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Tuesday, December 31, 2013

Oliver's Passing

I had to put Oliver down this morning.  He got sick very suddenly and I took him to the vet yesterday.  He had sudden abdominal pain.  Didn’t eat or drink for 24 hours.  They could have kept him for a few days (but that would have stressed him out) to do diagnostics, but she was quoting thousands of dollars just to find out what was wrong, let alone treat.  If he were younger, I may have considered it.  But he was 19.  He didn't come out from under the bad for 24 hours and was whimpering even with pain medication.       I lost two friends since April.  Ted and Oliver.  He had been curling up next to my ear for the last several days, purring in my ear.  He was trying to tell me something...he had lost weight and was dehydrated.  I feel awful for not seeing it sooner.
 I’m re-posting this is his honor.

Oliver's Outing

I named Oliver, my cat, for Joe Oliver, who played short-stop for the Seattle Mariners one season.  I was told later to never name your pets after players due to the fickle factor. Better to name them for a ballpark.  I don’t know, maybe it’s just me, but Safeco seemed undignified for him and every other animal on the planet, domesticated or otherwise.  I’m not even sure if Safeco is a good name for a ballpark.  At any rate, since Oliver was also a famous orphan, I figured the name suited him.  I rescued him from an animal shelter after he had been caught roaming Bell Town, a distinctly unwise part of town to roam for cat and human alike.

We fell in love instantly.  He, with his sleek gray/black tiger-like markings, loving disposition, emerald green eyes, and me, with my bowl of food.  Don’t let him fool you. In spite of his tough-guy look, he is no longer one to trip the light fantastic.  And since we now are best buddies, I would naturally know if something were wrong.  You know, little things only a mom would notice, like pee on the bathroom floor. It happens very infrequently, but since male cats can die soon after becoming ill with a urinary tract infection, I brought him in for a checkup just to be sure, and $80 later found out that he was fine. They put him back in his carrier, which was just one of those cheap cardboard jobs.  However, if put together correctly, they work just fine.  At least, it had always worked for me.

Well, it wasn’t put together correctly, which I didn’t notice until the unthinkable happen.  I walked outside, opened my car door, and bam!  He broke out of the side of the box and made a mad dash under my car.   Heart racing, I ran into the clinic yelling for help.  More concerned about me than the cat, three people immediately responded and at that point, Oliver was still within catching distance.  But not for long.

Realizing he was being chased, he darted around the corner and down (luckily) the quieter of two streets.  The main street would have killed him instantly.  He continued to foil all of us, and eventually ran into a someone’s wooded backyard which was full of all sorts of places a cat could hide in fear or have a good time, depending on the kitty’s point of view.  There was a reflecting pond, plenty of foliage, shrubbery, trees, fencing and little statuettes.  Behind their property, there were more trees, more houses with more shrubbery.  Mother nature was everywhere — paradise compared to the little apartment I live in with just a few trees to gaze at from the top of my couch.  Heck, I wanted to live there.

I figured he had found Nirvana.  I figured I would never see him again.  I figured I would throw a rock through the window of the vet clinic at 3 the next morning for not securing his carrier.  Man, I was stressing, screaming at all the people from the clinic, telling them it was their fault.  I had gone mad. 

Luckily, the people who lived in the house where Oliver ran were the nicest people on Earth.  They let me hang out at their house for many hours that evening, and 13 hours the next day.  Carol, the woman of the house, brought food and water out to me and let me join the family for dinner that first night.  She crouched behind fences and darted through the woods as if it were her own dog, Stanley, who was missing.  In fact, she kept Stanley, a bulldog, in the house the whole next day which couldn’t have been easy for Stanley. 

My spinal tumors and subsequent pain make traipsing through the woods unwise, so I spent most of the time just laying flat on a little patch of lawn, bits of kibble on my chest, calling plaintively for the elusive Oliver.    I caught a glimpse of him early the next morning and was within grabbing distance, but he would have none of it.  Later that day, he was literally eating out of my hand but was still fairly freaked and wouldn’t let me touch him.  I cried. Hard. I sobbed, screamed, cursed and generally bawled  myself to sleep that night. 

I got up at 4 a.m. the next day and a very, very dedicated friend picked me up at 4:30 to go back to the scene of the crime.  The people at the vet had recommended I come at dawn, stating with authority that he would come only to me. The night before, they suggested I leave my T-shirt (luckily, I had a sweatshirt on over it) with my scent and he would come for sure.  They pretty much kept telling me he would come.  He didn’t come. In fact, after two hours that pre-dawn day I hadn’t spotted him at all, and left for home, dejected, sad and exhausted, saying a prayer and leaving an offering of a chewed-up, soggy, cat-nip filled mouse.  Earlier, the people at the vet clinic put up signs everywhere, and brought over protective gloves for me to wear once I found him, warning me not to let Oliver see them or he’d get scared.  Hello?  Who am I, Doug Henning? 

Finally, around 5 p.m. the third day, just when I had mentally let him go, sending a prayer that he’d be safe, the vet called telling me he had been found by a neighbor.  It had been over 48 hours, and Christina, the neighbor was able to cage him.  I figured he was so exhausted, he didn’t care who caught him. I was glad I had spent so much time introducing myself to everyone in the neighborhood and basically being a pest.  EVERYONE knew who he was by the time he was caught.  He was exhausted, dehydrated, wheezing, but basically okay and I think, happy to be home.  But that’s my point of view.  Of course, by the look he was giving me, I could only assume he had thoughts of his own:

Where have you been, you idiot?  Man, there I was, minding my own business, when suddenly I was scooped up and thrown into a cardboard box posing as a cat carrier.  And all because I peed on the bathroom floor instead of my litter box.  At least it was in the bathroom  Geeze, you’d think I had threatened you with an Uzi.  But no, you totally freak out and decide I need medical attention, taking me to this stranger who stuck something up me to extract urine and test it for who knows what.  It hurt.  I only weigh 12 pounds.   I am tiny and I was scared.  I meowed really loud to let you know but you didn’t care, you just let those mean people do their thing. 

And then they didn’t even close my carrier (if you could call a cardboard box a carrier) correctly and you were too stupid and too trusting not to double check so of course, I did whatever any red-blooded kitty would do.  I bolted in fear.  I didn’t know what I was doing, I was in survival mode.  I ran and four people, one with a net, came chasing after me. What would you do if someone with a white coat and a net came chasing after you? 

I ran into all these trees behind some strangers lawn.  It was real pretty back there, but very scary.  There were crows, squirrels, strange cats and all sorts of other unknown creatures.  I ran up a tree and stayed there late into the night, until the coast was clear.  I came out and no one was around, so I skulked around looking for food and water. I was really scared, hungry and thirsty.  And you, my owner, the person who supposedly loves me, apparently went home for the night. What the heck, you could always get another cat.  Me, on the other hand, could only hope to be found by someone who would take pity on me, feed me, and with any luck, take me in. 

Incidentally, the water in that stupid reflecting pool you think is so pretty is filthy.  I would never in a zillion years drink out of it.  If I did, I’d probably get parasites.. But hey, don’t worry about me.  My toys were no where to be found, my litter box gone too.  I had to poop and pee in the great outdoors, but I was so scared, I could hardly go. I realized I  was now thoroughly domesticated.  How embarrassing.  You finally came back the next day and chased me with some other strange woman, and now I was really freaked. 

You were acting like a nut, crying and screaming, sobbing and calling my name.  I figured you had lost your mind, and was trying to decide if maybe life wouldn’t be better away from your craziness.  But, I missed my food, my clean water, my warm sleeping place and my litter box.  Still, you were freaking me out, so I hid a second day, till finally I was so tired, hungry and thirsty, I dragged my ragged and beaten body up on a nice lady’s porch and she put me in a carrier and took me back to the vet, where you finally showed up.  Geeze, what was the big deal? 

