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Thursday, April 17, 2014


For the past few months, I’ve been planning for what I want after I die.  Given my situation, it just feels like the prudent thing to do.  Consciousness can be a burden at times, and sometimes that burden is insupportable and shifts to others around you.  You must act while you still can so that your family knows your wishes and are not left wondering.  When death comes suddenly, unexpectedly, people are often confused and fighting with one another over what they thought you would have wanted.  So even if you are healthy and even though it’s scary, write everything down and let everyone know what you want after you die.  Even better, have a conversation with those you love.

I have been wrestling with whether or not I want to donate my body (or parts of it in the form of tissue) to NF research.  I found out is getting close to setting up a system for bio donation.  I’m already on the NF registry but they need blood samples too and right now they don’t have a local blood draw place so once that is done, then I finish my registry by giving blood.   And then when I die, they keep my body for 24 hours to take what they need, and return it to my family for burial or cremation.   I’ve been thinking about cremation and having my ashes strewn over a bakery, but that’s not reasonable so burial it is.  My brother and I had a long talk about it; I just need to get things in writing.

Every morning I wake up with one less leaf on my tree.  The pain eats away at me and the only way I can think to make it better would be either a medically induced coma (which I’m guessing, the doctors will not agree to) to leaving my body myself with some out of body experiments.   I’m not ready to make a final exit but that may change.  Who knows.  I’m just having a very, very rough time of it lately.

My dad’s not well and my brother and sister are left to deal with him and with me.  It isn’t fair.  Yes, they both have pretty good lives (with just the normal challenges) but that doesn’t make it okay.  I have done all I can do to get the help I need and I know they appreciate that, but I’m spent.  I can’t take another challenge.  Whenever a health issue arises for me, I just want to ignore it and let it run its course.  Somehow, I always come up fighting.  I just don’t think there are any more battles left for me to win.  I mean, we are all going to die.

Friday, April 4, 2014


I don’t mean any of the following as complaints; I just need to set the stage for my question at the end.

As you may know, every once in a while I get a break from the pain.  It will suddenly, unexpectedly and welcomingly drop from the usual 8-10 (pain scale) to an astonishing 5-6.   See, people don’t normally measure their pain…no reason to do so unless you slice your finger instead of the carrots.  And that pain is different.  Usually not the kind of nerve pain that I’m experiencing.  Painful, you bet.  But emergent, not chronic.  It may be a 10 when it happens, but it drops quite rapidly with a couple pain pills.   And sometimes chronic but not constant pain, like say, bursitis, hurts a lot too.  Maybe even a “10” now and then.  But again, not constant.

Constant pain feels (for me) like someone is forever sticking a nail in your arm and twisting every now and again, adding lemon juice for an occasional irritating variety. Cracking your elbow and hitting your “funny bone” (which is far from funny) is the closest I can come to explaining what nerve pain is like.  But for me, it’s from the waist down.  All. The. Time.  That zinging, zagging buzzing like a million bees feeling that numbs yet-is-painful and to which I’ve grown accustomed, though not happily.  Due to the leg tumors, I can only wear sweat pants or something equally soft because any kind of pressure hurts like heck.

Now, the average healthy person might think, “Boy, she must really be happy when the level of pain drops” which is, by the way, as unpredictable as the weather.   I’ve given it more thought than just about anything else in the past 15 years (including blaming it on that unpredictable weather) and am no closer to figuring this out than I was when this part of my journey first started.  Don’t get me wrong; I am happy when the relief days come.  And grateful.  I pray non- stop giving thanks for it, especially if I’m able to get out without help (my car’s battery has drained three times for lack of use). 

Hang on.  We’re almost at the neurotic part.  I’ve tried many different things to take advantage of the feeling good days, from staying home like I normally do, hoping for a second “good” day (but staying home is so darn tiring) to going out to two or three stores and really taking advantage of feeling good and also a bit more “normal” whatever that is (and then I pay for it big time the next day). Normal doesn’t really fit into my lexicon.  But the why and how it happens, let alone trying to create it at will is hopeless.  I simply don’t know why or how let alone if and when.  Kinda like life, eh?

Okay (whew), here it is.  The neurotic question of the day:  Lately I have been asking myself, would I be better off by not having any good days (pain wise) because they only highlight how bad the rest of my days are? 

