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Monday, December 31, 2012

You Don't Look Sick

I read this a long time ago at a site called You Don’t Look Sick.  The link takes you there:

It’s a great analogy of what daily life is like for the chronically ill.  She really nails it (she has Lupus). 

Pam took me shopping today, and when we pulled into the handicapped space at Trader Joe’s someone else pulled into the spot next to me, also handicapped.  The driver was looking at me steadily, as if judging whether or not I really was handicapped.  At least that’s what I thought.  She was probably just waiting for me so she could get out.  It’s funny, because before I needed it, I would sometimes judge a person in that space.  I don’t anymore.  I know that on some days, I “look” fine too. 

Not much more to say today....have fun if you go out to celebrate, drink responsibly, etc. etc.  If you stay home, have a lovely, quiet evening (as will I) and don't make resolutions because they don't mean anything if you aren't sure you want to make one.  You can do it any time and any day of the year so do it when you are committed to whatever you are resolving to do.  And don't beat yourself up if you break it on occasion; the worst thing you can do is convince yourself you aren't able to do so.  For the end of the year, I will leave you with Marianne Williamson's famous quote from "A Return to Love" that Nelson Mandela used in his Inaugural speech in 1994

"Our deepest fear is not that we are inadequate, our deepest fear is that we are powerful beyond measure.  It is our light, not our darkness, that most frightens us; we ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous?  Actually, who are you not to be?  You are the child of G-d; your playing small doesn't serve the world.  There is nothing enlightened about shrinking so that other people won't feel insecure around you.  We were born to make manifest the glory of G-d that is within us.  It's not just in some of us; it's in everyone.  And as we let our own light shine, we unconsciously give other people permission to do the same.  As we are liberated from our own fear, our presence automatically liberates others"

Blessings to you all!

Friday, December 28, 2012

Is it Over Yet? (The Holidays)

My pain doc’s nurse called yesterday.  She asked me how much of the Miralax I was taking and almost had a heart attack when I said three cap fulls.  At once.  She said change it to three times a day (which is says on the gigantic tub it comes in….I just don’t read very carefully).  I’ve been doing it that way for months now.  Maybe that’s why I have so much gas.  She also yelled at me when I said I didn’t need to re-order my breakthrough drug, morphine.  She said I need to take it because the goal is to be functional.   I WANT MY BOWELS TO FUNCTION.  But it’s the same as a spinal cord injury in terms of function.  I can wish all I want.  Or I can adjust.  Hmmm.  I wonder which is better for me mentally and spiritually and even physically.  Anger or acceptance.  Not rocket science but still very hard to do.  Especially when one is isolated so much with nothing but my brain on drugs to keep me company.  Thank heaven for Pam.

She took me out for 30 minutes because I needed some stuff, had no cash, and since the sun is actually out (after six weeks of nonstop rain…think monsoon) I wanted to get out of Dodge, so to speak.  She’s a honey and is always making suggestions that would work for the normal constipated person.  Licorice, molasses, etc.  I finally said it’s like offering a carrot to a blind person and expecting their eyes to improve.  Not gonna work.  I made more of my magic paste, but so far, I’ve only tried it once.  Gotta try some more.

I have no appetite again.  Zero.  I made oatmeal this morning because I felt hungry but I could only get a few bites in.  Then I had a piece of toast.  I gotta stop obsessing; I just don’t know what to do and I’m scared.  I don’t even know of what, anymore.  Pam just offered to make me something but I’m nauseous.  Chicken noodle soup might work with a little leftover chicken in it.  She’s making that now.  Ah, the life of Riley.  I’d give anything to be able to do it all myself.

I look back on all the things I used to complain about: cleaning, shopping, etc. and I feel embarrassed and ashamed.  Don’t it always go to show that you don’t know what you’ve got til’ it’s gone.  Paradise to parking lots.

May you all have a happy, healthy year.  Be grateful for what you have and try not to be angry if you lose it.  Learn from it.  Grow wiser, not just older.

