Thursday, May 29, 2008

I feel *_*

Who would hang out at Turtlecreek Mall today?

That looks a bit like a smiley face in my title line where I have typed an asterisk and an underlined space between each one resulting in *_*. Maybe it is a message. Maybe I need one. I was going to say *overwhelmed*. Initially, the sun was not up, and the pre-dawn darkness felt my mood completely contending with a headache; find me a descriptive word. There are my scalawags, these post IVIG headaches. Yesterday I was sure they were going to blow out my head. I tried to manipulate the lolly to make *one*last for 24 hours. Did it, too! At Schnapp's, the pain specialist, I quizzed him in every kind of way I could take them, and each time I asked, he nodded his head with a "sure," until he said to take them in any way I wanted to take them, just to take them. The point was that you cannot set a headache at a certain time, day or night, for a certain amount of time. Getting rid of the headache was the goal. "Billie, just do what you've got to do to get rid of the headache!" Yesterday was one of those days. This morning I woke to the appearance of that same kind of day. I hope not. It is the kind of day in which I want to just lie here, do nothing, sleep, and be okay about it.

I must be really tired. I just got a glimpse of life (from my bed), and felt extremely tired at the thought of it . . . and *that* wafting is over the smell of the Fancy Feast special cat food for the babies today. Why can't their special food smell as good as ours does? I seem to get the down-hill draft.

Oh, my gosh! This is definitely a negative morning, Friday morning!

Why, no, this Saturday now is definitely a much better day! What happened to Friday? I rested and slept it away. Whatever it needed it got. I even stayed in a more reclined position with my computer raised, bed lowered. Quite unusual for me. To view, I put my pillow under my head. So THAT is why we use pillows! Our beds do not raise. We cannot see our computers if our beds lay flat. But they feel so good to lay flat until -- how do you write the sound for a big coking cough? This is why I lie sleeping sitting up, never lying down. Well, one of the reasons. Two or three more, but if you could have heard me whatever the name of the night the other night, you'd think it was for coughing until coking!

Now, *this* is a very special Saturday. I'm living it the second time around. I do not explain it. I can't. Somehow yesterday, I thought yesterday was Saturday. Guess that is what the headaches can do to you. At least that is what the headaches can do to you. Therefore, I'm going to let all this go all scrambled. Who cares how Friday got to be Saturday. All I know is Jim came and staightened me out, telling me, and showing me on my computer, and all is very well! Happy Saturday morning to you all!

Enough for now. How 'bout a nice new day that really is Saturday, May 31, 2008? Me! Temperature on my computer says 83 at 11:00 a.m. in the morning, and I'm feeling a bit better. Might add a picture or two then go off to graphic building and some fun! Who cares what the name is of the day? Could we rename Friday again for another day or two? Make up a poem, a song or two. Oooooo, Jim is tired of my la,la, las, making up this, making up that, hehehe, and I have so much fun. I'll see if I can appease both of us. Aaaah, maybe satisfy....++<<++**BOTH**++>>++.... of us?? Not sure how, but I have an idea or two; sometimes they run like kudzu vines!

Striving for a world without Myasthenia Gravis

Thursday, May 22, 2008

Did you miss me?

Dedicated to ALL those who work on the Third Floor
St. Francis Hospital - Bartlett
Memphis, Tennessee


I have tried and tried, typed, and typed, but just . . .
What a trip!!

I missed you, but would not have wished this trip on you! Not at all.

Admissions was quick and easy, right on to my bed into holding . . . my nurse was surprised when she asked if I wanted to change into my gown before going into my room; no one had been able to tell that I had been wearing my pijammies that morning. On the other admissions I had had a heavy sweater or coat over everything. Umm... that is going to be hard to pull off in the future as it begins to warm up. Special nurse.

While I settled in, Jim did his usual thing (I know, he is getting tired of this. I am too!) of bringing things in from the car, then off to home! First thing we did was to set up my laptop. No interconnect of course down here, but I could at least type, and have some to draft. I settled in, and got comfortable, for as late in the evening it was, I knew it I was there for the evening, maybe even getting my IVIG start

The nurses there decided in the Emergency Department all decided that that was I "more than a difficult stick" and called for Dr. Hammond to come over to look at it, thinking it might have turned over or something.

