want to get

> up and go and I can't. This is certainly more than I ever thought it

> would be. I do want to tell you that before I left the hospital last

> Thursday there was a big problem. Thank God I have such a big mouth. I

> take synthroid, and they came in with 10 pills, which was ten times my

> dose. I refused to take it and they tried to tell me I had to. At the

> U. of P. the interns write the prescriptions. I told them I was taking

> one pill and one pill only. Tried to tell me, I had to take it. I ask

> them what part of I'm not taking that medicine don't you understand.

> Ten minutes later they came in and told me, a mistake had occurred and

> the prescription was written wrong. All this followed by the intern. I

> raised a major complaint because if I wasn't on top of what I take, I

> would have been in very serious trouble. Today, I called the hospital

> and raised another complaint and told them I want something done about

> this. If I had done what they wanted I would not be here today. I know

> they won't do anything about it, but I plan to raise the issue again and

> again. I told them that I would not come back to that hospital. I felt

> this mistake plus the lack of care after intensive care is enough for

> me.

> I am thinking of all of you.

> Lynn (MeMom)

>

October 13, 2002

Hi a,

What makes it harder is difficult to say. I am just so tired, I want to do

things and I don't seem to be able. I know I said I would take the recovery

slow

but I think I was hoping for more. I am not in the pain I was in and there is

no

bile taste in my mouth. So these are really good things. I am suppose to see

the

surgeon this week but they have no appointments. So I am not sure what is going

to

happen. Wish I could go for a walk, but I know I can't right now. Maybe it is

having two surgeries back to back. Anyway, I hope thinks are good for you, and

you

are feeling okay.

Lynn

a wrote:

> Lynn,

> I¹m sorry this was such a difficult surgery. What makes it harder than the

> first time? Are you in more pain?

> Thank God you knew well enough NOT to take more than one of the pills.

> Medication errors in the hospital are much to frequent. I am appalled that

> the nurse questioned your knowledge of a medication you take ever day and

> more appalled that she wouldn¹t herself question taking 10 synthroid

> pills!!! She should have immediately double checked the order and not try

> to get you to take it! I hope she is reprimanded.

> Even in the best of hospitals, medication errors are a problem.

> I don¹t blame you for not wanting to return, but I hope you never need to.

> a

>

> > First I wanted to thank everyone for all their messages. A special

> > thank you to a and for their phone calls. I am just kind of

> > resting. Having a hard time with steps and stuff. Plus I want to get

> > up and go and I can't. This is certainly more than I ever thought it

> > would be. I do want to tell you that before I left the hospital last

> > Thursday there was a big problem. Thank God I have such a big mouth. I

> > take synthroid, and they came in with 10 pills, which was ten times my

> > dose. I refused to take it and they tried to tell me I had to. At the

> > U. of P. the interns write the prescriptions. I told them I was taking

> > one pill and one pill only. Tried to tell me, I had to take it. I ask

> > them what part of I'm not taking that medicine don't you understand.

> > Ten minutes later they came in and told me, a mistake had occurred and

> > the prescription was written wrong. All this followed by the intern. I

> > raised a major complaint because if I wasn't on top of what I take, I

> > would have been in very serious trouble. Today, I called the hospital

> > and raised another complaint and told them I want something done about

> > this. If I had done what they wanted I would not be here today. I know

> > they won't do anything about it, but I plan to raise the issue again and

> > again. I told them that I would not come back to that hospital. I felt

> > this mistake plus the lack of care after intensive care is enough for

> > me.

> > I am thinking of all of you.

> > Lynn (MeMom)

> >

January 25, 2003

Hi Bonnie...I'm Tess from NW Oregon, USA. Welcome! The folks here are

lovely understanding souls, and great educators. Please feel free to

address any subject, or just vent your feelings. When things are

'heavy' in your life this is a soft place to 'fall'.

Much Love...