Wednesday, December 26, 2012


Before things became difficult for me, I always took care of major end-of-year cleaning of paperwork.  Now that my medical bills and statements and everything else is the size of every phone directory in the Universe, that’s become harder.  Mentally and physically.

I’m learning to separate myself from reality via drumming, at least for 30 minutes or so but the harsh reality is, it needs to be done.  My goal was always late November, but with the bills coming in faster they Halley’s Comet (yea, it didn’t actually come in, but you get the metaphor), it’s impossible to do until the last minute.  On top of which, I need to shred a bunch of other stuff too.  I could burn it but I don’t have a fireplace so my landlord wouldn’t approve.  Kidding!   I have one, but that’s a hell of a carbon footprint.  

So shredding it will be.  And I have a ton of other stuff to go through.  Makes me anxious, gives me a headache.  But Pam will help me with it…..tomorrow.  That’s the plan but you know what they say about plans.  Thank heaven for Pam.  It just wouldn’t get done, otherwise.  Too overwhelming.  I mean, I got things in order a couple years ago (I can hear you laughing.  Stop.  Stop laughing at me) but oh, how things have changed.

So my gastro troubles persist, but I’m trying some new things to confuse my body.  It is so use to certain types of bulk, of veggies, etc. (I’m nothing if not consistent) I thought I’d confuse it.  Shake up the ol’ bowels.  Right.  Seriously, I have bought, made (looked up recipes on the Internet) and eaten kale, Swiss chard and sweet potatoes or yams for a few days now.  I’ve eaten all before, just not for a long time.  I had about a ½ pound of Swiss chard and some chicken for lunch.  But ½ pound shrinks down to one, maybe two, servings.   Very yummy sautéed with garlic and olive oil….little salt and pepper and your good to go, no pun intended.  I damn well better be able to go, or I’m suing someone, somewhere.  Sheesh.  Dinner will be some leftovers and tomorrow its kale!  Yea!

My friend Anne, who lost her dog Remy two years ago just got a new puppy!  A sweet (well, haven’t met her, but she looks sweet…of course, Remy was sweet and endearing, especially when he wanted a treat which he knew were in the bottom of pantry, whose door he use to nose open) we won’t know for sure for a while!  She picks her up near me next week and promised to stop by and say hi real quick before she get her settled at home.  She can’t come out of her carrier though, because she hasn’t had all her shots and then there’s hoozit, my cat, otherwise known as Oliver, Master of the Universe and crier for treats when he’s not laying plans for his next conquest….which would be the hummingbirds on my deck if he got out there.  Don’t know what I’m going to do this summer; he spends his days there as long as I’m home.  We shall see!!

Monday, December 24, 2012

Experiment In-Testines

One of my all-time favorite movies was “Experiment In Terror”   I ordered it online a few months ago and could not believe what a deal I got for it…it’s hard to get and expensive.  When it came, I couldn’t play it because it was a UK copy. Buyer beware!  Should have looked more closely.  I usually do.   Anyway, thought I’d play with the title of this post!

And the gastro-intestinal experiments continue.  If I hear the world “bulk’ one more time I’ll puke.  People with NF tumors in that area of the body often, like me, have neurogenic bowels (and bladders) which is what spinal cord injury people have.  Thus, care must be taken to make sure one eliminates waste.  For me, the struggle is as constant as the northern star; and as Joni Mitchell once wrote, “Constantly in the darkness, where’s that at?”

I can no longer digest green beans, a staple for me.  Now it’s so gassy I can’t eat it.  I made Swiss chard yesterday with a yam, and today I made kale with a yam.  My tummy hurts and I eliminate next to nothing.  Oh, and that shot?  The Relistor?  I’ve tried it at home four times and all it did was give me a horrible stomach ache and diarrhea.  It worked in the hospital and I know I’m doing it right, so who knows.  Right now I feel awful.  Maybe (heaven forbid) it’s chocolate I can no longer digest.  Perish the thought.  I do eat far less of it, though.

