Pheochromocytoma Journey for Skye Day 16

Skye’s Pheo Journey Day 16

September 6, 2012*

I got a call early to meet my last client, Wade.  We are going to finish cleaning up before his love comes to town.  Something to do, is what I need to keep my mind occupied.  It’s hard to let work go.  I’ve been working for myself for the last couple of years, cause I felt the need to keep my own hours.  Also, I wanted to try to go after a bigger goal to motivate others to do & treat people better.  Now, I know it was the spells & my condition that was subliminally keeping me from getting a straight job.  I have really busted butt the last year to earn my own trip to Austin for Int'l Poetry Festival, NYC for Momapalozza (that would lead me to being inducted into the Museum of Motherhood) and organize a huge portion of the Chinatown Juneteenth street festival.  The street festival organizing left me feeling unappreciated and unvalued.  Volunteering can be rough.  When I found out my art was accepted into a Smithsonian sanctioned museum, it turned into a pilgrimage for me to be there.  It’s that same attitude I put toward managing the outcome of this Pheo journey.  I refuse to let the unfriendly doctors and bureaucratic tape that keeps me from getting a level of service I feel I deserve. 

It’s Thursday and I don’t have any doctor’s appointments.  I’ve been looking for support groups on line.  I found PRESSOR and Pheo Troopers.  I need to learn more about them.  I haven’t the time to read on line lately.  I can’t seem to find a family member to come over.  So, I am trying to get support to bring Scott here.  Mrs. Marsha offered to go, but I don’t want to burden her, cause I know my attitude is going to get worst as time goes on, closer to the surgery.   When the fear sets in I get the why ME’s and a little angry.  I know I’ll have to come up with the money myself to bring him here.  A ticket from KY to Honolulu, isn’t cheap.  So, I put up an ad to do Rasta Dreads on line.  I charge a decent rate and do a good job.  I asked that Matt do 1^st Thursday Open Mic Poetry Slam with me.  I told him it’s my last 1^st Thursday for a while.  Its good practice for my own Poetry Nite at Rafter’s on the 28^th of Sept.  I’ve hosted a few “Skye’s  4^th Friday Poetry Nite” since 2005, at various gig spots around Honolulu.  Matt has a hard time rehearsing with me.  Somehow he feels like he doesn’t have to with me.  Sax Man Matt has a gig at Rafter’s this coming Sunday.  He has only came to 1^st Thurs a couple of times, each at a different venue.  I’ve been doing 1^st Thursdays since 2003, in Chinatown.  I treated Matt to a drink and we strolled over to the spot early, to sign up.  I like getting on the stage early while the crowd is hot, then pass my cards around.  Sometimes I pass out a couple of my chap books and find poets for my poetry gigs.  There was a good poet, named Gary that sound like a spiritual poet.  The deepness in his lines moved me.  I had to get his number and invite him to 4^th Friday.  Both Matt and I wearing hats, gave us a smooth artsy style.  Being the Cool Middle age couple, is a good look on us.  Of course, the crowd totally dug into our jazzy southern poetry vibe.  We had a good walk home.  You could smell the fragrant Plumeria through the breeze coming from the flowered trees.  The luscious floral scent made me feel safe and relaxed as we strolled home. Being sick makes me forget it’s the simple things that make you feel good.  When Matt and I got home, we watched some news from bed.  I made sure I took my second pill of the day and took my night time blood pressure reading.  Matt likes something sweet before he goes to bed.  It use to be me, now he eats.  Oh, well, I know I have that EKG to take in the morning, than do one last thing to help Wade get his place ready.   Hopefully the weekend will go as well as tonight.  I love doing poetry, it was a great release.  It will help me have better dreams.

Today’s Youtbe:   http://youtu.be/QkvlvghZaNI 

Here are some videos & links about Pheo& it meds:

https://www.youtube.com/watch?v=esv0u2AnID8

https://www.youtube.com/watch?v=yanXK3bYAmk

If you would like to talk about Relay for Life or anything about Pheochromocytoma only, email me at;  pheo.n.skye@gmail.com

Pheochromocytoma Journey for Skye Day 15*

Skye N Pheochromocytoma Journey


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

Pheochromocytoma Journey for Skye Day 14

Skye N Pheochromocytoma Journey
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 24^th.  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???

http://queenscancercenter.org/

I’m serious when I say I’m going to look up my doctor & you can too in HI.

http://www.medicinenet.com/pheochromocytoma/honolulu-hi_city.htm

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

Pheochromocytoma Journey for Skye Day 13

Skye’s Pheo Journey Day 13 

September 3, 2012

This morning I prepared the food I got for my outing to my buddy, Tanya’s house on the North Shore of Oahu.  Matt & I called a unsaid truce for the day.  I told myself to not let my blood pressure get high, today.  When I took my medication, I thought I would rest on the ride to Tanya’s & maybe lower my blood pressure.  My reading was a little high for being on the meds.  It was 135/96, with a pulse rate of 98. 
Tanya came into town to pick up Matt and I.  Matt was a couple of beers deep, by the time she came.  He loaded the car & helped to film me for my blog.  I rode shotgun & Matt sat in the back.  I tried to dress comfortable for the long 50min ride to the other side of the island in a car without air.  That’s alright, cause Hawaiian air is the best at times(when the Vog isn’t coming in from the Big Island volcano) & it’s free.  It wasn’t long on the highway before Matt started talking about how the country side use to look 20yrs ago, while Tanya mentioned the changes from ag to residential in the last 11yrs., since she got to Oahu in 2001.  Being a realtor, Tanya has seen a lot of development happen to Oahu.  Their conversation turned into white noise as we drove the windy road to Wailuku.  We could have taken the freeway, going another direction into the North Shore, but back way was more picturesque.  Thoughts of cancer & pheo floated into the clouds, while trees danced a slight hula to line the 2 lane highway.   A welcoming breeze grazed my face like soft orchid petal.  I had a good ride, listening to the reggae music.  I saw bright colored hibiscus align the last of Oahu’s country 2 lane highways.  As the hills behind the empty pineapple fields lead us into the valley on the edge of the shores of Haleiwa, I felt relaxed.  The sight is photo perfect in my mind still.  I wondered if the new papaya trees are GMO as we drove into Wailuku.  When I got to Tanya’s, I got right to work, preparing the food.  I fixed mango salsa & potato salad.  I soaked the ribs & pork chops, while the keawe wood burned just right in the grill.  Travis made using a blow torch to light a wood burning grill seem easy.  Travis & Tanya make a interesting co-depend couple.   The grilled cabbage was awesome.  Tanya’s friend, Ryan showed up as dusk fell.  She was just in time to join us for hot tube fun.  Ryan gave Matt & me a ride home.  So, Labor Day was worth the labor spent on fixing all the food I brought to Tanya’s, to insure a tasty time.  All in all it was a total relaxed night.  My truce with Matt held strong for the day.   Tuesday is a new day, we’ll see what new for my pheo.

 

Today’s Youtbe: http://youtu.be/6ExvVW6_los

Here are some video links about Pheo & it meds:

http://www.downtoearth.org/articles/2012-08/2942/help-prevent-cancer-plant-based-diet

http://www.drweil.com/drw/u/RCP02381/LemonGarlic-Hummus-with-Toasted-Pita-Chips.html

http://endocrinediseases.org/adrenal/pheochromocytoma.shtml

If you would like to talk about Relay for Life or anything about Pheochromocytoma only, email me at;  pheo.n.skye@gmail.com