Skye's Pheochromocytoma Journey Day 24
Skye N Pheo Sept.14, 2012
It's turning into a bad situation that Matt is picking a bad time to put me through it. I am too sick to help Matt understand how he needs to be there for me physically and emotionally. He's not listening to me. He doesn't see how his attitude & negative behavior is not helping my condition. I hope this isn't going to turn into a bad thing when Scott gets here. All this arguing has lead me to feel so bad. I have been feeling light headed all day, but I won't let it stop my poetry gig tonight. Like a stylist, I dyed my hair and got my gig gear ready that I bring with me. I even cooked some pupus. I have this new thing I'm doing, making cornbread muffins, like they are cupcakes. What I do is put pineapple in it & use organic products to butter it up. Cooking made my situation float away about Matt's craziness. There's no way I wasn't going to let him put me in a bad mood, today. Willingly, I dealt with my work clients today. I'm still able to do my work while Matt was gone to work. You would think Matt could pull it together long enough to be there for his wife. But, he is not the one. I hope he doesn't embarrass me too much tonight. When I got to the gig, I set up the sound & stage. I greeted Guy, who will join me by singing & playing flute, along with his uekele. Guy is a awesome Native American Flute player, that happens to be blind. He sounds like the musical flight from birds of peace. Makes me want to take wings & fly. His sounds relaxes me. Very therapeutic. Just what I need to hear today. The crowd was small, but cute. Most of my buds didn't show. I noticed after marrying Matt I don't see them as much. But, most of my friends in Honolulu are men. That might have something to do with it too. I've been working on getting more female friends. I never thought about not having girlfriends much. Oh well. I took my pill earlier that morning before dying my hair. My BP was 145/80. So, I was feeling sort of good during the gig. Drank plenty of water. I didn't drink much and kept it to one glass.
If you remember, during a break at Matt's gig last Sunday, I talked to a woman that was a nurse from Connecticut, with friends. Jules was here for a wedding. She came to my Poetry Jam. What a surprise to see her & her friends. I didn't think I would see her after that last gig. They brought a guy friend named Paul. Paul told me he has Pheochromocytoma. It blew me away to hear that. He said he was one of about 6 people he knew of, mainly from Big Island. It was a family that had it. Paul's son is getting starting signs of Pheo. That's when I wondered if Pheo is over looked as a condition. Paul mentioned he got it from having Von Helsingr disease. So, I started to wonder if I had that too. Something new to look up. With me dealing with Matt's behavior on the verge of embarrassing me, it was a blessing to talk to Paul. I was thankful to meet another brave pheo fighter. We exchanged information. I felt the universe is going my way, when I need it to the most. Matt left before I gathered up my gig stuff. At first I got upset about going home on my own, with all of my gig gear. Then, I realized I needed the time to myself to reflect on the type of strange, but awesome night I had. Seems like bad turned into good for me, tonight. None of my buds with cars showed. But, when I mention pheo, it seems to get a lot of denial. What I hear is a lot of is, "you don't look sick". Matt tells me constantly, that I am faking it. He is more concerned about doing what he shouldn't be doing at his age. My family is suppose to send funds via money transfer to give Scott when he gets here for his ticket. Scott has already booked his flight. He will be coming near for my birthday. I don't want Scott to deal with my domestic mess. It seems like he is coming straight into the middle of it. Paul said, he would call me and could possibly help me out with someone taking a look at me. I look so forward to her from him. At least there is some bright spot in this Pheo Journey.
Please take the time to check out my links that I found useful in getting information on Pheochromocytoma and the research clinics I found. There may be one link for you that can help in your treatment.