I’m tired.   So very tired.  I had an incredible experience with the drumming the other day.  I did what my therapist suggested and it was a wild ride.  I made it to the end of the tape, was “called back” and it was like going through a worm hole (well, the movie version) going and coming back.  I strongly recommend getting a Shamanic drumming CD, putting headphones on, turning off the phone, and letting yourself go.  Just picture a place that feels safe to you, hold one question in your head, close your eyes and put yourself in that place and see what happens.  Your mind will resist at first but just let the thoughts come and go and refocus on your question.  If nothing else, it takes your mind off all that ails you. At least it does for me.   At this stage, I take what I can get and am thankful for it!

My brother just phoned.  He and Fran, his wife, are coming by for a visit before they leave for NM for a week.  He said they will stop and get stuff to eat.  Hope I can eat, after all those greens and the yams.  I feel awful.  It will be nice to see them though!!

I know I used this song somewhere else on my blog, but it's appropriate (again)

Saturday, December 22, 2012

The Year in Review

As the year comes to a close, I look back on all I’ve learned, all I’ve lost and all that I can give thanks for.   The last one used to be difficult because I could barely see what there was to give thanks for as my disorder progresses.  My pain is barely tolerable most days, but I have tolerable days as well.  I also have a few days here and there where I actually feel kind of normal, whatever that is, right?  And I still have a roof over my head, food in my belly, and friends and family.  And I am grateful for all of that.

I also still have a neurogenic bowel, a neurogenic bladder, tumors everywhere, teeth that are costing me a fortune, scary digestive issues and a brand new issue: severe pain in my left ear and hearing loss that is getting worse all the time.  Methinks there is a tumor in my head causing the pain in my ears, but I am too worn out to do anything about it.  Actually, I saw it on my last MRI and it was big, but not in my brain.  My doctors didn’t even return my calls two weeks ago about my CT scan.  I can’t be fixed, so they just ignore me unless I get in their face big time.  I no longer have the energy for that, so it will play out however it plays out.  And you know what?   I am perfectly okay with that.  Well, maybe not perfectly; I definitely have moments of panic attacks.  But I’m working on that with meditation and my drumming thing.

I’ve actually been a bit afraid to do the drumming thing since I talked with my therapist.  She advised me to find a place in my mind I can go that feels safe, put a question (whatever the question is) out there, and then just listen to the drumming.   But the drumming changes the beat toward the end to pull you back from wherever you go (up or down, usually, though we aren’t talking about heaven or hell) and you have to wait for that so you come back.  Sounds weird, but it’s a Shamanic thing and it helps.  Just have to work up the courage.  I guess I’m afraid of what I’ll see or find out.  Afraid of the answer to my question, which may not have an answer at all.

My friend Ted, who is in the nursing home because he can no longer function at home due to the pain and complications of NF, just called.  He spoke with some counselor there, and he’s looking into hospice.  She told him that hospice is no longer just for people who are dying.   My situation is heaven compared to his.  And hell compared to “normal” people.  So comparing is poisonous.  I am terrified I’ll end up in his shoes.   He warned me again not to let that happen, if you get my drift.  We treat animals with more compassion than we treat one another when it comes to these situations.  A suffering animal gets euthanized, but our Judeo-Christian fear factors keep us from ending the suffering of people like Ted.  People like me. 

I am way too late to benefit from any “cure” that comes along, although I just read they have successfully reduced NF tumors in mice, so maybe children will not have to grow old in this nightmare.   That would make me extremely happy!  Sorry I am getting so negative; talking to Ted always breaks me in two.

May you all have a great holiday and a happy, HEALTHY year!

Thursday, December 20, 2012

Who Wants the Warts?

