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

Welcome back, Dawn! Good for you...it sounds as though you took things into your own hands during your visit with the doctor. Sometimes you do have to rush the words out and talk fast and be stubborn because the scheduled appointment time is never long enough to get it all out. Get some rest! Annette

-----Original Message-----From: Dawn Sent: Saturday, October 26, 2002 1:43 PMTo: OurMyositis Subject: I'm baaaaaaack!!!Hello, everyone. I made it back from Montreal, safe and sound, lastnight around 6:00pm. Our flight was delayed an hour, but otherwise,they were both good flights. We didn't crash and that's the mainthing. LOL. Well, I think my visit to the specialist went prettygood. I'll know more in another week or so, when I get a copy of theletter that she dictated to her secretary. I'm not sure if it's goingto be a letter to CPP or my GP, but either way, it's going to stresswhat 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 wouldhave a problem saying it was "permanent" and I'm really not sure whatshe 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 mybook. We did alot of walking around the city the day before and thatmorning, so went I went in there, I was barely moving. She had to stopand wait for me a few times. She had me go through my entire medicalhistory (especially since the blood clots last Nov.) and when I told herI was going to see a Hemotologist in Nov., she said she wants a copy ofhis reports. She wants to find the source of where my pain is comingfrom; 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: anotherbiopsy (said my last one wasn't satisfactory), and MRI on both mymuscles and my brain, several blood tests, probably another EMG(noooo!!). She said I'd have to be admitted into their hospital, sinceI'm on Coumadin. Before the biopsy, I'll have to be switched to Heparinand the Heparin stopped about 6 hrs. before. The same thing was donewhen I had it done here. She's guessing it will be sometime in Dec. andthe hospital will call me immediately. Now my only hope is that theMDA© will pay for my airfare yet again. I sure hope so, however, shesaid often times when the hospital calls you and says that a bed isopen, you have to be there within 12-24 hrs. and the MDA© needs ATLEAST 2 weeks notice. Not sure how that will work. Toward the end ofit, I was talking and talking as if my life depended on it (I wasn'tquite sure if I was going to get the kind of report that CPP needed toapprove me) and I could just tell that she wanted me to shut up and thatthe appt. was officially over, but I didn't care....I just kept onstressing facts that I wanted her to acknowledge. I'm a bit nervousthat this whole thing was for nothing, however, if worst comes to worstand 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 towait for these results anyway. ARGH!! My Aunt came in with me and whenI was getting re-dressed after my exam, she put my socks on for me andthe Dr. walked in and saw that. Little things like that, I think willhelp. I also started crying when I first went in there and startedtalking and so did my Aunt, and the Dr. was very understanding. Sheasked why I was crying and I just told her that she had no idea how niceit is to see someone who actually knows about PM and what it is that Igo through. She couldn't understand why I was only taking lots ofcodeine for my pain, when I could be taking Neurontin (I think that'sthe name) with no drug interactions with Coumadin. So, she gave me anRX for that. We'll see how that helps. And she said most definatelystart the Glucosomine (Dr. Idiot wouldn't let me). She said theChondotrin (sp?) wasn't really necessary but the Glucosomine was. Whatdoes the Chondotrin (sp?) help?? She also told me to ask my GP aboutgetting the injection form of Methx., since I have awful side affects.She always used Imuran as her first course of action after the Pred. butshe said there's no sense in switching me where I've responded well tothe Methx. Oh, and she also wants me OFF the Prednisone by the time Ihave my muscle biopsy done, so I'm to alternate 5 mg. one day, 0 thenext, etc. and to do that for 1 mth. and then stop all together. I knowyou all are thinking that's a majorly fast drop, however, the Prednisonewill affect the results of my biopsy. She also stressed the importanceof me taking off this weight that I've gained. She said 55 lbs. sinceJan. is way too much (no kidding!!) and I need this weight off. Shesaid I should look into hiring a Dietician (ha!!). I felt like saying,"with what money???". The closest I'll get to a dietician is joiningWeight Watchers again. She said I definately could exercise since myCPK's are normal, but I don't think she understands how my asthma playsa 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. Wedefinately saw some interesting sights, that us country bumpkins are NOTused to seeing. We say many homeless people, which really bothered us(sleeping right on the sidewalk with nothing under them and it wasCOLD!). We saw cross-dressers (men dressed as women). I'm sure itwasn'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 crowdedwith people. And here I was holding everyone up by hobbling around onmy cane. LOL. Oh, it was quite interesting, but we're glad to be backhome. I missed you all and now I've got to catch up on 200+ emails.Phew!!Love ya all,Dawn

October 26, 2002

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 26, 2002

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

Thanks, Lesley. Yes, you are right in that sooo much depends upon this letter

that she writes. I'm anxious to receive my copy of it. Let's hope and pray it

seals the deal for me and I won't have to go before the Review Tribunal. Yes,

it is definately nice to get out of that rat race. Nice place to visit, but

would NEVER want to live there or even visit there for any longer than I did.

I'm such a home body. LOL.

Love,

Dawn

lesley prior wrote:

> 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

> >

>

> _________________________________________________________________

> Surf the Web without missing calls! Get MSN Broadband.

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October 27, 2002