"Oh, there's no place like home . . .

. . . for the holidays." Okay, so it may not be a holiday, but there sure is no place like home after ten days away off in the hospital. Granted, the rocking 3rd floor, St. Francis Hospital-Bartlett, is just about second home to me, it really has been good to get back to my home, to my bed, if only just to spend the night, then turn around, make the trip back to Memphis the next morning to see the endocrinologist for a diabetes appointment.

All the traveling was okay, though, because we got some good information on beginning to get my diabetes back under control - hopefully. We'll start today with Cream of Wheat for breakfast. Backtracking, though, after that appointment, I was so totally exhausted (so I thought), that I wanted absolutely nothing to do but to go straight home. That is until we started to talking about what, where, when to eat supper. Hmmm, it was right at 5:00 p.m., 7:00 by the time we'd get home; I'd not had lunch proper, so Jim thought we ought to go on and eat there, and I cannot believe he had the audacity to suggest Abuelo's. Me? Eat at Abuelo's? As tired as I was? I just cannot believe he'd suggest such a thing!! How fast could we get there??? Ugh.... oooh, what food! Guacamole on lettuce. Vegetable fajitas. Only one tortilla. . . just came from the diabetes clinic remember. New regimen. Iced tea. NO dessert. A nice new waiter, Andrew (No picture).


We missed Brett because I got his name wrong when we went in. *I* asked for Keith, or Kevin. Where in the world did I come up with those names. Could it be that Kevin was one of the last ones who moved an IV site was named Kevin and it lasted two whole days! Phenomenal! Evidently part of me had not completely left the hospital yet.

I brought most of my entree home with me; I really was too tired too eat, and that is one of my MG rules for choking, do not eat when tired, so a to-go box was in order. Nothing, however, has been said about having Starbucks and my square wave bolus was good enough to fit it, so just wind along the mall parking lot, confuse Billie when Jim starts to circle the building to place the order (for me, he doesn't drink them ;), YummmY, a venti mocha latte! This writing has been sitting, waiting on me to finish, so I think at this point, I will go ahead and send it. Whatever is left, I'll fit it in with today.

With coming home Wednesday, then going back Thursday, I've been falling, falling, falling, off to sleep, and not accomplishing anything at all. I *do* want to say that it appears that this treatment has yielded the best results of any so far MG-wise (think I have said that before, and if so, that is good), factoring in the headache side effects. They are just part and parcel of the deal that I might have to put up with either some or all the time. To feel this good, I'll gladly deal with the pain in the head!! My endocrinologist also gave me (that's Jim, also . . . let's don't leave him out; it sometimes takes both of us for one good memory!) good information yesterday about the portacath. I think I have so many doctors that maybe each one thought the other one was orchestrating the affair, when in reality no one was. I knew my good doctor, Dr. Latif, would bring it altogether for me.

We spent so much time with my PCP last month about the previous month's hospital fiasco, we did not go into detail about the portacath, just that he expressed the same opinion that it was time to go for it now. For me, that was all I needed from him, the hospital team would be handling the surgery (though I wasn't aware of it being a surgical procedure at the time (duh - but too much on my mind)).

Then, I'm not sure how it got ordered once in the hospital, what with my MG and admitting neurologist Dr. Saeed, his nurse practitioner Debbie, the internist Dr. Ali, his nurse practitioner Liesl - whew! I think that is all, except for the weekend covering doctors Dr. Asaaf, and Dr. Henry (a really special doctor - "Hello, Dr. Henry!" ;). Did that confuse you? Just think how *I* feel!!

I found out while having a long visit with one doctor, Dr. Ali, that he and Saeed had spent a long time discussing my case, and plans for the future treatment. Anyway, I think each one thought I knew more than I actually did, when in reality I knew virtually nothing. I had started studying up on it, got distracted, and never got back to it. Plus, I've heard it referred to so casually so much that, well, I guess I just thought casually of it. It was not until it was all said and done that I realized the "depth" of things, literally, and figuratively. Dr. Ali explained much to us Monday night when he talked so long with us, but I still did not get a clear picture (the headache could have been preventing everything from sinking in).

