Wednesday, April 30, 2008

Wednesday, The Day full of surprises

Then, the Beginning

Now Wednesday, April 30, 2008, brought more with it than was planned.

This is the day around which The Week revolves. It is a day no couple ever wants to have to face, that of cancer surgery for their partner. It is the first time since I have become bedridden that I guess you could say that I am glad of it because I can hide behind it, my nervousness, my want-to-do-something, and all my co-dependency traits, all those things that I've busied myself with all these years, today they just have to sit here, and do whatever can be done from here. Just this. Nothing except rattle my fingers on the keyboard. Nervous? I'm scared to death! Shaking so I'm surprised my fingers are finding the right keys. Well, actually, they aren't. The back space key is getting an unusual work out to make corrections. As good as Son Jim and Daughter Debbie have made me feel, I still feel the Dread of Dracula (ha, I have no idea what that means or where it comes from, it just sounds scary!). I would feel MUCH more comfortable if it were ME having the surgery, (well another organ of my body, though), than he going through this.

The Day begins! 5:30 a.m. For those who do not know, Jim sleeps on the couch in the living room where my bed is located because of my falling and coking during the night. Were I were to do either, he would not hear me upstairs. I was already awake when he got up from his lofty position, Callie snuggled in close to him the last I saw of them. I asked him if he was nervous. "Oh, yes," was his reply. Here you have a man nearing 69 years old, who spent 49 years in hospital administration, spent only two nights of his lifetime in a hospital, and those were for tests. He says it is this unknown (being put to sleep) that scares him more than the cancer within him. The fact of having the prostate contain the cancer completely
gives him more peace about that part of the whole picture, at least at this point in time. Guess you might say it gives him a little temporary *storage* room for it, releasing more time and space for these other worries.

With the danger of my being put to sleep associated with the myasthenia(anesthesia and myasthenia are not friends), I never got the chance, or maybe allowed myself to be too consciously afraid when the actual time for me to go to surgery came for me, however, I did not have the months and months prior to mine to add up like Jim has had. That first postponement was the worst for him in my opinion, in SO many ways. The first was the drop of his face that I saw on his face as he walked back to our morning spot, the change in his voice, the slump in his shoulders. I was not going to be given a general, and intubated, but with myasthenia, even locals are warriors with us. Spending the morning worrying about when I was scheduled to go was more on my mind than the risks I was about to undertake. hahaha It must not have been buried too deeply if that was the first thing I asked the nurses who came to get me. It was about did they know I had MG, and they told me the anesthesiologist would be asking me a lot of questions as soon as I got down there. And, that she was. Funny, it reminds me of a movie or TV show where they are rushing down the hall with the patient on the gurney (remember Dr. Hammond was looking for me), and a nurse or doctor is running alongside asking questions, writing, trying to keep up. Everyone was behind me; I couldn't tell who was talking to me. I asked who was talking, and she popped her head around so I could see. So, she had most of her questions by the time we got to the surgical suite, reassuring me she was aware of my anesthesia myasthenia unfriendliness, and that I would be okay. Only a matter of minutes elapsed before I was snoozing, and in her hands. That is the way, not the rushing, just the OR busy-ness hop-to-it-ness I was hoping it would be for him, too.

He and Mark were on their way, with Jim and Donnie leaving shorty afterward, all arriving at the hospital about the same time. It seems funny to me now to think of it being his name being called in the big waiting room instead of mine. Fiddle sticks, it all seems strange to me. It's not supposed to be him being sick, not supposed to be him being the one. It is, though. Here he is after they called him back to get him ready for his special day.

Now they have put his IV in, and he is ready to go back to Holding

Post-op, and the best way to give you the results, is in Jim's own words.

"Well, to begin with, I still have my prostate. The surgeon cut 3 holes in my tummy (one of them looks like a second belly button) and inserted the laparoscopic cameras. He saw something that he doesn't know what it is, i.e., a mass, an infected area, etc. The other doctors didn't know what it was either. He stopped the surgery at that point because he said that if he had gone any further, he could not have stopped. And, if it was some kind of infection, he could spread it and cause a lot of problems. They showed it to Pathology - they didn't know what it was, but didn't think it was anything cancerous - they are testing it. I will have a CT scan, and see the doctor in about a week. Hopefully, by then they will have figured out what it is and how to treat it. Then he will know about re-scheduling my prostate surgery."

