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Sunday, September 30, 2012

Letter to My Body

I wrote this years ago but never posted it.  I cannot believe how much things have changed.  I’m on Medicaid.  I have help.  I’m off methadone and on fentanyl .  And I’m still in agony unless I lay flat.  Also, a new wrinkle: Insomnia.  Big Time.  Could be withdrawal.  Hopefully, it will return.  I need my sleep.  When I came across this, I struggled with whether or not to post, because I try to be upbeat.  But I want people out there who struggle with NF or something else, to know you are not alone.   And I have to keep reminding myself that altough Aimee Copeland is an inspiration, she is 35 years younger than me and, here's the most important part:  I am not her, and neither are you.  We all fight our battles in our own way; there is no shame in crying or feeling frustrated.  Try however, to steer clear of despair..

Letter to my Body

I am writing this from my heart to the rest of you.  I work so hard on not being angry that I often don't see the rage.  Or I make it such a bad thing, the rage, that I push it aside and strive for feeling 'peaceful' and 'thankful' and all the rest of the 'feeling good' feelings.  After all, I have food in my belly, a roof over my head and family and friends, which is more than most of the planet.  I get that.  And I also get that it's slipping away from everyone, not just me, but that's not what this letter is about.

This letter, dear body, is about my rage.  I know it's not your fault, but I am very angry at the way I am feeling, at what you have put me through physically, and what you continue to do on a daily basis which makes living a full life not possible.  At least not for me.  I get other people manage to have full lives in spite of physical challenges.  I am not them, I am me.  And this me is angry.

Let's start from the feet and work our way up, shall we?  Lately, and this is somewhat new, my feet have been driving me bonkers.  No matter how I rub you, you hurt me muscle wise.  But that's not the main thing.  The main thing, is you, dear toes, who vanish from me when I touch you.  You are so hard to feel, it's like I'm touching another person's toes, not mine, not you.  So as a result, my balance is way off, my gait moves forward so fast I fear I will fall (again).  Very scary. Why can't I feel you?  I know, I know, it's the tumors, the damn tumors.  Let's all gang up on the tumors, shall we?  I'm all for it, but first, I need to address what hurts.

Moving upward, dear calves and thighs....both sides.....dear legs in general; this is where most of the pain resides.  Why do you torture me so?  What did I do to you?  You are just relentless with the pain that radiates through you, Mr. Tailbone.  Some days I can't walk, it's not worth it.  Other days, I push myself and pay for it big time later on.  That's when no one sees me.  Sees the real pain.  When I'm with people, especially my family, I say as little as possible, though to them it might seem like moaning and groaning.  Who knows?  Soon, I don't think I'll be able to walk. Here is why.  You disappear on me more and more often.  From my hip on down, just GONE.  I bang on you and scream and it comes back but one day I fear it won't.  I call the doctor, they do the MRI's and then they tell me the tumors haven't grown, 'huh? I wonder why you are in so much pain?"  And they don't believe me, I think.  If they can't see a problem, there is no problem, that's what they think, I think.

I am very scared right now, and very angry at the whole lot of you.  Ganging up on me like that.  Breast cancer,achelasia (another rare disease, as if NF isn't a rare enough disorder) and now possibly thyroid cancer.  But I'm keeping you, dear thyroid.  I pray you aren't cancer, but I'm going about it a different way (vs having it removed).  I do reiki anyway, so I am increasing that work, I'm seeing a healer, and what the hell, if it's cancer, I guess its cancer.  They want to do chemo and radiation if it is, and I'm not going down that road.  Mr. Immune System isn't very strong, are you?  I take so many supplements to help with all that is wrong and it’s still wrong.  Very wrong indeed.

But I want you all to know how angry I am at this life you have given me.  My friends and family all work, travel and have lives.  And yes, they have challenges.  They deal with them and get to the other side.  Where is my other side, dear body?

Work.  Relationships. Travel.  Children.  Not sure I wanted children anyway, but the option that is what was ripped away from me.  Do I have things to be thankful for?  Hell yes.  But I am furious, as I watch the beautiful day unfold from my window that I cannot do but one thing in a day without horrible pain.  When I have the audacity to behave 'normally' and try and do my shopping AND go to the library AND get a haircut or whatever, that it flattens me. 

