Update

Again I am sorry for the long long wait for an update. We have been moving and my computer went and we have no money for internet.... This list could go on forever but you get the idea. Now on to the updating.
We moved to Jasper AL. The place I am originally from and the place where Gwyn was living. Now Gwyn is in Birmingham (an hour away). I am so excited for her and her new school. I really believe that it is a great move for her, her father(Daddy Zach) and soon-to-be step-mom. They have a beautiful apartment and have great jobs. Couldn't be happier for the three of them. Of course that means We can only see her on the weekends. And we still have to share with her Nanna. Pout. Any time with her is wonderful. We have plans to move closer once we have the money. Or rather section 8 has the money.
My little sister, Taylor, has moved in with us. She is 19 and going to college. She got into some trouble. She is doing better. We just want her to have a soft place to fall and be around people she knows support her. I am very proud of everything she has done in the past 4 months. She has done a ton of growing up. Can't wait to get our three bedroom place so she can have her own space. I can't imagine what it is like sharing a room with a 9 and 10 year old.
Rory started school today. Homeschooling again this year. We are very happy with her progress and believe that we have made the best choice for her. I know there are lots of people out there who believe that I am not doing right by her. Believe me when I say that if I notice she isn't up to par I will put her in school. Until then we will keep doing it our way. She is happy and creative and can express herself well.
My health:  I am now seeing a palliative care dr. She is WONDERFUL and UNDERSTANDING. I believe I am finally on track to live a fuller life. She is giving me tools to help me be more active. Not just pain relief thru pills but a wide range of options and programs. I am going to take advantage of everything they offer. I want to be as involved in my wellness as I can be. I am already seeing results with what little we have started with. She knows my age and doesn't fault me or hold back because of it. In fact she sees it as a reason for me to get as much help as possible. That way I can enjoy my daughters childhoods. I can participate in my own life, instead of watching it go on while I lie in bed. I am so much more content. Even the set backs seem easier.

Now for the bad news of my illness. I tried to die on my 30th birthday. I went into septic shock and for a few hours we watched my blood pressure. There was a nurse by my side the whole time and once I was at UAB there was a team of nurses. Not only was I in septic shock my lupus flared and I was completely unable to move. My pain level was around 1000 and they can't give you anything if your blood pressure isn't stable. I had to have an Art line put in. Its a device that is place in your wrist to monitor your blood pressure constantly, it is more accurate than a cuff. I had an emergency central line put in my neck. We found out that dopimine doesn't work on my. So they had to find something else. They aren't use to that. I ended up spending a week in the hospital before they felt that I was well enough to leave. I am greatful that I live thru my birthday. Hope it never happens again.

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I think I am becoming a cynical person. I keep getting annoyed with people who can't deal with their issues. People who over react to every little set back or change in their lives. Maybe it's easier for me since I am so young and have been sick for most of my grown up life.
I wanted to work. I wanted to have a nomal life. I wanted a life where I could have some money. I wanted something to give to my girls. I didn't get to have that life. Not even for a little while. I have never got to enjoy the comfort of knowing you have enough money all the time. I am thankful that wahat little we have we make work but this isn't the life I would have choose for myself. There is no way I could have changed my diease or how it affected me. But I don't sit around crying about it. I learned how to live my life with it. Even if it isn't the funiest or most out going life. Its what I can do with what I have.

One year later-
I was dx a year ago with PAH. I have made it a year. Been thru alot of meds.
It's nice to have made it a year but its scary to think one years is over.
This past year has been a rollercoaster ride. It still hasn't settled down. Still have lots of things towork out.  I hope that I have lived more this past year then I have the last 27.

The goal is to have another year in which I can do some wonderful things. I have a few things that I have to work on, that need to be done asap!! Guess I just need to get to doing them.