Back from surgery, and the nurse is taking the IV out
Waiting to go home

Just about ready to go home, showing his wound
He, Jim, and Donnie go home to Mississippi, where he will be very well taken care of for several days, just however many he decides is best on his staying there.

All is over for the day, and things settle in for the night, as least to my knowledge.

So for, Wednesday, that has left things still unsettled, knowing even less than we knew at the beginning of the day . . .

for Granddaddy

Striving for a world without Myasthenia Gravis

Tuesday, April 29, 2008

A dash of fun for Tuesday

Then, the Beginning

Now, Tuesday, April 29, 2008 gives us time amid the hustle and bustle of The Week, for a moment of fun during the turning point for the rest of our lives.

Cameras. Do you have a camera? One camera? Two cameras? A silver camera? Pink Camera? Film camera? SLR? I could go on and on just naming the cameras in our household. Ummm, and whose cameras are these by the way? It could be embarrassing if I were to answer this question. Even more embarrassing is how many cameras does Jim own that are just his and his alone? I had plans to get him one for our anniversary, but I was down sick at that time, and we celebrated that around my bed with take home from Olympia Restaurant that replicated our First Anniversary, and we just had each other us and the babies for our anniversary.

Like computer mice, I have a thing for cameras, hobby I guess. However, this has spanned throughout the years beginning first at twelve, and migrating on up through the 35 mm to today's fine digitals that are now too heavy for my myasthenic neuropathy hands to easily control. The last camera I bought, I hang my head in shame, and admit it was a with-an-excuse-toy camera that I dearly love, and takes wonderful pictures. You would wonder at it, though, when you see how thin it is, maybe a stack of four quarters high thick (I'll have to measure it some day), and it is red! Well, come to think of it, not much thicker than an iPod.

It was bought *just in case* my pink Sony was broken, and I got home to Blytheville without a working camera (happened a few months back), and Wal-Mart did not have a suitable camera for a replacement. On the way home from the hospital, we stopped by Best Buy, and by the time Jim found out it was only could possibly be a dead battery, I had already fallen in love with this cute little, paper thin, red Casio Exilim. I tried. I really did try to roll away from it, but the farther I rolled, the tighter the tie tightened between that red display and me. Jim said, "Do you want it? If you want it, then get it." I'd just been tethered to the IV pole for five days, with an IV line open in my hand or elsewhere for seven days. Though feeling lifted, there still was an emotional drain pulling on me, and the moist edges to my eyes were surprising to me as I was just having fun, not seriously looking. So I thought. Jim came to where I was; he saw my eyes though I tried shielding them from him. It's all about me. It's all about me isn't it? Selfish? It had a "wrong feeling" even though it was money I had saved myself just for a reason such as one such as this. In the end, it was nothing he said or did. It was what I wanted. I wanted to buy the toy, the little red camera.

I got the little red Casio Exilim toy camera. I think I understand children. Maybe I am still a child.

Now, I have a pink Sony and a red Casio.

Jim asked if he could take my pink Sony to have at Jim's to use while he would be there. Is it selfishness, or a I wanting for him to have that camera now so that I cling to my security blankets? Or am I wanting to get his delayed anniversary present? Frankly, it all stinks. With nerves like mine are right now, I wouldn't trust any answer I give. But, I have made plans to get him one regardless.

I enlisted the aid of Debbie back over the weekend. Personal circumstances develop, and we keep the text messages hot over the weekend, and into Monday. Things work out, and she is able to do our Sherlock-ing today during her lunch time, then Santa delivery afterward. That was fun in itself because of her and me working together for something for Daddy whom we both love dearly. It had its own little mystery down to "I'm on my way in," text when she got here to the house. Poor Jim had to get up and unlock the front door to let her in to bring his own gift to him. Only, she brought the Wal-Mart Santa bag to me.

I took a peek inside, then called him, and said, "Jim, the girls and I have something for you." He was pleased. We got him a 2 g memory card so he ought to be able to shoot plenty of pictures of the babies now.

Debbie had to go on back to work, her Sherlock-ing and Santa-ing over. Jim brought his camera, plastic packages of more cords over to me (someone's making a killing off of cord manufacturing for cameras and cell phones, then ID tags to know them apart!). I tried really hard, but my vision was just too bad for me to be able to read the instructions or the camera markings sufficiently to set up the camera for him. I suggested he ask Debbie to come set it up for him after she got off work.

