Friday, February 27, 2009

Moving along

Moving along but very slowly. In my opinion, I believe I still have symptoms of the kidney infection. No need telling anyont, though because I'm asymptomatic and they never believe me (Jim either) until they do a culture. Happens every time. One doctor even told me to tell them I am asymptomatic and to do a culture. HA HA What in the world is my word good for. Maybe if some doctors would have listened to me more in the past, I might...might, I say...have avoided some of these urinary problems. Maybe not completely, but maybe the severity. Who knows. None of us do. They missed a ruptured disc when I pointed out the symptoms very plainly. Ahhhh...but I'm just a complaining female aren't I? I'm just out for the drugs. Loaded down with kidney stones, but all I was after was pain medicine. I have to beg for enough to be comfortable to feel like other people feel. Nobody wants to hear me complain, yet nobody wants to get me what I need to be free of pain. I said I was thinking about writing about pain, but chose not to because it was so negative. Well malarkey!!!!! I'm not the only one encountering chronic pain. If my Rx comes in the mail, if crawling on my hands and knees to the pharmacy would get them filled for me, I swear I would do it! I doubt myself sometimes, surely I do. But only because others have doubted me.

See me go.....

.....the Rx came but I didn't have to crawl to the pharmacy thank goodness, Jim drove there for me. I'm feeling much better. I can move more freely. It was so sweet of him; just as soon as he looked at the mail he said he would go up there for me. I asked him if first if he would go up to Cherry Tree and get me a Snicker before he went to wash clothes, and he came back with a Snicker and a Sonic coffee, too. He surely helped to make it a much nicer afternoon for me and for us.

See you later alligator.

Wednesday, February 25, 2009

At a stand still right now, and pretty fatigued.

I'm going to have to take a break today. The changes in medications seem to be taking its toll on me, and I'm going to have to take stock of what I was taking versus what I am taking now. That means looking up those involved and see how they react if and when they are changed or added. Be back.

Monday, February 23, 2009

Still progressing ~ "Better Life"

Better Life

Friday night and the moon is high
I'm wide-awake just watchin' you sleep
And I promise you you're gonna have
More than just the things that you need
We ain't got much now, We're just startin' out
But I know somehow paradise is comin'

Someday baby, You and I are gonna be the ones
Good luck's gonna shine
Someday baby you and I are gonna be the ones
So hold on
We're headed for a better life

Oh now there's a place for you and me
Where we can dream as big as the sky
I know it's hard to see it now
But baby someday we're gonna fly
This road we're on, you know it might be long
But my faith is strong
It's all that really matters


So hold on, hold on
C'mon baby, hold on

Yeah, we're gonna have it all
And ooh


Oh, a better life
Hey we're gonna leave this all behind us baby, wait and see
We're headed for a better life, you and me
We're gonna break the chains that bind and, finally we'll be free
We're gonna be the ones that have it all, you and me
Just hold on tight now baby

God NEVER promised us an easy life. Never. He DID promise to give us strength and to love us and carry us through those hard times. HE will see us through, if we let him. We have the promise of eternal life…and a MUCH BETTER LIFE than we have here. We need to use THIS life to make a difference in someone else’s. Some people focus on making things better for themselves…what’s happening in THEIR life- we know our carepage readers are the other kind- people who focus on making things better for someone else, and for that we are FOREVER grateful. Coleman's journey has taught us, there are SO many AMAZING people who care. With all of the news aired on TV about how bad things are, ONE thing we know is the love of God has been and continues all around us. People are doing so much good for one another, and it warms your heart.

Like the words Coleman sang…
“Someday baby, you and I are gonna be the ones, so hold on…we’re headed for a BETTER LIFE!”

