Acceptance

I hardly know what to write anymore.   I feel like I keep going over the same territory; the terrain of my pain and it’s gritty, clinging, pulsating insistence on being with me like an appendage that has no purpose other than to cause frequent trips to the abyss that once was my heart.   I’m lying here right now, counting down the hours until a friend gets here for a movie.   I feel like all I do is complain.  I feel angry that people are unable to “get it” but the anger is caused by the knowledge that there is no way for them to get it.  No way at all.  Like I don’t know what it means to raise a family, have a career, support myself, and contribute.  I can’t know that because it isn’t my life, just as pain isn’t theirs.  That they have stuck by me is beyond amazing to me.  For that, I am grateful.

But whatever test this is (and what life isn’t a test?) I really, really want it to be over.  It’s not like I have any control over changing the progression of my disorder or the direction that progression is going.  The only control I have is acceptance.  But the child in me is screaming at the top of her lungs for someone to save me, to understand, to make it all go away or to help me go away.  Forever.  If I don’t get to that place of peace and acceptance, is that another in the long list of my failures?  It’s a question, not a pathetic “poor me” question.  Because I HAVE had a long list of failures; connected to NF?  Partially. 

But my anger is boiling over right now.  Anger at not being able to stop being angry.  I was able to stop for a while but that was before I went into the hospital a year ago to get off the methadone which wasn’t working and I was really, really contemplating taking my life.  But the part of me that doesn’t want to take my life took over and I called for help from my pain doc, took an ambulance to the ER and stayed in the hospital for five days to try something else.  I’ve written about that experience, no need for a re-run.   I think the new plan has stopped working as well.  It all stops working, eventually.   So we are back to the one thing I can control: Acceptance.

How does one do that?  I can make a declaration to myself when I listen to my drumming or BioLateral CD’s.  I’m thinking I’d have to make that declaration over and over again, many times each day whether the pain is excruciating or manageable.  When it’s manageable, I know it’s lurking around, waiting for a weak moment to leap in and take control once more.  Even though I spend the manageable moments thanking G-d for them, I know excruciating wants to express itself.  It wants to laugh at me, to torment me and to make fun of me.  “She’s thinking she has the upper hand, isn’t that hysterical?” I hear it say.

And the truth is, I DO have the upper hand.  I can choose to be long suffering or I can choose to accept this.  Everyone who loves me knows I’m in pain and yet I have this sick need to bitch and moan because otherwise….otherwise everyone will think it’s not true, that I’ve been faking it or it’s not as bad as all that and I should be working (even though I know I rarely get out of the house and when I do, it’s only for an hour at best).  It’s crazy making thinking.  And in the end, who cares what people think?

Man, I need to work on this.

Many rivers to cross
But I can't seem to find my way over
Wandering I am lost as I travel along
The white cliffs of Dover
Many rivers to cross and it's only my will
That keeps me alive
I've been licked, washed up for years and,
I merely survive because of my pride.

And this loneliness won't leave me alone
It's such a drag to be on your own
My woman left and she didn't say why
Well I guess, I gotta try.
Many rivers to cross but where to begin,
I'm playing for time
There'll be times when I find myself thinking
Of committing some dreadful crime.

I've got many rivers to cross
But I can't seem to find my way over
Wandering I am lost as I travel along
The white cliffs of Dover
Many rivers to cross and it's only my will
That keeps me alive
I've been licked, washed up for years and,
I merely survive because of my pride.

Eventually

I wrote something yesterday but decided not to post it.  I was having a horrible time pain wise; nothing helped, none of my meds, none of my “tricks”, not the meditating, drumming, BioLateral music….nuttin, honey.  So I’m trying to remember that I have good days too and in fact write about them to remind myself when days like yesterday hit, and they hit with alarming regularity, that I just have to hold on and pray the good day will pop up again…eventually. 

