I'm baaaaaaack!!!

October 26, 2002

Hello, everyone. I made it back from Montreal, safe and sound, last

night around 6:00pm. Our flight was delayed an hour, but otherwise,

they were both good flights. We didn't crash and that's the main

thing. LOL. Well, I think my visit to the specialist went pretty

good. I'll know more in another week or so, when I get a copy of the

letter that she dictated to her secretary. I'm not sure if it's going

to be a letter to CPP or my GP, but either way, it's going to stress

what she observed and that my disease is indeed severe and prolonged.

That was the main thing that I needed it to say. She said she would

have a problem saying it was " permanent " and I'm really not sure what

she meant by that. Whether she meant the pain or the disease itself,

I'm not sure, but PM is a chronic disease, which means permanent in my

book. We did alot of walking around the city the day before and that

morning, so went I went in there, I was barely moving. She had to stop

and wait for me a few times. She had me go through my entire medical

history (especially since the blood clots last Nov.) and when I told her

I was going to see a Hemotologist in Nov., she said she wants a copy of

his reports. She wants to find the source of where my pain is coming

from; whether it's the PM, or the SS and she also suspects MCTD.

Sooooo, she wants to do 2 days worth of tests, which include: another

biopsy (said my last one wasn't satisfactory), and MRI on both my

muscles and my brain, several blood tests, probably another EMG

(noooo!!). She said I'd have to be admitted into their hospital, since

I'm on Coumadin. Before the biopsy, I'll have to be switched to Heparin

and the Heparin stopped about 6 hrs. before. The same thing was done

when I had it done here. She's guessing it will be sometime in Dec. and

the hospital will call me immediately. Now my only hope is that the

MDA© will pay for my airfare yet again. I sure hope so, however, she

said often times when the hospital calls you and says that a bed is

open, you have to be there within 12-24 hrs. and the MDA© needs AT

LEAST 2 weeks notice. Not sure how that will work. Toward the end of

it, I was talking and talking as if my life depended on it (I wasn't

quite sure if I was going to get the kind of report that CPP needed to

approve me) and I could just tell that she wanted me to shut up and that

the appt. was officially over, but I didn't care....I just kept on

stressing facts that I wanted her to acknowledge. I'm a bit nervous

that this whole thing was for nothing, however, if worst comes to worst

and I have to wait a couple months for all these tests to be performed,

I guess that won't be the end of the world. CPP will probably want to

wait for these results anyway. ARGH!! My Aunt came in with me and when

I was getting re-dressed after my exam, she put my socks on for me and

the Dr. walked in and saw that. Little things like that, I think will

help. I also started crying when I first went in there and started

talking and so did my Aunt, and the Dr. was very understanding. She

asked why I was crying and I just told her that she had no idea how nice

it is to see someone who actually knows about PM and what it is that I

go through. She couldn't understand why I was only taking lots of

codeine for my pain, when I could be taking Neurontin (I think that's

the name) with no drug interactions with Coumadin. So, she gave me an

RX for that. We'll see how that helps. And she said most definately

start the Glucosomine (Dr. Idiot wouldn't let me). She said the

Chondotrin (sp?) wasn't really necessary but the Glucosomine was. What

does the Chondotrin (sp?) help?? She also told me to ask my GP about

getting the injection form of Methx., since I have awful side affects.

She always used Imuran as her first course of action after the Pred. but

she said there's no sense in switching me where I've responded well to

the Methx. Oh, and she also wants me OFF the Prednisone by the time I

have my muscle biopsy done, so I'm to alternate 5 mg. one day, 0 the

next, etc. and to do that for 1 mth. and then stop all together. I know

you all are thinking that's a majorly fast drop, however, the Prednisone

will affect the results of my biopsy. She also stressed the importance

of me taking off this weight that I've gained. She said 55 lbs. since

Jan. is way too much (no kidding!!) and I need this weight off. She

said I should look into hiring a Dietician (ha!!). I felt like saying,

" with what money??? " . The closest I'll get to a dietician is joining

Weight Watchers again. She said I definately could exercise since my

CPK's are normal, but I don't think she understands how my asthma plays

a role in exercising as well, and I forgot to tell her that. Oh well,

I'll try the best I can (starting Monday, of course!!) LOL. We

definately saw some interesting sights, that us country bumpkins are NOT

used to seeing. We say many homeless people, which really bothered us

(sleeping right on the sidewalk with nothing under them and it was

COLD!). We saw cross-dressers (men dressed as women). I'm sure it

wasn't anywhere nearly as busy as NYC, but it certainly felt it to us.

