I'm new here......

[annmonster]

Hi everyone .....

I am so glad to have found this message board today !! I am an MDS/CMML patient as of 5 months ago..... have had three 'rounds' of Vidaza.... currently am having to transfuse every 2 weeks..... am hoping that treatment will change that soon.

I am a 59 year old female.... and still just trying to figure this whole " thing " out ....so, hopefully having people like you guys online will be helpful !!

[cheri]

You have come to the right place! There is lots of great information and awesome contributors on the site. Also, the ups and downs of MDS will confuse and frustrate you at times, but usually, someone on here has been there already. Keep the faith and hope the Vidaza is effective for you!

[Greg H]

Hey Ann!

Welcome! Cheri is right. There are lots of great folks here (and Cheri is one of the best at cheering everyone else on, not to mention modeling what courage looks like).

You can share whatever you like, or as little as you like, and above all, ask any question you like. So many folks around here have been through so many therapies that you are bound to find a partner in crime.

I hope the Vidaza is working for you.

Take care!

Greg

[annmonster]

Greg and Cheri....

Hey, thanks for making me feel 'at home' here..... : ) . I have already discovered that MDS is a very confusing up and down roller coaster ride...one that not too many people in my life truly understand.... so it's great to have some 'company' !!! : )

[DanL]

Ann,

Welcome. I think you just mentioned the first up and down. Family and friends. While they want to know, they don't want to know. As long as you look good, they don't understand the battle that your body is fighting each day.

There are a lot of really good people on the site that are always willing to help answer questions or provide support.

Good luck with Vidaza.

Dan

[cheri]

Thanks, Greg, for the compliments!
Annmonster--Greg is way too smart for me! He really knows the ins and outs of everything....

I only wish I had known at the outset that MDS was more of a journey than a diagnosis-- I would have fretted less. Runaway train sometimes--other times a slow ride....I just live week to week.

And if I had a nickle for everyone who said: "But you don't look sick"....I'd be sitting on a BIG pile of nickles!

[Neil Cuadra]

Originally Posted by cheri

And if I had a nickle for everyone who said: "But you don't look sick"....I'd be sitting on a BIG pile of nickles!

That's true for a lot of MDS patients. People they meet may not realize the seriousness of an "invisible" disease and can't easily appreciate what patients go through. For example, they might treat a coworker's fatigue as laziness.

However, there's a bright side too: With MDS you get to decide who to share your health status with. You can explain the details to people close to you, or people who ought to know (that coworker who thinks you are lazy), but strangers will treat you just like everyone else. There are probably people with birth defects or diseases like psoriasis who wish they had a nickle for everyone whose first impression of them was "sick person".

There's just no good way to be sick!

[annmonster]

Yeah, I get that a lot as well " you don't look sick ! " ...... I always quip that it's my make-up !!!!...... tons and tons of make-up .... ( kidding !! ) . I love your philosophy, Cheri ..... one week at a time..... not a diagnosis, but a journey ....
sounds like MDS has taught you much about life.... I admire that.... !!!

And Greg....wow ! Totally done all the research ....were you a Dr. in your pre-MDS life ???

Have a great day everyone !!!

[mausmish]

Welcome! You've definitely come to the right place. Before my transplant, I didn't feel ill so wasn't surprised by the "you look the same as always" comments. But after the BMT, I found it ironic that everyone I saw told me how fantastic I look. Funny with my splotchy skin, bald head, and swollen eyelids. I found myself wishing I didn't have to go through so much for all the compliments and how nice it would have been to hear more of them before I got sick, lol. Always keep your sense of humor - it's absolutely essential.

[cathybee1]

Welcome, Ann

This group will give you amazing support and help you keep your docs honest...they will cheer you on, and give you a hug when you need it. And questions are definitely encouraged.