Saturday, April 18, 2015

I saw this and I had to write and write and write.....

A graphic I saw on facebook tonight





This is my every night. just wish something different might happen every once in a while. you know? yes I know i just got back from a wonderful wonderful vacay!!! however, here I sit, watching grey's anatomy trying to get caught up... maybe my kids are right. ? maybe I'm not really living. maybe i'm surviving. i just feel so old lately. not enough energy or umph or whatever. maybe do you think i'm set in my ways? arggggg i should be filled with happiness for my wonderful trip meeting so many wonderful family members!!! seeing my niece and nephew and spending the day with the... seeing my sister, spending a day with her... getting a few minutes with my Godmother.... I'll take any time I can with my family... i'm glad to be home. dont get me wrong. i'm soooo glad I went!!! I'm SOOOOO GLAD I went!!! Grateful to my family that paid for me to be able to go! but then I come home to the same old same old. I dont know. Am I asking too much? Am I expecting too much? I think maybe I am.... I guess if I had someone to sit with me and cuddle with me and watch tv with me... maybe I wouldn't be so much like this.... i just dont know why I can't make ME enough for ME. I'm trying to learn, to expand my horizons... to better myself. yeah. it's only been two full days that i've been back from SoCal and Mexico... maybe I am expecting too much from myself. I mean, I am chronically ill. I do get tired very easily lately. I can only do so much with my time and energy and I have to keep watch over my limited amount of energy...

why does everything in my life, in my body, my mind, my plans, why do these things have to have PH hanging over it? I have been sick with Pulmonary Hypertension for 16 years.... SIXTEEN YEARS! I can say I have been struggling to breathe, to survive... but now I'm wondering, have I been fighting to live? and have I really been living if I spend so much frikin time online.. watching tv, crafting? I took some amazing pics while I was on vacation. I mentioned to a friend that one of my uncles works for the government in Mexico, in their tourist dept. They PAY him to travel and take pics of his surrounding areas. Why, I asked, Can't I find a job like that. her answer was I could if I really tried. but of course, my response was, I never went to college, never studied photography, dont have any experience job wise, taking pics... and of course, I'm chronically ill. who would want someone who's chronically ill to work for them? 

these are things that I think about all the time. honestly. I do want to know if someone would want to hire a person who would call in sick let's just say 1/4 of the time. so that would be, what? let's say for shits and giggles, 2 days a week, they would be too sick to work. ok now let's look at me.... with my pulmonary hypertension, i can say that I barely missed work. however, with my fibromyalgia, panhypopituitarism, chronic pain due to sciatica and so many more other autoimmune diseases, I started having to miss work 3-4 times a week. yeah... no one would want me to work for them.... 

Of course, you dont say that in an interview do you? I'm all about full disclosure from the get go. I want them to know what in the heck they are getting into with me. you know? It's also illegal for me to NOT say that I'm disabled. In fact, in all my jobs, as far back as I can remember, I have had to call into the IRS automatic phone line to answer some questions, including: Are you disabled and receiving social security disability insurance? why yes. yes I am. and then they take you to a live operator who asks you all kinds of other questions. so they will know. and if you don't tell them, they can fire you for it. soooooo I'm all about full disclosure. this is me. this is who I am and how I think.

I also would not want to wait to tell someone, that I was interested in, that hey, and btw, now that we have been seeing eachother so such and such a time, i wanted to let you know, I have a chronic, progressive, incurable disease, oh and btw, it will someday kill me. let me just throw that in there too. you think? no. could be why I've taken myself off the dating sites. I dont know.

So Friday night,, twelve twenty-three a.m. and I'm about to turn off these lights and go to sleep.....

GN!