Tuesday, July 28, 2009

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.

Wednesday, July 22, 2009

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.

Saturday, July 18, 2009


*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.

Tuesday, July 14, 2009

Pain management progress

My nurses have worked as a team with me in working with my doctor, and today, Tuesday we begin a new regimen of two pain medications as I had in the hospital, percocet, and ms contin, alternating the two. This worked in the hospital, and I believe it will work now. *Someting* has to work!! It just has to. Though not heavy, the bleeding continues, and from my several months experience, I believe it contributes to my pain, for *any* movement within the colon at all causes pain. It was the presence of blood that manifest itself with the severe pain, I can hardly believe it is otherwise now with the presence of blood within the colon. At the end of the med control I find myself covering my face in my hand as I cope with the pain. Sometimes I wonder if I'm hiding. Hiding from what? My eyes are closed. It is dark. However, with my hand over my face, it is even darker, closing almost everything out. What good does that do? Ahhhh......oblivion. Total oblivion. I only wish. Yeah, I wish. I cannot even run away. There are no feet and legs with which to run away. Stuck. I'm stuck with this. For how long? No, not forever. Could I take it forever? What is it that it would take forever? Surely the ulcer won't be around forever. The neuropathy might be. The myasthenia might possibly be. It *seems* the worst is the ulcer pain at the top of the list right now, today, with the neuropathy second. Today. I have to make it through today. I'm alone. All alone. Jessica just gave me a percocet at 5:30 so in about 15 minutes I might be feeling like doing something wothwhile to begin this day productively.

No. 5:45. So far it's not working. I shuffle. I squirm. My feet are cold. My toes are freezing. Get some socks. Text Melissa and Tracy to get me some slipper socks from Wal-Mart. Something heavier than socks that stay on really good. That right side. Jim doesn't think I can do a lithotripsy in Memphis. When I think about it, I'm not sure I can do a lithotripsy at all. Seems like my whole body has gone haywire, something wrong with it all over almost from head to toe. Literally.

6:00 a.m. A moan. A cry. Maybe, just maybe it is improving. I know what I am going to do once I am out of the grips of this monster. I'm going to share with you the colors and images I'm going to print, and add to my wall decorations that match what Melissa and I have already put up here. One Day Surgery sent me a card signed by everyone. That was soooo nice. I just wish Dr. Cauli would try to do something to get me back to getting my IVIGs there once again. If I get them through the Muscular Dystrophy Association I doubt I'll get them through St. Bernard's, but we'll take it one day at a time, one step at a time. Another wait and see sorta thing. It's always that isn't it? It's time to go looking.

There you have it. These are the colors I am using on my wall right now. I can print as much as I want, changing with the seasons.

It is getting close to breakfast time. Yeah, the pain is still with me. They are getting ready to strip my floor. A nice diversion. What else can I say about it? Not much today. There's a new nurse training today. Her name is Chrystal. Oh, I am just rambling on now so it is time to draw things to a close. See you later. Hopefully the MS contin will be here soon. Hope.(Just found out it will be 6:30 p.m.)

Been moved from my room. Feeling better finally. Percocet every four hours until 6:30. That'll do, along with the lyrica.

Friday, July 10, 2009

If God keeps on blessing and blessing!

It's all about......

It is always wonderful to visit with friends of long ago, and it just seems like there have been an abundance of them lately, one way or another. Jim and Jocelyn stand out as sent here to us from God, just at the time when we needed them most. They remain in my life still today as friends extraordinaire, Jocelyn and I going way back to when Jim and I were first married, and having to break up that friendship when we moved to Izmir, Turkey. Throughout the years God has brought people into our lives that have been very special. He knew that going into a foreign country was going to be a unique, sometimes lonely experience for us, so He went about preparing new friends for us to have while we were there.....sure, just while we were there.

It was about a year when he brought another special couple to us. Yes, they were among others, but there was something very special connecting us with them, gluing us together. Actually, more than one epoxy, but if you ask her, Pat would say there was one main one, and that would be our son Jim, aka Jimbo. Her husband Jimmy was in the delivery room the morning he was delivered after a long, complicated labor, but she was the one who stepped in there when she arrived in Izmir, and felt a special bond with this baby we had joyously welcomed into our world. Children have a way of changing everything don't they?