Forget it, forget. Lay down the cameras. Put down the whatever it is you need. Come round and join me. I've got a story to tell. It's one of not intention, nor one of schedule. Helterskelter is more like it! Messin' more with my mind.

I have tried and tried, typed, and typed, but just can't this ole mind and myasthenic fingers working for the life of me so instead I will introduce my 4th great-grandchild of mine. And now I add most probably at least one TIA, and could I be flirting with another? In the mean..... Here's Alexander while I try to figure out what I have done!

Alexander Taylor Gilliam
8 lbs 3 oz
Dayton, Ohio
son of Jennifer Anne Wages Gilliam of Dayton, Ohio, and
daughter of Ryan Gilliam of Dayton, Ohio

Brother Matthew and Sister Kaitlyn

Striving for a world without myasthenia gravis
(June 27, 2008, with repairs coming round the ben)

Wednesday, May 21, 2008

"Once in my room, I will be back online, and . . .

"Once in my room, I will be back online, and able to publish once again. If not, then in the meantime, hopefully I can write. It just depends on how a lot of things play out after we get there."
Does that quote sound familiar? It should. It is from the last few lines of my last blog entry "It's time to pack the carpetbags again." I typed that on Sunday, May 11, 2008, and I know you keep up with each and every one of my post ::: cough ::: cough and well, . . . um . . . here it is many days later and still nothing to show from me. Hey! What gives?


Striving for a world without Myasthenia Gravis

Sunday, May 11, 2008

It's time to pack the carpetbags again

Now is the time. We have been so busy moving back home the latter part of the week, that I have done nothing toward getting ready to leave other than think, talk, or write about it. I know why, too. I do not want to go. Pulling down my monitor to peer over it is the sweetest sight. Missie Nicole is curled into a tight ball, sleeping softly. I find that I have followed her leading as I am waking, now a few hours later.

Well, Missie looked sweet and all, but she is not the reason for my not wanting to leave. And, I *do* want to get to that blood product dripping into my vein, for sure, because I am really in need of it. It is what I am having to give up that makes me plumb sad. Yep, that's what I said. Plumb sad. That is a colloquialism not of my normal use; well, could we say I never use it, but it does seem to fit right now! Sounds like something someone who giggles at the bald (slightly :-), gray haired man riding my power chair down the middle of the street might say, though. Oh, how much I am going to miss him.

I hate to break our little family of Jim, me, and our four furry babies apart once again, but what has to be, has to be. Sleepiness seems to be overwhelming right now, also, and we have to get on with packing those carpetbags you see above, so that means cutting this short. Once in my room, I will be back online, and able to publish once again. In the meantime, hopefully I can write. It just depends on how a lot of things play out after we get there. I *will* have my camera with me, though. Wonder about our budding photographer? :-)

Until then . . .

Driving into St. Francis - Bartlett Hospital
Emergency Entrance

Emergency Room Entrance

Admissions ClerkToodles
Striving for a world without Myasthenia Gravis

Saturday, May 10, 2008

The old folks' home

Oops! That should be, "The old folks are home!" Oh, and loving every minute of it.

I got an 8:00 a.m. text from son wanting to know if we enjoyed waking up together. At that moment I was the only one awake, but it was not long before I heard, "Good morning, Mama." Turning my head it was indeed a *most* enjoyable moment to see the gray, bald headed man to whom I first turned my head 47 years ago for a date. He was looking and sounding quite chipper this Saturday morning. No less for me. There was even more strength to my legs.

Yes, son, we surely did enjoy waking together. Not only a smile, but the memory later now, brings a few tears. You should have seen him riding my chair down the middle of Hearn yesterday to get it to the rear of the Expedition. I giggled as a school girl at the sight of this elderly man coming towards me as I sat and waited for him. There is a difference in laughter and giggling you know, don't you? You and your sister should have seen your mom and dad. Well, on second thought, maybe you shouldn't. *giggle*

The babies gathered round us after filling their bellies with treat food from Papa, and taking an extra long bath. He sat in my chair as we talked about first one thing, and then a, "Oh, and you should have seen .....," followed by a little descriptive story, *always* with a smile on each of our faces.

