Skye N Pheochromocytoma
Journey
September 4, 2012 *Day 14
September 4, 2012 *Day 14
Labor Day was
relaxing. But, it still has been a trying week & I felt the only way
I was going to get any answers was to go my doctor’s appointment. I
called my family this week, seeking support. When it comes to my family
and Matt, I am coming across a lot of disbelief, as if I must not have a rare
disease & I don’t sound like I need surgery. Why must I die to prove
how serious my condition is? Matt’s unwillingness to read the material I
give him on pheo is getting hard to take. His only level of concern he
has is only over how this is going to affect him, instead of how he can
comfort me through this difficult time. It’s totally heart
breaking. You know, this says a lot about who he really is. Being
so close to the surgery date is incredibly hurtful. But, no date has been
set for the surgery. The doctors say I need to be operated on immediately
to remove the tumor. For Matt to not even look up from his cell to grab
the pheo info & tells me to lay it down, made me want to smack him with it
& yell, “Fucking care about me. This is real to me & I am scared
to die!!” But, instead I walk off to the bedroom & lock him
out. I get nothing close to the amount of support that I should receive,
which only makes me feel like my life has been for nothing, but I don’t want to
feel like that. But instead, I feel forced to feel unsupported and awkwardly
loved. I called Matt’s sister and told her of my concerns over Matt’s
substance abuse, during a time when I’m scared over my serious health concerns
& having more spells. The spells has kept me more close to
home. Because, if the spells come on, I feel like I’m ready to pass
out. I even see dots in front of my eyes when my head spins. When I
walk down the street and a spell comes on, I imagine myself passing out on the
sidewalk with my butt up in the air, while hitting my head on the
concrete. I’ve been having spells for years, since my twenties, but now,
I can’t shake it off. These spells demand my attention. I never
knew it was the blood pressure from the Pheochromocytoma. I really need
this medication to work. Because, the spells make me want to lay down
anywhere I am when they happen. The last time I went to the store, I had
to sit & rest my head before coming home, which took an hour to
overcome. Back to Matt’s sister’s response. Matt’s sister mentioned
that she basically didn’t have time to be involved. So, I thought to
myself, “Ok then, I’ll remember how you are & what you really feel about
your brother. She doesn’t allow herself to be involved in her brother’s
life, except for the occasional holiday event or when it suits her.” Believe
me, I will remember too, if I ever get over this.
I bought a bike a couple
of months ago to not just get around, but to lose weight & decided to ride
it to my appointment. I was to meet my Endocrinologist today and find out
when my surgery will be. I have so many questions & feel very
anxious, like an eager young med student that wants to learn & know
everything. Didn’t feel the need to take my medication, till I talked
about it with my doctor. Bringing the pills with me would give me a
chance to ask more questions about the medication & show it to them.
To show the pheo pills to the doctors, would prove I have the right
prescription. It’s a take a number & take a seat approach to clinic
medicine at the Queen Emma Clinic. Just like the hospital places the
clinic in rear of the hospital, I feel I was placed to the rear of
service. I came somewhat early for a 9:30am appointment that turned into
10:30am, that didn’t allow me to be seen till 11am. It’s not the VA, but
I know if this is a life threatening condition I have, the administration
(clerks, reception girls) sure don’t treat you like you have one. I feel
the anxiety over symptoms that Pheochromocytoma can cause, like heart attack,
stroke, or death at any moment. This has been the only thing on my mind
lately & will be till I have my surgery and my spells has ended. So,
I finally get put into a exam room to wait. It’s freezing in there, I should
have brought a sweater. They sent in an intern resident doctor in
training to talk to me. The intern couldn’t answer my questions.
So, the intern went to get the regular doctor. I knew that Queens Clinic
is a teaching school. The teachers & staff must be proud to get a
pheo case. It must not be often that they get one, so, I should have
their best doctor or at least think that. We’ll see if that’s the
case. When I finally got to talk to the Endocrinologist, I found out
quick that he didn’t have a clue about my medical file or my condition.
He made me feel more confused & gave me more questions to ask. I was told
that they didn’t know when my surgery would be. In regards to my
medication and the doctor increased my dosage to 2 pills a day instead of one
per day. It frustrated me that the doctor kept saying that they didn’t
know & ask your other doctor. Is this ping pong or what? This
pass the buck on answering questions wore thin with me quick. It wasn’t
long that my mind had me thinking that it was the insurance company, Aloha Care
may be holding it up. I am sure it’s a costly surgery, due to it being
rare. So, when I got home I gave the insurance company a call.
After a long run around & pulling the needed information out of the
customer service agent, I found out that it took 3 weeks after my diagnosis for
the request for the surgery had been made on Aug 24th. There
has been no response that has come back with the approval from the insurance
company. Very frustrating to hear. I don’t know the truth behind
the hold up, if it’s the doctor or insurance doing the hold up. I called
the clinic to ask to speak to the doctor or try to get her to return a call and
they kept telling me about my next appointment on Wednesday. So, later in
the day I called my mother and vented a little. The presidential election
is in full swing. So, I watched a little of the spectacle on tv. Michelle
Obama was speaking on the podium tonight. She seemed like a woman that
has it all together. So, I was hoping to hear words of inspiration for those
needing a better health care system to evolve. I heard good stories of
those in need, but no answers to what should be. Well, I enjoyed seeing her
strut & show off her cute outfit while seeming to be a black woman with
grace & heart. I don’t know if the big wheels behind the scenes are going
to allow the needed changes to our broken health care system. I
volunteered in the early grass root days of 2007 in Hawaii for Obama and went
to the local Hawaii State Democratic convention in 2008. So, I was hoping
to hear something more uplifting. It was a nice speech, but more fluff
and less hard lining answers to solutions that are hurting the majority, like
quality healthcare and the fact poverty is taking over the nation. Michelle’s
talk left me empty and without the hope for the future that I needed to
feel. I don’t want to turn to my friends with my health and martial
burdens. I’m hurt by one and embarrassed by the other. The only person
I could open up to is my mother and she is full of her own health
troubles. But, all I know we need more than words & wishing things
get better. I think I’m going to try to see Dr. Onoba soon, to get some
badly needed answers to my pheo.
Today’s
Youtube: http://youtu.be/C3xYbOwacKc
Here are some videos & links about Pheo
& it meds:Call Queens Cancer Center & ask why they don’t take Medicaid or Medicare???
I’m serious when I say I’m going to look up my doctor & you can too in HI.
http://queensmedicalcenter.org/find-a-doctor
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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