Friday, February 29, 2008

I wondered what would happen . . .

. . . when I felt too bad to..........everything! Well, everything relating to my blog that is. Right now is that time. You know I started out at the beginning not wanting to write about the down times, and that has not changed one iota! But, this is all part of the journey, I guess. I'm out of my *gem* pills , so there is nothing to keep the flood of tears from overflowing their banks. No reason. Just everything. A few Keebler Grahams with Cinnamon fixed the flood, plus *I* think that writing has staunched the flow, too, so if you have read this far, you have listened, and it has helped me . . . thank you. ;)

What really sounds good, is to just have fun. That is what I thought whenever I pulled the coumputer up close to begin working, and why I chose a color that would show for me, at least while I am composing. Might just change my mind by the time I am finished, and if I do, that's okay. Blue is used too often, and I've use the deep red sometimes because it goes well with the layout, leaving purple and green. Again. There it is. Orange. You know. One of these days, I really might do a post in orange. I'm trying to think of something I have that could be worked up in orange. Not now, though. Let's not push the *doing better* button too much, and *overdo* it. If something should go awry, it might take more from me than I have to give just now, as the weekend with Ashley and Ashton did. One thing I *think* I have learned, and that was to make it workable, set it aside, and then go on, coming back to it when I felt better.

THIS is what happens! You fall asleep, and the hand jerking hits one of the keys, *or* in your sleep, you hit Publish Post accidentally. However, all is not bad. I was checking my blood sugar every hour to see if it was coming down after a correction bolus.

I was going to delete this when I saw it published (surprise!), but realized this is a part of me that should be seen. Oh, well. Thanks again for reading this, for listening. The scalawags are back in full force today. Really bad, and I don't know why. :( Maybe that is why I have been sleeping uncontrollably all day. It is now 4:36 p.m. and I've not accomplished anything because I cannot stay awake. We'll see if lolly will help release me from the pain, yet not put me to sleep, and I can do the things I love to do. I can tell the inside of me feels better than when I started this last night. Is that a good sign? Hope so. I just do not like talking about the bad times. Guess this is why we go around stuffing things inside, not letting people see *all* of us. I'm trying, though, really trying to let *all of me* shine.

I hope you are having a good day wherever you are.

Striving for a world without Myasthenia Gravis

Monday, February 25, 2008

A very nice weekend visit

It was a nice weekend of visiting with Ashley and Ashton. She sent a text Friday to see if I wanted to hang out Saturday, then said she didn't have to be back at work until Tuesday, so she had the whole weekend. I asked her where she was pitching her tent, and she said she didn't know. I hung out the welcome sign for them here. We made tentative plans to meet in Jonesboro Saturday. She would be calling me Saturday morning for the final plans.

We scurried around Saturday after Ashley called confirming our plans, going from bank to bank gathering gas, eating, and shopping money . . . a little here, a little there . . . with plans to go to Turtlecreek Mall, I wanted some spending money in my purse (I need a new purse). It's been soooo long since I've been shopping; didn't even get to do any shopping at Christmas. A "Born to Shop" woman can only go so long without hitting a mall or two, and here we would have two of them who had been shopping deprived! (what kind of purse do I need to get?)

We also needed to stop by the drug store. I took the opportunity to test the snazzy red camera on readiness. Yeah, think it will do; think I will keep it. That reminds me of something else I need to look for at the mall . . . a toy bag or holder. Francesca's might be a good place to look for something like that.

As we neared Jonesboro, we decided to eat at Outback Steakhouse. I had told Ashley we would meet directly inside, in the middle of the mall, in the general area of the food court.

Jim said he would go in and get them. Uh, oh. We had not talked this one through. Not only had we not talked it though, we had not even talked about it at all, except to choose a place to eat. I guess it is communication that we realize we did not communicate to begin with, huh?

The way things worked out, we had not eaten lunch when we got to Jonesboro. That gave us two options:
1) Get a snack right then, and shop, eat at Outback later
2) Eat at Outback now, and go to the mall afterward

Jim said he really didn't want to eat any snack food, so we decided to eat Outback first, shop later (purse maybe?)

Now . . . we are back to the point of his going inside to get them. He returns empty handed.
:( Yes, I know. Sheila had to drive her car over to where we were parked to transfer their luggage to the expedition.

Oh, how wonderful to see them! Well, actually, I can only see Ashley, but I can hear Ashton. Ashley warns us to be ready. He can growl like a bear. Uncle Jim, you better watch out!

Upon arrival at Outback Steakhouse, we have about a fifteen minute wait for a table,

at which time Ashton goes ahead and begins to eat.

We had a poor experience at Outback for the first time ever, and it not only threw us running very late in the afternoon, but was also a very tiring experience. Therefore, we headed on home rather than going to the mall. Except . . . . we did stop by Starbucks for Ashley's and my favorite coffees. We deserved them. At least we thought so, especially since our shopping excursion got squelched. ;-) After all, there was Monday, right? Sure. ;)

Ashton and Pedialyte

How we spent Saturday night.