I am sorry for the break. It actually wasn't due to health. The computer I am now working off is very broken. I have a 3 by 3 square to work with.
I saw my doctor friday and she thinks my chest pain might be from IBS. I will start a medicine for that monday, go have a ct, and start seeing a new doctor. Yippie. I understand you should treat the issue not the pain, and I am all for that but something has to give soon! I haven't slept a full night in two weeks. I also have a new issue, I sweat. Not a litte sweat. I soak my pillow, clothes and sheets EVERY night. Not to mention I do it during the day, which I am sure is sexy. Soaking wet hair.
I will try to post more often but this computer makes me crazy so I am not sure how well it will go. If I don't get the chance: HAPPY BIRTHDAY to Andrea!
HAPPY BIRTHDAY to my Gwyn!!!!!!
Happy Father's Day to Zach and David!!!!
That should get us thru this month... oh and Happy Birthday to myself... I made it to 29.

Spent a busy day with the girls. We went to the park/splash pad, then to my grandmother to do crafts for VBS. It was tons of fun. But man am I useless now. I sat in the shade the whole time I was at the park. Which is kinda not fun, I wanted to go run around in the water. It was nice to watch the girls play.

There was a nice moment with my grandpa today. I was at their house and he came in from outside, stopped and asked me how I was doing today. I just nodded in my "Well I'm alive way". Instead of taking that answer he asked what it meant, he honestly for the 1st time was worried about how I felt. I love my grandpa and I know he loves me but never has he ever show that much compassion. It really made me feel better.

We are headed back to Opelika till they come up with a section 8 voucher for us. We have been approved but there is a waiting list. I figure the 1st week of June we should have one. Until then we are going back to where our stuff actually is. They will send a letter and we will have about a week to come for an appointment and get our paperwork. Then we can go apply at different apartments. It'll give us a chance to pack our stuff up and let David's mom get her house back together.

Going to watch TV with the girls. I am soooooooo ready to relax and not really think about anything.

I want to thank everyone who reads this blog. You guys are wonderful. I have been getting lots of feed back and its very helpful. Its nice to know that people are enjoying this blog.

Happy news we got approved for section 8. Government help for housing. They give us the opportunity to find a place to live and then they help pay the rent. I am not above getting help. As far as SSDI I am not ashamed about getting it. The reason it is there if for people who can't work. If I could work I would. I find enjoyment in a job but I can not work. Physically ther is nothing that I would be able to do for full time employment. Now I am getting to spend time with my daugthers and husban, I couldn't ask for anything better.

 .                         Gwyn at her Girl Scout Ceremony.

Gwyn and Mrs Cornett.  



 

Rory and Nana Pam.

We had a wonderful weekend. We spent Saturday morning at Art in the Park. A local arts and crafts show. They had everything. We looked at wind chimes made out of forks and spoons. I am now on the hunt for spoons, I am going to make my own wind chimes with just spoons. We also saw a women who made journals out of old books and jewelery out of the pages and with Scrabble letters, it was really cool and looked easy. I will be seeing how easy it is. I now have TONS of new ideas. I went to the local thrift store and bought old hard cover books that intend to make into journals. I also got a bunch of uber cheap picture frames, I am not sure what I will do with them but they will be put to good use.  

Above: Rabbit- She painted this butterfly to put in the local hospital.

 Below: Pooh's painting for the local hospital.

They are to help my people happier. I have to admit that I have smiled before when being wheeled thru a hospital from seeing similar paintings.

My three most FAVORITE people EVER! They are my life.

Sunday was also wonderful. We took the girls to Church. Pooh's 1st time at the new Church. I don't think she has ever been to Methodist before. She was perfect. She sang the songs and listened. I was super proud of her, and of both my girls. They then went to lunch with their nana and I got a few hours alone with David. Its a nice way to spend a Sunday afternoon. When they came home they had homemade cards for me. It was just nice to know they had thought about me. Such wonderful, thoughtful daughters. They are going to be some awesome people when they grow up.

Now we are waiting to hear from the food stamp office and section 8. Hopefully they will both get back to us asap. We honestly need our own place like yesterday. I would like to be out by the time our host takes his vacation in June. If not we may just have to go back to Auburn til after Pooh gets back from Georgia in July. We will just have to wait. Its been a long time waiting.