Our 46th anniversary remembered

Forty-six years! Do you have any idea all that can take place in forty-six years? I started on this at 3:00 this afternoon, and with a few interruptions, I am just now getting around to completing it; it is 9:00 p.m. Lest there be any misunderstanding, there were not that many interruptions to prevent my working on it, just that I had an idea for which I was searching, and when I get my mind set, it is hard for me to let it go in another direction. In all of that,I never did get my Photoshop installed on here. Another time, I guess. Probably after this is published.

I did not plan ahead to do anything special about our anniversary here today, and now my mind is at work wondering what path to take. If you have been reading along with me, you will know that our Love for each other has developed a luminosity never before attained over these forty-six years. We were like most all young couples when we got married . . . very much in Love! For real. To the best of our ability to know what Love was all about. This new Love of which I speak, such as we had never before experienced comes from an accumulated depth gained from life's experiences you simply did not have as these two young people who only had eyes for each other. We believed we were untouchable. Trauma that brings with it anguish that one doesn't even think is bearable does not happen to "people like us." We had no worries in the world. All was right. We had Love for the answer to everything. We could do anything.

Jim was 22, and I was 19. Note: I was almost 20! Jim has said throughout all these years that his only mistake in life was marrying a teenager, and I just wanted to say I was not a teenager for very long after we married. He was quiet (as you can see, not all the time ;), somewhat reserved. Me? Pretty much the opposite. Jim did not have his first date until he was in the Air Force. He went to First Baptist Church, Montgomery, Alabama, and was a part of the young adults there. Yes, with them, he was active, but his comfort zone that we talk about so much today, was drawn close. Me? It thrilled me to be first. The first to break away from "It's always been done this way," or if no one else has tried it, I wanted to try it just for that reason if no other - within the bounds of my beliefs and morals, though, but there is one thing I did that I'll never understand why I did it, and that was to enter the beauty pageant my Senior year in high school.

You do a lot of things that year simply because it IS your last year, and I think it is a sense of testing the waters after all the protection of the past four years in high school that was preparing you for facing the future. You take these little daring steps to see how you'll do when bit by bit, portions of the shroud is torn away for fleeting moments. Me? The beauty contest? Oh, how funny! What a knee-slapper! I was not bad looking, just not a beauty. Wonder if that meant if I could do that, then I was fairly prepared for most anything in the wide open world? Have you ever walked out on center stage, and it your name was the name the guys are calling out now? Mortification! Think that's when I was brought back to reality. Interestingly, years later I was called out to center stage for presentation of flowers as the organist in a concert. That was altogether different.

Untouchable. No, I am afraid not. Those youngsters at the top had no idea, of course, what all their future held then in 1962. Would I change anything? Only one, and that would be the death of our son Robert. However, that was probably the strongest component shaping who we are today. It is hard to not get off on a tangent here, but just as I learned at that time, life moves on, and so must I move on now.

So. What about this Love I talk about us having today? When I was younger, and felt the passion of Love, I could not fathom . . ahem . . older people really knowing, still feeling what Love is all about. Oh, ho! Did I ever have it backwards! Our lives strewn about with all the kids events for thirty some-odd years, we never had a chance for one another as we did in those first days of Romance. I have stated earlier that once we shook all the kid stuff out of our . . ahem . . hair, we started laughing, getting tickled, even just plain ole being silly sometimes, nothing superficial, but something from deep within. I wish I could describe it more clearly, but I guess maybe you just gotta live it before you can know it, and at 65 and 68, we have lived enough to know it now.

My children and grandchildren have been the joy of my life for the past 43 years, but I am enjoying watching them form their own lives now into what they want for themselves, while their dad and granddad pick up where we left off a long time ago. It is a shame I cannot transfer the expression on my heart as I write this, for you would then be able to see just what Love is all about.

Untouchable. No, the young couple at the top were touched, and it was by all the ways that life touched us that brought us to where we are today. And, in fact, life is still touching us, so we are still adding to the depth of experiences that changes the luminosity of our Love.

Traveling home!

It is time to sit back, relax, and take a break. The last time we were at Barnes & Noble Jim found us some Gaither and Sandi Patti CDs from the 70s and 80s when we used to go see them in concert. They are now in my iPod to which I have stuck in my ears. At this moment, however, another I have put on here is playing . . . Pink Panther!

It feels good to just let my mind wander with no express purpose as I lie here. Okay, some may say that is the way it is most of the time. I think sweety over there would jump on that one right away, especially if he's been out around town running errands, doing those wifey things that have been thrust his way since becoming my caretaker. Even more so if he has been to the drug store where he has been cutting up with Jerry, and the others down there. What a cut-up!

How much can I talk, though? When I got out of the hospital last Saturday, Jim thought I might like to go some place to eat since eating out of those little plastic containers for the past six days, though I had just gotten something for the ole scalawag just before we left the hospital, and though it was one o'clock, and I'd had no lunch yet, with nothing at all since breakfast. No! Me? Eat? Oh, why, Jim, darling, how sightless how visionary of you . You've always been so sensitive that way, especially when it has come to eating out. :::wrinkling nose::: That's your specialty isn't it? It seems like it is always time to ask, "What do you want to eat for lunch or dinner?" Then you and I have these special diets, but in a way that makes it easier because they automatically cut so many foods out of the list of expostulation - ohhhhhh big word, live on Thesaurus! Ha! Ha! Was it you who said let's go out back go to Outback Steakhouse? Sure sounded good to me. It even felt like we were chasing the scalawag away.

We seem to have gotten here at a good time for the number one handicap place is empty. Well, actually, all the handicap places are empty to be exact. Aren't we so special! Up and out, roll 'em up the ramp, and there is Brittany. "Hellllo, Brittany! How are you today?" What a nice beginning to the outside world. She escorts us to our table where Jessica will be our waitress, and what a treat that will be!


Jessica was a pure delight. We had a most enjoyable dining experience, and it was not only because of the food, as delicious as it was, and it was delicious!

