Tuesday, January 27, 2009

Nothing is wrong with my keyboard after all . . .

. . . it is all *MY* Myasthenia Gravis. I just did some testing, and found out that my arms/hands are so weak that I cannot press with my left hand, and with the way I need to press with my index finger of my right hand. That is welcome news because I do not want anything to be wrong with my computer. THAT is a lot of money I do not want to use right now. It is also something I know will get better with a bit of time, sleep, and meds. Already, I'm still able to be awake more today, and the Mestinon is more effective as I am reducing the dosage back down. Confidence. That gives me more confidence in my recovery.

The surgical site is a bit more tender today sans dressing, but I know this is only temporary once I get used to it. Good news is alway good to get isn't it? Have a good day!

Monday, January 26, 2009

Third day home after surgery

All I can say is I am glad I am I am inside right now with all the blustery weather surrounding us. We are due some freezing rain later tonight. Brrrrrr. Things are still going well with me post-operatively. I definitely can move about much better. My myasthenia flared considerably, but I feel it is coming back down to normal - hopefully. I am wearing an eye patch for the first time in a looong time. Not 100% of the time, but it helps.

This was my third day at home, and the day I was due to remove the outside bandage. No problem there. It didn't even hurt. ;-) So, everything seems to be coming along very nicely I think. I'm able to move better than I have in so long, and maybe that is going to even increase. Wouldn't that be nice if it even increases. Hopefully, I'll feel like talking more today, and will not need my myasthenia restorative sleep.


Saturday, January 24, 2009

Myasthenia gravis and back surgery report

First and foremost, I had and have a wonderful relationship with my neurosurgeon, was comfortable and trusting of my anesthesiologist (very important for the myasthenic), stayed overnight in ICU, and ta dah here I am two days later recovering very, very well. It was my breathing that I was so concerned about since I had had problems after my kyphoplasty, and the myasthenia is much worse today than it was then.

So, I was nervous. I remember waking, still in surgery, and they said, "Here she comes," then they started taking things off my face, and saying she's going to room such and such, when I knew I was supposed to be going home. Ummmm. All they told me was that I just acted up a little, and were keeping me, and watching me overnight. That was the first operative memory that I was taking into surgery with this one. Once I talked to the anesthesiologist, I felt much better. Still, I was just glad when I didn't know anything that was going on around me, when I didn't have to think about any of it any more. Anyway, except for some after-flair of the myasthenia, I think I've done very well.

Okay. The spinal surgery is done and over, over and done with . . . well, not totally. Due to the condition of my spine, he was not able to remove all the calcification he found there at T2-T3. He spent some time Friday morning explaining it all to me, plus he's going to see that I get a copy of the op-report. Right now, I am just too tired to recount the who, how, why, and wherefores, so I'm just going to post the pictures Jim took as they were filling my veins with IV lines since my portacath continues to malfuction until Dr. Cook takes a look at things.

Computer ~ better than an anti-anxiety pill

Julia comes to perform her skill with the needle poke of the vein. Later, Mary has to add a line for potassium. Ugh. Ever had potassium flowing through your veins? One of the most unpleasant things in the world, spoken in the plainest of English for I can think of no other words to describe how it feels. Horrible, horrendous, yeck, anything!.... Ragdoll's thesaurus....heheh

Enter Melissa, a cutie the One Day Surgery staff urges me to not encourage, but how can I resist her when she treats me so special. How special? Well, she treats me like a grandmother, bringing me little tidbits, gifts, etc. She brought me a goody bag. Awww, Melissa, socks that say "Cutie," some shine lipstick, a notepad *just the right size!*, much needed body lotion (how did you know this ole grandma needed THAT?), a picture frame that I'm now going to decide who I'm going to put in there and WHERE Poppa's going to put it.... that's just a bit of the goodies. Think I ought to put the cutie socks on to make me feel lookig ooooh so cute at 66, lotion to feel so soft and smell so sweet, and then top it off with the shiniest of lips. Jonesboro won't know what hit it whenever we girls hit Turtle Creek Mall once I'm recovered from everything. Aha.... shirts that say One Day Surgery. I can do that ya know.

What in the world is this girl up to now?

Melissa, now doesn't she look sassy.... naw, not Melissa. Those other nurses just don't know her like I do. Add the Bobsy twins and who else, and we'll have a blast!