We’re holding on Coleman.

by Peggy Larson

Just as Peggy has written, and I have also said for many years now, we were not promised a perfect, easy life, but God *did* promise to be there for us, with us all the way. People have asked me many times how I, *we* got through all we did, and the only thing I could say is that when we needed the strength, God was our refuge, our strength during the troubles. He NEVER, EVER let me, *us* down. I include Jim here because as we have talked, he, too, has voiced the same feelings. Without our foundation I do not see how we could ever have made it. There have been SO many things that have not even been mentioned here. There are many our children do not even know about, but my plan is for them to know about them as time goes on. Praise God. He has brought us through it all individually. Beginning in our childhood our lives have been shaped and molded, maybe not like our children would have liked, but in a way that prepared us for the future we were going to face one day. Jim didn't ask for his trials and tribulations, nor did I ask for all these diseases that impacted our family so devastatingly. When I went to Co-D therapy, I found that chronic illness is at the top of the dysfunctional family, and I think maybe after child of an alcoholic. Ha ha. Guess where I fell? My poor family never had a chance did they? WRONG! They just cannot imagine what it might have been like without the blood and the power of Jesus Christ. I don't even like to think how far they might have gotten without Him in our lives. Perfect? Oh, my no. Not by a long shot, but He knew that; He knew our imperfections, our impurities, and He has been there to wash them out of the way so He could work His work in us. Oh, thank you Jesus!

So where does this put us today? A few more antibotics yet to take, and I can tell I still need them, too. The Estrace is working, but it is needing more time. That problem did not happen overnight, and it for sure is not going to heal, and replace that skin overnight. I want to say my left side is A-1, but not so. I *am* feeling somewhat better, but falling off into MG naps, and waking feelig better, and stronger which means they were needed. I guess that all adds up to the acute situations showing marked improvement with the MG moving along as usual, only still having to take the higher dosage of pyridostigmine. My eyes (ocular MG) are still giving me the most trouble.

I can only praise and thank God I am no longer in pain. That was absolutely horrible. Wednesday night in Jonesboro for the IVIG, it is absolutely impossible to accurately describe the pain. Jim was in the bathroom with me. He sleeps in walking shorts, and I grasped them with a clenched fist with, I guess all the strength my MG allowed me, and I just cried and screamed J-J-J-J-i-i-i-i-m-m-m-m. Oh, God! I can not remember calling out to God like that ever before, but then I just screamed and cried until there was no sound coming from my *voice* (is that the right way to describe it?) yet I was still screaming. Maybe that was to keep the neighboring rooms from hearing me, I don't know, but I do know it is how torture feels. I've always wondered why people cried, screamed, etc., because it did not stop anything, but it does offer some amount of consolation (?). I looked up at him and asked what we should do, and he said he didn't know. I think it was he who mentioned the ER, and that was the only solution I could think of, too, so I went in what I had on, he put his jeans on, and off we went.

The ER is not a place we go unless, well, unless it is an obvious emergency. How do you weigh being in pain an emergency. On top of the pain was all the bleeding, so it wasn't so benign. They were not too busy at 3:00 a.m. and they took me on back before too very long, and got me up on a bed thank goodness! Questions and questions, and they ended up giving me a shot of morphine which didn't knock me into another world until we got back to our room in the Annex, so I was still able to drive my vehicle. :) They had wrapped me up good in a wonderful blanket, and I wanted Jim to buy one for me. :(

I got up and made it over to the hospital in the morning for the next day's IVIG treatment. No way was I going to let anything stop that. The morphine kept its stupid side effects going most of the day. I slept all day, and said crazy things. I sure hope no one holds me accountable for all of it!! Thursday night I hoped I could sleep or be quiet so Jim could get some sleep. Not sure how much sleep, but at least I didn't get him up and over to the ER again. Just to endure Friday, and then go home. Jim had managed to get me an appointment with Gubin, urologist, on Monday afternoon. That was when I found out what all was wrong with me, and feel like I was on the trail to recovery finally.

I have skipped over Thursday and Friday lightly, but they were more of Wednesday night, except that I was doubling up on my pain meds so managing to get by, and put on a happy face when needed. It caused me to run out of my monthy quota, but what else could I do? I couldn't go to the ER every day. I don't know. I had no answers. It was like nothing I ever experienced ever, ever before.

I have held this open for something else, but have now decided against it at this time, so this will find me saying adieu to you for now.

