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Friday, April 24, 2015

I Know This Sounds Crazy.....

While having a genetic disorder like NF can make you feel profoundly different from your friends and loved ones, I think my feeling of being different goes a lot deeper.  I don’t remember ever feeling like I belonged: I’m talking as a youngster, under the age of eight, long before being diagnosed and much longer than understanding what it was I had.  I have always felt a disconnect; like a ghost.  But it wasn’t coming from any outward experiences such as family.  I had a loving, though far from perfect, childhood. An angry father, a sad mother, yadda yadda.  But I never was abused in any way.

No, what it is, and please don’t laugh.  Okay, you can laugh.  What it is, is a feeling that I don’t belong on this planet.  I have never felt at “home” anywhere, though when I moved to Seattle from Mpls, I remember crossing the I-90 thinking “I’m home”  But in a short while, although I love Seattle and would never go back to Mpls, it still didn’t feel quite right.  So the feeling of not belonging on Earth came rushing back.

I always keep it tamped down.  I don’t dwell on it unless the pain is through the roof.  And then I just pray I can go Home, wherever that is.  But sometimes, when watching documentaries about whether or not life exists elsewhere (of course it does), I feel cheated.  I ask why, why was I sent here and by whom?  But it’s like praying.  No one (usually) gives you an answer or it’s not the answer you want.  So maybe it’s all the same thing.  Wanting to go Home, wanting to go back, wanting, wanting, wanting.  Never any good, the wanting.  Just makes the pain worse.  Concentrate on gratitude.

There is so much we don’t know.  We look for life elsewhere, but of course, we think of life, and the “ability to support life”(as we know it) is the same wherever they are in the universe, but we know nothing.  Just because we are carbon based and need liquid water for life, doesn’t mean those “out there” are sustained in the same manner.  For all we know, mercury sustains our distant neighbors.   Nothing faster than the speed of light?  That’s what we know to be true.  Now.  We know nothing.

And maybe, in the end, my feelings of not belonging are indeed the result of having this genetic disorder that leaves me in knock me off my feet in pain more days than not.  On “5” days, like this one (pain a 5 on the 1-10 scale) I can feel kind of normal, whatever that is.  But on days where I have to do everything and anything to “get out of my body” (when I meditate or find some other way to quiet my nerves both physical and spiritual) is when I feel it the most.  When I want to go Home the most.  And I know everyone who has heavy challenges, whatever they are, feel the same way.   It just feels to me deeper than that.  Like I actually left something behind somewhere.  Like I’m being tested; maybe from a higher power, maybe from a different kind of power.  Who can say, eh?

All I know is I’m ready to move on.  But whatever is on the other side, is not ready for me to do that, so here I shall stay.  Until providence tells me it’s time.  

Monday, April 20, 2015

Summer Wind

As you can see by my YouTube “promo”,  I’ve been figuring out a few things about how to upload from my iPad.  I can upload from my PC, but I can’t make videos there and don’t have a “smart” phone.  I refuse to have a phone that’s smarter than me.  The PC and iPad already get credit for that.

My new pain protocol isn’t exactly something to write home about.  There are the tolerable days and the days from hell.  Unless I stop moving all together, it’s usually the latter.  But if I’m feeling at all like I can move, I do.  I mean out of the house kind of movement.  But I pay for it big time the next few days.

I got a new showerhead and a shower bench.  The bench isn’t right for my tub and I need a different one.  The showerhead doesn’t attach correctly and I have to hold it which is difficult and awkward.  I have a call in to the maintenance guy who installed it.  He said the parts didn’t work right with it, but I think he did something wrong.  Maria, my aide, said the bench was far too big for me and her other client, who weighs a lot more than me (everyone does) has a smaller one.  So I put a call into my caseworker.  It took over a month to get the first one. Sigh.

Sometimes, the challenges so overwhelm me.  And as much as I like the sounds, feel and smells of summer, almost everyone in my life goes out of town for weeks at a time.  My brother and his wife will be gone for a good part of the summer as will my sister and her husband.  And several of my friends, too.  I’m very happy I have the help I do or I’d be miserable.

The food service I use to bring me meals once a week (enough for four meals) is great and the food wonderful.  If not for them, I’d eat even less then I have been.  I just don’t have the energy or interest in food anymore.  But I do like watching the eaglets eat!   They’ve gotten so big in such a short time.

Be well!

Wednesday, April 8, 2015

Been a While

Man, it’s been a long time since I posted anything.   I’ve been out of the hospital and home for a month already.  I even got to see my acupuncturist last Monday….hadn’t been to see her for two whole months and I could tell.   Even though it only grazes the pain (like everything else I’ve tried), it helps with other general things and lightens me a bit…you have to be grateful for what is right in front of you, right?

All the eaglets hatched from the Decorah Eagles site that I so love.  They hatched a few days apart and they are a little over a week old.  Already growing so fast.  Eat, chatter, sleep.  And the parents are such good ones….it’s impossible not to watch, laugh, and realize how fragile and beautiful life is.  I am watching them in another window as I write this….they relieve each other of parental duties; they still cozy on over them to keep them warm because they can’t regulate their own body temperatures for the first two weeks.  This is my second year following them and I learn so much every day.  Visit them at:  and sign on (no obligations or cost) so you can watch the “chat” and learn.  You don’t have to participate, but if you have a question, you’ll get an answer in a very short time from one of their many volunteer moderators.   I stay away from social network sites, but this one is a major learning experience, it’s respectful, and the mods do a great job of keeping it family friendly….kids watch with their teachers and classrooms.  And the panning and camera work, also done by volunteers, is amazing.  I have more screenshots then I’ll ever use!  And the hummingbirds drink so much I change the feeder daily!

The pain has been pretty much unbearable for days on end, but today, I got out for the third time in two months (that wasn’t a doctor appointment) and went to the bank and to get some more of my probiotic stuff.  I take so many supplements it’s ridiculous.  But I hope that it balances out all the yucky stuff I have to take.

And something is wrong with my very expensive air bed.  I wake up in the middle of the night and it’s so deflated it’s like sleeping on a wooden pallet.  My helpers and I have looked and looked (and listened) for a leak but we can’t see or hear anything.  It’s maddening.  I have enough trouble sleeping without this.  My brother though I should go and get a regular mattress and maybe I should.  I like the air one, though, and I have a mattress topper that is really fluffy and cozy.  It’s a mystery.  But it feels horrible because I am so thin and the tumors are everywhere so it hurts…everywhere.

I am also adjusting to my new/old regiment and taking the drug I hate.  But I hate all of them, as they do little or no good whatsoever.  I started thinking of all the things I’ve survived that should have killed me from scarlet fever, NF to near drowning to cancelling a trip on a 18 seat plane, only to hear it had crashed and killed everyone on board.  Makes me think.  Actually, throws me around between total confusion (as to why I am still breathing) to laughing my head off.  G-d has a sense of humor, I’ll give you that.

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