Crazy, eh?  A bit, well, Twisted.  At any rate, today I am having a hell on wheels day in terms of pain so I’m praying for a break in it.  And that’s the conundrum.  I want a break, of course, but by getting them I seem to be making myself hyper aware of how bad the bad days are which makes me less accepting of them.  I know.  I’m neurotic.

Tuesday, April 1, 2014

Nearly a Year

It’s hard to believe that it’s coming up on one year since Ted passed.   I was so hoping to be shortly behind him.  And yet, here I am.  My body continues to challenge but spiritually I seem to be a bit better, at least some of the time.  My helper situation seems to be sorted out at the moment so that’s good.  The moment.  Stay in the moment.  I mean seriously, what makes us think we have a choice?  We act like we do, but living in fear of our future tells me we are out of sync with ourselves.

If there are parallel universes I sometimes imagine a healthy version of myself living as a successful published writer, helping those along the way, traveling to places where people are in need for whatever reason (like the mudslide less than an hour from me in Washington) and generally having a totally different life than the one I’m having.  At the same time, I want to fully experience the life that I AM having and appreciate the good things in it; like a roof over my head, food in my belly, access to medical care and people who love me.  No, I never created a family of my own in the traditional sense.  But I have a full family of origin and friends.  So I am indeed blessed.  Funny that when we imagine another life it is always what we perceive to be “better” than the one we are having.

But is it?  What would I have learned if I didn’t have NF?  What kind of person would I be?  Would I have a husband and children?  Or at least, a partner?  Would I be kind, or cruel and selfish?  I know I’m a bit of both but primarily, I hope I am seen as the latter.  It’s funny because I always try and be especially kind to the people who are helping me, saying please and thank you and talking and laughing with them.  But when I get upset about something that has nothing to do with them and they hear my anger…well, let’s just say that one care giver quit because of my personality.  It baffled me because I thought we got along great.  I even bragged to family members about what a good oatmeal maker she was and even told her that I did.  Although she just up and quit and didn’t communicate with me, I think she was insulted and thought I didn’t accept all her advice and suggestions.    The reality is, I can’t take it personally and it had nothing to do with me, even if she thought it did. 

The pain is great today, but I had a little break this past weekend….I actually even got out on my own, a rare event.  I so cherish it when the pain gets down to a 5 or 6.  Right now it’s about an 8.  Not howling mad pain, but close.  And I still miss my new and brief communications with Jaime, who just disappeared after a short but fun online relationship (to NF).

Thursday, March 27, 2014


I’ve been doing a lot more spiritual work lately, trying to calm my mind.  Things just keep happening that test my resolve.  Being in pain is not for whimps.  And someone, another NF challenged person, sent me this:

Now grant it, healthy people don’t normally tell everyone if they have a urinary tract infection.  Some of us play our health cards close to our chests; others tell everyone they meet on the street if they have a rash somewhere on their body.

The point is, we get so exhausted mentally, physically, emotionally, spiritually and everthing else that is us that we don’t have the energy to explain much of what our struggles are with NF, and sometimes leave out important clues to people who need to know, like our doctors.  I sometimes get angry when a doctor says to me “You seem to be doing well.”    I want to scream but the truth is I’ve left out details that matter.  And they don’t want to appear negative, I get that. 

But guess what?  I know I’m not well.  Putting on a smiley face isn’t going to convince me I’m not.  Sometimes, just saying “I get it. I’m sorry. I wish I could do something” as a way of acknowledging the truth, would be nice.

I’ve been working on turning around my thinking about what G-d wants from me, what I should be praying for, and finding ways to serve G-d in spite of my condition.  I’ve been reading the Book of Psalms lately and having meetings with a Rabbi my brother introduced me to.  He’s Orthodox, but also a Cabbalist, which is an odd mix.  But he and his EIGHT brothers are all Rabbis all over the world.  He and one of his brothers happen to live here, but he is sought out all over the world for his knowledge of the Kabbalah.   Very interesting conversations.

The struggles with the pain continue.  And someone who got in touch with me via this blog just dropped off the face of the earth.   We only wrote a few times, but his last email to me was his last.  I had responded to a request he made about where to email him and he never got back to me.  He was very unwell with NF related issues as well as others.  Jaime, if you read this, I’m still praying for you.  If you’ve chosen not to continue our correspondence, I understand.  If you are too ill to write, I pray for you to get better and if you passed, G- d rest your beautiful soul.

