Re: Dermatomyositis- one more question about when to move on

June 9, 2009

do you have Celiac disease!?

On Tue, Jun 9, 2009 at 4:07 PM, Caren Smood <carensmd397@...> wrote:

>

> Hello All,

>

> One more question! I had very very severe long standing dermatomyositis. It

> robbed me of my twenties, and even my teens, though I did not have a

> diagnosis until four years ago. My CK has decreased 85% in two years!

> However, I am still too tired and brain fogged to accomplish anything other

> than errands. The school year begins again soon, and I would have to do

> something in the next month or so to make the big move to graduate school

> and out of my parents' house. I just don't know what to do. I don't want to

> live here forever and give up, but I don't want to sign on for something I

> can't handle, because I've done enough of that in the past. So many of you

> seem to have already had jobs and careers when you became ill. It seems SO

> much more difficult to still have so much education ahead of me after all

> of

> this. Is there anyone who still did a rigorous course of study AFTER being

> so ill?

>

> Thanks.

>

June 9, 2009

Hi Caren! You are asking the same question that everybody on this earth is

asking, Will I still be here tomorrow and if so, should I continue to plan my

life? " No one in the whole wide world has been given any guarantees about

tomorrow. We all have to live each day to the fullest and do the most we can

according to the ability we have been given. Diseases of the immune system, as

you and all of us know, are very unpredictable. Symptoms can rise and fall

suddenly. Some of us reach remission easily and some of us struggle. Since no

two people are alike, there is no way to measure how you will respond to the

various therapies and meds. You must seek your path and try to figure out the

best way for you. I am not saying to give up. Never give up your dreams &

goals. We can only let you know what worked for us and what didn't. I think what

you are going through right now is some depression, which is a normal symptom of

these diseases. I

have scleroderma. I am waiting for test results to see if I also have Lupus

and/or Sjrogens. I started on A/P Minocin in December 2005, I went into

remission in May 2007. At that time, I was elated and figured I would go on

Marshall Protocol in the fall to see if I could reach a cure. I continued with

Minocin, then started The Marshall Protocol in the fall and had the worst NY

winter of my life. I thought my lungs were frozen. I had severe pain in my

chest, each time I took a breath of cold air. I had pulmonary fibrosis. I ended

up confined to the house until April, when we were offered a job in southern

Texas. I moved immediately, just to get warm. I was still doing fairly well,

but started to think that maybe I was no longer in remission. It was difficult

to tell as sometimes I felt better and sometimes I just wanted to remain in bed

all day. I would get terrific bursts of energy and then become very lethargic.

I was

told that this was a herxheimer reaction. But I still was not sure and I don't

think anyone else really explained it to me. At least, I didn't understand it.

I am now in the final phase of M/P and having multiple problems. I am on

triple antibiotics. Most of the time, I don't feel very well, but I still keep

on going when I can and resting when I can't. I am taking each day as it

comes. I can only tell you my story. My only advise to you is not to give up

your dreams. But to take each day slowly. Go on with your education, just

take it a bit slower and take on a lighter load. Many of us have families that

include small children who need care or older parents we must take care of.

Everyone has some responsibility or some dream they want to fulfill. Go on with

your life! Take time to rest! Experiment with your diet. The depressed

thoughts will give way as you progress and see that you are reaching your

goals. Right

now, you look at your goals as though they were at the top of a long staircase

you think you will never reach. Someday, you may look down that same staircase

from the top. Just keep your mind on a positive note. State of mind plays a

key role in our recovery. Keep in touch with the group. They are a wealth of

information. Continue with A/P. For now this is the best therapy

without depressing the immune system. New developments are happening along the

way and who knows, maybe in our lifetime, we will see a cure. Get tested for

overlapping diseases that, perhaps, are hampering your progress. Someone asked

if you had celiac disease. Many of us with immune disorders do suffer from this

disease. That can be corrected with diet. Diet has a lot to do with getting

better. It could be that you need to be on a gluten - free diet. Your doctor

can do the tests for you. Your are on a journey. A very long, hard journey.

Your

successes will be determined on how you cope. They call these diseases a one

step forward and two steps backward disease. That is so true for me and many

others.Good luck to you dear. Reach for your goals! And become the best you

can be! Dolores & Mike

From: Caren Smood <carensmd397@...>

Subject: rheumatic Dermatomyositis- one more question about when to move on

rheumatic

Date: Tuesday, June 9, 2009, 4:07 PM

Hello All,

One more question! I had very very severe long standing dermatomyositis. It

robbed me of my twenties, and even my teens, though I did not have a

diagnosis until four years ago. My CK has decreased 85% in two years!

