the way it is

Yesterday I went on a rant- albeit poorly edited- but it sure felt good to blog again. I have a lot to say and I'll be bringing it as often as I can.


I love the idea of bloggers sharing their thoughts and getting comments. I read blogs but I haven't truly combined my love for writing with my interest in blogs.
I blogged before, but I wasn't very committed.


Now, the only thing that will interfere with my blogging is my health. Some days I am in too much pain to move (and think). I will still be writing a lot about my experiences having an incurable autoimmune disease (well, more than one) but I want to just write about whatever is on my mind.


I'm always open to suggestions. I might just post a poem or other personal writing I've done. This entry seems like a mission statement. It isn't really. It's me babbling again.


Thank you to those who are still supporting me.


peace & love,
sunee

Well, I planned to post an edited version but it is no longer available. I will do better next time.

It was just a rant anyway!


- Posted using BlogPress from my iPhone


- Posted using BlogPress from my iPhone

Well, I said I was to write and I didn't. I'm more dedicated and I plan to blog at a few times a week. I enjoy blogging.

Having a serious illness I have noticed people say the most insensitive things. Sometimes it even feels intentional. "I wish I could stay home in bed all day!" Really? Because I wish I could work! It isn't a privilege to have an incurable disease with chronic severe pain. What do they think, that I'm partying all day, upstairs in my room, and that I'm loving going up and down the stairs?

Another good statement with some punch is, "I could never stay home all day. I need to work to ker


- Posted using BlogPress from my iPh

Location:home

Although I'm not a big fan of ranting, I feel the need to today.


Now that I'm so ill I have empathy for ill people. I really understand. I don't know if people empathize or even understand me.


I have a very aggressive autoimmune disease, Sjogren's Syndrome, as well as two others and fibromyalgia. The daily pain, numbness, loss of balance and on and on keep me from doing much of anything. Not that I'm complaining. I've settled into my new life. I never stopped going before. In 11 years of teaching and directing  I only missed five days of work. Two were for traveling to important family events.


After three years of being homebound while getting sicker and sicker, people still express to me (in a superior tone) how they could never stay home all day. They would be BOREDnand it would drive them crazy.


let me assure everyone that when you're as ill as I am you can't do anything. I don't get bored. I'm always trying to ease my severe pain, acid reflux, migraine's and the list goes on. I've had all of the fancy IV infusions and I still just get worse and worse. I hardly have time to be bored. 


I have learned to enjoy the TV, my laptop, iPad and phone, and a  decent personal library. I keep everything I'm using that day at arms length and put a few heating pads and a hot water bottle on the places that hurt the most at that time.


I like TV. I'm not ashamed to say it. I find shows with good writing and a few that are guilty pleasures. TV helps me get my mind off of the pain. It's simply this- I am too sick to work and I had no idea what it would be like to be this sick. If people want to think they're better than me because they go in to work with a cold or a sprain, let them. They wouldn't last a day with this kind of pain.


I promise to be positive next time =)


peace and love,
sunee