Sometimes, I lie on my couch pleading for someone to get me off this planet.  Other times, when the pain isn’t as horrible (the day after my new patch for instance.  Twice a week) as all that, I give thanks for everything I have, including what I don’t want.  As I always say, having everything you want isn’t normal or a reasonable expectation.  But wanting everything you have….that’s the ticket.  Because who wants the warts, right?  Well, sometimes we need the warts. To grow, to learn.  Yuk.  Frakking warts.  I tend to vacillate a lot, between loving-kindness and sheer hatred for mankind and this retched place we live in.  See?  It even took more words to express the not so nice part of me.  As Linus of “Peanuts” once said “I love mankind….it’s people I can’t stand” You know, like that.

So I went to the dentist this morning and of course, I need yet another crown.  My mouth is as bad as the rest of me.  I’ve had literally nine root canals, most of my teeth are capped, and a few months ago I had an extraction because I couldn’t afford more than that.  I couldn’t even afford that.  But this tooth is in front, so I have to find a way.  I will.  I always do.  See, this is the good news/bad news thing I like to debate with myself.   One so often hears “Man, I can’t get ahead.  Just when I have a little extra, BAM, something happens and it’s gone (money)”

Well, I used to say that as well.  Now every bill (my recent ER visit?  Almost $7,000.  Nine hours.  CT Scan) is horrifying, though what can I do?  But there is a flip side to the coin for people who are earning money (as I once did).  Why not say to yourself “Gosh, I’m sure glad I got that extra money when I did.  I really need it now!”   And be grateful.  Truly grateful.  If you practice it enough, it will become true.  Because it actually IS true.  It’s a test, and we are tested over and over again, ad nauseam sometimes.

So I spoke with my therapist today about the drumming thing.  She gave me some advice on how to have a more Shamanic experience with it, which she told me last time I saw her but forgot about.  I’m excited but a bit nervous.  I do it at night, because the darkness makes it easier for me.  I haven’t gotten to the end of it (it’s only 30 minutes) and she said if I have the experience I am going for, it’s important to get to the end of the tape, because it takes you back from wherever you go when doing it.  Mentally, I mean.

My regular caregiver was out yesterday and today for some kind of training.  They sent someone else today because I had that dentist appointment.  She was great; while I was at my appointment, she took my grocery list, my money, and got what I needed.  No errors.  If I ever need a replacement for Pam for a day, I’ll ask if she’s available.

Okay, right now I’m putting myself on the starship Galactica.  It’s an amazing story.

Monday, December 17, 2012

Here's The Deal

Okay, here’s the deal.  The last three weeks have been pretty challenging.  More so than normal, that is.  So I’ve been meditating to drumming and trying not to go too “dark” on my gastro-intestinal issues.  If the docs at ER didn’t see a blockage, I’ve got to accept that.  And if it means liquefying my bowels in order to eliminate, I’ll stock up on coconut water for the electrolytes.  But eating is a problem, because I have no appetite when I’m in this stage, which seems to come every other month or so.  But this time it lasted a long time.  It finally cleared up a little in the middle of the night…no diarrea, thank heaven.  And again this morning.  Sorry to be so graphic, but I know others out there have this challenge.

So I had this thought.  My body is still craving the methadone, even though “I” am not.  And I really thought hard about that.  So while I was meditating, I gave thanks for all the years the methadone helped me function without excruciating pain.  I thanked the methadone, and I meant it.  Then I said since no more is forthcoming, and since it not only didn’t help with the pain anymore, it made other things far worse, would you please let it go forever.  But mostly, I gave thanks for it.  And I started to think about addiction... The kind that’s not attached to those of us who need this stuff for real, intractable pain coming from a known source….like tumors, whether cancerous or not. My bowels  cleared up 12 hours later.  Connection?  I say yes, because in giving thanks, I was letting go of a situation I have no control over.  Keeping in mind the Serenity Prayer:  G-d, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference”   The last one is the toughest, for me.

Correction:  I just saw my healer who does acupuncture/energy work/gentle chiropractic work (though not much of that for me) and she said the body does not want stuff that's bad for it but we create the cravings through our behaviors (like feeding it narcotics).  So all the withdrawal is purging (which I knew) and all that discomfort which for me, will go on for as long as a year though not as horrible as it was at first, is just that....a purge.  Phew.  Still, when I meditate, I will lovingly send it on it's way.  The neurogenic bowel is another story.