Melissa, down to serious business as a nurse

Jamie ICU, a real sweet, and VERY helpful ICU nurse. I didn't get my other ICU nurses' pictures, Linda and Marcia. Linda and I talked a lot about our grandchildren, talking about our rings depicting our children. Marcia and I had some like meds and diseases of which it comforted her, and we're going to *try* to get back in touch later as I'm coming to the hospital each month.

All the St. Bernard's staff made my surgical experience more pleasant than I ever could have imagined considering how nervous I was to begin it.

Thank you St. Bernard's. I must go.

However, as I go, let me show you the best of all, for supper tonight.......

Monday, January 19, 2009

Pre-Inauguration Day

I am still spending recoup time in bed, watching all the activities on television. It seems to me that I am doing better this time than before.

Matthew, the five year old great-grandson, lost his first tooth, and I am going to make him a card and send to him. I had told Jennifer to text me to remind me, and I just got that text, so I must get away from here and design that card. Now THAT will be FUN, getting back into that once again. I have missed doing that.

See you later. Have a very nice day.

Saturday, January 17, 2009

Let a smile be your umbrella!

Home, sweet home. This month's treatment is finished,
It was a good week with no serious side effects until Thursday,
but they have shown themselves vividly since then.
I have slept most of the time since I have been home,
and feel I must continue to do so for me to recover adequately.
Things are just going too well for me to rush it along.
I will make more comments on Twitter about my progress.
However, as my title says, "Let a smile be your umbrella,"
let that be your mantra, also.
Come back, view my card.
Now, I'm off again to watch the Train to Washington.
I've lost one of my hearing aids and cannot hear,
but at least I can watch the pictures and text on CNN.
I'll be back around later.

Saturday, January 10, 2009

IVIG next week and I'm apprehensive

Jim has been washing and getting clothes all ready to go tomorrow. Me? My nerves are on edge big time and my not much use to anyone. I do have to gather up my bed into the suitcase and get it ready sometime. Daughter Debbie will be here tomorrow to help with a few important things like giving Dad a haircut, and helping us with our new phones. If I could read I could do most of it, but I have MG eyes right now, and don't know when they will clear up. She thought it was cool that Mom and Dad got BBs.

I had a lemon of a phone, and went to get something different. Radio Shack has always been good to me, all the way back to the Tandy 1000 days of the mid 1980s when I bought my first computer from them. I just feel comfortable with them. I started browsing the Sprint phones, and much to my wandering eye should appear but what I considered quite a deal on the BlackBerry winter (Go away, go away blackberry winter.... song of my day). It was within the range I could deal with, and after looking all around, feeling this fit the desires of my heart without breaking my bank, it was my unanimous decision, and up to the counter I rolled all set to upgrade my lemon of a phone I had.

Finished, we went down to the Food Court to look over my new *baby*, and as gadgets swirlled round in my head, I thought it was time I did something for Jim, he is always thinking of and doing for me, my grandmother's ring the latest. He has the biggest heart for me. It just took me a little while to understand him and his ways, and once I did that, I found a most giving man. Actually, he might be a giveing man to a fault, especially to the woman he loves. He just looks for ways to show that; his way, not someone else's way.

Ayway, I saw it was easily within my Social Security savings' realm to add him to the plan, too, so back to Radio Shack I proceeded. I needed my purse so back to the Food Court I had to ride, and make up a nice reason - NO lie - for needing it back at the store. It is nice that I have built up a reputation for spendig money on electronics, say like a new computer with every new operating system, one of each here at the house. No slaggard am I!

Before the sales assistant was completed upgrading his phone, who should appeard but you.know.who! YIKES! When he asked what I was buying, I just told him, "You know me whenever I get a little money in my pocket, and then get around electronics." There was enough truth to that that he took it hook, line and sinker.

