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

Pheo Journey for Skye Day 4

 I felt better about my situation on Friday, but then Saturday came.  At first, I was hopeful about getting up early.  All I did the night before was sleep.  My feet didn’t look swollen, which I use as a indication that my BP is high.  When my BP is high, the light headed dizziness is a hint too. Sometimes, my fingers and arms go numb and tingle.

Ready to take on the day and get paid from my Rasta guy was the plan for Saturday.  Then, I would go home and work on my Pheo dairy and daughter journal.  It seems like I’m just collecting videos.  Not so sadly enough, my Saturday went weird and ended reflective.  First, I locked myself out of my home.  Matt took on a rare Sat. work gig, doing landscaping.  He wouldn’t return till 4pm.  Second, my Rasta guy didn’t show. 

So, I didn’t get paid.  I went over to Jarvis, a young friend of mine.  I feel I rely on her for support too much.  As a young person, under 30, your life shouldn’t be caught up in a person’s life with a serious condition such as mine.  Sometimes, she feels like family, but she’s not and I should not put more on her more than I would expect from my own family.  Jarvis’s well appreciated support got me to thinking I need more family support.  Later that day, I got a call from my cousin, Ralphie.  I was in the middle of doing some retail therapy, when Ralphie called to ask questions.  He told me that I would be the one in the family to get a rare disease.  Ralph said the family in Texas is down for me and will find a way to be there for me, because we’re family.  The moment felt like a episode of "Soulfood" that use to be on one of those cable stations I could never afford to watch.  But, I do keep up with good ethnically cultural based acting.  I don't believe in over watching tv.  Matt finally called me when he got home.  But, by the time I got home, my BP was up from all the walking.

I don’t know what it was, but it was very high, cause my head was hurting and my feet looked can hams.  I started to tingle all over and I felt like I was going to pass out, so I laid down and took a nap for 3hrs.  I got up feeling better.  That's what they call having a spell, in pheo world.  I eat a normal meal, cause I really didn’t eat much, except a little shrimp fried rice.  I eat all the shrimp, then put up the rice.  So, after feeling better, I played dress up and went to the mall to shop for a frock to wear to the hospital.  I found something on the clearance rack at Macy's and had a discount coupon from Jarvis.  I have my Mom's nack for finding clothing items for less than $10 or $15 at major department stores.  I found a pair of designer slippers for $3.(big steal of a deal)  I felt that by shopping I would feel better about having the surgery that I fear so much.  I’m trying to not let it show, but I know I won’t be able to hold in my fears for too long.  When I came home, Matt was sleeping.  I got on the net and found myself watching a very informative youtube from some young man explaining the history and defining pheochromocytoma.  Even though the film was low light and clearly out of a young guy's apartment, he explained himself in a way I could understand. Check him out; http://www.youtube.com/watch?v=tSO-Rtd_2nM

Pheo will wait for another day.

Here is my Youtube; http://www.youtube.com/watch?v=5t_Yuy9vg28

Pheo Journey for Skye  Day 3*

This morning started off good.  I’ve worked with my client Wade yesterday and got paid for doing some cleaning, cause he kicked out his room mate.  The first thing I did was to go to the DHS office.  I talked to a office manager, who said that she understood and would reinstate my disability interview appointment with the doctor.  So, I felt good going into my psychiatry appt., till I talked to them.

They first sent in an intern resident.  Queens Hospital is a teaching hospital.  I told her that I was not comfortable talking to her, after her asking me about my drinking habits.   I said “Really”, that’s not my issue.  My issue is your staff and me not feeling safe in your hands.”  What looked like a little girl to me, then mentioned that drinking is what Dr. Janet said I had a problem with.  I told her that the Dr. was wrong to say that and to immediately correct that from my record.  She left and came back with two more people without introducing me to the other intern.  The professor or the real Dr. seem to be full of attitude and unwilling to listen to me.   He came in and started asking me about shaking and waking up in the morning drinking.  He sat down and slumped in his chair as if he was a kid.  I basically told him he was more than wrong and was taking the conversation in the wrong direction.  I said, we should be talking about my fear of  hospitals and dying in one.  He then told me, my issue is with the hosp. and I should go to another Dr. outside of Queens Hosp. and left.  I felt like the visit was a big waste of time.  I really didn’t like the fact that they get paid for not doing anything to help me.  What a crock.  So, I paid a bill and went home.  I wasn’t going to let a bad Dr. visit ruin my mood.  Today is Aloha Friday, so I feel like going out, but I don’t have anyone to go out with.  I like to dance in my bedroom to music and change my clothes.  As a woman, I enjoy playing dress up.  I’ve been playing dress up since I was a toddler and haven’t stopped.  I like trying on clothes, dancing around my room to the and latest beat and think I’m a better dancer than J-Lo with my moves like Jagger. Even if I can’t change my condition, at least it feels good to dress up, put on makeup and

