UGH! I am so ready to just give up. Its always something. One we gave the housing authority our new number two days ago and they called our old number. Thankful that number was still active and that someone did text me and let me know they where trying to get a hold of us. Now they need a number that we gave them once and took us a trip to Millbrook to get, that they've lost. I don't know how to get the number back. Our car will in no way make it to Millbrook again. The transmission is trying really hard to go out on in. David is having to go to the housing authority office and go thru our file to see if he can find the number. My thought is you have already called my old landlord when we applied for public housing, why can't you use that information to process our section 8? And second how do you lose a number? Why isn't it write on our application? I was feeling good about it this morning but now I am not feeling so great about it. Of course all this stress is starting to take a serious toll on my body. I have no clue what we are going to do. Just makes you want to cry, really really hard. Fingers crossed David will go up and find the number and everything will go just fine. If not, who knows. Who knows whats next. We honestly can't afford a place, we have looked and looked. No one will let us rent for what we can actually afford. Living with my in-laws isn't a big deal, is just that my in-laws live 3hours away from my daughter that is the issue. Is kicking and screaming an option?

We applied for section 8, which is government help with paying for a place to live. We already applied for public housing but they have no flats, and no apartments with bathrooms on the 1st floor. They really couldn't do anything else to help us. They said we should apply for section 8 and see if we could find a place without stairs on our own. They way it works is they give us an allowance for rent and possibly also utilities. We go find a place that we can afford with their help and they pay them every month. This is our last option. We have asked and begged and done everything I know how to find a place. They said two weeks, so it shouldn't take more than two weeks to find out if we are staying or heading some where else. I am so worried that we are going to have to go back to Auburn. It would tear me apart to leave Pooh. This has been the best two months of my past year. Even Fiddler on the Roof doesn't stack up to seeing my daughter 5days out of the week. I would live in my car to stay close to Pooh but I can't let Rabbit go thru that. She needs her own room. She needs stability. She needs the best just like Pooh has.

I have been having some serious emotional swings. I have started becoming depressed from stress. I feel like our lives are out of control and we can't do anything to fix it. We are having to put everything into others hands and hope that they can help. Even going to Church hasn't helped calm me down. Usually I can go to RSUM then I am all better. We went to First United Methodist of Jasper. It was beautiful but I didn't feel the connection. We are going to go again next Sunday. Going to try for their 8:30am service, they say it is more upbeat. Less traditional. Maybe that will help me. If not I am not sure what I am going to do. I hate Prozac. I haven't taken it in YEARS.

Starting to pay for my lupus/fibro/chronic disease fog. I have lost two phones in two months. I can't seem to keep up with them. Lucky for us we had someone donate a new phone. All we have to pay for is the monthly card, which would be normal cost for us. I have never realized how bad the fog really affects me. I've been getting migraines recently. I wonder if it is related to the fog/lupus involvement. I need to go to my Rheumy. She wants me to come in for my 6mintue walk before we up my dose on the medicine I take thru the pump. On a very bright note the site pain is much better.

Alrighty off to help with bath time and then maybe a game.

Still no place to live. Still no clue what we are going to do or should do. I can't imagine being away from Gwyn but I can't leave Rory homeless. It's not a choice, its not fair. It makes me crazy. It make me want to kick and scream. I want to go and yell at the people who get things given to them and still aren't happy about it. UGH. I get the concept of life's not fair, and I don't expect it to be for me. My girls deserve to be close to each other and it just seems like that isn't going to get to happen.

Rabbit got her ears pierced today. She cried but still let them do the other one. I am proud of her. She didn't get up and run away. She did great. It hurt more than everyone else was telling her it would. I tried to be honest and let her know that it did hurt a little. She also got her hair dyed. She said she wanted to yesterday and she picked out the color. Its cute, and red. Looks like her natural hair color. Pooh did a 'science' experiment from school. She did a volcano, with paper mache and baking soda and vinegar. We did it together and it was way to much fun. We built it and then painted it. Tons of fun. She said her whole class loved it. It was just so nice to share it with her. That we got to do it together. Mommy is good at school stuff and enjoys doing the projects with her.

My pump site is still killing me. Hurts like hell. I really have no clue when its going to stop hurting. When it going to ease up. When am I not going to have to be totally doped up just to get off the couch and go to the bathroom?? I need to get to my Drs. I was suppose to do a 6mintue walk this week. Still haven't been able to get down, doubt my car is going to make it. This is where being here is not good for my health. There is no one here who will take me in for free and do my 6mintue walk to see if this medicine is helping at all. Of course its been a month and a half and I've had to change my site 4 times. When it is suppose to stay in for 3months. Doesn't sound like a fix to me.