Sunday, February 22, 2009


Bobby says it's lots of sleep, but foremost of all was the call from my urologist giving me information concerning my urine culture. I needed a different antibiotic, said Elaine, the one I was taking was not hitting the bugs running around down there, so Jim did the running instead, and ran down to the drug store (old name for new name of pharmacy) and got the new Rx (ummm, stands for prescription for some people who aren't in the know) filled with capsules containing the drug, a safe, non-narcotic - people just say "drug" not meaning narcotic, but it can be misleading sometimes, like I "do" take three narcotics which are drugs of this sense. I like to be careful how I speak of them, though, because of some people's reaction to them. You know, they think if you take them, you are an addict. Oh, well, back on track. Jim went to the pharmacy to get the new prescription filled in hopes that St. Ni it would be knocking out this infection very quickly. No harm done to me though when it would do its "knocking" only to those little bugs. By Saturday I could begin to tell the difference; today (Sunday) a good difference. I must have been better in some ways because three babies were up here sleeping with me during the night. Awwww...made me feel so nice, warm, and snugly. It should have. The bed was full to overflowing. The following sign seemed to be so appropriate for the occasion.

Last Week for Blood Donations at Manic Mommy's Blood Drive

Please give in honor of me, uh, you know...because you know me, because you like me (you do don't you?). There are sooo many in need of blood, especially after the ice storm there is a shortage, and you see how much is used just for one person, and each of us is sooo needy, at least we tend to think we are. At least you need me to spread the word of myasthenia gravis if for nothing else, and I think I'm good for more than that! So...let's go, hand in hand, you pretend I'm there with you.

You know, my little buddy Coleman who died last month, so many of his little friends need blood. DO give in his memory. No funny stuff there. Oh, how I fell in love with him. And I still do have his twin brother Caden. You'll continue to hear about him. He's never known life without Coleman. Can you imagine? Whenever asked his name, he says Caden-Coleman. I know, Jimbo, you always knew your brother, too, but these boys lived their whole lives as one. It was life, fate which threw them together as one when babies. He's doing pretty good, though, speaking of his brother that "got died." So long for now. Headin' over to Facebook to see some of my high school friends.

Friday, February 20, 2009

Back home for a while

We have spent virtually the last two weeks either in Jonesboro or Memphis at doctors' appointments or all day long in the hospital at One Day Surgery. I have been quite sick during this time, and not feeling up to updating here, even making a show in St. Bernard's emergency room last Wednesday night, and coming away with a shot of morphine. WoW is all I have to say about that! Too bad it cannot have been used throughout this ordeal I have been, and am still going through, BUT am thinking I'm on the way out of! It is going to take me a bit to recover, and catch up, but we have all of next week at home! HALLELUJAH !

We just got home late this afternoon, totally exhausted, after a bilateral venogram and follow-up with another of one of my very, very favorite doctors, Dr. Campbell who performed my back surgery. He removed the staples and other stuff, so I think I am free as a bird as far as my back is concerned. He is really a swell guy.

It is going to take me a while to get all caught up with the news from the last few weeks, so I'm asking your endulgence.

Here are a couple more pictures of the ice storm damage around our house.
Here is the whole bunch of them that Jim got with our cameras. Please to enjoy.

She was a beautiful old lady.

This us the holly tree just outside our front door.
It is so pretty.

Monday, February 16, 2009

Ice storm, changed appointments, IVIG, anything else?

You bet!

A couple of young ladies, Mama and her twin sister Aunt Naoma and their friends; one of those friends is my Aunt Florence, Uncle Herbert's wife, mother of Tommy and Shirley. Right now, I cannot remember her maiden name for anything. I know I will before long, though. It is the picture of Mama I was wanting to put up here more than anything else, Leola Gregory Holland.
NOTE: I just remembered her name, and it was von Kannel, Florence von Kannel.

Where was I? This was during the war and Mama and I were living in the house there behind them. I've emailed Aunt Naoma but she does not recall ever seeing this picture. Quite likely since it was Mama's picture for as long as I can remember. I had wanted to know where Daddy was, because I know at one point he was away in training before he was sent overseas. I'll try some more to see what all I can find out, but go on and post this picture now.

