Now the day is over

WOW! What a day! Guess you could call it a day of transitions. The scalawags were lingering, threatening. Dana and I talked about them, and how we thought best to handle them. I slept. At 4 am we treated one, then I went back to sleep soon, only waking as necessary until breakfast. When I left in early afternoon, I had not encountered another scalawag. The difference in me was as in night and day, from when Liesl was here yesterday, and I was telling her I needed one more day/night to try to get the scalawags under control, and when she was there today to discharge me. It was easy to see I was in no distress whatsoever . . . just dressed and ready to leave the hospital, and go home (but by Best Buy first, after eating at Abuelo's ;)

I was so glad to see Jim when he walked in and woke me from a cat-nap. I had told him to come mid morning since Liesl had come early before when she knew I was going to be leaving in the morning. She did not *say* she would be by early, I just thought . . . there I go again with that thinking bit. ;)

Well, we did go to Abuelo's, and it was every bit as good as I anticipated. Love it there!!

Then on to what I had been hoping to do all week if I was able to do it . . . you see, I have this weakness . . . computer mice! There was a Kensington that I wanted really bad. Need it? Absolutely not! A few weeks ago . . . no make that probably more like a few months ago when we were at Turtlecreek Mall, I bought a maroon Kensington that I absolutely fell in love with it. There was also a red one almost like it. Well, it was except for the design. But this red one was so very cool, and like I say, not needed, just like a toy to a child, and well, maybe, after a week tethered to the pole, maybe I could convince myself I deserved a toy. Humprh! Sometimes I felt like I deserved a lot more than that, but that's neither here nor there. :- /

Maybe that is why I broke down and did it. Bought something waaaaaaaay totally into the nerdish, toyish realm. Another camera. Well, you see, it was like this. Remember all those pictures on the blood drive entry? I did not get to complete my picture taking because my camera played out on me. I was right in the middle of taking Dana's picture, and kablam! the camera just quit in clean air! Literally. In my bed, I had to hold my camera way up to take the pictures - my long arms stretched as far as t hey'd go, and I couldn't see the camera screen - and while I was taking Dana's picture the camera stopped in mid-action, with the lens left extended, and me unable to get them to close or anything. Nothing. Zilch. I've only had the camera a few months. It was fully charged before we left. So what gives?

Therefore, I did go to Best Buy ready to buy another camera, for what blogger can do without a camera? Well, at least the ones *I* know. hehe Jim and I take a camera with us everywhere we go, and he's very adept with the camera, and is very willing to use it - even in the dentist office, and as I get a biopsy on Wednesday if Dr. Naidu doesn't mind, we'll see. So, now, here's my logic (Jim is already chuckling to himself I know ;). Wish I could record him if I knew when he was reading this. Anyway. I had the *broken* camera with me. Clear. Didn't know what was wrong with it. Clear. I need a camera at all times. Clear. What if it is not the battery, I get home, it will not charge, then I am without a camera (Wal-Mart doesn't have that big a selection). Clear. There was absolutely no idea what was going on with my nearly brand new camera, and it was making me nervous, waspish, jittery, ninnyhammer, spastic, a basket case, bundle of nerves, timorous, antsy, unmanly - oh, my . . . . . now I know this has me in really in bad shape . . . unmanly? ? ? What in the world am I thinking? My nerves must be totally shattered to be reliving this situation, and coming up with those feelings to the point of, oh, my! Well, now, where was I? Let's get back to reality. Why I really needed to buy me a camera at Best Buy this afternoon after being released from the hospital where I was tethered to an IV pole for seven days, by a huge needle stuck in the thin, delicate skin of my left hand. Ouch!