However, I am still too tired and brain fogged to accomplish anything other

than errands. The school year begins again soon, and I would have to do

something in the next month or so to make the big move to graduate school

and out of my parents' house. I just don't know what to do. I don't want to

live here forever and give up, but I don't want to sign on for something I

can't handle, because I've done enough of that in the past. So many of you

seem to have already had jobs and careers when you became ill. It seems SO

much more difficult to still have so much education ahead of me after all of

this. Is there anyone who still did a rigorous course of study AFTER being

so ill?

Thanks.

June 12, 2009

Dolores,

That was exactly what I needed to hear- the right words at the right time!

Thank you so so much. It's exactly what I need to remember: one small step

at a time each day. You don't make it to the top of the stairs in one big

leap. Thank you so much for spelling it all out. I'm going to print it out

and tape it to my wall!

Thanks Dolores, Hope you are doing well!

On Wed, Jun 10, 2009 at 1:52 AM, mike rosner <martysfolks2004@...>wrote:

>

> Hi Caren! You are asking the same question that everybody on this earth is

> asking, Will I still be here tomorrow and if so, should I continue to plan

> my life? " No one in the whole wide world has been given any guarantees

> about tomorrow. We all have to live each day to the fullest and do the most

> we can according to the ability we have been given. Diseases of the immune

> system, as you and all of us know, are very unpredictable. Symptoms can

> rise and fall suddenly. Some of us reach remission easily and some of us

> struggle. Since no two people are alike, there is no way to measure how you

> will respond to the various therapies and meds. You must seek your path and

> try to figure out the best way for you. I am not saying to give up. Never

> give up your dreams & goals. We can only let you know what worked for us and

> what didn't. I think what you are going through right now is some

> depression, which is a normal symptom of these diseases. I

> have scleroderma. I am waiting for test results to see if I also have

> Lupus and/or Sjrogens. I started on A/P Minocin in December 2005, I went

> into remission in May 2007. At that time, I was elated and figured I

> would go on Marshall Protocol in the fall to see if I could reach a cure. I

> continued with Minocin, then started The Marshall Protocol in the fall and

> had the worst NY winter of my life. I thought my lungs were frozen. I had

> severe pain in my chest, each time I took a breath of cold air. I had

> pulmonary fibrosis. I ended up confined to the house until April, when we

> were offered a job in southern Texas. I moved immediately, just to get

> warm. I was still doing fairly well, but started to think that maybe I was

> no longer in remission. It was difficult to tell as sometimes I felt better

> and sometimes I just wanted to remain in bed all day. I would get terrific

> bursts of energy and then become very lethargic. I was

> told that this was a herxheimer reaction. But I still was not sure and I

> don't think anyone else really explained it to me. At least, I didn't

> understand it. I am now in the final phase of M/P and having multiple

> problems. I am on triple antibiotics. Most of the time, I don't feel very

> well, but I still keep on going when I can and resting when I can't. I am

> taking each day as it comes. I can only tell you my story. My only advise

> to you is not to give up your dreams. But to take each day slowly. Go on

> with your education, just take it a bit slower and take on a lighter load.

> Many of us have families that include small children who need care or older

> parents we must take care of. Everyone has some responsibility or some

> dream they want to fulfill. Go on with your life! Take time to rest!

> Experiment with your diet. The depressed thoughts will give way as you

> progress and see that you are reaching your goals. Right

> now, you look at your goals as though they were at the top of a

> long staircase you think you will never reach. Someday, you may look down

> that same staircase from the top. Just keep your mind on a positive note.

> State of mind plays a key role in our recovery. Keep in touch with the

> group. They are a wealth of information. Continue with A/P. For now this

> is the best therapy without depressing the immune system. New

> developments are happening along the way and who knows, maybe in our

> lifetime, we will see a cure. Get tested for overlapping diseases that,

> perhaps, are hampering your progress. Someone asked if you had celiac

> disease. Many of us with immune disorders do suffer from this disease.

> That can be corrected with diet. Diet has a lot to do with getting better.

> It could be that you need to be on a gluten - free diet. Your doctor can do

> the tests for you. Your are on a journey. A very long, hard journey. Your

> successes will be determined on how you cope. They call these diseases a

> one step forward and two steps backward disease. That is so true for me and

> many others.Good luck to you dear. Reach for your goals! And become the

> best you can be! Dolores & Mike

>

> From: Caren Smood <carensmd397@... <carensmd397%40gmail.com>>

> Subject: rheumatic Dermatomyositis- one more question about when to move

> on

> rheumatic <rheumatic%40>

> Date: Tuesday, June 9, 2009, 4:07 PM