Can’t a guy go on vacation for a couple of days?  Okay, okay,  once I was home I got brave.  I never want to go through that again.  Of course, minutes after I was safe at home I cried at the screen door to go out.  I can’t help it, my brain is the size of a filbert. Humans are the ones who wanted us for household pets.  We don’t know how to survive out there anymore, and it’s your fault.  Now I still can’t pee right.  I’m afraid of my litter box.  But I figure if I act a little crazy you will worry about me, give me special treats, and I can stretch this out for a long time. You are so easy to manipulate it’s frightening.  I have always wanted to see Egypt, the birthplace of my ancestors.  Maybe I’ll go there next time.  Anyone know where I can get a cheap flight?

Stray Cat Strut

Saturday, December 28, 2013


My body is a playground for the pain today.  It’s bouncing up and down my legs and has turned me into a backyard trampoline.  Oh well.  I was reading this article online at CNN about people who have overcome challenges and found their calling.  One of the people was Noah Levine, who is the son of one of my favorite writers on meditation, Stephen Levine.

Another featured participant was this woman whose calling is communicating with the other side.  She makes 1,000 bucks an hour helping people.   I don’t deny her a living, but something about it makes me think “charlatan” even though she might be perfectly legitimate.  There are so many of the “take the money and run” kind of authors on this subject, I guess I feel mad and a bit jealous because before I started taking all this crap for the pain, I could do that as well.  Really.  I’ve written about it here…”My First Encounter” I think was the name of it.  I have that search engine on my site but I used it to find something the other day and the thing I was looking for didn’t pop up.

At any rate, I still can do it just for myself; I communicate regularly with people who have passed.  Not as actually voices, just as thoughts that belong to them.  And no, I’m not crazy.  They aren’t actual voices and no one tells me to hurt myself or anyone else.  In fact, if anything, they keep me grounded.   That’s not to say I’m not challenged, for I am, big time.  I just peek into the abyss and occasionally sit at its edge, feet tangling inside as I peer down.  But I’m not jumping.  Not yet.

My nephew was just here and showed me great pics that he took in Belize with his parents and sister.  I want a virtual reality headset so I can visit all these places…as well as Paris, Rome, etc.  Sigh.  Perhaps it will be available before I check out.

But not today.  A friend called but I’m in too much pain to have anyone else over today.   I hate saying no to people, but I’m normally not much fun….today I’m really wiped.   And the backs of my knees feel like knives are stuck in them.

Back to breathing…one second at a time…no past, no future, just now, now and now.

Monday, December 23, 2013

Still Here

My gastrointestinal problems have resurfaced with a vengeance.  It had settled for a while; but apparently, I have been eating too much, which my normal standards, is not enough.  But my belly can’t handle too much of anything.  I’m also in a fair amount of pain today.  And I can’t believe its Christmas the day after tomorrow.  I miss talking to Ted.  It’s been nine months since he passed and I still think about him a lot.  We shared so much; our pain, our challenges, our stories….sometimes with a heavy heart, sometimes laughing ourselves sick at our situation.   I’m glad his trial is over.  He hated this time of year.

What can I write that I haven’t already?   The abyss starts to close in and panic ensues. I need to find a way to stave it off.  How to walk away from it instead of around it.  How to find peace where none exists.  It’s a challenge.  Mornings are the hardest, especially this time of year.  Our shortest, darkest day just passed, but it will be a while before there is more light than dark during the day.  Living in this dark, wet, dreary climate isn’t the best of choices, but I’m not going anywhere at this stage.

Anyway…..Happy Holidays to you all…

Wednesday, December 18, 2013

Bumps of Beauty

I decided to re post this after reading an article about a young woman in Nova Scotia, Canada with NF.  She had a facial reconstruction and it will be on a station that I unfortunately, do not get.  I searched in my own blog for this post and could not find it, so I'm re posting it in her honor.  Sarah, you go girl!! (she bravely made an online video of the bullying she endures)

Bumps of Beauty

Airbrushed beauty beaming up from the pages of magazines and down at us from billboards marching proudly on our city streets, brightly lit at night so that we won’t miss the larger-than-life smiles filled with too-white teeth, straight as the light bulbs that shine on them, the abundant, radiant hair that glimmers too, the creamy white, black or brown skin flawless and blemish-free even though we know it’s not true, we believe it so we buy the soap, the toothpaste, the clothes and once upon a time, the cigarettes but that’s all over why is there not a law against the rest of it?  We know it’s not true, because we see each other on the streets, in the workplace and at school every day and we see the imperfections we are all born with save the few who make it to the pages of those magazines who still, even with the born perfections, must have more perfection airbrushed into the lines and creases to make sure that perfection doesn’t get by us mere mortals.

We know it’s not true, as we stare into the plate-glass windows of the stores that hold our fondest wishes; the things we covet and believe we can’t live without yet behold!  We still live. The things just out of reach but will never be ours and even if we get them they somehow leave us feeling empty which should be a lesson.  As small children we played in and around the boxes that held the toys rather than with the toys themselves but then of course, we got older and that wasn’t enough and the airbrushed bodies that hold the goodies we now want but most times cannot have start to look good, so we begin to covet them and continue to do so forever unless we learn it’s not true, oh my.

We know it’s not true when we are born with the most imperfect bodies even more imperfect than the normal overweight, blemished, lopsided smile, crooked-nosed, large-jawed, legs to short, arms too long, hair not right, neck to long, butt to big human being.  And here we are, with bumps that cover our bodies in numbers too many to count that send us into the shadows in shame or to the operating table alongside the ones with the tumors inside, large and small that run up and down our legs and arms, in our chests, our organs or crawl up our spines leaving us in mind-numbing pain or confined to our wheelchairs or beds far away from the billboards of beauty.  But it’s okay, because we know it’s not true.

And if that’s not enough there are those who can’t walk, can’t see, can’t hear but miraculously, somehow, overcome all those obstacles and emerge more whole than the airbrushed beauties the smart ones know to ignore.

What a miracle it is to be born whole and how unlikely is it, really, for that to happen given all that could go wrong in the cell dividing process of becoming human.  The culprit, thanks to science is identified in genes 17 and 22 on that ladder of life, DNA.  That twisting, turning  Escher-like double helix , the tell-tale spell binding truth of who we are, what we are likely to become. 

We wait for the time-bomb of our NF to go off; will it be soon, while we are young? or will it skulk around in our bodies, dashing about or hiding behind organs, tissues, nerve-endings, tiny, meaningless until — until something, who knows what, ticks it off and poof! they grow, these tumors, these parasites, pushing about like bullies on the playground, growing faster, bigger then the rest of whatever else is in there and soon, like the bully, it pushes on the nerve-endings too much and the host body is racked with pain as the doctors scratch their collective heads wondering what in the world is wrong, have you seen a psychiatrist?  An MRI? Well, okay and we slide into the cigar-like tube with earplugs to dull the sound of the thud-thud-thudding and the cluck-cluck-clucking like the coconuts used to make the sound of horses running in  Monty Python’s Flying Circus. I laughed so hard in the first of my 30 or so MRI's that they had to stop and start again but it turned out not be funny at all. 

So my first surgery was at 40 which is late, so I’m told and according to that first MRI at age 36 when there were so many tumors one neurologist who didn’t know me assumed I was in a nursing home but was, miraculously, living my life just fine thank you. So this was quite the shock to learn that I could be paralyzed from the neck down if I didn’t have the surgery and maybe even if I did.  It all depended on if the tumor was sitting there like a grape or wrapped around the nerves (which wouldn’t be good) but it was like a grape and I am not paralyzed though sometimes with fear, I am.

