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.

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.

Ptosis and infections continue

Same old story, and I don't see much chanch of it changing significantly unless medications are changed. *My* Myasthenia has me immobile because I simply cannot see things around me, even on my bed. Being immobile due to my legs has been workable because I could compensate with doing things in my bed, but when you cannot see, well, that causes a problem. I am still getting some things done, but it is taking longer, and it is more difficult. Don't ever let anyone ever tell you any different.....your eyesight is very important. I still have good vision, it is just that I cannot get to it due to the ptosis, that eyelid muscle impairment from the myasthenia. I have thought about taping them open, but that can make the lids tender. Then there are the UTIs. Whatever would I do without them returning, and returning. Actually, I feel they never go away. This is what I battled in the hospital, and had the IV antibiotics (shown at right) for. Wonder if I'll ever be able to squelch them with oral meds? Probably not as long as I have the kidney stones. It is a scary thought for me. An irritating one, too. I get soooo tired of treatments for everything, and *no treatments* for other things. I sound like I cannot be pleased, but it is my body that is telling the tale. I am just relating it.

A new predicament.....my feet. My swollen feet. Very swollen feet. It is my sister-in-law's fault because she asked about my swollen feet and legs. They were fine at the time, and low and behold they swelled just after that! Peggy, Gladys Louise, I'm coming for your girl! Just joking. She's my favorite s-i-l, my only s-i-l, and I really do love her! Now where's my picture of her when I need it. Not loaded for easy retrieval I see. Have to fix that for future reference.

They first swelled like this three years ago, and it was like moving a mountain to get them back to normal. Now, here we go again. I'm not sure I have the energy to wrap, rewrap, rewrap these feet if that is what is going to be necessary. Ugh. They *did* get me a new pair of shoes last week; that was nice. While the shoe department was full of beautiful shoes I would have loved to have tried on and chosen from, ::sigh:: this was the only pair I found that would work, covering only my toes, leaving the swollen, painful part untouched. Once determining they were what I wanted, I then wore them out of the store just like the little kids do. Well, it was that or keep going around in my socks. I looked in the mirror as we were leaving the shoe department, and as I did so, I took a picture with my cell phone so I could see how they looked. Some people claim they only use their phones for making calls. Oh, my! I was noticing how mine is actually a complete little computer. Love all the high tech toys nowadays!


On another bright note look at what I have sitting in my shelves beside my bed that I can look at each time I get up in my chair. Ashton left it here the last time he was here. No, actually, it was the time before last, and when they stopped by here on their way to Blytheville the last time, and Ashley saw it, I asked her to not take it with her so that I could have it to see and think of that sweet little boy. That little boy who is going to bed by himself now. What a BIG boy he is getting to be. He is getting ready to be a big brother as it won't be long before Emma joins the family. Oh, boy, for Ashley! Two children, and one of them a two year old.

I'm off now to try for another day, night, whatever it is for me, for you.

My children, long ago - memories

Kay, Utah, October 31, 1972
We had just completed a tour of duty in Ankara, Turkey, and were awaiting base housing at Hill AFB. While there Bobby (later to be known as Robert) celebrated his 5th birthday. Nothing could deter us from having a birthday party for him, so after returning from school that day, we had a little surprise for him. Below are a few slides Jimbo scanned, and gave me for Mother's Day this year.

The birthday boy
Robert Sears "Bobby" Wages

Bobby and all of his presents.
Wonder what all they were?

The three:
Jimbo (7), Bobby (now 5), and Debbie (2)

The boys standing behind our new Volkswagen in front of the motel/apartment where we were staying, a really nice place.
We moved into our base housing in time for Jimbo's 8th birthday, and in time for the first snowfall on the day the mover's unloaded our household goods.
~Memories~

Frozen face is stealing my smile

No.............! But pictures do not lie! In these pictures I was smiling with all the strength I had, and I could feel the resistance beyond my mouth. My checks put up a stumbling block, like a concrete wall, like my cheek muscles were trying to be forced beyond their will, and were pushing back. They would not move. It's at the white shiny part where I could feel it, but no amount of trying on my part could break that barrier. I'm so glad Debbie thought it was good, and even bought a frame for this one. Makes a mama feel good.

(Click on the pictures for a larger view)







I was more tired whenever we took this picture, and had even less control of my facial muscles, though I was giving it all my might.








So, what's going on? Why the decline? Shall we say missed IVIGs? April, May, June, and now coming up July? I am digressing, losing so much ground I have made over the past two years. The sadder part is that it was helping other autoimmune diseases as well. Looking at the larger views, you might can see the ruddiness, the broken complexion of my face, and the heightening`1 of my *butterfly* appearance of my lupus which has been under such good control that I frequently forget I even have it. But not now.

Mestinon, 60 mg 3 x a day is what I started out on three years ago. At that time I was also on 60 mg Prednisone, and today I am on 40 mg. Today I am on 100 mg Imuran which I was not taking then. In my opinion, I am back to square one, before starting the IVIGs, and thus am no where near finding the drug combination that will put me on to the road to a drug induced remission, of at least **some** improvement.

So, where is this going to take me if I do not speak up now? The only thing I know to do is talk to Dr. Diamond and let him be my advocate. I do not feel like I have one at this point. It is harder to swallow, and I am choking more easily. I plan to have Christa, my nurse, call Dr. Diamond tomorrow, plus I am going to print out the facts of the medications and worsening symptons. Just a little bit more, and I'm not going to be able to see much at all. Well, it is about to that pont right now, actually. Jim had to help me drive my chair while we were out Friday because I could not open my eyes wide enough to see, and was outside, but even in the store I could not see byond a few feet surrounding me, and that was out of focus (I'd sure like to go back when I could go more slowly and take my time to be able to look..... Melissa, are you there....big grin ;). There is always shopping online.