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:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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!

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.

Shred

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!!

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)

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!

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.

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.

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

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 song....it'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.

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: http://www.squattypotty.com/ 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.

Blessings

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.

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.

Nursing Home

I just spoke to my friend Ted, who’s in a nursing home due to the same NF problems I have, only more advanced.  Tons of pain, unable to do anything by himself (this was six months ago) etc.  Well, he wasn’t feeling well one day and went to the ER because he knew something was wrong.  He had a fight with the ER staff because they weren’t listening to him explain the problem he was having.  He insisted on a CAT scan and they found his appendix was ruptured.  Now he’s in a nursing home because he can no longer take care of himself. It is a nightmare, to say the least.  He told me to do everything in my power to make sure that doesn’t happen to me.

Ted has had dozens of surgeries.  Unlike me, he has rods in his back.   Like me, his pain receptors are full and nothing helps with the pain in any way to make a difference.  And now he is in a newer nursing home, which is the only plus because they keep it clean, but there are TWO nurses for 22 patients (his section) day in and out.  The noise level is through the roof from dawn until 10 p.m., the bed is so bad the staff must turn him during the night because of sores on his backside, the sheets are so thin you can watch television through them and the food?   This is a grown man who weighed all of 140 when he got there; now he weighs 120.  Once in a while, his ex-wife (who he’s close to now) or a friend will come by with some edible treats, but he doesn’t have much of an appetite anyway.  Mostly, he’s sorry he didn’t exit himself before it came to this.   Mostly, he encourages me to go that route if I was getting close.  How would I know?  He didn’t.  It was the last surgery that did him in.  The one he wasn’t expecting.  Mostly, he wants to die as soon as possible.

Well, who in the right mind tells themselves that’s where they want to die.  He said his biggest regret and fear is that that’s where his life will end.  He eats alone every single meal because everyone there is in their 80’s and they are either being fed, drooling or making horrible noises.  He did start to eat with everyone on Thanksgiving, when he looked up and saw his ex standing there, smiling. She had told him in the morning she was having Thanksgiving with friends, but surprised him.  She is having surgery next week and won’t be around for a few months.

As difficult as it is for me, and it is difficult, I must try and not go to the abyss, my favorite hangout.  I must try to hold on to what I do have, not what I don’t, or what I think I want, or need.  Because in the end, none of us knows the real answers to those questions.  Mostly, we don’t even know the questions.

This seemed like a better place for this John Prine song, rather than under "Caregivers"

The Abyss

Fredrick Natchez wrote (among other things) that if you stare into the abyss, the abyss stares back into you.  It’s true, at least for me.   I feel everything closing in around me when the pain reaches the heights it has been reaching.  Maybe I’m just freaked out about my upcoming appointment 45 minutes from home on Tuesday.  I really am scared about it.  Haven’t been in the car that long since my brother brought me back from the hospital in September.  

And when I start walking around the periphery of the abyss, the panic attacks come racing in, ready to give me a one, two punch.   And panic makes the pain worse.  Yesterday, not even lying flat was helping 

Wednesday, I had to dump Oliver's litter because he wouldn't use the box and that usually means something is wrong in there.  Pam was gone, and it was a lot of work.  I had other litter, thankfully, but now I need more.  All that work is probably why the pain is so bad.  At least I got to cancel his appointment with the vet; he's using the box now.

My brother came by just now with a food care plate from the Thanksgiving dinner I missed.   My sister is a phenomenal cook AND baker; the turkey was wonderful, the mash potatoes and the asparagus, all great.  But the pecan and cherry pie slices were incredible…only had a small bite of each, as I want to save them for tomorrow.  If I felt well, I of course would have been there, but feeling the way I do, I can’t say I missed it.  And therein lies the rub, eh?   I miss most of life because I’m in pain, but if I was well, what would I be doing right now?  And what am I supposed to be doing in the condition I am in?  Just  being?  To be?  I’m a verb, great.

