Having more testing on Friday OT

Many of you have been with me on my journey of countless tests and procedures due to my Mixed Connective Tissue Disease.

In April I was diagnosed with heart disease and pulmonary hypertension. PHT is the most common cause of death in people with MCTD. Back in the mid 1980's, median survival rate was only 2.8 years from the time they were diagnosed.

I'm LUCKY...since then they use echocardiogram with Doppler ultrasound for early detection..so my PHT was found in a very early stage...my cardiologist has been monitoring me closely. I've been referred to a diagnostic clinic a couple hours away where I see a pulmonologist who is very knowlegeable about autoimmmune diseases.

On Friday I will be going to the clinic for pulmonary lung function testing again. I believe the medication I'm on is helping and truly believe that I will  be ok.

Technology keeps improving and I think there is hope out there for everyone...I even think some day there will be a magic pill for us fibromites.

Hugs, Robin

xxxxxooooooo!  Thinking of you...

Huggies

Donna

Robin, I hope I don't come across negatively here, I've always had such a hard time with words and gettign my feelings out.
And I realize we don't know each other very well as I've been away from the board for such a long time.
But here goes....

You, out of all people, don't deserve this. (I mean, noone does of course, there I go already putting my foot in my mouth!)
What I mean is, you are the strongest, most compassionate, most upbeat person I know. You keep gettign lemons and keep making lemonade.
You always take the time to show us the silver lining.
Sometimes I feel that you should be rewarded for being such a positive model for so many.
You deserve a break.

You are in my prayers, and I'll be thinking of you Friday.
gentle hugs my friend

Thank You, my friends...you're always there to support me and it means so much to me. Reading your posts brought tears to my eyes.

I believe we are all strong...we all have our burdens to carry and as a result we learn and grow as individuals. The lessons our "trials" teach us are valuable...we learn what is important in life. True joy for me comes from my relationships.

Mamanan, my reward has been getting to know you all as part of this fibro family. Being able to come here, knowing others understand the frustration and challenges of chronic pain make me feel I'm not alone.

Having that understanding is priceless. I thank you for your kind sentiments...I think we are all worthy of getting a break.

I'm glad to have you all in my life!

Hugs, Robin

 

Sounds like a good doctor. Keep us posted!