Sunday, June 29, 2008

Being nice and kind pays off

"Just for you, Sleeping Beauty," said Ana light heartedly as she brought me a large plate of salad after bringing me the *regular* for lunch today.

Ana has always been very special to me ever since she began working in Food Service. I think the first thing I ever asked her was the pronunciation of her name, and she liked it that I pronounced it correctly. I continued showing an interest in her, and she just opened like a flower. So appropriate. That smile of hers is just like a flower. Little flower. Petite flower blowing, tilting in the wind. Now then when she brings my food tray, and I am sleeping, she will sing, "Wake up Sleeping Beauty," as she sets my tray down, and will make sure I waken before leaving my room. Quite a personal service rendered!

As she left my room after breakfast this morning she said in her cute little El Salvadorian dialect that she would bring me a salad to augment the skimpy meal that was coming for lunch. My mind pictured a bowl of salad.

Lunch time came.

She brought my regular lunch plate in, then left the room.

In a moment she returned, surely a dance step to her feet as she bounced in on her toes. In her hand was a dinner plate, one of those big smiles on her face, one just like the you see in the picture above, which was taken when she came back to pick up trays at lunch.

The plate was overflowing with a yummy, 'licious looking salad, a salad filled with just the right things for a diabetic to eat! It took a split second for me to realize that was *the salad* she said she was going to make for me! Oh, my goodness!! Did she ever!!

Thanks, Ana.

Kindness begets kindness.

Striving for a world without Myasthenia Gravis

Friday, June 27, 2008

Thinking of my special nurse *Ernest*

I woke to a very good morning. How was yours? We usually feel like if the sun is shinning, we have a song in our heart, a bounce in our step, that we are off to the start of a good day, and look forward to what is ahead, usually with a zip more energy than usual. Whenever you feel this way, do you ever think about the people elsewhere that are not waking to such a good day as you are? It's hard to isn't it? There have been times that have been bad day for me, and I've thought about all the people out there going their way, unaware of the sadness I am experiencing. There's no reason they should know what my family and I are going through, but I am aware of the world still going on as normal while ours is coping with a hardship of some kind.

Today is one of those days that my world was spinning along normally, maybe even a bit ahead of schedule, and then I find out something that just knocks it totally off its axis, sending it into an awful *whirlwind* out in space somewhere it seems.

Shirley, from the lab, whom I'm always so glad to see, brought bad news today. Ernest (and here ) is in the Med, having been in a horrible accident, a head on collision with an 18 wheeler.

She said he had had two brain surgeries, and other operations, both internal organs and some extremities. She is to get me some more details, but it does NOT look good at all. Not at all. Oh, bless his heart. It is just so hard for this to sink in as reality! He is such a beautiful person. He has told me that whenever I am here and he is on duty, that he will be my nurse, and he has been. . . until this time.

He works extra shifts to make the money to put his children through college, and to provide them with what they need to get down the road today to get started there.

I did not actually say it, but I am in the hospital right now where Ernest works. Guess I was just assuming you figured that out from what I said above. But just say the word/name Ernest, and you get an immediate reaction. He is in everyone's heart. I am told his mother comes from Dyersburg to Memphis to the hospital where he is, every day. When I expressed concern about her driving that road, they said someone drives her down here. They are collecting a fund for her, for the expenses encountered by these trips. Oh, I tell, you, it just makes me shaky all over thinking about Ernest and his whole family.

Those children. No doubt he knows about taking care of family, and family stuff. If you haven't gone back and read those links above, please do so, for they were written at the time.

I could just go on and on, but I guess I would only be saying the same things over and over only with different words, and in different ways. If more comes my way, I'll be sure to post an entry here. There are some interesting baseball tidbits that Jim knows about that I will have to edit here later. An interesting man altogether. Loved by all that I know.

Remember Ernest. He needs our prayers.

Love to you Ernest. The Lord, the Great Physician be with you.

Ragdoll Billie

Sunday, June 22, 2008

It's 4 the Kids

Pass the site on to others

See The Kids

Cure Childhood Cancer

Cancer's Hell

Cancer's Hell part II (Still fighting)

Cancer's Hell part III

Cancer's Hell part IV (Little soldiers and angels)

Angels in Heaven and on Earth

Friday, June 20, 2008

Dining with Ashton

The many faces of dining with Ashton
6 months old
Ruby Tuesday
Jonesboro, Arkansas


Striving for a world without Myasthenia Gravis

Thursday, June 19, 2008

Here we go to St. Francis - Bartlett for an IVIG - hopefully!