Once finished, though, it was time to finish the leg of our journey to Arkansas, and on home to Blytheville! As much as I get go irritated with it, still it is Home Sweet Home sometimes, especially after the week just preceeding it!

When we got outside into the parking lot, and while Jim was setting up the ramp, I just wheeled around taking pictures. Then when we got over into Marion, AR, Jim had to gas up, and I thought and got a picture of the Flash Market where we usually stop for gas and whatever else, plus there is a Sonic just down the street behind it.

As we drove on up I-55 towards Blytheville, I thought about all the people I talk to here on the web in the newsgroups, email groups, blogging community, and anywhere else I might be missing, and though I talk about the flat cotton land all about me, many or most have never seen its vastness - unless you live in Kansas maybe, and that is flat country! Remember my snazzy little red camera, my toy I had to get last month after I wasn't sure if my cutie pink one was dead, or just the battery was dead? I've been soooo happy with it, carrying it about whenever and wherever I go, it and my cell phone always ready for GO, so as we moved along I started snapping pictures out my window at a land that has become so familiar to us.

So some pictures form the rest of our trip home. One thing I noticed while working on these pictures - not a cloud in the sky.

What a beautiful day.

My most unusual IVIG hospital experience to date! Part II

NOTE: Direct quotes from my journal will appear in blue. Click on pictures for full size.

Here we happily come to Admin/Holding, the next step in the journey to the 3rd floor. Chris puts my stretcher next to the wall like they do upstairs, and it makes for much more room in there. Oscar fits nicely over in the corner. He places the globulin marathoners (IVIG bag on pole) next to my stretcher. Since I am tethered to them, they have to go everywhere I go. Everywhere! That means gathering the marathon runners, getting into Oscar, getting Depends and pads, and heading to the public bathroom. Here, it means having to be appropriately dressed/covered, whereas in my private room, I can be dressed the best way to accommodate my incontinence. Needing help for dressing or making a change in clothing requires help from the nursing staff For now, though, I am going to climb back into bed, and await lunch. Lunch comes late today, about 1:15, in a little plastic container such as is used in Same Day Surgery over at Baptist. Attempt is made at hot food, but really, there is nothing to keep it hot. Any way, for such a short period of time there, it certainly is not an issue. It is better once upstairs in a real room, on a tray, and in a hot plate. Maybe not much longer since I am starting my second day here.

A little while later Debbie, NP, from Dr. Saeed's office comes by. It is nice to see her again. I cannot remember what it was that alerted her to the fact that I might be from Arkansas, but when I told her I was, she asked where. She was from Bald Knob. A few moments of fun, light talking. From my journal, ". . . did a pretty good assessment. Going to do some PT in preparation some Home Health PT hopefully to strengthened my leg muscles, and have the speech therapist to see me about my swallowing, choking, throat area in general. She stressed the importance of taking the Mestinon on time. " She said the PT could not start until I was in a room, and she'd really like to see me in a room later that afternoon. (don't laugh at her and my naivety!), though I *did* tell her I thought it unlikely to happen today, Tuesday, because my neighbor was one ahead of me. We, my neighbor and I, had pretty much moved along together, one after the other. She noted the change, the weakening of my facial muscles as we talked. One other thing she noted of importance was that going five weeks between IVIG treatments is too long. My symptoms begin reappearing, and worsen too much.

I was very pleased with Debbie's examination and assessment of my Myasthenia Gravis, and with her plans to incorporate some new therapies with the Hope of assisting the immunoglobulin, those globulin marathon runners coursing through my body with healthy antibodies! *Happy smile* This is the type of thing that lifts my spirits, and pushes me onward with zest. It is a much better *pill* than the Prozac! It is something tangible, something to look forward to, to work for, to strive to accomplish. This is the positive position and attitude that is so beneficial for a myasthenic., and whenever I *am* down, and despondent, I want, and try to do something to rise above and out from that level. It is hard, but with my *team member*, the one that makes the two of us ONE, Jim is sensitive, and takes steps to encourage me.

This seems to be a day, or night as the case may be, for Debbies. I got the sweetest text message from daughter Debbie. It brought tears. Very happy tears. Caused me to have to ask for a box of Kleenex because my Puffs are packed in my bags, and I cannot get to them.

Anyone who has been reading this blog knows I will be staying with her and Mark following Jim's robotic prostate surgery April 30th.

Don't you know Christen (thirteen (13) year old granddaughter) and I will spend some computer time together, especially at MySpace. I need to overhaul mine with a new layout. We can watch videos. And we both love photography, so we will do some crazy photography. Who knows . . . we might do none of the above except for my getting my blog published! Anything else is possible!

There is no doubt I will be spending Tuesday night in here. I failed. Can you believe it? Me, the journaler of all journalists - ha ha ha very big joke! What did the great Ragdoll do? Or, not do in this case? What did I not do? I failed to get the hanging of the second bag of runners, gammaglobulin, recorded. A portion of my journaling got lost when I evidently fell asleep, and did that same ole same ole thing of waking to changes having taken place on my work before me. What I think happens is that I fall asleep with my mouse in my hand, and while dozing, it highlights portions of text, and then that text is easily deleted. Why, one time I woke to the screen of Publication successful! This is just a part of me and *My* Myasthenia. It is not quite as bad as it used to be, and is also worse whenever I am having an MG episode short of a crisis, and in need of sleep to restore my poor, needy muscles.

It is Wednesday, and the second bag has been hung. It contains a whole new batch of gammaglobulins, so they must acclimate themselves to my body, or my body has to acclimate itself to them. Which is the proper way to address it? Dr. Ali explained it to me one time. For my body, it has to get used to the more than 1000 new globulins. I think that's it.

"I sure hope I get to go to my room this morning. The inconvenience is not so bad, but being on this stretcher is beginning to cause some bleeding in the genital area and lower back with which I had so much trouble, requiring consultation with infectious disease doctor George. There is a funny story that goes with him on my first visit."

I can hear the globulins grumbling about being hungry, and soon some scrambled eggs are on their way to appease their complaints. That is all a done deal when it is med-time. Whoopee! Don't I just love taking all those pills and capsules. Yuck! Right behind the nurse, though, I see Dr. Saeed coming towards my cubicle.