And I thought, what if (and maybe this is done, I don’t know) we taught addicts about the difference between the body and the mind, or the soul, or whatever.  So that when they crave the drug, they can work on acknowledging that the “I” of them does NOT want the drug (if he/she doesn’t) but the body wants it worse than anything else.  And I understand that it’s much different from those of us who would give our teeth not to be on any one of them.  So maybe it’s just about us.  Those of us in chronic, intractable pain who would love to find a way to get through the withdrawal of one particular drug.  The worst of them being methadone (or oxycodone).

These drugs serve an important purpose and the DEA and all the other brown shirts that want to control the distribution that pain doctors oversee need to get medical degrees in pharmacology and meet a few of us face to face.  Right.  Like that will ever happen.  Years ago I wrote a book entitled “The Politics of Chronic Pain Management”   I even had an agent.  Never did find a publisher.   I put a lot of work in it, interviewed doctors who were in prison for writing legitimate prescriptions.  While there is always the occasional (medical) OD, it’s usually done on purpose though not always.  Medical errors happen daily.  Why aren’t those doctors in prison?  Anyway, I wrote it a long time ago, when life first turned left on me when I wasn’t looking, and lots of it doesn’t apply anyway.

Okay, that was my rant.

Sunday, December 16, 2012

Withdrawal Symptoms Not Subsiding

I know I used to warn people off the Internet when it comes to looking up medical issues you may be having.  Much of the information is anecdotal, and even when you are reading from a trusted medical site, we are all different so talking to your doctor is best.

Okay….now that I got that out of the way, I can admit that I have been online trying to find out when this frakking (just started watching Battlestar Gallactica for the first time….love how they use “frakking”) withdrawal and stomach gas, constipation and diarrhea (depending on the day) will end.  It or me, that’s what it’s down to.   Too much bulk.  Not enough bulk.  It’s endless.  And the insomnia and body aches (which were worse last night than they have been for weeks….the withdrawal is like a bad penny….just keeps turning up).  I eat, gain a bit of weight, then have diarrhea for (this time) three weeks….but if I stop taking my Miralax, I’m constipated within a day.  I HATE THIS.  So I looked up Fentanyl and that scared the bejeezes out of me.  I need to trust that it will stop.  Being on it for 12 years at 60 mg a day is tough.  My body just wants to hang onto it; and I’m on another narcotic; you’d think it would not be this bad

I was so whacked out from the muscles aches last night I couldn’t even do my drumming meditation at bedtime.  I had done it twice during the day, though.  If this isn’t Hell, I hope I’m in Heaven 30 minutes before the Devil knows I’m dead.

My nieces came for a visit yesterday….all three of them.  The darlings brought lunch and we laughed and chatted for two hours before I said I needed quiet.  They cleaned up, hugs all around and I hope to see them again soon.  School will be back in session soon, so it may be a while. 

Meanwhile, my nephew returned home after three months in Southeast Asia (an abroad thing for school) yesterday!   Haven’t seen him yet, but he’ll be here 10 days before he heads back, so I hope to see him and hear about his adventures, especially with the Monks.  He did text his mom before he left to say he was riding a bike through the streets (or was it a path in the jungle?) when dozens of monkeys started following him.  Awesome, it was!!!  I can just see it!

This Jefferson Airplane song, "White Rabbit", may have been a "pro" drug song in the sixties, but it's a cautionary tale for me

Tuesday, December 11, 2012

Bowel Struggles

Due to my lifelong struggle with constipation due to NF, my relationship with food has also been a lifelong struggle.  For a while, four years actually, I had it completely under control by eating flaxseed meal with a bit of yogurt every morning, along with 500 mg of magnesium morning and bedtime.  After all the years of struggle, it was cleared up in three days.  Amazing.  Until it stopped working.