She and Mark came over later in the evening, and she got him all set up.

It is necessary for me to publish this right now. I will edit the ending later. Until then . . .

Striving for a world without Myasthenia Gravis

Monday, April 28, 2008

Decisions on Monday, the Second Day of the Week

Then, the Beginning

Now, Monday, April 28, 2008
turns out to be a significant day of The Week, the turning point for the rest of our lives.

Early in the day, Dixie Health Care calls to inform all concerned that the hospital bed will be delivered about 2:00 to 2:30 p.m. this afternoon. That makes a *happening now* sound to me, whereas before it has been a futuristic sound without clear boundaries of starting or stopping.

Now, this is the beginning for the bed; like everything else, the end is open. Well, we can draw it in a little bit because of the month's rental on it. Son-in-law Mark, with Debbie in the picture below, was there to accept delivery of the bed, so I guess that means he is also accepting his mother-in-law moving in with them beginning Wednesday, but with an open-ended stay. That sounds like a brave man to me! I text him and ask him to take a picture of the bed for me, and just look at the mess he made of that. Wonder if he was trying to send me a message? Awww. I cannot do that to Mark. He is too good a son-in-law. I have to take responsibility for messing with the picture.

I have my sister Brenda to thank for the bed. Nothing could be much more appreciated. She and I are many miles apart with so much going on in both of our lives. She is finished with her chemo and is doing radiation now for her Non-Hodgkin's lymphoma cancer.

Monday has also been a really bad day for me. The surgical area of the insertion of the port has been very painful. I talked to Donnie, nurse daughter-in-law to see what she thought; she wasn't sure. It has been one week today since the surgery, and I expected it to be a non-entity by now.

The IVIG side effect headaches have also shot out all of a sudden. Those ole scalawags! Cannons exploding, blowing my head into another world.

Never once, until today, did I ever think of the surgery affecting *My* Myasthenia Gravis. That, plus the pain, has caused me to sleep frequently most of today. Yeah. Just when I don't have the time for it the most! When there is much to be done. That's okay. I'm not going far - one block down the street, and there is no set time like going to doctor appointments. I can always come back later for anything that I miss.

But . . . what position will this put me in come Wednesday? Something that needs thinking about. Seriously.

I got word that son Jim got a call about 6:30 this morning on his house phone that came from my cell phone. I text him and asked him what kind of message it was that he got. He called me to explain it to me. In talking, he told me that if I decided not to try to go to the hospital Wednesday for Dad's surgery, that he would be there for me to text or call as much and as often as I needed. He told me he would repeat things for me as much as I needed him to do. Is that not a blessing to know!! He wanted me to be sure that I did not think he was saying anything about what he thought I ought to do, just that *if* I did decide to stay home, *he* would be there for me at the hospital. he reiterated it over and over, even saying he could not say it enough. I could really sense that he could understand where I would be coming from during the hospital and surgery time down there, and if I were here, and he was trying to put me at ease. It was just about all a son could do for a mother if not physically with her. If I did not express it clearly, that's okay because I understand it inside of me where it is important, really important.

The grammar books probably sprouted wings and flew out the window with that, but that is the way it came from within me, and that is more important than being grammatically correct.

We continued to talk, and as we did, he put me at such comfort, such ease, that it was easy for me to decide what I needed to do Wednesday, one of the days of This Week, this turning point week.

Thanks to my son, and to our conversation, I was able to know
while we were still talking, what was the best thing for me to do Wednesday.

I am staying here.

As much as I want to be there where Jim is - and this does keep slipping back up - I feel it is best for me all the way around to stay here with, as I put it to him, his sister Debbie hanging on to my coattail, taking care of me.

Like surround sound, there could be nothing better surrounding me now than where my children have placed me.

See you tomorrow!

Striving for a world without Myasthenia Gravis

Sunday, April 27, 2008

The first day of the rest of our lives

Then, the Beginning

Now, Sunday, April 27, 2008, is the first day of the rest of our lives. I know. It is such a simple statement, often repeated by many, many times over, but I make it here, full of more than I could ever comprehend.

That being the case, there is nothing more I can write about it other than just stating that fact. We will just have to wait and see what comes.

Wednesday, April 30, 2008, Jim will have his robotic prostate cancer surgery. That is the day of this week around which things will revolve. After this . . .

