Pheochromocytoma Journey for Skye Day 10

The day started like any other day for a woman that just found out she has Pheochromocytoma.  I called Aloha Care, who is my medicaid provider, to check to see if my blood pressure cuff has been covered & if I could get it the same time I get my new prescription @ Queens Physician's Bldg.  Aloha Care said that my cuff was covered.  So, all is left to the medical supply provider (ACE Medical) to follow through, NOT*  After showing my butt crack while filming, from wearing low riding pants that doesn’t flex with my weight gain from HB bloating for the camera, I remained on the phone for only 8mins.  I didn’t get the answer I needed, which was Aloha Care saying I’m covered & ACE should give it to me & the other, Ace Medical is just being too profit hungry to sale a blood pressure cuff at cost that the insurance, Aloha Care would only cover.  I refuse to pay the deference, when I know I can buy a BP cuff at a pharmacy or big box store for less than the deference that I would pay to ACE.  Ace was asking for $94 & the cost is $15.  I stay determined to solve my own problems that the insurance company & med supplier don’t care to do or get involved to do their job with grace or compassion.  These corp monsters are all about the bottom line & their actions make it clear to me to know their intent to refuse to assist in a proper fashion was expected.  The smug attitude I got from The ACE Medical customer service made my blood boil, which only added to my frustration, which makes my blood pressure rise & spells happen more often & frequent.  Then again, my blood boils easily with as one of my symptoms.  Instead, I feel that their only interests are for those that create profits for them & not for someone dependent on the medicaid system that my tax dollars from all the jobs I have worked paid into, for moments like this.  So, I talked to Stacy with Ace Medical & her boss, who I take, is a very ugly evil Kroela Devil type woman that sits in her Mercedes & tries to run over people like me, that take too long to cross the street.  Ace’s cost is the same as the amount that Aloha Care is only willing to pay & that’s $15, but Ace sells it for $94, & refuse to sell it to me for cost.  It’s ugly enough that they would make 3 times the profit on the item, but to not have consideration for medicaid individuals & know the fact that cases such as mine rarely come up, as told by Stacy,  They don’t even get less than 10 request such as mine in a year.  Note: Medical supplies are never prescribed by doctors unless seriously required to prevent a very serious health concern.  Dr. O.  told me the only way Aloha Care would even except the prescription for the BP Cuff, was her telling them…”that it’s either the cuff or they pay for 2 weeks in a hospital to bring my BP under control.”  The owner of Ace Medical Supply, Dorothy, is starting to seem like Dickens’ Scrooge.  I feel I may have to go to hospital to bring down my BP, if ACE Medical doesn’t cover the cost of the cuff or I’ll just have to hustle up the money to buy my own. 

So, after spending the morning on the phone, I thought it would be nice to go to the beach & float my troubles away.  I also would like the sea water to heal my bug bites.  The salt in the Hawaiian water dries up my bug bites quick & I get fewer marks left on my skin.  Plus, the water makes my skin feel smooth as a baby's bottom, l think.  After putting on my swim suit & a hat to shield me from the bright sun,( it must be 85* that day) I was ready to pick up my meds, then hit the beach.  The pharmacy @ Times Supermarket, I requested to use wasn’t allowed, so I had to get it from the Queens Hosp. pharmacy instead.  I like Times, cause they have a pharmacist that reminds me of the one I had back home in the neighbor I was raised.  Plus, he never mind answering all my questions without acting like he was too busy to answer.  Now, that sounds like they want to be the only one to benefit from my $300+ prescription price that they are billing medicaid for, instead of my local pharmacy.  Just sayin….   

