Friday & Saturday of September 7th & 8th, 2012*
(Notice under what procedures they do, Pheo or endocrine is not listed*VERY SCARY that they could have operated on me)
Today I am supposed
to go to the Clinic. It started to look
like my options from Queens Emma Clinic seemed fatal. I decided that I need to keep records about
my condition and cover everything these doctors are not saying. It’s part healing and a part covering my back
writing about it. So, that morning, I
started a blog page on Blogger called; Skye N Pheochromocytoma. Sounds direct & I like to keep it direct and
straight forward, because I know I’m writing the facts as I experienced
it. I call each blog, “Pheochromocytoma
Journey for Skye”, cause that’s the way I like to look at what I’m going through. I also started a new email account for the
blog too, called, pheo.n.skye@gmail.com
along with a youtube channel under the same name and another email for SkyeTheSoulPoet@yahoo.com,
all before going to see the Doctor. My
computer was running on low speed. I
will work on that. Starting the web
accounts made run late. I had to wait
anyway, because it’s a take a ticket after typing in your name system. Then the admin clerk calls you by your
number. On the day of my diagnosis I
video taped the start of my Pheo Journey. I made Matt to tape it for me. Now, I think I have enough video to start a
blog. I am hoping by having the video I
can remember what happened easier. If I
don’t do the blog in a timely fashion and take my time, it will suffer. Something tells me that this blog writing is
going to get pretty emotional for me.
When you relive what you are going through in your writing, it can get
very emotional at times. When I got to
my number called, I had a PA(physician assistant) take my vitals. I should know what to
expect from a university based clinic. But, it’s hard, with a BP of 189/96. I wanted to talk to Dr. Janet. I couldn’t get her to return my calls. I went to the clinic to take a BP
reading. I show them my calendar I put
my BP readings on with time of each reading.
The nurse said I keep good records.
That was good to hear. Then I thought, of course I do, it’s important to me.
I realized that I had to start getting on line & finding my own support. Calling my family wasn’t gaining any support.
I found out on my own that the local
American Cancer Society of Honolulu would supply me with rides to doctor
appointments and tests. I didn’t use
that service often. I bought a bicycle a
couple of weeks before my diagnosis to get in shape. The clinic was so close, till I could walk or
ride my bike there & get there within minutes. I went home to deal with Matt’s disturbing
ways and deal with more of the same from him on Saturday. At least he goes off to play a gig on
Saturday nights. So, I could have my night
free to relax. I have a lot of stress,
dealing with this pheo & doctors that don’t care about my health outcome. At least that’s how I’m taking it for right
now. To get a non-supportive person
telling me that my problems are upsetting him and listen to how he doesn’t want
to help, hurts very much. But, I must
move on and start finding my own cure.
Now is the time for me to realize that I’m not going to have the level of
support I feel I need and get over it and motivate myself into overcoming this
journey on a positive note. So, on
Saturday night I watched a movie and colored my hair. I opted out of going out to a nite club to
buy a high priced non alcoholic drink.
The old movie flick from my late twenties put me in a more upbeat
mood. I never cried to that movie
before. But, I guess with all that I’m
going through, any movie would make me cry at this point. Even a comedy made me cry. After coloring my hair, I retired to my
bedroom to go on-line & find out more info on Pheo and how to get another
point of view on my pheo tumor. I’ve
been looking at Mayo clinic & think I should call them. I am thinking of checking out some test trails too. I tried to go to sleep before Matt comes
homes. He has been sleeping in the
living room these days. I have a 4th Friday open mic Poetry
night coming up that I planned to have before I got my diagnosis. I do Spokenword to music and sing blues. I enjoy motivating others to bring the best
out of themselves and stay positive.
But, ever since I got married, it seems to it’s been one issue after
another that is pulling on my positivity. From getting screwed over doing all
the logistics of a festival, that rewarded no monies promised to me, to the lack
of support from a husband that clearly has fell off the wagon & refuse to
admit it or do anything about it. He has
a gig coming up on Sunday, maybe I’ll go.
Please take
the time to check out my links that I found useful in getting information on
Pheochromocytoma and the research clinics I found. There may be one link for you that is still
doing research and accepting patient for surgery & treatment.
Today’s Youtube: http://youtu.be/SmgGlX3KoMc
Here are some videos & links about Pheo & it meds:
I’m serious when I say I’m going to look up my doctor & you can too in HI.
(Notice under what procedures they do, Pheo or endocrine is not listed*VERY SCARY that they could have operated on me)
If you would like to talk about Relay for Life or anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com
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