I hate my lawyer, I hate my judge. I know they don't know my personal situation but do they have to take forever. I don't see what the issue is now, before there might be some question but now it's kinda cut and dry. Arg.

So this weekend we are doing Red, White and Tuna as a fundraiser for Grandview Pine YMCA. I hope I have enough energy to make it thru. While sitting here my daughter is play "South Pacific. She is Bloody Mary... maybe we do to much theatre. Or maybe she will be an actress. I am also trying to get things together for Fiddler on the Roof. I have been worried about my ability to do it but I have to trust that I have gotten a great team together. I have to trust that they will understand when I have to lean on them more than most. I hope that all my pre-planning will make it easier for me. Its on the top of my bucket list!

MCTD

I talk about how much lupus sucks but I don't often get to talk about my Mixed Connective Tissue Disease. Today it hurts. Today I feel like I'm dying. my hips are killing me. They are throbbing. I can't keep my balance. I can't walk to the bathroom. I don't usually cry from pain. I didn't even stop cracking jokes when they where digging around in my arm. But this makes me cry. I hurts sooo badly.
I'm trying not to be depressed but I can't seem to find the other side. I want to be on the other side and be okay with everything. I want to figure out how to live my life. Dying doesn't scare me. It's the living between now and then. Or rather the lack of living. j How do I start moving forward. I have been waiting for my disability to start getting on our feet. Now that has already taken three years. I'm still waiting. Bucket list aren't cheap. There are things I really really want to do. There are things.
"The woods are lovely, dark and deep
But I have promises to keep
And miles to go before I sleep
And miles to go before I sleep"

20G

If you are a chronically sick person you may have some idea what 20G means. I went to the ER on Thursday. They needed to get a 20G IV started so they could run a very important test to make sure I didn't have a blood clot in my lungs. They tried 13times to get on started. They even brought in a sonar machine to get look at deeper ones, which still didn't work. Ended up not being able to do the test. They had other tests that can do about the same thing. So... all that to know that I have HUGE bruises all over my arms. I look like someone beat the crap out of me or that I could possible a junkie.
Having chest pain is so much more complicated. It can't just have pain. Now I have visits to the ER, with lots of poking and more pain. It's really scary to have pain now, it could be something really really dangerous. Like I was told by the ER dr, we have to work you up like an old person, and consider everything. "With your history....". At 28 I have a history, yippie. Now every pain is a 10hour adventure at the hospital.

Things I Miss...

I miss mornings. 6am... I miss early mornings. I use to be a morning person. I loved mornings. I MISS them. I never enjoyed midnight or late nights but mornings. Something about early mornings. There is an energy in the air, all the possibilities of a whole day ahead. I miss getting up, enjoying sitting outside and then taking a shower. Thinking about all the things I can get done that day. 6am use to be the best time of the day. Maybe it just feels like the rest of my life... I don't take time to get up and think about all I want to do that day.
I really miss 6am

Sometimes good things happen.

I got a call yesterday. A friend of the family signed us up for a possible hardship scholarship thru a homeschool provider. We got the scholarship! It includes 150dollars in credit for their store and a 500dollar check to spend however we need to. I knew we were going to homeschool no matter what but this just makes life so much easier. It is wonderful to get good news in the middle of all this hard stuff. Thank you Renae.

I go friday to see if there has been any improvment with my PAH> Please Pray.

David went today to Publix. They are currently looking to hire a meat cutter. He put his application in and now we wait.

Today

I want to go to church. This is the second Sunday in a row that I have woken up to a totally broken body. My mind is wide awake, but the body is laying in bed unable to move. I miss the days when I could choose what I wanted to do.

I also want juice. I bought some awesome juice a few days ago. I was really looking forward to it. I get a huge glass, I know I am going to enjoy the juice. NOPE... instead it feels like someone has set my throat on fire. My stomach didn't stop hurting for an hour. The saddest part the juice tastes soooooooooo good I had to try again. Yep same result. Pain!

Rabbit got to go to a bday party yesterday. They went rollerskating. She had a blast. I was very impressed that her legs didn't her while she was going to sleep. She woke up this morning well rested and ready to go!! Couldn't ask for more. Rabbit also got a nice suprise this week. A good friend, Judi, brought her clothes, make-up and other girly things. Judi also got Rabbit a hair cut, her nails done and a teeth cleaning. It's wonderful watching Rabbit be loved by others. This newest health issue has been hard on her. She understands far beyond her age.

Life goes on

Went to my cardiologist (who won't be my cardiologist after today.) This is the guy who told me in February that basically I was lazy. I was sent to him in Feb. due to my symptoms and he did a heart echo and then a stress test, according to him he didn't find anything wrong. Then by June I was in full blown PAH, like thru the roof pressures. So my rehumy asked me to go back to him. I agree, but guess I shouldn't have. He comes in and doesn't have a single clue whats going on. He thinks that I was dx before he saw me in Feb., therefore he has forgot that he called me lazy. Then informs me once you have symptoms the disease is full blown, and I said that I have had symptoms since December at least. He doesn't seem to realize that means he totally missed a serious disease and now I have to pay the price. I ended up spending the night crying. I hate my Drs are apathetic, it just kind hurts.

But I don't have time to think about that. Rabbbit's birthday is July 26th. I have to figure out what to do for her, with her, or buy her. I asked her and she almost had a melt down. I guess you don't ask a kid who never gets anything what she wants. It's like their is a back log of things she would like to have and no clue what to ask for 1st. I was thinking going out for a movie and food. She isn't sure about it. Me and David are going to try to go tomorrow morning and see if we can find something that just says 'buy me'. I wish I could get her everything she wants. Next to David she is the most understand person. She gets how sick I am on a level that adults don't care to understand. She is the most sweet and caring child. I wish I could just give her the world. Kids and their unconditional love :)

I miss my Pooh. I don't know what to do about it anymore. What is the best thing for her? Do I leave her alone or do I jump in both feet? Breaks my heart to have to think about these things. I have messed up when it comes to her. There is no way to save the past but how to I figure the future. Whatever future I have.