Monday, March 10, 2008

What happened to Sunday?

So very sorry. Sunday and Saturday got mixed in together on Saturday (do not miss it before this one, A sunshine day all around) because of faulty equipment. I had to do a restore, and it put some of my software back dated, and I had to make allowances with another version. Then, as stated in the lower part of Saturday's post, I slept a lot. Very true, and am a better person for it. Lesse . . . that puts us up to the 10th, just one week before going back to the hospital, so we will be beginning to pack today since we both will be leaving next Monday, the 17th for an undetermined time. I also have to get my graphics' software back up to date, and Firefox as well. That means some searching time today, so do not know how much writing time I will have today. My clock on my computer says it is Monday, so I am going to believe it. Lying in bed all the time, if it were not for the computer, I'd have a hard time know what day it was. I know it is 6:00 a.m. and I am hungry. Baby cakes is sleeping soundly, so how 'bout some Keeblers Graham Crackers and a Sprite. That is something else I never thought I'd do . . . drink unrefrigerated soft drinks. Once the fizz is down a bit, they are not too bad. Most anything is okay when you are thirsty enough. Not a preference, though.

I might be dealing more with emotions this coming week as Jim and I embark on a new journey with the effects of his robotic prostate surgery on the horizon. We come from two different directions. I want and need to talk about what is coming up for me once my IVIG treatment is over, and I am discharged. It sounds so simple to say I am going to Debbie and Mark's house. For Jim, the surgery is so scary. Oh, how do I understand that feeling! One day, back early after the diagnosis, he jokingly said "Why don't you do this for me because you've done it before (meaning the surgery bit)," and he is right, I have multiple times. He is also right, that I would rather it be me going into surgery on the 19th than it be him. (At least he'd be there to hold my hand, and give me a kiss) Guess I know the ropes you might say, from one day surgeries, to the major ones where they took my ureters out and reimplanted them in my bladder, and I hemorrhaged afterward. That one left a bad taste in my mouth you might say, and I have had more fear of surgery ever since, especially since the back surgery, and I had the breathing difficulty due to the Myasthenia Gravis.

What is it? My age or what? Surgery, being uprooted, or anything like that just gets to me nowadays. I've written multiple times in my blog about getting that nervous stomach when it is time to go back to the hospital, even though it is not a bad experience, and everyone is so nice to me, like a second family. I just don't have that *jump around-ism* like I used to have. Is it because I've gotten so comfy in my little *cove* in the downstairs in my hospital bed, after being so miserable on the sofa for so long? No, things are not perfect, and not the way I'd like, but it sure is better, and we at least have a little visiting area here now. Even Jimbo has a place big enough his big lumbering frame. He is welcome for my rocker any time he wants to come by, lunch in hand or not, especially now that I can hear, and join into the conversation. Of course, he is going to be busy with Dad in the insuing days. There it is again. Those upcoming days. Wish I could take my bed down to Debbie's. ;)

Since Debbie is going to be working during the day, and I will be alone at her house, I do not see why I could not be alone here at my house in my own bed. *No one* has any idea how it feels to be in a bed of my own after three years on the couch 24/7. No, nearly all of those days was spent in the wheel chair night and day - actually the couch, chair, then the couch again.. When I am in the chair now, I do not know how I stood it. Yes, I do. That is how sick I was. Too sick to even feel the discomfort. Whenever I get tired of being in this bed, I need to remember what it was like for that time spent sleeping in the wheel chair. Ugh! Then there was that time sleeping on the couch last year. Now Jim is sleeping over there because he is afraid for me sleeping down here by myself. Guess we will face that risk once this all begins, though. I am sure I cannot sleep in my wheel chair, but can give Debbie's recliner a whirl. Here I am, full circle, back to not wanting to leave my bed. I will also be dealing with the after effects of the IVIG, too, having no idea what that will be this go round. Scary. Scary----->Stress Stress of the unknown. No one but Jim knows what a bad MG day or night is like. He doesn't leave me but for very short errands, and now I am to be alone. Scary. He knows the sights and sounds to watch for. Scary. We are so enmeshed. Now we're to be ripped aparted by some stupid cells! Damn those cells! They and everything they have wroght has me crying, flooding tears galore. I have no idea how to cope with this. Not the first idea.

