Wednesday, February 20, 2008

Manic's blood drive is a success!

Manic Mom's blood drive is winding down to a close tonight.

It has been an exuberant time for me since I found out about it. I found out about Manic through Patricia Wood, author of Lottery (I'm still trying to get an autographed book ;). She followed me from Manic's blog, then she contacted me through my blog because her muse is a cat like Anna Kay. Then I went and checked out Manic's blog. Saw her blood drive in progress. Sent her an email saying "thanks" for the blood since I am a recipient each month of pooled blood of more than 1000 donors. It was just one of those "one thing led to another" type situations.

While Manic, and the other moms were excited about something from a perspective different from my vision, it is all still part of the same ball. It goes round and round filling needs everywhere. I can just see it now . . . that big ball rolls along picking up the donated blood, carrying it hither and yon, combining it until there is enough to meet the demands for the end product, when it will then start rolling along once more, now the finished pooled blood product containing all of those good, healthy immunoglobulins to be given to people like me, to replace our decreased or abolished antibody production capabilities, and help our bodies to keep it from fighting against itself (autoimmune diseases) for a while; this is not a permanent solution, more like putting on a band-aid for a few weeks or until control is reached at some point, which is what I am reaching for - control, remission, absolution of symptoms.

Something just struck me. For women. Those of us with straight hair who wish it to be curly, we get permanent waves. We go to the beauty salon, get the permanent. At first our hair is all curly. Gradually the curls begin to relax or loosen, until we virtually have no more of the permanent wave left in our hair, and it is straight once more, and time to get another permanent, so back we go a new perm. The hair is still good. It just needs a boost. The permanents do not change the status of the straight hair. The permanent is not going to change it from straight to curly forever. The IVIG is not going to make any permanent changes to our bodies. While all those immunoglobulins are still active they are going to help, but they are not indefinite. When that bunch are done in, I have to go back and get some more. At the same time the doctors are working with other drugs that *do* work to help our immunocompromised bodies. Another time I will talk about drugs that are associated with MG, and how they work.

Stop by Manic Mom's and tell her thank you, and how much you appreciate her for this great effort. It was something she did simply out of the goodness, and gentleness of her heart (yes, it says *Manic* and well, maybe she's, uh . . . alive with energy, but *that* is great! ;). She is a funny, loving, caring person, and has already stated this is the "1st Annual . . . . " so you can look forward to this again next year. Me? I'm ready to go again! Watch out! LOL

I have found, through this, that people are ready to do something good, and are willing to help each other, they just do not know the means of going about doing it.
Yes, we all do it to a degree within our private lives with those whom we come in contact, but rarely do we have the opportunity to meet up with our neighbor across our state, country, or "across the big pond" as we like to refer to the Atlantic Ocean. There are enough people with computers today so that "Getting to know you over there," is becoming no harder or more unusual than getting to know someone on the other side of the town where you live. But, there needs to be someone to pull it altogether. It doesn't just happen.

We often ask "Why" whenever our lives are struck with diseases that impact our lives such as Myasthenia Gravis does. It has turned most areas of my life around 180 degrees, and that has been the biggest "pill for me to swallow." The IVIG treatments give me a few weeks of feeling a bit better with more energy, and for me that is energy to get in and out of bed, feel up to going to Wal-Mart or the mall, both of which are fun and lift my spirits. I am able to swallow better, breathe better, have a sturdier neck with less pain as it tries to hold up my head. My legs still have not been positively affected by the IVIG. However, it is not for sure that they are only affected by the MG. This is not the time for delving into that, though.

Whenever I ask "Why" today, I wonder if it is to seek the reason God would have had me go from the person I was to this . . . well, what would "this" be? What would you call me? I do not like any of the words that typically describe someone such as I, and that is inVALID, disABLEd, !HANDIcapped, unABLE, bedridden to name a few. The idea of putting me in an assisted living facility came up within my family recently. SQUAWK! Another thing that this is not the time for indepth discussion, too. But, really. If you start putting everyone who cannot walk, or are in wheel chairs for whatever their reason into nursing facilities, where would you put them all? Besides, I am going through these one week out of the month treatments because we are looking for improvements, not to stay the same, nor get worse, but to IMPROVE! Will that happen? We do not know. No one can say, but there is more documentation for improvement than for anything else. It was the first thing I found about MG. Remission is possible. BUT, not cooped up in some nursing facility! Dr. Ali says I am smart, and I have too much living to do, and I know what dear Arthur Franklin will say, too, when I tell him about it! He has watched me fight too hard since 2000. Well, I cannot stay on this subject now; my fighting spirit is being stoked, but I do want to say that my son and daughter made me feel - well, what is the best that one can be made to feel? Whatever it is for you, then that is what is was for me, whenever we discussed this issue recently. With what they said, it helps to strengthen my resolve to keep working through my blog, and any other means that I should find along this road, to help others.

I know now that there is a lot of activity out there in the blogging community alone, I'm just learning my way around, and I am curious as to what is out in the cyber world beyond that nowadays. I am not new here, only the bloggers' world. I've been here since the mid 90s, having been around during the web ring days. I *know* and with the blood drive over, I will not stop, but go searching for what God has in store for me next, because I am sure He is at work doing something in my life. He showed me this during my hospitalization. Sometimes, God just needs to slow us down so we can hear Him. I could easily be that kind person. *s*

"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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