Thursday, February 7, 2008

Getting ready to grace the doors of St. Francis

Is every month like this? Let's see . . . the last time St. Francis was so lucky to have me was January 14th, then I came home on the 22nd. Now, it is time to go back? Why, just how many *every four weeks* are there each month, anyway? I'm scratching my head . . . NO, not because it itches! I'm thinking. Uh oh, bad sign. It's just that this week out of the month seems to come around so quickly. Does my Missie Nicole sense I am getting ready to leave again? She has become more attentive the last few days. Right now she is lying on the rug beside my bed. She kept vigilant as long as she could, but now that pretty little head of hers is flat on the floor as she snoozes, resting next to my purse/bag beside my bed. My purses or bags are often her choices of resting places. It amazes me how she knows some things are even mine. Take my carpet bags for example. Guess they have the smell of my clothing that has been in them, but she loves to lie on them. How does she know it is a purse or bag, something that means "go." Jim and I think my going away each month bothers her. She is very attuned to my bad periods, especially the pain that brings the tears, and stays even closer, usually beside me on the bed. The others do not do this. Precious walked by just now. That disturbed her napping. With lowered eyebrows, like "What are you doing over here?" she watched to see what Precious with "What are you up to?" eyes (Precious is twelve; Missie five ;). She is most attentive to anything she thinks pertains to me, anything that might even come near to being close to me - so she thinks! See those tuned-in ears? Jealous? Or what? Once she was satisfied Precious was going to the food and water dishes, she turned her attention back to me. I took pictures then. ;-)

Now let me turn my attention back to my business at hand. . . preparing myself for my trip to the hospital next week. ::sigh::
I get all snuggled in here at home, and before you know it, it is time to go again making it feel like . . . well, I don't know exactly how to explain it, but like maybe there are double the weeks in a month. Can't slow this "Road to Remission" down though, not just yet. That *lump* is in my stomach already. I could name it gastroparesis, but it's with a tightness more associated whenever I think of packing up and leaving Monday morning. I'm sure some of it is the bother of the physical part of it, the packing everything and getting out the front door as with a trip of any kind, minimum of five days. Just that in and of itself is hard enough, but though I can make light of the different aspects of the trip, inside I am really crying "Please, let me stay home." But Medicare doesn't see it that way, and wants to spend the extra money, wants to put me through the extra stress, so what am I to do? Which/what of my inner being am I to choose? What am I to gain from my choice? I have found my countenance to become a reflection that returns multifold; why who wants to be around a grouse?

And, I'm always bringing up songs. How about "Let a Smile be your Umbrella"? It is most worthy, and I don't think Pollyanish as long as you've got both your feet on the ground. No, no. No pun intended here. The soles of my shoes are not even dirty. LOL I believe this is what Dr. Ali wanted to be sure of last month when he asked if I'd mind talking to the hospital psychiatrist,
making sure both my feet were firmly planted (I have an area that I have not reconcilled yet :( ) Of course I didn't mind. I've been wanting to see my own psychologist; just haven't made the appointment with all these other ones going on. I passed the test, and I believe I was being as honest with him as I could be. Subconsciously? Who knows? I'm not happy-go-lucky all the time. Dr. Ali has seen me cry, too. Several times. I can have those tears in a moment (they're that close and I'm an easy crier), but I like to be able to hold them until it is a personal moment if possible, but with me, that certainly is not possible, and I've learned to just let them trickle down if they overflow, and keep on going about my business. And dear Liesl, what would I do without you? Knowing all you guys are going to be there makes the *going back* easier to do, going to my home away from home on the third floor. I'd like to identify some of those *tummy feelings* as an excitement feeling at seeing the nursing staff, both in the ER and 3rd floor, for I'm sure I'll be spending Monday night in the Admin/Holding area (no online while there f. That is just about a given anymore. So, see . . . I've got the *nervous* tummy feelings, the *I don't want to go feelings*, the almost gonna cry feelings . . . now how do I behave with all of this? Grumpy grouch grouse? Who benefits from that? Not me. Jim has cancer, and is having robotic prostatectomy surgery March 19th. I'm having a biopsy to rule out pemphigus. What is the paradigm in our home? First of all, we have four cats . . . shh, they think they are people. Maybe Love and Laughter would be the simplest description, and FUN! I cannot describe the fun we have. It makes me smile while I am typing this, just thinking about some of the silly things we do and say. When a bed is your total environment, you gotta do something. Oh, my. If he were not asleep, I'd be truly laughing out loud at some of my thoughts, so here, this is the most I can give right now . . . LOL

The MG kept me from smiling for so long, and I didn't even know it (grouch did fit as in picture :-( ), and I'm making up for all those frozen faces. It is SO wonderful to feel my face move now, expressing my inner feelings. This is just one of the results from the IVIg treatments. I do get facial cramps all of a sudden sometimes . . . say like just a few moments ago, that also pull my head backwards at the same time usually. But, they are short lived, and sometimes a bit painful if the cramp is too strong.

I am in charge of my hospital room. It is my comfort zone. Last month some nursing staff barged in, didn't say didly squat, though it was first thing in the morning, about 7:15, woke me with their testing, abrubtly turned knocked things over, walked out of the room. . . still not a word, except from me! She returned after the *partner* she was with who was in the hall said something to her, and picked up whatever it was she knocked over, and righted it, and muttered that the bed covers were on the floor, in the way. I did not complain, but in conversation said something to my nurse. A *we're not going to put up with that kind of attitude on this floor* type of nurse, and left to go take care of the situation. Those two were never in my room again that day. Later in my stay, she came in and was very polite. I think sometimes they forget I am a patient, too. But, there are some basic rules of politeness for anyone, well, everyone really. I had to explain to some of the aides what my disease was all about because "you don't look sick." This is a *real* problem for myasthenics, especially since we can be okay one hour, and way down the next. Jim has been able to get a really good look at it since he has been with me 24/7. He is often a good adviser on what I should and shouldn't do, when I should rest, and sometimes what I should eat, or maybe I should say try to get me to eat - this is a real trial, testy time here. He is learning to pick out my clothes. BIG step for us. Enough for a whole post one day. *s* His understanding of the disease has been making it much more of a team effort now. While I was upright the other day, and able to stand to hug him, I told him "I sure do love us. I really do love our team." And I do. Today I told him I love him more and more each day.

But . . . I have to go.

Striving for a world without Myasthena Gravis


MyChronicLife said...

I too have MG. I'm blessed to have had a thymectomy within 6 months of my diagnosis and am on Cellcept now. The MG is pretty much under control. I've been lurking a bit on your blog and wanted to say that yes there is hope for remission.

My neuro is quite funny. He doesn't like to use the "r" word, so it's "under control". He's right in a way as I do have symptoms from time to time. Nothing like when I was first diagnosed though.

Many blessings to you!

My Chronic Life

ragdoll said...

Thank you for visiting, and speaking out now. It really is encouraging to meet other myasthenics who have been successful in remission or control.

Thank you for your word of hope. That has become my word since I began the IVIg treatments.

I am happy for your success in getting your MG under control.

Ragdoll Billie