No more IVIG?

Is Medicare going to stop me from having any more IVIGs? Right now they are refusing to pay. I am being told Obama is saying "no" to us old people. Sixty-six is old to him? Guess I should not talk about something I do not know is fact, and the only thing I know to be fact is the sudden denial of my approval for the IVIG which was doing me sooo much good, and now my myasthenia gravis is worsening. I am in the nursing home for need of physical care, and not because of loss of mental stability. Maybe I'm not as sharp as I used to be, but I'm not a has-been either. There is a lot of life left to me, and I want to use it. But, what WILL become of me without the treatments? I haven't had a chance to talk to Dr. Cauli yet, though I believe he has this information and is reviewing my options of a change in my current medication dosage. I took the extended tabs before, and that might be a necessity once again, as it was too much along with the IVIG. Taking the IVIG out of the picture might mean putting the extend tabs back in with only the one 60 mg in the morning back in.

Imuran is in the makeup whereas it was not before. That has to be considered.

But...... I just like my IVIGs. They make such a difference in how I feel. If only......

I started writing this feeling like I wanted to vent, to rant, but once writing, it was more to lament. If my eyesight gets much worse, I will be lamenting more than the IVIGs. That is making it necessary for me to have things even closer to me than before, meaning..... my.bed.is.full!! This is a whole 'nother topic of discussion. Maybe today will take care of that, though. I think maybe it will.

What this all boils down to is our eyesight is such a valuable thing. There is 20/20 vision beneath the ptosis, but with the MG this bad, a lot of good it is doing me. If you cannot see, you just cannot see regardless of the reason. It's just all so frustrating. When asked if I could have just one thing, I said it was to walk. Now that my vision is so drstically compromised, it would be hard to say my eyesight or my legs. The thing is, my eyesight is helped by the treatments whereas nothing affects my legs. Makes me wonder, is it a toss up? No, I've already learned how to live without my legs, and I need my eyes to do those things, so.....it would have to be my eyesight. It is so precious.

The way I *see* it, I need the IVIG treatments.

These hands used to sew

I was having to use some scissors to trim the edges on some briefs, and by the time I had completed one pair, my fingers and hands could no longer manage the scissors in any form or fashion, the left side now included, whereas before it has pirmarily been the right side.

It took me back to the many, many yards of fabric on which my hands had wielded these scissors. Dress after dress for Debbie; corduroy pants and a vest for Jimbo; one piece outfits for Robert, made with French seams, adding little nylon shirts, which caught the eye of a small town retailer, often costing only $0.75 because of finding fabric on sale for $1/yd; knit shirts for Jimbo, one a blue background with Turkey in red all over it (he was born in Turkey); dresses unimaginable for Debbie, Holly Hobbie she is wearing with Nannie before the Christmas tree, checks and eyelet; endless dress after dress, skirts, everything imaginable for myself; curtains, tablecloths (harder than you would imagine), bedspreads) ..... these are to name just a few as visions have flewn by me as I've named these. It doesn't account for the things I've forgotten about.

I've sewn for others. It was suggested that I become a professional seamstress. No way! I'm too much a perfectionist for anything like that. I have taken items completely apart whenever they were not exactly right. The one dress I'm thinking of in particular I took apart three times before I got one section correct. Once completed though, I loved that dress whereas had I left it as it was, I would never have worn it because it would have been uncomfortable, and probably looked askew too. There is a picture of me wearing it while holding Debbie outside our house in Oklahoma where she was born.

