DEB + lengthy intro

[Guest guest]

Hi Deb,

You sound just like a Deb on my old job to the oint where I wonder

if you are! You don't sound like a whiner at all. This can really

get to you and wear you down down down and that + research are what

these groups are for to my way of thinking. Who else really

understands. You sound like you are waging an admirable struggle.

I have posted briefly here before but I will give a lenghtier intro

here just to, well better introduce myself. thanks yet again.

I'm still new to the group. I was diagnosed with dermatomyositis in

September by a skin biopsy. I had a severe allergic reaction (hives,

dizziness, vomiting, throat beginning to close) that took me to the

ER in July (cause never found) 2005 and the followup with the

allergist led to the diagnosis. One week later, I tripped and badly

sprained and chipped a tiny piece of bone off my ankle while walking

so I showed up in her office on crutches too. As it happened, she

was also a rheumatologist and an immunologist. So luckily for me,

despite off-the-chart allergy scratch test results (which were not a

surprise to me I've had scratch tests before) she suspected an

autoimmune disorder and got me diagnosed by a dermatologist.

I have a very active life and the disease has been confusing and

frightening for me. It also comes with extensive cancer screenings,

as it is considered a possible symptom of underlying cancer. A small

mass found on my ovary is being followed but it is probably a cyst.

Symptoms: I'm 50 and was pretty fit. After having good skin my whole

life, I developed big bags under my eyes, a rash around my neck and

on the backs of my arms, and many other signs, both associated with

DM and not associated with it (like rosacea, excema, increased moles

and skin tags). A lifelong asthma that has been mostly latent as an

adult got worse. I used to just carry an inhaler around in my purse

(unused for years on end) and take daily meds once every couple

years AT MOST for a couple months at a time. Now I am on advair

twice a day and that + the daily prednisone for the DM does not

completely control and I sometimes still need an albuterol inhaler.

I was a jogger but have been too tired to jog for the last year or

so. Fatigue is a very very big issue. I get all over muscle pains

and aches. I don't notice alot of muscle weakness but I have more

trouble getting up off the floor and need t pull myslef up with

something. I've dealt with low back pain and migraines all along,

but over the last couple years I would sometimes get them both at

once with no triggeres. In the case of the back pain, it would come

and go - poof! Gone. No recovery period. I have also had attacks of

sharp pains in my ankle (doc put me on crutches for two days), neck,

and bicep (couldn't turn my keys in ignition without support from

other arm) that lasted 2-3 days and then just disappeared. I get

brain fogginess too.

I was put on 20 mg. of prednisone and a small amount of methotrexate

for one month. The prednisone was scaled down to none over that

month and all the symptoms came back. My doc put me back on 10 mg of

daily prednisone and left me there while she builds me up to 8 pills

of methotrexate a week and then she is going to reevaluate. The 10

mg of prednisone is taking care of the skin pretty good but I am

still very tired and asthma is worse and I get pain. Headaches have

improved some with prednisone though.

I am interested in finding out about antibiotic therapy to not be on

prednisone or metho in the future and am seeing acupuncturist at the

research hospital near where I work who are also MDs and researching

in how acupuncture can support those battling chronic illnesses. I

take folic acid, magnesium, calcium, Vitamin D, a multivitamin,

Vitamin E and something called Green Vibrance. I also juice when I

have time. I eat pretty plain.

May not post much because of extremely busy schedule but I wanted

you to thank you and let you know am here.

Thanks very much!

>

> While I am not much help right now, feel free to whine here. We

> welcome it. I am feeling like a bawl bag right now so I am glad

that

> we are all here to help each other. We can all pray for each

other.

> Some days will be better than others. When I was first dx with

RA.

> I went out in my truck one night (so the kids wouldn't hear me)

and

> cried and cried, serious wailing and wahhing. I fell asleep

there

> and woke and came in the house. My hubby just doesn't get it, as

a

> matter of fact my marriage has all but disintegrated coupled with

a

> far less than supportive in laws down the street. I am young but

> feel very old. I will be happy to be there for you in whatever

way

> I can. Love to all, Cassy

>

> --- In , " debbie " <hair2cut00@y...>

wrote:

> >

> > hello again.. I hope someone can talk to me.. i hate whining

also

> but

> > having trouble coping. after all the surgeries over the yrs i

was

> > hoping for many without, but it just keeps going and im getting

to

> > tired mentally and physically to deal with everything. i told ya

> last

> > week im scheduled for arm surgery the end of the month, now i

cant

> > even hardly eat. i know part of my med. problems included with

the

> > mixed connective disease is degenerative arthritis.10 yrs ago

when

> i

> > was 33 i was told my bone in my jaw had been wearing away and

that

> i

> > would prob be a candidate for jaw replacement?? well my jaw went

> with

> > this major whole body flare ive been going thru for a month. got

> the

> > bad news that there is nothing else they can do for me but some

> kind

> > of surgery. It hurts so bad but here im having to go for my

other

> > surgery. As everyone tells me its just another page in the book

of

> > debbie, but they all think i get through it but sometimes i just

> want

> > to give up cause now i know there is more ahead.i may show tough

on

> > the outside but im scared on the inside. i think this is the

first

> > time i actually really sat and cried.My daughter is in college

and

> my

> > other one doesnt live at home.. im seperated 5 yrs now. i do

date

> but

> > find when i start getting close to someone i back off cause of

all

> my

> > problems. havnt found one to even discuss it with. This seems to

be

> > the only place i can talk about it. I only work part time and

its

> for

> > a place that does know my limits in a way. I just want a big

hug..

