Pheochromocytoma Journey for Skye Day 8

The start of the day began slowly.  I talked to a couple of clients on the phone.  I will keep one and try to take on a new one.  But, one of my clients that isn’t benefiting my condition, will have to go.  I can’t afford to extend myself to the point where it’s costing me money to deal with him.  This isn’t the 1st client I had to let go.  After the phone calls I started working on my Daughter Journal.  It is 365 days of motherly advice.  I’ve been working on it for 1yr already.  I’m hoping to catch up on it when my work load slows down.  So, Queens hospital called me early this afternoon.  They said the meds re ready for pick up.  But, when I called my pharmacy, it wasn’t there.  So, I called the hospital and they mentioned to me that the prescription I need is at a Queens pharmacy instead, which is in a awkward location.  I would have to walk up a steep hill and walk down a steep hill.  Not good, I could easily get a spill walking up.  But, I got to do what I got to do to feel better.  So, I go and get it tomorrow.  I probably won’t get a ride, so I’ll get a bus and walk the hill.   Right now, it seems like any movement I do, starts a spell and they coming closer and closer.   Now I know what I got, I notice my symptoms more.  I know more of my swelling, and more of my spells, instead of saying I must be tried or I must not eat anything and that’s why my head is hurting.  No, it’s the pheo.  I’m still on the search for support for my rare condition.  I found a stand up for cancer site on line.  I also found out that they are doing a tv telethon, but when I called the tv station and called the hosp PR dept. not even PR heard of it,  even though the hosp is sponsoring the telethon.  To make a long story short, it’s just a syndicated show and no one knew anything, from the hosp to the tv station.  I found that the cancer is not related to clinic I go to.  There is a bad thing that a lot people or locals do in Hawaii, I am noticing more and more.  That when a local doesn’t want find the answer they don’t know, they think it’s to not answer your question.  I get that when I call the insurance company, when I called the hosp(all the time) and when I call city hall.  Customer Service is when they don’t know. they’ll find out.  Here, you got to tell them to find out your answer that the person should know to begin with.   It’s like when You go to a fast food place and now they won’t give more then one napkin or no condiments unless you ask for them.  They all are taking the fast food attitude and it’s make them all look cheap and bad in my book.  Hawaii should want to have a higher level of customer service in a service related job. Duh*  I have a lot of anxiety over taking the new meds.  I hope I don’t have to cancel my Hard Rock gig that worked hard to get, but it looks like I will, even though I don’t want to admit it.  I wanted clean water, so I thought I would buy a water pitcher with filter, but stewhen I went to the grocery store, it was too high for my taste.  Oh well, next time.  Here is some info on Pheo I found.  Every day I found a youtube link and good info sites.

http://www.youtube.com/watch?v=2ihZICnCQdM

http://www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/Endocrine%20tumors/adrenal/pheochromocytoma.html

   

**email; pheo.n.skye@gmail.com,

For those that would like to only talk about all things concerning Pheochromocytoma.

Check out my short new Youtube blog:  http://youtu.be/CeqIAac_k9I

Pheo Journey for Skye Day 7

 Today started as well as any other day, till I realized that is was my 3^rd Wedding Anniversary.  It was the same drama with the insurance company not approving my medication and the hospital not returning my calls.  You would think they were some  high ranking official, the way they stay unapproachable.  I did get some work in.  I want to work as much as I can before starting the meds, because the doctor said that the meds would make me loopy, too much to work.  I was thinking about being married and how it doesn’t allow me to have covered insurance through Matt’s job.  The benefit to Matt’s job is for Matt only and it angers me that he doesn’t stand up for me and my health situation by demanding equal coverage.  He’s so afraid of rocking the boat, till he will let me go without.  Is that love or what?  I want a love that says “Baby if you need it, you got it, I am there for you.”  For better or worst, right?  I don’t want a trip to Paris or a new car, just insurance.  Is it too much to ask that my Man be down for me?  So, I will take this day for what it is.  I don’t remember getting a card, but I think I did.  What I do remember is going out to eat and going to the Goodwill thrift store to get him a gift of a book.  I guess my gift was Matt blessing with his presence and a dinner out for seafood buffet.  It is what it is.  That night he did what he does best, turn his back to me and sleep.  So, I stayed on the couch till my back hurt, than went to bed to sleep. The only fireworks that night was from a Katy Perry song, cause there was none in my home.  It’s just another day with Pheo. 

**email; pheo.n.skye@gmail.com,

For those that would like to only talk about all things concerning Pheochromocytoma.

Check out my Youtube for this day:  https://www.youtube.com/watch?v=AdCMDO1wVLs  

  

Here are a couple of links I checked out;

http://www.medicinenet.com/pheochromocytoma/page4.htm#what_is_the_prognosis_with_a_pheochromocytoma

http://en.wikipedia.org/wiki/Phenoxybenzamine

Pheo Journey for Skye on Day 5 & 6

Pheo Journey for Skye Day 5 & 6

This Blog covers the 5th and 6th day of my Pheochromocytoma journey the 1st week and beginning a new week on Sunday and Monday in Aug.  Sunday was uneventful.  I did my client/friend, Jamier’s hair and watched tv.  I didn’t go further than 2 blocks from the apt. on Sunday.  I haven’t got my BP meds yet, so I just take a nap when I get a spell.

On Monday, I chased down my money from my Chicago Rasta guy.  I didn’t want to chase him, cause I was having a bad spell that seem to last all day.  He only paid me half of what’s owed to me.  Because I felt bad, I didn’t have strength to argue the point with Rasta man.  While waiting on my rasta guy, I called the hosp to talk to a dr. on call, before going in to the emergency room, which I most definitely didn’t want to go.  The intern I got said that I should come in because she didn’t know what to tell me.  The intern’s answer was too inadequate for me to listen to.  What I wanted to do, is get some  BP meds.  I had to wonder why the hospital would even let her answer patient questions.  It seems to me that the Queens staff is not interested in my health concerns.  It’s as if they are annoyed by my persistence to get help for my condition.  So, after dealing with my rasta guy, I went home to rest.  I took a nap to get rid of the spell.  I haven’t heard from my family, on which one of them will come down.  I’m trying to give them a chance.  It seems that my Mom doesn’t want to come, cause she says that she’s too old, then she said that she had a MRI and waiting to take a CT scan for something the Dr. won’t tell her about.  My Mom says she doesn’t want to do the CT scan till she knows what the MRI stated.  I feel like I want a female to come, cause a woman would be more caring.   So, after a little retail therapy, I went home.  When I got there I had another spell, so I laid down for a while.  I didn’t feel like cooking.  I have been slacking on doing dinner, because Matt hasn’t done the dishes.  Our agreement is, I cook and he cleans.  I clean as I cook, to make the mess less for him.  Lately I have noticed (now I know I have pheo and spells from pheo) I have been using the dirty dishes as a excuse to not cook, because my appetite has been decreasing.  I don’t know why, it just is.  

The Pheo Journey Continues**

Here is the link to my personal journey.

 http://youtu.be/xfq5vsQn8E8