Sewing was for sharing, for home-away-from-home-friendships, some along with a cup of tea. You just had to share your current project with other sewing friends, it was a bonding. Barbara, Janice, Sue, Dearyl.... to name a few at various places around the world at different times. It was much more than throwing two pieces of fabric together, joined beneath the threaded needle, and raced along with a swift stitch. straight or fancy. Barbara and I shared new discoveries in the 60s in Louisiana as I branched forth on my new Singer Touch 'n Sew. We met over the back fence with our problems, our successes and everything to reaching those ends. Michael and Jimbo trying to learn about being friends, and only child, and a youngest of three, both boys 3 years old, with Jimbo getting it in the nose with the bat one day. Michael was the stronger with two sisters to toughen him. Jimbo always the forgiver. A taste of the real world, but it grated on Daddy's nerves; this was his baby boy. :::big smile:::

Scissors. It all begins with a pair of scissors. A GOOD pair of scissors. My Gingher scissors. No one in their right mind would consider using these scissors, maybe my wedding rings, but NOT my scissors! Bought when we lived on base at Blytheville while taking my sewing with knit classes in Memphis (getting there on time was an experience in and of itself). I used Singer scissors before these. These cost me almost $30 at a time when $30 had to be budgeted for, not spent for a meal as it is today. They still find their home in their brown sheath, but not restricted to use on fabric only any longer, for if so, they'd never be used. I haven't seen a piece of fabric in more years than I can remember. Well, one of the last things is a dress for Debbie in which she had her school picture made one year, about the 5th or 6th grade I believe. I'll scan it. *I* don't think it looks too bad, but she probably will squawk at it. Hair cut was compliments of Mom, too. I'll double check it; if I find too bad, I'll try not to embarass her and not post it. Waiting for pain relief to be able to scan it.

So. These hands used to sew. That reality was brought sharply home to me the other day, and I must grieve that loss. It was a beautiful time in my life. It came to be out of necessity, but developed into a happy time of creativity, and release of my soul. The fabric and pattern departments became the first place I would go whenever I entered a dry goods store, admiring new fabric, and new pattern styles. Just writing this about the memories now stirs my soul within, bringing to mind more times than I could ever write about here.

These hands may not be able to sew any longer, but they have left me with beautiful memories, and now they must move on to make memories of another kind. I have gathered my art supplies around me to see if I can recapture my drawing ability as I have my graphic art work. The computer work is okay, but it is not the same as my heart applying pencil to paper the things I see within.

I am gathering photos around me and am going to begin scrapbooking. There is one that Jim found upstairs and brought to me with which I am going to begin. In the past, I have begun projects but gave out before I could finish them. This seems to be the plight of so many myasthenics. I am praying this will not be the case now. There are reasons that I think I might be more successful, and am anxious to make an attempt. So, if you are a prayer warrior, this is a specific you can pray for.

Thank you.

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








Matthew








Kaitlyn








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 again.....it 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.

Ashton comes to visit . . .

. . . . as does Ashley and Billy.

It was an absolutely beautiful day, prefect in all ways. We took forty-four (44) pictures, and I have to go through and decide how many and which ones to share here with you. It was just such an awesome day, even more than I was expecting it to be. They even had a flat in Lake City, and that did not put a damper on things.

Ashley had gone by the house and brought several photo albums, my red rose plant (I'm wanting my yellow daffodils and hydrangea, too), and my dark brown wicker basket set. We just sat around and talked about my room space at first, and what we might could do. Pictures, pictures, pictures. It was close to lunch time so they went on to the mall and Target while I had my lunch here. Twiddle, twiddle. Tick, tock, tick, tock, it's three o'clock. Where in the world are those kids? We've had no visit time. Don't worry 'bout the decor time; it can wait for another day. Oh, where oh where have the big kids gone (the little one will be wherever they are), oh, where oh where CAN they be? They have my debit card, which won't last for long.....oh, where oh where can they be? Let's see.....they had to go to Wal-Mart photo for some developing.....lunch was surely a necessity (you'll see :).....shoes for Ashton......Target with the list we made which was quite conservative when you take Ashley and me into consideration.

Finally. Only one hearing aid in, and I thought I heard small footsteps coming down the hall. Yep! Here he comes bouncing down the hall (I'm in the last room on the right) like he knows where he is going. Oh, if he has been coming along like that all the way, then he surely has been turning heads right and left, smiles and maybe a comment or two. Here they come loopty loo, here they come loopty lie, here they come down the hall, quick now let's see what all they've gotten for me.