Today's Youtube: https://www.youtube.com/watch?v=PSJ4iTiXNvM
Here are some videos & links about Pheo & it meds.
http://www.endocrinologyadvisor.com/search/Pheochromocytoma/?DCMP=OTC-EA_gc2014&gclid=CMybuurqhMECFYqEfgodeQYA8Q
http://www.youtube.com/watch?v=lX68XFP0Z1s
http://www.youtube.com/watch?v=qm3nHnuyBM8
http://www.youtube.com/watch?v=5iJ7TFxUvAw
If you would like to talk about anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com
Friday, October 3, 2014
Tuesday, September 30, 2014
Pheochromocytoma Journey for Skye Day 21
Skye's Pheo Journey Day 20/21
Tuesday Sept 11, 2012
Aloha, let's get straight to it. My Monday was all about me tryin to get a letter that is turning into a horror to get. I need a diagnosis letter to give to my disability Dr., so I can get state financial. Now that I'm too sick to work, I force myself to keep one client to make it. I don't know how much I would get from state disability but, I'm hoping that it will replace what I'm making now, working for myself part time. I couldn't get a Dr. at the Queen Emma clinic to return a call and going into the office is only trouble for me, cause they treat me like an angry black woman out to get them. So, I called & called with no real answers given. I have to prepare for my Poetry Gig this week. Matt is acting a fool. I try to give him info to read on pheo that I printed. He doesn't want to pick up my pheo info to read but, still tell me what's best for me. It's been hard dealing with his issues while going through my Pheo journey. The lack of support is starting to show in my health. I am getting more and more weak it seems and I'm getting more spells. When I have a spell, I get dizzy & light headed. The only thing that seem to calm the spells down is laying down. I've been getting these spells for years. Usually, I can feel them coming on & do something about it before it gets bad. Now, they get bad within a couple of minutes, unlike before. So, on Tuesday morning I called Patient support to get the diagnosis letter and got put on hold. Then I was put off by them. I decided not to waste my morning on the phone & went down to Queen's to try and get the support letter in person. When I got there, I couldn't get the letter I needed from the clinic. So, I went to the Patient support office. The clerk said, I needed to return on the 14th, like the clinic mentioned. Hell no, I was not going to settle for that. With a determined look on my face ,I made sure I let them know I'll be back. In a hour, I had an appointment to go to at the state disability office. There is no way I was going to miss that, so I left with no letter. As I left the clinic, I saw a lil' crane dancing along the hospital lawn. Watching the bird for just a minute, made me feel a little less stressed. It's the simple things that I cling to for peace. Because, I need any little bit of beauty or silence I can get to help make my meds react and work properly. For what it's worth, I feel there is a connection between how you feel and how well your meds work. Where's that study? The distance from Queen Emma clinic to the disability office in Kilihi town was only a quick bus ride away. While sitting at the bus stop, I kept staring at the Hawaii State Capitol across the street. I thought I should just walk straight into the office of State Senator Green, over the State health Dept. & tell him what I think of how clinics handle state disability procedures. The way I feel now after leaving Queens, I would get kicked out for cussing & fusing. I did the right thing & caught the bus to the Dr. instead. When I got to the State disability office, I couldn't believe how ghetto, yet clean the office looked. Then I got it, you must not receive much from the state, cause the office doesn't look like much. Oh, no. Maybe I should apply for SSI. But, the doctors say I will be cured before the 6 months it would take to get it. I don't want SSI to be taken out from my SSI when I get older, cause I haven't put much into the system, being a Mom. The Doctor at the disability clinic was excited to talk about the Pheo. I don't think I will get any problem getting disability. now. If they can get the paperwork catch up & say the right thing & schedule appointments right & not send out dated appointment letters. I wouldn't be chasing them. The Doctor wanted the diagnosis letter from my Doctor at Queens. I told the disability doctor, I would drop it off. I got a call from one of my Aunts saying that they would help me get Scott here. My family only has about $250 to pitch in. I will put in the rest, if needed. I do have a friend from Australia that has been helping me out financially, knowing that Matt is not giving me any additional cash. By, the time I was on the bus heading back home. I got a call to come in and get the diagnosis letter. Dr. Janet & Dr. Sato are the ones that told me to stop working. You would think getting this letter would be a easier process, without all the pressing to get it, on my part. At, least my unwillingness to give up, got me my letter I needed to give it to the disability office. Taking the letter to the Kilihi clinic will be quick to do tomorrow. I thought while I was down at Queens, I might as well work on pushing for a earlier EKG appointment. The EKG is to make sure my heart is good for surgery. So, I stopped by the Queen's Heart Clinic to sweet talk the receptionist. I was able to move the EKG appointment from Sept 26th to Thursday, September 20th. I got a call from the supervisor of Human Resources to tell me they recognize my Pheochromocytoma. I felt the need to educate the staff, maybe I can get my disability then. With the needed diagnosis letter, I should get state disability. Thank Goodness for that change. After all that running around, getting home didn't mean getting rest. I saw Matt with Jon, when I got home. Matt was trying to help walk Jon's standup bass home. Matt was clearly unable to do it, due to his drunken condition. I could see on Jon's face, that he couldn't do it & was upset with Matt for being out of sorts. There was no way I was going to allow Matt to break the guy's bass. So, I took the bass from Matt, let him yell & cuss & walked Jon's bass home for him. There was no way they were going to let a big bass on the public bus. So, Jon & I walked it the whole way. I enjoyed my visit with Jon. I didn't worry about my condition, when helping out a friend. Getting home before Matt is why I didn't hang out with Jon for long. Once I got home, I went to my room, took my meds, locked Matt out & went over my poems, some websites for pheo and went to bed. All I wanted was peace & he just won't give it. Who said dealing with a trying relationship and pheo was easy. Not me.**
Please take the time to check out my links that I found useful in getting information on Pheochromocytoma and the research clinics I found. There may be one link for you that can help in your treatment.