I have heard some people diss Best Buy, but let me tell you, if you have a camera problem (you don't want fixed) they are just the place you don't want to go. In short order they determined it was nothing more than a dead battery. Wonderful. (Nooooooo) All we have to do is take it home and recharge the battery. (But I found the neatest little red, very thin, cutie Casio camera that just matches me in every way, awwww I really, really need it......... naw, I really, really want it) I showed it to Jim, whose helpful words were, "Your money, do what you want to do." Aaargh! Jim, that is no help whatsoever in helping me to decide. I had shown him a cute little $99 one that I had originally thought about (when did I EVER decide on the cheapest of anything), and while we were looking at it, he said what about this for Christen. She was trying to bum me out of a broken (probably broken, this is yet another camera that had been used by legion).

Poor darling thirteen year old granddaughter. She deserves the best, but things seem to have a way of skedaddling, vamoosing, absconding her proprietorship. It's not her fault, poor baby. Some boy stole her camera. Came up to her and said he had a green camera but no charger for it. She said,"That's funny. I have a charger for a green camera, but no camera." Then there is the iPod, and th..... no, we'll stop there of the things that have a hard time staying in her possession, but you see, don't you that she is such a busy, busy girl with so many things happening at once. Even now, her glasses are broken. I kept her mother and uncle in glasses, and I'm sure glad I do not have her, too, now. Someone should design some better glasses for children! There HAS to be something out there somewhere, somehow. The next generation maybe?

So, we buy Christen the daily special (with lettuce, pickle, and mustard?), and I am left with what?

Squandering my money? Okay. I am weak. I break. I get that little red beauty. I remind myself of my boys, when they were little, collecting Matchbox cars, the first one bought in 1965. No way was one car ever enough, no matter how much they cost later on when they and the cars got bigger, and then we added Hot Wheels to the collections. You just cannot help yourself (especially when you are the child, and mom and dad are doing the buying. *s*

So, now I've got the little red camera to take shots for my blog. Jim wanted to know if I'd let him use my pretty pink camera once we got home and got the battery recharged. I even bought an extra battery to have on hand from now on; this has never happened to me in my however many years of using cameras with batteries, my first 35mm being a Zeiss Icon purchased in 1964. Boy, that is a long time ago. That camera disappeared during a move. Sad. :(

Debbie and Christen met us here at home upon our arrival back in town. When Jim came in, he told Christen he was sorry we could not get back into town in time to take her out to eat, but that we had brought her a hamburger. ;) Then he handed her the Best Buy bag (they have new clear ones). Expecting a hamburger, she exclaimed, "It's a camera!" We had one happy little girl on our hands here. On the way over here, she had made the comment to Debbie - again - that she wanted a camera. Well, Christen, now you've got it. Don't let it do all those things I said above, especially skedaddle, and get out of your possession. I know how much fun you have, and good you are with a camera, so best of luck with this one. No, we won't scratch your name on the lens as someone suggested - I cannot imagine who would do that - but maybe we can do something. I guess getting older means having to use getting older ways of keeping things from vamoosing from us! *big smile*

All in all, it has been a really nice day, and I've managed to keep the scalawags at bay. This is looking promising, but . . . . . this is a one day at a time, one step at a time life I live, and we'll just have to wait and see what tomorrow brings with it. I'm excited about it, and if you are someone following this journey, I hope you are, too. Maybe it will mean I'll be able to tend to more personal mail finally. I certainly do hope so.

Today, Wednesday, I go back to Dr. Naidu for the biopsy of my mouth. It would be nice to have the results by Friday, but, that is only two days away. I will pull up *P* for patience, and put it into practice. What we are looking for is a very benign reason for the blisters and sores in my mouth for the past few years.

Until then,

Toodles
Striving for a world without Myasthenia Gravis

Seven days to freedom!

Seven days of drip, drip, drip, and on, and on . . . . but 'tis no more. No longer tethered to the pole by the tubing. Freedom to move about as I please. Nice.

The scalawags will go their way now, thank goodness, within a few days. Maybe they are on their way out the door as we speak. Not really very likely, though. They hang around for as long as a week. Of course, I am not going to complain if they want to start their journey earlier.