The status of my receiving an IVIG is as being on the old merry-go-round at the Fairgrounds in Memphis, up and down, round and round. You know, that was many, many years ago, like in the 40s. Okay, let's not digress

I have not written here yet about all that happened with the cessation of my receiving my IVIG at St. Francis - Bartlett Hospital, though I did make many attempts at doing so. It just never seemed to gel into anything acceptable to me. Much has been going on, most of it I *get it* but there is yet some I do not. There is just so much here, there, and yon.

It has come to a point now where it is not only easier, but probably more advisable to pull it together now, and it may even come with that pretty little bow.

I am not sure of the time sequence, but we had received paperwork to be filled out, steps toward reaching approval for getting an IVIG done on an out-patient basis at an infusion center. Jim wasn't sure what good it all would do, but he completed them. This is the area that I do not recall, nor understand clearly

The stage was set. It was Thursday, June 5, 2008, and time for me to go back to St. Francis - Bartlett, Hospital for my next IVIG on Monday the 9th. He would be having his prostate surgery the following Wednesday. Shortly after time for the office to be open, Jim called Dr. Seed's office to remind Sheila about sending Dr. Saeed's orders to the hospital for approval of admission. He had to leave a message for one of them to return his call; it was not long before my cell phone rang; it was Dr. Saeed. He talked to me a few minutes, explaining there would be no IVIG, and some explanation of why, until he got to the point that it would be easier for him to explain and discuss it with Jim.

In a bit, he came back over to where we had been having our morning time together, but he did not sit down. Instead, he told me there would be no IVIG the next week, nor the week after that, nor after that, on and on. What? It is at this point I have found it hard to keep going on with telling everything. I was just so shocked, and trying so hard to absorb what he was saying. Nothing could stop the sudden burst of tears. What would happen now? For a few moments I sobbed. I felt as if I had been stabbed in the heart, and all life-giving blood was draining from me, all hope flowing with it. A flood of emotions flowed through me, one after another. There was even one of gladness that I was not having to finish packing to be gone for a week. That was but a fleeting one, not lingering. Otherwise, the quietness was deafening, bound to burst any drum. It is stuck in my memory of Jim standing there in that loud quietness, finally saying, "I'm so sorry." On one hand it seemed he was apologizing that he had to go on with his surgery, that all was "go" for him, while the floor had just dropped out from beneath me. His empathy was deeply felt. It was, I guess, one of the strangest moments in our lives together. I told him to let me have my good cry, then I'd be ready to face whatever it was we were facing full force. That was good to a point. Problem was, I had no idea what we were facing. All I had gleaned at that point was that I was banned from receiving IVIG treatments at St. Francis - Bartlett Hospital, paid by Medicare. The way I understood it, if I could and wanted to, I could pay for it myself. Sure. No way could we pay for any of one, much less one each month. What to do? What was going to happen? It was scary; frightening. I had been hit with the realities of MG in a sudden burst to begin with, and here I was still learning all the ins and outs even now. It did no good to think about things; I didn't seem to know enough to even think about. You cannot think something through that you do no even know about or understand fully. The main thing that filled my thoughts were "no more IVIG treatments." And the way I understood it, I needed these for any chance of improvement. Here was Jim getting ready for the hospital. Peg also has cancer and in need of surgery. Then Saturday morning I got an email from Aunt Naoma that Uncle Harry had died. In between were other of life's _______ , feeling as if I were in the middle of this hurricane, being spun round and round and round, going deeper and deeper and deeper as if there were no end in sight. Sometimes even today I get that *spun out of sight* feeling when thinking of all of this. So, what is "this?" Where did *it* come from, and where was *it* going?

The packing for the next week was almost finished; I just lay back on my bed. We talked, bringing up one thought after another. Jim knew that some of what he was being told as the *reason* held more than a grain of truth to it as far as Medicare was concerned.

One of the first things Jim did Friday morning was to send an email to some he knew in he health care business from here, and all about the area, asking if any knew of any infusion center. Before the work day was finished, he had made a contact. It is so interesting to see throughout the day how things dwindled down to a single center near to us in Jonesboro at St. Barnard Hospital. We closed our eyes that night with a glimmer of hope way down at the end of the tunnel.

Here, we had been making that trip to Memphis, through traffic, and all sundry events from Shields to Kate Bond, spending an average of a week in the hospital, then making that return trip home, hoping I felt better than when I had entered the hospital the previous Monday. If I felt good enough, we usually would get a good meal out of discharge day. It was a big chunk out of my month. Now here we were talking about 50 miles to Jonesboro, home of Turtlecreek Mall that Ashley and I seemed to be drawn to like a magnet.