I am terrified too.  Terrified at what lays ahead.  I want to die before anything else happens.  I hurt so badly.  And I am so angry at you, dear body.  You have betrayed me as surely as a spouse betrays his/her partner by cheating.  You have betrayed me as a parent betrays a child by molestation or neglect.  You have betrayed me as a business partner betrays his partners by embezzlement.  Or as a president betrays his country.  Betrayal is a horrible thing.  But unlike those other betrayals, I cannot get away from the perpetrator because we are connected.  I can only meditate away from you for short periods of time.  I have tried pleading, I have begged for forgiveness for whatever I did to make you  this way...but nothing works.  Not prayer.  Not meditation.  Certainly not western medicine.  I am a freak.  An angry freak.

Yes, I have accepted this for the most part.  Maybe it's not your fault.  Maybe you, too, are crying in desperation.  I don't know.  I don't know who to be angry with anymore.  G-d, if He exists, surely doesn't know I exist.

It’s  beautiful outside....mid-sixties, will reach the mid-seventies this weekend, not a cloud in the sky.....a perfect day for being outside and enjoying the weather with friends or family.  That's a guess.  I'm inside.  On my couch.  Lying flat,  pain.  Boo effing hoo, right?   My legs and arms and fingers are twitching like mad.  I have seen too many doctors to count.  But in the end, what's the diff?

I am so tired of forcing myself to be upbeat.  I must be upbeat or people don't want to talk with me, and my phone barely rings as it is.  Of course, if I were healthy, chatting with those stuck inside really wouldn't be a priority for me, either. There are so few beautiful days in Seattle; one must make the most of them when they happen.

Oh, dear body, why do you torture me so?  What are you trying to tell me?  I have been attempting to do my Mantra on healing every day, but it's hard.  I listen and listen and I read the words, but it just is so hard to say.  I can do parts of it, but I can't get it down.  Perhaps just listening helps, too.  Of course, I started doing it because of the nodules on my thyroid gland.  More problems.  If it is cancer, I'm not going to treat it the way they are recommending, so what's the difference?

I never know what to do....sometimes, I want to fight like a champ, other times, I just want the chips to fall....and they are falling... like leaves off a tree, they are falling off me fast and furious.  And the world is moving so far out of alignment with the Universe that all I want is to get my body is trying to fulfill that wish, I guess.  Most of the time, I just think of what is in front of us as human beings and I want, before it gets any worse.

And personally, I'm nothing but a burden to my family, my friends, and the world.  I contribute nothing, and I take all that I need.  I do work on keeping expenses down, and I worked like crazy to get the measly amount that I get from disability, but I do get it and it does help. 

I can’t ask for any more help from my family.  They are hurting too, and paying my rent and I appreciate that beyond words.  Its nuts.  I don’t want to play anymore.  I want to take my bats, my balls and go HOME.  Please?  Or just make it not hurt.

Thursday, September 27, 2012


Today’s the day!!  Down to ONE 2.5 mg of methadone… Sunday, hopefully, I’ll be done.  Feeling kind of icky but I think it’s because I had to take Oliver to the vet and I ended up leaving him there because he needs his last two teeth pulled. 

Poor guy….he was probably in a lot of pain.  I did notice these last couple weeks he hides a lot more than usual.  But I thought it was because the vacuum is always out and like most cats, he runs at the sight of it.    Whenever Pam is here, she vacuums.

I miss him like crazy already.  I shudder to think about when he passes.  He’s seventeen!!!  I hated to put him through the extraction, but the vet said there is a big hole in one of his teeth and the other one didn’t look much better.  I trust her, she is very conservative.  And she is really ticked off that the medication he is on is unavailable for an unknown amount of time.  She said it’s cheap and a lot of cats are on it; I had to order the compounded version so he won’t miss any doses and it’s a buck a pill!!!  The other stuff is 17 cents online.  But you can’t get it anywhere right now.

Anyway….I’m in a lot of pain right now so I’m gonna watch a movie

Tuesday, September 25, 2012


I had this fantasy the other day which I condensed and wrote about in my last post.  If only, right?

Well, I’m down to two methadone a day now….on Thursday I’ll go to one for three days and then hopefully, be done with it.   Still taking my breakthrough meds to help with the pain and the withdrawal.  And I have insomnia big time…again, probably the withdrawal.  This stuff is very hard to shake, and I’m going down faster then normal, but I have the patch and my breakthrough.

