New OurMyositis member

[Guest guest]

hi vicki my name is Adannia delvillar and i live in allentown Pa, im 17yrs

old and i have DM. i need help on chatting, how can i get in chatting rooms.

thank you

[Guest guest]

I would like to Welcome our newest member, lunaplena323@..., to our

list. Please feel free to tell us a little bit about yourself. My name

is Vicki from So, Calif and I have PM. We hope you enjoy your stay.

[Guest guest]

Hi Adannia ... WOW.... I really don't know anything about the chat

rooms at all. Is there any one of them your trying to get into or are

you just looking for a chat room. I think I can find you a chat room

for your age group if you don't already have one. Let me know and I'll

ask my friend who is a few years younger then you but has been on the

web a while now.

[Guest guest]

well thank you so much any chat room that i can talk with ill teens will be

good.

[Guest guest]

hey teddy i will like to keep in touch with you because i feel like im the

only one with this DM please write to me and let me know where and when your

going to be online. i would like to get to know you tell somethings about you.

[Guest guest]

Hi Andania

I'm Teddi and I also have DM,,,,,,,this is

a good list to share info, gripes and joys.

Welcme to the group!

Teddi

[Guest guest]

Ok.. I'll find out for you. It will have to be tomorrow because she

already went to bed about an hour ago. I'll leave her a message

tonight. Hope you have a good day tomorrow.

[This message contained attachments]

[Guest guest]

Adannia.... I found out if you go to talk city and type in " TeenTalk "

that's suppose to be a great teen chat room!! Good luck to you... I

wish I could help you more.

[Guest guest]

Please WELCOME our newest member, jrneal288@..., to our list. When

you have a minute please tell us a little bit about yourself. My name

is Vicki and I'm from So. Calif and I have PM. Thank you for joining

and we hope you enjoy your stay.

[Guest guest]

Please welcome our newest member julieledford@... to the list. My

name is Vicki and I have PM... when you get a minute please tell us a

little bit about yourself. Thank you for joining and we hope you enjoy

your stay.

[Guest guest]

hib julie my name is Adannia and i have DM and 17yrs old and i live in Pa. im

junior in high school and i love to cook.

Adannia

[Guest guest]

Hey, :

Looks like part of the " family " is here. I just joined the group today - Jim

[Guest guest]

wrote her wonderful story for the Myositis book - I hope the rest of

you follow her example :>)

Jim

[Guest guest]

Thank you for the warm welcome.

My name is and I am 36 years old. I was diagnosed with DM in January

1995. Before DM I was sooooooo very active. I LOVE skiing and the great

outdoors. But all that came to a halt the day I was diagnosed with DM.

I have been on Prednisone, Methotrexate, Cyclosporine and so much junk to

counter act the bad side affects of the meds. for 5+ years.

I have been on Prednisone for the past 5 years and 3 mos., I just stopped

taking it about a month ago. The majority of the time my dose was 40 mg

daily, there for a time I was able to drop down a bit. I hated what it did

to me. It made me moody and crazy and my arms felt like they were weighed

down with concrete, not to mention the rounded shape I developed. I was

given Zoloft after the first 10 mos. of Prednisone and all was

better...mentally. Then came the sensitive teeth...geesh, not just to cold,

but to hot too. My denstist swore my teeth were fine and told me to use a

toothpaste for sensitive teeth, I use Crest Sensitivity Protection and it

helps, some. I also had to take 800 mg of Calcium a day since Prednisone

does a number on bones and after bone density scans began showing less dense

bones, I was prescribed Miacalcin. I also had a tough time sleeping normal

hours being on Prednisone, the only thing I found to help me was Unisom...no

side affects, just a great nights sleep. But the memory loss is what began

to be such a pain. I couldn't believe I was having such memory problems at

my young age.

About 6 mos. after diagnosis 15 mg weekly of Methotrexate was

prescribed...that stuff did a number on me and I hated it! I had headaches

all of the time and ulcers in my mouth. After about a year of that junk I

stopped taking it. So for the next year they adjusted my Prednisone up and

down...then I was told I needed to go back on the Methotrexate and was

prescribed 1 mg Folic Acid daily to help with the side affects of the

Methotrexate...it helped. So for the next year and a half I was on

Prednisone and Methotrexate, then my digestive system decided it didn't want

to digest the Methotrexate any longer and I had to begin injecting the

med...which was easy at first, but became harder with each passing week.

Then at 4 years after diagnosis, I was prescribed Cyclosporine...let me tell

you, THIS is a killer drug! I stayed sick on this junk! I had night

sweats, ran fevers constantly, and had night mares gallor. I felt horrible

on this junk and it was beginning to get harder and harder to get out of

bed. After being on the Cyclosporine (along with the Prednisone and

Methotrexate too) I began falling and hurting myself. That lasted a month,

I then stopped taking the Cyclosporine, per doctors orders. I was still on

the Prednisone and Methotrexate and still not getting any better. I also

had developed TERRIBLE acid reflux this past January.