> > love and hugs to ya all... debbie

> >

>

[Guest guest]

,

Welcome to the group! Sorry that you've had such a rough time lately.

Did your physicians investigate the possibility that your dermatomyositis

has affected your lungs?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] DEB + lengthy intro

> Hi Deb,

>

> You sound just like a Deb on my old job to the oint where I wonder

> if you are! You don't sound like a whiner at all. This can really

> get to you and wear you down down down and that + research are what

> these groups are for to my way of thinking. Who else really

> understands. You sound like you are waging an admirable struggle.

>

> I have posted briefly here before but I will give a lenghtier intro

> here just to, well better introduce myself. thanks yet again.

>

>

>

> I'm still new to the group. I was diagnosed with dermatomyositis in

> September by a skin biopsy. I had a severe allergic reaction (hives,

> dizziness, vomiting, throat beginning to close) that took me to the

> ER in July (cause never found) 2005 and the followup with the

> allergist led to the diagnosis. One week later, I tripped and badly

> sprained and chipped a tiny piece of bone off my ankle while walking

> so I showed up in her office on crutches too. As it happened, she

> was also a rheumatologist and an immunologist. So luckily for me,

> despite off-the-chart allergy scratch test results (which were not a

> surprise to me I've had scratch tests before) she suspected an

> autoimmune disorder and got me diagnosed by a dermatologist.

>

> I have a very active life and the disease has been confusing and

> frightening for me. It also comes with extensive cancer screenings,

> as it is considered a possible symptom of underlying cancer. A small

> mass found on my ovary is being followed but it is probably a cyst.

>

> Symptoms: I'm 50 and was pretty fit. After having good skin my whole

> life, I developed big bags under my eyes, a rash around my neck and

> on the backs of my arms, and many other signs, both associated with

> DM and not associated with it (like rosacea, excema, increased moles

> and skin tags). A lifelong asthma that has been mostly latent as an

> adult got worse. I used to just carry an inhaler around in my purse

> (unused for years on end) and take daily meds once every couple

> years AT MOST for a couple months at a time. Now I am on advair

> twice a day and that + the daily prednisone for the DM does not

> completely control and I sometimes still need an albuterol inhaler.

> I was a jogger but have been too tired to jog for the last year or

> so. Fatigue is a very very big issue. I get all over muscle pains

> and aches. I don't notice alot of muscle weakness but I have more

> trouble getting up off the floor and need t pull myslef up with

> something. I've dealt with low back pain and migraines all along,

> but over the last couple years I would sometimes get them both at

> once with no triggeres. In the case of the back pain, it would come

> and go - poof! Gone. No recovery period. I have also had attacks of

> sharp pains in my ankle (doc put me on crutches for two days), neck,

> and bicep (couldn't turn my keys in ignition without support from

> other arm) that lasted 2-3 days and then just disappeared. I get

> brain fogginess too.

>

> I was put on 20 mg. of prednisone and a small amount of methotrexate

> for one month. The prednisone was scaled down to none over that

> month and all the symptoms came back. My doc put me back on 10 mg of

> daily prednisone and left me there while she builds me up to 8 pills

> of methotrexate a week and then she is going to reevaluate. The 10

> mg of prednisone is taking care of the skin pretty good but I am

> still very tired and asthma is worse and I get pain. Headaches have

> improved some with prednisone though.

>

> I am interested in finding out about antibiotic therapy to not be on

> prednisone or metho in the future and am seeing acupuncturist at the

> research hospital near where I work who are also MDs and researching

> in how acupuncture can support those battling chronic illnesses. I

> take folic acid, magnesium, calcium, Vitamin D, a multivitamin,

> Vitamin E and something called Green Vibrance. I also juice when I

> have time. I eat pretty plain.

>

> May not post much because of extremely busy schedule but I wanted

> you to thank you and let you know am here.

>

> Thanks very much!

>

>

[Guest guest]

Hi ,

I am scheduled for a second pulmonary function test in March. I had

a baseline one done the first time I went in. From a lifetime of

mostly latent asthma, it showed I apparently have reversible lung

damage in the small air ways and none in the large. Reversible means

that it can be corrected with medication.

When I mentoned to her at my follow-up, when I had tapered off the

prednisone (20 mg a day to zero) about how much worse the asthma

was, she added back in 10 mg. of prednisone, and also added Advair

twice a day. I STILL have to use my inhaler sometimes. She tells me

she believes it is not the disease, but that I had adjusted to a low

level of function and the prednisone had gotten me used to a higher

level. So went I got tapered off I noticed it.

