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, September 30, 2014
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
Subscribe to:
Posts (Atom)