I have to say it. I just have to get it out. Today I had the one nurse up here that makes me feel so tense and upset. She acts like *she* is my doctor, making judgments about everything concerning me, so critical. She stands in my doorway counting out my pills, all the while making comments about how many I take, and that it's not good to take so many, shaking her head. Do you not think my doctors don't know what they are doing? I do, and I trust them, but she just puts me on the defensive. I've even wondered if she is the reason I've not been able to resolve my scalawag today. She came around my bed area, and started throwing things in the trash, not even asking if something was in fact trash or not. She eyed and talked about my stand and table as if it were hers, and was complaining about this and that being there on it. Sometimes she will just stand there doing nothing. I hope she is not my nurse tomorrow when it is time for my discharge.

Dana! I'm so glad to see you! My twelve hours are over!! I feel like I can call it my twelve hours of hell since you got off this morning. We can work together tonight to try to get the scalawags under control. You didn't get your picture in here because the camera was broken, but I want everyone to know just how much I do appreciate you. Always a smile, and you never give the impression that it's too much to ask of you to do something. When I say "always" I truly mean "always." We'll get that picture yet! *s*

Think it's time to get away from here for this day. Dana has sent me that Diet Shasta Cola down, and I want to go and read some blogs while I have my coke, and unwind from such a stressful day. One . . . I bet I could have gone home if . . . well, that is just speculation isn't it.

Well, double treat! Joie brought me the Diet Shasta, and now Dana has brought me two of them, along with two pakages of graham crackers. Nice.

Let's just say g'night on a sweeter note . . . Oh, there went Olayinka! See, the night just keeps getting better and better. And there is Patricia! I'll just put my new iPod on, find some the scalawags do not like, find some blogs to read, and . . .

Toodles
Striving for a world without Myasthenia Gravis

One end result for a blood donation - an IVIG

Back when Manic Mom began her Blood Donor Contest, it struck me that *I* am a recipient of more than 1000 blood donors. The IVIg is a pooled blood product of all of those donors. This really excited me, and I began to tell people about her blood drive, especially since I am in the hospital at this precise time receiving donated blood which is sending immunoglobulin running around through my veins beefing up my antibodies to boost my immune system.

This post is the recipient's side, and I do hope you will accept my deepest appreciation for all who donate blood, or wish they could but are unable to do so for various reasons. Due to interferences, I have not been able to totally complete all that I want here, so will be doing some editing later. Please do come back. I'll tell the nurses to not to anything, nor give me anything that will make me sleepy until I am 100% finished with my work here.

I appreciate all of these people in my post below. They are my second home and family. Their part in administering the IVIG is not a small thing. Each one, working together, is . . . well, golly, let's just say I love them all!

Receiving my IVIG

The scalawag is here. (a headache is a scalawag;) It is becoming as strong as ever (but not the worst), and It is best to get this done - hopefully - while I am getting a little relief from a dilaudid . Dr. Ali said last night, the scalawag just comes with the package for me. ::::sigh:::: I'm so blessed. ;) Sleep *might* overtake me soon, so I'm going to work hard to get this completed before the eyelids get too heavy, and shut tightly. He said sleep is what is good for me. I have a few more pictures I would like to get today if possible. It depends on whether they are on duty or not. I see one or two going up and down the hallway; I'm not their patient today, so it just depends on whether I can get their attention or not. I'm a bit shy about asking people for their picture. I know. ME? SHY? It really does take a bit for me to work up to asking someone if I can take their picture. Only one has turned me down, and with the weekend crew coming up, I think I can get a few more.

{Breakfast break. I guess Jim and the babies had to have our morning coffee time without me. Did you guys miss me? Did you all know that I am out of graham crackers? I bet Missie would go get me some if she were here}

Monday night after I came up to the third floor mansion, and Ernest so graciously welcomed me, it was not long until those 1000+ souls with their immunoglobulin were coursing through my veins.

Taping the tubing to my arm

Here Ernest has hooked the tubing from the IV to my arm. He is wrapping it with tape to make it good and secure so that I do not pull it out when I am moving about. *ME* moving about? You're joking, right?