Since I went for a couple of years of not being to write to sign my name, I was having trouble doing that, so I asked him to come around and complete the electronic signature for me. I stayed there at the counter with the girl, her being in on my little deceitfulness (it a sweet one, though, don't you think?) and he just roamed aroud the store, wearing his phone of a couple of years. I fully believed he had figured out what I was doing. After all, she had the box to his out on the counter. All finished, his new phone was in my purse, the one on his belt? Dead! Once we got out of the store, I gave him his new phone, and told him he needed to take his old one from his belt now because it no longer worked. Come to find out, he was totally, and all relative words, surprised, and began his "You shouldn't" speech, but did not get very far. He is about used to hearing us give that lecture, that he stops now, and just says, "Thank you," and that is what he did. He was totally, genuinely, happily, and anything else surprised. No, he had not figured out what I was doing. He thought I had found something to go along with my phone, and was not even paying any attention to the details when I asked him to help me finish up. Sitting in my wheel chair, it is difficult for me to see all that's going on up on the counter, but it would all would have been visible to him. He. never. looked! Nosey me would have scouted everything, especially the box she had in her hand. Wouldn't have said anything, but ohhh my mind would have been going round and round with ideas putting 2+2 and hoping I was coming up with 4, and it was a phone for me.

We didn't do any more of the shopping we planned on doing because we were too excited to go eat, and check out our phones. Well, let me clarify that. It twere *I* Ragdoll Billie who was anxious to check out the phone. I had been wanting one since I was aware they were on the market. Jimbo has had one for ummm, two years? I think that's right. Whatever it is, it is longer than I. With all of our medical and other expenses, I've never given it a second thought of getting one anytime soon. There have just been too many other things that needed to come first. But THEN..... my wandering eyes beheld the BB at such an affordable price, and I went straight to work making it work for me. Ha ha, ho o, weeeee!

I have found that I *pay* myself for my nerves, stress, side effects, pain & suffering and all other manner of evils by getting me my *little* techno gadgets. Forget the clothing and stuff. Lying in bed, and sittig in the wheel chair, clothing looses its appeal somewhat, not entirely as I'm learning how to wear it differently, and Georga Mae at Dillard's is helping me tremendously. *big smile* I'll be washing up, and making pretty after I get this published. That will make me feel a good bit better, and I can only get that done by getting myself out of pain. Oooooh, let's hope that back surgery that I'll talk about in a later post is going to help lessen the pain.

About this IVIG . . . I'm going to start it at 150, and not go very high to see if I can control the headaches better this time. I think that is the rate. When I finish here, I'm going to check my notebook and see exactly what I've been running it, and know I've been doing 180 the last two times. It's nice to get through early, but not with those headaches I had, IF that was the cause of them. Schalawags. That is what they were. Bad, bad, bad. I want to try to control them, and I am going to set my notebook ahead of time.

Well, there wasn't much about the upcoming treatment. I do want to emphasize the virtural blood drive Manic is running. Blood donation is so necessary. A minimum of 1000 donors per treatment. I'm still not sure if that is per day or the total five days. That needs to be clarified.

So long, farewell for a while. Hope for a working hot spot next week!

Remembering Coleman right now

It is time for Coleman Larson's life to be remembered right now in Our Saviour’s Lutheran Church in Callender, Iowa. I had started a post of "My heart remembers" but could not complete it, for this whole week has been all scrambled for me between my personal life, and my dearest childhood cancer friend and family, Coleman and Team Larson.

I found it interesting that I could not access my internet until ten minutes ago. Ummm, can I say I don't believe in things like that? I did everything I know, and I am pretty tech savvy, and nothing, I mean absolutely nothing would work. I didn't fight against it, and went to play some Mah Jong. When I am doing that, I cannot see the rest of my computer, so at the end of a game, I came to check on my internet, having NO idea of the time, and not uptight about Coleman and my Robert memories.

Surprise! I found everything perfectly normal! It was loading pages so smoothly, and here I am thinking and writing of Coleman right while they are in Callender celebrating his short, but long impressionable life. But when I think of Coleman there, pictuing the service in my mind, I see Robert and his service, his casket at the funeral home for visitation. His service was at the high school gymnasium for several reasons. It's been a long time since I have remembered that day, and never at night in my sleep, in my dreams. But flashes last night. Claudia was playing 'His Eye is on the Sparrow." Yes, and I know He watches me. The song still brings the tears. For twenty-four years He's been watching me. He will still be watching Peggy, Scott, and Caden twenty-four years from now, just as He is today. They each will have their own needs, but He will know them, and will provide for them. Just as this earthly mom rejoices to see that her children have survived these years, so does our Heavenly Father rejoice at our survival, and at times He probably laughed and said, "See, there, I told you so, you just needed to wait on Me." He knew. He knew all along. It was just our wanting to rush it sometimes. But here we are today. Still surviving, and the "kids" surviving much better than then. Praise God.