"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"


sometimes I just want to go to sleep.

May is Lupus awareness month. We keep giving all these disease/disability/disorders months to which we should make extra effort to be aware of them but it doesn't seem to be working. Until I had Lupus I had no clue that May was awareness month. Now that I have it I guess I need to be helping spread the word. I need a cure as much as the next. More importantly my daughters need a cure. I also believe if you are following this blog that you know a little something about Lupus or care a bit about it. My goal this month is to tell a few people every week what Lupus is. I extend this challenge to you! Tell someone you know about Lupus. Doesn't have to be some big explanation but just make them aware of the disease. If you want to be really helpful try telling a women of childbearing years who is of a minority, since they are the ones most likely to have Lupus.

And that's the end of my PSA. I woke up today and checked my bank account, then freaked out. I was suppose to have 600 dollars in my account and it only had 101. I about lost it. We don't have a phone so I could jump on the phone and find out what happened. I spent half an hour trying to figure out where the hell my money was. That is the only income me and daddy David and Rabbit have. Then I realized that today is the 2nd, my check posts on the 3rd. AH HA! Then that also meant I got extra money this month. They are now paying for my Medicare part B. So instead of 600 a month I will now be getting 699. Happy dance. Of course I know all of you just realized that we make no were near enough to support a family of 3. This is why we need such a cheap place to rent. We can make a dollar stretch but even we can't stretch what we don't have. On the bright side we have two leads today on possible places to rent. Fingers crossed, prays sent up.

I hate my pump. One of the medications for PAH is given through a pump. The medicine causes pain, lots of pain. Eventually you 'go numb' and everything settles down. Until that happens it hurts. Makes it hard to do ANYTHING, other than lay around in pain. Even sitting here today is killing me but I can't stand being 'lazy'.

Time for school.

Help?

Its been a long while. I've been trying to do some living. Now I am thinking I want to live and tell everyone about it while I still can.
Sometimes it takes awhile for bad news to sink in. Like hearing that you have Pulmonary Hypertension and your live expectancy is 3 to 5 years. Oh and now we are going to put you on some shitty drugs, that hurt like hell, and try to make you last a few more months. The only 'cure' you can't have, because you still have SLE. I really try not to re-think about these things. They are just facts of life for me at this point.

There is good news, wonderful news. I now am living with both my daughters. Pooh and Rabbit are in the same town and under the same roof (until we find a place) They are so very happy. As am I!! If you have a long life ahead of you then by all means follow your dreams and be the person that will make you happy. You're kids deserve the right to see you happy. But if like me you find yourself with fewer years than you can really think about its time to realize that sometimes what makes you happy is just having your family, raising your kids is more than enough. I want to spend my last few years getting as much mother/daughter time as I can. One day they will wake up and I will no longer be here. I will be memories to them, I want to make sure they have enough memories to last them a lifetime. I want to know that they can always remember my love for them, my hugs, my kisses. I want them to know that they are my happiness! They are the top of my bucket list.

Now on to my...

 Bucket List:

1. Raise Pooh and Rabbit!
2. Go to Saint Simons Island/Jekyll Island Georgia with my family. Take family photos on Drift Wood Beach.
3. Get another tattoo. This one on my arm reading "The woods are lovely, dark and deep. But I have promises to keep and miles to go before I sleep"
4. Have a vacation in the mountain. Anywhere in the mountains, for a few days.
5. Go to ACT and SECT.
6. Take the girls to Disney World.
7. Have David get legal custody of Rabbit.
8. Take one weekend alone with David somewhere new.
9. Go to Ren Faire and/or Dragon Con.

Last but most unlikely-

      9. Go on a few month RV trip with the girls, across as much of the USA as possible.

If anyone is interested in helping me and my family enjoy a few of these adventures please feel free to email me at dizzydownward@yahoo.com. I tried to keep my list very realistic and short. I am sure there are a million other things that I could put but these are the ones that really matter to me. I want as many different and fun memories as possible for my family before I go.

These are my dreams, but for my reality we just need a home. We have been homeless for two months now and we still haven't found any thing. Its like no one will give us a break, or have a heart. Everyone is worried about their money. As far as the government, they don't have any flats available. I am unable to go up stairs and all they have are townhouses. So I'd be stuck on the second floor. How do you make memories when you can't even leave your own house? 

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"