The rest of the day continued to be just this pleasant, moving along as the Mississippi's meandering pace. Even the sky slowly went from cloudlessly-bright to stormy-night, as tornadoes ripped and zipped from place to place across Arkansas space. The young girls, Debbie, with daughters Ashley, and Christen, accompanied by Ashton Sears, went to Jonesboro today to Turtlecreek Mall; the old folks stayed here and watched Channel 8 weather almost the whole time after things picked up until the words came, "They're safely Home." I added a few Bookmarks today. Weather ones, watching TV weather from my laptop. From day one, you never cease being that parent. Just yesterday Debbie was looking after us here; today, it was *us* being concerned about her, and her girls as the storms roiled over their heads while they had a fun afternoon at Turtelcreek mall. I think I heard there was a call from Senatobia, Mississipppi with storm warnings, too. We were all on watch as one. One as in family taking care of family. Nice. *smile* Nice sitting back and watching it all on TV and our laptops, contacting by cell phone. Stress-free. Watching the young ones in charge, responsible, from 18 to 43. These days are as watching the Changing of the Guard in slow motion.

One important thing we had to check out the very first thing this morning. Did we get the cold shoulder from the babies, or were we welcomed home, as in being a bed partner? I was able to record mine. She snuggled in as close as she could get as I lay here and read most of the night. Across the room, Callie did her due by stretching out alongside Papa, though Papa sleeps all night, and does not have his (his very own!) camera close-by. *hehe, give him time, he's warming to the photo spirit* Whenever I would stop and stroke Missie's forehead, she would open her eyes just a bit, and give me a loving look, saying, "I'm glad you are home." Me, too, Missie.

Judge for yourself if you think Missie was glad to be aside Mama once again. *sigh* It is short-lived, though, as I return to the hospital Monday morning. Good night, Missie Nicole.

Striving for a world without Myasthenia Gravis

Friday, May 9, 2008

Mestinon and Myasthenia Gravis

I got started back on the Mestinon 60 mg last night, and *did* have some favorable results with the ptosis. It did not relieve it, but it improved my laptop readability.

Nothing was clear and sharp (I never have clear vision unless I tape my eyelids open), but I managed to read a CarePage story I found out about by Peggy Larson who I read as she posts about her son Coleman. I admit I *did* skip about, not reading each entry, nor have I fully read Bob's quest for signatures yet.

It is amazing how one learns to cope when faced with limitations. Just *some* improvement in my eyesight *felt* like perfect to me. Of course, after I had read for a while, the lids tired, and dropped some, but the 180 mg timespan were now backed by the 60 mg, and they did not go back to the extent that they had been.

I also waited to see if the 60 mg would help me make the trek from my chair to the bathroom after a while, and it did somewhat. This afternoon, after getting home, it was still as laborious here, and we placed a chair along the way for me to rest, and rebuild the legs. If the coming IVIG does not do its job well, then we've got to make some kind of changes around here.

All in all, the combo of the two Mestinons, the 60 mg, and the 180 mg timespan do help. It is just finding the right times to take them, and I think this new way is doing better for round the clock work.

I talked to them last month while at the hospital a little bit about my legs, and I intend on talking further next week because my legs act like they are out of the picture entirely. They aren't. However, I'm wondering how much is the MG, and how much is the diabetic neuropathy, which would not be touched by these treatments at all. *What* exactly would help that other than treating the pain? Dr. Saeed had said once before, that once we got this other stuff taken care of (MG is all I can think of, not knowing if lupus and rheumatoid arthritis are in the picture, too), we would take care of the legs, which meant to me that they are a separate entity, requiring a different treatment. The logic in me says we could not know the extent of treatment needed until that is the only problem left requiring treatment. Just getting to the point of walking in the house again would make me very happy!

Why hold your bottle when you have a handy, dandy table to do it for you?

Striving for a world without Myesthenia Gravis

Mama's home!

