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Wednesday, February 26, 2014


When I was 11 years old my paternal grandmother was sick with bladder cancer (though at the time I didn’t know why she was ill).  One day, a friend and I rode our bicycles to her apartment, which wasn’t far.  I was in her bedroom, patting her on the shoulder and telling her she was going to be alright, the way I had seen grown-ups do it.  What happened next astounded me.

She held my hands, looked me in the eye and said “No sweetie, I’m not.  I’m dying.  And that’s okay because it’s all a part of life.  I don’t ever want you to be afraid of it”

I don’t think I breathed for five minutes.  I was afraid and unsure of what I heard.  But it wasn’t death that frightened me.  I was wondering why my grandmother, whom I was especially close to, would talk to me like I was a grown-up.   Nobody talked to me like that.  This was 1964.  It frightened me because I knew she told me this for a special reason, I just didn’t know what it was.

As time moved on, and especially now, I have a deeper understanding of why she shared that with me.  I was diagnosed with NF at age 11.  I don’t know if my grandmother knew specifically about the diagnosis, or if she just sensed I was different.  I was sick a lot as a kid, much of it before age 11.  So she saw those illnesses and maybe she sensed my physical being would be challenged during my lifetime.  Not much was known about NF back then anyway; it wasn’t even called NF.  So who knows what she knew.  She was sensitive in ways not recognized back then and even now, for some people.

I’m thinking of that now because I’m re-reading books on the soul, as well as ones I haven’t yet read.  I’m recalling experiences I have had with the other side and telling myself that there is no way they can’t be real.  My experience with helping that woman cross over comes to mind (I wrote about it on this blog…”First Encounter” I think I called it) as well as some other unworldly things that I know was not “swamp gas” (no UFO sightings, just an expression).  These experiences all happened 20 years prior to me needing the drugs I use for pain today.  Now, I don’t have them anymore.  The drugs surpresss whatever gift I had.  Not entirely, but enough.

As my NF progresses and it seems to do so daily, I feel life kind of closing in on me and I get scared.  And if I’m lucky enough to feel her, my grandmother soothes my fractured heart, my frightened mind and my sore body as she says “…it’s a part of life and I don’t want you to ever be afraid”

The pain is so very bad lately, all I want is to go HOME

Monday, February 24, 2014

I'm Back

Okay, I’m back.  Lots of pain today, CBD hasn’t done much of anything though I got some weed high in CBD and that seems to help.  It just needs to be delivered by smoking it, unfortunately.

The CBD oil I ordered is brown and thick and kind of gross.  I’ve tried putting it under my tongue like it’s suggested….but my lips and teeth turn greenish brown and when I brush my teeth, the stain gets on my toothbrush.  It seems to work okay if the pain is kind of middle of the road…if I need to go out I like to dose up (when I’m not the one driving)   I just tried it again.  It’s pretty yukky but if it works, who cares?

I called the library to ask about bookmobiles and it turns out they actually deliver books and CD’s and DVD’s right to your door!  Once a month, Books on Wheels will come by with the requested items, which I have always done online.  But getting to the library when the item beomes available is a challenge and of course, I need to watch the mileage each month.  So I am grateful for this new development.

I need to renew my license plate tags and this year, emissions testing.  Not quite sure how I will manage that.  And, because I seldom drive, it might not pass the emissions test.  Sigh.

For the first time in a while, I didn’t watch much of the Olympics.  I was so turned off of ice skating by the way they chose the team (one person skated better than the one who went) that I am no longer interested.  I ice skating has been losing a lot of ground because it’s very subjective; even if someone falls they get a pass if the audience likes them.

Vinnie and I are still together though the sometimes monster (biting, torn down a curtain rod with curtain in my bedroom, knocking things over constantly) is definitely on probation.  We shall see.

I pray your pain is manageable and you trip here is a happy one, in spite of, or perhaps because of, our challenges.

Tuesday, February 18, 2014

CBD Bust

Well, the CBD is a bust so far.  Big surprise.  My pain receptors are full and opioids do nothing so I thought a back door approach might work.  Will use what I have left, but the pain is just getting worse and worse.  It doesn’t help that a 10 pound cat loves to sleep right on my legs.  I told him he could only sleep there is he would heal me.  And he’s a whirling dervish in the mornings. Knocking things over and breaking a few.  If anyone wants him….(kidding…sort of)

I have been going over my wishes for after I die with my family.  Still working on a backup plan if the bio storage thing that CTF is supposedly putting together isn’t up and running.   I have a call in to the pain clinic at the U to ask them if they have a body donation program.  I just want it to be for NF research and nothing more.  And before that happens, I want the traditional Jewish way of watching over the body after the soul exits, for three days (loved ones take turns).

