March 28, 2012

I had something in my head to write last night, but for the life of me I can't remember what it is because I got a migraine and had to hide in my bed for a while.  I still have head pain right now and it is annoying, but for reasons I can only explain as, I tend to ramble a lot, I feel compelled to write whatever pops into my head.

So as far as the paper cranes are concerned, while I have no photos right now of them, I have made the mama crane which also needs something to help stiffen the wings up.  We also got 400 more sheets of origami paper, which was surprisingly not as expensive as I thought it would be, although I don't know how much it actually cost but since Kevin was willing to buy it, it must not have been that bad (I'll do pictures later, when I can tolerate the bright lights coming through the windows enough to take them).  With the new paper I have made 14 more cranes.  Since I forgot to look at the last post about cranes before writing this I am actually not sure what that brings the total to, but the plan is to have them flying over the bed because we have a four poster bed with curtains hanging from it so there are parallel bars we can use to hang them, some how, or maybe Kevin plans to anchor them to the ceiling, not really sure, but he said he would do that once I made them.

Kevin was working on a summary of what has been going on with me for my up coming doctors appointment and I was going back through my posts to see if there was anything that would help him.  I found my post about wearing makeup and it does still hold true, I use that a lot to help with making myself feel better, but the way I use has changed.  I'm not sure if I was already having to buzz my hair off when I posted that, but I do know that the more recent the buzzing of the hair, the more likely I am going to be wearing makeup.  I really miss my hair, it had been a huge part of my identity for so long that not having it makes it so that I frequently don't recognize myself when I look in the mirror.  I also realized that I have been doing much heavier makeup than when I first started and the worse I feel, the heavier and darker it gets.  While my mom was here she got me some nicer makeup brushes and I have been using black eyeshadow as liner now, and actually got fairly good at applying it as far as I am concerned, but I have also been using darker colors like blues and greens instead of all skin tone colors like I would usually do.  I still need to figure out how to start taking pictures of what I am doing and some how have them in a document with an explanation of how I am feeling since I think there is a pattern to my use of makeup, but without having documentation it is hard to be certain, but it might be a good clue for Kevin is knowing how I felt during the day since I don't always remember to email him when I had a bad day, but I usually still have the makeup on since I also tend to forget to wash it off as well.

My hands have been practically turning into claws lately because of the joint/muscle/bone pain, which has also made making the cranes and putting makeup on, and trying to type, feed myself, clean myself (for the times when not getting help from Kevin, yes, I need Kevin's help for all showers now), open doors, use pencils, use a mouse, do a lot of things most people wouldn't think twice about, really hard.  I thought the decreasing co-ordination was bad because I kept spilling things on myself, but when it is painful to eat because you can't pick up the bottle with the liquid or hold a spoon in the first place, it kind of makes me want to cry.  Probably the reason why I am typing this now with very little planning is because this is one of the rare moments where typing for more than a couple of minutes doesn't make me want to scream in pain in the last few days.

I might be getting close to starting the slide into depression, but I still don't think I am currently depressed, I think I am just worn out by all of this.  It is exhausting to have to work as hard as I generally have to, just to do basic things.  And it is mentally exhausting to have to deal with the stress of it all so I always seem to feel tired even when I have just woken up.  But I don't think I am depressed because I still enjoy doing things, I still look forward to things when I can remember that we are going to be doing them.  If we go to the right store I can spend a long time just point at things and exclaiming very loudly how cute those things are (particularly with Easter coming up, I love all the colors of this holiday), I still laugh when watching a funny show (love the Ouran Host Club for that), I'm still interested in my Sims stuff even if I can't physically play the games most of the time.  If I am crying and it is not because of pain it is not because I am depressed, it is just because I am worn out or frustrated with how my health is going.

But in good news we have health insurance again and Kevin has already booked an appointment for the next day he has off work.  We will be having to drive a ways to get to these appointments, but we will be going to one of the best medical/hospital/schools in the country and Kevin figures, if they can't determine what is wrong (even if it turns out not to be curable) then no one can.  His plan is to cram as many appointments and tests as possible in as short a window as possible because we may not be able to afford this for a very long time and if the judge in my upcoming disability hearing doesn't believe that I am disabled, we are basically screwed and will probably have to drop the insurance again, unfortunately there is only a month between the first doctors appointment and the hearing so I am not sure if the doctor will have had time to be able to diagnose what is wrong by then, but she already has all of my medical records so hopefully that will help speed the process along.

And now my hands are starting to claw up this is the end of the post.