Trying to focus on the positive...

I'm sure there are plenty of positives that I could post about but for right now, I am eternally grateful for this:

Yes, It is a box of canned pineapple. I have been eating pineapple every day because I read it helps with RA. (Shhh- I have to admit when I eat it, it makes my joints warm, especially in my wrists. Crazy huh?) Anyhow, I am grateful for the simple box in which I can just open the lid and access my pineapple. I am also grateful for the pop top lids that don't make me wrench my wrists on the can opener to open.

I was even more impressed by the design of the box.

It just lifts right open and folds flat.

Love. it. However, the box for my fruit cocktail. Do.not.love.

It's one of those where the side opens and the cans roll out.

It says it's perfect for the pantry...but my pantry...UGH! My pantry looks like this:

That's the kids offering to help put the groceries away. I needed the help so what can I say really? *sigh*

So to stay on a positive note, homeschool started today in my house. My "classroom" is still not completely set up, but slowly but surely I am getting there. When it's all complete, I'll come back with pics and give you all a classroom tour.

I baked back to school brownies last night. Ohhh were they good. I couldn't finish mine so Hubbins did it for me.

I could sure go for one of those brownies right now. lol

The worst one yet

So the Friday before last, I was not in a good place at all. Not even close. I was having what I thought was a bad RA flare up...but it only got worse and didn't leave until Thursday night. I f'in hate it.

I am in pain. Toes, ankles, hips, wrists, fingers, elbows and shoulders in total pain and just like that- Bam! It's gone. Like a freakin' switch was flipped off or something.

I don't have insurance. Why? Because when I tried to sign up at work they told me I didn't make enough money and referred me to the state and when I contacted the state I make $60 over so I don't qualify...so where does that leave me?

My middle fingers on both hands have started to turn and at one point during the week my finger between my pinky and my middle finger was nearly pointed inward towards my middle finger...this on both hands. I don't know how it works but that part is less noticeable right now.

I'm always tired and I feel sick. I have what I imagine hot flashes feel like. I feel like my head is on fire at times or like right now as I type...my hands are on fire.

It's a total mindf&%*...for lack of a better word that truly encompasses what I feel right now. All the things I have to do that require my hands, all the things I want to do and all the things I love to do. All require my hands.

I keep thinking about how excited I was to be getting away from my dead end job in a dead end town and how finally my life was mine and the world was opened to me. I can't quite see where I lost it all but it definitely feels like it was yanked away in the blink of an eye.

I've always been a fighter, but this time...I just don't want to fight anymore.

I don't see anything worth fighting for. It's all gone. There is nothing left.

Test

We interrupt my RA flare up to make sure BlogHer ads is happy... are the ads still appearing on the main page?

I took the code out of the post template...

I hate feeling this way...

I got a card in the mail Saturday from one of the kids old social workers from our state. It made me feel nauseous. It was just a thinking of you card but...

I was puttering along just fine pulling my house back together when it felt like a ton of bricks had hit me. All my projects scattered throughout the house mid way through... it's a train wreck here. I am rearranging my room, rearranging the kids rooms to move them into separate areas. I'm also still staining and polying my desk and the new kitchen table. The big round one that is supposed to encourage sharing, teamwork, and equality.

The computer/game room is a disaster. I'm pulling Hubbins' computer and desk out of there and moving it into our room and setting up that room as a classroom with computers and everything.

With my RA flare ups, I have to do as much as I can while I can still move because in most cases I lose like three days. Not to mention the fact that mornings are pure sluggish hell for me to be able to get my body to do anything.

I don't plan to start school for my kids until after labor day and end in mid June. They've been working all summer on math and reading and are going to get a break, even if it doesn't coincide with the other schools in the area.

I guess what all this amounts to is I feel fear. I know if they were to come here they would not be happy. They would not like the way I am raising my kids nor would they understand it. They would not like the condition of my home. Even though I am obviously working on things and making changes. Some how, in the past, it seems I was expected to snap my fingers and get things done.

I hate this. I hate it with everything. I am tired of being judged. I hate having to open up my home to the judgement ( Hubbins' also has a caseworker who makes visits.) I want my privacy back and I want to be able to work on my home and feel secure. If I can't feel this in my own home where am I supposed to be able to feel it at?