Now my nurse wants me to go out as long as I can tolerate it to test it.  I had a really good morning yesterday and Pam took me to the store, then I stopped at the library to return a book.  The day before I took myself to Half Price Books and got a book.   I was in tons of pain when I got home; 45 minutes was my best time.  Hope to improve on that.  In pain now, but may go out later.  We shall see.

In the meantime, no “Men in Black” came to my door to whisk me away and fix me.  So I keep meditating on what I am supposed to be getting out of this.  I know it’s something.  Something important.  But no one is telling me, even though I ask all the time (my helpers on the other side are mum too).

Things are quite boring in this neck of the woods.  I think about six months ago, when it really got bad and I could barely move and wanted to die all the time.  Then in August, I finally hit the rails and needed an ambulance to take me to the ER, spending 12 hours there and four days in oncology, in withdrawal because the pain doctor I don’t normally see screwed up.  How far I’ve come since then.  The bills are outrageous, but my job is to keep talking to them, making arrangements and letting them know Medicaid is my secondary now.  Yikes.

So I guess the lesson is not to make a permanent decision for a temporary situation.  Although my situation is far from temporary, the pain has eased as well as the bowels, so long as I stick to the plan.  But each plan only works for a week or two, and then I have to finagle another plan.  But I have the Restoral if I need it, although it didn’t work the first and only time I used it.  I think it’s because I had diareha the night before.  Silly me.

I still want to go HOME and badly.  But clearly, it’s not my call.  It could be, but here is what I decided. I want to be feeling “good” if I decide to end it.  I don’t want to be in a state of faithlessness or despair.  I want to be ready to be done with it, but NOT angry about it.  It’s counterintuitive, I know, but here is the thing:

The word “decide” is basically ending all other options.  Like “suicide” is ending your own life.  “Homicide” is ending someone else’s life.  “Genocide” is ending many people’s lives.  And so one.  So be mindful of what you choose.


Saturday, September 22, 2012

No Escape

I’m lying on the couch as I normally do, trying to tamp down the pain, when there is a knock at my door.  I answer it.  Two men wearing dark clothes and sunglasses are standing there.  ‘Sherri?’ one says.  I squint my eyes, ready to slam shut the door.   Why hadn’t I looked out my peephole?  Guess I thought it was the neighbor,whose door I had knocked on earlier to ask if he could help me with opening the flue in my fireplace.  His daughter said he was sleeping.

“Who are you” I ventured
“Come now, you’ll be back before you know it”

I have no idea why, but I turned and shut the door, locked it, and went with them.  My memory is sketchy at this point.  I was somewhere else instantly.  I have no idea where.  Everything is very bright.

“We’ve been watching you for some time now.  We have chosen you”
“For what?” I ask, shaking with fear
They smile.   When you awaken, you will be in perfect shape. No more tumors, no more pain, no more need for the drugs you take, and no withdrawal from stopping this quickly

Suddenly I’m staring at my front door from the inside, wondering why I went to it.  It’s almost time for my medication.  Only I’m not in pain.  Not one tiny bit.  I’m not numb, tingling, burning, searing, exhausted nor constipated, I can feel that.  And I can tell I’m at what was my normal weight, 112.   I can feel I have to pee and I do so without my catheter.   What the heck?

On Monday, after having the weekend to absorb this, I call my pain doctor’s office and make an appointment for Tuesday, the only day they are in clinic.  They work me in because I say it’s urgent.  I get there, and when it’s my turn, I ask that the nurse and doctor be in the room with me the same time.  They come in.  I look at them and smile.  “You won’t believe this” I tell them.

Wait.  Does this mean I have to go back to work?  At my age?  Doing what?

Problems.  You can't escape them.

Friday, September 21, 2012

Could Have Been Worse

In spite of what the pain nurse told me (not to drop another 2.5 of methadone if I was feeling withdrawal symptoms) I’m dropping it today.  I would have dropped it today anyway, and yesterday I wasn’t having withdrawal symptoms….just the day before.  But I figure I may experience them anyway, so why not buck up. I’ve bucked up to so much it shouldn’t be difficult.

My niece is coming over with lunch and to visit before she takes off for college next week.  It’s weird.  Only one niece is still in high school but it’s her last year.  Time.  It’s so interesting if you look at it with an open mind.