Today's Youtube: http://youtu.be/SD0lUfSeF60
Here are some videos & links about Pheo & it meds.
http://www.nichd.nih.gov/health/topics/pheochrom/conditioninfo/Pages/default.aspx
http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
https://www.youtube.com/watch?v=lX68XFP0Z1s
If you would like to talk about anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com
Tuesday Sept 11, 2012
Aloha, let's get straight to it. My Monday was all about me tryin to get a letter that is turning into a horror to get. I need a diagnosis letter to give to my disability Dr., so I can get state financial. Now that I'm too sick to work, I force myself to keep one client to make it. I don't know how much I would get from state disability but, I'm hoping that it will replace what I'm making now, working for myself part time. I couldn't get a Dr. at the Queen Emma clinic to return a call and going into the office is only trouble for me, cause they treat me like an angry black woman out to get them. So, I called & called with no real answers given. I have to prepare for my Poetry Gig this week. Matt is acting a fool. I try to give him info to read on pheo that I printed. He doesn't want to pick up my pheo info to read but, still tell me what's best for me. It's been hard dealing with his issues while going through my Pheo journey. The lack of support is starting to show in my health. I am getting more and more weak it seems and I'm getting more spells. When I have a spell, I get dizzy & light headed. The only thing that seem to calm the spells down is laying down. I've been getting these spells for years. Usually, I can feel them coming on & do something about it before it gets bad. Now, they get bad within a couple of minutes, unlike before. So, on Tuesday morning I called Patient support to get the diagnosis letter and got put on hold. Then I was put off by them. I decided not to waste my morning on the phone & went down to Queen's to try and get the support letter in person. When I got there, I couldn't get the letter I needed from the clinic. So, I went to the Patient support office. The clerk said, I needed to return on the 14th, like the clinic mentioned. Hell no, I was not going to settle for that. With a determined look on my face ,I made sure I let them know I'll be back. In a hour, I had an appointment to go to at the state disability office. There is no way I was going to miss that, so I left with no letter. As I left the clinic, I saw a lil' crane dancing along the hospital lawn. Watching the bird for just a minute, made me feel a little less stressed. It's the simple things that I cling to for peace. Because, I need any little bit of beauty or silence I can get to help make my meds react and work properly. For what it's worth, I feel there is a connection between how you feel and how well your meds work. Where's that study? The distance from Queen Emma clinic to the disability office in Kilihi town was only a quick bus ride away. While sitting at the bus stop, I kept staring at the Hawaii State Capitol across the street. I thought I should just walk straight into the office of State Senator Green, over the State health Dept. & tell him what I think of how clinics handle state disability procedures. The way I feel now after leaving Queens, I would get kicked out for cussing & fusing. I did the right thing & caught the bus to the Dr. instead. When I got to the State disability office, I couldn't believe how ghetto, yet clean the office looked. Then I got it, you must not receive much from the state, cause the office doesn't look like much. Oh, no. Maybe I should apply for SSI. But, the doctors say I will be cured before the 6 months it would take to get it. I don't want SSI to be taken out from my SSI when I get older, cause I haven't put much into the system, being a Mom. The Doctor at the disability clinic was excited to talk about the Pheo. I don't think I will get any problem getting disability. now. If they can get the paperwork catch up & say the right thing & schedule appointments right & not send out dated appointment letters. I wouldn't be chasing them. The Doctor wanted the diagnosis letter from my Doctor at Queens. I told the disability doctor, I would drop it off. I got a call from one of my Aunts saying that they would help me get Scott here. My family only has about $250 to pitch in. I will put in the rest, if needed. I do have a friend from Australia that has been helping me out financially, knowing that Matt is not giving me any additional cash. By, the time I was on the bus heading back home. I got a call to come in and get the diagnosis letter. Dr. Janet & Dr. Sato are the ones that told me to stop working. You would think getting this letter would be a easier process, without all the pressing to get it, on my part. At, least my unwillingness to give up, got me my letter I needed to give it to the disability office. Taking the letter to the Kilihi