 So now it’s back, the pain though this time in my lumbar spine and the pills I am on to stop the pain could put out my entire apartment complex though my body has become accustom to them and they practically don’t work, which means trying different pills oh heavens this is too much I just want to be normal, whatever the heck that is.

Somewhere in our hearts we know it’s not true, all the hubbub at the Oscars, the Emmys the Grammy’s, all that glitter and perfection all gathered together so we can gawk and wish we were there, or them or both.  If this NF of ours teaches us anything it should teach us that it is not true; not the billboards, magazines, movies, television, awards — none of it.  None of it is true.  We are true.  We with our imperfections, our bumps, our tumors, our disfigurements teach us this truth.  We are the truth because one must search deeper to find our beauty and any treasure hunter will tell you that the find  makes the dig worth it.

Monday, December 16, 2013

Patch Me If You Can

I haven’t slept at all for two nights.   Don’t know why.  And yesterday was horrible pain wise….and this has never happened, but I had it in my head my patch day was Sunday, but it was Saturday.  I went five hours past the time I was supposed to change it.  Boy, I found out the hard way what happens when you don’t change it on time.  I have all these safeguards in so that won’t happen, and it never has; I write it down, I put the patch in the bathroom the night before….but somehow, I missed it all.  I’ll have to now program a reminder in my computer so it pops up. 

In the meantime, my left eye is twitching, my hip is throbbing, my stomach is growling and my head is spinning.  It’s very entertaining: twitching, throbbing, growling and spinning.  A real carnival on the couch.  I almost got up in the middle of the night to write something that was on my mind but I wanted to give sleep a chance.  And now, of course, I have no clue as to what it was that seemed so important at 3 a.m.   Reminds me of the time when I smoked weed recreationally and we always thought we had such profound thoughts….then we’d write them down and in the morning, what we thought was so insightful were musings about the color orange. Oh well.

I actually attempted to do something I’ve always wanted to do when the pain reaches the stratosphere.  And that is, separate my body from my mind to see if the pain lessens.  It worked a tiny bit, but forgetting to put on a new patch for just over five hours probably was the reason it didn’t work very well.  I will attempt it again when it gets bad.  It’s scary for me to do because I sometimes fear I won’t be able to get back.  But the drumming exercise works because the drumbeat changes at the end of 30 minutes and draws you back.

That experience of forgetting was frightening because of how quickly I started going into withdrawal.  I will NEVER be able to get off this merry go round.

Saturday, December 7, 2013


I’ve had a much needed and blessedly appreciated break from the non-stop pain…it’s actually been about a 5 or 6 on the 1-10 scale for about four days…that’s a record, I assure you.  Even though the temp outside is below freezing (very, very rare for Seattle but then, the rest of the country is experiencing weather-related horrors as well) the sun has been out and high pressure outside means less pressure in my body.  I know, I know, why not live somewhere sunny?   Well first, even when the sun was out this summer it was also humid so I still was in pain.  And dry climate or not, I want to be where I am.

So when this happens, I start to really lie still and pay attention to my body; where does it hurt, what is the intensity, what changed to make it better or worse, etc.  Stress obviously makes things worse.  And my M, W, F caregiver quit on me Monday.  She said she’d stay until they found someone else, and they did, right away.  It wasn’t personal; it was family issues.  She had a bit of an angry aura about her and I questioned whether I wanted her around, so I guess it always turns out the way it’s supposed to, right?  So whether I am aware of it or not, stress pays a huge factor in the pain game.  And knowing they are planning on lowering my dosage is very stressful

But I also wonder about my interpretation of the pain.  When it’s tolerable I try to really feel how it feels so that I can compare it when it’s zipping passed 10 on the pain scale.  But when it is zipping passed 10, I’m in no mood and have no ability to compare or even remember what it felt like before it went into the war zone.  So it’s tough.  The only thing I can do, the only thing any of us can do, is live in the moment.  And that’s tough when the moment is filled with burning pain.

Like the rest of the country, it’s very cold (way below freezing) here right now.  Seattle isn’t used to this kind of cold.  My car won’t start much of the time and I’m going to have to get out there and start it again.  And my poor hummingbirds; their feeder was frozen solid so I brought it in and warmed it up then changed the water. That was two hours ago and the top half is frozen again.  The sun might warm it up a bit, I hope.  

Friday, November 29, 2013

This is Spinal Crap

My dad, brother, sister-in-law and niece came over today with leftovers from Thanksgiving.  My dad is a very brave man; he has spinal stenosis and is in the same kind of pain I am in yet he manages to get over here if he has the chance.  Of course, he can sit and I can’t….we were all talking and I started crying and said I didn’t know how much more of this I can take and felt horrible for saying it in front of him.  He came up with “Spinal Crap” and we all had a good laugh .  Old movie “This is Spinal Tap”.

I took a few moments with everyone and went over my DNR.  I hated doing it in front of my dad, but I wanted Francine (my sister in law) to just take a look at it as well as my brother and there is just so little time.  I want to send it back to the doctor to sign and send me an original.  I wrote a short note to the doctor and nurse about it as well, so they could see I understand what I signed.  I also made it clear to them that I am not considering suicide.

My nephew called shortly after they left but I put his visit on hold.  Hopefully, he’ll be able to get here tomorrow; after that, he goes back to school.  Then a friend called and offered to drop by.  I took a pass on that as well.  When the pain is in the stratosphere, I cannot enjoy the people I love.  It used to be a distraction at least, but not right now and maybe never again.  I mean, this stuff doesn’t get better.

Then, after they left, I watched an episode of “Bones” on Netflix.  It happened to be the one with the NF information and tiny story line.  I cried my eyes out.  My stomach has been awful; I have no appetite (again) and I am forcing myself to eat something, anything, to get the juices going again.  But if I want out, why am I doing this?   Well, my heart may be in heaven but my soul isn’t finished, I guess.  No wonder I feel confused, betrayed, frightened and sick.   My heart and head are in one place, my body in another, and my soul?  Who knows.  Driving me crazy, mostly.

Sunday, November 24, 2013

Who Am I Today?

I have this fantasy about who I am.  In my head, I see myself as someone who can take anything thrown at her, but in truth, I am not.

In my head, I see myself as someone who doesn’t complain about the myriad of health issues I face, the main one being pain; but in truth, I do.

In my head, I don’t tell friends and family about those challenges but just suck it all up; but in truth, I tell.

In my head, I take each day as it comes and not worry about tomorrow; but in truth, there is a wide gap between me and Ram Daas.

A dear friend just took me to the store.  The pain was bad and we were coming up to a green arrow and I was afraid it would turn yellow and force us to stop.  It was a long light and sitting is horrendous for me so I said “go, go, go” and she got mad and I don’t blame her.  She said I could give her directions if she needed them but not that kind.  She said she remembered telling her dad the same thing.  Great.  Now I’m not just a bitch, I’m an old bitch.   But she was right.

I used to have the same conversations with Pam…I don’t do that anymore (usually) with the new helpers.  It really doesn’t matter how much pain I’m in.  They have to drive safely.  But I’m inside so much I forget what it’s like to be out in the world. My patience is nonexistent and it’s just too bad.  But taking it out on everyone isn’t the answer.

Of course, all these feelings come and go and change with the weather and my level of pain.  The trick is staying in the moment, remembering the Serenity Prayer and praying for other.  The trick is meditation, BioLateral music, my healer, healthy eating and a bunch of other stuff I slip in and out of.  The trick is remembering the tricks.

At the moment, I think my anxiety is about my lowered dosage which will start in January.  Gotta stop worrying about what may or may not happen come January.  And just leaving it alone with my pain doctor until it’s time for the next battle.   Need to rest up for that!