We've got a clearer understanding of it now, along with an inch and a half incision on each shoulder because the left vein was inaccessible, and Dr. Hammond had to use the right one then. Guess you could say I got two incisions (photo) for the price of one, but only one port. Ha! Ha! Laugh, that was supposed to be funny, but I know it wasn't. Enough on that now. I'm driving all over the road, and if I'm not careful, they are going to take my license here away.

I've had another nice little nap. A nice little MG recuperative nap.

This was begun Thursday night, and finished Friday, so Friday is yet to come. Think I'll make it?

Toodles
Striving for a world without Myasthenia Gravis

Good Morning! Maybe home today??

After the toradol (spelling, have to check that out for my education ;) shot, and then a dilaudid I went to sleep without doing my thing here. Sniff. Sniff. So, so sorry, you were all on my mind. Really, I was . . . Anyway, I fell asleep, woke once about midnight, and Tonya set me up with Shasta Diet Lime-Lemon Soda and ice, so I knew I was covered for the rest of the night. Yeah. Was I ever. Right back to sleep! The clock on the wall showed 6:00 when I looked at it next! All night without waking, and without a severe headache! A managed headache, yes, but not a screaming, explosive one. YaY, YaY, and YaY again. Yes, a headache that needed taking care of,, but feeling so much better. Just so much better! Maybe that will count big on my going home.

That's it for now. Just wanted to tell you about my good night's sleep after the change in our pain control attempt, and that I am really hoping, and thinking I will be going home today. Say a prayer for me that that will be true! I'm so ready to go! Still got a bit of post-operative pain in my surgical area, but nothing to complain about; it will just wear itself out.

I'm just ready to go home to the best caregiver in all the world! He helped me while he was up here. He knew our little *ways of doing things* and was such a big help. Maybe it counts that I love him so much, too.

It is time for breakfast; they should be here just any minute now with the trays.

Here is breakfast now!

Toodles
Striving for a world without Myasthenia Gravis

This is a day of celebration for the veins!

And all the veins said. . . .

"HIP! HIP! HOORAY!" "HIP! HIP! HOORAY!"

No more abuse of the veins!

As of this morning, morning being April 21, 2008, my veins will be able to escape the horrors of being stuck innumerable times whenever blood for any reason is needed from me, most namely being for the IVIG treatments every four weeks.

During this course of Myasthenia and IVIG treatment alone, I have lost count of the number of times my veins have been stuck (minimum required once).

One time six sticks were needed for successful entry before a vein would hold. That means being stuck six (6) times before finding a vein that would accept and hold the needle, not blowing . . . huff 'n' puff, all the normal things a vein goes through . . . you know what I mean. It's awesome what our poor little veins go through just for us.

Well, no more of that for my little darlings. No, siree! *I* got me a portacath! Yes, siree! You better believe it! No more black and blue arms!

Some pain is setting in now, so I must go, though I really would like to stay and chat a while.

Now, it is just to get out of the hospital and home to my babies.

Toodles
Striving for a world without Myasthenia Gravis

A good night!

What a wonderful night. The last bag finished! No headache! Woke only once, but went right back to sleep. Did not wake then until Dana came in this morning at 6:00 a.m. to check my blood sugar (a happy 128 - higher than my optimum, but good nonetheless for here). Had a slight headache, and we decided a dilaudid was in order to stave off an up and coming headache according to their record (she could see, and I could feel the pressure building). Now the day is before me. Oh, how I am hoping for a really good one.

Dana and I noticed that once the IVIG was completed the *bad stuff* stopped, or at least lessened in severity, showing for sure it is all caused by the IVIG. Still lingering headache, but seems to be manageable. That helps us know how to plan for the future treatments. Aaaaah less than four weeks away now before the next one. Sure comes around quickly doesn't it!

I'm off to a questionable start this morning . . . I just lost a whole paragraph, and it was a mixture of everything, so it is hard to go back and recapture. Guess we'll just toss that one. Good-bye :(

It is time for meds, and after that I am going to get all spiffied up, even put make-up on, perfume, the whole bit! Now, what does that tell you? And thanks to Jim's superb ironing, today I'll wear the one with ruffles that he goes to such pains to iron. One month I told him I didn't wear it so as to cut down on his ironing, and he said, "You mean after I ironed it, you didn't wear it? That's why I ironed it!" Since then, I make sure that if it is possible, I wear it. So, my darling Jim, today, I dress just for you. Tomorrow, when you will be here, I'll have to be wearing the yucky ole hospital gown for surgery, but today is just for you! I'll even try to get a picture made and sent to you. Love you, and miss you!