Please stay with us.

Keep coming back to check on us.

Keep us in your prayers.

We appreciate each of you.

I will keep you informed as the days progress.

Striving for a world without Myasthenia Gravis

Friday, April 25, 2008

A funny thing happened on the way . . .

. . . to surgery. I asked Sunday night what time I was scheduled for surgery Monday, the 21st. They had me down for NPO (meaning I couldn't eat nor drink after midnight) so I knew I was going *sometime* Monday, just not when. *They*(nursing staff) said patients who were already patients usually went before those who were just coming in for their surgery, so that meant I probably would go early. Wow! Wonderful vague answer! Sure to be number one on the charts. What charts, I do not know, but surely there is a chart somewhere it could land on. No need to worry about it, though, I already had my bed, and I was staying put until I saw those nurses from OR. They could watch me grip my myasthenic / diabetic neuropathy hands as I held on to the rails of my bed with sheer determination. I would not, never ever give up my bed. Breakfast trays come and go to other patients as I wait to go to my destination. Hmmm, do you know what time they serve breakfast in the hospital? Not early, that's for sure! In anticipation, I begin to prepare my *stuff* on my bed for removal. I keep my computer, and *tech toys* there with me during my stay, putting them away whenever I am away from my room. Well, wouldn't you know it!! Just as soon as I get started doing that, in walks nursey April, "Come on. They want you in surgery NOW! They want a stat blood and urine!" Okay by me, but hey, I'm only the patient here, I don't draw blood as I am not a phlebotomist, and I only give the urine in special containers of which I have not been given one. Then in walks sweet, always smiling Shirley from the lab with all of her little pokems and vials that will not affect me from this day forward, for when she asks if I have a port, I'll be able to say "Yes!", and will not need to have my veins stuck and abused again! I have another picture of Shirley while doing her job (professional and impressive), but I wanted you to see her sweet smile. For a year she has been coming to my bedside, and for a year she has worn that same sweet smile, and brought good blessings to my room. It makes me smile just thinking about her as I am typing this. She may frequently be the first person you see in a day at St. Francis-Bartlett because she often comes to your room about 4:00 a.m. Ouch! That's a bright light she turns on!

By the time Shirley is finished with her vampire work, nursey April is back with the special little cup, and we go to the bathroom to get that specimen. While we are in there, who in the world do you think shows up outside my door? My surgeon!! He is looking for me! Wants to know where I am. Yep, sir, Dr. Surgeon. I was wondering when I'd get to come visit you in your suite, since we last met in mine. Now I'm beginning to have some idea of when it might be. Ah, ha! And as I told you, I would remember your name easily, Dr. Hammond. I played on many Hammond organs in my lifetime, and in many different places. I'm ready, how about you? Ooops! (I didn't really say all of that; I didn't even see him ;) Before I can even waddle back to my bed, two OR nurses
(Donnie, I wish it had been you) are walking into my room. They help me into my bed, swish! everything's off of it quickly. Then we're out of my room, but . . . I am still in my bed! We go this way and that way until through double doors we go where bright lights blazon overhead. We turn left into a private little room, in which a bed resides in the center. Hmmm. . . now where is my bed going to fit? You don't think . . . Well, first the nurses take my ears from me, and puts them into a cup . . . my new ears into a paper cup! Can you imagine? The audacity! Another one of them is the anesthesiologist, and I told her I have Myasthenia Gravis, and *I* wanted to wake up when all was said and done!! She ASSURED me she was on the same page with me and *My* myasthenia gravis, meaning she knew the risks, and also understood my fears of the anesthesia, that anesthesia and myasthenia are not friends with one another. She was sweet. I remember her face very well; too bad I didn't have a pink or red camera left with me in my bed! Not that anyone would even think that something like that might, could, or whatever happen. Crazy!

Okay, now cames the time. They sweet talked me out of my bed! Yeppers! That's what they did. Since I had just had the IVIG treatment, my legs were able to cooperate more than exactly one week ago when I entered St. Francis-Bartlett, and I guess you might say I was a willing participant, too. Although nice and sweet, though tricky-talking to get me out of my one and only !wonderful bed!, on to this cold, stark, stretcher-looking bed with a HUGE light hovering --hopefully securely-- above it, they couldn't or wouldn't even give me a pillow for my head!