Saturday, November 23, 2013


I’ve been reading my DNR (do not Resuscitate ) papers that my pain doc finally sent to me.  I am not happy with the box he checked (I want comfort care only and my family knows it...he checked the one that includes breathing apparatus). I understand that he feels culpable if I should take my life, but I’m not going to do that BUT I am also through fighting.   I wrote him and his nurse a letter explaining and he may make me get it from my primary care doctor.   I just know I want it.

I don’t want to be a wuss but enough is enough.  People call me “strong” but I’m not anymore.  I keep winning battles but let’s face it; none of us will win the war.  What is the big deal about this anyway?  We treat ANIMALS with more respect.  We don’t give them some pain medication that doesn’t work, stick them in a shelter and force them to live their lives until their bodies give out.  It’s cruel, unnecessary and should not be an issue.

After all, I am not talking about euthanasia, though I am not sure how long I’ll want to live once they lower my pain meds.  They told me it “wasn’t good” for me to be on them for long periods of time.  A month ago they wanted to raise them and that was too much.  Then the nurse balls me out for not taking “enough” of my breakthrough meds. Now they lowered them as well.

I feel like I’m losing my mind.  They are generally supportive and gentle, but this constant change of attitude about what they want to do is miserable to deal with.  I do not want to start with a new pain doc, and I have to tread lightly or they will tell me to go somewhere else.  It is beyond maddening.

I mean, as far as the DNR goes, my letter to them (not needed for a DNR, I just wrote one) states all my health challenges from the pain to the gastrointestinal issues, to my eyes going on me, my hearing loss, the HUGE tumors in my legs and arms, the anxiety, depression and everything else….I want to wave the white flag which in my case, is the DNR.

And don't even get me started on the continued fallout from having my meds stolen.  I'm sure that's part of this, though they swear its not.

Sorry I've not been my usual one day at a time kinda gal.  Doing my best....friends, family, roof over my head....I am thankful for all these things, believe me.  Staying away from the news has been a challenge though.  Makes me grateful, fills me with fear.  Sigh.

Friday, November 15, 2013

New Development?

Lately, I have been sleeping very poorly.  Then, last night, or should I say, the “witching hour” I woke up at 3 and stayed awake….and in horrific pain.  I even took my breakthrough pill at 3.  I was going to take two, but since the pain clinic decided I need less, not more, I didn’t do that.  In the beginning the limit was 6 a day, which I never reached.  Now that I need, they want me to take 4.  I know they are worried about my weight, but hell, I could probably swallow the bottle and still not get relief that theory will not, however, be tested.   If I ended up brain dead instead of dead dead, my family knows I have a DNR, no extreme measures, etc., but still.  I will not put them through that.  I almost got up to write this, but wanted to give sleep a fair shake.

I managed to meditate a little which did help, but no sleep.  If I’m repeating myself, just ignore it.  I probably do that anyway!!  No blaming lack of sleep for those senior moments.   So I decided yesterday to write a “Day in the Life for One Woman in Chronic Pain”  and put it in the pages section.  I have to listen to my BioLateral music while doing this.  I don’t hold much back.  It’s longish, so it’s under “Pages” instead of posts.  You’ll find that on the right side of my blog if you’ve never been there.

Monday, November 11, 2013

Letting It Go

I had written another entry but it was so negative I got depressed reading it again (I always wait a day before posting) so I’m trying again.  Truth be told, I am in a world of hurt.  Lying down doesn’t even help anymore.  I’m in pain, scared and worried about what the future holds.  I am really worried about them lowering my pain medication.  That will start when I’m done with the few patches I have left.  I know they are worried about me being on this dose long term, especially with my weight being what it is.  You’d think it would work better since I’m so thin.  No such luck.

I know I’ve often written that pain and suffering are two different things, pain being something the body just does, suffering being our interpretation of that pain.  And I think about the people worse off than me and give thanks for what I have.   But that doesn’t seem to be working much anymore.  And the stress of what happened with Pam, plus the fact that they are decreasing my meds and I’m completely freaked out isn’t helping my pain levels.  I try and let go and release the tension and I’m usually good at doing that but not today.

I am listening to my BioLateral tape while I write this.  I’ve taken as much as I can take for a while, pain wise and it does no good anyway.  Once the dosage is lowered I may as well move into an opium den.  I’m not kidding.  My legs are killing me and I have barely been off the couch all weekend.  So I forced myself to run to Trader Joe’s with Barbara this morning.  I’m glad I did just for the getting out of the house part, but I’m flat out again.  I did eat a little soup and a bit of stir fry from last night.   Baby steps.  I AM SUCH A DRAG.  I have zero idea why I have the friends I have.  Seriously.  I mean, when they visit I try to be upbeat but there isn’t much to do except watch a movie.  It’s not like they climbed a mountain to see the Buddha.


Barbara, one of my new helpers just left.  She really cleans well and is kind hearted but not intrusive.   I enjoy our conversations and she knows when I’m not up for them.  And I make sure she’s up for it if I’m feeling chatty.  Oliver is trying to will me to give him another treat.  Will away, my love.  Mama’s down today.  He is especially cuddly.  G-d, thank you for sending me Oliver.  The best of the best.  I hope his extra cuddling up to my neck isn’t a goodbye.  He’s been doing it a lot lately.

And you know what?  I think of Pam, I pray for Pam, and I seriously hope she gets help and finds some peace.

Sunday, November 3, 2013

Yellow Bird

I’m lying here (what else?) thinking about all the years gone by, all the pain that never ceases and am thinking about everything from my almost 19 year old cat, Oliver (who at present is screaming for treats but will not get them because I’m in horrific pain, I’m alone, and jumping up every 10 minutes is exhausting), to what happened with Pam.   I heard back from the Officer who took the information and he told me she has to go into treatment and stay clean a year and the charge would be dropped.  I asked if it was okay just to call and speak with her.  No contact in person, but a call would be fine.

We spoke for just a few minutes and she told me she was actually seeing it as a turning point and a wakeup call.  She said she understood why I had to do it and that she had left me with no choice.  I told her my angst over it that first weekend actually stopped once I turned my prayers away from me and on to her.  She cried. I cried.  And we said our good-byes over the phone, promising to get in touch again in a year.  I hope she succeeds.

I’ve been having a very difficult time lately and thus have not been writing much.  The pain has been horrific, and Tuesday I have to get to the doctors, a 40 minute drive each way.  The new person got permission from the supervisor to take me there (it’s in the next county so a no no) after I spoke to her and said Pam was the reason I had to go.  Which is true; they scheduled it based on how much they thought I was taking and when I told them what had happened they still want me to come in.  My next scheduled appointment will be a different challenge, but that won’t be for another six months.  By then I may have someone new willing to do it without needing permission.  Usually when I offer to pay for the extra gas they agree but this woman, Elaine, would not.  That’s okay; she has integrity, which matters to me a lot.

The emergency replacement worker was a doll.  She is originally from Sri Lanka but is married to an American and has lived her over 20 years.  She was a nonstop chatterbox, her cell didn’t stop ringing though she didn’t answer it, and she had all sorts of dietary suggestions.   I told her to email them to me since she isn’t going to be my regular.  So I have Elaine on T, TH and someone I have not yet met, Barbara, M, W, F.  I am going to have to be careful scheduling appointments based on their work schedule.

Lots of changed which equal stress which equals pain.  I always think I’m doing well when I’m not.  But two friends came over last weekend; one on Saturday and one on Sunday.  I watched “The Sapphires” which I highly recommend…about an aboriginal singing group from down under that were never famous but they sang all over for the USO during Viet Nam.  They only sang music that was popular then, but the beginning of the movie you hear them singing songs like “Yellow Bird”   Amazing.

Tuesday, October 29, 2013


Just a quick note to let everyone know I did report Pam to her boss, my doctor and the police.  I felt pretty bad about it, but they betrayal helped me stay focused on what I had to do.    It's been an awful few days and I'll write more later.  BTW, I was left with no choice.  My docs needed to know I wasn't taking that many and they already won't let me have my full supply anymore.  Perhaps I can talk them into not doing that since they now know I'm not taking them and forgetting about it.  It was a real mess.  But I have been praying for her to heal and you do the same.....if you want to.