It’s difficult to have these conversations, but necessary.  I encourage you to have them with your families, whether or not you are ill, because you just never know what is going to happen and you don’t want your loved ones and or friends wondering what you would have wanted.  Part of me just doesn’t care, but I did put a few things together besides what to do with my body.

I’m not sure how much longer I can do this (the blog).  I will try, but it’s been getting harder and harder because of the pain and my mental and emotional health.   But I’ve enjoyed doing it and it has kept me somewhat sane.  If I don’t write anymore, I thank you all for reading and I hope it’s helped you sometimes, in some ways.  We shall see….

Saturday, February 8, 2014


I’ve been looking at end-of-life decisions lately.  My dad, who will be 90 next month, has been going over everything he wants with my brother and sister.  I’m not involved because I can’t be there physically. Which means I won’t be able to say goodbye to my dad at a gathering of any kind.  And, he wants to be buried next to our mother, of course, in MN.   We now live in WA state.  This stuff is so hard for me.  My dad and I have gotten real close over the last 20 years or so….maybe a lot longer.  We talk daily.  I know that it’s more important to have a good relationship than it is to just be at someone’s funeral, especially if you are carrying regrets.  And a little piece of me has already made peace with it.  Still.

Anyway….I’ve been planning everything for myself in my head for a long time and I finally wrote much of it down.  One of the hardest questions to answer, one that my brother asked me, was “what my wishes are” for after I die.  I’ve got everything in place for before I die in terms of living wills, power of attorney and DNR,  but what about after?

And what about after, anyway?  Being put in the ground never really appealed to me…probably an irrational fear of not really being dead.  And being cremated REALLY doesn’t appeal to me.  I’ve been thinking seriously about donating my body to NF research.  So I emailed them.  I’m already in the NF Registry, which is a great thing to do in the event that some kind of research or clinical trials start because then they have a data base filled with potential lab rats like me.  And if I qualify (who knows if it works in reality; in theory, its great) for one of those trials, they have all the information without me having to be aware of a trial….they would contact me.

So I emailed them about body donation and they wrote right back telling me that as it happens, they are in the middle of organizing a “BioStorage” system.  She wrote that they get occasional requests for this so that’s why they are working on it.  I can’t believe they haven’t before….I mean, what is research if you don’t have the bodies to look over forensically?   I just don’t want to end up on an autopsy table for first year medical students.   Not that they don’t need bodies as well, for obviously they do, but I lived the whole of my life battling this disorder and if they can find one tiny little clue that may help someone else with NF….I’d like to be able to help.

The way I figure it is that I’ll be done with my body and G-d will be caring for my soul.  Why not?  Of course, the same fear of “really” being dead applies!

Sunday, February 2, 2014


I’ve been investigating cannabis oil with cbd, which is not the same as thc, the ingredient in pot that makes you high.   There has been lots of talk lately about cannabis oil with cbd, which has been proven to end seizures and help with chronic pain and a host of other things.  Without making you high or even tired or goofy.

I had some weed that had more of the cbd in it and it was great.  It really helped with the pain and did not make me “high”.   But I’m having a hard time finding it.  I haven’t even gone into a marijuana dispensary yet because it is too damn hard to find them and to get there.

It is profoundly frustrating when our government continues to consider cannabis as something worse than shooting heroin, or just as bad.  Of course, if people actually started to improve, what would become of “medicine” and the doctors who treat us?  Scientists have been trying to “cure” us for many lifetimes, but every time they come up with a possible solution, it is shot down.  Think of all the out of work doctors, nurses and other health care professionals if the answers to the most perplexing questions were actually solved.  Makes you think.  The pharmaceutical companies would rather poison us with man-made copies of the real thing.  And charging a lot more.

The pain has been horrific these days.  Can barely go out the damn door.  Lately the pain has been like withdrawal symptoms; legs jerking around and folding inward, toes curling.  I am willing to try anything, even if it kills me.  Because I can’t stand much more of this life.

I try, I really do.  I think about what my purpose here on Earth is; I try to understand what it is that I am missing in terms of that purpose, and whether or not I am just avoiding some of the bigger questions.   But the pain keeps me from considering much of anything these days.

And then, for one or two days, I think I have my gastro issues in check….but I’m losing weight again and there isn’t much I can do about it.  I eat.  I eat all through the day, small amounts.  But pain burns adrenaline which burns calories so keeping it on is impossible.   I cannot tolerate any of the drinks with the added calories.

I’m so ambivalent about being alive, I’m sure that’s the crux of the whole thing.
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