So I feel like crap today, my stomach is a mess, my helper was here for an hour and I sent her away because she does such an incredible job there was nothing to do and I wasn’t up for a trip to the store.  Maybe if Ellie has time today she can take me.

In the meantime, I started thinking about how different my life is compared to less than a year ago.  And before that, and before that, etc.  My body and my lifestyle have changed dramatically, but in increments….kind of like how I tricated up with the methadone, and now I’m going the other way...  I’m not sure if a horrible accident that left me like this would have been worse than the way it happened.  I think it would have been.  As it is, I feel like I’m a tree, and leaves are dying and falling off of me...  And there are great big piles of leaves all around me now.  Not a great comparison, but you get the picture.

The changes sadden me greatly; soon, I will be unable to drive at all.  As it is, I only go to the mailbox and maybe the store, if I’m up for it.  But there is only one day in three that I feel able to do those things.  That’s the day after I change my patch.  I do it at night, because it takes 12 hours to feel the full effect.  Then it peaks and starts going downhill.  Oh well.  This is my life.  And I still wouldn’t trade it.  I’m here to learn something, I’m still unsure of what that is, but I hope I can make it until my life flickers out without my help.

Thursday, September 20, 2012

A Dream Within A Dream

Okay.  I’m at four doses of 2.5 of methadone and today I change the patch and should drop to three doses.  But yesterday was very tough; it was 70 degrees outside and I had on sweatpants, two sweatshirts and was under a blanket.  Shivering.  Withdrawal, no doubt.  I understand there is a flu bug going around; got a flu shot yesterday.  But I’m going to assume its withdrawal.  I spoke with my nurse and she said if it continues to be bad today, don’t drop it until Saturday….I usually do it the day after I change the patch, which would mean Friday.  I’ll see how I feel at the end of the day.   I want to tough it out because eventually, I’ll have to.  She told me my body is emptying the last of the methadone and that’s why it’s tough right now.  I just want this junk out of my body.

Of course, she keeps pushing me to take the diladid and I’m talking two or three a day, which is a huge increase for me.   Knowing it’s withdrawal makes me LESS panicky because I’m aware of what it is and not some unknown thing.

Still, my bowels have gone back to being difficult, after a week respite.  I think my body recognized the lack of methadone, but now that it is lower doses, it’s adjusting to that.  Or it’s the diladid.  Or it’s who knows what or why.

My appetite fluctuates and there are times I just can’t think about food.  And when I do feel a twinge of hunger, I eat.  Not a lot, but then, I lay around all day so I don’t need a lot.  My sister was telling me how much I need to eat to gain weight, but her measurements were based on an active person.  I’m not losing weight, so that’s good enough for me right now.

People don’t understand many things about chronic pain, especially the demonic, non-stop incredible agony pain that nothing seems to help.  It takes away your appetite, you enjoyment of anything, and yes, your will to live.  But I fight it all.  And try not to compare.  I was comparing myself to Aimee Copeland, the young woman who lost a leg, the foot on the other leg and both her hands to a flesh eating disease.  She’s actually WALKING now, with a walker a prosthetic and determination most people don’t have.   But it’s ridiculous for me to do that.  Our situations are vastly different.  Pain lives on its own planet and it’s a disease in and of itself.  And until the medical community gets that, we shall continue to be in pain.

A Dream Within A Dream

Take this kiss upon the brow!
And in parting from you now,
Thus much let  me avow -
You are not wrong, who deem
That my days have been a dream;
Yet if hope has flown away
In a night, or in a day,
In a vision, or in none,
Is it therefore the less gone?
All that we see or seem
Is but a dream within a dream

I stand amid the roar
Of a surf-tormented shore;
And I hold within my hand
Grains of the golden sand-
How few! yet how they creejp
Through my fingers to the deep,
While I weep-while I weep!
O God! can I not grasp
Them with a lighter clasp?
O God! can I not save
Once from the pitless wave?
Is all that we seem or seem
But a dream within a dream?

Edgar Allen Poe

Monday, September 17, 2012

The Frying Pan Solution

I'm Having a challenging time right now.  Still tricating up the Fentanyl and down the methadone.  Hope to be off the methadone within two weeks, though the nurse told me the last 2.5 mg can be the toughest.   I do tough, no prob.