Tess

January 25, 2003

Hi Bonnie, and welcome! Are you recently diagnosed, or have you been

trying to cope with RA for awhile now, and just aren't getting help and

support? Either way, it's a tough disease to have but it's a little

easier when you have friends to help you along the way. Hopefully we

will be able to serve that purpose for you.

My name is Carol. I'm 37, married, and live in Florida. I was

diagnosed with RA a year ago, but had symptoms for years before. I'm on

Remicade, Methotrexate and Plaquenil - among other things. I still

don't feel like my RA is well under control, but we're working toward

that goal.

This is a great group of friends and a and , our moderators,

keep us abreast of all the most recent research and discoveries. We'd

love to hear more about you when you feel comfortable.

Hugs,

Carol

[ ] Hello

I'm new here, hello. I came because I have RA but feel lost. My

medical support is overstretched and unhelpful. I don't know what to

expect. I have lots of questions but can't find anybody who will

listen to them, let alone try to answer them. So, here I am. My name

is Bonnie.

January 25, 2003

Hi Bonnie. Sorry for the reason you found us but glad to have you aboard.

I¹m 48, married and live in NJ. I¹ve had RA since my early 20¹s and have

been through the gamut of RA meds. My current cocktail is Enbrel & Mtx and

Ultracet for pain. Most of the time it helps, but with this cold spell

we¹ve been having, it leaves a lot to be desired. Feel free to ask any

questions. We have a very large group of knowledgeable people that will try

to answer your questions. We¹ll also send you to the websites that offer

information to answer your questions. It can be quite scary when you¹re new

to this disease. At the bottom of each email is a link to my website which

contains links to some of the best information on the web.

http://rheumatoid.arthritis.freehosting.net/

a

> I'm new here, hello. I came because I have RA but feel lost. My medical

> support is overstretched and unhelpful. I don't know what to expect. I have

> lots of questions but can't find anybody who will listen to them, let alone

> try to answer them. So, here I am. My name is Bonnie.

>

January 25, 2003

Welcome, Bonnie!

Sorry there is so much uncertainty in your life right now. We will

listen and try to help you.

[ ] Hello

> I'm new here, hello. I came because I have RA but feel lost. My

> medical support is overstretched and unhelpful. I don't know what to

> expect. I have lots of questions but can't find anybody who will

> listen to them, let alone try to answer them. So, here I am. My name

> is Bonnie.

January 26, 2003

Hi Bonnie,

What are your questions?

Suzanne

[ ] Hello

> I'm new here, hello. I came because I have RA but feel lost. My

> medical support is overstretched and unhelpful. I don't know what to

> expect. I have lots of questions but can't find anybody who will

> listen to them, let alone try to answer them. So, here I am. My name

> is Bonnie.

January 26, 2003

<PRE>hi bonnie. you have definatly come to the right olace. people here are very

caring, understanding and even if not arthritis related they are here for

you. welcome and i sorry you had to find us here. kathy in il

January 26, 2003

Hello, Suzanne.

What are my questions? They are: what can I expect from the disease

process? How long will I be able to remain functional? What can I

expect from the drug therapies? How can a DMARD be quantitatively

assessed for effect during simultaneous steroid therapy? How can I

develop coping strategies?

Thanks for replying. I'm new to the Internet and am still having

problems with protocol. Please advise me of any errors I make. Hope

this message finds you as well as you can be. 'Bye for now. Bonnie.

>

January 28, 2003

Bonnie,

You ask hard questions! I think you will find everyone on this list is

asking the same questions themselves. The answers will vary from " who

knows " to " t depends! "

> What are my questions? They are: what can I expect from the disease

> process? How long will I be able to remain functional? What can I

> expect from the drug therapies? How can a DMARD be quantitatively

> assessed for effect during simultaneous steroid therapy? How can I

> develop coping strategies?

What is your diagnosis? How long have you been having difficulties? What

kind of difficulties are you having. What kind of doctors are you seeing?