I don't buy it and I told her so. I really understand what she means

and there HAVE been times during my adult life when I was walking

around highly depleted of oxygen and not realizing it, because I

wasn't audibly wheezing or short of breath, but I learned from those

times and I know what to look for. The asthma IS worse fo whatever

reason.

I work at a University adjacent to a teaching/reearch hospital. The

two acupuncturists I see there partner to research how acupuncture

can support the treatment of people with chronic illnesses. They are

also MDs. In their opinion, a lung complication from DM probably

would not occur until much further down the road. They think and

that I am just plain in a weakened state from the disease, so

naturally, the asthma would be worse too.

I don't know what I think. It all happnened at the same time.

Long answer to a short question.

Thank you.

>

> ,

>

> Welcome to the group! Sorry that you've had such a rough time

lately.

>

> Did your physicians investigate the possibility that your

dermatomyositis

> has affected your lungs?

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] DEB + lengthy intro

>

>

> > Hi Deb,

> >

> > You sound just like a Deb on my old job to the oint where I

wonder

> > if you are! You don't sound like a whiner at all. This can really

> > get to you and wear you down down down and that + research are

what

> > these groups are for to my way of thinking. Who else really

> > understands. You sound like you are waging an admirable struggle.

> >

> > I have posted briefly here before but I will give a lenghtier

intro

> > here just to, well better introduce myself. thanks yet again.

> >

> >

> >

> > I'm still new to the group. I was diagnosed with

dermatomyositis in

> > September by a skin biopsy. I had a severe allergic reaction

(hives,

> > dizziness, vomiting, throat beginning to close) that took me to

the

> > ER in July (cause never found) 2005 and the followup with the

> > allergist led to the diagnosis. One week later, I tripped and

badly

> > sprained and chipped a tiny piece of bone off my ankle while

walking

> > so I showed up in her office on crutches too. As it happened, she

> > was also a rheumatologist and an immunologist. So luckily for me,

> > despite off-the-chart allergy scratch test results (which were

not a

> > surprise to me I've had scratch tests before) she suspected an

> > autoimmune disorder and got me diagnosed by a dermatologist.

> >

> > I have a very active life and the disease has been confusing and

> > frightening for me. It also comes with extensive cancer

screenings,

> > as it is considered a possible symptom of underlying cancer. A

small

> > mass found on my ovary is being followed but it is probably a

cyst.

> >

> > Symptoms: I'm 50 and was pretty fit. After having good skin my

whole

> > life, I developed big bags under my eyes, a rash around my neck

and

> > on the backs of my arms, and many other signs, both associated

with

> > DM and not associated with it (like rosacea, excema, increased

moles

> > and skin tags). A lifelong asthma that has been mostly latent as

an

> > adult got worse. I used to just carry an inhaler around in my

purse

> > (unused for years on end) and take daily meds once every couple

> > years AT MOST for a couple months at a time. Now I am on advair

> > twice a day and that + the daily prednisone for the DM does not

> > completely control and I sometimes still need an albuterol

inhaler.

> > I was a jogger but have been too tired to jog for the last year

or

> > so. Fatigue is a very very big issue. I get all over muscle pains

> > and aches. I don't notice alot of muscle weakness but I have more

> > trouble getting up off the floor and need t pull myslef up with

> > something. I've dealt with low back pain and migraines all along,

> > but over the last couple years I would sometimes get them both at

> > once with no triggeres. In the case of the back pain, it would

come

> > and go - poof! Gone. No recovery period. I have also had attacks

of

> > sharp pains in my ankle (doc put me on crutches for two days),

neck,

> > and bicep (couldn't turn my keys in ignition without support from

> > other arm) that lasted 2-3 days and then just disappeared. I get

> > brain fogginess too.

> >

> > I was put on 20 mg. of prednisone and a small amount of

methotrexate

> > for one month. The prednisone was scaled down to none over that

> > month and all the symptoms came back. My doc put me back on 10

mg of

> > daily prednisone and left me there while she builds me up to 8

pills

> > of methotrexate a week and then she is going to reevaluate. The

10

> > mg of prednisone is taking care of the skin pretty good but I am

> > still very tired and asthma is worse and I get pain. Headaches

have

> > improved some with prednisone though.

> >

> > I am interested in finding out about antibiotic therapy to not

be on

> > prednisone or metho in the future and am seeing acupuncturist at

the

> > research hospital near where I work who are also MDs and

researching

> > in how acupuncture can support those battling chronic illnesses.

I

> > take folic acid, magnesium, calcium, Vitamin D, a multivitamin,

> > Vitamin E and something called Green Vibrance. I also juice when

I

> > have time. I eat pretty plain.

> >

> > May not post much because of extremely busy schedule but I wanted

> > you to thank you and let you know am here.

> >

> > Thanks very much!

> >

> >

>