Everyone seemed to walk in that city and the sidewalks were so crowded

with people. And here I was holding everyone up by hobbling around on

my cane. LOL. Oh, it was quite interesting, but we're glad to be back

home. I missed you all and now I've got to catch up on 200+ emails.

Phew!!

Love ya all,

Dawn

October 26, 2002

Wow Dawn! I am SO glad you saw this doctor, she sounds to be much more on

the ball and sympathetic towards you and I know how much depends on the

letter she will be writing. I am positive she is going to help you. It was

especially good that she saw your auntie putting your socks on for you;

little things like that which she must realize you hadn't expected her to

see, can make a heap of difference. It was my second muscle biopsy that

sealed the deal for my insurance company and I hope this is the case for you

too.

I'll bet it is lovely to be home again and out of the rat-race.

Take care of yourself. I hope you are able to lose a bit of weight, if you

manage it please tell me how!!

Love from Lesley

>

>Reply-To: OurMyositis

>To: " OurMyositis " <OurMyositis >

>Subject: I'm baaaaaaack!!!

>Date: Sat, 26 Oct 2002 14:43:06 -0300

>

>Hello, everyone. I made it back from Montreal, safe and sound, last

>night around 6:00pm. Our flight was delayed an hour, but otherwise,

>they were both good flights. We didn't crash and that's the main

>thing. LOL. Well, I think my visit to the specialist went pretty

>good. I'll know more in another week or so, when I get a copy of the

>letter that she dictated to her secretary. I'm not sure if it's going

>to be a letter to CPP or my GP, but either way, it's going to stress

>what she observed and that my disease is indeed severe and prolonged.

>That was the main thing that I needed it to say. She said she would

>have a problem saying it was " permanent " and I'm really not sure what

>she meant by that. Whether she meant the pain or the disease itself,

>I'm not sure, but PM is a chronic disease, which means permanent in my

>book. We did alot of walking around the city the day before and that

>morning, so went I went in there, I was barely moving. She had to stop

>and wait for me a few times. She had me go through my entire medical

>history (especially since the blood clots last Nov.) and when I told her

>I was going to see a Hemotologist in Nov., she said she wants a copy of

>his reports. She wants to find the source of where my pain is coming

>from; whether it's the PM, or the SS and she also suspects MCTD.