Here it comes, that darn ole scalawag. And big and bad. Phooey! Not surprising. Lovely Tonya is bringing relief when she brings the meds.

So, this all for now, but I leave you with this (be sure to click on the small ones to get the regular size ones.) . . . they're great!

Granddaddy getting Ashton's sugar while Ashton, 6 mos old,
sits in a big boy's high chair at Ruby Tuesday's in Jonesboro.

Ashton checking out all around him.
There is something interesting over there.
Nothing like a finger and big blue eyes to check it out. ;)
This eating out is really lots of fun!

Toodles
Striving for a world without Myasthenia Gravis

Blowing veins, one at a time!

Here a vein, there a vein, off a vein they go. Whooooo! There goes one, catch it before it gets away... awwww, missed it, it's a goner now. :( How many veins are left to scatter from the needles now, and this is only the third bag, uh, the beginning of the third bag. Once this course of treatment is over, though, I will be getting a porta cath inserted Monday morning. I resisted it until this last time, and talking with my PCP decided it was time to cross the line to risk it (I've remembered what you said Eddie; they're blowing and/or there's not a drop of blood showing upon needle withdrawal), I have a good antibiotic he had to use last month for a respiratory infection, but it is in one the earlier blog entries. Anyway, it was time to compromise and risk it. I mean, look how many get and have them every day. I've even talked to the surgeon about my MG anesthesia risk, though they will not be giving me a general, it is my understanding that what they will be giving me can still be risky. I have to reread my sites on this, and check with those who know way more than I do.

So, this is my last treatment of abusing my veins, rather I'll just take a chance with my body! This is because I will be doing this so often - every four weeks. Like having parties with my veins every four weeks!! Hip hip hooray! Yeah, for whomever likes parties like this. Not to complain, though. I *do* have to look at the good they bring me, though, and I *do* love seeing my second family up here on 3rd floor. No complaints there for sure! H E L L O 3rd floor!

NTERUPTIONS! They're okay though, when the nurses come by, when Liesl comes in with her pretty new hair cut (she was just copying me, ha ha), and of course when any ot the doctors come to see me. Liesl is Dr. Ali's nurse practitioner. She probably knows more about what is going on with me than anyone else.

Well, I tell you what. I just wanted to get on here and let you know I am still around and have been trying my hardest to bring you somewhat up to date, but the scalawags (headaches) have been B.A.D. this time from the git-go. Bad enough for us to start with the dilaudid, trying to bring them under control if we can, not just treating them, and the med keeps putting me to sleep. I shall go, and get myself settled in for a better, better prepared post for tonight. It may literally tonight depending on how much the nurses are in, and what all they have to do. *Hopefully* we will not have to change veins again today. I don't know, my IV pump is going off. Bummers! Wish me luck! Look for me on here tomorrow morning. I'll do my best to get caught up tonight!!

Till later, and hoping the blood still flows freely through the veins.

Toodles
Striving for a world without Myasthenia Gravis

p.s. Sorry, but I had a major interruption with a doctor, then fell asleep for the rest of the night. Here I go, starting all over again.

It's turned into a bad trip

To give me more time to get my thoughts in order, I am going to post a quick note to let you know I have not forgotten you, my friends are here.

I would have my laptop all in place, and then something would go dwrong, and it would have to moved, or a procedure done. It has been wild!! I'll tell you all! Just as soon as I send this into outer space!

Please keep the thoughts and prayers coming. My surgeon has been called in once, and I *think* all is well with my port, but I wonder if they nurses can apply as much pressure as he did. Away go go to try!

Toodles
Striving for a world without Myasthenia Gravis

JOB: Cats needed for packing carpetbag

We are just about down to counting the hours. Aarggh. Before that, though, we are going to Cave City to get Ashley and Ashton, then going to Jonesboro to hang out at Turtlecreek Mall. After the bright, sunny skies of the perfect day yesterday, sunglasses are first on the agenda for me! I'm not sure I can make it all the way into the mall without stopping in Francesca's. Since we will be gone tomorrow, and we want to leave fairly early Monday morning, that means getting almost everything ready to go before leaving for Cave City tomorrow. Red carpetbag is packed, brown one is here waiting. Problem is, I really do need some help. This is the condition of my usual helpers.