Mama is home and been checked over and welcomed by all four babies.

The twin torties and the Siamese rushed to love me, and to get loving, but the elder black and white one went about re-staking her claim on me and on my chair. She didn't like it having been around a dog.

I have just realized we are going to have to have a family picture made. How do you gather four cats together for a photo shoot? I'm open for ideas! Putting one together with PSP or PS might be the only answer.

Missie Nicole playing with my balloons Bankie gave to me when in the hospital one time. She is balanced on the headrest to my chair, grabbing and biting the ribbons to the balloons. Sometimes, she would even jump out for them. None of the others ever tried doing this. Um, does Missie need some more, Papa?

Striving for a world without Myasthenia Gravis

An ill wind

My sister Brenda reminded me tonight, "As our Mama used to say all the time, 'it's an ill wind that blows no good'."

What we were discussing was "something very good coming from something very bad."

Brenda beat breast cancer last year. She is now battling Non-Hodgkin's Lymphoma, having completed her chemo, she is now preparing for radiation.

Click the Give™ FREE Mammograms button at the right to help fund a free mammogram.

Thursday, May 8, 2008

Now the day is over . . .

. . . and how is everything? Changing.

The day has been too full for us to move me back home this evening, so I am still at Debbie and Mark's. Jim is at the house, and will sleep to his heart's content in the morning, then come down to take me home. He stayed down here until close to 9:00 tonight, after beginning his day with an 8:45 doctor's appointment. That is a long day with three road trips, the excitement of the news, packing up and going home, having the babies glad to see him - they were, they really were! My turn comes tomorrow. :-) We talked and talked. I loved listening to him tell of his surgery experience, of the jokes he told. He is a mess!

It would be surprising to me if much about my MG is changed significantly before we left on Monday morning for the hospital. The ptosis is in full glory with poor visibility. I accomplish most by memorization, both here and in my graphic's program. My facial muscles are very weak, making it hard to talk, eat, or drink. Not severely so, just really, really fatigued, like when I *have* to lay my head back against the bed.

I've just taken 180 mg Mestinon Timespan, and hope that will help the vision somewhat. It is a waiting game. If no results in a couple of hours, 30 mg of plain pyridostigmine might be helpful. It is a "wait and see." I'll also see if it affects the legs any, making the miserable trek any easier with stronger legs. While I wait, going blog visiting sounds like a nice thing to do while the babies sleep.

Striving for a world without Myasthenia Gravis

The doctor's report

Whether this will be the first of two, or the only post for today will be seen later tonight after we have settled down - at HOME!

Frist, news from the return to the doctor. The tissue was, in the words Jim gave to me, "twisted fatty tissue." Now, if I need to change that later, I will, but the best of it is that it was nothing serious. We have been away from the house all week, and all of this time the doctor has been trying to call him to give him the report, and to tell him he didn't even need to come in today! Oh, well. I'll bet he made sure they have his cell phone number now, or at least instructions to call it if they already did have it! No, "Everything works together for those who love the Lord..." and a lot was learned throughout this week that we did not know before.

Jim just sent out an email to family and friends, and I am copying it here:

"Just got back to Jim and Donnie's from my appointment with my urologist. He said that everything is fine! The mass he found was a piece of fat that had twisted and had eventually broken off. So Pathology report was negative for anything cancerous. The CT scan of my abdomen and pelvic area that I had Tuesday did not show anything! Except for the prostate cancer he said that I am fine. He will give me a little more time for getting my strength back from the anesthesia - then schedule the prostatectomy in about 2 weeks.

He apologized for me having to through everything again, but he felt what he did was the safest and best for me. I told him that my family and I completely agreed."

Yesterday, Jim sent me pictures of his staff. Now, I am not sure which rates how. I know all the attributes of this one on the sofa, Donnie, our daughter-in-law. I was there when she graduated from nurses' training. As far as the cooking Jim raved about, I know about that, too. It is one thing she loves to do. I'm positive that she did not allow him to want for a single thing. She would be hard to beat. We're glad for St. Francis for rearranging her schedule as an OR nurse to allow her to be able to be home to take care of Jim after his procedure.