Who does it affect as to how I cope with everything? Looks like to me, it would affect everyone. Just not sure how I will be able to go to the bathroom at Debbie's. It is under the stairway, and smalle. That has been on my mind a lot, in addition to having to give up the bed. Huh! That is all there is to my life. Lying in bed, and getting up to go to the bathroom. *After* being here, of course. Well, and eating graham crackers, which I do whenever I am thinking. ;). It will also mean no Jim's Easy Soup - the best in the world.!! My photographer, too. Oh, my gosh, how I am going to miss him so!!! He is my life, my ALL!!!! It took three years apart to shake all the kids out of our hair, and get things all dusted off, and straightened out for us to find that relationship we started out with back in 1962, but man when we did - Whoopie! It has been nothing but growing together as one every since. First over some bumps, but now, we can even disagree, and still know and feel the love fore each other stronger than when we were those carefree young adults of nearly fifty (50) years ago! It is *NOTHING* like our early love. Nothing at all. Oh, right now it is *totally* different from anything we've ever, ever encountered, even after Robert's death, and ALL that happened then. We were both coping with the same thing, the loss of a child. But this is different. He has cancer. No, I cannot phathom, not at all what he has running through his mind in the slightest. I would be petrified, just as I told Dr. Franklin that day during my appointment, and I feel that almost as strongly as if it were me. Dr. Franklin said it surprised him because the *cancer* could be cut away and treated, but all that I have is so much more complex, and treatment is not assured (this is more than the MG he is speaking of, but all the diseases I have). This is the main reason for the thougths of going to the Mayo Clinic, but money is a big factor determinig that. I dunno. Anyway, talking this through has helped staunch the flow a bit. The blog is nice becuase you can just talk and talk, whether it makes sense or not, and no one interrupts you. I'd advise anyone who needs to just talk, to start a blog, and make it private, by invitation only, unlike mine.;) It is cathartic.

So now, you have a couple of weeks to listen to me work at dealing with my feelings I've expressed I really would appreciate some comments if you have anything at all. In the past, Jim and I have dealt with everything with just the two of us, and generally in agreement, going in the same direction. Not now. There is no way I could ever feel his feelings, even remotely. There is no way he could understand my dilema of leaving my *cove* with my *less than a year old bed* seen here by Jim making it up for the very first time of very many, even thanks to the washable pads we have accumulated! hehe Something else I never though I would need, too. Oh, it is sooo wonderful to grow older with multiple diseases, that affect your whole body. Weeeee! This is one of the reasons I regret not being able to return the expression of my true love to him. He has done, and given SO much for me. Not so much physcial, but just being there when needed at any time night or day, never a complaint, but I know not the best time. I know because I remeber those times as a mother. But I also remeber with the babies, and little children, I didn't mind it because of the love I had for them, it just came with the package deal. He tries to comfort me with the same reasoning, but mamas are not used to be so totally waited upon, especially in *some* ways. It even brings tears to my eyes to even think of needing help in the personal ways. We are even going to have to do a bath before the 17th, since Home Health Professionals gave my up based upon erroneous information, and I've not had a bath in so long now. It is just so hard for Jim and me to do ourselves. We can do it, though. Another of those, "It you and me, we can do it," things. Another of those things we tackle head on, and get it done, know how, or like it. In one way, I kinda think I'd rather have him do it than anyone else, especially if they are uncomfortable, or do not know how to do it. Went through some of that at the hospital.

Hospital. Home. My only two comfort zones. Please stick with me this next week as I work on dealing with my emotions, and **please** make comments if you have anything for me, MG related, or anyting else. Basically I'm scared. I've got the IVIG coming up, and there is no way of knowing what the after effects are going to be like, and will not be coming home from it to my own home and bed like I normally do where I often sleep for a few days after one, or am in pretty significant pain. NOT the last two, but that has not happened enought yet for us to hang our hats on those results just yet. Those are still in the experimental stage. Dr. Ali said they would work with me however they needed to. That helps! haha Think I'll just tell them to knock me out until Christen get home from school. That is something to consider, too. Her coming in from school unless she is tied up with a practice of some sort, our all-rounded girl. ;) She is looking forward to my being down there. I need to add that to the pot of consideration. We all have a MySpace, and she can help me bring mine up-to-date. Seems Ashley is working on hers over in Cave City. ;)

So, with all this mumble jumble I leave you till later. Later meaning I do not know when, but know I am still doing better these days, on an upward swing, which is much appreciated. I've had part of my morning Mestinon. Other meds will come after Jim doles them out for me later. Funny, but it feels like the morning is pushing it a bit getting started today. Time change!

Granddaddy & Ashton
The perfect Pair

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

Striving for a world without Myasthenia Gravis

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