clinic will be quick to do tomorrow. I thought while I was down at Queens, I might as well work on pushing for a earlier EKG appointment. The EKG is to make sure my heart is good for surgery. So, I stopped by the Queen's Heart Clinic to sweet talk the receptionist. I was able to move the EKG appointment from Sept 26th to Thursday, September 20th. I got a call from the supervisor of Human Resources to tell me they recognize my Pheochromocytoma. I felt the need to educate the staff, maybe I can get my disability then. With the needed diagnosis letter, I should get state disability. Thank Goodness for that change. After all that running around, getting home didn't mean getting rest. I saw Matt with Jon, when I got home. Matt was trying to help walk Jon's standup bass home. Matt was clearly unable to do it, due to his drunken condition. I could see on Jon's face, that he couldn't do it & was upset with Matt for being out of sorts. There was no way I was going to allow Matt to break the guy's bass. So, I took the bass from Matt, let him yell & cuss & walked Jon's bass home for him. There was no way they were going to let a big bass on the public bus. So, Jon & I walked it the whole way. I enjoyed my visit with Jon. I didn't worry about my condition, when helping out a friend. Getting home before Matt is why I didn't hang out with Jon for long. Once I got home, I went to my room, took my meds, locked Matt out & went over my poems, some websites for pheo and went to bed. All I wanted was peace & he just won't give it. Who said dealing with a trying relationship and pheo was easy. Not me.**
Please take the time to check out my links that I found useful in getting information on Pheochromocytoma and the research clinics I found. There may be one link for you that can help in your treatment.
Today's Youtube: http://youtu.be/SD0lUfSeF60
Here are some videos & links about Pheo & it meds.
http://www.nichd.nih.gov/health/topics/pheochrom/conditioninfo/Pages/default.aspx
http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
https://www.youtube.com/watch?v=lX68XFP0Z1s
If you would like to talk about anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com
Sunday, September 28, 2014
Pheochromocytoma Journey for Skye Day 19
Skye's Pheo Journey Day 19
I popped open my eyes after waking from the same dream I have all the time. I'm having fun, then the person I'm with disappears. A daughter I lost to a ex that married a millionaire, in a heart breaking custody battle and have not talked to in more than 10yrs, called me after she talked to my oldest daughter. I've been so full of emotion talking to her, it took all I had to not cry each call. It was saddening to tell her I may have a rare cancer & that I may not survive it or I may survive. She brought me up on her life. Because of all that I've been dealing with, I haven't talked to her for a bit. I heard she talked to my step father, which I think is a bad idea, cause he doesn't talk kindly of me. I don't want her to stop calling me. But, lately I haven't been able to reach her to keep in touch with my condition. So, this is what has added to my stress and my dreams. In my dreams she looks like the photos I see of her on Facebook, where I gasp at how grown she is now. I've been writing a book of 365 Days of what I want to tell my daughters & what I want them to know about me. I've been searching the web & dream books but, I have yet to get a true interpretation for why people I love are disappearing in my dreams. I know I've been stressing over who is going to come & help me through my operation. If I could get my surgery in TX, I would go & stay with Mom or go to KY where my daughter is. But, instead I got to stay where I get my Insurance. Though medquest is across the country, you can't use it across the country, except for the emergency room. I've been talking to Scott and telling him of my woes. He feels me. He said that he never thought Matt was good for me, but he also thinks Matt looks a lot like the love of his life that died of AIDS. Him saying that, back in 2009, never sat well with me & created distance, that kept me from calling as much as I should. But, he is my best friend & I trust his opinion. So, I called my family early in the morning, knowing they are 5 hours ahead of me. My Aunt Juel and her daughter, Jill(my cousin) mentioned they would try to contact the other cousins to see if they could get a collection to send for Scott. I rather have a family member be with me, but they said they have to work. Due to my Aunt Geneva & Uncle Leigh's funeral earlier that year, no one can take off from work. Aunt Juel said she would come, but Jill feared the long flight for her Mom. I figure Scott would help, but he's never been the caring type. Understanding yes, but when it comes to caring & fix you a meal or go & get your meds, I never seen that side of him. Knowing this, makes me wonder what am I getting into.
