Greetings to my faithful followers!!
On this Memorial Day Weekend .... I would like to #1 - Thank all those who have given of themselves, their loved ones, etc to defend not only my safety, but my freedom of speech and a few other things I do that would not be possible in other areas of the world. I am forever grateful for your service and sacrifice on my behalf..... and for that, I / we ... should remember ... memorably. I salute you all .... past and present!!!
On another note, given as I have an extra day this weekend to not only push my body and get some much needed things back into place so I can move on to the next project, I can rest and reflect. The last few weeks have been a pure hell for me in regard to getting my body to function at a level that surpasses that of a 90-year-old woman. The inability to breathe at a level that allows for free and fluid movements is frustrating at best. My head has been full of all that allergy crap that makes those who suffer allergies understand. On top of that, all the steroid use, the lymph node swelling and associated maladies that seemed to have moved in to dampen my spirits .... my mind is back to being somewhat blank, a feature in which my daughter is most disappointed as I made almost immediate change for the better right after my stem cell treatment. I am hoping this will be short-lived. Although my endocrinologist was thrilled with my overall numbers this past visit, I, on the other hand, was disappointed I didn't see decline in my A1c. I do know, that it is all directly related to the steroid use, but that still doesn't make me feel better. It is just one more frustration.
With the latest ER visit and related followup visits, and still, no real answers, yet continued weird happenings, i.e., like right now .... my vision has gone haywire again, like that aura sort of stuff you get going on when you suffer from migraines, only I can feel the muscles in my eyes making me feel crossed in the eyes, and then I get dizzy. Hillary swears it is a form of low blood pressure known as orthostatic hypotension as it gets totally undoable if I stand up too fast. Now, for those who know me personally, one could get a vision of me bent over, trying to pull things off the floor level, ass and all and then coming up fast enough to take you right back down again. Yesterday at work, my mouse took a header off the back of the tray under the desk. So I bent forward off my chair, proceeded to crawl under the desk to retrieve the mouse, and bamb ... fell my happy ass right off the chair!!! The whole time seeing "stars" if you will as far as my vision goes. What could I do ... I proceeded to sit there and laugh myself strong again while a couple of coworkers looked and tried to figure out how I landed in such a position.
It is this sort of "cover up" as I am now seeing it, that is bringing me down. I don't want to continue to "piss and moan" about how I don't feel good, it is old, for most of you, but without a doubt, for me!! I try very hard to stay positive, to think that all these issues will pass, as they have in the past, things move forward, life goes on .... but lately, I wonder how long I may be a part of it....?? I take part in this FB page in which transplant recipients talk about what they have been through in regard to the islet transplant, the one in which I was rejected. Now, please, don't take this the wrong way, my goal, as I thought was the majority of this group, was to find a cure!! I am totally thrilled that these folks have made such improvements, being able to go many years now without insulin. However, I am fully aware, more so now than prior, that not all people are candidates for transplants of this manner. One, the antirejection drugs, which were my biggest fear, and I am now so glad I was not taken in as part of the trial. I do not believe I would have fared well. Not only that, I brought to the attention of the board the question about ... what, when this procedure gets FDA approved, will they tell potential recipients??? It takes more than one treatment as it has been proven that one cadaver does not produce enough cells for the transplant to take and be productive. 2. NOT everyone will be eligible for one reason or another, as in my case, a high PRA, making match difficult. Is it fair to lead the public on like this, or for these people, who are amazing in their own right, to now only tout this as the only possible cure??? I have had to step back, due to my frustration levels and the fact that not only in this particular arena, but in my work environment as well, I am frustrated beyond belief with small minded, closed minded, inability to look outside the box and think that there could be more than one way to make the final CURE be a reality for more than just the few who match, or that in the business world, micromanaging doesn't usually work, and causes much stress along the lines of employees who do their job, others jobs, and clean up messes that others create over and over, and yet .... get no appreciation for their efforts, just walked over a little more.
In this aspect, I can see why so many people are frustrated on so many levels today in society. It seems as though (only my opinion at this point) there are no more "sense of pride," "work ethics," moral compass that leads one to do the right thing. It is more ... as doing the right thing, is a matter of who is defining it, and in my opinion, again, it is only defined by those who will benefit first, and only them, and not the big picture, the overall better of the world. Maybe I think on too big a scale, but ... I have been fighting with this small mentality for too long. I can't thank those who I have encountered over the years, doctors, nurses, hospital staff, researchers, people who I have met and become friends, who see the fight at hand, and are open minded to what a potential could mean. It is an issue that I remain passionate about, I am just down, tired, and not sure how to approach the next step. The ultimate vision should be a cure for everyone, not just the ones' who can afford it, or will be the best match, etc .... think about it ... anti-rejections drugs are boku' expensive, not all people react well to them, the match factor, the number of donors needed to make one person a positive "potential" cure ... etc ....
Think about it people .... for anyone who has read research over the years ... the cure is out there and so close. It has been squashed on so many levels at so many times .... not just for diabetes, but for what I feel is cancer, Parkinson's perhaps even AIDS .... so why? .... why? don't the people have this treatment available to them?? I still feel it is the multi-billion dollar cash-cow known as pharmaceuticals!!! we are going to allow them to rule, to run our lives, to kill us all with the side effects which certain agencies let slide and then wind up yanking these great products from the market based on things like "sudden death!!!"
Ok ... well .... I think this ramble has gone on long enough. I try to remain positive, but I must admit, honestly, I feel like I am losing this battle, and in turn, will lose my own battle. I am only one person, a spec in the big scheme of things. I am unsure of how to proceed with this mission I thought I could accomplish in the awareness arena. Life is about to take a new road change .... on so many levels, which road will I take this time? Where will I land? Will I be happy in the end? Will I make a difference, and will anyone really care??
Ok ... well ... More of my own verbiage for me to chew on and ponder ... LOL ..... Thanks to Mrs D. and Aunt Ann for your continued comments and encouragement. Bee and Deb for keeping me in the humor and grounded. Yes, Ann, I am sure, without a doubt my mother would be proud of me .... unfortunately, lately, I am in child mode and would prefer to have her here with me fighting the good fight, or preparing for a trip to the ocean to clear our souls of the negativity. I do thank you for acknowledging her and how she may have felt about me and my fight. She was one of my biggest fans .... and when I am low like this, wish so deeply she was here to talk it all through ... maybe then I wouldn't have to type all this and throw it out into the world wide web areana for all to see and read. However, I do believe, given what I see as to who and where this is all being read, that something I am doing is making a difference somewhere, in someone's life.
A peaceful and enjoyable weekend to all!!!
PEACE and LIGHT
et
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