I am anxious to talk to him. One of the things I wanted to talk to him about was taking Cellcept (not sure if that is the correct way to spell it). He said I still was not good, improved enough to do any medication changes yet, and we needed to continue on with our plan of five days of infusion every four weeks. I told him about the oxygen. Journal entry, "Oxygen. I’ve been on O2 since I came in. A couple of times I have been off of it and I can tell a big difference. Now you want to know the differences, don’t you? I knew you would. Should have done this earlier when it was fresh on my mind. For one thing, let’s just say everything about my chest area is “quieter.” I had been having a bit of phlegm whenever I had this cough which has started recently. Not much; just *some* which was significant because I was not used to having any at all. I am having almost zero coughing, and much better breathing while on it. There was definitely a noticeable difference. Dr. Saeed said he was going to leave it on there, write an order for it. Shrug If something is working why change it?"

After a few more words, Dr. Saeed left with my feeling good, secure with him, and his treatment plan. We did discuss trying to get some way to get backing to get the IVIG done at home. I told him about receiving a request for our financial records.

I had the tremors really bad, and checked my blood sugar which was low at 56. Thankfully breakfast was late today . . . One thing I enjoy about breakfast when I am here are the little cartons of milk. Wish I could have them at home. Hmmm . . . might just have a small glass today.

Just as I was settling from the hypoglycemic, Jessica Simpson stepped into my cubicle. And just *who* is this Jessica Simpson? She is the speech therapist that Debbie, NP, ordered for me. She is not the same one that I had last May. We went over all the swallowing, aspiration, choking, breathing problems, and she was going to order another speech pathology x-ray, and a soft food diet. I told her about the recommendations that Jessica in May had made. She thought that might be retired, but I told her since I have been a regular patient since then, that they would would probably still be active. She said she was going to Medical Records and check, plus draw up some plans herself.

I love a parade! People must have found out about our marathon of gammaglobulin runners, and this new batch of them, and wanted to come and see how they were fairing with my body today. They are about halfway through this Wednesday race; they should be finishing their part some time tonight. Each one is set for 24 hours, but invariably they run a bit longer than that; they are set to drip at 16.7 ml per hour. This group of globulins are making my head hurt worse, and beginning to include my neck somewhat. Elias comes by shortly after Jessica leaves.

It is not recorded in my notes, but I believe the nurses have put a request on the front of my chart for him to order the lollipops. The percocet is not working for the headaches. He said he saw it, and was going to do it. These meds for these bad headaches, the scalawags, are usually already ordered, and I do not have to wait for pharmacy to get them to the unit or floor. Hopefully, this will not be one of the times they take for ever to fill an order! That was about it for Elias' visit.

Jackie, the dietician, came by after lunch, and we talked about the soft food diet, and the possibilities for that. After she leaves I have a quiet afternoon with the increase in the headache, the ole scalawag, finally getting a Percocet about 5:30 .m.

5:30 p.m. "Been lying here for 48 hrs now. I am miserable. I’ve been lying in this same position for soooooooo long. I’m beginning to think - well, phooey, I forgot what I was saying because I interrupted this sentence for something." Copied.

Not long after that I get the excited word from across the nursing unit, "Mrs. Wages, we have a room for you!" Oh, I cannot believe it. Finally! I start to get my things, what few there are, together, but she (I completely forgot her name, but she had a yellow phone ;) said to wait, they had to get things ready, the report and all. So, I lay back to wait. Hey, what's a few more minutes. My heart beat with excitement!

Next thing I knew, I saw Joie. She had come down to get or give some paperwork. We saw each other, and she came over to give me a big hug, a hug filled with excitement. She told me how they had printed out the last month's blog with all the pictures about the IVIG, and they had hung it. They were all so proud of it, and just couldn't wait until I got back this month. She told me about Stephanie's reaction whenever she heard I was assigned the next bed, and said she had to go and get Mrs. Wages' room ready for her. From the first day, and Erica's idea, we put my bed against the wall, which leaves room for Oscar, and still room for people to get around in the room. We laugh, and call it Erica's design.

Just 30 minutes after being excited, and telling me I have a room, my lady with the yellow phone (Brenda?) comes to me to tell me there had been a "change of plans, that Dr. Saeed had been contacted, and he said only as long as my infusion was not interrupted, which she assured him and me it would not be." I said, "Oh, an emergency?" She just said, "Yeah. An emergency," then walked out of the cubicle. I'm a little slow to catch on. Why would an emergency change of plans need Dr. Saeed's approval? She had no expression on her face at all. That was the total of explanation I was given, and I believed that was what had happened. That is something I can understand and accept. No problem. Never have seen it happen in all the months I've been coming here, but there has to be a first time for everything. Right? Right.

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6:29 GOING TO A ROOM!!!! 7:00 Change of plan. Not going yet. *Emergency* supposedly came up. :( They already had the room upstairs turned around and ready. Joie was down here to pick up something, and she came in and I gave her a hug. She said Stephanie already had my room changed around. That means a room number had already been assigned.
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Copied.

I want to make this notation very clear. *I* was assigned a room on 3rd floor to the extent that the nurses there had prepared the room for my occupancy. This was not a maybe or possibly, but surity until *someone* came along and put out that fire.

I was disappointed, but what could I do? I had already turned off my computer, so turned it back on and did a bit of journaling. Not too enthusiastic about it. Mainly made the notation I have copied above. A little after 1:00 a.m. I got a warm washcloth to wash my face, looking forward to getting to my room to unpack and get to my clean up stuff, as I'm still going off of Monday morning's before I left the house; mine is packed and unavailable in my bags. I must smell and look awful. Yak!!

WELCOME ABOARD! Bag #3

Here we go with a whole new batch of gammaglobulin. Maybe they'll bring a room with them. Ya think? I'm willing to think anything at this point. It is Wednesday night, or Thursday morning, whichever way you want to look at it. In my notes, I have it as Thursday since I am keeping up with times of blood sugar checks, and when I get pain meds, and such.