We spent a lot of time with Pat and Jimmy that first year of his life. Then came Christmas. We had spent the first and second years somewhat alone, stories unto themselves. But, this year found us decorating, and preparing for the beginning of a traditional Christmas of our own. Ohhhh..... hear that? Traditional. Not a happy word drifting within the confines of our family so much nowadays. Guess it's not too terribly bad, though. It lasted about 40 years or so. I don't remember specifics, but knowing the outcome, Pat probably joined with me in preparing for Christmas, since they spent the night with us to be able to join in with Jimbo's Christmas morning as a *grown up* one year old.

Meet our friends, Pat and Jimmy Sasser today........

Looking for Mama & Daddy

It must be tough to fall asleep one place and wake up in another, not knowing Gigi has taken you several place in between. This is as it was for Ashton tonight (Thursday) while Ashley and Billy went to visitation for Billy's granddaddy. Bless his heart, he looked so cute, I just had to put them here to share them with you. The story goes like this.....

From Jim, "Debbie is keeping Ashton tonight while Ashley and Billy went to family visitation for Billy's grandfather. When they took him to Debbie's, he was asleep. She took him to Penney's [.....], but he didn't wake up. Then, she went to Sonic, but he didn't wake. So, she brought [him] over to the house to visit with me. He awoke just as they got here - he realized Mama and Daddy were gone, and I don't think he was really sure where he was, probably still partly asleep. He got upset, wanting Mama and Daddy - he didn't want Gigi, Granddaddy, or the Happy Feet penguin. He cried for probably 15 to 20 minutes. Here is where he went to the door - I guess looking for Mama. He was a very sad little boy."

"You should have heard him when he was standing at the door and saw his Mama and Daddy coming to get him. The world was perfect again!!!"

Now, there is an interesting twist to this little story. Just to the left of Ashton, down in the corner is where the babies watch and wait for their mama and poppa. We can come up almost any time and see little noses pressed to the glass as they watch our every move, and what's more, you can see their litle mouths moving in a "meow" sort of way. They, too, are happy to see their Mama & Poppa! Is there something magical about this door? Do little girls and boys sense this is where they will come from if they wake to find them missing? Little Missie. I just know this is what happened to her. She woke one day to find Mama and Poppa missing, and they didn't come home at her appointed time. My poor little darling was a mess from that time forward. Yes, all the others watch and wait from that door, those lower window panes. They watch the postman. They watch for Mr. Luther. They know who is friend or foe. Ashton was watching with the same instinct as the babies watch. The magic. Where is the magic that brings us home? Where are the angels watching over Ashton? Be patient little man, the angels are watching over you. No, it's not magic. All day, all night, angels watching over me my Lord. All day, all night, angels watching over me.

Thursday, July 9, 2009

My beginning in pictures

Jim was *down home* the other day, and took a whole bunch of pictures. Among them were these that spoke a little of my early life.... well, I guess you would consider my birth about as early as you could get wouldn't you. The first picture is of the hospital where I was born in Helena, Arkansas. It is also one of the very first places of employment in my mid teens when I went to work there in the laboratory. I got paid $75 month while the "Candy Stripers" were doing volunteer work. I don't know how I learned of the availability of this position, but I do remember going to apply for it in what have been to the hospital administrator in a front office of the hospital. Just guessing. Later, the laboratory director came to meet me, and he took me with him to the lab. Aha! History in the making!! It is hilarious the first few days on the job.....the BIG books he brought out for me to read! After a few days he wised up, and brought on the practical work. Now we were really getting some place. The only problem I can look back and see is that I really LOVED this work, first running tests, and then phlebotomy. But, I had tunnel vision.....nursing. Nothing else doing. But, who knows, maybe I would not have continued to love it so much had I taken this road, and blah, blah, blah. I have to remember my life is what is has been because of the decisions made along the way, so it is important not to second guess anything along the way. Besides, I said this is *ME* in pictures, and not what I might have been in hind sight. *ME* in reality.

*ME* as I entered this complicated world of ours August 27, 2942

Helena Hospital

There are no pictures here of my church, West Helena Baptist in West Helena, Arkansas, but it played an important role in my developmental years. It is also where Jim and I got maried in 1962. There are pictures of it elsewhere, just not here today.

Here is my high school, with no pictures of Beech Crest and Woodruff, elementary and middle school.