More about our experience with the ice storm, and all else in a bit, as we have more appointments coming up this week. They are about to take their toll on me. Just keep on, keep on, keep on, going, going, going. My body just seems to be wearing out in addition to the myasthenia. I cannot be healthy to gain any ground with it it seems, just to keep the status quo. In patient, out patient...which is best? One thing over in patient I didn't have to get up and get dressed each morning. ALL of it is tedious and stressful, but if I could have my nurses I have right now, and not have to come and go as I do, that would be good. I'm just so very tired. It just feels like I can't keep going on, that each foot is heavier than the other. Quiet an anomily for someone who doesn't walk isn't it? A few weeks ago some were pleased at the reports they were getting from me, and now, listen to me.

So much for now. Time to get a nap before getting ready for today's trip to Joesboro for the appointment with the surgeon who will do my port surgery.

Thursday, February 5, 2009

No go for the neurology appointment today - minor crisis instead

I just have the hardest time reconciling myself with this disease. First, it was coming to grips with it, and believing it truly was real that I do in fact have it, and it is going to hang around. It is not curable, and it seems all I do is spend time trying to find a combination of drugs that will render me symptom-free.

I remember when the bouncing ball came to television at the bottom of the screen. Oh, so very cute we thought. Yeah, okay for a ball, but whenever it is your body bouncing all over the place, not so fun. Right now, I'm further behind, rather moving ahead. Like look at my window seat I had special made. Before I got my hospital bed, and was sleeping on the couch, I was at least being able to get around the house in my wheel chair and do some decorating, fixing up, whatever you call it. I did flowers, sat before the window at the window seat, felt I had something to look forward to. Now? I'm stuck in this bed in a corner, the window far, far away with hope gradually drifting from the picture. If this were the only option, I could work with it, and handle it, but it is not the only option. When I got my power chair, it added so much to my life because I could flit from here to yon down here. No longer. I feel like a pig stuck in a mud puddle. Nah, I don't know if pigs get stuck in the mud, but just picturing it im my mind they *look* stuck. See, that is me. I *look* stuck, but I'm not really stuck because there is my saving grace, my chair, but we cannot connect.

There is also sooooo much more I can do for myself if I were free to get out of this bed. Mercy, I don't have to be perfect to get up and around here, and I surely do feel better otherwise than I have felt in a very long time. Is it the Imuran? Reducing the Prednisone? What? I haven't the faintest idea, but if I'm up and around, and MG throws me a curve, all I have to do is get in bed, take a nap. This is what I hear others doing, and they do not lie up in bed all day and night. Well, at least those who talk about it, and they are real people, in real places. Sure, I know I have a lot of other things, but my trusty ole chair compensates for much of that. People without their leg function, well, I just know they are more active than I am. But, there again, where am I going to go? Jim told Wanda that the mess here was my fault because of the need of my things to be right here, and I disagree with that. Difference of opinion. That's all.

I wish events would quit happening for us that try us, individually, and as a couple. It just taint fair!! We deserve some beautiful golden years without drama. Ah! I'm going off here for a while and look at pictures/graphics. *Need* to be working on pictures for here, but then again, m a y b e (say slowly) not. I'm off for a while.

Results from my picture scavenger hunt. Found two things. First is this lovely lady. And why might I choose her, you ask. The way she sits says, "I'm in charge, just the way Missie taught me to be." Yeppers. She has to be second only to our Missie, sought and trained by her, just like the hawks on the fence posts along I-55, East side, headed toward Memphis in the mornings. Look at the comparison in the painting versus the photo. Even while balanced on the back of my chair, chasing balloons given to me by Bankie, Missie still maintains her composure. She is not as "at ease" as the cat in the painting. Ever vigilant. That is her, and one very, smart cat. I pulled another photo, but may not have time to put it up here right now. I'll see. Now to the other one. **Okay, this is just me, but I couldn't stand it with the other picture of Missie, and I had to go get it and work it up to match the first one...or do you know which one was first? Sure you do. I told you didn't I? I'm the one who forgot. ;) In the second one, I had started packing my carpet bags,

felt this strange feeling come over me, and looked down. There I found Missie looking up at me. She knew. She knew every month when I got my carpetbags out that I was getting ready to go away for a while (5 days). After my first extended time away, she started pooping at the front door on the throw rug I had there. Once it went a couple of months of *both* of us being gone, and coming back together, she has now stopped. However, Jim had to take the rug up before she did it, unless it was coincidental on the timeline. Another thing, I do not use my carpetbags anymore for the trips over to Jonesboro. Again, coincidence, or is she as smart as we are thinking her to be. There are many, many other times that we look at each other in wonderment. I'll not spell them out because if I did you would think we were crazier than you already are thinking of us.