I have to tell you, dear readers. I am tired of relating my week in the hospital, but it really does need to be done, and things really do get worse. My humor is hiding from me, but with the dawn of this new day, Thursday, and with Jim and the babies getting up, maybe things will be looking brighter in a little while. Going back over these events is making me feel blah.

It is amazing what a change makes. Everyone up . . . breakfast, morning time with Jim . . . listening to my iPod . . . reading an email from a friend from the 60s which had a photo that needed some cleaning up. It was from his slides circa 1965 he had scanned, and had cleaned as good as he could. The one I worked on was of Pat and Jimbo ("our baby" huh, Pat? ;). This was a good diversion. I feel refreshed (with some help from my pain meds for the headache I am sure), and am ready to get started once more while Jim is preparing us some lunch.

Thursday was a relatively quiet day for me, but I did do quite a bit of writing. I also noted some problems with my Mestinon which I will discuss later. I just do not understand why that has to be such a difficult thing for people to understand. I take 60 mg first thing in the morning when I wake. Two hours later I take the 180 mg timespan. Then I take another 180 mg timespan in the afternoon, and at bedtime. That's it. Anyway, there was no 60 mg this morning, so I had to take one from my purse finally at 9:30.

Evelyn stopped by on her way out. She wished me a Happy Easter. Easter. That was the first time I had realized it was Easter. We'll see. We'll see. I hope.

Lollipops! Finally something stronger than Percocet for the headaches! That helped. Supper was my soft food, and it was fine. I dropped off to sleep, and was wakened for vitals when the 7:00 p.m. shift came on duty. I had drooled, and all down the front of my jammie top was soaking wet, which meant a clothing change. Thank goodness for the way we, mainly Jim, packed with all my gowns and jammies in the red carpet bag, and I was able to pull out a clean set.

*All fresh, I fell asleep for another nap, waking around 9:30 with lots of commotion going on around my cubicle. I looked across the way, and could see that the one with the man in it, who was ambulatory for the bathroom, was empty. They were returning the hospital bed of the man in the cubicle next to me. He had been admitted with what appeared to be a foot injury. As I am typing this, my emotions are being renewed, and I do not know just how good my writing skills will be, and the exact chronology of my thoughts, journaling, call to Jim, and attempted call to Jane Garrett (always a busy signal to her pager) who had told me when she was visiting that I could reach her at any time. Well, this *any time* I could not reach her, and oh, did I need someone. JIM! My partner. My team member. My one who makes me one. JIM.

I was shaking so that I could barely punch in the keys on my cell phone (think I will set up my speed dial now, as I could have used it then), and when I got in touch with him, I was sobbing so that he had trouble understanding what I was saying, but I finally did get it across to him that they had passed me over, not once, but TWICE! I was ready to disconnect from the IV, and come home. You will understand my quick thought of this after you read my journal entry that I will have here further down, for I was already becoming very discouraged with my treatment - seemingly hospital treatment, not the IVIG treatment.

When I was finally able to settle down where I could talk to Jim, he helped me to see I needed to stay where I was because I needed the treatment so badly, especially from the shape I was in when I came into the hospital, and started the IVIG. When I got off the phone, my nurse Joyce was there with a Percocet and a Xanax though I had asked for neither. I suspect she thought I needed them to help settle me down. I took them. If that was her purpose, she was probably right. Jim had told me he would be down the next day after he took Ashley and Ashton to Cave City. After what I was told next, it was a good thing I had had the Xanax. Joyce said I was "going home tomorrow." Friday? I was only on bag #3 out of five. How could that be when each bag is 24 hours long? She said that she had the next bag, #4, and when that finished I would be going home. NO!!! It is supposed to be five, not four!! She said she was only going by what the doctor ordered. I asked what doctor, and she told me Dr. Elias. I am forever grateful for Linnie and Jackie. Only you two can know what you did, and what it meant to me. Oh, Linnie, how I wish we had gotten a picture of us together, and Jackie I'm glad you continued to get better girl.

Headache. Headache. Headache. Finally a Lollipop at a little after 12 midnight, Friday morning. I'm sure it has been worsened by all this upset. My hips are bothering me, too. This osteoarthritis does not like lying on this stretcher mattress all week long, either. We persist, the hips and I. I do fall asleep for a while because from 2:15 and 4:45 a.m. bag #4 is hung.

4:50 Scalawags are recorded! Percocet given. Not one iota of good for these kind of headaches. Just the kind we had been working to overcome, and had done the last two months, especially last month when we went five days at 16.7 ml/hr. Now it's been undone, and why make me suffer unnecessarily. These nurses have been great. Really, really great in a situation they are not used to. The nurses on 3rd have been doing this since last May, and between us we have learned a lot in the pain management of these scalawags. The nurses here have been great to work with me, too, especially Joyce and Jama here at the end of the week when things have been so bad, being caught in the middle of a very unpleasant situation.

Dr. Elias came by later on. His primary emphasis was on my bag of marathon runners that had been going since the middle of the night. Looks like I won't be going home on Friday after all. He did not speak to me. I ask if I could have Dilaudid for the headaches. He made a motion of okaying it. Every four hours. Jama was in the room during this *dialog* and as soon as she could, she brought me the injection. Finally some relief so that by 1:30 I was able to go to the bathroom and change my clothes. Ahhhh. It felt so good. I'd had those socks on since Monday morning. Moving from that one position felt good, too. At home, I can adjust my bed whenever I get uncomfortable, or my muscles get weak and painful from supporting my head and upper body, but this manual one, well . . . it cannot be adjusted to relieve the back and neck pain of the MG. No one, not even Dr. Elias I think, understands the secondary pain that is associated with MG. I have to sit up all the time, yet sitting up causes pain, and I must readjust my sitting position frequently. Cannot be done on a transport stretcher. Well, not without someone being at my beck and call continuously, and no way am I going to do that!! I said in another post that the hospital cannot adjust to me, I must adjust to it. So be it.