Then I went to Yakima Fruit Paste and Senna pills.  That worked for about a year, and then stopped in its tracks.  It’s like my body works until it starts to get bored with what I am putting in it.  I’m told now NOT to take the senna because it will make it harder on my already stressed out muscle that makes things leave the body.  Then of course there is the squatty potty….got it.  So far, no luck.  G-d I’m a load of laughs.

I wanted a Shamanic experience and my therapist gave me a drumming CD to listen to and hopefully, move me out of my head.  I’ve had those experiences and they are lovely.  Being elsewhere.  Trying so hard not to stress and worry, etc...  I mean, that crap they give you for a colonoscopy didn’t even work that well.  And I threw out the remainder so all I have now is Miralax.  I know that stressing causes tightness in the stomach (for me anyway) so I’m trying to just breathe and not think about it.

See, I worry so much about food.  I have no appetite but I feel I “should” eat something.  That’s insanity.  I eat when I’m hungry, stop when I’m full.  That has gotten me through since the last hospitalization until things took that nasty turn a few weeks ago.  So it’s back to square one.  If I don’t eat much today (as yesterday) it’s not the end of the world.  It will get back on track.

I phoned my pain doc and left a message for him to look at that CT scan done in the ER….I don’t trust the doc wanna bes down there….I know some are full-fledged, but almost zero know about NF and what to look for.  Saying there are “too many tumors” for him to see my appendix was a hint for me.  He may not be seeing blockage for the same reason.  But my colonoscopy last April was clear.

That Joni Mitchell documentary got me hooked on this's been a while....very romantic and sweet

Another Fun Day at the ER

I feel like what I imagine a tennis ball feels like, if a tennis ball can feel.  I tend to personify everything from my cat (naturally) to food products talking back to me, spurring me on to eat more of what I shouldn’t be eating.  Those bad chocolates, they ought to be put away.  Maybe later.

So I had nothing but horrible constipation last week, and the week prior, nothing but diarrhea.  This yo-yoing back and forth cannot be healthy.  A bulimics dream, or nightmare, however you want to look at it.  But it’s got to wreak havoc on my electrolytes.  The best sport drinks in terms of electrolytes are ridiculously high in sugar….and I was drinking one with no sugar, but a sugar substitute which I think may have caused the problem to return.   So now I drink Coconut Water, which may not be right either….no one knows.  But there is zero sugar, no sugar substitute, doesn’t taste bad and is super high in electrolytes.

No matter how many times I tell the doctors that fiber makes it worse, they want to plug my nose and force fiber into me.  Not much of an exaggeration.  So I was in the ER nine hours…they were very busy.  They finally did a CT scan to check for a blockage, but found none.  They couldn’t see my appendix because of all the tumors so I’m guessing they may have missed a blockage.  They had only my white blood count and the fact that I was afebrile to go by.  Fine.  If I died from a burst appendix, hopefully it will be quick.  I spoke to my pain doc nurse the next day and she read a report to me from the Digestive Disease clinic and they said my problems were NF related and my colonscopy was fine.  That was eight months ago, and those of us with NF know how fast the tumors can grow.

If I want to die so bad, why am I fighting so hard?  Fear, that’s why.  Even though the known is horrific, the unknown is scarier.

So they wrote a script for this stuff called ‘go lightly’ which is for bowel cleansing before a colonoscopy.  I said, isn’t’ this the same as Miramax….she said no.  Meanwhile, it’s seven in the evening and my pharmacy is closed, so I went to the ER pharmacy with the friend who pricked me up (G-d Bless my friends….the one who took me and the one who fetched me) and when we got to the pharmacy, he said my insurance rejected it because I just had it filled.  I looked at what he was showing me and the order read Miralax.  I told him it was for go lightly.  So he had to call upstairs and we finally got it….but I started to think of all the serious mistakes that happen on a daily basis….thank heaven I was quick enough to catch it, but what if it was for some drug I never heard of and I got the wrong thing?  Scary

So it’s in that big jug which you fill almost to the top, but the powder in and chill it.  Doesn’t tastes bad; actually, it kind of tastes like coconut water.  But they told me to stop taking it as soon as I had some results.   It took 5 glasses of the stuff before I had any movement and I sure don’t’ feel cleared out….but I dumped the rest. 