Part II Coming up

Coming to a blog near you

A weekend spent with Ashley and Ashton.
Coming soon.

Friday, February 22, 2008

A Post IVIG day accounting

Appointments for this week - Wednesday for biopsy with Naidu, and Friday with Wanda Logan, Audiologist - had to be rescheduled. Traveling back and forth to Memphis was just too much to undertake this soon after the IVIG.

Not a complaint. Just a fact.

I am doing too well to risk having a set-back with the trips which are not absolutely essential, and could not be foreseen falling after the IVIG as they did when the appointments were made. They could have been done, but the days following would have been at risk, and I might have found myself regressing rather than flourishing as desired, and seems to be happening. As it turned out, the decisions made were the best. Sleep was needed. More sleep is still needed.

Striving for a world without Myasthenia Gravis

Thursday, February 21, 2008

Granddaughters are such FUN!

What a fun day it has been! I started to write about something serious, but my spirits just do not *lean* that way after the company I've kept.

For whatever reason, Christen was unable to go to school today. At times like this she can opt to come down here to stay with her Mammaw and Granddaddy. ** Lovely idea. ** She and I have not had a lot of one-on-one during her lifetime, so whenever it is possible, I dearly love it. What's not to love about those chubby cheeks. *s*

She had been using Granddaddy's laptop, but here she was now standing before me.


Oh, I recognize that soft, sweet voice (she's learning ;). "Can I use your computer to go to MySpace and work on my layout?" (She knows I'm a sucker for that)

"Granddaddy wanting to use his?"

He was.

Give me one good reason I should have given her a "No" answer. I had everything to gain, and nothing to lose except being alone, and I get enough of that every day.

"Sure" just barely escaped my lips, when these long legs came lumbering up, and over me to the other end of the bed. (My bed and couch have placards on them that say, "Stand and walk on me." ;) You believe that don't you?

First thing I did was to show her my new *toy* I got at Best Buy Tuesday, my sleek red mouse. Varoom . . . it looks like a red sports car. Yep. She wanted to use it. Hmmmm. She liked the feel of it, too. It has both of our votes. We went to her MySpace, and looked at pictures with her showing me her friends, and her telling me what they were up to when some of the pictures were taken (some very intuitive girls), her chuckling when relating some of the incidents, or talking about some of the girls. One of the girls in her class died of a a brain tumor recently, and she talked about her. She clearly has a lot of fun with her friends.

After a couple of hours of that she went to redesigning her layout at MySpace. Mercy, mercy me! The hundreds of pages of layouts available! This was ME learning from HER! I knew these things were out there, but not where, nor under what type of heading to do a search. Thanks to sharing my laptop with her, I have them in my History for use sometime in the future in a relaxed, leisurely sort of way, just scrolling through them for ideas.

Interspersed in her, ahem . . . hoopla & hullabaloo at MySpace she showed me a few >things about my iPod Touch. Little by little I'm going to learn to use it, yet. It's primarily a matter of *seeing* ! If I could just *see* everything, that would help a whole lot. With the Touch, it also seems to have a lot to do with technique, as those nimbly, wimbly, little thirteen year old fingers just glided over the reflecting, glazed-looking surface. Whoosh! Whizz!

"I'm going to save for one of these," she says.

"You can do it, Christen, if you want to." And she really seemed to want to. We'll see. Wonder what there will be on the market by the time she saves up for it?

Striving for a world without Myasthenia Gravis

Wednesday, February 20, 2008

Manic's blood drive is a success!

Manic Mom's blood drive is winding down to a close tonight.

It has been an exuberant time for me since I found out about it. I found out about Manic through Patricia Wood, author of Lottery (I'm still trying to get an autographed book ;). She followed me from Manic's blog, then she contacted me through my blog because her muse is a cat like Anna Kay. Then I went and checked out Manic's blog. Saw her blood drive in progress. Sent her an email saying "thanks" for the blood since I am a recipient each month of pooled blood of more than 1000 donors. It was just one of those "one thing led to another" type situations.

While Manic, and the other moms were excited about something from a perspective different from my vision, it is all still part of the same ball. It goes round and round filling needs everywhere. I can just see it now . . . that big ball rolls along picking up the donated blood, carrying it hither and yon, combining it until there is enough to meet the demands for the end product, when it will then start rolling along once more, now the finished pooled blood product containing all of those good, healthy immunoglobulins to be given to people like me, to replace our decreased or abolished antibody production capabilities, and help our bodies to keep it from fighting against itself (autoimmune diseases) for a while; this is not a permanent solution, more like putting on a band-aid for a few weeks or until control is reached at some point, which is what I am reaching for - control, remission, absolution of symptoms.

