Come along with me. Thanks to Myasthenia Gravis I do not walk. Heard of it? Not I until my ophthalmologist diagnosed me with it. After researching it, I found what I needed – remission is possible! I am going to live my days of IVIG treatments on my Road to Remission right here before the world, be they good days or bad, bright or sunny. The Myasthenic. The Ragdoll. Me. *MY* Myasthenia. Please join me.
. . . without any improvement physically.Thank goodness, spirits do not stay down for long. With the two of us, one is likely to bring us back up to higher ground. If not, I like for son or daughter to know so that we do not get encumbered in our blues. Tensions tighten quicken quickly for each of us, us being Jim and me, me not wanting to assume anything you know. It helped having son Jimbo coming with lunch the other day. Cheering Debbie after what she considered a bummer of a hair job helped me. Little things like that help. It helps make us, or at least me, and I know Jim's reactions, feel a part of the real world. It is not loneliness I am talking about. I have lots to do here in my bed with my computer, and electronic toys, especially after buying a couple of Dummies books recently (*never* thought *I* would buy one of *those* LOL). But, being included in the little things of their lives b r o a d e n s our lives . . . big OOPS . . . here I go again with the we, and not I, but in reality, I think it is proper to do that in this instance since our emotions are wrapped up and around Jim's impending surgery in two weeks, March 19th. An event affecting not only us, but Jimbo and Debbie as well. Unfortunately, they get the awesome task of worrying about mom and dad, along with their own emotions of coping with their dad's prostate cancer. It is all new to all of us. The more Jim and I can keep a positive and uplifting attitude, the better it will be, but . . . easier said than done. I grapple with depression over the MG anyway, and now here is my husband, and what can I do? What? Virtually nothing, and it bothers me. A lot. Forty-six years March 31st.
I have slept a lot today, purposely, knowing it is my best helper with the MG. I've tried so hard to remember my medicines, too, and have done a pretty good job. Still, the weakness persists. So much so that I could not make it to Memphis again today. It is not only this, but it is difficulty just getting to the bathroom (no fancy talk of the two o'clock waltzes right now).
What is this disease all about? How do you describe it to others so that they understand extreme exhaustion versus being tired. Is there a short way to describe that the nerves and the muscles do not *talk* to each other (ummm like some families ;), they do not connect, and pass on the necessary messages (ditto)? You'd think football players and enthusiasts would get it. The nerves pass the message, but the muscles can't catch the message. It is like they don't have the hands to catch the message with, the hands being the receptors needed by our muscles. Simple, and not scientific, but close.
I'm sooo thankful for Jim. It seems, and I believe, we each are giving 100% of ourselves to one another, each of us knowing we do not have 100% of ourselves to give. Make sense? In other words, all we have, we give it all to each other. I think our *most fun* times are times we spend watching our babies, the fur babies, usually the three younger ones because Precious is old and does not join them in their merriment, or wanting to get in our laps or on my bed. We get so tickled at the things they do, especially the twins. Do the twins know they are twins? They do so many things just alike, mannerisms and such. They are for sure different from Anna Kay, the Siamese. I've seen pictures of other Siamese, and they are lying or sitting in positions just like she does. So, is it just breed with the twins, or is it being of the same litter? There is a certain amount of copycating among them, definitely breed differences, and certainly individual personalities! Oh, are they ever individuals!
I had more to say, especially after putting Jim's picture in, and just sitting here looking and thinking. There is so much to think about these days. So much. There is good reason to get up out of this bed, and get about to others. My *loneliness* does not come from being by myself, rather from not being able to get up and out to where others are.
"If I can help somebody as I pass along, Then my living will not be in vain."
Toodles Striving for a world without Myasthenia Gravis
From growing up in the 40s and 50s on the banks of the Mississippi River in Helena-West Helena, Arkansas, I traveled the world in the 60s and 70s, courtesy of husband Jim’s Air Force career, then we retired back home in Arkansas. . . Blytheville, AFB. I have had a full life with three children, four grandchildren, four great-grandchildren with a fifth one due in August. Stick around. The road might get rocky at times, but then, that is LIFE, and Life Goes On, One Day at a time, One Step at a Time.
Myasthenia Gravis Foundation of Arkansas Mission Statement
MISSION STATEMENT
Of Myasthenia Gravis Foundation of America, Arkansas Chapter is the conquest of Myasthenia Gravis through programs of research, education, information, and patient servises to improve the lives of all people affected by Myasthenia Gravis.
"We will not concede until Myasthenia Gravis is only a memory".
Followers
Ashton Sears, a helper he will be.
Their shirts say "Brothers for Life"
It's 4 the Kids (Shown Julian Avery)
Kennedy Garcia - Downs syndrome and a leukemia survivor! Yay Kennedy, you GO girl!
No comments:
Post a Comment