1. How anyone could endure such pain as RSD.
2. How patients often end up teaching doctors about RSD,
instead of the other way around.
3. How friends or family could abandon a loved one in
need.
4. How a bed bound person can lay in bed 24/7 quite
comfortably - when, normally, laying in bed too long would tend to cause pain or
discomfort.
5. How something as grave as being bed bound could actually
produce bed humor.
6. How most medicines, while helping one problem, will tend
to create other problems.
7. How a body can suddenly give out with no
warning.
8. How disease can go into remission...and, likewise, come
out of it.
9. How the clinical aspect can make more sense than the
practical aspect.
10. How a body could be so frail.
11. How spreads can occur without injury or
provocation.
12. How, despite commonalities, each case can be so
different.
AND THE NEWEST ONE:
13. How an RSD-er, unable to swallow/eat, could be denied
nutritional support; how periodic hospital stays (requiring intravenous
feedings) don't warrant a feeding tube...how could this be?
*Feel free to contribute your own musings. I would be glad
to post them.
I hear your compassion in this blog. I signed the petition for the patient that is on your mind. I have marvelled at this condition for as long as you have. I don't think there has really been any progress in understanding - only some new forms of treatment that work for some and not for others. Nothing new there! Thanks for the blogs.I have finally gotten back to doing mine.
ReplyDeleteNita, thanks for you input and support, and please send me a link to your current blog. <3 You could post it on my timeline and my book page, if you want. That way more people would see it.
ReplyDeleteHello guys,
ReplyDeleteI wanted to thank you all so much for the love, support and compassion I have been shown. Getting to the root of the problem was a major eye-opener. I am amazed any progress was made for any period of time, and while my family that I remain close-they each have their own way of doing so: have supported me so very much: new friends over the past few weeks, and so on: and really the care for those here all along-and without God: I don't know that I'd have made it thus far.
The good news is that yes: a new PCP was long overdue. I don't like cleaning house this way, and it being naturally at greater personal expense, I suppose that I can say more of the behavior that I have witnessed, and the way people have responded after such a short time, making the emotional wound, I guess, would be difficult: save to say that it was the one person I thought I knew on the medical team: but that the behavior changes in the rest, well, I cannot blame myself for that: behavior speaks for the person. It has less to do with me and well, I believe more with them.
I have managed to put some of my story on my own CRPS website. Jane, I will pass it to you and you can decide the link: and the Facebook page location where the petition and my own story are beginning to be told, is there, as well are my own blog listings.
So the FB if it's okay: https://www.facebook.com/pages/CRPS-bone-joint-pain-Nutrition-Help-me-Beat-the-System/339144052857647
I am going to try and put updates on the Notes section of that which will post both publicly and on the blog I keep myself.
Thanks
AJ
Today I have an appointment with a NEW provider according to the page-and also on the 12th now with a new GI clinic. I am praying that though I will bring the file requested that they will having seen me a few years back (call it a difference in opinion when the clinical director was as disrespectful to one special kid who has always been there-even with it not being his job.