hear a good tune with horns in it.  Today, you don’t hear horns like you should in music.

I seriously miss live bands and good live music, which I feel is seriously needed in today’s society.  No one can afford a big band or is everyone a loners?  Is loner attitude the same attitude taken toward my condition by the doctors,  their workers, and the service providers and the state officials?  Just something to make you say “Hmmm.”  Here is a video I found that night on the Pheochromocytoma facebook page: http://player.vimeo.com/video/44491869

*Here is my Youtube of what happened Friday; http://www.youtube.com/watch?v=-hxhJjqz704

Email; pheo.n.skye@gmail.com, for those that would like to only talk about all things concerning Pheochromocytoma.

 

 

Skye's Pheo Journey Day 2

The day started off as any other Thursday.  Matt left for work and leaves the local morning news on for me to listen to.  I usually wake up to a early call from someone on the mainland that’s unaware of the time on Oahu, like my daughter.  I planned on starting the day by making a quick phone call to correct a mistake in making a appointment to see a doctor for partial disability, while I’m getting ready for surgery.  From what I’ve been reading, I will have to be in intensive care right out of surgery for at least two or three days.  Here the link I used; http://www.mayoclinic.com/health/pheochromocytoma/DS00569/DSECTION=treatments-and-drugs
So, when Dr. Janet said she would sign any form to allow full disability, I started realize I should consider my condition more seriously.  So, at first I thought I didn’t need disability.  But, hearing how the medication will make me dizzy, drowsy, and not able to stand quickly, I started to know better than to not get the disability.  Dr. Janet said I should lessen my client load.  I do social media on the cheap and dreads, but not making enough to get a business permit or salon.  Right away I got a relief, cause I could use that as a reason to let loose my Rasta.  What he really needs is a personal assistant.  Well, I thought I make a quick call, but that didn’t happen at all.  It turned into a phone call nightmare.  I didn’t want to go anywhere, cause since I didn’t have the meds I need to control my blood pressure (now known as BP).  Now I know why my feet got swollen. Even when I didn’t eat anything, I use to think it was something I was eating.  So, I removed all processed foods, bleach flour, premade products, and anything with natural flavors and spices on the label.  I became a self proclaimed activist against GMOs and I seriously believe all GMOs should be labeled.  When talking to family, I was telling   what to eat.  Back to the hellish call to Human Services to reset a appointment date.  To make long story short, I found out my cell can only hold a 2hr call, cause that went dead.  My land line went dead after 4 hrs.  I was so mad at myself for being on the phone that long.  I know I could risk going down to the office.  I did learn a valuable lesson and that is to not feel paralyzed by my condition, like I can’t go anywhere or move.  On day two I learned after 4hrs waiting, cleaning the house, and calling city hall, along with a TV station to complain, and that is to go down there tell them how I feel,  Just like the old Skye would do.  Nothing about me has changed or should, just because I have pheochromocytoma.  So, I guess I'll go down to Human Services in the a.m.

Check out my latest youtube: http://youtu.be/m4SQbbb4Gbw

The Start of my Cancer Journey

Some people wake up thinking "this is the start of a new day and the start of a new you".

When i woke up on Aug. 17th of this year, I was laying in bed not thinking of me starting anything.

