Summer 2013 Update

Hello everyone, Happy Summer to you!

I’ve had some requests for an update. So here I am. Thank you for prompting me, as I do not seem to be good at doing updates on my own. I appreciate everyone’s care and love to get me off my bum and get one out to you.

Health has been quiet overall recently. This is one of those “no news is good news” kind of things. (Well, besides not getting “the call”, that is.)

I did go for testing in Minnesota in February to get on their transplant list. This was another act of pro-action. I was feeling pretty out of control, and helpless, waiting and waiting on Denver’s list and not being able to do anything; I finally realized, “There is one more thing I can do!” And that’s when I sought getting onto the MN list. (Yes, you can get on more than one list if you go through the steps.)

The testing was three days this time. A few red flags were thrown and extra procedures followed, but to cut to the chase, I did the things they said needed to be done; but this all took time. All the items took until about two weeks ago.

So here we are now; two weeks later; I’ve been chatting with MN off and on; but they still haven’t listed me. This is a point of frustration. I keep getting told this and that...but in the end, there is nothing I can do but keep talking to them. I hope to be listed soon.

In the meantime, I remain on Denver’s list. That is a waiting game that can seem endless; I have finally, after over one year and four months of being listed, learned how to not jump every time the phone rings. I have finally learned to just keep living life normally without it being on my mind constantly.  Oh yes, there are days when it seems to consume you; but those are fewer and fewer right now – though I think that is mostly helped by health that is hanging in a positive place right now. This leads me to the other thing that has transpired over time; 2013 has been a MUCH healthier year for me than 2012 was. So I have been doing some activities I couldn’t do last year. That’s the funny thing about CF. It can be so up and down, up and down. So you just work as best you can through the down times, and be thankful for all the up times.

So during this up time, I am happy to say I am of more help around the house again. As silly as that sounds, there is something to be said for having the energy for doing dishes and doing other household chores, let alone a few outdoor chores too. But more so, I have been monitoring my health carefully so I can work on theatre projects as well. I have several things lined up in upcoming months; some are at work, some are outside of work…I am grateful to do all of them. And I hope my health keeps up through them all. But I have convinced myself at this point, that it HAS to be mind over matter. It just HAS to be. I gave up too much in 2012; my mental health is bound and determined to make up for it all in 2013!

I hope the next time I give you an update, that it will be because of one of two things; that either, I am added to the MN list, or because Denver has called me with new lungs.

Don’t forget everyone, my campaign is still alive; you can still go to my cota site to donate; or if you can’t do that, we still collect old cell phones and printer cartridges for recycling and that helps my campaign. All the information for these things is on my cota link. www.cotaforlaram.com

Be well, everyone!

Priya

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