This road has been sooo rough and rocky, and at times I was not sure I was going to make it, at times Jim and I were not going to make it, but . . . here we are today, and we are still making it, minus one child, and with our family growing by what is perceived the wrong, the hard way, eight grands and great-grands with another great on the way. Jim is 69, I'm 66. He's doling out the advice, me the hugs, things needing to be heard and felt. He is a cancer survivor from last year. I have a rare, incurable disease that requires him to care for me, the house, and himself 24 hours a day. There is NOTHING to big for God! It only "feels" like it sometimes, and that sometimes might be once a week, but that's okay, for God is there every moment of every week. Praise Him!

I have some more about last night, but I'm not sure I am ready to write about it just yet. Maybe I need a soft and silky friend to join me, but I have some soft and silky kitty cats here, one of whom is in my lap right now. I think I wil close for now. I've been writing for an hour. I feel good, and better about Coleman and Robert, readhing towards best. I might as well. There is nothing I can or could do about either of them. You think Robert might be sitting, talking to his grandparents about all of this, just maybe? I will be glad when Peggy, Scott, and Caden are able to have Coleman imaginations, which it wouldn't surprise me if they had not already begun knowing Peggy.

I still have not told about my surgery plans but there is plenty of time for that. God has laid this on my heart.

This is Coleman

This baby begins his 2½ year journey.
Bunny Foo Foo begins the journey along with Coleman.
This picture really gets to me.
Post-opRelay for Life "Brothers for Life"Twirling Bunny Foo Foo's ribbonMake A Wish Foundation
Peggy is a top-notch photographer.
Her videos excel!
See Coleman's CarePage here
Peggy's videos at YouTube

Wednesday, January 7, 2009

A warrior gets his wings

After a 2 1/2 year battle, exactly half his life, with medulloblastoma brain cancer, enduring every kind of treatment available, in this hospital, that hospital . . . this five year old cancer warrior has received his wings. The angels in Heaven are rejoicing over the arrival of this little child of God. We always feel like it is too soon whenever a child dies, for our understanding is limited to our knowledge here on earth. Every child is special, but there was just something about Coleman. He was just a bit of Heaven to our hearts. I know he carved out a place in my heart.

For me I went for years thinking and saying that when I got to Heaven that was the first thing I wanted to ask God, "Why did Robert have to go when he was only sixteen years old?" Oh, how much I have learned. God had HIS plan all laid out for him. His time here was over; He had other things in store for him; all I had to do was just rest and relax in His arms; He would take care of me for, "Beneath His wings of Love abide, He will take care of me." He is there for Peggy, and the rest of the family today.

One day I realized that whenever I got to Heaven it would not matter to me then, for all would be perfect. Our bodies would be changed in an instant as well as those who had gone before us. All suffering would have ceased. Praise God! Our bodies as new. I would be rejoicing at seeing my son once again. The whys and wherefores that have plagued me here on earth would not matter to me any more. The rest of my family, too, would be there, and oh, what a rejoicing there would be. With my earthly vision I can just picture our true happiness, dancing, missing those who haven't come yet, anxious for their arrival, whenever that might be, and this gives me an idea of a day in Eternal Life, for what a day it will be, for there amongst us all will be God in all His Glory! Coleman is with God right now, playing in God's playground. I can just see that little mischievious grin of his.

No tears, for these thoughts bring a smile to my face. There is a song, "No tears in Heaven" and one line says, "No tears well we know." I believe it. Yes, I believe it!

I want to fight for a cure for childhood cancer more than ever now. I know Coleman was a gift to Peggy and Scott, that they felt honored to be chosen as his parents, and wonderful parents they have been, but that does not mean we sit back and let this beast beat upon our children. I have my four great-grandchildren with another one on the way, and I never want to see or know of a single day that one of them would have to go through the horrors of cancer treatment. How these little ones endure it is beyond me, and Coleman is one who underwent it all. Bless his heart, he suffers no more!

From Peggy:
I believe God’s will was done through Coleman. I know it.

For those inquiring:
We will celebrate Coleman’s life on Saturday, Jan. 10th at 10:30 a.m. at Our Saviour’s Lutheran Church in Callender. Visitation will also be at the church on Friday the 9th after 4:00p.m.

Also for those inquiring- Instead of flowers, we’d love donations in Coleman's memory made to either:
The Hospice House of Fort Dodge, Iowa
The Ronald McDonald House of Iowa City
or curesearch.org


See you later Coleman