Skye N Pheochromocytoma
Journey
September 5, 2012 *Day 15
September 5, 2012 *Day 15
I woke up this morning
out of sorts. I had a dream that didn’t end right, before I got out of
bed. I’ve been having these dreams every year since I lost my daughter,
Amanda. In the dream, I always lose someone I want to be near. One
second they are there & I’m the happiest person in the world and I walk
down a hallway, then they are gone. In my dreams people I love disappear
and they never come back into my dreams. This type of dream leaves me
feeling blue when I wake up. So, it’s one of those mornings, were I feel
what’s the use of trying, but I’ll make it through anyhow, type of day.
I’ve been very emotional recently, due to the fact that the doctors
aren’t making me feel my odds are good for overcoming pheo.
I assisted my last
client, Wade. He called me just in time to bring me out of my funk.
I helped him in getting his fiancé into America from the Philippines. I
told him I would assist in planning the wedding on a budget of less than
$500. His fiancé was due in soon, so I gave a hand to cleaning the
house. We picked up a rug cleaner today. I cleaned his place for a
couple of hours. After the wedding I will have to stop working to get my
bp in order for the surgery I need. I got paid cash for my work & was
given a ride to my doctor appointment. I might help finish up later. Even
though the doctor said to stop working, how can I earn money for the things I
need. Matt has not given me a dime since he fell off the wagon.
It’s Wednesday,
September 5, 2012 & I had a doctor’s visit yesterday that lead to the
additional tests being taken today. I saw the cardiologist at the Queen
Emma clinic, then later I was sent to another building to get an EKG at the
Queens Heart Center. I have to come in every week now, to Queen Emma
Clinic to turn in my blood pressure readings to Kelly to see where my levels
are at. Ever since I got my bp cuff, I have kept my readings on a
calendar. She acted impressed by my calendar method, as if it’s
new. I know people don’t write it on napkins. It amazes me how some
people are surprised by poor people, as if they should be dumb. It would
piss me off, but I don’t have the time. The BP readings are to let me
know when the time is right to do the surgery. Coming into the clinic for
testing gave me the opportunity to ask more questions to the doctors, if they
are willing to talk. It seems to me that they keep their answers short
& general. They seem to answer my questions so well, without giving
any real answers at all. Doctors must be taught to talk that way. One of
the doctors told me of the difficulty getting the blood pressure cuff as a
prescription. The doctor explained that a bp cuff isn’t usually allowed
as a prescription, as if I should be grateful. I am grateful, but the
doctor, medical provider, & medical equipment company all gets paid.
No one is curing my disease for free. I’ve worked since I was 16yrs old,
and now it’s time for my tax dollars to give back, is the way I see it. I
didn’t want all my hard earned tax dollars to go toward wars and bailing out
corporations. Our tax dollars should be given back to those in need as a
safety net to society’s ills. See, my attitude doesn’t fit what most
doctors expect from patients or what interns are told how a patient should
respond. I refuse to take whatever they say as truth, because a fetal
disease is supposed to keep me in fear to the point where I automatically leave
it in their hands to do whatever they feel is best, without explaining it
fully. Bullcrap* Not me, that’s not how I roll. I must & got to
know my chances to survive and if all measures are taken into account.
One way of knowing is by researching my condition and internet searching my
operating doctors. I tried to get their names to do so, today. I
got to see the cardiologist & get a MRI/EKG before I have surgery. I
was sent to the Queens Heart Center for a checkup and testing, but they were
booked tight for EKG appointments. I really needed to do some quick
talking to try to get a canceled appointment spot. If not for the kindness
of the receptionist, I would have ended up with an appointment in
October. That would be a little more than a month away. I needed to
continue my day and helped out Wade a little more. When I got home, I
cooked a light meal. Matt, my husband, once he came home and got lost
into his cell phone. He usually has a drink after work, at work with his
work mates. He doesn’t seem to be willing to deal with my pheo.
Matt removes his self from any conversation I try to have about the subject.
He acts as if he’s annoyed but the discussion of it. I want to think he’s
going through denial, instead just being non supportive. It’s really has
been messy with me emotionally that Matt has been so distant to me, instead of
more supportive and tender in his caring of me. I am still waiting on
family in TX to see if someone wants to come down for the surgery. I
asked my best friend, Scott in KY too. No one knows if they can come to
Hawaii. A last min ticket would be a fortune from the mid-west to
Honolulu. Mom couldn’t come if she wanted to, cause she is recovering
from ovarian cancer. After resting in for the night, I gave Moma a call
and told her of my troubles and how the doctors never properly answered my
concerns. It was good to talk my problems out to someone. Bottling
it up makes it worse than holding in your frustrations. It’s 5 hrs. ahead
in Mom’s state, but I call her anyway. I got to watch some football,
which I’ve loved since a child. I have been collecting football cards since
I was fifteen. I only got to catch half of the game, but that’s better
than no pro football at all. I still collect football cards, but not as
much lately. These days I just go to sleep to tv sitcoms, then Matt joins
me later. Oh, well, another day is another day with Pheochromocytoma. It
can only get worst from here one would think. But I’m hoping for the
best.
Today’s Youtbe: http://youtu.be/fOI_9U-EJvk
Here are some videos & links about Pheo
& it meds:http://www.mayoclinic.org/diseases-conditions/pheochromocytoma/basics/definition/con-20030435
Good explanation
https://www.youtube.com/watch?v=nolAeOpfpWY
If you would like to talk about Relay for Life
or anything about Pheochromocytoma only, email me at; pheo.n.skye@gmail.com
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