Tuesday, March 18, 2014

A Momentary Lapse Into Normalcy

Yesterday was patch day which sometimes makes the next day a bit more manageable though it’s hardly predictable.  And for some reason, yesterday was the better day.   Better than in a long while.  I had an acupuncture appointment and did some errands before that.  Today I had a doctor appointment, came home and went out again to get ink for my printer.  Now THAT was a big deal, trust me.  A real lapse into “normalcy”.   I’m not sure what that is; I mean, my life is normal for me.  Oh oh.  I’m thinking again.  Dangerous ground.

Of course, now I’m in pain that is mind numbing (at least something gets numbed) but you know what?   I’m so grateful for yesterday and today (this morning anyway) that I just can’t stop thinking about it.  See that’s the struggle; I have so few “good” days that I want to dissect them so that I can replicate them at a future time, but of course, that is not possible.

And Vinnie, G-d bless him, is keeping me on my toes, though at times, ready to open the front door and kick his sorry behind out into the world forever.  Craigslist keeps leaping to mind but I don’t trust who I might find.  They say it’s a bad place to give away an animal, especially a beloved pet that was just a bad match.  Don’t know whether to laugh or cry.  People are telling me to return him and not feel bad about it, but I can’t help it, I do feel bad.   I mean, I think he’d be happier with a more active family but getting him to the shelter will be a challenge; they don’t pick up they don’t let you return on the weekend.   My helpers are gone before the shelter even opens.

So Sunday morning I heard a crash in the bathroom while I was on the couch.  I got up to investigate, and V had knocked a basket of towels and soaps into the tub….as I was cleaning it up, mumbling his name under my breath, I heard a crash in the living room.  I sighed and went to investigate that crash.  A picture of two of my nieces was on the floor, the glass shattered in a couple pieces.  As I was cleaning up that, I heard a crash in my bedroom (I’m not making this up) and I ran in there, exhausted.  He had wiped out everything on my dresser and my carpet was strewn with knick knacks.  I cleaned that up and opened the front door to let him out but he wouldn’t budge.  I wouldn’t have done it, but boy, I was tempted.

Then today, while my help was here, he tore from one end of my apartment to the other, knocking things over in his path…but it wasn’t his usual tear.  He looked scared.  It was then we both noticed he had gotten a plastic bag, the one I keep his litter scoop in, around his neck.  I was afraid to approach him for fear he’d bite me.  Luckily, it tore open and came off.  But there was litter scattered around the house.   Thankfully, it wasn’t his poop bag around his neck lol.

So….anyone want a cat?

Saturday, March 15, 2014


The tricks I use to stay in the moment with this agonizing pain aren’t working today.  And lately, they haven’t been working at all.  My legs are the worst; constant stabbing up and down both legs.  And I can see the tumors have grown considerably.  The tumors in my head have grown as well, and the headaches are coming more often.   And a new NF online friend just wrote that he’s going to the doctor today because they suspect a Schwanomatosis tumor.   I’m convinced I have one too.  But I don’t want to go to the doctor anymore.  It doesn’t matter because they can’t fix me, and what they say only scares me.  Why bother?

It hurts to breathe, it hurts to move.   I am saddened beyond words that my 90 year old father lives 45 minutes from me and it’s too far for either of us to drive…well, me especially.  They are going to be celebrating his 90th birthday next week and I can’t be there.  I am tired of missing out on everything.

And I’m ready to put Vinnie on Craig’s List.  He has way, way too much energy for me.  I don’t mind him running around, but he pounces on me, knocks things over and makes it harder for me to deal, as if it’s not hard enough.  But then he looks at me like “What?” and I fall in love all over again.  Damn.

My helper came sick today and I sent her away.  I just didn’t need her coughing all over me.  Plus she’s allergic to Vinnie.  I like her and I hope it works, but I suspect she’ll bail on me, especially when she lost three hours of work because I didn’t want a sick person around me.  With all my other problems, that’s all I need.  AND, she’s taking Friday’s now because my Friday person didn’t want to work that day.  I sure wouldn’t want to be Kathy, the woman who coordinates all this.