I KNOW I am probably blowing things out of proportion but a huge part of how my house ended up like this was trying to hide clutter and stacks of paperwork (that I hadn't been able to get to) from the social workers to begin with. My house was pristine when the kids came and as they got comfortable my house began to look, well, like kids lived here. There was constant comments about the clutter, when before there was comments about the neatness and how I did it with 5 kids and taking care of Hubbins.

I'm trying to pull it together. I really am. We've outgrown this house and there is nothing I can do about it but organize and unfortunately with organization, at least as far as I know in my own case, comes what may look like destruction before the end result. Ya know?

If anybody would be a good judge of my home, it would be Hubbins' home health nurses who come out twice a week. I was embarrassed to have them come to my house but as projects are being completed they notice and tell me how well it's going. They also know that I am the only one doing things around here and that I am just one person and they tell me so. One of the nurses did foster care for special needs kids in the past so she knows the drill. Of course, they also see the new projects that take the place of old projects too. I joked with them last time that maybe I would have a project done when they came this coming week.

Do any of you guys feel this way or do you not have this problem?

That Mom...

I know we've circulated posts about what type of Mom we thought we would be growing up. I still have ideas on what type of Mom I might be.

Some of you may be going..."Huh? Aren't you a Mom already?" The short answer...no.

I do all the Mom things but no, I am not a Mom. I am an Aunt. I've always did the Mom things but have been the Aunt. It's all so confusing to me and if it's confusing to me I can't imagine what the kids are thinking. I'm not trying to fill my sister's place, hell, I'm not even sure she had a place.

But I know I am not their Mom and even though on good days the boy likes to call us Mom and Dad, I don't think he or any of the others really think of us that way.

Which brings me to the whole ideas of what type of Mom I might be. I keep thinking if I have bio kids, I am going to do this and I am going to do that. But I worry about what the other kids might think and feel. Will they think that I am favoring our bio kids because they are biologically ours or will they realize or be able to understand that this is the way it is in some families?

I have things that I want for them, keepsakes- scrapbooks and homemade items that I want to make sure they have because if I did have bio kids, they would have those things already.

Many people will probably think I'm wrong, but they don't know the dynamics in my home. I want to start bringing out these things and working on them in front of them and explaining to them what I am doing.

"I am making this blanket for you because if you were born to me, I would have done this for you as a baby."

I don't know if it's wrong, but I want them to know, in case we do have bio children that our children aren't being treated better or like they are special but like they should be treated and all children should be treated.

I also walk the fine line with their disorders because they can't be treated entirely "normal" yet. I don't know if we ever will have that with them. But I know they are going to grow up and most likely have families of their own and I want to model for them what a family should be like, what a Mom should be like.

I know I am failing now. I am so frustrated and confused and unsure of how to approach these issues and how to treat them and I am screwing up. I am approaching this whole situation with too much logic and problem solving and not enough human, if that makes sense?

I'm always trying to fix it and never meeting them on their level of who they really are and not a disorder or not what I need to make sure doesn't happen again.

The other day, I got into it with the oldest over dinner. I'm trying to teach her to cook (something I never learned). I was trying to teach her how to brown ground beef. I left her with exact instructions on what to do while I quickly took care of something for someone (less than 5 minutes) and when I came back she had lowered the temp and done who knows what so she could go back to her room. I called her back out...

I tried to explain to her why what she had done was wrong and what could have happened but she told me "Whatever". To which I set her straight. I believe in nipping that kind of thing in the bud.

She went off to cry and I rationalized to myself that I wasn't there to be her best friend. I only have 5 more years. I've tried to explain that to her. She wants to move out, have kids, etc...

I've tried to explain to her that I am under a tight schedule to teach her what she needs to know. She wants to have kids, how is she going to feed them if she doesn't know how to do the basics? How is she going to be independent if she doesn't learn these things? I tried to explain to her that she needs to have respect and that I am leveling with her because I want her to understand the monumental task that we have ahead of us. I told her it wasn't her fault her mother didn't teach her like she should have but I have my 5 years and I am going to do what I can...