Putting on the splint
Then he puts a splint around it all to help keep it in place, preventing it from getting pulled out, and my having to be stuck again. Last month required six sticks; this month, so far so good, only two!
Update: Location needed changing, so make that an additional three sticks, making a total of five now. *That* surely will be it, since we're getting ready to add the fifth bag now. Hope.



These are just pictures of my IV meter, and the bag holding the immunoglobulin of all those many, many people, a minimum of 1000, and upward to 10,000. Oh! That just blows my mind! The cost is astounding, and I'm sure you can see why. It has been stated that there is a shortage of IVIG. On the MGA UK Forum, a gentleman writes that he has been denied treatment due to a *world-wide* shortage. This is in only in one part of the UK, as others reported they were able to get the treatment. Regardless, blood is needed to keep this treatment going, and to somehow bring the cost down. The IVIG is working for me, a treatment of five days every four weeks, though we have cut it from 2 grams to 1 gram per body kg weight. This is to fight against the scalawags that insist on coming along . . . part of the whole package, the side effects that I have been so blessed with having.

IV Pump


Bag of IVIG product












Now, none of this is possible without the people in my life behind it all. There are many, and I have gotten as many as possible, not slighting anyone purposely. Those whom I can recall just by name but haven't seen this admission, I will be sure and add their names, because every single person has given me excellent care. Any time we have run into any problems, they have been resolved quickly, and efficiently.

Patricia
Patricia checks out my IV pump. She's a good listener. That's not
saying enough for the times she became involved more than
necessary with my two little boys, one with autism, the other who had been air lifted to University of Little Rock Medical Center Hospital.. Thanks Patricia for the help, and support, but even more so, for the standard of nursing that emanates from you.



Tanya
Here is Tanya, a nurse who makes sure everything you need is taken care of.
Uh, can you say Keebler Cinnamon Graham Crackers? Can you say how many more bags of IVIG are needed? Ask the pharmacist if there is *any* doubt whatsoever.
A daughter, sister, or dear friend. That smile is contagious! Can't do without her. Love it when I see her come on duty!





Olayinka
Olayinka, or as she told me, Yinka.Do you think may she sensed I might have trouble with the whole thing? She is from Nairobi, and is she ever light hearted, but a serious, good nurse when the time comes. I love it when I see her come on duty.





Adrienne
Now,what can be said about a red headed nurse? Can we say bold? She puts everything she has into doing her job well, and for her patient's well-being. She does not hold back on what she believes to be right or wrong. She is definitely a red head, and uses it well!





Pam
Pam is a very hard working CNA, who often works both ends of the 3rd floor midnight till seven. Amazing how she can make a *wash-up* leave you feeling like you've had a real bath. I think Pam and I were born of the same *sisterhood* - whatever that means. LOL For one thing, war on all autoimmune diseases!!






Al
Alhaji Marah from Sierra Leone, West Africa, is a most friendly sort
of guy, and very, very funny! He does a great job of taking care of his patients, though, as he is very dependable.





Carmen & Mae
Carmen and Mae. Oh, my goodness!! What can I say? A couple of CNAs who get the job done. I cannot get by without my hugs from Mae, and Carmen and I have to have our joking, in addition to her help





Pat with Joie
Patricia is here with Joie, a unit secretary. Throughout all the months I have been coming here, Joie always has a smile, and Hello for me, not at the desk, but down in my room. She says she has just come to say "Hello."





Sandra
Sandra cleans my room most days, and has the sweetest personality. Today she cleaned my bedside table from where different ones had left things laying there. I sure appreciated it. She is just like that. She never says much, but goes about her job very diligently, and thoroughly.





Calvin
Goodness, not enough can be said about Calvin, one of the two transporters with a smile for absolutely everyone! He will go out of his way to lend you a hand. Taking me to x-ray once, he had the forethought to put my laptop in a drawer, out of while I was out of the room. Once back, he set my room back up for me. Not in his list of duties. Thanks heaps, Calvin!