Sunday, October 27, 2013

Another Cautionary Tale

Nothing is ever certain in life.  No one knows that better than those who, for no fault of their own, have medical problems that are unsolvable to date.  And those who live in chronic, intractable pain due to their disease or disorder must depend on, and trust, caregivers.  So must those not in pain, but the meds for pain are what everyone wants.  And caregivers are notorious for unpredictable behavior.

I thought I was the most blessed of those who need help.  Sure, Pam could be unpredictable in some ways, and yes, she was getting flakier and flakier.  But Friday she admitted to me she was the one taking my meds.  She claimed she only did it a few times, and they are under lock and key so I didn’t get it.  But I always have a dozen or so in my purse.  Which is always with me.  Except, a friend said, when you are in the bathroom.  Which is often.  I told her to leave, we were both crying, and all weekend she has been phoning and leaving notes on my door.   When you do that to someone, the trust is broken beyond repair.  And she doesn’t get it.  She wants me to lie to her supervisor and just say I want someone else for personal reasons.  But she has been going through red lights, forgetting things I want at the store (once I only had two things…and I always write it down….she called from the store because she lost the note and my pin number)  and she came back with just ONE of the two things.   So all in all, it’s time for someone new.

But the despair I have been feeling all weekend has been overwhelming.  So has thinking about the work ahead of me, dealing with my doctors who will not be happy (already left the message) and I haven’t a clue what will happen.  And the most important thing is that I will be out completely and not due until Thursday.  My nurse said she wrote a script to tie me over but the pharmacy wouldn’t fill it and won’t until Thursday.  I’ll have her call because I’m in agony as it is.  I don’t care how well you know your caregiver, you must be hyper vigilant all the time.  If not, this is what it will cost you and it's what I wrote to Pam in response to her notes…I haven’t had her in the house since.

·         My pain doctor thinks I am taking more than I realize and therefore, I need to tweak my pain plan.  While the pain has been bad, I am NOT taking as many as I thought (and forgetting).  This loss of pills is why they want to see me next week.

·         They may drop me as a patient

·         My insurance will not fill my order until it’s due, and I now don’t have enough to get me through        If I DO tell them, I have no idea what they will do about it.  I have no desire to prosecute, but they may.  And I MUST tell them because I don’t want them thinking I’m forgetting that I take them…they are changing my pain plan needlessly

·         I no longer trust you.  And I think you took a lot more than you realize because of the sheer number missing (she originally told me I was 80 short so I’m unsure)

·         I now suspect you were in my pills before I started locking them up…again, the trust has been broken.  It doesn’t matter whether I’m right or wrong.  When you look me in the eye and lie, how can I trust you?

·         I don’t want to go through the process of training someone else, but what choice do I have?

·         You could have had a bad reaction to my drug….and if they found morphine in your system, they’d come after me (even if you said you took them…I’d be in trouble for not keeping them locked up…even though I only have a small amount on my person)

Stay strong.  Keep fighting.  DO NOT TAKE YOUR EYES OFF YOUR MEDS regardless of how much you trust someone.  As my pain doc’s nurse always says “They’d kill their own grandmother and lie to your face”

I don’t know if she killed anyone, but she did lie to my face; I asked her point blank on two occasions.  It wasn’t until she heard me crying that she tearfully confessed.  The thing is, I under medicate so that’s why it took all this time to notice.  She claims it only happened one time right after her surgery.  I’d love to believe her.  I unfortunately, do not.  I feel awful, I have been struggling all weekend and praying for direction and strength.   Every single person I spoke with, and I spoke with at least seven, told me I have to tell her boss.  I don't even want to think about what would happen if I don't and she does this to someone else.  The trust is gone.  GONE

Friday, October 25, 2013

Who's on First

I just got off the phone from another frustrating “Medical Who’s on First” conversation.  I had an MRI of my stomach and pelvis about three weeks ago and had sent the results to my pain doc and neurologist.  My pain doc nurse and I had had a conversation about my meds and I mentioned the scan and she told me to send it to her and my neuro.  The next communication with her came when I called to renew my scripts.  She said they won’t look at the MRI unless I’m there so they can get paid.  Fine.  I get that.  I am due anyway, so I made an appointment.   Then I called my neurologist and left a message with the information about how to access the scan that was sent.

Today, after not hearing back all week, I called again and had to start all over They had no idea what I was talking about.  I explained the scan was of my pelvis and stomach and my pain levels changed and I want my doc to look at it.
She asks “so you want to see him about an image of your brain?”  ARE YOU EVEN LISTENING TO ME!  Where in my speaking did I mention coming in with images of my brain????  I told her I was sick and tired of fighting for my life and having conversations like this makes my pain worse and would drive anyone crazy, but when you are in the kind of pain I’m in its intolerable.  Then I asked if she had heard anything I said because the questions you pose don’t match with what I just said.  She started paying attention then.  Telling a health worker, even a receptionist, that you are sick of fighting for your life should be a red flag for them but at least they will call back this time (hopefully)..and tell me to come in….even though I explained how hard it is to come in and I’ll be there next week for the pain doc.  So no, all I want is for him to look at it.  Send me the bill for the five minutes it should take.  AUGGGGHHHHH!!!

I hope the people who are insured through the Affordable Health Care Act (I refuse to us “Obamacare”) get better attention then someone on social security.  When I had private insurance it was different, but it may be for other reasons too (the ill treatment).

No wonder I’ve been out of my mind anxious.  I have to remember to stay in the moment and get “out of my head” which can be challenging.  But when you listen to your heart and stay in the present, the cloud vanishes.  The trick is hanging onto it which is almost impossible to do without years of training.  Although I don’t have formal training, I certainly have life circumstance training.

My healer turned me on to this product called “Deep Blue Rub”   It comes in a few forms, but the rub is what I use.  It’s not cheap, but a little bit goes a long way.  I rub it on my legs and feet and it actually helps with the pain.  I trust her completely; you can only get it through this company called “doTerra”  It’s   They have all sorts of essential oils which she uses on me during treatment.  I ordered one of those as well.  Becoming a member gives you a better price.  

Monday, October 21, 2013


The end of Daylight Savings and the beginning of long days of darkness begins next week.  Seasonal Affective Disorder (SAD) arrives soon after, though I’m pretty much depressed year ‘round.   The good news it, that means I don’t have the disorder!  Hey, I’m trying to make lemonade here.   I’m out of sugar.

The pain is bad today…again.  The neuropathy is really bad.  An NF friend in MN mentioned Emu oil for pain.  It’s a topical and comes in a cream too.  I’m picking some up today.  I see my acupuncturist today.  I hope that helps.  I did sleep well for a few days but then woke up groggy so I halved my sleep medication last night.   Getting up and preparing to do nothing all day is exhausting.  It’s getting harder and harder but as my dad says, you gotta keep pushing yourself.  

Reading is still very difficult for me to do.  I miss it like crazy.  Nothing interests me.  I think all that time waiting for my prescription for my glasses, which still isn’t great, did something to my attention span.  Truth be told, I’m scared silly.  I’m afraid of ending up completely out of control of myself.

I just spoke to my pain nurse.  She had asked me to send my MRI results to them.  That was two weeks ago.  She had given me detailed instructions on how to send it.  Now she said “you aren’t going to like this but we can’t look at them unless we see you.  We have to get paid, that’s just the way it is” So I phoned my neurologist and left a message requesting that he look at them.   I will have to come in for that, I am sure.