But later, I cried about it. I don't want to hurt her. But I feel like I have to be hard. I have to try and make them understand. I can't let them go on and repeat the cycle. I can't let anymore babies suffer...

Tales from Braville...

Ok, so as if it weren't enough that the 8 and 9 year old started their periods. I had to go bra shopping...for the 8 (Poufy) year old.

At this point, I just didn't have the heart to leave the 10 year old (SS) out. Even though she shows no signs of puberty, I figured what difference would it make if I got her some too? If anything it would probably be good for that one, with her self-esteem and all.

Originally, I was going to take them with me, but while I was already at the store I decided I might as well just get them myself. I am ever so thankful that I did not bring them with me.

I don't know about anyone else, but for me, getting a bra was not a right of passage. I hated it with a passion. I cried. I did not want one. Now that I am older, I understand I really did need one. My first bra was a C cup, no training for me. It took the boys making fun of me on the bus for me to finally put one on, but OH! If only I had also knew the power I could have had back then. I was so naive.

For these girls, it seems like a bra is like an invitation to the big ball by one of the Jonas Brothers or something. Seriously, for those of you who have seen Beavis and Butthead...hehheh hehehhe hehehe. That's the sounds you heard in my house as Poufy and SS tried on their bras.

Yeesh.

I did pretty good for not having them there. I bought them sports bras for starters. I explained to them which way to put them on and sent them on their way. SS's fit her perfectly. She was so proud. I was glad I had thought to include her because it's not very often that I see a genuine smile on her face. I also knew it was important for her to have one before CDQ did. Why it is important is lost on me...

Then came Poufy, Poufy...Poufy...Poufy. I had given her the bra exactly the way she would need to simply pull it over and put it on, I was thinking there wouldn't be an issue. So, when she came out, I was taken aback about the way it was cut and the fit of it. You know how sports bras are wider in the front and a little narrower in the back, I guess for the shoulder blades?

Well.... this one was weird. It was narrow and smashing things and it looked like it might be irregular. I didn't know what to make of it. Why it didn't cross my mind that somehow this child would get mixed up and put the bra on backwards is lost on me. I guess I just assumed since I did all but put it over her head it would be on right. I had her turn around and that's when I realized it was backwards and I broke out laughing. I almost wanted to take a picture, but I thought that would be wrong and besides, I broke my camera.

Once we got that settled and she came back out the bra fit perfectly. Phew!

I still have one more period and one more bra to go and I don't even want to think about what I'll need to know about the boy...

Pressure Sores revisited

I noticed that a lot of people are popping in regarding my post on pressure sores. I just wanted to update about Hubbins' pressure sores. The one on his chest has healed nicely. It is about the size of a quarter now after having been as large as a mango. I am so happy for that. I was afraid it was going to go to the bone. Especially after we tried using silver and found out he is allergic to it and it ate away his skin and tissue.

The second pressure sore that has mostly healed was located on his bottom. It was an existing pressure sore. I don't know when or how because he already had it before I met him and it had healed. This sore heals and then opens. Like a stage 2. It doesn't tunnel. It's flat and basically the skin just breaks open and falls off and then it heals again. We think this is related to his seating system and possibly his bowel program. We will be able to know more after we are able to use the new treatment system for his bowels. I pretty much think that it is the seating system with the bowel program irritating it after the fact.

Lastly, the tunneling sore is still present. It is at 4 cm long and after we started using collagen it became very narrow. The sore for some reason will not heal from the bottom up but likes to try to heal from side to side. I worry about this because of pockets. At this point, the home health nurse thinks there is an infection because of odor. I'm not so sure. I do believe he has a UTI, which is par for the course, so they are treating him with Keflex. The nurse thinks that between the collagen and the antibiotics this sore just might close. I hope she is right. It's been a full year since the sore began. We are ready for it to get the hell out already.

So that's where they stand. I worry because we will have to have a new seating system made and of course, as those of you who have searched this out know...it can be a recipe for disaster. Which would totally suck after healing these sores.

If you are having these problems, I wish for your sores to heal rapidly. I can see the frustration, sadness and at times, anger in my Hubbins and I wish these things didn't exist.