I had to catch the bus, walk up a hill that normally would be nothing.  But, with my pheo & having dizzy spells at the drop of the hat, it made the little walk up the hill seem like Mt. Kilimanjaro.  I brought a cold can green tea with me to give me energy without beet sugar (I hope, cause we know that most sugar in US is GMO beet sugar & my health has enough problems without adding more GMOs to my diet).  I had to stop half way up the street to hold my head down to stop the dizzies.  Once I got up the hill, I found out I went to the wrong building, so I went to the next Dr office, one over.  Once I got to the pharmacy, I asked all the needed questions, like could I have a drink of wine with my pills.  I was told one wouldn’t hurt, but I probably shouldn’t drink, since I can’t really drink now without bloating or swelling up.  I am going to have to slow down my drinking greatly.  I went over the see a bud of mine that lived near Queen's Hosp.  Before leaving my friend’s apt, Dr. O. called to tell me that I could get the BP cuff, but from another pharmacy office.  There must be a BP angel that got it for me, because when I asked Dr. O. who got it, she said to not worry, she knew I needed it & made sure I got it.  I know Dr. O is doing her best, but I know she knows very little about my disease.  Because when I asked, she said I was her 1^st Pheo case since college.  That conversation made me to google her & the other Doctors I was told would be operating on me.  I found nothing on her & the others had bad scores (I mean like less than 45%) which made me question more about my procedure.  I wanted to come in the office & talk more to Dr. O., but the clinic bullying clerical staff that had no understanding how a person with pheo reacts, took my request as angry black woman & even called security on me once.  Pheo is known to affect your Fight to Flight, so you get a little upset easily.  So, Five big locals boys came up to the clinic while I was trying to get answers in person about my test results & ask questions.  I filed a complaint with the patient advocate office, which is a joke, cause they never properly responded to anything I complained about, till I said I was going to go to the news & get a atty.  That’s when I learned that medicaid patients in that hosp. wasn’t taken as serious as big PPO/HMO card holders.  I should have known how they care when the clerks only called you by number instead of name.  They didn’t do it before, but said they did it to make it easier.  Seems really impersonal & cold to me & when you’re seriously sick, cold approach isn’t what you want.  So, I give their clerical staff a F+ for failing to be caring.  There was one, but she was the oldest one there.  Not saying the younger generation is cold, but it seems they are less knowledgeable about patient conditions, which make them unattached to the people they are helping.  The doctors never really explained the MRI or scans I was getting.  Pheo causes irrational behavior due to the tumor on my adrenal gland, so it causes fight to flight syndrome.  It’s just a big way of saying I get upset easily.  All this time, I thought I was a bitch, but it was my tumor on my adrenal gland growing out of control.  I guess by the way I feel, I had it a while.  So, I was going to stop by & say hi to a friend in Chinatown, but got tried & went home, after stopping at the University of Hawaii Cancer Research Center, which was no help at all.  There was hardly no one in the office & when I did find someone to come out from hiding, they said they have not done a study she knows of on Pheochromocytoma & wasn't aware of any study coming up.  So, I took a bunch of cancer treatment & care brochures, and then left for home.  I passed on going to the beacdh after spending over an 3hrs out & about.  Later at home, my friends Tanya & Ryan stopped by & we watched a movie with my low ride jeans on again.  Tanya offered to come by & pick up Matt & me, to go out to her house on the north shore for a Labor Day weekend BBQ.  I accepted gladly & offered to bring most of the food & cook it.  I would like to sing more & do more poetry, but I’m afraid of passing out in front of people.  I do have a Poetry gig coming up soon.  Meanwhile, I haven’t heard from my family in TX, who said they would send someone to help till surgery.  I’m not going to pressure them, because it seems Moma doesn’t want to come & neither does the others.  Tonya has a hot tub & that’s just what I need to relax, as I start to take my new meds.  I should have asked if hot tubes effects my meds.  Now, I have something fun to look forward to for the Labor Day weekend, instead of feeling stuck with my drunken Matt for a long weekend.

Today’s Youtbe:  http://youtu.be/8AsLSPyN1YE


Good Article with good quote: "pheochromocytomas are regarded as quite likely the single most high risk tumor that physicians treat." This is why you want a good Doctor & google them to know. Please Read.
http://endocrinesurgery.ucla.edu/patient_education_pheochromocytoma.html 

For those that would like to only talk about all things concerning Pheochromocytoma.
Helpful Link to learn more about Pheo:

http://www.downtoearth.org/health/diseases-conditions/help-prevent-cancer-plant-based-diet

http://www.cancer.org/

Pheochromocytoma Journey for Skye Day 9

Pheochromocytoma Journey for Sky Day 9

 

Day 9 started off fine.  Of course, I played phone games, but decided not to let it stress me out.  I went between calling Ace Medical equipment and Aloha Care insurance. 

Aloha Care told me the blood pressure cuff Dr. Onopa ordered for me was approved, but Ace Medical didn’t want to pay the cost price, which was $15, when they over charge insurance companies and patients with a insane cost of $98.  Let’s all understand that the basic retail cost is only $20 to $35 at any box store.  When I asked Venessa, the  president of the company to pay cost for one time, she refused.  I asked Venessa to eat one blood pressure cuff and consider it as a donation.  She said NO!  What is wrong with a company that puts profits first, oh yah, it’s called corporate greed.   I talked to Dr. Onopa and after 3hrs of phone play, she said that I could get the meds and blood pressure cuff, but only from Queens Physicians’ Building on a big hill.  For what I consider a selfish reason on the part of Queens Medical to keep the prescription bill with them, is why I can’t use my pharmacist.  During this time and during my client calls, I was having spells.  I tried drinking water, but my heart was racing, so I took an aspirin, since I had no pheo meds yet.  My head was spinning too.  I was just a little dizzy.  I wanted to lay down, but my need to make my own money was greater.  The only type of work I can do, while getting spills is my part time, self-employed work.  I have got spells since the mid 90’s.  It’s that when GMOs got more into the U.S. food supply.  Within the last couple of years the spells have gotten worse.  My husband told me I didn’t have to work for the 1^st 2yrs of marriage, but it didn’t make the spells stop like I wished.  Now, it’s time to go back to some kind of work & my husband is feeling the financial strain from me not working, so I thought.  So, I did think, till I found out he was spending his money on what would eventually ruin our relationship & my trust in him. The day has passed along and by then it was 4pm.  So, I decided to go and pick up the prescription tomorrow.  Later that evening, my relationship with Matt was wearing on me, so I choose to go out to the local mall to pay on a bill and get out of the house.  I enjoyed walking along the hnl city streets, watching the boys play b-ball and watching the action of city lights at night.  The walk helped me gather my thoughts, which have been all over the place, lately. Later, I got a good spot to film myself in the mall that just stood out to me and I filmed.  Just talking and getting worries of my day off my chest relieves a little of the stress of dealing with the misunderstandings that I get from the insurance, med supply provider, and Dr.  To my readers, I say, Aloha for listening.  Sometimes it can be rough discovering a rare disease and try to find some understanding. 

**email; pheo.n.skye@gmail.com,

For those that would like to only talk about all things concerning Pheochromocytoma.
Helpful Link to learn more about Pheo: http://www.cancer.gov/cancertopics/pdq/treatment/pheochromocytoma/Patient#Keypoint6

Check out my short new Youtube blog:  https://www.youtube.com/watch?v=7xVrkCJrsrY