Now, this gray, silky beauty. What do you think? I need to consider if our babies might be reading this. You think? Nah. Felix is a really swell guy, and I'm glad he took up with Jim as he did, though, because Jim really likes to have one of them to sleep with him at night. Um Felix would be close to Callie as a bed partner. I bet he gets sniffed a plenty when he gets home. Those girls are going to wonder. He *might* have some explaining to do, so I hope he has his story good and straight!

This has to be it for now so that I can get it posted, and get a few things done.

Striving for a world without Myasthenia Gravis

Wednesday, May 7, 2008

So, how are things going?

Okay, common font, how about a different color. Maybe thinking of green for growing, growing in so many different ways. Over the last ten years or more I've definitely done some growing introspectively. Shed a bunch of tears over the way I was to the way I wished to be, and worked on that way. Whatever. I'm happier with the *me* of today, than the *me* of some years ago. If I could just get upstairs to my books, there are a few worth reading again.

It has been a week now that we broke things apart. I spoke of *normalcy* a couple or more days ago. Today, I wrote to Brenda that Debbie, Mark, and I seem to have slipped into a semblance of normalcy here. We've had to live it for a while to find it, but we have stumbled into a comfortable groove. They live much like Jim and I do, with a few exceptions here and there.

My doctor told me about eight years ago when I was under a great deal of pressure and activity, that if I were to stand still or go backward, I would soon die, that it is going forward that is necessary for life, for living. That has been true since I have been abed with the diabetic neuropathy, and myasthenia gravis. I have used my laptop to keep me busy. It keeps me in touch with the outside world, and keeps my mind alert and busy with my creativity.

I digress. How unusual for me to do that. Just moments ago Debbie and I were talking about how we have slipped into our sense of normalcy at the moment for what is needed now. The first few days were needed to *feel things out* and get used to one another. I had worried about being a bother to them. It feels strange to ask for some of the things, lying in bed in anyone else's home, even your daughter's. They better be careful, I may renew my rental on the bed here!

George, their dachshund, has some *knots* on his spine, and had to go to the doctor for steroid shots. He must be kept quiet and immobile, and the vet gave him sme drugs to keep him sedated if need be. Debbie was holding him, trying to keep from giving him any, but he was excited, and wanted out of her lap, so our conversation was interrupted as she had to take him upstairs to his bed, and I'd guess for his durgs. Pooooor George.

When she left we were talking about getting me ready to go to the hospital next Monday. Jim and I have it down to a science, and can zip through it all because he knows what all goes, and what goes in which carpetbag. Debbie was saying that she could get my things washed, and whatever needed ironing, ironed. We were on to more discussion about preparing when she had to take George upstairs.

Jim, along with me, can guide her easily. His part is telling her where things are, and even he might not be able to do that since things got messed up in getting him readied for leaving. You are probably asking why that would mess things up to that extent, and I am not going to tell you, nor show you.

Guess this would be a good time to go back ask the question about "How are things going?" Debbie was back down here, and we were talking some more, and we feel things are going very well. Now, this is for us, for now. It helps me that she even figured out on her own why I had the crisis yesterday. Dad and I have talked that only he understood the crisis, and that has scared me.We have talked of sending the web pages to the kids, but have never done it for various reasons. Debbie has made me more comfortable by putting 2 + 2 together correctly. All that has to be done is take me to the hospital or call 911 to have me transported because this time I was the closest to losing all bodily function, speech, extremity, swallowing, breathing, than ever - it is making the right timing . . . the crisis is now better since she picked me up some pyridostigmine 60 mg from the drug store on her way home from work. I've messed around with it, and have things better now. She and Mark handled the situation superbly, and we will all continue to do so as I hope the crisis wanes on tomorrow until it is time to go to Memphis on Monday.

All in all a good day. Sure it could have been better from a physical standpoint, but from a coping standpoint, I just don't see how we could have handled it much better.

Hurray for us!! And Hurray for George for not crying when he got his shot today!!

