Sunday, September 26, 2010


Yeah....I know, I know...."Hate" is a strong word. It is an ugly word. It is a word I try not to use unless I absolutely have to (I hope that is OK with you, Fr. Seraphim)....but in this case it applies.


Because that is how I feel about this damn illness of mine. It has taken so much from me....and left me so very, very tired....and dizzy.....and feeling as if I am two or three steps behind the entire human race.

Because it limits what I can  and cannot do.

 Because it numbs me.

Because it hurts.....mind-numbingly and breath-takingly hurts.

So I hate it. And I get angry at it. And at those moments I work harder to be not let it take away any more from me....because this is not how I want to live.....I am tired of it taking away from me.

I want to enjoy the life I have, the job I have, the family I have...and the changes that are coming my way.

First of all, I am going to be a Yiayia (Grandma) in April.  Son of House is going to be a da-da....and I am so looking forward to that (Ah....sweet revenge)

And second, as I am writing this, Younger Brother of House is getting married. Yup...finally, he's taking the a nice Ukrainian girl (the same section of Russia as my Grandmother--things have come full circle, no?)

But I am not at his wedding. I am not allowed to travel...not with this stupid illness as a travel partner.....not till "things have settled and there is a balance found between my meds and reaction." So I am not with my family now....not celebrating a major event in the "Tapestry of our Lives"....the only one not there. I could feel sorry for myself...and maybe I do....but I am so full of anger at this illness.....I hate it.

So I did what I could...I called him the day before and told him all the sisterly things I had been thinking....and told him I loved him....and how I knew he would make a good husband....and wished him as much joy, happiness, and laughter as I have in my own marriage...and laughed with him....and expressed how sorry I was that I could not be there (he was understanding - of course).

And then today....just moments before his big event, he took the time to text me and call me...that was his attempt to make me feel a part of this. We remembered old events and times....we laughed....and I told him I would always be here for him (I know he knows, I just wanted him to hear it)...and then let him go and start another chapter in his bring another member to our little await the pictures that will be emailed to me.....

Have I told you how much anger I feel towards this illness? Have I told you how much I hate it? Because I do....I really do.


margaret said...

Oh, Nina, I am so sorry you can't be at the wedding. But I am glad you're going be a grandma.

You have my prayers that you get better soon.

elizabeth said...

So sorry to hear. This is hard. I pray you can get better soon too.

Christina said...

Oh Nina! I am very sorry. That really stinks.

But Nick?? Married?? Wow, I'm so excited for him! Please give him and his lucky bride my congratulations!

Louise said...

I just found your blog. I too have a myeloproliferative blood disorder, essential thrombocythemia. It's good to find others with this condition, but I wish I had met you thru anything but this condition...if that makes sense. I will check on you regularly, hopefully to gain more insight into what we have.