>Sooooo, she wants to do 2 days worth of tests, which include: another

>biopsy (said my last one wasn't satisfactory), and MRI on both my

>muscles and my brain, several blood tests, probably another EMG

>(noooo!!). She said I'd have to be admitted into their hospital, since

>I'm on Coumadin. Before the biopsy, I'll have to be switched to Heparin

>and the Heparin stopped about 6 hrs. before. The same thing was done

>when I had it done here. She's guessing it will be sometime in Dec. and

>the hospital will call me immediately. Now my only hope is that the

>MDA© will pay for my airfare yet again. I sure hope so, however, she

>said often times when the hospital calls you and says that a bed is

>open, you have to be there within 12-24 hrs. and the MDA© needs AT

>LEAST 2 weeks notice. Not sure how that will work. Toward the end of

>it, I was talking and talking as if my life depended on it (I wasn't

>quite sure if I was going to get the kind of report that CPP needed to

>approve me) and I could just tell that she wanted me to shut up and that

>the appt. was officially over, but I didn't care....I just kept on

>stressing facts that I wanted her to acknowledge. I'm a bit nervous

>that this whole thing was for nothing, however, if worst comes to worst

>and I have to wait a couple months for all these tests to be performed,

>I guess that won't be the end of the world. CPP will probably want to

>wait for these results anyway. ARGH!! My Aunt came in with me and when

>I was getting re-dressed after my exam, she put my socks on for me and

>the Dr. walked in and saw that. Little things like that, I think will

>help. I also started crying when I first went in there and started

>talking and so did my Aunt, and the Dr. was very understanding. She

>asked why I was crying and I just told her that she had no idea how nice

>it is to see someone who actually knows about PM and what it is that I

>go through. She couldn't understand why I was only taking lots of

>codeine for my pain, when I could be taking Neurontin (I think that's

>the name) with no drug interactions with Coumadin. So, she gave me an

>RX for that. We'll see how that helps. And she said most definately

>start the Glucosomine (Dr. Idiot wouldn't let me). She said the

>Chondotrin (sp?) wasn't really necessary but the Glucosomine was. What

>does the Chondotrin (sp?) help?? She also told me to ask my GP about

>getting the injection form of Methx., since I have awful side affects.

>She always used Imuran as her first course of action after the Pred. but

>she said there's no sense in switching me where I've responded well to

>the Methx. Oh, and she also wants me OFF the Prednisone by the time I

>have my muscle biopsy done, so I'm to alternate 5 mg. one day, 0 the

>next, etc. and to do that for 1 mth. and then stop all together. I know

>you all are thinking that's a majorly fast drop, however, the Prednisone

>will affect the results of my biopsy. She also stressed the importance

>of me taking off this weight that I've gained. She said 55 lbs. since

>Jan. is way too much (no kidding!!) and I need this weight off. She

>said I should look into hiring a Dietician (ha!!). I felt like saying,

> " with what money??? " . The closest I'll get to a dietician is joining

>Weight Watchers again. She said I definately could exercise since my

>CPK's are normal, but I don't think she understands how my asthma plays

>a role in exercising as well, and I forgot to tell her that. Oh well,

>I'll try the best I can (starting Monday, of course!!) LOL. We

>definately saw some interesting sights, that us country bumpkins are NOT

>used to seeing. We say many homeless people, which really bothered us

>(sleeping right on the sidewalk with nothing under them and it was

>COLD!). We saw cross-dressers (men dressed as women). I'm sure it

>wasn't anywhere nearly as busy as NYC, but it certainly felt it to us.

>Everyone seemed to walk in that city and the sidewalks were so crowded

>with people. And here I was holding everyone up by hobbling around on

>my cane. LOL. Oh, it was quite interesting, but we're glad to be back

>home. I missed you all and now I've got to catch up on 200+ emails.

>Phew!!

>

>Love ya all,

>Dawn

>

_________________________________________________________________

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October 26, 2002

Hi Dawn!

Sounds like you had a productive visit. I hope everything works out for you. Thank you for sharing your experience and good luck with the Pred reduction!

Vickie

October 26, 2002

Hi Dawn!

Sounds like you had a productive visit. I hope everything works out for you. Thank you for sharing your experience and good luck with the Pred reduction!

Vickie

October 27, 2002

Hi, Melita. Thanks for your words or encouragement and your advice. Good

for you for losing 5 lbs.!! That's the way to get started. The specialist

seemed very adamant about me taking this weight off (and no, it's not like I

chose to gain it or gained it for no good reason!), so I guess I'll give it a

whirl. I really wish I could continue with the water aerobics classes twice

a week, but without a car, it's impossible. Oh well, someday maybe. What do

you eat for fillers? I've decided to try to eat lots and lots of veggies in

between meals, so I won't get soooo hungry. Hopefully this work.

I'm feeling soooo terrible since I've been back. I took my Methx. on Friday

night, instead of Thurs., since I had to fly home on Friday and I didn't want

to be out of commission. Well, I went to bed Friday night at 9:15, and

couldn't get up until 1:00 on Sat. I got up and had something small to eat,

then came on-line and then was back in bed by 4:00 and slept until 8:30 this

morning. I have NEVER slept so long. I am so sick feeling. I just took 2

Gravol (like Dramamine) so I wouldn't throw-up and am just barely moving. I

hope and pray the injection form of the Methx. will be the answer. Kirk took

kids to outpatients dept. at hospital (like ER), as they're both quite sick

with colds and now they're visiting his family for the day. I'm so fortunate

that I have a hubby that helps out so much.