So….she said my prescription for my fentanyl was in Friday’s mail.  Didn’t come Saturday.  Thankfully, today she called my pharmacist and faxed it in so I’d have one to use today (I’ve been using the same one for 10 years and they know me), when I change it because I didn’t want to risk it not being in the mail. And sometimes, I don’t get the mail until after 6.   So guess what?  It wasn’t there.  I had gone to pick it up with my helper and promised the pharmacist I’d come back with it.   So I called my nurse to tell her, and she called back telling me IT WASN’T EVEN MAILED ON FRIDAY.   I shudder to think what would have happened had she not faxed it.   So I called the pharmacist and said I’d bring it in immediately when I get it.   She wasn’t worried, since she only gave me one which will last three days.   I’m sure I’ll get it by Wednesday at the latest….and I change again Thursday.

Kind of got yelled at by the nurse today because she wants me to drive there to get the prescriptions since we are still tricating up….she just doesn’t get it about the drive (45 minutes in agony) let alone trying to find a driver.  Even if I used a service, sitting is demonic for me and I’d end up screaming in agony upon arrival.  She insisted everyone does it this way and maybe I should switch doctors.  We got back to being reasonable but it was a tough conversation.   I kept asking her why she was so angry, because I was speaking reasonably.  She agreed I was, but she just hated hearing “I can’t do this, I can’t do that”   Well guess what?  This isn’t about WON’T it IS about “can’t”.   I can’t believe that as a nurse in a pain clinic, she doesn’t see that.  I’m guessing many of their patients don’t’ have it nearly as bad as I do but demand far more.  If anything, she gets upset that I don’t take enough of my meds.  Well that’s behind me.  

I’m trying to be positive but I’m worried about my weight, lack of appetite, increase in pain….it just jumps around.  And today, even though I just changed the patch, is miserable.  It takes 12 hours for the new dosage to kick in.  Just hit me over the head with a frying pan and knock me out for 12 hours every third day.  Is that so much to ask?

Wednesday, September 12, 2012


Yea!   I’m up to 100 mg of Fentanyl starting last night….and starting today; down to 20 mg of methadone…..just three weeks ago I was at 60 so I’m hopeful that by the end of the month, I’ll be off that nasty stuff.

My bowels kind of started working again for a while…last two days hasn’t been so good, but it will clear up again, I hope.  I’ve started on full spectrum probiotics which I take before every meal, and I started drinking coconut water.    And prune juice.  I think I overdid the fruit and that is why I am backed up.  The pain doc nurse, who I am indebted to for her coaching me on not getting so worked up about my bowels and my eating, keeps pushing the fiber, but I know when I overdo it.  Too much fiber is NOT a good thing with my particular problem, as I have mentioned a few times.  Other than that, it was great advice…because I have NO appetite when I get up, so I drink my juice and my miralax and an hour or two later I eat oatmeal or cereal with fruit and by noon, I’m eating a sandwich…..with chips. 

When I got home from the hospital I dropped a few more pounds and was down to 98, but I’m up to 102 now; by goal is a pound a week until I reach 110 or 112 which is my normal weight (high being 115).  So here’s to crossing your fingers and your toes.

Today the pain is much, much better.  Of course, I am still flat on my back….I’m hoping that with this increase, I can go out and about without being in agony….out and about being trips to the grocery store and doctor appointments.  I got an increase in hours from DSHS because it was so bad a couple weeks ago, I really thought I’d never recover.   I still need help but I’m hopeful I will have limited ability to do things I use to be able to do, even with the pain.  We shall see.

In the meantime, I just heard that a friend of mine has stage 2 Chronic Lymphatic Lymphoma.   So my thoughts and prayers are with her right now.

Is wanting good health the same as wanting a new car, or a trip somewhere, or anything else?  I mean, it’s the “I wants” that kill us, figuratively.   But truly, is it the same thing?  I wonder.

Sunday, September 9, 2012

Desired Destinies

How many of us want the destinies given to us?  How many of us even know what that is?  We think we might know (It’s our destiny to be together/alone/this career, etc.) but do we really?  I’m not sure we ever find out because it changes, just like everything else.

And how many of us want everything we have?  I don’t mean having everything we want…..few of us do, and even those who think they have everything they want in a particular moment seldom sustain that feeling.  Because there is always more, always something new around each and every corner that we think we can’t live without.  Mostly, we still live.