I know....let's just take a look.....

Turtle Creek Mall - Food Court
Looks like Ashton's french fried are on the table
and his cup is upside down.

What makes Daddy think he should eat, too?

Ashton's all finished, and ready to go.
Way to go. Don't waste any time, Ashton.

Oh, but Mommy wants me to sit back down.
Better do what she says.

Not sure where they are,
but Ashton is having lots of fun!

Looks like storage buildings,
and Mommy's acting silly again.

They are in Wal-Mart gettig some pictures printed.
Ashton's keeping up with Mommy's wallet.
Mommy's standing in line,
at the photo section at Wal-Mart.
"Hmmm, wonder what all of that is for?"
Baby Emma gets into the pictures, too.But he wants it now!
I bought him a Tonka truck.
I started buying those 44 years ago.Ashton is sad.
Mommy catches a good picture of his sad look.He wants something reeeeely bad.
Reeeeely bad!
Back to my room. Ashley has fixed a picture frame that holds nine pictures.
She has filled it all with pictures of Ashton. I will take a picture of it whenever I am up again. It has a 3-D kind of effect because of the way it is multilayered.

Billy stood there while Ashley showed
him where to put everything. ;-)
Way to go Ashley!
Ashton wanted to help.Ashley is looking at long ago pictures of herself,
seeing things she had forgotten about.
She got Billy to put his chair over beside her
so she could show them to him, too.Ashton was so good to play with his toys. He never got into anything. I think there might have been one time that he started to touch something, but a "no" from Mommy and Daddy, and he came away, and never went back. He played in this small space of my room, and never fussed, or got cranky. He reminded me so much of his uncle. The only thing in the future that *might* require some stronger disciple is with my chair. He *does* love that. He just doesn't know that Christen has already pegged that for whenever I die.....no time soon!Just a snapshot as Ashton and I were playing.
He was all smiles just until I snapped the camera,
but I like this.
Another one that I like.
He is so pretty, so sweet.
He sat in my lap while we
watched Mommy work.
Ashley and Billy; Ashley making a list for a
Sonic order that Billy was going to go get.Just acting silly!Ashley finishing up the Sonic list.
When he got back there was only one thing not on the list.
He had a little boy asleep on his shoulder.
We fixed him a place at the foot of my bed, our feet touching. He was lying on my Razorback throw, but he woke when Billy laid him down. It was all okay when Mommy fixed his Sonic Burger and French Fries, as you can see here.
He is facing me on my bed. Makes me soooo very happy.
He also sat with me in my chair.
Ashley and I watched him eat a french fry without hands.
He inched it into his mouth little by little.
He's a mess!

Now I have a couple of stories to tell.

First, this nursing home alows pets to visit (big hint), and yesterday someone came in through the door just outside my room, with a large dog on a leash. It startled Ashton, and he ran behind where his daddy was sitting, which was still facing the door. He looked at me - *I* am Mammaw he's not seen much - pointed to the door and said, "Dog." So we went through the "yes" dog bit, and then he reached out his upturned hands, and gave the expression with a vocal sound of "go?" He then looked over to the door, back to me, reached his hands out, cocked his head, and with the "go" sound again. He also said dog a few times in there, too. Heh heh... that's my boy. ;-)

We had use of the room most of the day because Thelma was out and about so much. Some of the time she was just outside our door in the hallway just watching him, smiling to him, etc. Well, while he was eating his hamburger he took the meat out. Thelma was inside the door, and she said to him to give her a bite. I was shocked when he took his hamburger patty, and with outstretched arm, offered it to her. I heard her tell some people about him taking to her.

The camera battery charged so I was able to get a picture of my wall so far, and I do mean so far because there is much, much more I have planned to do.

This is the wall that my bed is up against length-wise.
That is a frame with pictures of Ashton,
and on the right is the 65th birthday picture that Ashley drew for me.
I've been trying to get it hung on the wall for almost two yeas,
and am SO very happy to be able to do so where so many can see it.


