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
No comments:
Post a Comment