I’ve been thinking a lot about past lives, future lives and whether or not I’ll have to return to this planet.  I pray not.  I would much rather be doing whatever work I have to do without my body.  Or any body.  I was watching “Dallas Buyers Club” last night which I recommend, though it’s not an easy movie.   If you don’t know, it’s a true story about a man with HIV and then AIDS who is a game changer in the way it’s treated.  The end is worth the difficulty in watching what he goes through.  Reminded me of a movie (whose name I forget) about the guy who was behind the formulation of the ADA (American’s Disability Act).  Hard to believe it was only about 35 years ago when access to everything from doctor’s buildings to restaurants was not available to those in wheelchairs or had limited mobility.

Anyway, while I was watching this guy struggle, I was thinking “Why is he fighting so hard to stay alive?”  This got me thinking about everyone else on the planet that fights to stay alive, regardless of their quality of life.   I can understand it if an otherwise healthy person suddenly has an issue that needs attention.  If they had a taste of all the good things in life, they fight for it.   But for years and years, endlessly, with no hope for a cure?   My mind struggles mightily to understand the why of it.   The fight, sometimes, is relentless.  But is it worth it?

Friday, March 7, 2014

Little Victories

I have been making a concerted effort to eat more, and more often.   I’ve always gotten stressed about “meals” because I just can’t eat copious amounts of food at one sitting.  So I graze through the day but sometimes forget that it’s okay not to eat full meals like other people.  My body just can’t process that much food all at once.  So it’s oatmeal when I wake up (most days) with fruit and smart balance butter.  Later I have leftovers from my dinner the night before.  In between all this I snack a lot and have added things to my diet that are high in fat.

But the pain has an insatiable appetite, Picture Pac Man eating your food.  Pac Man being the tumors.  The adrenaline from fighting the pain eats away at the pounds and no matter how much or what I eat, it doesn’t stick   And I’ve added things to my diet that I normally never eat because the food is hard to digest.  I’ve been eating ice cream made with coconut milk (mainly).  It does have some milk in it and my tummy is sensitive to it but it’s very high in fat, which I need.  I also bought chicken sausages the other day.   I have very high cholesterol so I have to be careful but at this point, who cares, right?

And that is my conundrum.  I am absolutely ambiguous about living.  Perhaps that is what my soul is here to learn.  How to love life regardless of the body’s particular challenges, which seem way over the top sometimes.  Okay, most times.  I say I want to go HOME yet I get scared when the weight starts falling off again.  And when I get a notice that it’s time for my mammogram (having had breast cancer, I should have had a double mastectomy instead of just the right) I don’t want to bother because I’m so thin there is almost no breast tissue.  However, there are multiple tumors all over my chest and getting a mammogram hurts like the devil.  So I’ll probably let it go.  Because even if the cancer was back, I am not going to treat.  Not even a mastectomy.

When I think about not fighting anymore, I feel this little piece of me putting on a pair of boxing gloves and getting back into the ring.  An uppercut here, a jab there and a full blown knock-out to my head, which has so many tumors in it my ears, ring constantly.  I have had tinnitus for over 24 years.  I’m used to it so it’s not maddening anymore.   Unless it gets so loud I can’t hear.   My ears, my eyes, my legs and all that is inside of me scream for release.  But my soul screams “No, not yet”   Maybe it’s just fear of the unknown.  Or fear of the known, but forgotten.  I do so wish I could remember what came before this.

Yesterday, I took my car in for emissions testing.  I timed it based on what I heard years ago about how to avoid long lines.  So I went after lunch time and at the beginning of the month.  The whole thing took 15 minutes….no lines and I passed.  I was worried because I so seldom drive it I thought there would be a problem.   I was so overjoyed that I got it done (I had been struggling with whether or not I should even keep it but I’m not emotionally ready to let it go) that I high-fived myself when I got home.  Really.   Little victories.