Striving for a world without Myasthenia Gravis

Monday, May 5, 2008

The value of son-in-laws

Remember back to Monday, May 28th, when my son-in-law had to be here to accept the delivery of the hospital bed being rented for me to use while I am staying with him and daughter Debbie? Remember how I said what a brave thing for a guy to do, for it had a definite beginning date with an open-end to it, not knowing how long I might be here?

My son-in-law has a name, I don't go around calling him son-in-law. His name is Mark Simmons. He HAS to be the best son-in-law ever. Now, he doesn't live half way round the world, away up in Alaska, over in Africa, no far away place like that where I hardly ever get to see him. Mark and Debbie live one block down the street. Here's a recent picture of Mark made at this fantastic restaurant here in Blytheville one weekend when Ashley and Ashton were here visiting for the weekend.

Other than being nice and respectful, I guess one of the first things I remember Mark doing for me was getting good sturdy metal ramps ramps made for our front door after I got my power chair, releiving Jim of an extra duty loading and unloading the chair, and making for a MUCH smoother ride in and out of the house for me.

Then during the middle of one night, I got stuck in my bathroom because my right leg would not function, and I could not rise from the potty. Jim and I had tried everything we knew possible, and I just could not get pull up to the standing position. The only thing left to do was to call Mark, and down the street he came - literally the middle of the night about 2:00 a.m. - and he helped Jim posistion things for me to be closer to my chair once I was up, and then comes Mark to the rescue. Now, you may laugh, for it does sound funny, but son-in-law comes into the bathroom, grasps his mother-in-law beneath both arms and lifts her up and over to her chair! Hooray! Now, she can back the chair out of the confines of the space he and Jim have created. Jim felt badly for me having my son-in-law see me in such a situation of being in the bathroom, still on the potty, but *I* was just glad to have a son-in-law who was willing to see and help his mother-in-law such as she was. I think it says a lot for both of us! There are times when perspective must be put into place, and to me, this was one was at the top of the list.

There was another late-nighter, though not quite like the 2:00 a.m.-er. It was February of last year, Jim and I had been there in the living room, he was comfy in his chair, feet propped up, doing what he does on his computer (don't ask), and watching TV, too (remote nearby or sports network going), while I was over on the couch - this was pre-hospital bed time - reading one of my books quiet as a mouse until I made a strange gurgling sound he had never heard from me before. He called my name. No answer. Called again. This time louder. No answer. Then he came over, and by his reports, he says he did several things to waken me, even slapping me (lightly I am sure;). He realized I was unconscious so he quickly called 911. Immediatelly afterward he called Mark and Debbie. They both came down, and were there when the paramedics arrived, finding me barely still alive. Once in the ambulance, they tested me and found my blood sugar a whopping 16! When I eventually came to in the emergency room, Jim was near to me, Debbie just behind him, but there at the end of my bed whose face do you think it was that I saw? Yep! None other than Mark's! Ole smilin' Mark's!

I've told him how good it was to see his face that night. He could have been other places waiting for Debbie to be finished with her mother, but, no, he was right there all along until I was conscious once more, asking the questions just like they do on TV and in movies "How did I get here?" "Why am I here?" I really did that for the last thing had remembered was lying on the couch earlier in the evening reading my book, and now I was waking to bright lights overhead.

Today I am residing in Mark's home (Mark shown at right), indefinitely. First of all, he keeps his cell phone on and with him at all times, and for me he tells me to text him anytime 24 hours of the day he will be available. That makes it nice since they live in a large two story house, and sometimems Debbie does not hear her phone.

Debbie has had to go back to work, and Mark has been ever the vigilant nurse. He comes to check on me periodically to see if I need anything, and if everything is going okay. I had some worsening myasthenia symptoms this morning, leading to a mild crisis (MG), which (MG crisis) he had never heard of, and he handled it all very well, like a champ!

That was the fastest I can recall it all coming on like that, and reaching the vocal (I call it my stupid talk), and nearly reaching the incapacitating stage, needing help for more than usual movements. Mark was a fast and willing learner.

It really convinces me I need to get on the ball, and get my emergency kit compiled. It certainly seems paramount now that the only one who knows what to do is not with me. Complacency. Shame.