What drugs, if any, have you tried, are you on? Do you work?

The disease process appears to be different for everyone. How long will you

remain functional? Who knows? That seems to vary also.

Coping strategies? Stay right here. Lots of good information and support.

Suzanne

February 7, 2003

Hi

My son also preferred laying and looking to one side over the other although it sounds like the cause is different, do not overlook tortocollis as a cause of the bias. Cranial Tech websight might be helpful for you.

Jim and baby greg

seattle

February 7, 2003

Hi ,

Welcome to the group and congrats on new baby boy Ben! We also had a vaccuum sore (it was a large pop that I was not happy about either- but he was severely stuck and at the point of no return). I felt bad too because we didn't see it right away, and of course people holding him didn't understand why he would cry, then we found the spot! This was not his main problem for getting flat though, he developed torticollis inutero (tight neck muscle). Does your son have full rotation, left and right (does he lay on your chest and lay his head flat in both directions?). Sounds very plausible that he was in pain and avoided that side of his head, causing the flatness on the opposite side. Do you think this constant favoring may have tightened or stiffened up the muscle on the opposite side from less use? Now that the sore is healed, he may now have a preference that is working against him. In any case, do your best to reposition as much as possible, there have been success stories from repositioning alone, and the less time spent overrall on the back of the head, the better. Encourage tummy time, make it fun by putting colorful things close by, or put him on the bed while you look at him from below. Your Doctor sounds very knowledgeable and helpful regarding treating plagio, so at least your on the right track with a good medical professional on your side. Check the progress of your repo efforts with a weekly pic, wet hair, from the top (with a small baby you can lay them down and do this). We also found that putting our fingers just barely in the ears and looking from above will let you know if the ears are lined up or not. Good luck and keep on top of repositioning now as much as possible! Please keep us posted and feel free to ask all the questions you can think of!

' Mom

February 7, 2003

In a message dated 2/7/2003 2:39:03 PM Eastern Standard Time, meggiechristine@... writes:

He is not in physical therapy as of right now. I think the doctor

wants to wait till the 4 month appt. to see where we stand. He

mentioned doing x-rays and things like that...is that normal?

Also...thank's to everyone for all the welcome's!!

Meg-

In most cases, Doctors are advising to get an MRI or x-ray/ cscan to rule out anything other than muscular torticollis- tort can also be caused by abnormal fusion of the spine, even hip displasia and eye problems, but in most cases, its a muscle shortening or tightening problem that can/does develop inutero from being stuck in one position, or even after birth by being placed on one side too long. Our son had an MRI at 2 months old to rule out any abnormal bony fusion, and was on his way to pt by 3 months. Your son is at a great young age and for treatment and correction. I know you must be feeling overwhelmed right now, I know I did, take a deep breath and now that its not as bad as it may sound right now, and with pt and repositioning efforts, your son will be fine. Our repo efforts did fail, I will tell you that repositioning a child with tort is near impossible, most do not have the slack of the muscle to allow that head to stay in the "straight" or repo side. Keep at it. The more you do, will help. Even if you feel your not getting anywhere with it, every little bit helps. At 4 mnths, we also decided on a DOC band, it was the best decision for us and let us concentrate on the tort while the band worked its magic. Please keep us posted and if I can help you in anyway with tips, please let me know. Also check out www.torticolliskids for great advice from parents dealing with tort as well. Good luck!

