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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.
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