Sunday, April 3, 2011

What is normal....?

Well I think my get up and go has officially got up and went!
 I am really struggling lately with getting motivated to do anything that involves any effort on my part. Simple routine tasks, like getting out of bed in the morning, have become a complete struggle.
I am having an extremely difficult time getting adjusted to my medications and the new dose they "upted" me to. This past week I have felt like I had the flu (achy and sore all over), my throat is raw and has the appearance of ground hamburger meat and I am still having trouble breathing. (It's kind of hard to breathe when it feels like an elephant has planted his large rear on my chest!)
At my last visit with my doc he told me this was all normal and until they can get my meds leveled out and work out all the kinks, I would most likely feel this way. I just love being the one they choose to be the kink worker outer. I mean what a huge honor! "Routine blood work, close monitoring and daily supplements will all assist us in ensuring that we are on the right track." Blah..Blah.. Blah..
One thing he did tell me that was kind of surprising was that something I had told him previously, not sure what that was, made him pull the re-cap of my pathology report from my brain surgery in 2007. The report stated that the fluid taken from within the cyst had "a motor oil constancy", which apparently is not typical of a AC.
So, I am sure you know what my response to him was - "What is it typical of?"
His response - "Not sure".. What? How can he be not sure? I mean how does a motor oil consistency substance get into your brain and more importantly what is it? AGAIN - "NOT SURE"!!!
What he did assure me of was that he would be looking deeper into it and getting the full report to see if was able to shed any new light on the subject. Please, doc shed some light!!
You can imagine my surprise, as this was the first time I was told this. Why was this never mentioned before? and more importantly how come no one has ever looked into it? I mean I have know for a long time that I do not have the biggest brain on the block, but now you are going to tell me I have some sort of oily sludge inside my brain. Great!!
When I questioned him about why it is so difficult to just go in and remove the entire 5 quarts he told me is is not that simple. Seems that not only do I have a forgein substance lurking in the depths of the nooks and crannies of my main control panel, I also have a zero chance of having the navel sized cyst completely removed due to its overly complicated location.
My next question: "Is this a ongoing battle I will have to continue to fight for the rest of  my life?" ANSWER: "Yes, Mrs. Smith, I am afraid so. I am so sorry." It will never get better and it will never go away. Regardless of how many operations, I may or may not need. My only hope at a somewhat normal life is medication, and lots of it, to try to stabilize the situation and testing to continue to learn as much as we can about my conditions.

While completely depressing news to hear, I have always know deep down inside that this was the case. I have always just been to afraid to ask. So after taking it all in.. my response "You don't know MY GOD because if you did you would know that with Him all things are possible!"
Smiling doc told me - " I know Your God, I know you and I know your not giving up without a fight. But I will say that is the first time I have ever, in all my years of practice, had a response quite like yours, but then again I have never had quite a patient like you either." I guess I will take that as a compliment!

Praise God for blessings we understand and Praise God for giving us the strength and direction during the times we don't.

1 comment:

  1. Wow Jess. I am praying for God to heal you completely and blow the doctors thru a complete loop. I can't imagine how hard it can be at times to hold that mask and stay positive. I pray God gives you his strength and joy to stay positive and find some form of balance in all this chaos. I love you. - Amber

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