She also asked me to count my breakthrough meds….and I’m short again….by 50.  I do not get it.  I need to start writing down each time I put one in my mouth….I swear I rarely take four a day, let alone six.  Something is not right and they’ll cut me off if this keeps up.  I don’t know what else to do.  They are under lock and key, the key being in a separate place from the lockbox.  Then she called back because I had left her two messages, freaked about the missing meds.   She calmed me down and said she was concerned because things have changed a lot for me over the passed few months and she is worried I'm taking more than I think I am, and that perhaps it's time to up the dosage.  Talk about hearing things wrong!

Ah, the life of the chronically ill.  The pain must be really messing with me.  I wish I could just let go.

Tuesday, October 15, 2013

To Pray

The pain is the worst it has been in a while….been creeping up on me and now it’s a full blown assault.   I woke up yesterday with two red spots on my foot and I dismissed them as being the result of the socks I was wearing…but today they have changed a bit and I think now I’m witnessing the overnight appearance of new neurofibromas…they seem to come out of nowhere, like the rainstorms of summer and just as destructive.   Which means there are rainbows if you know where to look.  Sometimes I remember, sometimes…not.

I sent those MRI results to my neurologist and pain doc last week and haven’t heard anything.  It’s transmitted digitally; no snail mail.  Anyway, I’m going with the no news is good news adage.

It’s getting harder and harder to concentrate; to read, to write, to pray.  I think having a few doable days in a row is a blessing and a curse.   I get to a point where I feel I’m accepting my life without complaint (rare) and when I do, I breathe easier.  Then I have the doable days and I’m out in the world to whatever degree I can handle and again am reminded of what I am missing.  But in the gift is the twist.  When I feel better, I take 20 steps backwards in the coping category and end up angry and without skills when the pain comes back…mocking me for having a few creeping moments of “what if I was healed spontaneously?  Pathetic.  The Universe’s joke on me.  Let’s see how long it takes before she starts thinking about miracles. 

To that I say, if there is to be a miracle, let it be for someone younger than me, someone who still has a long life ahead of them.   Someone who has been fighting the good fight.  Someone who perhaps doesn’t have family support or financial resources to get the help he/she may need.  I’m not writing that to get a pat on the back from anyone in the world or the next.  I just want to go Home, so in a way, it’s selfish.

I did make it to Whole Foods on Friday last week.  Haven’t been there for ages but was hungry for something yummy.  I wanted to make a return trip today, but alas, that will have to wait.  I’m hoping for tomorrow!!  My sister got me hooked quite recently on their brand of chocolate chip cookies, 18 to a bag.  Then I got some delicious deli “California Quinoa” which is their particular concoction of the grain.  I just read the ingredients on the back and will one day make it myself.  I make quinoa all the time anyway….thinking of warmer recipes these days!

Tuesday, October 8, 2013

Worst Fear

My worst fear, I think, is coming back into another life back here on the once beautiful planet which we systematically destroyed over centuries of abuse.  We just don’t get it.  America is the joke of the Universe.  A good, no great idea that turned into an unfunny joke.  I think I have been wanting out for so long, wanting the pain gone, wanting to be either fully engaged with life or to move on.  Move on into a hopefully better place where there is no pain, no bickering between people and no power hungry control freaks who would rather be “right” than to be human.

Anyway, my GI doc had me do an ultrasound two weeks ago and today I had to do an MRI because the transvaginal exam was not going to happen….too many tumors…it would hurt like hell (it hurts most of the time on its own) and they’d probably damage something.  I went with my gut.   So I go for the MRI and THREE PEOPLE tried the IV for the contrast dye and none of them could get the needle in my vein….I was dehydrated because they told me not to eat or drink anything for 7 hours before the exam but since it was in the morning, I hadn’t eaten or drunken anything for over 12 hours.   Six different sites, three different people and they gave up.  So who knows what the doc will think but when you tell someone not to drink anything they are going to get dehydrated; and that makes it hard to get the needle in the vein.  Duh.  It’s so frustrating when you’ve been to dozens of these bar-b-ques and you know what to expect but no one listens or credits you for knowing your own body.

So they just called me and said they were neurofibromas and lots of them.  Pain meds were offered,  Right.   I need to get those results to my docs at the U.

Pam hasn’t been well; not so much her liver problems, though I think she needs help with dealing with it, but more of a lot of little things and really bad memory stuff; I have enough problems in that area, I need someone sharp.  Don’t know what to do.  This has been a very bad week with cancellations on her part and lots of phone calls and questions that I’ve already answered five or six times.  Some of that has always been there; but it’s worsening and I’m at a loss.  I’m hopefully getting someone on Thursday because she once again made a personal appointment during the time she sees me.  She doesn’t understand you can accept or reject those appointments and make a different time. She’s adamant she can’t change this one and I won’t change mine because I’ve done it to her twice already (my acupuncturist) and I need to go.  Hopefully, they’ll find someone to help me.

And to top it off, Pam’s boss, the supervisor, is already in dementia; I told her I need a ride on Thursday and someone showed up today, Tuesday and can’t help on Thursday.  And the supervisor is out today.  If I take a taxi, I’m charging it back to them.  I can actually do that if it’s medically related and it is.  Sigh.

Wednesday, October 2, 2013

The No Problem Problem

I was having a pretty good day yesterday pain wise although it’s sneaking up on me at about 3 in the afternoon: I had been to the dentist AND the store then got home, did the sous chef thing for dinner because I do things in small steps, resting frequently and since it was starting to hurt, I got thinking about the no problem, problem.  I used to have this thought in my head when I was in my twenties and even wrote about it so it is kind of a twenty- something story but not necessarily.  It goes like this:

One day, you and a friend make plans to go shopping for the perfect red dress you want for a party the two of you are going to be attending.  You’re both very excited because you are also planning on going to a nice restaurant, spend hours looking for just the right thing and if there’s time, maybe take in a movie.  It was going to be a great day!!  So, off you go, giddy and filled with anticipation, your hard-earned money tucked safely in you purses.  You climb in the car and head for the mall.  The one with the upscale designer clothes, not the cheap rip-off ones you could usually only afford.  This was different. 

So you go into the first store on the long list of options, and there in front of you the dress of your dreams is draped fashionably on an oak table.  It was an awesome.  And it was your size.  You immediately ask the clerk for help, go into a changing room and try it on.  Perfection!  Every way you turned in the mirror, all the mirrors around you that gave you front, back and side views told you this was the one.  This was it.  You had to have it.

But then a thought occurs to you.  You and your friend had planned the whole day around shopping for this dress.  Would she be mad if you said you didn’t need to look any further?  What would you do with the day?  You know your friend already had her dress for the party.  It was too early for lunch by several hours and the movies didn’t start until after lunch.  Browsing bookstores is always fun but for three hours? 

And then, the piece de’ resistance; you think, maybe this dress isn’t right after all.  Maybe you can ask them to hold it for you for a few hours.  In your heart you know that’s not true but you question it anyway, driving a wedge between what you know and your doubt.   This was the dress.  But this wasn’t fair!!!  You planned the whole day around this….you LOVE to shop.   You are desperately looking for any reason, any one at all, to make this day into what you had in your head: shopping, shopping, shopping, lunch, and a movie.  Silly?  Maybe. Forty years after I wrote it, I can’t really relate to it specifically and of course, it’s not rational or even important in the scheme of things.  But it’s a pattern you can easily develop.

The thing is people actually do that, including me.  I’m not a shopper so the story doesn’t describe me, but can I get the “no problem, problem” syndrome?  You bet!   We all make problems where none exists instead of adjusting to the situation, because situations change…constantly.   We adjust, we transform, we accept, we try and turn it into something fun…or, we waste a lot of time doing what isn’t necessary and in some cases, make ourselves sick because of things we can’t control, don’t need to control and should in fact, stop trying to control.  Gosh, if only I could do that all the time!!!

