Thank you Myositis Support!

General
1

I want to say how wonderful it has been to have this site for support. It is nice to know that I am not the only one. It seems with this disease (dermamyositis) you go from one thing to another. Each new ache or symptom you don't know if it is the disease or something else. Two weeks ago I found a spot of pain on the left side of my chest, turned out it was a cracked rib from coughing with the flu. Now I have a very painful lump under my left armpit. It seems like I have to go to the Dr. every other week for one thing or another. Argh-h-h. People laugh when I count the days I have no pain, they don't understand.

I saw a sweatshirt on facebook for myositis awareness. I want it, but am not sure if it is really a legitimate organization. Does anyone know anything about it?

2

Hi LisaBeth!

We're glad to have you right back!
I'm sorry to hear that you cracked a rib! Ouch!

In regards to the sweatshirt, can you share a link or store where it's available?
Maren

3

http://teespring.com/MYOSISTIS#pid=212&cid=5820&sid=front

Here is the link to the sweatshirt.

4

LisaBeth,

Teespring is a reputable independent company that prints/produces apparel and merchandise with your own design.
It doesn't appear that this particular sweatshirt is affiliated with any charitable organization, but regardless, wearing it will certainly bring attention to the disease and spread the word!
M

5

Hi LisaBeth,

I see that link all the time on Facebook and people have questioned it because Myositis was spelled wrong in the post, but others verified it was legit. I love it!

6

I know where you are coming from if they look for something they find something, so I don't want them to look any more ! LOL! And telling people about my pain is hard for they don't understand I look to good to be so bad thats what they say, funny right they just don't understand. I don't know about the sweatshirt sorry ! Take care we care !

7

Thanks Maren. What type of Myositis. Do you have and do you have a Dr. That knows about Myositis. I have body inclusion. Where in MN are you?



Maren Holzinger said:

Hi LisaBeth!

We’re glad to have you right back!
I’m sorry to hear that you cracked a rib! Ouch!

In regards to the sweatshirt, can you share a link or store where it’s available?
Maren

8

Hi Muffy!

I have Dermatomyositis and go to Dr. Martha Grandits in St. Paul at the Allina clinic - she's one of the best and I highly recommend her. I also live in St. Paul :-)

muffy said:

Thanks Maren. What type of Myositis. Do you have and do you have a Dr. That knows about Myositis. I have body inclusion. Where in MN are you?

Maren Holzinger said:

Hi LisaBeth!

We're glad to have you right back!
I'm sorry to hear that you cracked a rib! Ouch!

In regards to the sweatshirt, can you share a link or store where it's available?
Maren