Dear reader, I am so tired of this. Almost, but not quite as tired as I was of being on that stretcher last week. I refer to my notes, then write, and I have to tell you, my transfer to prose is waning, and I'm quickly drawing near to just transferring the notations on to here. There are only a couple of things that I consider really noteworthy, one of them waking in the middle of Friday night with severe upper stomach pains, just over/under (?) my diaphragm, shooting up the left side through the left side of my neck, and out my shoulder. New, totally new. Not being able to turn, all I could do was grasp that area. That was about 2:00 a.m. and Joyce gave me a Percocet. I went back to sleep, waking again with the same abdomen pain, and Joyce gave me an injection of Dilaudid. I told her I was going to miss her. That brings tears to my eyes even now as I tell it. She was absolutely super! So was Jama. It was way past time for her to have been off her shift when she came into my cubicle to say good-bye. I quizzed her on still being there, that she should have been gone a long time ago, and she said she got behind on her charting. Out of 30 years of nursing, I was only the second MG patient she had ever had, and she told me what being my nurse had meant to her, which I will not recount here, at this moment, as there are some others I want to mention and will do a blog entry on all of them together in a separate entry from this, especially Jackie and Linnie.

We crossed over into SATURDAY with these stomach pains. Yay! Day to go home! Out of this place with a bitter taste on my tongue. Nurse this morning is a new one, Vanessa, and she is just the one I need on a day like this, after a week like this. Just perfect. For one thing she cleans off my bedside table, and lowers it! Something none of us have thought to do this entire week. *laughing* That's okay. I'll know next month.

11:00 a.m. and guess what! I had fallen asleep once more, and guess what I awoke to? My one and only partner, one and only team member that makes us one - JIM! No one more welcome, more blessed for these ptosis eyes to see! Yep, brings tears to my eyes to remember his showing up, too.

I was still having the scalawags quite severely, even with the dilaudid, and he told the nurse that he wanted to make sure that it was noted on my discharge papers in the space provided. She said she would have to get her supervisor, and we finally ended up talking with Amy, the acting house super for the day. She and Jim had, to me, a good conversation. Ha! Even I understood some of their hospital lingo talk.

Now, I know this is already super long, and if you are still here with me, thank you very much for listening, but I want to post some thoughts I had just written of my feelings. Blogging has been teaching me to do this instead of just thinking about things. They are all prior to Thursday. I'll try to keep them in chronological order as much as is possible because sometimes I just picked up my laptop and started typing.

"It is hard to keep my spirits up and going. This is becoming one of the worst experiences of all time, I believe. In addition to dealing with the IVIG side effects, I am now contending with my hips of osteoarthritis, the connective tissue diseases, and the pain of just my body touching the stretcher. I’ve been lying in this same cramped position for 72 hours now, beginning day four down here. I’d really like to see that there has never been an opportunity for me to go to a room other than last night when I got bumped.. Maybe last night was the only time. I surely do not know. If we are going to have to spend this many days down here, then something needs to be done to make it more livable. I want to find out if this is the only hospital Dr. Saeed uses, because this is just too much. It just gets a little worse each month. Where is the stopping point? Will there soon be a waiting list. That is just the thing. We know exactly when I am going to be here. The hospital knows, and gives their *whatever* on Friday before we come on Monday. Is that a preregistration or what? If so, then maybe they are allowing too many to preregister at a time. I just cannot keep from crying. Sure it is from everything all put together . I know that, but just how many *lotta little* things all put together can one cope with? Certainly a different amount for each person, and even different amounts for each of one at different times, and I think seventy-two (72) hours on a stretcher, bags still packed, and inaccessible, and blah, blah, blah . . . don’t you know I could just keep on going, going, going like the pink Energizer bunny (I have a bunny story I could tell, but it is way too sad to put out here for everyone. Why the tears it would bring everywhere. River banks would overflow, dams would do whatever dams do when they get too high. Oh, it is such a sad , sad bunny story.

A note in here . . . This is also contraindicated for the Multiple Connective Tissue Disease I have, and for which I am being treated. I also have osteoporosis, and osteoarthritis, especially in my hips, and that is causing me considerable discomfort. But only two things mattered. Complete the infusions, and do it by Friday. Me? Why, who is Me? This is the Me who spent six days on a transport stretcher at the whelms of whom? My neuro? My hospital internist? The hospital? All of the above?

Well, with 200 mcg of Fentanyl floating around in my blood stream, probably side-by-side with the new globulins, the tears have dried, and I’m feeling better. Of course, we all know that is a false front, a cover-up, but at least it is a good side effect from the pain reliever.

Abandoned. That is a veritable feeling I have. Even with the Fentanyl, the feeling is still there, but just more tolerable (say “less tears“) I guess you would say. Hey, out of seventy-two hours and counting, one time is not so bad Click. Click. Click. The digital clock on the wall clicks one second at a time. My cell phone has been so quiet.

Now that the pain has up and run away with the Fentanyl, it is somewhat brighter in here. Wonder why? J There must be a reason for this happening to me. I have been saying that God is doing something, working on something in my life (more than just patience maybe ;), so I cannot say that I can *see* Him working in one area, yet not in another simply because it does not agree with what I *want* or how I would like for it to be. Therein lies my patience, don’t you think? “Be still and know that I am God.” That is one thing that might be hard to achieve upstairs in my room. Stillness. Of all the places I go, right here in this corner in Admin/Holding is just about as still, and away from all other place I know that I might frequent, except my bed cove in the dining room at home. The curtain to my cubical is open to allow a little life in here with the gammaglobulins and me.

More quietness. My hearing aid batteries just quit, and the new ones do not fit. If I could just unpack, I could get to my batteries Wanda gave to me, but . . . You know the story. "

One nice thing about hearing aids. They are just little microphones. Mine are new, and have not been adjusted down, still a little high. This enabled them to pick up bits of conversation when they were huddled together just before coming to tell me the plans had been changed. I had picked up my name, and a few other familiar things that perked my interest. Not recorded, nor written here. Just in my memory.