Saturday, September 28, 2013

Power Struggles

I haven’t been keeping this up as much as normal.   I feel drained of things to write about.   Pain, gastro issues….yadda, yadda.  I did see my GI person but it was at a different office, 20 minutes from me.  That’s a long way for me, even as a passenger.  Then they got me in for an ultrasound on my tummy and my bladder, but that was closer to home.  Pam was an absolute doll and stayed way past her time.  She even had another client and called her to make sure it would be okay.  Thankfully, she had no problem with it.  I’ve done that too, on rare occasions.  So, now we shall wait and see.

My pain doc’s nurse promised me my script would go out Tuesday but it’s Saturday and it’s not here.  This happens all the time.  I do have enough to last through Wednesday so it should be fine….IF she actually mailed it.  Once, when she promised me it was “in the mail” she had forgotten to mail it altogether…so five days was wasted tracking it down.  Luckily,  that time I had an appointment there so I just got it then.

I don’t know why she keeps putting me through this.   What difference does it make if she mails it early?  As long as it’s dated for the right time; the pharmacy won’t fill it otherwise.  It’s a power struggle and it’s ridiculous.  I’ve been going there for 15 years; they know me, they know I’m very, very conservative (to the point where they have gotten mad at me for not using my breakthrough meds)….and this time I actually was going to be out of them before the next dose.  And she was unhappy about that, of course. 

I get that they have many patients who do the opposite and who may be abusing and not really in pain…but I’m not one of them and they know it.  I keep getting worse, it would be nice if they would be less strict with me, but she has a way of lecturing and shaming so when she’s in that mode I just let her ramble, agree at the end and hang up.  I mean, she has also been remarkably supportive.  I guess she has many patients who try and pull things so it's an automatic response.   I'm very happy with the team so I guess I need to relax about these things.  When you are in the kind of pain I’m in, you really need to pick your battles or you’re never going to have a less painful day.

I haven’t been sleeping much at all and I never nap so it is getting very irritating.  I always unlock the front door about an hour before Pam gets here so if I don’t want to get up to answer the door, she can let herself in.  Well Friday she had a scare.  She was standing over me saying my name (she said five minutes but that couldn’t have been the case) and was freaking her out because I wasn’t responding.  I had been watching the end of some movie on Netflix (didn’t finish the night before) and I heard my name and kept wondering why the characters in the movie were calling me.  Talk about your deep sleeps!  It was the most restorative few minutes I had in a long time!!

Saturday, September 21, 2013

No Footholds

It never ends.  I started eating avocados for the calories and to get some Potassium and my doctor just called to say my blood work came back and I have high Potassium and need to stay away from things like that.  I also drink coconut water for the electrolytes.  Have to stop that too.  And I don’t even drink that much of it.  I give up.  I have a GI appointment a week from today and I’ll go over it with her.  Again.

Had two days IN A ROW where the pain was doable enough to go out into the world.   Then rain started to come in and it was very ghastly yesterday and kept me up two nights in a row.  Every time I have a “good” day I do thank G-d and at the same time, dread what’s coming.  I’m repeating myself but it’s never ending and I have nothing much to write about.

I did have my eye exam finally….more drops because the Restasis just about killed my eyes.  So drops daily and I go back in three months….but I will get my new improved (hopefully) glasses before then.  Still peeved that they screwed up the first time (the first eye doc, the one standing in for my regular guy who was on vacation, should have caught the dry eye.  That is why the prescription was wrong.  And he said it’s much different now, so we shall see.

Please pray for Ashley, the daughter of a friend of mine with NF.  She has much pain and is very young.  She just had a FIVE HOUR MRI.   Your prayers are most welcomed!!

Thursday, September 12, 2013

Limbo Land

Limbo land is no place to put down roots.  Nothing much here, nothing to interest me anyway.  Which is what makes it limbo.  But limbo is a choice as are most real estate choices.  Not all by a longshot.  But limbo?  Like suffering, it’s a choice.  In fact, it brings suffering to a whole new level of boo hoo.

As I have written many times, pain is something your body does when it wants to warn you that something may be wrong.  And sometimes it just takes off on its own little orbit and never shuts up about what’s wrong.  Even when I scream “There’s nothing I can do about it so shut up!” it doesn’t.  Shut up.  So when it happens for too many days in a row, when the weight I can’t afford to lose keeps dropping off regardless of how much fat I consume (avocados, meat, peanut butter, high fat chocolate), when I start freaking out over it making everything far worse, I see a “Welcome to Limbo” sign and regardless of what direction I go, I always wind up back at that damn sign: Welcome to Limbo.  Land of the lost.  Land of the “I really, truly, don’t know where to turn.”   Boring.  Deadly boring.

When I’m having a “good” handful of hours (not days anymore; ½ days sometimes, but mostly, five or six hours) I feel emotionally more grounded, hungrier (for food and life) and even, dare I write it, hopeful?  Not for a cure or anything as crazy as being free of pain…but hopeful that I will be able to withstand this and make it to the end without lighting the dynamite myself. 

I don’t know why that piece has me by the throat so much.  Cognitively, I see nothing wrong with someone in my situation taking the plunge.  I mean, the pain is uncontrollable, I am in tears much of the time, I drive so rarely my car battery died, I have no appetite, I can do very little without help from Pam or someone else, my eyes are going as well as my hearing so the few things that got me through the day, reading, writing, movies, is vanishing….I must have been a real badass in my former life to withstand this kind of torture (on the torturous days) or a real idiot to believe there is a beforelife, an afterlife, or anything else that isn’t actual life and can’t be proven.  Like the tooth fairy. Or “Second Life,” that online game where you become someone else.  Sigh.

And Saturday is Yom Kippur.  As I wrote in my earlier post, whether or not I make it into the Book of Life for another year will be sealed on Saturday.  It’s already been written.  But there’s time to make a plea to G-d.   I pray everyone I know and love; my nephew and nieces who are now young adults, my brother, sister, their spouses and extended families and every one of my friends have many happy, healthy years ahead.  And Oliver, of course.  Well, he’s got  nine of them but who knows which one he’s on now.

Life’s a kicker, ain’t it?  I do have happy moments…just too much time to think about questions without answers.

Wednesday, September 11, 2013

Falling Chips

Had a doable day yesterday which makes me feel bad about my earlier chat with G-d.  However, I was really making a plea for help….and I got it the last couple days.  Make no mistake, the pain is not gone, but I got out of the house and went shopping with Pam without coming home in agony.

The trick is not to overdo when I’m feeling the pain drop to a “5” because that’s what I always do.  I just take advantage of feeling good and race around for a few hours then come home in tears.  Balance.  I have to go for balance.

It’s is gorgeous here right now but supposed to reach 90 the next couple days.  Way too hot for me but the blue skies and sunshine make for a better mental state.  Unless the pain blows up.  But, let’s not go there.

I had an appointment with a naturopath to talk about eating options but I cancelled it.  I should re-schedule, I know.  I don’t get what’s going on with me but I am not sure a naturopath can help.  I’m eating well, I’m getting the calories but I’m not gaining an ounce.  My theory is I’m burning way more calories than I think I am; the kind of pain I’m in takes a lot of energy out of me which is why those calories get burned.  I can’t do a darn thing about that…and if I eat too much?  Back on the constipation merry go round.

So I am going to just let it go and accept it.   When I’m not in pain, I eat a lot.  When I am in pain, I have to force myself to eat anything.  I tried Ensure again and it upset my stomach, even though it was supposed to be lactose free.  But I may keep drinking them.  Worrying about all this is another way I lose weight.  Stress can cause you to gain or to lose, and for me, it’s the latter.

I see all these ads for weight loss but not once have I seen a weight gain product or food delivery offer, and hundreds of thousands of people need to gain weight for the same reasons I do.  Ensure can’t be the only choice.  I mean, there are a lot of protein body building products as well, but all seem to have lactose, dairy, whey…things that back me up.  Sigh.