But wanting everything we have….that’s the challenge.  Personally, I can tell you right off the bat that I don’t want NF.   And I certainly don’t want everything that goes along with it; agonizing pain, dysfunctional digestive system, inoperable tumors, isolation due to the pain…..and on and on and on.  In fact, there is very little of what I have that I actually want.  My friends, my family, my cat.  My books, my music, my movies.  Mostly, I feel you can shove the rest.

And that might be the biggest mistake anyone can make...  Throwing away that which is profoundly inconvenient, hurtful and useless and empty-feeling (so we think).   But the painful (no pun intended) truth is, my body doesn’t really know what is useless to me and my soul doesn’t either.  I haven’t a clue what I am supposed to be learning, but I’m learning something, that’s for sure.  Kindness, patience, understanding, empathy….these are all things I strive for not in spite of my condition but because of it.  And I fall short 90% of the time.  So I pick myself up, dust myself off and try again the next time the challenge presents itself.  I can hear the little voice whispering in my ear reminding me, but I often yell over it.

 We can’t know much of anything when it comes to being here, living this life and seeing all the misery around us.   The good too, but it seems to me that as I age, the good things became more rare.  And I don’t mean because of illness and personal challenges.  I mean in general.  Perhaps it was always this way and the digital age just made it that more apparent.  We instantly know what happens halfway across the planet.  Once again, I’ve weaned myself off the news because it’s just too damn depressing, and coupled with my pain, it makes it that much worse.

Two weeks ago I was ready to give up my cat and move on to the great beyond.  The pain was in the stratosphere and it seemed very little was being done and in fact, damage was done because of the rapid removal of methadone.  But they have increased the fentanyl (after several screaming phone calls….see what I mean?) and are dropping the methadone in a reasonable timeline.  I am no longer in crisis, though my nurse thinks I still am drug wise.  I still need a lot of help and can’t go anywhere without coming home in agony, so it’s not there yet, but it’s a far cry from where it was.

Patience, she wrote.


Wednesday, September 5, 2012


Well, after a difficult conversation with my pain doc’s nurse, she confirmed that they would indeed be upping my fentanyl.   She told me that the reason they didn’t increase it while they were decreasing the methadone is because some people respond just fine that way.   They can’t possibly be in the kind of pain I’m in if that’s the case.  So once I’ve had a chance for the 75 mg of fentanyl coursing through my bloodstream, I will be dropping my methadone even more….a bit at a time.  And of course, my breakthrough meds will be the same.

I keep flipping out about my bowels but she kind of lectured me about not doing that since I have the “big guns” at my disposal now (Resterol).  I want to try like heck to avoid using that but if I have to, I know I have it and it won’t mean a trip to the ER which is good.

I’m hoping and praying that they don’t pull the rug out from under me with regard to Medicaid.  I already had an issue with it when I went to pick up my increase.  They were giving the pharmacist a hard time about it, but she gave me a few to get me through and then she said she’d fix it.  God love her, she’s been my savior on a number of occasions

The nurse told me not to obsess about my bowel situation and eat what I want when I want.  I have NO appetite when I wake up and I have to honor that for now.  Also, the protein powder I was excited about is very constipating, according to her.  She listed the constipating ingredients and they are in there

It’s endless………………

Tuesday, September 4, 2012

Vantage Point

Im trying to appreciate my vantage point in life.  Living in desperate, uncontrolled, intractable chronic pain from inoperable spinal tumors certainly makes for an interesting view of the world.  A small world, but my world.  As much as I piss and moan about how demonic this pain is, how horrific the side effects (nothing for me to do about the constipation anymore except that shot developed especially for people who take narcotics for pain) and all the other things associated with it; isolation, inability to get myself anywhere anymore, etc., I would not trade my life for anyone else’s.  That might sound untrue or just plain astonishing (lying to myself, some say) but it is true.  And it’s true for a reason.  A reason discovered from that vantage point to which I referred.

Unable to drive at this time (while they are trying to tricate me up on one drug and down on the other….but doing so in a way that takes one away without replacing it with more of the other, to see how much I need.  But I’ve emailed, left messages and done everything but use a messenger to say I NEED MORE HELP….and got a somewhat admonishing email back that I had to wait until Wednesday), I thought I’d go crazy from lack of something to read.  But I went online and got “Nook on the Web” which is free to join, but of course, you pay for the books.  I have a gift card I haven’t used so I’m using that, and some of the books are free, though not ones I’m interested in.  Also, my brother and sister in law are letting me use their Kindle account, also online.  That helps alleviate the mind numbing boredom that comes between the waves of agony.

