Monday, May 25, 2009

This, that, and more

Yes, it's been a few days, but I'll do my best to wrap it all up in a neat little package. One, or maybe two, depending on how prolific I get. If the last pain pill works better, then maybe I can report better. I have now found out that my nurse for today did not give me my usual dosage. She has since done so, and I am beginning to show improvement. In addition, I am also installing software on this computer, plus moving selected folders that contain data that I need for completing this article I really do want to publish this as soon as possible.

Everything I do is taking longer because the Optical Myasthenia is so much worse, and for a longer period of time than I have ever experienced before, and it is because I am not taking the correct dosage of Mestinon first of all. I am only taking 60mg Mestinon 3 x a day at the nursing schedule, and Imuran, I think is 2 x a day. If they want to stay on this kind of schedule then maybe he needs to put me back on the extended tabs. They were too much with the IVIG, but since there has been a snag in Medicare's approval right now, then we need to make some medication adjustments. I am going to call Cauli's (Julia: if she doesn't know, she'll help me find out) office as soon as I can after the holiday, and see who I need to contact to fight this. Everything I gained over the past two years, two years exactly to this weekend, is rapidly going down the drain. My arms, legs, and vision are worse than ever. I need to see the opthalmologist for my eyes. Infection that I had in my urinary tract spread throughout my body, sinuses, eye, etc.., and the Z pack did not clear my eyes (why should I not be surprised that it did not kill off the UTI infection either, but that is only my assessment from years of experience with these, plus my urine has darkened once again).

Ashley, Billy, his mother Sheila, and Ashton were here yesterday for her to help me some more unpack the bags Jim had brought over, plus she went through all of my drawers, clearing them of necessary items, then leaving them folded neatly. Next we went through my closet chosing some things to send back home, and then she put like items together for me since vision is so bac it is hard for me to see in there. Wonder if they still make those stick on lights like I had in the closet on Shields Lane. That may be one of the things I ask them about providing me with.

I have gathered all my art materials around me to attempt to regain my drawing ability. BIG task set before me I know, and I'm not sure, but then again, I could not remember how to pick a color from my graphics program, and look at me now. Well, there is nothing in this one, but in other posts you can see that I am gaining more and more each day. I've even written a resizing script, my first script to write so far, and I am anxious to write another. I even edited it to make it interactive at one point.

Since it is Memorial Day weekend we had a mini picnic in my room (read: cost less than going to get fast food to bring in ;), but they still brought me my supper tray. No problem. Billy will eat it. We didn't eat as soon as they got here, but I had Billy go ahead and eat the chicken and mac and cheese. I had eaten the stewed tomatoes before they had gotten here. Billy went about eating the rest, but not alone........

Why waste time with the spoon when the fingers are faster.

Eating's over, work time is here, helping me load the trash bag

All the while Ashley is working on the closet.

"Mommy, don't you want me to help in this drawer?"

"Look what is in here."

THERE! All done in this drawer!

That's all the work now for Ashton.
He's pleased as punch!

Jennifer has also sent me some pictures of the three Ohio great-grandies, and GREAT they are! And I think they are beginning to think this taking posing for pictures is nothing but a lot of fun. Just take a look at them.

Alexander (now 1 year old!), Kaitlyn,Matthew



Well, now, I got through, but I did not accomplish my goal of getting through earlier in the day like I wanted to do. I drifted off to sleep. Who me? Oh... yes. I have to get rested up tonight so I will feel good tomorrow because Jim is supposed to come visit me and have lunch. At least those were the plans the last time I talked to him day before yesterday.

I am not sure how well I am going to be able to publish in the up coming days because I can just barely see my monitor right now. There is no way to predict if my eye sight will get better or worse. :::shrugging shoulders with a smirk on my face::: I will do my best to at least post an update, especially if there are any changes. Taking 60mg of Mestinon three times a day is not going to hack it for me. It will just help me get by, but not improve my functionality. Worsen? Faced with stressful situations, the number one exacerbater, or becoming overly tired, infections, etc., I would be more prone to an MG crisis. I am staying in bed and staying rested. There is nothing more I can do to help myself. I am surrounded by the things I love to do, and I'll be in heaven if I can get me a printer going. We cannot find the installation CD to the one I have here with me.

So, till we meet may be later today, it may be tomorrow, it may be next week, but just know that I love all that *I know* who read me, and for those whom I do not know about, leave me a note or send me an email. I LOVE getting mail. Uh, oh, I just heard a loud thunder clap. Hope we're not in for stormy weather tonight. It has been so rainy here lately. If you have a chance, I found that I like the old fashion snail mail of cards, too, and I am practicing my writing by sending thank you notes to those who send me cards or notes or whatever.

*My* Ragdoll and me send you our best wishes, and ask for your prayers for me.

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