In the beginning it was " Do NOT exercise " and now, for the past 8 months, I

am told, " we feel that exercise would actually benefit you, so begin

exercising " . I have an internal specialist doctor where I live in Louisiana

that I see about every other month or so and then a RA doctor in Dallas, TX

that I see every 4-6 weeks...I've been making that 4.5 hour drive every 4-6

weeks for the past 5+ years and it has gotten OLD. I went to see a doctor

in Tulsa, OK. on March 6 who supposedly 'specializes' in myositis. Well, I

haven't heard back from him after he took oodles of blood and had an MRI

done on me. Thank heavens I'm not afraid of needles since I have blood

drawn for test every 4 weeks.

I had been battling in my mind if I wanted to continue doing things the

doctors way, or take control and do things my way...the latter won out!

When I returned home from seeing the doctor in Tulsa, I was a day past due

for my Metho. injection...I didn't do it. I decided to stop taking it.

When I seemed to be doing alright with that, I stopped ALL other meds. No

tapering off, just plain quit. I was supposed to have seen the doctor in

Dallas the last week of March, I called and changed the appointment to April

17. Then I just couldn't go, knowing that I wanted off of the meds. and not

wanting to be talked back into taking them, I canceled that appointment

also. When I saw my local doctor this past Tuesday, he supported my

decision and wants me to try it med free for a while too. Since stopping

the meds. I had my good days and my bad days and on the really bad days when

the RA was too rough, I would take Vioxx and it helped relieve me of the

pain.

In Feb. when I had blood test, my CK was 3500 and my SED rate was 78. When

I just had blood test taken last week, my CK was 7300, but my SED rate was

only 21. If you're unfamiliar with the SED rate, it is how they can tell

the level of pain you have, 0-20 being the normal range.

I also had been trying to see a healer from the UK and had not been lucky

enough to book an appointment with her. I saw her on Beyond Chance on the

Lifetime channel. I looked her up. She comes to the states twice a year

and she books up her appointments really quickly. But, I was lucky enough

to find a healer in the city where I live. She doesn't promote what she

does, and she had only worked on her family members, never anyone else. So

just being in the right place at the right time and having an open mind made

a wonderful change for the better for me. I have had two innersessions with

her, the hands on healing, and she has taught me how to meditate. I

meditate nightly and I have been pain free 95% of the time since seeing her

for the first time. Please don't think I'm nuts, I am far from it. I am

open minded and open to anything other than the toxic meds. the doctors keep

pouring into my system. I don't want liver problems and bone problems and

who knows what else from the toxic meds, I just want to be well or at least

feel well again. And let me tell you, being off of Methotrexate for over 8

weeks and off of Prednisone and all of the other meds., I feel great! I am

no longer icky, yucky feeling. And meditating has been a wonderful help.

The healer I am seeing and I both feel that God put us in the right place at

the right time to meet one another, because without her, I know I wouldn't

have been able to stay off of the meds. for very long...the pain was setting

in again. You know, I didn't tell her where I hurt before our first

innersession...but she zeroed in on my four major areas, my thighs, hands,

chest and shoulders. It is pretty amazing to me that she knew where my pain

was...I said nothing to give it away to her either.

I do have a question for all of you, what is the highest your CK has been.

The highest mine was at was 18,000+. I was just wondering if that was sort

of normal for myositis patients to have it that high.

Sorry this ended up being forever long...I just wanted to fill you all in on

my bout with DM.

Thanks for allowing me to join.

*karen*

Re: New OurMyositis member

>

> Please WELCOME our newest member, yorkiland@..., to our

> group. My name is Vicki and when you feel comfortable please tell us a

> little bit about yourself. We have a great bunch of people here so we

> hope you enjoy your stay.

>

..

[Guest guest]

Hi .... don't worry about the length of your emails. I thought it

was wonderful. Now we know what you've gone through. I feel very

fortunate in that I have doctors who are willing (and so am I) to try

new things. I have been on the Cyclorsporine and I also got very

sick.... I made the decision to stay on it for a month after that the

doctor took me off of it. I can't use the Methotrexate because one of

the side effect of that drug is pneumonia. Since I have lung

involvement we all decided that it was not the drug to take. The worst

part is the lack of energy and since my lungs are involved...without the

energy I have a hard time breathing in and out. I have been off the

drugs for a period of one month and the PM jumped up and bit me. I

became so sick. So, I'm now on Enbrel and it's by injection form. This

drug does give me more energy and I feel so much better while taking it.

We are watching a side effect that we're not sure if it's the Enbrel or

not. It's a wait and see type of thing. My CK level in Oct of 98,

while in the hospital, was 12,000. I never want to be that sick ever

again.