We conclude with our good-byes, thankfully not with those who had been such a blessing to me during my hardest times, and from the few hours spent with Vanessa, I know that she would have been a joy to have as a nurse. There is truly some very excellent nursing staff of all levels at St. Francis - Bartlett, and I encountered some of them during this week. They did all that was humanly possible to make my stay as pleasant as they could considering the circumstances, and to my understanding, beyond their call of duty in some instances.

Toodles
Striving for a world without Myasthenia Gravis

* In rereading this I feel I have recorded the exact time incorrectly. Right now the file with my notes is not available for me to recheck it.

My most unusual IVIG hospital experience to date!

As you can see by the previous entries things did not go as they usually do. At first, it was much better. Admissions could not have been any better, except I was not able to be a direct admission. Not surprised with the way this hospital is growing by leaps and bounds, and having to enter an expansion program into the short years of its life. Their census is overwhelming. Thank you David Shaw for helping to have Dr. Saeed's orders there this time. We all got a big laugh out of the fact that there were four, three extra copies! That's okay, isn't it?

The only place they had they could put me was in the hallway in the ER, so we went to the waiting area to wait to be called. We did hear Evelyn say it looked like maybe there was someone in a cubicle getting ready to go home, so when we had to wait a while, Jim thought maybe they were waiting to put me in there. Sure enough. As Oscar and I had putt, putted, along behind the nurse, we just barely got through the doors, when she said, "Turn left right there," which I knew from prior experience it was cubicle #2 (was in #1 last month ;). Christen was my nurse. My, Christen, you sure did grow up fast, and I see you became a nurse. Noooo, Billie, it is unusual, but this is another with the name spelled with a *C* just like our Christen's is spelled. I got up on the stretcher in Cubicle #2, and did my best to get all comfy for the time I was going to spend here, and in Admin/Holding before going to 3rd floor, and *real* comfort.

It was most difficult to get comfortable, first of all because it was so narrow, and secondly because it was so stiff and hard. It will do temporarily, though. Jim went out and got my belongings for the week's stay. The afternoon was drawing on, and he was tiring, so he went ahead and headed back home. Check-in is so stressful for him, both physically and emotionally. Wish it didn't have to be so drawn out for him.

Christen got on with all the question taking. Oxygen was a bit low, so she started it. Oh, what a difference in my chest! She got interrupted frequently, so it dragged on. One of the interruptions was the report from the lab saying my blood sugar was 564. Christen called Dr. Elias, then I gave myself 25 units of Humalog, and was to check back in an hour with Dr. Elias. One hour later it was 400, which meant from what I had been taught in the diabetic clinic that if it was dropping, then the insulin on board was working, and it should be checked in another hour to check the status, and if still dropping, all appears well, but to keep on checking it. Instead, Dr. Elias order fifteen (15) units of *Regular* insulin at the one hour mark, an insulin I have never taken, and had no idea how it would work with me, and especially with my pump. Christen gave it to me, and we waited. Elias was looking for a >300 reading. We gave it to him at 9:22 with a 201 reading. That was satisfactory with Elias and Christen, but I knew I had two different insulins working on board, and I know how I go hypo during the night (down to 16 a year ago), so I made sure I stayed awake to check on my blood sugar. I ate graham crackers to stave off a low; 88 was as low as I got on any reading I took.

The hospital was unable to provide me with my evening Mestinon 180 timespan, and I was asked to get into my emergeny bottle that I carry with me at all times, and take one from that. I do not like it to be known that I have that on my person because in the past they have asked me to use my own meds. I took a Mestinon 180 timespan from a bottle of pills I had in my purse. It was my understanding that Christen noted it in my chart that I took my own medicine, and not one provided by the pharmacy.

My view from the strecher.

Christen got my IV started. It only took two tries. The left arm blew immediately, but the right one did beautifully. Now, we just wait for pharmacy to get all my little gamma globulin buddies readied as they will course through my veins as in a marathon. They anxiously await. I, their hostess, arrived about noon, and once finished with admissions, and in Cubicle 2, more than 1000 and upwards to 10,000 of them have been being preparing for this big event. The time draws nearer. I am anxious, excited. Last month's IVIG yielded such excellent results with the five (5) day infusion rate, and working with the nurses whenever the headaches started. All in all, an experience looking forward to repeating.

IVIG started @ 9:00 p.m. Monday, March 17th

And they are off and running! An IVIG for those who are new is an Intravenous Immunoglobulin with a link here to Wikipedia for an indepth description. Here, I refer to them as my gamma globulins, and sometimes my globulins. Just depends on my mood. The IVIGs since last May have brought enough improvement in my Myasthenia Gravis that I look forward to this treatment every four weeks. It is only baby steps that I am making, but to me, they are giant steps! Yes, I do get discouraged at the slowness of the process, i'll not deny that, and sometimes I wonder at the futility of it all; is it worth it all in the long run. I do battle with depression, and I have found other myasthenics do. We tend to hold how we are feeling physically because people tend to not believe us when we express our pain, exhaustion, etc. One thing about the ptosis, no one can dispute that! I have read on the UK Forum of those who are able to work that their peers do not understand them and their disease until it reaches a severe point. This is one other reason I came online, is to speak for myasthenics overall. I am not in control, and there is no doubt for me, but what about those who are moderately under control, and can partially function in their world, but with adjustments needed?

A couple of hours later, Dr. Ali stopped by my cubicle to say "hello." My journal entry, "11:00 p.m. Dr. Ali came by to see me. He is not on my case, but he saw my name and wanted to come by and say hello. Dr. Elias will be my doctor throughout the admission.. Does this also mean no Liesl? This saddens me, and puts a kink in things for me. It doesn’t mean that I do not like Elias, but he doesn’t listen to me like Dr.Ali and Liesl." Elias just asks me how I'm doing, but never checks me like a doctor. I've never known him to check my heart and lungs, leg swelling, and the other things that are pertinent only to the IVIG infusion. He *appears* to be unaware of my MG symptoms, especially bulbar and facial ones whenever they have worsened. If so, he never talks to me about them. He has no idea how frightening it is when you are having trouble swallowing, breathing, aspirating your own saliva, choking . . . and other upper problems. I have not seen him yet, so since he is the only doctor, maybe this time will be different since he is the only doctor other than Dr. Saeed, my neurologist.