Central High School
Graduated 1960
The gift our class left the school

This is what was the bowling alley, where Jim first saw me, and wanted to have a date with me, telling his niece Verne to try to get me one; we worked together at Doughboy. She did; we did; here we are today, 47 years later.
The museum where I worked, and where we sat on the Monday morning before Jim had to return to Montgomery, and I had to go in and work. :( It was then that we decided to *up the date* of our marriage to two weeks later. NOW I understand how these children can make the decisions they do without seeming regard for their elders involved. Did we consider Mama? She went with the flow, and had everything ready. A formal church wedding all done, and wrapped in a pretty bow in just a few days less than two weeks. So what? I was young and in love! Time. What was time? Money? What was it, other than what it was costing Jim to keep coming home for us to be together. WE were what mattered wasn't it? Oh, is this good for me to be remembering. I know of some other nineteen year old girls. Nooooo. I don't want to remember all of this. I was not irresponsible. Nooooo not me. I don't want to take any more closer looks. It's funny. Maybe we were museum pieces before we ever started. Oh, what do I mean by that? I don't know, but it just strikes me as funny that the museum plays a part in the beginning of our marriage. Ha! Make you up your own story if you dare. Funny, funny. A pink building nonetheless. See, it just gets funnier, and funnier.
I think this probably ought to be the stopping point. I'm getting in deep here. Besides, this is the end of my developmental years. Why, two weeks from this point, I am a married woman, no more of this early childhood, developmental years. If I haven't got it now, tough! Too late now.

He did have many pictures around town, especially Cherry Street where we "drug Cherry " to see who we could see, blowing our horns, waving to everyone, depicting my lifetime in the 40s and 50s, but too many for here today. Maybe I just don't want to show the worn down and out look of it all. A reflection? Mercy goodness, I hope not. Can we grow older without looking so what...... worn to a frazzle?

Besides, maybe we aren't too terribly bad..... ;-)

Thank you, Jim, for all the photos

Wednesday, July 8, 2009

Sunday, July 5, 2009

Another avenue for my IVIG?

I had forgotten about talking to the Muscular Dystrophy Association back when I was getting my IVIGs at St. Francis Hospital in Memphis. At that time the person I talked to said it sounded like there was no doubt that I would qualify for treatment under their program. I didn't even think of them when I found out I could no longer use St. Francis Hospital for the treatments, and ended up here in Jonesboro. All for a reason.

Off I go to start going through the papers, and contacting them back in Memphis. Prayers are definitely needed. Also, prayers that I can bring my Caringbridge and CarePage up-to-date.

Jim has found some things I have been wondering about, about where they were, and if they would still be good....CDs that I burned from my desktop computer about seven years or so ago. I tried one out today, and it worked beautifully, and from looking over them, I am retrieving graphic work I have been so hoping to have. Yippee!!

Now off from here to begin working toward this new avenue to see what will become of it.

Saturday, July 4, 2009

On this 4th of July, thank you Jim

This Independence Day, the 4th of July, thank you to my husband for the twenty-three years that he gave to the United States Air Force. Today, more now than ever before, I feel the magnitude of the sense of duty given by him and all men and women who have served in one of the fields of service for our country. This also goes for my daddy, and uncles, with Daddy receiving a shrapnel wound in his back in WWII.

During all my years growing up, whenever he would be in the floor playing with Brenda and me, and he would have his shirt off, I would question him about the deep scar in his back, he would never give me a direct answer, brushing it off as "nothing," leaving it for later in my life for me to learn of the debt he had paid.....the purple heart he was awarded, but never talked about.

I married into the Air Force. Jim served another nineteen years after that, our three children being born at three different bases, then carrying them half way around the world and back, and all across the USA. There are no pictures of his later years here with me I don't think, that I can scan, so all I can give you are the ones he has already scanned of his early years.

The 12 year old boy growing up
Graduating from high school in 1957
On into the Air Force in September.
Here with Johnny Sims.
In the barracks in 1959
Now with a stereo and TV at Gunter.
Good looking isn't he?
See why I was willing to marry him,
and follow him around the world?
The "Chief" today.
Still good looking!
I'd still go with him today.
Just get me out of this nursing center, and off we could go!
I couldn't decide on which picture to use,
so I put both of them here.
Notice he is wearing the same shirt in both.

Thank you, Jim, for your years of service to your country.
I love you.