I don't think your nuts at all. We have a gal on the list, Connie, who

does antibiotic therapy. I'm a firm believer that you have to do what

is best for you. Your doctor really doesn't have the right to MAKE you

take meds that make you sicker.

As with anyone, what works for one will not work for another. That's

what is so difficult about these diseases. There really isn't a set of

rules for the medication. It's all trial and error.

If you feel this is the way to go for yourself then go for it girl.

Part of this disease is the inability to go into a deep sleep during the

night. While in a deep sleep this is when the muscles rest and repair

themselves. You end up with less pain the next day after a good nights

sleep. I take the Effexor for that and the Celebrex for the pain. It

was much worse before these two drugs. I'm sure once Connie reads your

post she'll be able to tell you more about her treatment. I'm so happy

your feeling so much better. Take care

Vicki

[Guest guest]

WOW.... you two know each other..? Thats cool...

[Guest guest]

Thanks Vicki,

I was hoping the length of my message wasn't too long.

I apologize if I came across as if my doctors aren't willing to work with me on meds. Believe me, they have over the past 5 years. When I just could not tolerate something we would make changes to accommodate my needs. My biggest fear was that the next step the doctor in Dallas would want to take was the IvIG and I do not want to have to do that. She has worked with me. The only real problem I have with the doctor is she knows how much my husband and I want to have children, yet she was not getting me off of these meds. Just fluctuating doses. My husband is 42 and I am going to be 37 this year and we haven't had a chance to start our family. That was one of the major factors in my wanting off of the meds. The other factors being how awful the meds. made me feel, how I had been on them over 5 years with no relief in sight, and how toxic they are to the body. It was just too many negatives with the meds.

I am really thrilled at how well I am doing. Albeit, I wasn't doing too hot before seeing the healer and learning how to meditate. I meditate before bed so I am totally relaxed. I have been able to sleep beautifully since I began meditating too. I used to wake up and take about 30-45 minutes to get where I could move out of bed, now I am up and at 'em. I also used to wake up around 10:00 or 11:00, now I wake up on my own and ready to go around 7:00 to 8:00 in the morning. It has made a world of difference for me learning to meditate.

I hate to hear you have lung involvement...that is scary. I'm not familiar with Enbrel or Effexor. I did however try the Celebrex and it did nothing for my pain. Funny isn't it, how some things work for some, yet not a darn bit on others.

You know, another thing that gets me, before I was diagnosed with DM, I wasn't one to take meds at all. I have a very high tolerance for pain and just wasn't a pill taking person...then after this and taking so many pills a day...whew! I felt like a druggie.

The Tulsa doctor prescribed two more vitamins for me that are supposed to be good at helping the muscles, when taken together, it is l-Carnitine and Rboflavin. I had the prescriptions filled, but only took them for like a week. You have to take so many pills three times a day and I just cannot remember to take them.

I think the best medicine is a positive attitude too. I try to stay positive and not let the disease get me down. It's hard some days, but basically, I am able to keep a smile on my face and happy in my heart.

If you don't mind, fill me in on how long you've had myositis and a bit about yourself, it really helps to hear from others to know "you're not alone".

And one more question...are you the list owner? If so, thank you so much for starting this list! Just like Jim's book, it is good for us to be able to read and connect with others and to know there is a support group out there.

Thank you,

*karen*

..

[Guest guest]

blush....Jim...it wasn't that great now...but thank you.

Yes, I did submit my story for his book. You all should really join in and send in your stories, it will help so many others when diagnosed with this disease, as well as help family members cope with it too.

*karen*

Re: Re: New OurMyositis member

wrote her wonderful story for the Myositis book - I hope the rest of you follow her example :>)Jim

..

[Guest guest]

....here is my web page that I put together right after I got out

of the hospital. I have heard that some computers have trouble with it.

I've been meaning to redo the page but haven't so far. I hope you'll be

able to read it. Let me know if you can't.

http://www.angelfire.com/in2/mandy2/index.html 

I have always been so active with riding bikes, hiking, running,

swimming, then weight lifting. I worked out three hours everyday except

Sunday. Now I have to say that weight lifting does not turn a womans

body into looking like a mans body. When you see a woman with huge

muscles they have taken something. I really enjoyed the idea of being

able to sculpt the body. Very much a health nut. But, one day I woke

up with flu like symptoms. I went to the gym anyway. After a few days

I still didn't feel good so I decided to take some days off. After

three weeks I went to the doctor. He told me I had a virus that was

going around. I never recovered, it was the starting (I believe) of the

PM. It wasn't until 95, after I had a house fire and lost all 4 of my

dogs that this jumped out. After that it was all down hill.

I think with this disease, the older you are the worse it can be. Also,

I not only have the PM but have the Anti-Jo-1 and almost always the Jo-1

means lung involvement.