Seriously, my dad is 88 and in tons of pain, but he still gets around and has no help except a cleaning woman twice a month.  And he’s friends with a bunch of people who have major health challenges.  They go to movies, out to eat….you know, doing life.  What’s wrong with me?  Yes, I’m in agony much of the time.  This new regiment isn’t the be all end all.  And family just doesn’t understand….my brother said he “thought the new program was working”  Well, it is if you want to call lying flat on your back all day but not in pain for two days each week working.  Yes, I go out for an hour or two each week, with my helper.  She offers to go without me, but I need to put it on my debit card.  Eventually, I’ll have to keep a bunch of cash on hand because I won’t be able to do it anymore.  I’m scared to death.  Well, I’d like it to be to death, but apparently, that’s not the plan.

I’m beginning to think we are date stamped at birth and we have to keep going until we expire.  So be it.  Fair, it ain’t.  But so be it.  Sorry, very bad day.  I was going to post this yesterday, the day I wrote it….but it was Thanksgiving and I was trying to be thankful for what I DO have.  I think of something to be thankful for every day, but when the pain is a 10, it’s hard

Sorry this reads so scattered.

Buzzing Bees

Happy Thanksgiving!  It’s patch day, always my worst day so it’s good I’m staying home.  As I write this, my feet are numb with pain.  Sometimes I sit up a little too much when I’m reading and suddenly my feet feel like there are hundreds of buzzing bees  inside of them and numbing up to boot.  I am going in to see the pain doc on Tuesday, the first time since my hospitalization in September.  I hate the thought of going all the way out there, the way I am feeling.  Pam is taking me and I’m a bit worried about that, because I’m not going to be in good shape and I don’t want to be giving directions, but I’ll have to, since she doesn’t know how to get there.  I really should just take a taxi.  I may change my mind.  She needs the hours, but I need to lay as flat as I can and it’s easier in the back of a taxi.

I just got an email from a woman whose daughter has the same challenges as I do; only she’s in her early twenties.  I first heard about her when she was very young.  Her mom posted on the NF forum site.  But I stopped visiting that site because it scared and depressed me.  However, we caught up and now she has a Caringbridge site, which is how I keep up with what is happening with her.  As bad as it is for me, and it IS pretty bad most of the time, when I hear about young people having pain issues as bad as mine it makes me so sad, so angry.

That’s when I start to question the existence of G-d.  Why would a loving G-d do that to us?  The answer is He wouldn’t.  Not the way we describe Him.  We always have an answer for that one.  We’re being tested, it’s not G-d but the devil, we did something in another life and it’s coming back to bite us.  It’s endless.  And despair is unacceptable because it flies in the face of the faithful, or the people who think they are.  But faith isn’t about books, whether it’s the Bible, the Torah, the Quran….it’s all the same.  Every single war has been, in the end, about religion.  And religion is NOT the same as faith.  Not by a longshot.

Anyway, this Thanksgiving be sure to give thanks (do it every day….really) for your health if it’s good and never for a moment take it for granted.  Just like everything else in life, it’s fleeting and could turn like that (fingers snapping). But do take advantage of legs that can walk, run and jump, arms that can lift and hug, toes that can wiggle, fingers that can write, and point, eyes that can see, ears that can hear and all the rest of it.  Use it.  Enjoy it.  If you believe in G-d, give thanks for it.  Pray, if you want, to always have it, but try not to feel cheated if you lose it.  And remember your prayers are probably answered.  They just aren’t always the answers you wanted.                     

Focus

Keeping myself positive and focused (on anything other than the pain, isolation, etc.) is always a challenge this time of year.  It’s the darkness; opening the drapes at 7:30 and closing them by four is depressing, let’s face it.  But I keep myself as busy as possible, reading, watching Netflix, writing, etc.  I am still on a self-imposed news blackout because I am still get very depressed and the pain sky rockets whenever I stick my toes in the water of what is laughingly called “the news” these days.    It used to be just a couple of networks that did more editorializing than reporting….now they all do it.  Today, Pam told me about the end of Hostess snacks.  Can’t say I’m sorry to bid them goodbye, but I am aggrieved about the loss of jobs.  And I admit, I use to have a Hostess cupcake every once in a while…rare and, but a treat.  Oh well.

