The stone in my shoe

It's not the big things, but the little things in life that cause the most difficulties each day.

My mouth, oh, my mouth

Oh, my mouth, it hurts so terribly bad. I wonder what in the world it could be. Will it ever stop this hurting so bad-e-ly? Oh, how I hope it will be. I doze off just bar-e-ly, and all of a sudden I jerk with a wake of sharp shooting pains throughout my tongue. It's GOT to stop, GOT to stop! I tell-e-you! 'Ever heard of it? 'Ever heard of it I ask? There is one thing I know of, and it's no fun I say, oh, no I have no desire to have it at all. No desire whatsoever at all!!

Well, my sweetie is here, now, you know, and he will make it all better.

Something new is in the air

Seems to me, it ought to be, something good for me, if I go outside, and do something like draw or make things with my pipe cleaners ..... *how about some books from the craft section on how-to* ..... or whatever it may be while I breathe the air, newer than that that is flowing through my air mattress :-).

I've already printed pictures this morning, and have some more in mind; oh, I hope they don't bring on the food too soon! They can be cut out while I'm out there. I also made a pipe-cleaner mobile that I hang the three from Utah on. Crude, rather crude, I say, but hay, it's of my young'uns, and what could be better!

There's a new day coming

I told you there had to be changes coming right along since the April fiasco, and several things seem to be coming right along. Affordability? Who knows. We'll talk about it this evening. Hang around the bend. Hmmm..... April 5th to, what is today, September 8th. Well, lots of people need or take longer than that to work things out. For today, let's just say, hope, and BELIEVEF this is a bright new coming, a bright new coming, a new day I didn't know existed maybe coming round the bend. Now, could I be able to afford it. Others believe in me; why do I not believe in myself right now?

Our newest addition to our family

Emma Lee Moore
July 31, 2009

My Life II . . . . .

I was just asked if I wanted the blinds raised. I said, "Yes."

My life . . . . .

If life could get any any worst for me, I just don't know what that would be for me right now. The only thing I know to do is to ask for prayers. PLEASE! I need help so badly please. Jocelyn. Please. I'm just about ready to quit life, if I only knew how. . . . . or had the courage.

Getting started

Getting started again. It's hard to do. Things are busy around here. Productive? Who knows? Surely so. I am the one who needs to be catching up. Ooops! They are not the ones who are behind. They are not the ones who have had a timeline before them (that I know of any way) and keep on missing it for one reason or another. Oh, the reasons are good, they even *look* good, but that has not been good enough is not good enough for me. Aaah, that came up dizzy, sputtering for air, but hopefully, you'll get my gist.

Think I'm getting the feel of it all over again, and I'm all ready to start the next page again. Have a dead camera battery, and a missing camera battery from all the moving around getting into here. It is hard to move, be the mover, but, not much hand in the moving, just sending things back home, or over to another part of the room. I still do not think I have camera supplies here unless they are covered somewhere in the bottom of my closet, and I cannot see nor reach that area myself. I'll see if I can figure a way, limited, slow mover that I am. :-( I'll see you later........ oh, my goodness, with much more news and pictures than I've had lately.

Coming up for air

Oh, I am coming up from several days of surreal activity here.

Water, water, everywhere, but..... well, you know how it goes, but just where is that water? All around inside of me...everywhere...some of it staying put, some of it flowing freely, all of it not healthy, all of it causing a problem...One problem of it staying put, I have a picture of right here filling my foot to the point that appears to the point of bursting wide open. Just can't get that water to move on out of that foot. And where did that bruise come from? No idea. They told me in the hospital that I would bruise easily at the slightest touch of most anything, and this surely fits the bill. This surely fits the bill.

The free-flowing water.....it comes from my face still, no less, soaking everything before/below it, whichever you might call it. I folded a hospital towel which would make it several thicknesses, stuffed it in the upper portions of my gown/shirt, later to find the towel, gown, and whatever else I might have used there, totally drenched with a gooy, ooy, slimy, wet-with-something- or-other.....nasty. It is also coming from my legs. All of this has occurred previously; not new. Same places as before, just not as profuse in my legs right now as previously - yet. I say yet because when I was in the bathroom last night I noticed it was trickling down to the floor which it did do before, pooling below my wheel chair. It even did it in Dr. Saeed's office to the point that he was unable to run my special emg test, different from the one he had done in Dr. Latiff's office, he had scheduled. He looked at the pool of water, and asked, "What's this?" and we told him we didn't know, but we hoped he could tell us. Nope. Again, another shrug of the shoulders of the many unanswered questions I have endured the past many years.