What were the trade-offs, though. Nothing squares away equally. If accepted at the infusion center, it would be out-patient, meaning a drive to Jonesboro every day for five to seven days, depending on how I handled the treatments now, and they had to be five or seven days. Could we handle that drive that many days in a row? Ha! I told Brenda I could just sleep in my clothes if we were due to be there very early.

The woman at the infusion center located at St. Banard's called Jim early Monday morning, the 19th. One thing she mentioned was that they required a local neurologist. Aha! I *do* remember that much. Jim called Dr. Saeed's office and left a message for him to call the center. He had not been aware of if. One of the things that he had learned on Friday or earlier in the week, I think it was, was that I had been approved by Home Health . . . again, *I think* that is where the approval was, but they had a few misgivings due to the side effects that I experienced, especially the one last month. Was it safe for me to have the infusion outside of the hospital, not close to doctors and medical personnel. There is still more talking to be done about that. What is the risk to me?

One of the criteria Jim learned was that a local neurologist is required. He understood that the neurology clinic was filled, and getting an appointment, being taken as a new patient would be quite difficult. Jim called Dr. Saeed to have him call the doctor at the clinic.

With moving down to Debbie's, Jim's surgery, and other things, it has sometimes gotten difficult to keep up the days and dates. Debbie has been picking up our mail, and Jimbo picked it up earlier in the week, and took it to him. In with the mail was a *new patient* information sheet from this neurology clinic. It is our summation that 1) Dr. Saeed has called the clinic/doctor. 2) I have evidently been accepted as a new patient with an appointment given for 10:00 a.m. the day following receiving the mail. 3) Unable to keep that appointment due to the lateness in receiving the notification, Debbie was to call and change the appointment.

Now, another thing . . . The time required between the last IVIG and the next one that Medicare will pay for has elapsed, and this coming week will fulfill that requirement, meaning I am eligible to receive an IVIG next week beginning the June 23rd! I have not talked to Jim today about it. This is all through yesterday, the 18th.

Debbie has been handling all of this on our end for Jim and me, or I should say *with* Jim. It is also time for my port to be flushed, and she has had to take care of seeing to arranging that. Since I *should* be getting my IVIG next week, that will take care of that. I have not talked to her yet today; she is just barely home from work, and at the ball field right now. Tonight or tomorrow will bring more and clearer news. Maybe tonight since I just got a call from Jim. I'll have him look over everything I've written.

Debbie said the orders were received effective for Wednesday. I'd really like to begin Monday, I guess out of habit, but just being able to get it is really good. Now if we can just get things settled with the Jonesboro clinic, and doctor there.

I should say things are looking much better than they did two weeks ago. Having new pictures of the great grand-babies make lots of things look better. Here is our princess Kaitlyn on a summer day in Dayton.

And having things going well with my honey helps, too. Here he is the morning after surgery. I'd say, the gentleman does look nice in a robe, doesn't he? He's always claimed not to like wearing one, but he may not have a lot of choice once I get him home. I doooo like the way he looks, and this is before his recuperation. hehe

Striving for a world without Myasthenia Gravis

Monday, June 16, 2008

Mestinon check-up

Difficulty breathing woke me early Monday morning. That is not something I want to fool around with, so I took 60 mg Mestinon. Nothing more than that, though, no 180 mg timespan, for the rest of the day, and my vision has remained good except for the dryness of the Sjogren's. I will still keep on with the daily check, assessing and adding the medicine depending on whatever I am experiencing.

Now that was a short day, for here we are into Tuesday already after just a few sentences. That bespeaks of the busy-ness around here Monday! All of that brings back memories of the days when my three were young, all teenagers, and each with friends of their own.

Tuesday, I waken at noon when Debbie comes home; it finds me feeling a little on the tired side, but that could be from several sources. It was a busy night around here last night. Well, not in the earlier evening. These girls are as bad as I am for their late hours, but I don't do noise level the way they do!

Being careful, I thought it wise to take 30 mg of Mestinon. Call it a compromise. The 60 mg gave me too much blurriness, and tears Monday. The vision is still good, though. *That* is so encouraging to use my eyes this much and be able to keep my monitor sight so good and clear. At home I'd whine with my cheese about my loss of vision to Jim, "Am I ever to be able to see clearly, ever again?" Right now as I look at my monitor the letters are clear except for following a blink. There is tearing, now . . . another sign of maybe too much Mestinon.

