Saturday, February 11, 2012

Waiting Patiently

It's been almost two months since I last made an entry on my blog. I don't know where to jump in - so I'll just take a plunge. It seems there's always  got to be something going on with me. I can't just have a block of time where I'm feeling at 100% and not worried about some mystery medical problem locked up inside my body.

I moved through November and December like a Slow Loris, (just not as cute) and in January I was told why.  I now don a Medical ID bracelet engraved with my new label,  'Adrenal Insufficient'. My Pituitary Gland was short changing me in quite a few departments, although Adrenalin, and Cortisol are the ones I'm missing most. It's been a real struggle trying to figure out how much medication to take, because my body's trying to spurt out some hormones, but just failing to get it over on the plus side of the zero mark.

 I had to switch from Hydrocortisone to Prednisone, which at first I thought was great! On the Hydrocortisone I was getting a feeling that my skeleton hurt. I know that's a strange thing to get across - but it wasn't muscular or joint aches, it was much deeper. I felt like October's party-shop skeleton put together with creaking eyelet hinges. I had to keep a stringent schedule of pill popping, and if I missed one, I'd start to crumble and crawl to the floor around at three o'clock in the afternoon.

When my endocrinologist changed me over to prednisone and I had about two weeks of bliss! I even did a free two-week trial at the YMCA - feeling good and strong! But on my birthday I had a terrible feeling of shortness of breath, pressure in my chest area, and general discomfort. I called my doctor immediately and explained I was having these feelings again. We had talked about this previously, and she said it was most likely a side-effect of either the prednisone or the thyroid medication I've been taking.  She always asks me if I'm having heart-attack symptoms! I'm sure it's not a heart attack, because the feeling doesn't come on until after I've taken my drugs. I talked my doctor into cutting my doses in half, because I felt better that way.  I went on like that for a week - but on my next vist to the doctor I found that I was falling way below the 0 mark again and had to up my doses. My labored breathing and chest discomfort hadn't lessened and my doctor talked me into going to get checked out at an Urgent Care clinic since she wasn't able to fit me in that day. I really do try to take doctor's orders seriously these days - and I really respect my endocrinologist, so I went. Unfortunately, when they did an EKG, it came out suspect, and I was urged to go to the emergency room for further tests. Of course I didn't want to go - but right at that moment my endocrinologist called me- I passed the phone off to the attending doctor and they concluded that I should go to the emergency room. What a DRAG!!!! I drove there, wondering where I should park. Do I park in the garage, and walk in? Do they have their own parking garage that's closer? I took a chance and just drove up to the door. Voila! They have valet parking - a good thing for people with suspected heart-attacks!

I had five EKG tests within a 13 hour period. Every time, I'm telling them that it's not my heart - it's my medication! They had me inhale radiation for a lung test, looking for blockage and to monitor my breathing abilities. I had a blood clot test. There were no conclusions to my symptoms from these tests. They really wanted to keep me in, and have me admitted, so they could run a million more inconclusive tests. Every hour or so a doctor or attending nurse would show up to stand over me and my many wires, to say they didin't know why I had been feeling the way I had, there was no reason for it and they were ruling things out one by one! They kept telling me I should be admitted, because they had many more tests to do. It seemed every other word that came out of their mouths was 'Heart-Attack!' -  And I was feeling like I was going to have a Heat-Attack from them scaring me. I finally agreed, adhering to their words 'better to be safe than sorry'. So, about 20 minutes later an oncologist came in to give her 2 cents worth. I'm glad she did, because she looked at my thyroid results and said I was most likely having a reaction to my medication. I was released at 2:30 am! Geez! Where was House earlier? I would have been out'a there within the first 2 hours!
My Medical ID for Adrenal Insufficiency

My Medical ID for Adrenal Insufficiency
disguised as a charm bracelet - notice the budgie charm in Glen's honor!  The Anchor is in Stacy's honor!
I'm still having all these terrible symptoms - but at least I know I'm not dying. Evidently it will take about 4 months to get conclusive results about how my pituitary is working and what exact medication dose to take. I'll also be having a new PET scan, on Monday at 1:30 -  which I'm a bit wigged out about. It'll tell me if there are any new cancer cells that have gone wayward, and may shed light on the reasons for my shortness of breath.

If you all can put out the vibes again for a good result I'd appreciate it so much! I do appreciate you all so much, for keeping me going  - it helps so much to know that you all care. I want to thank all of you that have put on benefit concerts, and all of you that have donated to my fund. I want to thank all of you that have benefits planned in the future - it helps so much, on so many different levels! I can't even tell you what it all means to me.

I also want to mention a few other things here as well!


I've been doing lot's and lot's of watercoloring, and have put everything up on a new blog called:

Letha's Funtime Watercolor Paintings And Other Art

And here I want to say a few words about 
WFMU !!!!!!!!!!

I'm a huge fan of WFMU, as I'm sure a lot of you are too! For all of those of you that don't know WFMU (who couldn't possibly know!??) - WFMU is the best, most amazing, independent free form radio station of the world! No kidding! It's the longest running free form radio station in history  - it started in 1958! That's a lot of years of bringing such diverse fantastic music! It's the best way to find out something new,  you didn't even know you liked! 

I remember my first time playing live on WFMU, it was a blast! And Dan has played more recently on it and it's just great! (When Dan and I first got together, [in like 1999] he was doing a WFMU live show - I went to the drug store and bought a cheap transistor radio so I could listen to the show in Stuyvesant Town Park.) 

I just love WFMU!

Well, we have to keep it going, and the only way to do that is through listeners support.
Wouldn't it be great to be lumped in with these notables?

(taken from Wikipedia)
'Other notable fans and supporters of WFMU include Neutral Milk Hotel frontman Jeff MangumKurt Cobain,[6] screenwriter/director Ethan CoenMAKE magazine editor-in-chief andBoing Boing co-founder Mark FrauenfelderLed Zeppelin lead singer Robert Plant, musician Suzanne Vega, artist Cindy Sherman, indie rock superstar Ted LeoSonic Youthguitarists Lee Ranaldo[7] and Thurston Moore, comic book artist and writer Evan Dorkin, film director, producer and actor Kevin Smith, musician MobyThe Cars vocalist/record producer Ric Ocasek, musician Max Tundra, television talk-show host Conan O'Brien, comedian and broadcaster Phill Jupitus, and Blixa Bargeld, singer of the German bandEinstürzende Neubauten.[8]'

The annual pledge drive is coming February 20th - March 4th. You can get some cool swag (like a Dan Melchior designed shot glass - with Glen on it!) if you pledge. Look at it here:

WFMU Marathon Swag!

AND: It's always a good thing to pledge during Brian Turners show (You'll be hearing the craziest, best sounds while you choose your swag!):

Brian Turner

Tuesdays 3pm - 6pm on WFMU 91.1 fm 90.1 fm


And lastly, a friend of mine, David Haas, is a staff writer at The Mesothelioma Cancer Alliance Blog. He's written a great article on the importance of exercise during cancer treatment. 

It's true! I'm trying to exercise as much as possible, and when I do I feel so much better.

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