Curly Hair

I think I may have found the best side effect ever, and I hope it never ever ever ever (i'm really passionate about this one) goes away.

my hair is starting to have an every so slight curl in it. WHAT. Yes, you heard me...errr read that correctly. After I take a shower I always air dry my hair. For the past 25 years of my life my hair has been straight no matter how much I would try to curl it and hairspray it so ferociously that it would be crispy.  That however has all changed after air drying my hair last night it had a few luscious gorgeous tiny waves in it.

I am basically freaking out over here because I have wanted some sort of movement to my hair since forever and a half ago. So I only wonder if it is due to the Revlimid or maybe because I am missing a part of my chromosome. I don't care what is causing this change to my hair its welcome to stay forever.

I mean with all that said it is as straight as a line the instant I put a brush through it...

Now I think the side effects need to stop coming and I would be happy! Curly Hair and Happy.

I am on my 2nd week of no medication as my white blood cells are still low. They are making their way up to the normal range but just nice and slow.  My red blood cells are going crazy and are continuing to get closer to the normal range even though I haven't been taking the medicine. WOOT WOOT. Lastly, my platelets dropped a little. Let's just hope all my fighters keep doing their job and go in the right direction to make me 100% for my trip to Barcelona in 10 days!

and in 5 days I get to reunite with my man!!!

Yeah for no more FaceTime!!

oh and I get to reunite with all my glorious wonderful, supportive amigos 

Frustrations UGH!

Last night I spent a lot of time searching online and looking at forums, websites etc and it just started frustrating me to no end. After searching it felt like probably every forum that there is and not one of them had anyone my age talking about MDS.

Yes, I know that this is a disease that affects mostly 70+ year old men. I thought at least I would be able to find one other person on a forum that was going through it at my age, preferably a female but hey! I won't get too picky. seriously every single person on these forums was OLD. All the information I can read about my disease only really pertains to people over the age of 50 or for little kids who have a different form of MDS.

THERE ARE NO MATERIALS FOR YOUNG ADULTS!! ok, yes I should know this and expect this since my Dr. has only seen a handful of patients that are around my age, but I would think I would be able to find something/someone (one little tidbit) online. I mean come on the internet is HUGE! (hahah).

So those are my frustrations right now and maybe I can do something to change the resources out there.

My searches and internet roaming was not a complete loss. I found a lot of websites that support Young Adults with any type of Cancer like Stupid Cancer.

I also found that the Leukemia Lymphoma Society (LLS) , which cover MDS because not sooo long ago MDS was called Pre-Leukemia, is the organization that has Team in Training for a bunch of 1/2 marathon runs etc. They also have a big walk in October called Light the Night Walk.  So everyone put October 26th into your calendars as I am going to make a team :) and we are going to wear shirts like this:

aren't they amazing? I need one of these shirts like NOW and if you want one (they come in all different colors for all different cancers!) go here Fuck Cancer Shirts

So in the end my searches helped me find a lot of positive things out there but that underlying frustration is still there!