Here is Callie and Anna Kay of Siam at the foot of my bed.

Anna Kay of Siam is bathing Callie.
This often results in sleep.

Oh, Anna Kay of Siam is momentarily startled.
She has the pretties of blue eyes.


Determining food, water, or loving was not in the offing,
Anna Kay of Siam goes back to bathing Callie once more.


OUT! No good for all practical purposes.
They'll not wake until morning.


This leaves a job opening for help in packing the brown carpetbag in preparation for going to St. Francis Hospital-Bartlett Monday morning. The job may require some Sunday work, either while I am gone, or late into the evening hours after I return from my excursion to Jonesboro tomorrow.
*shakes her head, shrugs shoulders*
It is getting harder and harder to find dedicated cat help any more.

I am receiving word that there is a contender for the job opening.
This is what I know.

She overheard about the job on the computer where she lives.

She checked out all the details on the web. YEESSS!!
Oh. Not lady-like. Calm down.

Feeling this was just the job for her.
she began to wash and ready herself for the interview.





Ready at last.
Nervous, but she has a good feeling about gaining the position.
Helper extraodanaire
Missie Nicole Wages


Toodles
Striving for a world without Myasthenia Gravis

Spring sprung a perfect day!

How often can you say you have had a perfect day? This has been one of those days for me.

A cheerful Jim had my breakfast just about ready when I woke, and the day continued on like that, all the way to the beauty shop where I got my hair washed and cut late in the afternoon.

The skies were beautiful. The temperature just right. Aaah. All was perfect today!






Toodles
Striving for a world without Myasthenia Gravis

How's the antibiotic turnover?

Well, I've gone and done it again. I have this thing about not knowing how bad I feel until I start feeling better.

Hooray for the new antibiotic Azithromycin!

Day three. It is truly working its magic. First was the disappearance of the cough. Left and has not come back. Since then I've just been gradually feeling better and better until today I am realizing I really did feel bad but just didn't know it.

That ole inner zip is returning. Whoosh. Thank goodness!

Toodles
Striving for a world without Myanesthenia Gravis

It's time to get out the red carpetbag

Signs of Spring were brilliant with the pear trees in bloom when we were in Memphis last week. One white tree after another looked as if there were new fallen snow blanketing it. So it is here when the red carpetbag makes its way front and center,
it is a sign that it is time for the next trip to St. Francis - Bartlett Hospital for my course of IVIG therapy. While Jim gets the clothing ready to go into the red bag, of which there is not the usual amount due to last month's fiasco when I didn't even have to wear but a couple pair of jammies. I will be redoing the medication sheet, and hopefully setting up a medical history sheet to help facilitate the in-processing time with the nurse - just a blah thing to do having to try to remember all of that each time. I will also start gathering the things together that go into the brown carpetbag. Now what we need is for the body to cooperate, and stay awake, alert, and fiddle. Today was a steady rise, and I am awake now following about a two hour nap, par for most nights.

There is some tension floating around. I'm sure that once I am back into the hospital, and all is running along normally I'll feel better, but I do dread the initial "breaking-in time." I think it is best not to even think on it at this time. My thoughts are going from one thing to another. I either need to process them, or try to forget them. Hmmm, I doubt they will be easy to forget since this is like a huge tsunami bearing down upon me with giant crushing waves. So quickly and easily do pictures of one come to my mind, and I can feel myself just disappearing. I remember writing in my journal last month that at one point there - before I had totally lost my chance of going to my room - that I felt abandoned. I guess it is this *lost* feeling that is permeating me now, trying to set up a base from which to work its nasty little business of messing up my days between now and Monday. Can't let that happen.

Ashley wants us to try to hang out Sunday at Jonesboro at Turtlecreek Mall. I had told her we needed to try to get together before I go in because after I get out, Grandaddy will be going in for his surgery, and then there just will not be an opportunity for a good while before we can do it. She has this Sunday off so we are going to see what we can work out for that day. That ought to be a good *send off* for the week. I mean, who could resist wanting to spend the day with the likes of this . . .

I leave you with Ashton. Stay and play a while if you'd like. Just do not get all of his sugar because I am going to want to get all I can get before off to the hospital I go!

Toodles
Striving for a world without Myasthenia Gravis