I feel sick and tired and tired of being sick and tired.  I am so so grateful for the loving fiends who take me to hospitals, wait for me, bring me home, get me treats….I’m grateful for the help I get through DSHS, 15 hours a week is wonderful beyond words; I’m grateful for the food in my belly and the access to my needed medicines.  I’d be dead without all of those.  And that’s the irony, isn’t it….being grateful but praying for death every single day.  You love me enough to make sure I get something out of lie but you don’t want me.  I just want out of this body…and I pray its better.  Elsewhere.

Tuesday, December 4, 2012

Starry Night

One of the few things I can do to help myself with the pain is to “go somewhere else” in my mind.  If I follow my muse, it leads me out of the path of the abyss, one of my favorite places to hang out when I’m on the pity potty.  Speaking of which…and as an aside…my sister in law sent me this link to a company called “Squatty Potty”  It’s about helping with chronic constipation by squatting, instead of sitting, which is a relatively new concept (the past 100 years or so).   I realize my issues are somewhat unique, but this is a simple thing that just might help.  Visit the site if you like: and see what you think.  My order is shipping to me this week, so we shall see.  I am back to being constipated again…one extreme or the other, if you get my drift.

Back to disappearing myself into another place, another time.  It’s not quite meditation; more like a shamanic conversion, as I mentioned in another post.  I do it sometimes when I’m writing…that drifting off thing everyone does, only when you are focusing on one thing, it’s a bit different than zoning out.  And it’s not the same as being high, though I don’t get high from my drugs.  They either help with the pain or not.  Still, I don’t drive after taking something, or smoking my medical marijuana.  It’s weird, because on rare occasions, I WILL feel a bit high, but it’s not often at all.  Almost never, actually.  That’s why the whole drug thing for pain patients is so outrageous. Under medicating someone in agony is torture.  Our drug laws around this issue (for pain) could be used against the enemy as a form of torture, I kid you not.   But unless you are dealing with intractable, chronic pain, you don’t know.  That’s okay, not to know.  But to judge is not okay.  Read my entitled “Pharmacists and other Sordid Judges” It’s an earlier piece, but addresses this issue.  To have people who don’t know you from Adam sit in judgment of you is horrible….but it happens all the time and certainly not just to people like me.  People are judged in the media instantly.  I always try and remember that whatever is being discussed, most likely I wasn’t there, therefore I don’t know.  Period.

I want to find a quiet place to rest my weary bones, my weary mind, my weary mind.  A safe place, where I am not in pain, not fighting for every penny.  And to be grateful for what I DO have, which is a lot.  I was out on my deck this evening, putting grates back up between the slats so Oliver can go out there safely.  Of course, those hummingbirds look pretty good to him, so I have to watch him….he doesn’t like it much out there these days anyway…too cold.  Anyway, when I was done, I turned around and looked inside my living room.  One light was on, my throws were tossed on the couch, a book was opened and music was playing.  I stopped and looked at it in awe and thought to myself, imagine you are homeless.  Imagine you are looking at someone else’ s safe, warm, dry place, with food in the cupboards, a fireplace for real fires, and of course, Oliver   I was so overwhelmed I almost started crying.   I mean, I think of these things and give thanks for what I have, but looking at it in the eye is different.   Whatever it is, it’s important to think of what you do have, not what you don’t.

And having what you want or what you think you want is unimportant because it’s impermanent.  But wanting what you have is a different thing all together because it includes the bad, the stuff we think we don’t want.   But everything we have or don’t have teaches us something.  And accepting it, embracing it, giving thanks for it….that’s the ticket to the other side.  I don’t mean death; I just mean the other side of the coin of life.