So, after talking to my family, I got ready to support Matt at a gig he has with Stewart Cunningham. My BP so far today was 141/85, which shows the benzo meds are working. My pulse rate was high. I'm taking Phenoxybenzamine HCl 10mg; caps, one pill twice a day. I don't know if the dosage needs to be increased or not? Another question I would like to ask.
I think I could bring it down more if I get regimented in taking my meds. Stewart is a old piano player from Detroit and has played & gotten high with the best in the biz from Etta James to Henderson. I sang with Stewart at a few Street Festivals and other gigs. I meet him in 2003 on a public bus, a year after starting over in Hawaii. He wanted me to sing jazz and I would like him to play more blues. All the songs I like to sing, he wanted to sing them too. Oh, well. So, I reintroduced him to Matt, who last saw him in the 90's. I was running too late to catch the whole gig. That's ok, cause I'll hear the best part, the end. I tried to look good to feel good and took my favorite snacks to a Sunday Brunch Time Jazz Get-together at Ward Rafters. This is where I have a open mic poetry gig in another week. I wanted to make sure I went to say hi to Mrs. Ward. She is 90 now and still loves good blues and jazz. When I got there, it wasn't as crowded as some Sundays. But, it had a comfortable crowd. Matt was playing like he was at the Blue Note in NYC. When Matt plays his sax, he gives it his all. Matt lives inside the music and brings it out for us to hear, like a Jazz Commando. At the end of their last set, I got a chance to belt out one good Blues song. So, I sung "Everyday I have the Blues" by B.B.King. I told the crowd that's how I felt. So, I should sang it. It felt like a spiritual release to get the song out of me.
During a break I talked to a woman that was a nurse from Conneticut, with friends. Jules was here for a wedding. Jules said, she spent alot of money to come hear & meet a nice guy that lives in Big Island that was in Honolulu with her for the wedding. I testified and told her of my pheo diagnosis and what I thought of the type of care I wasn't recieving & how I was checking out more options before it's to late for me. She said that she knew of pheo & how rare it was That surprised me, that she would know about pheochromocytoma. I gave her my biz card and told her to give me a call if she needed to know where to go while she was in town. I also told Jules to call me, if she knew of a clinic or anything that could assist me in curing my pheo. Jules mentioned, she might call.
Now it was time to go home and take a pill & check my BP. With the boys accompanying me, made the long walk down the hill easier to take. All in all, I had a good day. I barely eat and drank a lot of water, so I wouldn't swell or have a spell. I know I needed to call the clinic in the morning to check on an appointment. The view walking down the hill is scenic and beautiful. Just looking out, makes my stress go away. Then you see all those houses and think how much it looks like L.A. After thinking that, I start wishing I was one of the other Hawaiian Islands like, Big Island or Kauai to be closer to nature. One day I will, but for now I just need to get this pheo straight and try to get more support. My journey still rambles on.
Please take the time to check out my links that I found useful in getting information on Pheochromocytoma and the research clinics I found. There may be one link for you that can help in your treatment.