My brother and his wife, Fran, came over Saturday night and took me out for dinner.  I was having an okay day, and I drugged up a bit too well; they each had to take an arm, as I kept stumbling.  And I almost fell going into the restaurant.  A couple people saw me and probably thought I was drunk.  Well, it was drugs, but I wasn’t about to stop and explain about my tumors.  It was great.  I so miss interaction with people.  Yes, I have someone come over a few days a week now, but it isn’t the same as a close friend or family member.  I’m not going anywhere for Thanksgiving….too long a drive, even if someone picks me up, and I’ll just go lay down when I get there, so why bother?  So seeing family this close to the holiday helped me a lot.

I’ll tell you, one of the biggest challenges in all this, besides the isolation, pain and forgetting one’s social skills, is the temptation of stopping to explain to total strangers why I need a handicapped space (when the symptoms aren’t obvious) or when I’m stumbling around like a drug addict (well, you know).  Hard stuff.

I wonder what makes me keep fighting.  When Oliver passes, assuming he does so before me (as hard as it will be, it will be easier for me, I think.  He won’t know where I went.  Of course, I don’t know where I’m going either (lol).

Speaking of Oliver, he is not well again.  He’s not evacuating the way he should be doing and I’m afraid it might be a urinary infection, even though it’s his bowels that have stopped.  I even gave him some lactulose (I used to give it to him several times a week, years ago) twice today and no effect.  He sees the vet tomorrow….and I leave the carrier out the day before so he isn’t freaked when he sees it, and he actually crawled in there and just stayed for a while.  That freaked me out.  He’s telling me he needs to go see the vet.  I know that sounds nuts, but trust me, he HATES that thing.

Today, this song has been going through my head.  Maybe because I just watched that FABULOUS Cole Porter movie, “De-Lovely” but I honestly can’t remember hearing that one….he wrote over a thousand songs in his lifetime.   Talk about contributing to the joy in the world.  I know there is lots of great music out there right now, but those songs?  The Cole Porters, Irving Berlins and all the jazz greats are gone but not forgotten.  I know Oliver is a cat; but he and I have an unconditional love for each other and have had from the first time I laid eyes on his sleek, grey tabby coat and beautiful green eyes, and he laid eyes on my bowl of food.  Love.

Methadone Withdrawal

Thought I’d share some information about methadone and the withdrawal that I am still experiencing, six weeks after I took my last small dose. 

It hangs around in the body for a very long time, depending on how much you were taking and for how long. I know that for those of us in pain, it’s a necessary evil when other things don’t work.  And it did work for me for a long time….too long.  Twelve years at 60 mg a day.  Initially, it was 100 but I do other things like reiki and acupuncture, massage and whatever else works but doesn’t harm the body.   So in doing those other things, I got it down to 60, which is still high (unless you are nuts enough to do it “recreationally”   Never understood that.  It’s about as fun as being run over by a train).

Anyway, I thought I was done with the withdrawal thing, but this was a stressful week and I had insomnia, flu-like symptoms, the chills; all withdrawal symptoms.  I just saw my healer who does acupuncture, these incredible essential oils that help with various things (like constipation, pain) and she told me that it could indeed be hanging out in my body.   She said the remains of it find a place to hang out once you stop taking it, and eventually, your body expells it, which is why you get the withdrawal symptoms months after you stop using it.  She said that I am much better in terms of my flexibility and her ability to work on me and get results, but I may still have a “methadone day” for months to come.  Not nearly as horrible as it was at first, and because I still use opiates for pain, not as bad as it would be.