Okay, enough drama.  Insight now.  Today, when Pam first came by this morning I was managing okay.  In pain, not able to leave the house, but not in agony.  Then something strange happened.  She went out to get me a few things, including my prescription for lactulose.  On Friday, the hospital called to say they were putting in a request for Resterol, that shot I referred to (and forgive me for repeating part of this).  When I pulled it out of the bag, I was surprised because I didn’t expect to have it in my hands for some time.  But I have never given myself a shot, and did not want to go back to the pharmacy to have them show me how.  There are instructions, and as it turns out, Pam can show me how so I’ll be fine.

HOWEVER, right after I put all the bowel cleansing products away, I saw how much I had and started to panic.  Slipped right out of “be here now” and into “I’ll be somewhere dark and scary very soon and it may be a nursing home”  Ted called me Sunday from the nursing home, and although I love him to death and am forever grateful for our years of friendship, I’ve always been about three to six months behind him with everything so speaking to him makes my pain worse sometimes.  I wanted to avoid that shot at all costs, and I’m still working on it, but I need to have it because I’m not going to the ER again just for that.   Staying in the moment is a hell of a challenge when you are facing what I am facing.

I try so hard not to complain all the time, but I must complain constantly because I am hearing less and less from people.  I ALWAYS ask about them, what’s happening in their lives, the good and the bad, etc.
 I think people feel their problems pale in comparison to mine, but I don’t want people going there.  Everything is relative and our problems are our problems.

Which brings me to why I would not trade my life for someone else’s.  Simply put, I would not do it because it’s mine.  My life, my painting, my experiences, just as those whose lives are a tad less challenging (we all have some challenges, some more, some less than mine….but I don’t  like comparisons) are theirs.  Having stated that, I still wish it were over.  I want to face this with gusto, but I did that for 15 years or so, not including all the years before that were challenging, but not agony.


Monday, September 3, 2012


Today, the pain strikes were once again through the roof.  And it’s Labor Day, no one to call.  My helper was here and saw what I was going through.  She sat across from me and I saw her eyes were closed and her mouth was moving.  I asked her if she was praying, and she said yes.  I told her to keep going and she did.  Then she had to leave, but she will be back to check in on me, bless her.

I Skyped with my therapist and told her they were taking me down from the meth but not increasing the fentanyl which is insanity.  It’s a pretty low dose of Fentanyl.  I emailed the nurse about it and left a message.  When I spoke with her last week, she said they need to ‘see how I do’ before increasing the Fentanyl.  I can’t explain how demonic the pain is.   I want to die so bad I can taste it.  I wouldn’t kill myself, but it’s tempting.  I know they are tricating me up, but if they don’t increase it soon, I’ll just slap another patch on.  It’s that bad.  My breakthrough med, which use to work, is like taking a tic tac.  And I do suck on it, believe me.

But the problem is the bowels.  I was approved for the shot (Relistore) for severe constipation but I haven’t a clue on how to administer it to myself.  I know it’s in the stomach, I know you grab a wad of skin and just stick it in.  Pam said she has given herself shots for something in the same area so she’ll show me.  I guess it was a blessing in disguise that I got Pam instead of Amanda….still hasn’t a clue what happen to her, but it doesn’t matter.  I just hope she’s okay.   I try and notice when the pain zips past 10 in three seconds, and today I noticed it happened right when Pam came in the the Relistore.  I think it felt like failure.  Failure to move my bowels.  Failure is a theme for me, so it apparently now causes pain.  Gotta watch that.

So, I have these notes all over my house that read “Right now, Right in this moment you are okay.  Stay in the moment” It came to me in a flash and kept bouncing around in my head so I wrote it down, printed it out and taped them in every room of my apartment.  The problem is, when I’m not okay in the moment.

I tend to panic, which makes the pain worse, of course.  I want to learn to embrace the pain….when it wasn’t as severe as it is, I was able to do that.  The saying “What you resists, persists” comes to mind.  So I want to stop resisting the pain.  But it isn’t easy when your entire body is in a vise grip and there is no escaping, nothing you can do.

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