Today's Youtube; http://youtu.be/8nVNf03vfw8
Here are some videos & links about Pheo & it meds.
http://www.cancer.gov/cancertopics/types/pheochromocytoma
http://www.nichd.nih.gov/health/topics/pheochrom/conditioninfo/Pages/default.aspx
http://www.youtube.com/watch?v=esv0u2AnID8
If you would like to talk about anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com
Monday, September 22, 2014
Pheochromocytoma Journey for Skye Day 17/18
Skye’s Pheo Journey Day 17/18
Friday & Saturday of September 7th & 8th, 2012*
(Notice under what procedures they do, Pheo or endocrine is not listed*VERY SCARY that they could have operated on me)
Today I am supposed
to go to the Clinic. It started to look
like my options from Queens Emma Clinic seemed fatal. I decided that I need to keep records about
my condition and cover everything these doctors are not saying. It’s part healing and a part covering my back
writing about it. So, that morning, I
started a blog page on Blogger called; Skye N Pheochromocytoma. Sounds direct & I like to keep it direct and
straight forward, because I know I’m writing the facts as I experienced
it. I call each blog, “Pheochromocytoma
Journey for Skye”, cause that’s the way I like to look at what I’m going through. I also started a new email account for the
blog too, called, pheo.n.skye@gmail.com
along with a youtube channel under the same name and another email for SkyeTheSoulPoet@yahoo.com,
all before going to see the Doctor. My
computer was running on low speed. I
will work on that. Starting the web
accounts made run late. I had to wait
anyway, because it’s a take a ticket after typing in your name system. Then the admin clerk calls you by your
number. On the day of my diagnosis I
video taped the start of my Pheo Journey. I made Matt to tape it for me. Now, I think I have enough video to start a
blog. I am hoping by having the video I
can remember what happened easier. If I
don’t do the blog in a timely fashion and take my time, it will suffer. Something tells me that this blog writing is
going to get pretty emotional for me.
When you relive what you are going through in your writing, it can get
very emotional at times. When I got to
my number called, I had a PA(physician assistant) take my vitals. I should know what to
expect from a university based clinic. But, it’s hard, with a BP of 189/96. I wanted to talk to Dr. Janet. I couldn’t get her to return my calls. I went to the clinic to take a BP
reading. I show them my calendar I put
my BP readings on with time of each reading.
The nurse said I keep good records.
That was good to hear. Then I thought, of course I do, it’s important to me.
I realized that I had to start getting on line & finding my own support. Calling my family wasn’t gaining any support.
I found out on my own that the local
American Cancer Society of Honolulu would supply me with rides to doctor
appointments and tests. I didn’t use
that service often. I bought a bicycle a
couple of weeks before my diagnosis to get in shape. The clinic was so close, till I could walk or
ride my bike there & get there within minutes. I went home to deal with Matt’s disturbing
ways and deal with more of the same from him on Saturday. At least he goes off to play a gig on
Saturday nights. So, I could have my night
free to relax. I have a lot of stress,
dealing with this pheo & doctors that don’t care about my health outcome. At least that’s how I’m taking it for right
now. To get a non-supportive person
telling me that my problems are upsetting him and listen to how he doesn’t want
to help, hurts very much. But, I must
move on and start finding my own cure.
Now is the time for me to realize that I’m not going to have the level of
support I feel I need and get over it and motivate myself into overcoming this
journey on a positive note. So, on
Saturday night I watched a movie and colored my hair. I opted out of going out to a nite club to
buy a high priced non alcoholic drink.
The old movie flick from my late twenties put me in a more upbeat
mood. I never cried to that movie
before. But, I guess with all that I’m
going through, any movie would make me cry at this point. Even a comedy made me cry. After coloring my hair, I retired to my
bedroom to go on-line & find out more info on Pheo and how to get another
point of view on my pheo tumor. I’ve
been looking at Mayo clinic & think I should call them. I am thinking of checking out some test trails too. I tried to go to sleep before Matt comes
homes. He has been sleeping in the
living room these days. I have a 4th Friday open mic Poetry
night coming up that I planned to have before I got my diagnosis. I do Spokenword to music and sing blues. I enjoy motivating others to bring the best
out of themselves and stay positive.
But, ever since I got married, it seems to it’s been one issue after
another that is pulling on my positivity. From getting screwed over doing all
the logistics of a festival, that rewarded no monies promised to me, to the lack
of support from a husband that clearly has fell off the wagon & refuse to
admit it or do anything about it. He has
a gig coming up on Sunday, maybe I’ll go.
