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