But the one I decided not to post could have rivaled Victor Hugo’s “Les Miserable”. Not as well written of course, and without the music which I’m pretty certain wasn’t in his original manuscript.  I never understood who would think, “Hey, let’s make a musical about misery” I would have loved to hear the original pitch for that.  But I digress. 

So it’s another day in painsville; not sure if I should go out or not.  Pam is here, and I’m grateful for that.  I just don’t know if I should go with her to the store.  On one hand, I need to get out.  On the other, I don’t want to encourage the pain to come back to the level it was yesterday.  And I got an email from one of my nieces yesterday.  All three are coming by tomorrow with my dad.  Four people is a lot for my small place, especially because  I need the couch to myself. But it will be fine.  And I love spending time with them, of course.

Okay, so I went to the store, made it back alive though in more pain but it will settle.  I skipped the library but sent Pam to drop off one book and pick up another.  I put them on hold from home (what a convenience that is!), don’t hear for months sometimes and then bam!  Literally, every other day I get an email telling me a book is ready for pick up.  And they only hold them seven days.  And my reading has slowed a lot.  I’m even getting print when it’s available.  Not all books are.

The tumors in my legs have been hurting like crazy.  I watch them pulse sometimes and am convinced I’m witnessing growth.  I want to have an MRI but don’t have the energy to do what I need to do….I would probably have to see the neurologist first but maybe not.  Nowadays, however, I need to be sedated for it because the pain of lying there on that hard surface without being able to move is torture.  So I figure all that is stalking me is eventually going to get me anyway, who cares if they are growing or if they have become malignant?   Those are the kind of moods I can live without.  My mind making things up as if reality isn’t challenging enough!   Will I ever learn?  Probably not.

A Good Day

Today is one of those days where I’m giving thanks almost non-stop for a “5” on the 1-10 pain scale!!!!  I saw my acupuncturist, who also uses essential oils and does energy work.  I always feel better when we are done.  I’ve had this weird neck thing on my left side; very tight.  Not the same as my normal pain…this isn’t even really pain, except when I move a certain way.  But she rubbed it down with oils and it feels better now.  And it feels like my hip hurts but I now think it’s just radiating down from my neck.

And, I feel well enough to make one of my favorite dishes; one I haven’t made in almost a year.  Partially because I’m not up to it because for me, it’s labor intensive.  It’s also normally very expensive.  Halibut is $25/lb. everywhere right now, and even though I only get ½ pound, I can’t justify spending that much.  But I happened in to QFC today, somewhere I don’t normally shop (but I was running early for my appointment so I stopped).  They had it on sale for $16/lb.….still outrageous, but getting ½ kept the price down and I get two meals out of it.  Ready?  Recipe time!

I sear the halibut for two or three minutes in a little olive oil, add chopped baby bok choy and spread my special made up sauce: a spoonful (be creative) of roasted red pepper (Thai) mixed with fish sauce and a tiny bit of sugar to balance the taste.  Then I add a little water; not much, just to make it kind of saucy thick.  After basting it in that, I turn down the heat, cover it and let it cook for about six minutes; no more.  Halibut is a wonderful tasty fish but you have to be careful not to overcook it.  Anyway, I do it all in steps because standing chopping, mixing, cooking all at once is way too much for me.  But doing it in increments works out fine.  I make some quinoa (tri color) on the side…Yummy!!!!

My dad isn’t doing very well right now and I’m very worried about him.  I want to go see him but of course, cannot.  I think he’s lonesome for all his buddies and not being able to see me that much.  We talk all the time, but we did that when he was in Minnesota.  I love him so much my heart breaks thinking about how close we are in miles but physically unable to manage those miles.