Monday, December 3, 2012

Skate Away

I watched a Joni Mitchell documentary on Netflix the other day.  She moves me in ways that are indescribable.  I guess millions of people say that.  I’ve been lying here wondering how there are people who seem to be able to grab onto the creativity that is in all of us, and move mountains whether it’s through music, poetry, technology, medicine….whatever the art form.  Finding your muse and following it isn’t any easier than my particular challenge.  I am sure of that.  What is my muse, then? 

My muse is my helpers on another side.  Not THE other side, because I don’t know if there actually is one.  I think we are all part of the same thing; we just can’t always tune in to the side we can’t see, touch or feel.  Except, if we allow ourselves the opportunity, I think it is possible to see it, touch it, feel it, even be it.  The “how to” part is a challenge.  Going deep into myself and allowing myself to have a bit of a “breakdown” (the breaking down of the barrier?) as western medicine calls it, is an okay thing, I think.  It’s that allowing that helps us see the truth, or at least, a possible truth.  The shamanic conversion I mentioned above.

We make everything so negative here in the west.  A breakdown is a bad thing, for which we need medicine to quiet the voices.  In some cases, yes.  But far too many of us are medicated too much.  We medicate ourselves out of possibility.  The possibility going to the void, touching it and returning, better for having done it.  To be, just to be.  It’s a powerful and true thing.  But I wonder. 

I don’t hear voices, but sometimes, the thoughts that I have are not my own.  They are vague whispers in my left ear, always calming, always quiet, always right.  If I would just trust them.  It’s not like voices telling me to do things that would hurt myself or others.  It’s the wise women in my life,  me that right now, right this minute, I am all right.  Stay in the moment, they tell me.

Saturday, December 1, 2012

Shamanic Conversion

I am in need of a shamanic conversion.  Or at least, a visit to somewhere outside myself whenever I get tired of being inside this body of mine.  This broken down racked with pain that can’t be controlled body of mine.  This constipated, stiff, going deaf body of mine.  This seldom had a healthy day body of mine.  My soul wants to be elsewhere.  I have actually been there before.  I have met my guides, I know who they are, but calling on them has become harder and harder.  And I'm still having withdrawal symptoms, as I wrote about earlier.  The fun never stops!

I would vacate this body quickly and permanently if I knew for sure it would be okay to do so.  In a heartbeat.  In a New York minute.  Anytime. Ready, get set…..stop.  Stop. I always stop.  Why?  Why do I stop?  Fear of having to come back to the desolate, ugly world again.  And again.  To learn what I didn’t learn this time, or the time before that.  Maybe things just get harder each time you fail to learn what brought you here.  Of course, even if we are “successful” whatever that means for you, how can we be sure we achieved our purpose?  How do we even know what that purpose is?   Sometimes, some of us think we know.  But do we?  Who’s to say?

I feel like I want to go back in time and correct all the mistakes, all the decisions, all the everything of my life.  While I do not blame myself for having this disorder, I do blame myself for not be stronger.  People tell me how strong I am, but I don’t feel it.  All I feel now is pain.  If being strong is defined by staying in a life of pain, then I guess I am strong, but I doubt that is the definition.  Strong is moving forward in spite of whatever challenges one faces.  Strong is grabbing on to life, whatever it brings you.  I did not do that.  I shrank from life, from the pain, from the challenges my body gave and continues to give to me.  Disorders, diseases and disorganized thinking.  Maybe that should be my epitaph.

I used to think there is no excuse for boredom; there is always something to do…read a book, write, watch a movie, meditate, call on my helpers.  For me, that’s about it, but it all takes up the time.  It’s getting harder and harder to pull off, though, and I dread the coming winter.  My poor hummingbirds are battling for the sugar water and Oliver is losing his mind watching them.  Watching them has gotten boring. I am definitely losing what little mind I have left.  I just watched a documentary on Joni Mitchell through Netflix.  Fabulous story for those of us who grew up with her by our side.  Maybe that is why I am blue.  So much time gone by, so little to show for it.

Here’s to you, Ms. Mitchell, who gave the world the most fabulous music, poetry and paintings you could ever hope for.  And in one person.

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