Mercy, those runners are making themselves known, running all throughout my body, giving me all their good antibodies. At 4:00 a.m. my blood sugar reads 88 again. I have a new nurse on duty, Gregory. Ahhhh . . . a family name. In fact, that is Oscar's last name. I'm still on oxygen, and am developing a headache, though only mild at this time. Still considerable vision disturbance. Still a bit too soon to be noticing a big lot of change for the better.

The headache is progressing, and I get a percocet, with breakfast soon afterwards. Not much, but I'm sure it was bound to help. I felt really rotten when I was admitted, and am feeling better now; I'm sure getting my bg back to normal plays a big factor in that. Whoo! I'm not used to a 564 bg! What happened was my pump reservoir emptied on the way down to the hospital, and during admissions. I was hungry and had eaten an Arbys because I was so hungry, and knowing it would be a while before I could get something to eat. I was not aware my reservoir was empty throughout that time in admissions. Not until the lab came back with that reading. Refilling the reservoir got things under control once again.

Most of my meds were there by 10:30, a few trickling in at a time. My Mestinon was the main problem I had; my most important med, along with my Prednisone. With MG it is of the utmost importance that I take my Mestinon *on time* for it could be dangerous, especially so where it concerns my breathing. This is something I have had a problem with the entire time I've been receiving the treatments, but the nurses on the 3rd floor have just about all learned how it is to be dosed. I bring a detailed description with each admission. I gave it to Christen when I was admitted. It also lists all the medicines I currently am taking at home.

Liesl was down in the ER, and saw me in my cubicle. I motioned for her to "come in." We talked about the changes that had been made, all without my knowledge. I had had Dr. Ali explain it to me the night before when he stopped by to speak to me. It still was not completely clear to me at this point, but I did get the impression that I could request Dr. Ali to be my doctor next month, that I, the patient, had a say-so in the doctor who treated me.

From my journal following Liesl's visit, "Liesl was in the ER and stopped to say Hello. Told her to stop to “visit” after I was upstairs, that Dr. Ali had done that last night. An unofficial visit. I could tell they were disappointed at not being on my case. Not nearly half as much as I am. Gonna have to talk to Saeed about that. Makes me cry to think of this change.. Not good. Definitely a bump in the road. :( *big* bump!"

The first signs things did not seem to be going well for me this time. This concerns me because my *spirits* play a big part in the success of the IVIG. We really found this out last month when I was involved in the blood drive with Manic Mommy. It showed me just how much interacting with people was so good for me, not only with the IVIG, but with my MG itself. It has been my plans since the blood drive to find something else in which to get involved. My IVIG began to wear off right after the two (2) week mark, and by the 4th week, I was showing more serious symptoms, and by the time I came in on Monday, it had been five (5) weeks, and the symptoms had worsened even more. It was later determined that I could not go more than four weeks between infusions, something that Dr. Saeed and I had already established. This change was to help accomodate our family as Jim was due to have prostate cancer surgery on Wednesday, the 19th, and this would fit into our plans better. Well, now we see that it wouldn't have.

Just to make sure my pump, and everything was still doing okay, I kept check of my blood sugar, and it was always around the 88 mark. Good.

Chris and Brandon popped into my cubicle about 12:45, and said I was moving over to Admin/Holding. And just when I was so comfortable. :::Sigh::: This meant putting everything on the stretcher because I have to drive Oscar over to the other area. It is such a hassle to do anything down here because of my chair, and having to get it out of tight places, like in here. The guys get it all done, and we are off to Admin/Holding, the next leg of my journey in my IVIG treatment at St. Francis - Bartlett.

Since last fall the hospital census has been such that a direct admission would have to be someone severely ill, or in need of the cardiac room. Coming every four weeks as I do, I pretty much know the drill, and expect to spend at least a day in the ER//Admin/Holding area, not always having to go to the ER area first, though. And when they are having to put me in the hallway as they did before, and were about to do so this time, it means they have many waiting to go to a bed upstairs. I know the drill; those first-timers do not know to expect that, and many get very upset. In fact, the patient's husband in the cubicle next to mine was quite upset, and oh, my, they still had the next step yet to go. I wonder if their doctors tell them about the waiting. Dr. Saeed did from the very first time last May, and that was only for a few hours of the same day of the morning I saw him. He was wanting to admit me on the spot. It was not untl later, as I learned more about MG, that I understood why he was wanting to get an IVIG started as soon as possible. *We* thought we would be doing better by coming home, and returning early Monday morning. Oh, boy, were we ever wrong! We should have stayed on that Friday!

From my journal entry, "Chris and Brandon moved me over, I drove, they piled everything on my bed, Brandon brought it, Chris came with me, handling all my tubing. Got an extension on it so it isn’t so short this time."

The move did not disrupt the marathon. Chris carefully handled the bag containing my marathon globulins. They probably did not even know what was happening, which was good. They continued on with what they were called on to do, bringing those good antibodies into my body to replace my bad ones.

See you over in Admin/Holding, gammaglobulins and all!

Toodles
Striving for a world without Myasthenia Gravis

Looking back at Sunday

Lots of things have been going on that is messing with my intended schedule, so here I go with doing the best I can.

I was discharged from the hospital with the severe scalawags (headaches), and I am contending with those, too. What I may have to do is some short, chopped up entries. Just whatever comes, you know me, I'll just roll along with it. Just begging my readers to keep checking with me as I report my IVIG from last week, and get caught up. Didn't get to have any internet during the week I was gone, so I am waaay behind!

Yesterday, Sunday, we took Christen over to Jonesboro to Turtlecreek Mall only to get there, and find the mall closed! Everything that is, except for Barnes and Noble with Starbucks in it. Well, phooey! This was to be a Spring shopping trip for Christen, so she was especially disappointed . . . pout, pout. What to do now? No other shopping place. Christen says, "Could we eat at Arbys?" Sure, that sounded good; we do not have one in Blytheville, and always look forward to eating at one. Then, she saw Chili's, and oh, she loves Chili's, so Chili's it is instead!