And look . . . that is the funniest, oh, my . . . oh my . . . my box of toothpicks from my room! My box of toothpicks had been beneath me all of that time from when I got back into my bed in my room from the bathroom, and my jaunty little trip down to the OR. Lying on toothpicks. *shaking my head unbelievingly and laughing* Luckily they were all in the box. We all got a tickle from that before they played their dirty little trick on me when they just had me breathe slowly. That's all there was to it. Simple. Remember, too, that one or more (I bet on the more ;) were out of sight, and without my ears, so out of hearing (set me up good, huh?), behind me.

All done. What? Done? What do you mean done? I never even got to see Dr. Hammond. At least I'm not sure I didn't. There was a fleeting moment before I remember nothing that I *think* may have been him. Guess I will never know, or at least until I go in to see him for my follow-up appointment in, uh, how many weeks? Where? Was Jim there to find out? What all went on? Good grief!! What had gone on without my knowing it?!?!

Those nurses. Does Donnie act like them? Does she sweet-talk people into giving up their wonderful beds to get over and lie on one of those cold, stark, stretcher-looking beds with a HUGE light hovering --hopefully securely-- above it, looking beds? Oh, I hope not. Not my daughter-in-law, the BEST daughter-in-law in the world, the ONLY daughter-in-law I have!! You would NEVER believe what they said about me. I am appalled. They said as soon as I awoke, I started talking!! Me? Surely not me? AND, surely they had not been put up to saying that by someone else in my room. Hmmm, I wonder; I think. Possibility?

Well, at least they knew I was alive and very, very well; my mouth muscles were in motion. But look at the mess they left me in! Painted me up ORANGE! Oh, yes . . . also when I woke, I was back in my own bed, coming into my own room. Did I know about moving back to it down in Dr. Hammond's suite? Part of me thinks I did, part of me thinks I didn't. Now how's that!?!? Nice. Score one for the hospital.

It was not long until all was perfect, and that was when I woke from a doze, and woke to see my sweety standing there in his blue shirt. I remember how nice he looked in it. Better than that, though, was the smile on his face. That said it all.

He left after a while to go to Betty's, his niece, in West Helena to have lunch with her, then he was coming back to the hospital to spend the night with me. I was probably going home the next day, and this would be the easiest on him (and definitely much happier on me). Yes, it would be easier on me, too, because no matter how much, or how hard they try there at the hospital, there just isn't anyone to measure up to him, and his care of me.

He helped me wash off the orange. Sweet.

So, this is my little excursion I took on Monday, the 21st, and from all I hear I will be very pleased with having the port. Looking at this, do you think I might? This is just one arm, plus this does not show the six sticks for just one successful one during the week before the surgery.

I just want to say "Thank you" to everyone at St. Francis-Bartlett, and especially Admin/Holding and the 3rd floor, both of whom have made a part of my life much easier just because of the way, and who you all are! Thanks especially to April on the day of surgery.

Striving for a world without Myasthenia Gravis

Thursday, April 24, 2008

"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?


Striving for a world without Myasthenia Gravis

Wednesday, April 23, 2008

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!

Striving for a world without Myasthenia Gravis

Monday, April 21, 2008

This is a day of celebration for the veins!

And all the veins said. . . .


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.

Striving for a world without Myasthenia Gravis

Sunday, April 20, 2008

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!
Striving for a world without Myasthenia Gravis

Thursday, April 17, 2008

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.

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.

Tuesday, April 15, 2008

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!

Striving for a world without Myasthenia Gravis

Saturday, April 12, 2008

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

Striving for a world without Myasthenia Gravis

Friday, April 11, 2008

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!

Striving for a world without Myasthenia Gravis

Thursday, April 10, 2008

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!

Striving for a world without Myanesthenia Gravis

Wednesday, April 9, 2008

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!

Striving for a world without Myasthenia Gravis

Antibiotic turnover

Bet you thought apple, cherry, or any other fruit! No, here we go playing antibiotic turnover. Like fruit basket turnover, replacing one with another. Jim called Dr. Franklin today (Tuesday), and gave him the lowdown about the Doxycycline. I am now taking Azithromycin 250mg pack for five days. Sounds powerful. First thing I did was to go look it up. It did not show on any contraindicated list, though there are some *.....cline* antibiotics listed; I did not check the drug manufacturer list. Hmmm... I just realized I haven't coughed any at all tonight. Could it be? I get this "it's too good to be true" feeling sometimes, especially when it comes to antibiotics working.