Tuesday, March 4, 2014

Open Heart

I have been reading and thinking about soul survival, life after life and reincarnation.   So I’m reading and re-reading a stack of books on the topic.  In doing so, I have been pondering three separate events that were past life experiences (I think).  One was spontaneous and no imagery was used.  The other two were guided, though one of those was a group thing.  I want to emphasize that all these experiences happened years before I became dependent on opioids for pain control.  If anything, those medications stopped the process and I miss it terribly.   They have been happening since I was very young; I just didn’t appreciate it until they were gone.  These three are just a sampling of things I have experienced (as mentioned earlier)


This happened about 1988 or so.  A friend asked me to accompany her to a past life seminar given by a local woman.  I was skeptical beyond measure, and went with a kind of eye rolling acceptance which really isn’t very supportive but hey, I was young.  The leader had this crystal bowl and a crystal wand which she ran along the inside of the bowl.  The sound was the same as when you dip your finger in water and run it along the rim of a crystal glass.  Eerie sounding.  While she did this, she chanted a bit and then instructed us to go down a path, find somewhere comfortable to sit and then the rest I don’t recall.

I don’t recall because I had gone into some kind of trance.  I saw myself as a little boy in the desert.  I looked up and saw a stern looking man on a camel staring down at me, somewhat annoyed.  I must have been about five years old.  After a minute, a huge black spider crawled up my leg, bit me, and I “died”.  When I came to, people all around me were asking if I was okay.  I had no idea why they were concerned, but apparently, I had been making quite a bit of noise.   I laughed it off and frankly, didn’t even remember the incident I just relayed until months later. 

Okay, here’s the deal and this is where is gets “hairs on the back of your head standing up”   My whole life I have been TERRIFIED of any spider, big or small.  I actually had been known to leave my bedroom and sleep in the living room if I spotted one in there.  Once, I woke up my roommate’s boyfriend to kill one that was in the bathroom.   A phobia times 100.  About three months after the “regression” I noticed a spider crawling around and I bent down, scooped it into a cup a let it out.  I stopped in my tracks, realizing I had been doing this for a while now.  I could not figure what changed so rapidly and abruptly.   Then I remembered the regression.  And for the first time since it happened, I remembered the details.

Phobia cures?  Past life?  Who knows.  But it’s something to consider.


This was a spontaneous experience and not a result of regression or meditation or hypnosis.   And again, it happened a good 18 years before I was taking any medication and nothing recreationally.

I was in a health club working out.  I was there early because I worked there too and it was just the staff before we opened.  I had finished up and went into the steam room, where I had gone many times before.  I was sitting in there alone, quietly, not thinking of anything when suddenly out of nowhere panic hit me like a freight train.  I FELT and SAW dozens of naked bodies around me and we were all gasping for air.  The steam was suddenly gas and I knew I was about to die.  Frantically, I groped my way to the door, got it open and still gasping, slid to the floor.

A few people were walking past and stopped to make sure I was okay.  After a few moments I was, and even went back into the steam room because I knew if I didn’t, I’d have the start of another phobia.

What was that?  I don’t know.  And I know that as a Jew, stories of the Holocaust were plentiful and it could have easily been the product of a memory of a story.  But I don’t think so.  I think it was a memory of an experience.


This was an actual guided regression and happened when I was first beginning to take medication.  But I was not “high” from the drugs.  In fact, those who take opioids for pain don’t experience the high that addicts do.  If they are lucky, they experience a lessening of the pain.

My memory of this experience isn’t as clear as the other two so I hesitate to use it as an example.  But my therapist has reminded me of it from time to time and her memories of my experience, her notes, and what I expressed remain clear with her. 

I saw myself as a little girl in a small, weathered wood house in a rural area.  My dad was trying desperately to save the family from bad men, who turned out to be Nazis.  He failed, and I was taken away.  I don’t recall much after that.  Again, the Nazi theme may be due to my Jewish heritage; on the other hand, from what I’ve been reading, it sounds like patterns are repeated in each life we live, assuming we live more than one.  And I respect those who don’t buy that.   On the other hand, it would make sense that my previous deaths have been violent, my lives troubling and challenging physically.

I want this circus to be over.  Grant it, most people live their lives challenged in some way.  In fact, I think those challenges are necessary for spiritual growth.   There is this Chinese proverb (I think its Chinese) that goes: “May you have an easy life” and it’s considered a curse.

It’s a curse because if your life is too easy, if you don’t have challenges, you don’t grow spiritually.  Or rather, you don’t have the OPPORTUITY to grow spiritually.  The more we resist our challenges, the more they persist, and the less we grow.  

So be grateful for your challenges and take the opportunity to learn from them.

Of course, upset and anger is always yapping around my feet like a small dog on a tear.  And when the pain is really bad, the dog is always hanging around.

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.

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