I think the movies always make it look like it’s horrible for a short time and then it’s gone and you’re fine.  Not even close.  BUT, there is relief, there is hope and you will get it out of your system if that is what you want to do.  However, if you are trying to find something to help with your pain due to NF tumors, talk to your doctor about the fentanyl patch with morphine as the break through med.  I’m off the diladid too, and morphine uses less opiate than the diladid so they were worried it wasn’t going to work.  But pain receptors work differently for different people.

I know this is a never ending battle and it could not work at all at some point.  As it is, it only works if I lay flat all day, every day….very difficult emotionally.  I can get out for short periods to pick a few things up at the store, and I did actually have two meals out over the past three weeks, which was a huge deal for me because sitting is torture.

I have no plans for Thanksgiving.  Too hard to get to my sister’s and what’s the point?  I’d be flat on my back the whole time after the 45 minute drive out there….don’t want anyone to pick me up then turn around to take me home.

The Annas

Am having a bad day today pain wise…last night I actually had dinner OUT with a friend!  The second time I went out for a meal in two weeks.  I hadn’t done it at all since long before my hospital stay and change in meds, so it was refreshing.  I give thanks for that, with all my heart.  I am a strong believer in acknowledging the good, especially when I’m such an expert at acknowledging the not so good.

But I’m paying for it today.  Pam was here, and then her supervisor was here to do an assessment of her work.  She does that every six months, I guess.  It went fine; I told her about the key thing and said everyone makes mistakes, and although it was a scary one, when I weigh the pros and cons of having her with me, the positive far outweighs the negative.

In the meantime it seems like no species can get along with one another.  Remember the hummingbird feeder I got a little while ago?  Well, in the winter, in Washington State, only one kind of hummingbird hangs around through the cold.  The Anna.  At least that’s what I read on the internet.  But don’t quote me, I’m hardly an expert.

So I’m laying here, reading and watching the hummingbird feeder for action, and I could have sworn I saw more than one.  But I only see them one at a time.  When they do arrive at the same time, it’s like crashing fighter jets.  They chase, they dive, they ram each other.  Very exciting.  I should be a bookie.  Trouble is, I’d need a camera with a stop action feature.

I should name one “HummingCon” and the other “HummingLib” when they “Come together like a couple of taxi’s on Fifth avenue” (that was a line from “Rear Window” when Thelma Ritter’s character, Stella, was trying to explain to Jimmy Stewart’s character, Mr. Jefferies, what love should be like.

Yeah, right.  Well, whether these guys come together like a couple of taxis or a couple of fighter pilots, it looks like it hurts.  Can’t wait for spring, when I’ll get different species with pretty colors!

Caregivers

I wish I had a crystal ball to tell me why and when my pain levels shift so much.  Thursday, it was like there was nothing wrong with me at all…that feeling lasted about five hours and I thanked G-d for every second of it, believe me.  I don’t just pray for help, whether it’s for me or someone else.  I make sure to give thanks for it if my prayer is answered the way I want (and if not, keep in mind my prayers ARE always answered, just not always the answer I was shooting for).

Today was a day from Hell.  Nothing was keeping it at bay; and I had a couple things to do that required I go out…without help.  I did it, but it wasn’t easy.  And it was patch day today, so hopefully tomorrow will be better.  The day following patch day is usually the best but the weeks preceding the election were a nightmare.  Don’t get me started. 

So, I think I need to keep in mind that what goes on in my body is a reflection of what is going on in my mind.  Our bodies are receptacles of our emotions, and holding on to anger, frustration, fear, etc…..all the “negative” feelings; makes things so much worse.  You don’t have to have a tumor disorder to know that, right?