Hope everyone is having a good Sunday.

Dawn

Melita wrote:

> Dawn

>

> I'm so glad that you made it safely and are now back.

> It also sounds like you had a good visit.

>

> I found some info for you and everyone else that I will send

> seperately.

>

> .........She couldn't understand why I was only taking lots of

> codeine for my pain, when I could be taking Neurontin (I think that's

> the name) with no drug interactions with Coumadin. So, she gave me

> an RX for that................

>

> I think that the neurontin will help with the pain. I have a co-

> worker who was taking it for back pain she had due to compressed

> discs. The good part is that is not ADDICTIVE like codeine.

>

> ......when I get a copy of the letter that she dictated to her

> secretary..........what she observed and that my disease is indeed

> severe and prolonged..............

>

> Thank goodness for that!! Finally someone who understands.

>

> ...........She said she would have a problem saying it as " permanent "

> and I'm really not sure what she meant by that.........

>

> I think that they don't say permanent ONLY because you can go into

> remission at times and therefore 'get better'. But I think as long as

> she uses the term " Chronic " you will be okay. I think

> that 'permanent' means you will never get any better than the

> original dx condition.

>

> ........I also started crying when I first went in there ........She

> asked why I was crying and I just told her that she had no idea how

> nice it is to see someone who actually knows about PM and what it is

> that I go through.....

>

> I'm glad that you were able to get the true validation from a Dr that

> you have needed. I'm also glad that you have become so very proactive

> about your health care.

>

> Remember when you were terrified to talk to the Dr's and tell them

> what was really going on? You have made such a huge jump in the right

> direction!!! I am very proud and happy for you.

>

> ....And she said most definitely start the Glucosomine (Dr. Idiot

> wouldn't let me). She said the Chondotrin (sp?) wasn't really

> necessary but the Glucosomine was. What does the Chondotrin (sp?)

> help??.........

>

> As I quote from the Web search:

>

> Glucosamine and chondroitin sulfate supplements are used to slow the

> progression of osteoarthritis — the deterioration of cartilage

> between joint bones — and reduce associated pain. They are both

> naturally occurring molecules in the body.

>

> Glucosamine is thought to promote the formation and repair of

> cartilage.

>

> Chondroitin is believed to promote water retention and elasticity in

> cartilage and inhibit enzymes that break down cartilage.

>

> .......and she also wants me OFF the Prednisone by the time I have my

> muscle biopsy done, so I'm to alternate 5 mg. one day, 0 the next,

> etc. and to do that for 1 mth. and then stop all together. I know

> > you all are thinking that's a majorly fast drop, however, the

> Prednisone will affect the results of my biopsy......

>

> Well if you are already at 5mg the alternate day switch is not that

> bad. But if you ARE NOT at 5mg now that would be a fast drop.

>

> ....She also stressed the importance of me taking off this weight

> that I've gained. She said 55 lbs. since Jan. is way too much (no

> kidding!!) and I need this weight off..........

>

> Well DUH!!!!!! It's not like you did it on purpose or anything.

>

> ....She said I should look into hiring a Dietician (ha!!)....

>

> What you could do which is similar to weight watchers is start a FOOD

> JOURNAL and try to figure out WHAT you eat, WHEN you eat it and HOW

> MUCH of it you eat. Then from there determine what you can CUT DOWN

> ON. That will help you figure out how many calories you take in daily

> and how many you should decrease in order to lose the weight.

>

> **Notice I didn't say what you could STOP eating****

>

> It will be alot of work in the beginning, but I think that is the way

> to go in the long run.

>

> BTW - I just determined that I have lost 5lbs in about a month. Which

> is how my Dr wanted me to do it. About 1lb a week.

>

> Wanna know my secret?????

>

> Filler food!!!!

>

> I still eat 3 meals a day.........but just like a kid a give myself

> snacks. I also eat when I have to not when I want to. The main thing

> is that I have figured out that if I skip a meal (thinking that it

> will help my diet) it ONLY MAKES IT WORSE!