This is just a glimpse of Mark Simmons. I hope I have given you a fair share of the man he is.
Missie Nicole Wages
One of our babies
Striving for a world without Myasthenia Gravis

Sunday, May 4, 2008

Finding normalcy within chaos

Last week was to be so simple, so cut and dry. It was The Week, I have been following, it was to be the turning point for Jim and me. It still may turn out to be just that, only not in the way we had expected. We should know better because our life's experiences of 46 years have taught us to never have our plans cast in stone, and to not be surprised at changes along the way.

A summary
  • Wednesday was The Day, the day to kiss the cancer good-bye in alll likelihood.
  • During the surgery an unexpected, unspecified mass about the size of a nickel was found, and further examination was needed before safely proceeding; surgery was halted at that point.
  • We know nothing of the mass. It is being studied.
  • All that we do know now is a CT scan of Jim's pelvic and abdomen on Tuesday.
  • An appointment with his doctor on Thursday morning, but . . . how stable is this appointment? This is the doctor who had to change his first surgery date because he had kidney stones! Please do not mistaken me, I am not bashing him. He is my doctor too.Finding normalcy within chaos
  • Beyond that it is all blowing in the wind, tumbling, chaotic. The prostate cancer is the slow growing kind, but what about our nerves . . . our anxieties . . . are they the slow growing types?
Normalcy. Within all of this, where do Jim and I find some normalcy? In the midst of all of this, next Monday, April 12th, is the time for me to hop, skip, and jump to St. Francis - Barlett to try out my new port for my five day course of IVIG treatment. This is a supposedly normalcy in our lives; we can plan on this every four weeks. Is this all?

Actually, there is nothing we can look towards, plan on, until after out appointment with Gubin on Thursday. I guess I just don't like hanging in the air. So, we do that appointment, and get that news, then I go to the hospital the next Monday. As for today, that is our normalcy in this land of chaos.

I sure wish Jim and I were not apart right now. Missing our morning talks makes it all just that much harder, more unsettled. Neither of us knows what the other is thinking, and moreso, how the other FEELS about all of this. I know a little from a question I asked of him, but do not feel it should be mentioned here, especially without our discussing it. Golly, I miss him so. Just to think of lying in my hospital bed, my lined-up stuff along the wall, a baby or two lying on top of me, one on the floor, Precious on his computer, him in my rocker . . . it gives me flutters, and a feeling - twinkling? - in my tummy. To me, this is love of the older generation. I sure don't know anyone else who makes me feel this way, that's for sure!!!!! I love you, Jim. i'm so sorry you're having to go through all of this, It's just not fair, and yes, I know, nobody ever said life is fair, but you don't deserve this, especially this with this new finding. I'm glad you had the extra TLC from Donnie since I couldn't give it to you. The Kingly feast of soup, crackers, and juice that helped you get past your nausea.

I wish the lounge chair at the hospital was more comfortable because I'd surely love it if you could be able to stay at the hospital a night or two since you're not able to do much. Talk. Just talk. hahaha We could have fun taking pictures. Laughing with the staff whenever they come into the room. **smile on my face** Oh, aren't we going to have fun whenever we are back together once more, and both of us are healthy . . . well, to the best we can be.

For now, see if The Princess can bring a smile to your face. Can't you just see her getting all involved with the beauty products, getting nail polish and lipstick all over everything, and poor Jen having to come along behind her and clean up the mess, new baby Alexander in one arm!!! It's for the young, isn't it? And Ashley "is full of hands" with Ashton crawling now. but today, here is The Princess! Don't forget to click on this small picture so you can see it better in the big one. You just cannot see that cutie pie smile in this little one!

Striving for a world wihtout Myasthenia Gravis

Saturday, May 3, 2008

Saturday claims the end of The Week

Then, the Beginning

Now, Saturday, May 3, 2008, finds us at the end of The Week in a totally different situation than we ever thought we would be.