The tremors. No shakes for at least two days now. That was a notable difference when beginning the Mestinon - hand control. Oh, it wasn't like someone normal, but so much improved. I could write. I could sign my name. Jim and I were so excited when we returned to Dr. Saeed's office after being on the Mestinon for a bit, and told him what a difference the medicine had made. Little things. Little things to some, but to some, it is mammoth! Isn't it strange how nice, important seemingly small things are until they are compromised, and then are returned to you in at least some small measure.

Here it is, later in the day Tuesday, a little after 5:00, and there is yet another a difference with the eyes. Blink. They blur, then it takes longer for them to clear, unlike earlier today and yesterday. The hour is now late, and I have had fun reading and doing photo graphics today and tonight, creating my first video from photos. Along with the fun, unfortunately blurriness has increased. Headache booms from behind the left eye and on down as usual with lots of background noise adding to the mix. Noise solution: remove hearing aids. Silence. Total silence.

Hush-a-bye baby. Baby's got a bottle. Baby's happy now. Baby's quiet. All is quiet from the playpen. Adorably sweet baby. Signal for calling it a day.

Oh, it is so hard to stop, though, especially now, after my ability is returning with such fervor. Oh, wow! Now, I remember why my graphics's program used to be the first program I would open, and it would stay open as long as my computer was running. We're talking non-stop. The excitement is as it was when I first started taking the Mestinon, and the changes that came with that, which I described earlier.

Striving for a world without Myasthenia Gravis

Saturday, June 14, 2008

Determining Mestinon 60 mg and 180 mg Timespan dosages for me

My Man on the mend!

Sometimes mistakes, forgetfulness, and other human factors can bring unexpected positive awareness. Such is the case of my Mestinon dosage.

One of the interesting things about Mestinon is that while it brings wonderful results in so many ways - oh, how well I remember when I started using it how exciting it was to write, see better, smile, and other things! - just going over your correct dosage, brings on the exact symptoms as MG itself.

I have been concerned about the seemingly worsening of my MG in the past few months in spite of the IVIG treatments. Yes, there is improvement with each one, but, I don't know, Jim and I have talked about little there seems to be. However, that is one thing I knew from the beginning. TIME. It is a slow process under the best of situations, and here I am trying to do this with so many things going against the tide, yet expecting what I hear of so many others accomplishing in a certain amount of time, knowing all along that we are as snowflakes, each one that different, and I should never be expecting any more than that individualism.

This brings me to yesterday, Friday, April 13. I had one of those medication forgetfulness days, except for the help Debbie gave me. Amazingly my eyesight almost could not have been better. Do not misunderstand or get me wrong, it was still impaired, but nothing like it usually is with the diplopia and virtually no tearing at all, with no crusting of the lids and lashes. For comparison, I took a 60 mg last night. Instantly there was tearing, double and blurry vision exactly where there had been clearness almost all day before.

What do I think about this? I am wondering if my MG has been improving some, but it has been overshadowed by the other things going on, like the diabetic neuropathy, and the other things. Not realizing the MG might be responding to the IVIGs, with the Mestinon still at the higher level, putting me over *my* top, it was putting me in *overdose* level, thus still keeping me MG active. Visually, and some mobility in my bed were actually better than they had been in a long time. That one 60 mg was taken late last night, gave me visual disturbances afterwards, but now I am experiencing much improvement. Reading my monitor is not progressing toward near the vision loss that usually occurs. It is now 9:31 a.m., I have not had anything at all, and my vision is better than it normally is. If I take any at all, I am dropping it to no more than 30 mg. Dr. Saeed said I would be the one to judge how things are working, and this is my judgment. The IVIG has been working but being missed by other things in the boat, the side effects of the IVIG itself, but the Mestinon has not been lowered accordingly allowing for those improvements to be seen either. I am going to be checking some of the mobility today.

I have not done any walking, but *I* believe while I was up last night that I could tell a *bitsy* more sturdiness. Imagination? We'll see. Plus, I played with, and then helped Ashley with Ashton on my bed last night. He had had a rough day, was fighting sleep in unfamiliar surroundings. I was privileged to give him a bottle, and feel those sweet little hands explore my face - especially my nose :-). Aren't those just the sweetest little things in all of the world, all the while those big blue eyes staring into mine.

Interestingly, I only had to take something for pain just once yesterday, and that was later in the evening when there was a lot going on, and I was up and down doing stuff for myself, changing clothes and more, and it brought on the headaches. Not a bad change from four down to one. Hey! It was only one day, but in my book, that is called a beginning.

So, here we go today. Unless MG symptoms should worsen, I am going without it. No foolishness. In fact, I am breathing better than I have in quite some time. I think I feel up to getting up in my chair, and doing some unpacking, and organizing of the things I need on a regular basis. I hope it works out like I think it will. That excites me because of it allowing me a tad of independence, and not having to depend on Debbie so much when she is so tired.

