So hard to believe that it has been a month since my last post. As the one month mark was approaching, I decided to see what I could put together. Usually, I really don't have to put anything together, as I just write like I am talking...so easy. Tonight, I am just going to say a few things and get back to bed....couldn't let the month mark come and go!
I have been having a hard time for the past several months, with no sign of an upswing...and, from what the doctors say, no reason to expect one. My problems began seven years ago with debilitating neurological symptoms.
Approximately two years ago, my autonomic nervous system issue, P.O.T.S/Dysautonomia was diagnosed at Vanderbilt...the leading Autonomic Dysfunction center in the country..so they say. POTS is a definite setback, since I need to be horizontal for most of every day, to keep the symptoms in check...debilitating symptoms. Getting this additional diagnosis, was like getting kicked while I was down. This has no connection to my original neurological issues, which are still up and running.
Unfortunately, I now have another problematic issue to tack on. Again, this is relatively new the past several months. My cerebral spinal cord fluid pressure is double what it should be surrounding my brain. This is a dangerous condition and we need to act on it soon. My neurologist, at the time of my spinal tap, ordered four vials of fluid to be drawn and tested for everything under the sun..hoping to come up with an explanation of this newest guest at my party. I'll have the results the end of this week. At this point, I hesitate to say too much about what this might indicate, since we are hoping to gain more information from the fluid test results. I'll write when my neurologist has this figured out and a game plan in place.
The heavy pressure and stiffness in the back of my head and neck has made my brain all but shut down. There really is nobody home these days!!
I was lucky enough to babysit the grandangels for a short while this afternoon. They are the happiest and cuddliest babies I have ever seen. They are like "Grandchildren Soup for the Soul"...so heart warming. Before I went, I knew I should have not left my bed. I decided to go, since chances of improving do not seem to be in my future. If I didn't go when having bad days, I wouldn't go at all. I decided to just go for it today. They were so precious and well behaved. Luckily, Jimmy came at the end to relieve me for the last fifteen minutes. I came home and was in a horrible condition...the kind that is scary. But, if I had to do over again, I would have done the same. The hugs, tickles, laughing and snuggles are priceless. As much as my physical condition suffers, my heart is just exploding with the most precious love you can imagine. I can't do it all the time, but when I do go, it is ALWAYS worth the price to pay later. Hoping I will be able to go for a short time again one day next week.
As I said, my brain isn't working at full capacity these days. I know there was something really funny that happened recently. I was looking forward to sharing, but for now it is lost in space.
I have to wish belated Happy Birthdays to my brother John, sister-in-law, Lisa and my friend of forty five years, Rick!! Happy Birthday and nothing but love and best wishes for a beautiful, healthy year for you all!!...and, XOXO
I am so out of it, so please excuse the grammatical/spelling errors. Not a night for proofreading.
Thank you to all that are reading. I am always amazed when I see the number of hits. Thank you all for your support! I feel less like I am alone in this (as the Bachelor would say..) "journey" :)
My playlist is now playing Andrea Bocelli, singing "Time To Say Goodbye"..he could say that again...oh, he just did! I can take a hint. Time to melt in to my bed and pillows....
No comments:
Post a Comment