>

> ....I'll try the best I can (starting Monday, of course!!) LOL....

>

> Start slow....take walks......and stretch.

>

> I hope this helps.

>

> Take care,

> Melita

>

October 27, 2002

Hi, Zanna. How cute!!! Little coats for the boys. I would love to see

pix of that. You don't know the meaning of slowing down, so I'm not

going to bother lecturing to you about that. LOL. Has gotten

used to them yet? I'm sure he'll come around. He's really got no

choice, does he?? Yes, I'm sure CA would definately be a culture shock

too. It's fun to see all those neat things, though. It would be about

a 10 hour bus drive to get there and I really don't think MDA© does

the bus thing. The way they pay for the flights is with their airmiles,

so I'm thinking they'll be able to fly me back out there providing they

have enough time to work with. We'll see what she has to say about it

tomorrow. Kirk's new job is going well. His 3 weeks will be up next

Friday and that's when he'll find out if he's hired on for good. I

don't have any doubts that he will be. So, your mom & dad will be there

on Wedn., right? You all must be so excited. Enjoy your visit with

them.

Hugs,

Dawn

mrsxanadu@... wrote:

> Hiya chickie!

>

> I am so glad you had a great experience. The big city can be a

> culture shock can't it?? Things are so different out here than they

> were back home! When I first moved out here and started working at

> Home Depot, a guy came in dressed in a sun dress and wig. Didn't

> bother to try to hide the fact that he was a man, still had stubble

> and a very low voice, very manly looking despite the dress and

> wig.....I couldn't help but stare. Now, it doesn't phase me

> anymore.....I have seen a lot in the years I worked there!!

>

> Anyway, I hope this doctor was helpful. How far would it be to drive

> there? How is Kirk's new job going?? Hopefully well.

>

> I would like to know how to lose weight too. I got the pictures back

> from Cheri's wedding (sorry, my scanner is not working...) and I don't

> think I have ever looked fatter. I was grossed out by myself. My

> doctor once referred me to a dietitian and I never did go. The money

> thing....I can't imagine how cheap weight waters will be either

> though. My friend Robin does weight watchers and she had lost quite a

> bit of weight, but she walks everyday and is not on pred......the

> shortness of breath is very hard to deal with some days. I did about

> 6 loads of laundry today and took the puppies out in the back yard

> several times. I can't let them out alone and won't take them out

> without a leash unless Kylie is home to chase them. I am afraid they

> will get through the back fence and I won't be able to get them. They

> are sooooo cute. I tried to scan their picture and it didn't work. I

> have to figure out what is wrong with my stupid computer.

>

> I hope you will be able to get back to that doctor again. Can she

> refer you to someone in Fredericton (I can't remember if that was

> right...)? Isn't it nice to have someone that knows what you are

> talking about???

>

> I took the boys (Lenny and Squiggy) to the vet yesterday and the

> doctor and nurses and receptionist's were all so interested in what I

> was saying. One receptionist has Rheumatoid arthritis and she is on

> Remicade and pred. She said she would be in a wheelchair if it wasn't

> for the Remicade. The other one had Lupus. She does herbal therapy.

> The boys got a good bill of health (despite the worm thing and a

> couple of fleas-which they were treated for) and got their first round

> of shots and each of them had gained an ounce since Wednesday. The

> doc said they were pure bread as close as he could tell and would

> probably be 5 to 5 1/2 pounds at full grown. They are such good

> boys. They only had one accident in the house today. Everytime I

> take them out, they go outside. The people we bought them from said

> they were 9 weeks old and born the end of July. Nine weeks would be

> August. I asked the Vet how old they were and they said that they

> were probably born the end of August so we chose August 25 as their

> birthdate because that is my son's bday so it will be easy to

> remember.....gosh they are cute......I bought Christmas and Halloween

> fabric to try and make them some little coats because it is getting

> pretty cold out here.

>

> I gotta quit babbling about the boys......

>

> Take care,

>

> Zanna

>

October 27, 2002