' Mom

February 7, 2003

,

Ask right away. This is not to alarm you, but just to say that you already note that there is some stiffening going on, and mother knows best, so go with it. Hindsight is 20/20, and just getting into the folds of my son's neck was hard, only on the left because he was tight, and I wish I had picked up on it then. Still, we were lucky, he was dx by 2 mnths- some do not get that dx until10 or 11 mnths old. The earlier you work on the posture, the better. This can also cause plagio, upper scoliosis (the brain stem is protected by the spine, and if the head wants to be crooked, the body will follow in simple way to put it). Not all tort kids deal with the same cirumstances, so what may be happening to some (delays in motor skills, upper torso shift, etc.) may not happen for all. It is very treatable, physical therapy is usually very successful in resolving torticollis, it will be something that you will have to do on a daily basis (but for a small window of time in most cases). Surgery is a very last, last resort, and only for those that do not respond to pt- very rare. Good luck, call your ped, get that dx, ask for the x-ray, mri, whatever he wants to get rolling, and from there he can confirm muscular tort, and start you working on pt. I would still try to correct as much through repo in the meantime and by placing items of interest to the tight side and make him work to look in that direction. Good luck!

' Mom

February 7, 2003

Hi & welcome to our group!!

Glad you have found us. It is so nice to hear of both your

pediatrician and your plastic surgeon being so alert to Ben's plagio.,

that doesn't happen very often!

It sounds like the plastic surgeon gave you great advice by

recommending you attempt repositioning Ben for 2 more mos. in hopes it

will correct some of his flatness. If it has not, 4 mos is a great

younger age to begin " helmet therapy " for little Ben. He'll be

hitting many growth spurts and would get excellent & fast correction.

Hopefully, you will avoid needing a helmet w/repositioning your little

guy. My daughter also found ways to wiggle back to her flat side of

her head, very frustrating! Check out www.plagiocephaly.org/support

then " repositioning " for some helpful tips.

What a great Thanksgiving gift huh???

Welcome again, please keep us posted.

Debbie Abby's mom DOCGrad

MI

> Hi everyone. I just wanted to say hello and tell everyone a little

> bit about us. I am Meg, 21 years old. My husband, Chad, is also 21.

> We live in Missouri, about an hour from St. Louis. We just had a baby

> boy, Ben, on thanksgiving day. He is now 2 months old. My O.B. had to

> use the vacuum to get him out, and while the vacuum was being used it

> popped off Ben's head and left a huge sore on his head (the sore has

> healed, but there is still a scar). Ever since he came home from the

> hospital he WILL NOT lay on that side of his head. Obviously because

> it was painful at one time. We have tried positioning him on his

> other side, but he manages to wriggle out of it. At Ben's 2 month

> check up his Ped. was concerned about his head becoming flat on the

> opposite side. He suggested we see a plastic surgeon, which we did.

> The plastic surgeon said if his head does not look better by age 4

> months we will need to go ahead with the helmet. We asked what we

> could do to help it get better and the plastic surgeon said to

> position him on the other side, but most likley it is too far to

> correct itself. We have been trying to position him on his other side

> in hopes that it will correct itself. I am really worried. I have

> searched the internet to try and find out more about plagiocephaly. I

> am just curious if anyone else had a situation like mine. Any info is

> greatly appreciated. I am so happy I found this group.

>

> Thanks

>

February 7, 2003

, Welcome! We live in SW Missouri, south of Springfield, near Branson. You are certainly doing the right thing in researching all you can. 2 months is a great age for repositioning, if you can get it to work for you. Did you get a DX of torticollis? My youngest son, Lucas, was dx at 6mths. I know has LOTS of experience (as do some other members on the list) in that area and can give advice on holding and how to lay them etc...

in SW MissouriCaleb 2 1/2 and Lucas 12 months (starbanded 1st time 8/26/2 and banded 2nd time on 12/12/2)

