3 years Ago
They first handed me a box of mystery meds and said, “Try these, record this and that and help us understand the MonSter.”
Yesterday was my 3 year check up.
Out drains more blood, Math test, timed walk, 10 peg test, exam, vital signs, MRI soon.
Quiet day. Day for wondering if it is worth it,
Developing my own mental questionnaire to go with the ones they give me.
What describes best your mood?
Befuddled? Bewildered? Bewitched?
Does the minimalist paper diary make you angry/scared/inspired anymore?
Daily? Weekly? Monthly?
Do the shots hurt anymore? Even if they do? Do they actually feel good? Thinking I am getting real stuff even if it makes me sicker.
Do you care anymore if they hurt? Sometimes/rarely/too much/too little/What was the question?
Do you still think even for a second when you open the fridge that the cake box is really a cake box and not a box full of shots they said was worth a lot of money?
Do you still think, even if you get a dreaded disease from the shots, that the shots are worth it if they delay the bad time that may lie ahead for you?
Did you ever think that 3 years would go by so fast?
That shots wouldn't scare you anymore?
That Mri's would become a meditation place of loud prayer, count one thousand one, one thousand two, three up to 60 and repeat. When they say 6 more minutes by the time you get 6 reps it is over.
You cannot think of anything else when you think a number. Wait is that a question?
Now with the 2 ½ year extension, will I blink again and they will be scrambling for more funding?
Will they ever throw off the labels and say This arm, this arm did so much better that we cannot let the other 2 go on?
My question. What are they seeing? Combi Rx has been at least 3 plus years and several more to go. Genetic testing... will it be ongoing?
Stay tuned because what they are studying is the closest thing to disease progression modification.
Ok quiz is over.
Now take the rest of the day to do whatever you want. (I did).
Mary
So what did you do the rest of the day? =)
ReplyDeleteI putzed around the house, organized some quilt materials, exposed myself to sunlight, (deprived of in my office) went out in the garden, tried to imagine how we can keep the farm going and what to fix first. Took a nap on the front porch, ate a grilled cheese sandwich, talked to the cats, crows and baby swallows on the power line.It was a great day. I was walking fine, no exacerbations knock on wood since starting mystery DMT's. Thanks for stopping by and asking. It really was a great day.Mary
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