My helper made a very scary error the other day.  I want to take partial responsibility, but then again, I have her because there are certain things I can no longer do, AND, I get foggy from the drugs.  We were going out to do errands (my good day) and we stopped to get my mail.  Two hours later, on the way home, we passed the mail boxes and I noticed my mail door was opened and my keys were dangling from the lock.  I yelled for her to stop, and got out to retrieve them.  She was ashen.  She also had been driving kind of loopy.  I took a deep breath and just said “Well, we could dwell on what could have happened, but nothing did, so let’s just drop it for now” But I also said how disastrous it could have been; my box identified who I was, and my house key was on it.  And all my drugs are in the house.  Disaster with a capital “D”.

She immediately told me I had every right to fire her on the spot.  I said lets’ just take a breath.  I did acknowledge it was a bad error, and that I really, really needed her to pay attention.  She gets side tracked easily.  But she has had a very hard life.  People don’t do this job unless they have to.  I mean, there are probably some care givers who enjoy it, but there isn’t much to enjoy.  The woman is a cleaning machine.  My home was never filthy, but it was messy sometimes.  I guess I didn’t see the down deep dirt until she showed up.  It sparkles.

And I needed to take a couple days to balance things in my mind.  I also needed to ask her if she was planning on telling her supervisor, who happens to be coming on Monday to talk to me about her and how I am getting on with her.  She is supposed to do it every once in a while so it’s no big thing.  And I’m a client, but I’m her boss and get to choose which company I want to work with, as long as they contract with DSHS.   I can also have a person of my own choosing who works independently with DSHS.  That I’m not so thrilled about, because if they can’t make it, there is no one to replace them on that day, whereas with the service I use now, takes care of that (if they can, but they usually do)

I talked with my dad about it; he’s always wise about this stuff.  At first, he thought I should find someone else.  But when I called him back, I told him I thought about it and realized I’ll be trading one problem for another because no one is perfect and this is a tough job.  For the most part, I really like this woman and she has been so good to me, and I to her.  She’s so willing to jump in there and do whatever.  She brings me little treats….like flowers from her garden, chocolate, smoked fish that her son makes….and I give her the dark meat from my roasted chicken because I don’t like it, and other food items I decide not to eat….all of it good and not past the due date...

So what if I have to repeat myself sometimes.

And remind her where to turn to get me where I need to go, even if we’ve done it a few times.

And find things that don’t belong where I found them (like a sponge in the dish cupboard)

The key thing was bad….but I know it won’t happen again.  If it does, my decision may be different.  But the last thing I want to do with her is put her on
“probation” She’s nervous enough.  And I am NOT a task master.

I just hope and pray I stay cogent until the end.  And have all the people I love still in my life.

Blessings

No Difference

The pain has been non-stop.  My new protocol works for a day or two, then doesn’t work anymore.  And yesterday I could find nothing to distract myself from what I assumed was a nail biting election.  I was on news blackout because it just increases my pain when I’m stressed.  My phone didn’t ring all day so I convinced myself it was bad news for Obama.  My dad finally called about 6 (PST) and said we’d probably not know until tomorrow.  Then he called a few hours later to tell me to sleep well.  I did.

My dad has been a lifelong Democrat and champion of the civil rights movement.  I recall when I was about six years old, during the Kennedy election, we had a sticker on our front door with a black house and a white house next to each other, representing integration.  We had a black family over for dinner as part of some exchange program.  I remember thinking, “Why are these strangers here?”  Not that they were black, but that we didn’t know them.  Our neighbors were very ticked off at my dad but he stood his ground, bless his heart...  He had an upstart business and it was difficult for many years, but he never wavered from his beliefs.  Still hasn't.

He feels that way about everyone.   I remember telling someone that my dad and I saw Brokeback Mountain together when he was visiting me from Minnesota.  Most asked how old he was.  He was 84 at the time.  Everyone was knocked over when I said we had long talks about the movie and how awful it must have been for the characters, and for the  people living in a lie because of fear.  No one could believe a guy his age felt that way who was straight.  We had a lot of knock down fights when I was growing up, but never over those issues.  He is a strong supporter of gay marriage and legalizing marijuana.  He knows of my challenges of course, and knows I smoke it for pain and did so recreationally when I was younger.  Of course, when I was 17, he didn’t know.