Yes, the hawks do sit on the fence posts on I-55. Yes, they are in the same stance as Missie sits 90% of the time. The stories, we make up to entertain ourselves., get tickled, and laugh at ourselves, a couple of old people traveling down the Interstate. Ummm, thinking...oh, yes, in charge. She thinks herself in charge in every kind of way of every kind of thing. However, twin sister Callie has started sleeping in her place with me, and now she does not have me whenever she ups and decides, a transition over the past year (I bottle-fed them as babies to keep them alive and am VERY attached to them whether they are to me or not). This has caused me a LOT of grief, and I mean teary grief, too. She didn't just up and walk away from me. Oh, well, it probably was not good for me to be so attached to a pet like that anyway. There I go, explaining it away.

These are just three pictures of kittens frolicking with birthday festivities that I found lifted my spirits, and were very cute. I loved the confetti flowing all around. I've always had a yen to just throw something up like that and let it go into the air wherever it pleased. Maybe I was wishing that about myself. Reckon?

Ragdoll and I have to say good-bye for now. Didja notice...the big ole white spaces and ads are gone? Now, if I could just get rid of that Adsense. Slowly but surely I'm going to get things situated now that my focus has changed.

Neurology appointment today for myasthenia after back surgery

Today is my appointment with Dr. Cauli, seeing him for the first time since my back surgery two weeks ago. All seems to be going well. Due to some colorless fluid showing up on the lower part of my shirts, and then Jim noticing a string on my back, I will be glad to see Cauli today. Hmmm, never having have any back surgery other than the kyphoplasty, I know nothing! Got it? Nothing! But I guess I'm a'learnin'! I've always taught mine learning through experience is one of the best ways. Doggonit, it stinks doesn't it, and...I guess it's going to keep on going, too. I keep on saying I'll keep on living as long as I am alive, sooooo, no matter how it is, let the teaching continue.

During the ice storm, I learned some pretty strong lengths to which I can survive - with someone else's help of course, but all those quilts and blankets for a week surely did get heavy by this past Tuesday! Wonder? Wonder if I was about to reach my limit of endurance of lying in one position for that long. How long? 6.9 days I don't want to exaggerate and say a full week, but it was from 2:23 to 6:50 short of a full week. I just know there are going to be so many stories with some fudge on them, and I do not want to be one of them, I'm diabetic. God knows me as a truthful person, and I do not want to start changing from that now.

Well, on a brighter note. Ha ha, only because it is bright white. Fooled you didn't I? I can barely see so am having to try to make up for it in other ways. I know, I know...I'm not THAT funny! Besides, I think I see a light not on, on my laptop keyboard and I should reboot. Rather than pull everything back up, I believe this is the time to post this *short* note to let you know my status this morning. I worked on ice storm pictures all night long, and jazzled one of them up for you this morning. Nah, just a simple frame, but I thought it looked nice. Heh, that's coming from a woman who can't see! Let me know if it is too bad. Truly, I did have to guess at parts of it as I was working on it.

Okay, it's good-bye, and off to get ready to go to Jonesboro to see Dr. Cauliflower, oops, no, Dr. Cauli! Better settle myself down before we get over there. And now, the big, big tree that once was.......... (be sure and click on the picture to see the details of the tree, and oh, while you're doing that, notice my beautiful frame! It's just a simple one, one I could do with my eyes closed or in the dark...joking, joking)

Tuesday, February 3, 2009

We have power once again

Power was restored this morning - Tuesday! It is amazing how much energy was needed to maintain the status quo.

Just wanted you to know. When the pain lessens, I'm energized and restored, I'll be back, up and running again. I'll start my blog in the meantime, so much to tell, so many notes, I don't know how many to get them all in. but I'll try!.

PRAY for all who are still without power.