I have the interstitial lung disease but that doesn't bother me as much

as the lung muscles not wanting to work. When I loose my energy I feel

like I have a 600 lb guy sitting on my chest. I never even thought of

how hard it would be to raise and lower my lungs before. I've learned

that muscles are very important...lol My disease also affects my throat

and eyes as well. On my bad days when I have little energy, I can't see

very good and it hurts to move my eyes side to side. I sleep with

oxygen at night. When I entered the hospital I only had 2 " of my lungs

opened up for breathing. They have no idea how I made it that far. My

will to live and God up above is all I can say. I'm the type of person

that likes things right up front. Once I was able to talk, after 5

days, I wanted to know what I had and my chances for living. At that

time, their main goal was to get me to the year mark. I beat that and

keep them guessing all the time. They still worry that my lung muscles

will stop in the middle of the night....I keep telling them to not worry

about it at all. If it's meant to be it will just be that way and all

the great doctors in the world won't stop it. Throughout all of this,

my sense of humor has brought me through the worst part. I have found

that having this disease you NEED a sense of humor.

When I get to a very low point, I think of the many children in the

world with cancer or other diseases who might not see their next

birthday...then I realize that I have been blessed with the life I have.

Doesn't take to much to make me happy. I go once a month to give my

plasma to the research center. Seems the Jo-1 is nearly impossible to

kill right now. That's what they're working on.

One day my doctor told me that when he sees my name on the board he

knows he'll have a good day. He said people go in to see him for the

smallest thing and complain the loudest and expect a miracle performed

right there. Then he tells me that here I am with a life threating

disease and I can find humor in it and still only worry that I might be

taking up to much of their time. Maybe that's why my appts. always last

1 1/2 hrs.

I know things happen for a reason, but I'm still trying to figure this

one out. I have noticed that for the most part, everyone with this

disease is a strong individual with a great sense of humor.

It makes sense for you to get off all meds if you want a family. I did

read that Meth is not the drug to take if your thinking about a family.

I wonder if there is a way to check your system to see if all the metho

is out of it before you get pregnant.

Enbrel is a new drug for RA patients. It's really new for Myositis

patients. It somehow works on the inflamed blood cells. All I know is

that I'm able to get up and move around. Now I can walk out my drive.

They have me up for only two hours a day. Later, if I'm a good girl, I

get to stay up longer. I'm my own worst enemy. With Enbrel there are

some draw backs...if you already have something in your body, this drug

will bring it out. Like cancer.... some rare tumors have come up in

some patients that have taken it for a long period of time.

I also take vitamin E, C and a multi. I also take the Miacalcin... I

love it, since I don't have to swallow it.

The very first thing out of my doctors mouth in the hospital was....

stay positive or else this will get you. This is very true.

Yes, I am the list owner. I started it because I wanted to talk to

people who had the same disease as I. I was going to the BB every night

but it wasn't what I was after. I think if you talk about your illness

to people that know what your going through, it helps.  Sometimes it

is hard for family members to really understand all the ups and downs.

Here on this list you can vent, scream and carry on and no one is going

to get upset at you.....cause we've all been there.

 

Well, let me know if you are able to read my web page and now I'm saying

good night....Happy Monday everyone.

Hugs to all

Vicki

[Guest guest]

Here is a site that gives you the meaning of some of the lab tests.

http://www.orthop.washington.edu/Bone%20and%20Joint%20Sources/xzzzzzlz1_2.html

[Guest guest]

hey vicki will love t submit my storie, to tell the turth lately i have not

been doing so good lately. i will be glad to submit my fabulous storie i will

just need to know if i should posted here or some where else. i hope you r

doing ok . take care

luna

[Guest guest]

Hi Luna

What you need to do is write it out and email it to Jim on the list.

He's the one doing the book. I hope you start to feel better kiddo.

You seem to be bouncing up and down with this disease.

Take care

Vicki

[Guest guest]

Welcome to the new members...

My name is karen and I have dermatomyositis. I am 36 yrs. old and was diagnosed a little over 5 years ago. I won't bore the others with repeating everything about me and DM, so you are more than welcome to go to the archives and read up on my introduction...it is archive number 946...warning, it is long, that's why I don't want to bore the others with it again =

Welcome you two and please do send in an introduction when you get the chance. This is a warm and super supportive group! They know and share a lot of information, as well as laughs.

warm hugs,

*karen*

DM

..

[Guest guest]

Please WELCOME our newest member, hoopspuck@..., to the list. When

you feel comfortable please tell us a little bit about yourself. We

have a great bunch of caring people here so feel free to ask any

question you like. My name is Vicki, the list owner, and I'm from So.

Calif. where this heat will never end... hope you enjoy your stay.

Vicki-PM