Ana
Ana is a delight as she brings your meals from dietary. A new face for me, but Ana has such a sweet, happy face, with a bright sunshine smile. After finding out to pronounce her name with a short A sound, I asked her where she was from. She said she and her sister, Sandra (above) are from El Salvador.






TYSHEENA
Now wouldn't you like to have your dinner tray brought to you with a smile like that? Tysheena has been really sweet about remembering some of my diabetes no-nos, and rearranging my food choices to help me be compliant. Not an easy thing to do.





Pat
Pat works at the desk, and I do not get to see her very often but when I do, she has the loveliest smile, and is so helpful with whatever is needed. That is a busy place where she is.






My home away from home
St. Francis Hospital - Bartlett, Memphis, TN. I have been coming here since May 2007, for IVIG treatments, which are one end product of a blood donor's gift. It is from the pooled blood of more than 1000 blood donors.





Me working on my laptop
On this post, actually.

Pizza, the sure fire way to cure the scalawags

Here I lie. NO! Not telling falsehoods, but lying in this hospital bed with this fluid going drip, drip, drip, drip.... 16ml every hour into my veins. What do you think this purple represents? The red and blue of my veins and arteries mixed together making purple? I couldn't do this in blue, I couldn't do this in black, nor green, nor red, and oh, never, never orange!!! Can I just say purple is one of my favorite colors? To me, that is reason enough, but it is not such a sophisticated a color. Blah!! Who says? What do they know? At my age, everything is beautiful, and yes, I do like orange, even have an orange picture of me. . . no I mean a picture of me wearing orange. Just cannot do a blog post in orange, that's all.

I'm writing because I am hungry. The scalawag crossed the line today, and I had to get a dilaudin. I woke up starving, and I had run out of Keeblers Cinnamon Graham Crackers earlier. I think I am having withdrawal *in addition to* being absolutely hungry. But, you gotta see it my way. Portion size. They do not feed me like my chef feeds me. He has measured out a half cup, and it is much more than they serve here, and THAT is my allowable diabetic diet. And especially if is broccoli, green beans, cauliflower, and really a lot of other things, too. Oh, my, this is making me even hungrier!

He cooks the best vegetables for us. We have a delicious recipe for squash that we made up ourselves. Since he is cooking to lower his cholesterol, we really eat most healthily. Except for my soft, near liquid foods for my mouth, and that is my, let the trumpet sound: Cream of Wheat!! Yeah, that's right. I could do a commercial on it; better yet, I could eat a whopping bowl of it exactly right now.

I just ask my CNA who is on tonight, Kim (Hi, Kim. . . it's so good to see you again), "When do we send for pizza?" No pizza, but she just came back into my room with a Shasta Diet Lemon/Lime, and Shasta Cola, plenty of ice. . . all to go with my steak dinner cooking in the microwave now at the nurses' station! Now. How is *that* for service. And it has green beans in it. LOL Thinking about it, better test and bolus. Good girl Billie - you know, like Good Dog, Carl. ;)

So, Pizza Hut it was not, but appreciated it was. Thank you, Kim. It hit a really, really empty spot! I know to be more careful in the future and bring more food as I usually do, like Lindt chocolate bars. They can't be beat, and are *supposed* to be good for you. That's what they say, and why should I not believe them.

Found: The perfect snacker. They have these little things of peanut butter. Perfect. Not too big (for sure), and not too little (we'll see), but good, smooth, creamy peanut butter. Time to go, and get back to a little more serious writing, especially since the scalawag is slithering just around the corner. Sounds rather sneaky to me. Something is coming though to throw the scalawag back a pace or two. Back you!! Get back!! We're having a party here, and you're not going to mess it up! Now git!

Now, turning your dial back to a more serious nature of one end result of the life of a donor's blood. . . being pooled with at least 999 others to make up an IVIG.

Hello, Dr. Ali. It is always so good to see you. Have a good night.

Toodles
Striving for a world without Myasthenia Gravis