Something just struck me. For women. Those of us with straight hair who wish it to be curly, we get permanent waves. We go to the beauty salon, get the permanent. At first our hair is all curly. Gradually the curls begin to relax or loosen, until we virtually have no more of the permanent wave left in our hair, and it is straight once more, and time to get another permanent, so back we go a new perm. The hair is still good. It just needs a boost. The permanents do not change the status of the straight hair. The permanent is not going to change it from straight to curly forever. The IVIG is not going to make any permanent changes to our bodies. While all those immunoglobulins are still active they are going to help, but they are not indefinite. When that bunch are done in, I have to go back and get some more. At the same time the doctors are working with other drugs that *do* work to help our immunocompromised bodies. Another time I will talk about drugs that are associated with MG, and how they work.

Stop by Manic Mom's and tell her thank you, and how much you appreciate her for this great effort. It was something she did simply out of the goodness, and gentleness of her heart (yes, it says *Manic* and well, maybe she's, uh . . . alive with energy, but *that* is great! ;). She is a funny, loving, caring person, and has already stated this is the "1st Annual . . . . " so you can look forward to this again next year. Me? I'm ready to go again! Watch out! LOL

I have found, through this, that people are ready to do something good, and are willing to help each other, they just do not know the means of going about doing it.
Yes, we all do it to a degree within our private lives with those whom we come in contact, but rarely do we have the opportunity to meet up with our neighbor across our state, country, or "across the big pond" as we like to refer to the Atlantic Ocean. There are enough people with computers today so that "Getting to know you over there," is becoming no harder or more unusual than getting to know someone on the other side of the town where you live. But, there needs to be someone to pull it altogether. It doesn't just happen.

We often ask "Why" whenever our lives are struck with diseases that impact our lives such as Myasthenia Gravis does. It has turned most areas of my life around 180 degrees, and that has been the biggest "pill for me to swallow." The IVIG treatments give me a few weeks of feeling a bit better with more energy, and for me that is energy to get in and out of bed, feel up to going to Wal-Mart or the mall, both of which are fun and lift my spirits. I am able to swallow better, breathe better, have a sturdier neck with less pain as it tries to hold up my head. My legs still have not been positively affected by the IVIG. However, it is not for sure that they are only affected by the MG. This is not the time for delving into that, though.

Whenever I ask "Why" today, I wonder if it is to seek the reason God would have had me go from the person I was to this . . . well, what would "this" be? What would you call me? I do not like any of the words that typically describe someone such as I, and that is inVALID, disABLEd, !HANDIcapped, unABLE, bedridden to name a few. The idea of putting me in an assisted living facility came up within my family recently. SQUAWK! Another thing that this is not the time for indepth discussion, too. But, really. If you start putting everyone who cannot walk, or are in wheel chairs for whatever their reason into nursing facilities, where would you put them all? Besides, I am going through these one week out of the month treatments because we are looking for improvements, not to stay the same, nor get worse, but to IMPROVE! Will that happen? We do not know. No one can say, but there is more documentation for improvement than for anything else. It was the first thing I found about MG. Remission is possible. BUT, not cooped up in some nursing facility! Dr. Ali says I am smart, and I have too much living to do, and I know what dear Arthur Franklin will say, too, when I tell him about it! He has watched me fight too hard since 2000. Well, I cannot stay on this subject now; my fighting spirit is being stoked, but I do want to say that my son and daughter made me feel - well, what is the best that one can be made to feel? Whatever it is for you, then that is what is was for me, whenever we discussed this issue recently. With what they said, it helps to strengthen my resolve to keep working through my blog, and any other means that I should find along this road, to help others.

I know now that there is a lot of activity out there in the blogging community alone, I'm just learning my way around, and I am curious as to what is out in the cyber world beyond that nowadays. I am not new here, only the bloggers' world. I've been here since the mid 90s, having been around during the web ring days. I *know* and with the blood drive over, I will not stop, but go searching for what God has in store for me next, because I am sure He is at work doing something in my life. He showed me this during my hospitalization. Sometimes, God just needs to slow us down so we can hear Him. I could easily be that kind person. *s*

"If I can help somebody as I pass along,
Then my living will not be in vain."

Striving for a world without Myasthenia Gravis

Tuesday, February 19, 2008

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,

Striving for a world without Myasthenia Gravis

Monday, February 18, 2008

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 . . .

Striving for a world without Myasthenia Gravis

Saturday, February 16, 2008

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

Dr. AliThe 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}

ErnestMonday 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
Taping down the tubing to hold it secure
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
Ernest putting splint around my armThen 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
IV monitor

Bag of IVIG product
The IVIG bag

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.

PatriciaPatricia 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.

TanyaHere 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, 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.


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 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!!


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 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.


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 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.


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 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.