Thursday, May 10, 2012

MS.. 6th Tysabri infusion and some reflections....

I don't like posting so late at night but it seems to be around this late hour when thoughts hit me so I'll just go with it.  Who am I to argue with myself?  I'm rather cooky but I'm hardly insane!

My sixth Tysabri infusion was today (technically yesterday but since I haven't gone to bed, it's still Wednesday in my mind) and I have yet to decide if I want to continue with it or not.  Before my seventh infusion next month I have an appointment with my neurologist to discuss how I feel I am doing and what his opinion is on this, too, so things may change.  One thing I'm already a bit upset at with him is that he cancelled the MRI's he had wanted me to have before the next infusion and appointment.  He prefers to see me first and maybe then order them.  This does NOT make me happy in the least but if I have to wait, so be it.  I'm sure I'll get my way in the end.  I refuse to be silenced when he is the one who is working for me and not the other way around.
While in the infusion room I was able to talk with my neuro's nurse, Melissa (she is such a doll!), about a few problems I've been having lately.  I mentioned the extreme lack of appetite or desire to eat, and also how my blood pressure readings have been quite low considering I have been on hypertension medication and I check my pressure both before and after medicating.  I plan on calling my primary care giver tomorrow to make an appointment and see if he wishes to lower my dosage from 10 mg. Lisinopril to 5 mg., take me off the medication completely, or suggest something else.  My average readings have been 100/62 and I don't wish my blood pressure to get much lower than that.  After speaking with my neurologist, Dr. Short, it was decided that rather than taking 3-25 mg. tablets Topamax in the morning and evening, I should change it to 2 tablets in the morning and night instead.  I'll see if this helps with my appetite yet still keeps those nasty headaches at bay.

When Dorraine and I took Emmi Sue to the vet yesterday, I had one of my favorite Bolivian CD's playing in my car.  The group was Proyección which features Boris as lead singer, the man who was my first love and I was in love with for well over a decade.  It hurt to eventually let him go but when I did, I was finally able to enjoy his voice and music again and I'm so glad that happened.

Everyone has songs that bring back memories or remind them of a certain person but for me it's far more than that.  There are dozens upon dozens of songs that Boris sang to me during two vacations in Cochabamba, Bolivia and although I used to cry when I heard them, now I smile at the memories and relish in the love we once shared.  You see, he was already quite well known in Bolivia by my the second time I saw him in 1996 and as much as we loved one another, I didn't want him to ever think of me as just another girl who only loved him for his voice.  It was much more than that.  I had met Boris in 1993 and it's true that I met him because of his voice but I fell in love with the man behind the singing and he fell in love with me.  I'm a woman he will never forget as I did not give in and sleep with him as I'm sure many others did and have since then.  I guess you could say that keeping our love "pure" is what has kept it so beautiful in my memories and is also why I can think of him as sweetly and smile as I do each time I hear him sing on the CD's.  At least one, if not two, of the songs he has written have been to me and I still get goosebumps when I listen to these songs.
I'm not sure exactly why I'm writing about my music or about him tonight except that to know me is to know how passionate I am about every aspect of being Bolivian.  It's a part of what makes me who I am and I love it.  There is no music on earth that speaks to my heart and makes me feel as if I'm soaring far above the earth as my beautiful Bolivian music does.  It is simply breathtaking.

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