I treated myself to a special tonight. I upgraded my Paint Shop Pro X to Paint Shop Pro X2. My PSP X needed reinstalling on this computer, and since it was going to be more than a little bit difficult to find my cd, and I've been wanting to upgrade for some time now, well . . . I went ahead and did it tonight. I have been using PSP since it came out in the early 90s, upgrading all along the way, test driving it with version 8, which is the version I have running on here right now (oh how primitive now! LOL). Later on tonight or tomorrow (Wednesday) I might try to get my Photoshop installed. For some reason or other, I just cannot get myself wrapped around Photoshop. I like it. I have plug-ins for it alone (speaking of plug-ins, that also needs to be done for my PSP - I had soooo many once upon a time, and still do if I can get to my data, and I could if ....... on and on and on ....... it's just so hard whenever you cannot get around to get or find things ....... awk!). I'm not complaining. Just frustrated, which I tend to get whenever I am feeling better, to do things, but cannot do them because of the physical limitations. Hey! You just gotta find a workabout. Alan in Austrailia (check out his blog listed over there beside you - great diabetes information in addition to his travel logs (he has good pictures from everywhere!)) has his Walkabouts and Driveabouts, so why not a Workabout?

Jim is so patient with me and my splurges of inspiration. He accepted long before I did that I couldn't stay strong long enough to complete a project. When I started the IVIG treatments, it disappointed me because Ashley almost expressed complete disinterest, disbelief, dis-this, dis-that.... When I asked her about it, she said, "Well, nothing else has worked, so why should I get my hopes up for this, too?" That was when I began to see reality. It was the same that Jim had seen except that he didn't say so (that's changed more now). I had always thought it a weakness on my part that I was starting things and not finishing them. Not like me at all. Now we know. Yes, a weakness, but not a disinterest. Well, it actually does become a disinterest when I can no longer perform the necessary physical tasks required for the job. Amazing! Now I could quit beating myself up. The MG diagnosis gave the answer to so many questions. Dr. Franklin said he was sorry he did not catch it sooner; it was there all the time, but I had so many things going on, multiple autoimmune diseases, it was just hard to see. Validated. That is how I felt. I have heard the same thing from many other MGers.

Speaking of seeing. I have recently processed some photos that show my ptosis clearly. In all three pictures, my eyes are opened as much as is possible. It *feels* to me as if my eyes are completely opened. This is one thing that leads to my falling asleep so easily. Whenever I look downward, if I do not raise the lid immediately, it is too heavy, and I lose the momentum to lift it back up causing it to remain so nearly closed, and then in a second I am zonked! This is what happens here at my computer, having to look down. I type a little, pause to think, and the next thing I know I am waking to find my unfinished work published, or a hunk missing where it had become highlighted then deleted. Have you ever tried to recapture your thoughts you had hours before? Ha! It's hard for me to do that with only minutes passing. One thing for sure, it has made me become much more diligent and aware of what I am doing. So, from a *bad* thing comes a good thing - some discipline! You think the kids would believe *discipline* is still necessary when you are 65 years old? Let's hope I have used some discipline here because I just found a couple of stray, wandering words, and I have no earthly idea where they came from nor where they needed to go, so off they went! If you need a word here or there, just put it in to suit your fancy.

Looking through my lashes causes a blurred and distorted appearance to things. Sometimes I tape my lid up to remain open while I do something, but that tends to irritate the skin, and I rarely do this anymore. I am also hard of hearing, and the impairment of both has been an emotional battle, but since getting the hearing aids, I am doing better. As I told Jim, I feel a part of the world, a part of the *loop* now, no longer an outsider. My empathy for the sight and hearing impaired has grown beyond measure. There *is* 20/20 vision beneath the lids, the challenge lies in reaching it. Usually, just after an IVIG course of treatment, I will have about a week of *fair* lid muscle use. I get so excited whenever I can see clearly!

This was taken about a month ago as we were dining out.
My pupils were at least half covered by my lashes and lids.

This one was taken in February when I got my hearing aids.
I think it shows the droopiness really well.
Plus, you can see the *whatever* that collects in my lashes.
They require cleaning all throughout the day.

This was taken almost a year ago following my first course of IVIG.
It still amazes me at the change in the cosmetic appearance of my eyes.

Striving for a world without Myasthenia Gravis