Once, when my folks were gone for the day, a friend came over and we made loaded brownies for a party.  They were cooling on the table when my dad came home.  He asked for a piece.  I said no, dad, they are for a party.  He said one piece?  You won’t give your old man one piece?  I felt awful, but couldn’t believe he didn’t notice they were more green then dark brown.  If he had known, it would have been WW III.   Can’t say he was open minded about me taking drugs.

I just hope the next four years brings what Obama promised in the first four.  I get that he inherited a huge mess (Clinton left Bush with a trillion dollar surplus and peace...Bush, on the other hand, left Obama with a trillion dollar deficit and a war)  and had almost no support from either side of the isle….I hope that changes, because until people stop digging their heels in, until we stop trying to buy elections, until we CAN have an election where gazillionares aren’t throwing billions at the candidate, until they are no longer rigged one way or another….until all that happens, we are going to continue circling the drain…and eventually, we will go down just like every other country we profess to hate.  We fight wars to “bring democracy” to the “poor souls” who live under dictatorship….with people like Bush at the helm.   But the big difference between “us” and “them”?   Nothing.  Not one single thing.  Not when we behave the way we have been behaving.  To each other, and to the world.

Sandy

I am having profoundly conflicting feelings about the super storm, Sandy.  Anger at the news coverage, which makes an awful situation worse by further dramatizing everything (as if it isn't bad enough). Anger at the helplessness I feel due in part to my physical challenges.  Anger at our 20/20 hindsight.   And heaven help me, angry at some of the victims who by right, should feel frustrated beyond measure, but who, due to fear of the unknown, are not approaching this with more patience.  It has been less than a week, and one woman looked like she would have an aneurysm because she thought she was going to die from the elements.  And some have died, so her feelings are not without merit though she was making it worse for herself.  I'm an expert at doing that, so I know it when I see it

Then I think about the huge number of people who live in the elements without food, without water and certainly without electricity the whole of their lives.  They are used to it, it’s true.  But our dependency on a crumbling infrastructure is horrifically frightening.   Global warming (yes, Virginia, there is global warming) coupled with the natural changing planet, will bring more and more of these events, closer together.  In the early part of last century and up until the late half of it, when a natural disaster hit somewhere on the planet, millions of people sent millions in relief, as well as volunteers from every part of the globe.  There are now too many fires to put out, and they are coming too fast.

And so starts the blame game.  We have a general election next week, and given the impatience of the people suffering, they will most likely blame those in office and vote accordingly.  As was true with his first four years in office, Obama could not fix what took Bush eight years to destroy.   Clinton left Bush with a trillion dollar surplus, and eight years later, it was a trillion dollar deficit.  Which Obama inherited.  Lord love a duck, he could not turn it around in four years.  Duh.  With almost zero support from either side of the isle (conservative democrats), he is getting far less support than he deserves.  Is he a great leader?  No, I don’t think so.  He isn’t as strong as I thought he’d be.  But then again….no support.   I just don’t want to see the emotions of democrats boil over on Election Day, blaming Obama for a blameless situation.  They can only fix things as fast as they can fix them.

Listen, I grew up in Minnesota where yearly, blizzards would stop the world from going around for days at a time.  Sometimes, without power.  I live in Seattle now, and 1 inch of snow use to make me laugh because everything shut down.  I don’t laugh anymore.  I live on a hill and can’t get down when there is ice and snow.  I remember my first year here, and I had the radio on while I was dressing one morning and heard this list of school closings.  I thought I had a radio station   back home.  I peered out the window and saw nothing.  Not even a heavy dew.  It’s all relative.  Well, not all.

That storm is beyond my imagination.  I think about my meds and what I’d do when the big one hits (earthquake, flood?).  And I’m sure millions of those people ARE in my situation.  G-d bless you, each and every one, sick or well.