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Friday, December 16, 2011


I seem to be speeding at an ever accelerated rate to the finish line.  My finish line.  But this is not a triumphant finish; this is one of defeat.  Which could, I suppose, be considered triumphant.   Even as I write this, I feel (in my body) how long it’s taking me to simply survive compared to a mere six months ago.   Of course, time itself is moving much more rapidly, and if you are to believe the Mayans, will come crashing to an end in December of 2012.  Watch the dvd on it: “2012: Mayan Prophecy and a Shift of the Ages” it’s quite fascinating because it’s based on math and science, not religion.   I use to think that as we age, time seems to move faster (which is true)  but this is more than that.  Oh well.

The acceleration of my NF is another story.  My hands are losing their coordination, I’m numbing out from  the waist down to the point of feeling nothing….numb like when your hand goes to “sleep” and you need to shake it back into existence.  I can shake it back for now, but who knows how much longer.  The neck brace I wear to try and reduce this stopped working a while back.

My body “jumps” higher and higher when I’m laying down reading, resting, watching television, etc.  Very scary.  All very scary but most especially is the loss of sensation from the waist down as well as my balance.

I should be using my walker more, but at 58, I am resisting it like hell.  But I fall into walls in my apartment; I use the cart at the store, so I’m okay there, and I rarely go elsewhere.

The stomach upset due to the medication has taken a nasty turn.  I use to control it very well with diet, eating Activia with fresh fruit and flaxseed meal every single morning without fail, coupled with magnesium (500 mg) twice a day.  That stopped working a while back.  I am afraid my bowels have become like my bladder: neurogenic….I catherize myself, but other than laxatives, there isn’t a whole lot one can do.  I added and subtracted certain supplements,  I switched to a lactose free yogurt, but the only place I can get it is the PCC or Whole Foods, both of which are miles from me.  But I go to the PCC once every other week and stock up.  So it’s better now

I see a “healer” who does a lot of naturopathic things such as acupuncture, etc.,  and she gave me a few supplements, explaining how each worked.  These are not your mother’s supplements and you can’t get them just anywhere.  But she trusts her source and I trust her, so I am taking them….more pills….but with names like “Spanish black radish” and one other that I forget, ya gotta love it.

I am terrified at the sudden acceleration; tumors on my face are cropping up overnight….I don't see friends and family that often (well, when I was healthy the amount of time I see people seemed normal, but when one is isolated, it feels like an one is to blame, and I'm not guilting anyone over it).  Still,  I sometimes get these calls from friends who are ill with some cold or something and they say things like “I’ve been in bed for 24 hours, I can’t leave the house, I’m losing my mind!”  And honestly, I don’t know if I want to laugh, cry or run screaming into the night.   But alas, I’m in too much pain.

And really…until and unless you walk a BLOCK in someone else’s shoes, one can’t expect anyone to ‘get it’.  It isn’t necessary.  I don’t know what it’s like to be blind.  But having this disorder has taught me patience, understanding and an ability to support those who are going through a challenge. 

I was at the dentist the other day...a long, long, two hour appointment and they know my situation and can tell how uncomfortable I was.  The dentist kept telling other people how much pain I was in the last time, but how I insisted on finishing up with the appointment.  Truly, what else could I have done?  But one of the assistants said "There are people who come in here complaining about this or that and make it seem like the end of the world, and here you are, with everything to complain about, and your not"  I know she meant it as a compliment, and I thanked her for her kind words, and the truth is this: I complain plenty, just not now...and I can sit back and NOT complain because that's what this disorder has taught be patient and thankful for the blessings I do have.  But I'm not that way all the time, trust me!

And, as bad as it gets for me, I have a roof over my head,food in my belly and people who love me in spite of my many shortcomings.  Yes, I lost my health insurance.  But I haven’t lost my friends and family (so far). 

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