Please take
the time to check out my links that I found useful in getting information on
Pheochromocytoma and the research clinics I found. There may be one link for you that is still
doing research and accepting patient for surgery & treatment.
Today’s Youtube: http://youtu.be/SmgGlX3KoMc
Here are some videos & links about Pheo & it meds:
I’m serious when I say I’m going to look up my doctor & you can too in HI.
(Notice under what procedures they do, Pheo or endocrine is not listed*VERY SCARY that they could have operated on me)
If you would like to talk about Relay for Life or anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com
Tuesday, June 24, 2014
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 1st Thursday Open Mic Poetry Slam with me. I told him it’s my last 1st Thursday for a while. Its good practice for my own Poetry Nite at Rafter’s on the 28th of Sept. I’ve hosted a few “Skye’s 4th 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 1st Thurs a couple of times, each at a different venue. I’ve been doing 1st 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 4th 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.
Here are some videos & links about Pheo& it meds:
If you would like to talk about Relay for Life or anything about Pheochromocytoma only, email me at; pheo.n.skye@gmail.com
Monday, June 23, 2014
Pheochromocytoma Journey for Skye Day 15*
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
Pheochromocytoma Journey for Skye Day 14
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
Sunday, June 8, 2014
Pheochromocytoma Journey for Skye Day 13
Skye’s Pheo Journey Day 13
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.
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:
If you would like to talk about Relay for Life
or anything about Pheochromocytoma only, email me at; pheo.n.skye@gmail.com
Friday, May 9, 2014
Pheochromocytoma Journey for Skye Day 12
Sunday Sept. 2, 2012
Skye’s Pheo Journey
Got up early, but didn’t jump out of bed and I don’t drink
coffee. At times I act like I do drink
coffee. I took a BP reading. It was around 135/97 with a pulse rate of 77. Yesterday the pulse rate was 97. So, I guess the pills work. Are they working? I questions so much these days if the
hospital is doing what’s right for me. I
don’t know if I’m taking those little red pills like I should. Because I don’t take it except once a
day. But, I didn’t take it at the same
time as yesterday when I started. I
wonder if the meds are working? Cause it
seems like I’m having more spills since I started taking the Benos(my shorten
name) phenoxybenzamine
pills. Maybe, it’s me being more aware
of my disease. I have been reading a lot about Pheochromocytoma and what I
should eat to keep my BP low. I use a
salt substitute that I have been using for a while. I’ve been having BP for years, thinking what
lead me to my BP was my diet. I slowed
down & gave my diet a retrospective reconstruction a long time ago, when I
thought the dizzy spills were due to my salt intake. Plus, my Grandmother had 2 heart
attacks. Which lead me to believe I
could have inherited it. I thought that
was my reason for having my own 1st heart attack, at age 36. Did Grandma have it too? No, she lived longer than 45, which is the
age of a person to more likely get Pheochromocytoma. It can turn fatal if goes undetected like
me for at least 5 years, due to the size of the tumor.
So, when I got up that Sunday, I knew what I wanted to get
at the market. I like going to Chinatown
on Sundays. At the open market, I can
buy vegetables cheaper than I can get them at the high priced grocery store or
health food store all geared to get the tourist/enlisted military buck. I have my favorite stores & deals on
tomatoes, onions, potatoes, cabbage, & avocados. Some times I get fresh cut meat from the
indoor market. But, today I have a taste for fried green tomatoes. I was able to find a few really good green
tomatoes to fry up. I will fry it up
with olive oil and stone ground organic corn meal in a glass skillet. I have been watching Dr. Oz & he said
that the best way to know real olive oil is by seeing on the bottle, a harvest
date. Ever since I heard that, I tried
to find a harvest date on a bottle of olive oil. I could only find one store in all of
Honolulu at a reasonable cost of $ 16 per 10oz bottle. I thought this one CA brand of oil was true,
but I found out it wasn’t a trusted brand.
It was a easy going day all in all.
I got fresh sun worn ripe veggies. So, now I feel that’s a fresh start in keeping
my BP low and help it work with my new Benos meds. Mahalo for taking the time to care enough
about a rare disease & caring about the struggles in life that leads a
person to act out. The video is a little
shaky today.
Today’s Youtbe: http://youtu.be/s95EW_TBhEg
Here are some video links about Pheo & it meds:
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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