Jim was having robotic prostate cancer surgery on Wednesday, spending one night in the hospital, going home with our son Jim, and staying with him as long as would be necessary until he was capable of coming home to be able to care for the two of us. The reports of The Week give the experiences he encountered, instead. Hopefully, this time next week we will know more after the pathology report, CT scan, and his appointment with his surgeon later in the week.

The time will be full of anxiety as he and I wait on the unknown. This is the time that I really miss our morning time together. We talk about so many personal things, especially our feelings. To me, it is a time of trust, throwing at least parts of ourselves out there to the other to be accepted or trampled upon, though the latter has yet to happen. Debbie is taking good care of me physically, especially whenever she brings in the Starbucks!, but there is the emotional that neither she nor Donnie can do to fill the emotional voids, not that they would even want to do. It's funny that something we came by so recently could mean so much to me. Even the babies join us in our morning talk-time. Why, you'd be amazed at all they have to say. Just joking, but they really do sit around us, each one almost always in her own place. Such love and entertainment they give to us.

Here is a baby, though, that we call "The Princess." Among all the boys, she is the only girl of the great-grandchildren. The worst thing of all is our not being able to get to Dayton to see her and Matthew. Soon, Alexander will be joining them. Jennifer will have her hands full. I remember those days after Debbie came. Is it remembering with rose colored glasses to say I remember it as being days filled with fun? Not every day, but most days?

From reports from Jennifer, I think Kaitlyn is a fun-loving two year old, and one who loves the camera! Just my kind of girl!

Striving for a world without Myasthenia Gravis

Friday is a little perkier

Then, the Beginning

Now, Friday, May 2, 2008, finds Jim feeling perkier, though tiring quickly. Each day is probably going to progress this way.

Jim will be staying at Jim and Donnie's until he feels up to caring for both of us.

Is it my body that is feeling tired or my brain that is keeping me from thinking. Ooooo, maybe that is not such a good question to ask some people. They might jump on the brain thing all too quickly. It is probably best to run, run as fast as I can from that!

Each day I have been trying to include one of the great-grandchildren; ahhhh, they're just babies. I think one of Ashton would do for today. He is already seven months old now.

Striving for a world without Myasthenia Gravis

Friday, May 2, 2008

Thursday is a day of rest

Then, the Beginning

Now Thursday, May 1, 2008,

After the busy day of yesterday, surely everyone could use a day of rest. I slept off and on all day.

Jim started the morning out nauseated, but after slowly eating some beef broth Donnie made him, with a side order of some dry wheat toast and apple juice to drink, his nausea actually began to subside.

He just mainly laid around the rest of the day, even going outside late in the afternoon while Jim was mowing the grass. That brings back memories of the lazy, hazy days of summer when he would be the one mowing the grass while teenage boys enjoyed themselves.

His nifty nurse made him some chicken noodle soup and applesause for lunch, and the report coming back was, "It was sooooo good." Sounds like to me she won a gold star from those noodles. However, "Delicious" is the word of appraisal coming forth from the of chicken roast with onions, carrots, and potatoes.

There are some people who might be surprised to find that he watched the Western Channel some during the day. Me? I'm totally shocked? But, the picture below shows him lazing in the bed, TV on the other end? Aha! Jimbo fixed him up with TV that has most anything at all he wants to watch right there in his bedroom. Now THAT is a son that can't be beat. Whenever he found out about it, the first thing he said was, "That means I can watch the Western Channel!"

He spends his time split among watching the Western Channel, working crossword puzzles, and resting. With this, the nursing, and watch-care of his son, I imagine he is going to be coming right along rather nicely. I sure do hope so. It's no fun being apart, but whatever is necessary is necessary. That we have learned throughtout the years. And, ya, know, I think I've rather "grown accustomed to his face" and maybe even his humor as well. Don't tell him I said that!

Here is his buddy Felix - he has not left him since he arrived at Jim and Donnie's, even sleeping with him. If he is not in bed with him, he is laying in the doorway. Wherever Jim goes, he goes. It is like he knows something is wrong. Cats are intuitive. There was no warm up time, he just stuck with him from the beginning "I am really appreciating him,"

Felix sticking with Jim as he relaxes in the living room.

Striving for a world without Myasthenia Gravis