Letting go and letting the chips fall where they may seems the best thing to do.  Worrying solves nothing.

Cannot believe it's been 12 years.....

Friday, September 6, 2013

A Mensch

I am in profound agony at the moment.  I had to go to the urologist today and it did me in.  My feet are killing me….like having them stuck in hot moving sand.  I talk to G-d all the time as well as my my “helpers” on the other side …those that I loved that went before me.  I’ve been lying here begging for help.  Also, I was worried about my friend Jan who has NF and who I email back and forth with.  She went into the hospital last week and five days later, I still hadn’t heard.  She finally wrote back.  She had an undiagnosed uti and kidney issues.  Like Ted, Pam and I, her experience with hospital stays aren’t good.   Richest country in the world and the healthcare is often subhuman. 

It’s Rosh Hashanah (the Jewish New Year) and I will or will not be written in the Book of Life over the next eight days (its 10 total).   Written now, sealed on Yom Kippur.  Or so the story goes.  Anyway, this is the only time it’s okay to make a personal plea to G-d (for yourself).   I don’t remember the reasons around that law, but I can guess.  It’s always better, wiser, more mensch like (a mensch is a doer of good deeds….one with an open, loving heart who would rather visit the elderly than go to a movie…that kind of person) to pray for other people.  Oh sure, if you are dying and want to live, or as in my case, your living but want to die, you can ask.  Just save it for these, the 10 days of Awe, as they are called.

Well here goes: G-d,  I have been trying as hard as possible my whole life, and especially that last 15 years, to practice loving kindness, goodness and all that is right with being human.  But I fail.  I get up each morning and do my routine.  I try not to worry about the little things that come with the very big things that are wrong with me.  I try not to compare myself to others, I try to be happy for my friends who do well, I adore my nieces and nephew, my brother, sister and their spouses and of course, my dad.   My brave, strong, role model dad who deals with the pain of spinal stenos at age 89.  I’m guessing he feels like cashing in too, on occasion.  Still, he soldiers on.  Like the soldier he was in WWII.  But I have never been, nor will I ever be, such a soldier.  I am flawed beyond measure.  I have wanted out for far longer than I’m willing to admit to here, but You know.
So during these 10 days, I am praying for release from  this tyranny of the tumors.  Sorry, a bad attempt at levity.  But levity is hard to find these days.  Amen. 

Okay, got that out of my system.  Now i need to ground myself, if possible.  And trust.  Be Still and Know.

Tuesday, September 3, 2013

Back Down

I have been getting little relief and a lot of dizziness with the increase in Fentanyl so I talked to the nurse and I took the 25 mg patch off for now.  Maybe I’ll try again another time, maybe I’ll just use them as back up (I’d need all four) if my 100 mg doesn’t come on time.  My depression suddenly skyrocketed too.  And it takes 18 hours to exit the body (the Fentanyl).  I don’t know what I’m going to do.  I may need to be re-evaluated.  Again.  I know it’s only been a week since the increase, but I know dizziness, depression and lack of relief when I experience it.

All I know is I feel like I did when I was going off methadone.  I’m beyond uncomfortable, I can’t get settled in any position; up, down, makes no difference.  I’m cold on the inside.  The only change was the increase so that has to be what it is.  And then there’s the pain.  Stay tuned.

Saturday, August 31, 2013


Well, my doc finally increased my Fentanyl patch from 100 to 125mg.  So I need to wear two patches.  I did my first one a couple days ago and so far, nothing.  Now I guess I know why they have never responded to my request for more.  I am so conservative and they know it.  And I’m assuming it takes a while for it all to enter your bloodstream but my pain receptors are full so I don’t know what will happen.   I was in a shitload of pain Friday.  Had a doable day Thursday but when I feel good, I go out and within a few hours I am in agony again. 

Saturday morning: I haven’t been sleeping well at all and last night was no different.  Woke up in horrific pain.   Showered, changed my patch.  Praying today will be better.  Gastrointestinal problems back on the rise big time.  Has been for days now.  It is sooooooo hard to keep the faith.  It demands everything and promises nothing, as the saying goes.  Well, my pain is the same.  It demands my attention and promises nothing.  Right now ,my feet are totally numb and the pain is excruciating.  I don’t think this increase is doing a darn thing.

I just heard this song on “Criminal Minds” and I’m thinking its G-d talking to me.  It is very hard to be still when the devil comes calling in the form of horrific pain, but I know I am not alone.

Tuesday, August 27, 2013


Through the years my journey with NF has afforded me to meet other people with this disorder and with the exception of losing a few to death, for the most part, they have remained in my life.  I am very grateful for that because the feeling of isolation on top of the many challenges of this condition is too much without the proper support.  Although I get support from family and friends, my NF friends understand in ways the unaffected can’t (though not for lack of trying).  And they have their own challenges that I couldn’t possibly understand either.

My NF friends, most of whom I have only met online, are helpful to me in ways unmatched by all the drugs, acupuncture, BioLateral, drumming, etc.  They take some of the pain away just by listening, by expressing themselves to me in emails or in a comment to a post.  We share war stories as well as days of blessed respites from the pain.  We discuss other things as well; our friends, pets, books, movies and anything else we can do at home.  Most of us can’t drift too far afield; some of us get around on power chairs, some can’t sit for long (like me).   But we aren’t much different from anyone else in most ways.  It’s just that it takes us much longer to do the “normal” things (like meal preparation, showering, etc.).   And we remind one another to be grateful for what we can do. 

One person in particular means the world to me because her daughter is dealing with the same horrific pain I am and she’s only in her twenties.  And still her mom takes the time to tell me G-d loves me.  She encourages me not to feel guilty about writing something negative.  She supports me by sending me cards and even gifts.  All this while taking care of a daughter’s whose pain must split her own heart in two.  Watching a child suffer is unimaginable to me. Yet this woman also takes the time to reach out to me.  She has been doing that for years.  Her faith in G-d is strong and she reminds me of His love for me.  And I need to be reminded.

Being grateful is a tough one for me when I’m hurting.  And yet, that’s the time we should do it most.  I know that sounds crazy, but the only way to really change things is to start by accepting things the way they are.  Really.  People think if you accept that which you don’t want you are giving up.  That’s not the case at all.  Trust me on that one.  The only way out is through.  Which means facing things head on.  Now, accepting my condition doesn’t mean the pain will magically disappear.  Heck, if that were the case, I wouldn’t need this blog.  But if I accept it, my attitude will be the thing that changes and my experience of the pain will change as well.  If I could only hold on to that knowledge!  But when it takes over, (the pain), it takes over completely.   And when I have a day that isn’t as bad as they normally are, I give thanks constantly and try not to anticipate the return of the not-so-pink panther.

I sometimes think about the people who come and go in our lives; a friend I haven’t seen in five years came by yesterday.  She was diagnosed with blood cancer a year ago, but so far, her symptoms are mild and they say she could go 20 years without further symptoms or it could start rearing its head a lot sooner.  She was one of the first people I knew when I moved here 27 years ago.  Then she got married, they adopted a couple of incredible girls from China and they have been living a ferry ride away for six years now.  I realized when I saw her just how much time has gone by and all of the tears and laughter that went with it.  In those ways, I am no different than anyone else.

Looking for those similarities makes me feel less freakish.  Being in pain and having very limited mobility tends to make one forget that other people suffer too, many a lot more than you or me.  All together now:  Roof over head, food in belly, access to medication, friends and family.  I am blessed even though I am in pain.  And for those of you who don’t have the things I mentioned, you too, are blessed. Looking for, and finding those blessings can be a challenge.  Never stop looking until you find them.  Then never stop giving thanks for them.
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