Hello

Hi everyone. I just wanted to say hello and tell everyone a little bit about us. I am Meg, 21 years old. My husband, Chad, is also 21. We live in Missouri, about an hour from St. Louis. We just had a baby boy, Ben, on thanksgiving day. He is now 2 months old. My O.B. had to use the vacuum to get him out, and while the vacuum was being used it popped off Ben's head and left a huge sore on his head (the sore has healed, but there is still a scar). Ever since he came home from the hospital he WILL NOT lay on that side of his head. Obviously because it was painful at one time. We have tried positioning him on his other side, but he manages to wriggle out of it. At Ben's 2 month check up his Ped. was concerned about his head becoming flat on the opposite side. He suggested we see a plastic surgeon, which we did. The plastic surgeon said if his head does not look better by age 4 months we will need to go ahead with the helmet. We asked what we could do to help it get better and the plastic surgeon said to position him on the other side, but most likley it is too far to correct itself. We have been trying to position him on his other side in hopes that it will correct itself. I am really worried. I have searched the internet to try and find out more about plagiocephaly. I am just curious if anyone else had a situation like mine. Any info is greatly appreciated. I am so happy I found this group. ThanksFor more plagio info

February 7, 2003

Meg-

Welcome to the group and congrats on the birth of your baby!

You can get some great repositioning ideas at

http://www.plagiocephaly.org/support/repotech.htm

Sounds like your son may have torticollis (tight neck muscle) from

the vacuum. Is he is Physical Therapy? My son had tort and it does

make repositioning challenging.

The good news is that it seems that you have great doctors. Ben is

at a great age for correction.

Keep us posted!

Dane's mom DOC Grad

> Hi everyone. I just wanted to say hello and tell everyone a little

> bit about us. I am Meg, 21 years old. My husband, Chad, is also

21.

> We live in Missouri, about an hour from St. Louis. We just had a

baby

> boy, Ben, on thanksgiving day. He is now 2 months old. My O.B. had

to

> use the vacuum to get him out, and while the vacuum was being used

it

> popped off Ben's head and left a huge sore on his head (the sore

has

> healed, but there is still a scar). Ever since he came home from

the

> hospital he WILL NOT lay on that side of his head. Obviously

because

> it was painful at one time. We have tried positioning him on his

> other side, but he manages to wriggle out of it. At Ben's 2 month

> check up his Ped. was concerned about his head becoming flat on

the

> opposite side. He suggested we see a plastic surgeon, which we

did.

> The plastic surgeon said if his head does not look better by age 4

> months we will need to go ahead with the helmet. We asked what we

> could do to help it get better and the plastic surgeon said to

> position him on the other side, but most likley it is too far to

> correct itself. We have been trying to position him on his other

side

> in hopes that it will correct itself. I am really worried. I have

> searched the internet to try and find out more about

plagiocephaly. I

> am just curious if anyone else had a situation like mine. Any info

is

> greatly appreciated. I am so happy I found this group.

>

> Thanks

>

February 7, 2003

He is not in physical therapy as of right now. I think the doctor

wants to wait till the 4 month appt. to see where we stand. He

mentioned doing x-rays and things like that...is that normal?

Also...thank's to everyone for all the welcome's!!

> Meg-

> Welcome to the group and congrats on the birth of your baby!

> You can get some great repositioning ideas at

> http://www.plagiocephaly.org/support/repotech.htm

> Sounds like your son may have torticollis (tight neck muscle) from

> the vacuum. Is he is Physical Therapy? My son had tort and it

does

> make repositioning challenging.

> The good news is that it seems that you have great doctors. Ben is

> at a great age for correction.

> Keep us posted!

>

> Dane's mom DOC Grad

>

February 7, 2003

Hi ,

Welcome to the group! Sorry to hear about your son. Your son is at a

great age to get really good results from repositioning. Does your

son have torticollis? It's a tight muscle in the neck. You can check

that out here:

http://www.drhull.com/EncyMaster/T/torticollis.html

http://www.pedisurg.com/PtEduc/Torticollis.htm

Torticollis could be why he won't turn to that side. It took me 4

months and 3 different doctors to get my daughter's tort diagnosed.

Plagiocephaly can be caused by torticollis.

Here are some really good links on repositioning:

http://www.cappskids.org/CAPPSRepositioning.htm

http://www.geocities.com/alittleone2000/plagiopage.htm

http://www.plagiocephaly.org/support/repotech.htm

Please keep us posted on Ben.