These are the bookshelves Jim
and Jimbo got for me a couple of weeks ago.
Ashley got a good start at making them look better.
She put all of my perfumes and like stuff in the big
dark brown wicker basket. I liked the sunglasses on the bear.
Everyone has been commenting on my shelves before now,
so they really will now. They look nice.


Okay, this is it. I'm publishing this and going on to put the pictures on Facebook, and also install my new computer, the order of which I am not certain. This is long, I know, but it was such a marvelous day, I just had to tell about all of it. If you have read this far, I thank you very much.

Antibiotics to the rescue!

I started on a round of antibiotic for the bronchitis, Zithromax Z-PAK , two days ago, and already there is marked improvement. I have not coughed one single time today. Better than that, though, I am feeling much better. Infections knock me down more than just about anything else other than a lot of doctor appointments back to back like they were just a bit ago.


I need to see about a follow-up with Connie (ophthalmologist), especially since I have infections in both eyes again, and I never got to have my follow-up from the previous one due to my hospitalization. I sure don't want my eye to get as bad as that right one did back at the end of March.


It is encouraging that I am as functional during this bad spell with my myasthenia. Once the infections are cleared it will be a truer test of how I really am doing, and I am expecting *better than before* results.

Ashley, Billy, and Ashton were here, and I was able to enjoy, and participate in their *decorating visit*, plus play with Ashton. ::: great big smile ::: I cannot remember the last time I have had so many *fun days* in a row in such a long, long time. After a longer stretch, it will be a better barometer, but I just BELIEVE.

So much for now. There is more to tell about today's *decorating visit* from the kids, and it is much more exciting than all of this kind of stuff.

Christen, Odessy of the Mind, and Update

You never know when they are little like this just what all they will do or be. We all have our dreams and aspirations for them. The last thing Christen wanted this day was to have her picture made, and she let all of us know it. That was the beginning. The beginning of making her way through this world, reaching out for a myriad of interests, all of which she has excelled.

She is an avid softball player
loving her sport even when it *bites* her in the mouth
(coming to me "Mammaw, take a picture.")
Add a dash and tumble of cheerleading

Christen excels scholastically earning her way to the
Odyssey of the Mind 2009 World Finals
May 27 - May 30
Iowa State University
Ames, Iowa



Trophy time

Among all those Christen calls "Best Friends"
included is her mom Debbie
and Dad Jeff

Congratulations Christen!
Go team Gosnell!

*MY* Myasthenia is my major problem I am facing right now, though I still do have the infections, and bleeding. The ocular myasthenia bothers me more now than it has in a long time, shutting down the right eye almost completely, with double and blurred vision in it, too. I have needed to wear a patch over it almost all of the time. The right eye is also impaired, and it could be worse due to the extra work put on that eyelid since it is having to do all of the work. Manually lifting that lid is not giving me the clear vision that I usually get. I was due an IVIG April 6th, but that is when I was I began my 30 day hospitalization, getting out at the time I was due what would have been the second one. After coming here to the nursing home, I was to find out that Medicare is not wanting to fund my IVIG now. What? Yes. They are wanting information from Dr. Saeed involving a test performed concerning my diagnosis. Dr. Saeed was not the one who diagnosed me, rather Dr. Constance Smith, my opthalmologist. There are good tests backing up the diagnosis. The test they are looking for was done in Dr. Latiff's office, by Dr. Saeed. Think they will ever get it all straight? For *my* sake, so I can get back on schedule, I sure hope they can. Maybe it is just a normal thing they do, like they checked my disabililty for a few years. We can show them a much worse myasthenic now than when I was diagnosed back in '06. Oh, why do things have to be so complicated? I guess it is because of people who abuse the system, of which there probably are plenty. I guess.

Well, if you are family or friend of Christen, be sure and wish her well as she heads for competition Labor Day weekend. Me? I *love* getting cards! They are lining up alongside my bed awaiting some double sided tape to put them elsewhere on my wall. I have a wall in addition to the one on Facebook!

Till later.....




Edited 5/20/09