Let's see. Have I forgotten anything. They've been out, and I hear George barking so they must be returning, and that will sap my memory for sure now! Ha Ha! I do need to go down to the house to get my clothes Jim said he left hanging. It must be my pajama tops because when I went to change last night I could find bottoms and not tops, and he most always puts tops on hangers, and he sent her and me a text that he had forgotten to bring those hang-up things. Shame on him, can you imagine . . . leaving to have cancer surgery and *he* forgot something.

Notice how *orange* is creeping into things here lately? Maybe we need to check up on that.

Granddaddy and Ashton
Aren't they a pair!
Toodles you noodles!
Striving for a world without Myasthenia Gravis

Monday, June 9, 2008

Getting things ready to go

This is the week that we move out again. Jim has surgery Wednesday, then goes to Jimbo's Thursday following his discharge from the hospital. I move down with Debbie and Mark.

Everything we could think of has been happening the past few days. I was supposed to be going in for my IVIG today, but that has been denied me. Yeah, I cried when Dr. Saeed told us about it. What a shock! I first started writing about it, but no luck. Couldn't do it. Put it aside.

Saturday morning I got word of the death of my closest uncle. I knew it was close for him. He was a person who, if things were happy, he just made them happier.

It just seemed that a whole lot of stuff was happening for me at the same time. I was trying so hard to take care of my blog, but just could not finalize anything the way I wanted it to be.

I wanted to write about the IVIG mess that has been going on. Maybe better after things settle. It was all in my head, but I just could not get it to be right.

I hope everyone enjoyed softball over the weekend!

Striving for a world without Myasthenia Gravis

Wednesday, June 4, 2008

The painful part of softball . . .

Quick, quick! What is it do you think? Not my blonde hair thirteen year old granddaughter? Her mother had called, and I heard that drop in his voice, though not knowing what/when it was about. Serious? There is no doubt for why would a mother cancel the plans of a thirteen year old!

Well, my goodness, I heard him say. Hmmmm............ I have to wait until he is off the telephone to get all the uglies, and this must be one of thosies, so it might be a while before I hear a while. Frightening! So here he comes with the verdict of the 13 y/o soft ball player. Hit in the face with the soft ball! Oooooo! My. Hey! Maybe cause for use of orange today.

That is cause for blog pictures for sure!
Her request. Her fulfillment.
Her fave pic. Did you ever have a favorite *smashing* picture, and you made sure you had a picture made in it? Love it, don't you?
My girl!

One other picture we took for good measure

Toodles Christen
Love, ya!
Striving for a world without Myasthenia Gravis

Monday, June 2, 2008

Have your graphics and myasthenia, too

There has to be a reason not to get a subject posted when it takes you several days to get it done. I know what I want to do and say but can cannot get it done.

Blurry eyes = zero to difficult artwork.

Such has been this subject. I am beginning to wonder about this one. :: Sigh :: The blur of ptosis makes art work difficult to accomplish. Simple. MG with its ptsosis makes artwork near to impossible to do. I am doing it, though. How? I don't know. All my work is my work I've shown here so far has been cell phone pics, redone by me. You will know what a myasthenic can do!! Let's start, and maybe, just maybe something will follow. haha At first, I had that all I'd done was cell phone pics. No, I've done more than that. I have done photo restoration, and much more. Actually, I've taught computer graphics of different levels. ok. Enough of that. Now, let's zipppppp for some fun!!

All of this - the hit of MG up me - has been a real thorn in my flesh; my artwork affected by MG, very painful indeed. I play the piano and organ - . I draw. I paint. I do computer graphics. All graphics appearing on this blog have been done by me. Almost all of the pictures on this blog are cell telephone pictures enhanced by me. Many times I have barely been able to see through the fog of diplopia, the haze.

This is a good way -- a new baby in the family or a blog or the other three great grand children -- to share with you on how you can can continue to share after myasthenia and other illnesses that rob you of your abilities. We talked to Jennifer (that makes me want to put them up here), and it makes me want to work on some of their younger pictures, and put up here. Makes my fingers itch to work and work and work. Only, to me it is not work. It is pure joy.

I can barely see my monitor. There is almost always a blur; a haziness over it. Yesterday a Granddaughter came in with a cut to her lip. That will be separate post. She is waiting for this one. I believe, but I just wanted to let you know that all graphic work is done by me of slighted vision, always until the ptosis improves.

I'm so confused now, let's stop, start again!


Striving for a world without myasthenia gravis

(Ohhhh, this has been the worst job getting done!!)