I woke up to a phone ringing, it was my man, Matt. I use his number for important phone calls, cause I can't predict when or if my phone or cell bill will be paid in a timely fashion, to allow me to have one working.   Matt called to tell me that the Dr. had called and she requested that I call her soon. When I called, the Dr. picked up the phone quickly, something that I'm not use to.  Usually I can't get a hold of anyone, at the clinic I go to.   The second I heard her say "I’m sorry", I knew it wasn't going to be good.  See, I wasn't feeling good the month before and went into the emergency room at Queens Hospital, after checking WebMD online.  I thought I had a problem with my appendicitis, but that wasn't the case.  After a MRI, I was told the pain I was feeling (they heavily drugged me to take the pain with morphine) was a tumor and to get a CT scan right away.  That was around July 4th, the same weekend that I got talk to my Aunt Geneva for the last time before she died of stage 4 lung and cervix cancer.  That Friday before July 4th, I told her first, that I know I have a mass and I need a CT. She said to make sure I follow up and take care of it quickly.   That was the last time I talked to her, while preparing to go to the hosp herself.  She did not know of her own cancer til she was 72, because she never liked going to the Doctor, though she had full coverage from a job she had worked at Philip Morris for over 33yrs in Kentucky.  She worked till the plant was forced to close or she would still been there, if she was living.  She worked many years after at Walmart, but they didn't have the med plan she needed, so she depended on her retirement.  So, I set a appointment and talked to a surgeon, who told me that I had a 3.8cm mass on my adrenal gland and it would be a outpatient surgery to remove it.  No big deal I thought.  I even planned a benefit show at the Hard Rock Cafe for the MLK Peace Poetry Award winners in Oct,.  I thought from what the Dr. said, that I could put it off and it will be taken care of.  His name is Fred Yost and he told me by time he orders and get insurance approval it would be ok.  I still had to take more test to see which type of cancer is was.  It would be either, metastatic, adrenal cortical carcinoma, or Pheochromocytoma.  So, I told my family to pray for the best.  Then I talked to Dr. Janet, who said the test results came back to be Pheochromocytoma.  She also mentioned that I should come in soon to talk about the risks and I would have a in-patient surgery instead.  I was blown away.   It was like a surreal, unexplainable moment, where I saw my life flash and saw that dreams of my youth come true, like deja vu.  I didn't tell anyone right away.   I had to let it soak in for a while.  I called my daughter, Anjelica first, and then told, Matt and my Moma.  I knew what Pheo could do to my body, after googling all the types of cancer it could be.  It causes uncontrollable high blood pressure that can lead to heart attack stroke or death.  I read the best definition on; http://endocrinediseases.org/adrenal/pheochromocytoma.shtml .

So, from what I read, there wasn't much out there for Pheo, like for breast cancer or many others. There's a Pheo facebook page online with less than 700 likes.  So, I added myself to the list that night I talked to Dr. Janet.  I feared not having the support I need from Matt.  I feared people shunning me, if tell them of my condition.  After telling the people associated with the MLK Peace Poetry awards. They wanted to go ahead with my plan, but put it off till next year.  So, I stopped telling people too much about my condition.   But, on Aug. 22nd, the night after I talked to Dr. Janet, I decided to let everyone know my pain.  Because, I feel everyone should know what a person of color that moved to Hawaii for a better life 10yrs ago, is going through with my Pheochromocytoma.  Seeing that less than 800 people per year get this condition, I want to create a Awareness.  So, on that night I started to make a video Diary of each day of my life, leading up to the surgery I must go through, a month from now.  In all honesty, I only have a 50/50 chance with my added heart condition (a bad case of materiel valve prolapse-heart murmur) to make it out of the surgery alive.  So with each day I have been creating this, I have now decided to add it to the net on Youtube and create a email; pheo.n.skye@gmail.com, for those that would like to only talk about all things concerning Pheochromocytoma.  May you be male or female, and no matter your race, when you have Pheo, we are in the same place.  Check out my 1st Youtube link and each days account of what a average creative, straving artist that goes by the name; Skye The Soul Poet since 2003.  I have traveled the US reciting my poetry and motivating others, but never making money in the way I want or reach as many people as I would care to touch, with my Poetry.  But now, I must keep on trying to spread the word Pheochromocytoma.

 

Youtube link: http://youtu.be/Niy9L16yn2E

 

Mahalo for reading*