I am tired of all the unanswered questions. I am going to pose the questions I have, right here. There is no one I have to worry about offending. I am also going to speak how I feel about staff at Skilcare not listening to me for I have a very strong feeling of paying my way here. They are not the only place in town, and if they do not want to listen to me, I will look some place else. NOT that I would be quick to do that parobably, but that I do not feel a commitment. I will get to work on the Muscular Dystrophy Association supplying my IVIG tests for me. I am just now realizing there is many more that just one fish in this great big sea. Maybe not in this corner of Northeast Arkansas, but.....well..... Let's just say that I think that my feet were not like this when I came to Skilcare, I have spoken and spoken about them, and have received no response of any kind. A nurse asked me how long they had been this way, and I said "weeks" and then realized I had been here for "months", it dawned on me it was while on "their" watch this had all occurred, well..... now I am looking at things today. Looking closely.

I am going to keep my feet no matter who gets their feelings hurt or whatever the correct phrase should be.

I'll be back in a little bit. Took a little nap.

Pencil colors, cell phone, ENORMOUS feet, 288 blood sugar (that's down), more antibiotics, sleep,.....

.....First of all, where do all these things fit in? First of all, colored pencil colors..... fun sharpening 120 colored pencils! Then I'm running my Internet with my cell phone...so smoothly.....My feet look like they are about to burst with deep creases running through them, with minimal walking causing extreme pain (right Pat?). .....228...My current blood sugar after a good diabetic dinner two and a half hours earlier. ..... Antibiotics for the continuing UTI, and Sleep, mooooore sleep.....all day I've slept uncontrollably. While changing meds, I'm having to tritrate the one I was taking while going back on the previous one, so two of the same kind, both of which can cause drowsiness. You have that? I understand what I was trying to say, and that is what is important I guess. :-) On top of all of this, is my visual impairment from the MG. It is soooo bad now. I can barely see the monitor itself in front of me. I just keep pulling it closer and closer to me, memorizing more things on it as I go, double vision, what it feels like, rather like learning to type by touch.....each finger so many places to the right, left, up, down..... you know, just by feel. I just read that description, and it sounded crazy so I do not expect you to understand; guess you have to be here, experiencing it. Anyway, off I go! More sharpening pencils, and doing some drawing, practicing reaching around the keyboard.

Developments

*MY* Myasthenia - You can have it, you can keep it, you can put it in a safe... no, not safety place... how 'bout chop it to pieces, bury it deep in a foreign place, and never more remember where it is. No more of this; no more, no more, I tell you. I don't have the energy nor strenght to cope, to dwell with the drop that is going on. No treatment, no life. Today I'm going to drop everything I can into a basket or bag, and stop my attempt at building a home of my own. here at Skilcare. Dr. Diamond just didn't know how difficult it would be to create me a *home* here. Just sing with me, "Just sittin' on a fence post, sittin' in a corner, tryin' to be-a good girl, but not bein' good at it." Well, it may not have fit the rhyme, meter, tune, etc., that was going through my mind, but don't fret about it, it had my head a-bobing, my mouth a smilin'. Funny that giving up should bring a smile to my face. It's sure much easier to just lay back and let the world go by slowly, leisurly than buck any kind of system or anything; you know? It's been easier to just do whatever I could with my computer, and not get involved with producing anything regardless of the ideas that pop up in my mind. My surroundings are not large enough to manage my thoughts and ideas. God, are you there? You are in control. Right? Right in my book, but I can't find You. There is only one light left on in here. Are You that light? I woke this morning to find myself incased in total darkness. The one light had been disquinished. Lord? Lord? Where are you? Lead me Lord. What are the rules? One day, no rules. Next day, somebody wants some rules, then there are rules. Thank you God for my blog where I can just be free to say what I want to say, where nothing is right nor wrong. I'm not even right all the time, nor wrong all the time. Hahaha Some crazy thoughts, huh? Well, you might not understand me, but God can, and that's Who matters. HE knows my heart, HE knows my turbulence. HE knows ME. HE knows *MY* Myasthenia. HE knows "what will be will be."

Depressed? You bet! Hope? I'm wavering. So many variables are jabbing spears at me, and I'm not doing a good job at dodging them. Hemp. Never was good at playing dodge ball. this has been building since I switched from Prozac to Cymbalta. Another of those "if it ain't broke, why fix it?" That was for a specific purpose though, to try to help my feet, and it seems there has been some improvement there, at least some of the time.

Pictures. Why do I use so many pictures? They do a BUNCH to lift my spirits. The sun shines bright so I think I'll go looking for some of some kind. Today might be a good day to move the rest of my Photo galary over from the other computer. What you say?

Well, I found this bear selling these fresh farm eggs to this little girl, or is she a little lady? She has baby chicks. Wonder if they are for sale or give away? Cute. Wonder what else.

After this, starting over sounds like a good idea. Pictures, just pictures. They comfort, both mine, and graphics. Feels like they fill the inside of me like music did once upon a time.