Being the good blogger that I am, I finally remembered to start taking pictures; didn't think to get one of the mall, but I think I was too surprised to find it closed to think of picture taking because I had already been taking some on the way over there when I thought a state police car was stopping us from in front of us, and wanted to capture THAT on camera. However, it was the car in front of him that he was stopping, so I have a free picture of a state police car with his lights flashing if anyone is interested. Yeah, right.

Got to taking some pictures at Chili's, though, and didn't have good luck with getting good pics of Christen. Seems like I snapped the camera just about the time she was moving her head. Which came first, the head down or the camera snap? Such, such a shame, too, because what a beautiful thirteen year old girl.

Here, l try and see if I can do better with taking Jim's picture. Well, he is older, and doesn't move quite so fast. That probably helps a lot. Plus some planning







Oops we missed again! Cannot imagine what is wrong with me, the veteran photographer. No better than this? I have just got to try and do better! I am doing MY best . . . subject is evasive.







It was a beautiful day, and I caught her as she was looking at something outside. Do you believe that? We are having terrible luck. Never before have either of us had so much trouble getting pictures. Just have to keep on trying I guess!






Granddaddy wonders if getting close to Christen will help me any. Oh, my goodness, she happened to move just as he moved her way, and I snapped the camera! She almost fell out of her chair getting away from him. What?!?!? is it going to take to get a good picture of Christen? This is so very unusual. I mean this girl is a camera, picture taking addict almost. Why you should see how often she is adding to her MySpace pictures. Maybe it's because she is used to taking them of herself with one hand. Hmmm. Maybe I should have given her the camera.

Well, look, I finally did it, and just the right time, too, for Christen was tired of my efforts, though I was really trying my best. That was it for picture taking inside. I would get some when we got outside as Jim and I usually do. Christen couldn't believe I was still going to be taking more pictures, but then she's not a blogger, is she? She is a teenager with a MySpace, and lots of pictures, so I don't know what happened here yesterday. *very big smile* I was hoping the downer of the foiled shopping trip would be lifting somewhat, but it didn't seem to be working. :(

Once outside, when Jim started loading Oscar into the Expedition, he asked Christen to take pictures of him loading it because I can never do it since I am already in the car.

After giving the camera to Christen, but before getting out of my chair, she took a picture of me in front of Chili's, which I thought was very good. Plus, the princess' *stepping stool* to get into the car (I know you all call it a *truck* but I have not arrived at that point yet) is also caught in the picture. It was amazing at how much it helped the mood once a camera slipped into the palm of that sweet little thirteen year old hand, the hand of my granddaughter. *s*

Probably only my family knows what a difference it is for me to be feeling okay about putting my picture out for it to be seen. This is a BIG turnaround for me. A definite example of my rising self esteem. I have always been tall and thin until my run-in with Prednisone. It changed my facial features so drastically that I would not even look in the mirror unless I just had to because I did not recognize the person there. So, it makes me feel good to share this picture with me in it, not that I *like* it, but that I am accepting it as a part of me at this point in time. I have been so ashamed of how I looked. Not beautiful, but I am acceptable to me now. Nice. And especially with the new hair-do!

Settling down to watch a video on the way home, with Oscar loaded in behind her.

Christen had a big fashion trip to St. Louis planned for today. They would be going to a fashion show, spending the night, and doing some *fashion* shopping of their own, looking forward to Spring and Summer. While she watched her movie, Jim and I figured out how to help make her trip a good, fun one, so that by the time we got home to Blytheville, we had enjoyed being in the role of grandparents. For once things worked out that we could do for her whatever we wanted to do. She was unaware of our shenanigans.

While in Jonesboro, Sarah, the girl with whom she was going to St. Louis, text her and wanted her to spend the night. Therefore, when we got back into town, she needed to go by her house to get her clothes for her trip while we ran an errand. When she got into the car, and we told her how we'd gotten her trip pulled together for her, she was very surprised.

One thing I think Christen is wanting to do is to slip into Ashley's thing of asking Mammaw for money for this, that, or whatever. I say this because of what Ashley had told me in the past of tryng to teach Christen how to *work* Mammaw. That is meant in a good way. *s* Anyway, after making sure the fashion shopping trip was backed up, I gave her some money that was to be just for food so that it did not eat into her shopping money. I could just see her having to use all her money on food, and there not being enough for whatever she found at Hollisters. Ummm . . . did this grandmother spell that right without going to check it out?

Want to know if it was all appreciated? Well, in my Inbox this morning I had a notice that I had a comment from Christen, and when I went to my MySpace, there I found the sweetest note from Christen, and that she would take some pictures for us to share whenever she got back home. Now, you tell me. What grandmother could resist such an act such as this. Will the pictures make it? Only if they don't get in the way of her having the time of her life with the others, but the comment from MySpace. Well. That's a done deal, and within the realm of the thirteen year old, and not the grandmother. I told her on the way over to Sarah's that since she went so many years thinking we didn't love her (she asked, "How did you find out?"), that we had some making up to do. From happenings recently, I think she is beginning to believe that she IS loved by granddaddy and me. Christen does not understand one other thing that makes her special, and have her *own* thing the others do not have . . . I cut the cord whenever she was born! Her dad and I were in there with her mom, and he said he just could not do it, and I was thrilled beyond all measure to be able to do it, and snip, snap, I did it, and have always cherished the memory. She'll understand the older she gets.

This is the youngest picture I have of her on this computer.

Gotta do better, Mammaw!

Thanks, Christen for wanting to go shopping yesterday. It was a great diversion for Mammaw and Granddaddy, giving us a chance to shake loose from last week, and gear up for all that is facing us this coming week. It is Spring Break, so maybe we'll be able to get that shopping trip for you and me later in the week. I won't have had the fashion trip, and you know *I* will be ready to go any time the body will allow it. Let's go girl!! Thanks for all the Oscar pictures. Okay, saying good-bye!

Toodles
Striving for a world without Myasthenia Gravis