And I had a reminder yesterday about how important it is not to fly off your rocker over the little things.  I was going to get my mail and my car wouldn’t start.  Dead as the proverbial door knob.  And of course, not one other car in my lot so no one to ask for help.  I called the neighborhood car place, only nobody tows anymore.  You have to call for that separately.  They must have some kind of deal going on because he told me that’s the way it’s done now.  So I called them, and arranged for them to come by in the morning (today).  I didn’t get upset for a minute, even when they told me the cost.  Just bit the bullet.  Then my neighbor came home, I told him my problem and said I had jumper cables could you help me?  He did, it started and I cancelled the towing and the car fix place.  It felt great not to go into my usual over-the-top the sky is falling state of mind.

A Conundrum

A gripping fear of how much worse this will get sometimes takes hold and won’t let go.   And then I think of Stephen Hawkings, whose disbelief in G-d just might be what has allowed him to go as far as he has gone in life, in spite of having ALS for fifty years.  Amazing in itself given the normal life expectancy of someone diagnosed with that disorder, which is 5 to 10.   People who believe get mixed results, same as those who don’t.  But then, those that don’t believe don’t ask G-d for anything.  The only thing that gets some through life is “G-d’s Will” thoughts.  If you don’t get what you think you want, it’s “G-d’s Will” If you do, you praise Him.

Stephen Hawkings contribution to physics, astrophysics and the Universe is immeasurable.  And his findings neither prove nor disprove the existence of a higher being creating the Universe and all that resides within.

Makes you wonder.

I mean, I can’t even count the number of arguments I have had with the Big Guy (I vacillate, but pretty much am a believer), the number of unanswered prayers, the number of answered prayers and the battles we’ve had around my pain.  The “why, why, why” war cry that has no satisfying answers but for some unknown reason, I am compelled to ask anyway.  I try focusing in on what I can control, on staying in the moment, on giving thanks for the roof over my head, the food in my belly and my access to medications, even if they don’t work half the time.

Still, since we euthanize an animal so it won’t suffer I struggle with why the same opportunity isn’t afforded me and people like me.  I know that sometimes my emotions are moment to moment; an awful panic attack in the morning, searing pain in the afternoon and a settling down of all my challenges after dinner.  If I ended it while in a bad mood I think it would be bad because those moments pass and if you chose such an action during a bad moment you might find yourself asking “Oops, what happened?  What did I do?”   I wrote that somewhere else once.

So I think it would be best if you end it, to do it when you are feeling good.  A conundrum for sure.  But it seems to me there is a way to find inner peace and still be ready to move on….I hope I can get to that place because when the pain is intolerable, I don’t want to be making that mistake.  Can I exit when the pain is intolerable?   Can I get to a place of peace while in pain?   Can I let go of everything, worry about nothing, and make my peace with my life?  Would exiting mean I’m not at peace?   I mean, does being at peace mean you can tolerate anything so bring it on?

I’ve got to stop thinking.  Now.

Ah, Life

I say I want to die, to be done with it, to be released off this planet but truth be told, I’m as scared as I am in pain…and that’s a fair amount.  I want to believe I’m not afraid, that anything is better than this, but I don’t know that for sure, of course.  And if there is anything I can take away from this visit it is uncertainty.  Plus I need to stop reading my online papers.  And if I ever get my eye glasses back (a very long story and I have to go back again in six weeks so I still have a very old prescription in my old glasses) I can read again.  I can’t even think I’m in so much pain.  Nothing is distracting me.  These are the moments of life-ending temptation but if I die in this much psychic pain I’m afraid I won’t move on….and being stuck here is terrifying to me too.  So that’s not an option.  The only other option is to suck it up and accept it.

And I can’t gain an ounce to save my soul.  Maybe gaining an ounce will save my soul, who knows.  But I have no appetite and force myself to eat something every day.   My mom was like this; thin as a rail and we couldn’t get her to eat.  She would cry and say nothing tasted good, and she couldn’t tolerate much of anything food wise.  Certainly not anything that would put on the pounds.  I’m just like her that way, though she didn’t have NF.  That’s my bonus disorder.

At any rate, I am in the abyss big time and I don’t know why.  I know I’m tired of fighting for a life I don’t want.  I know I’m sick and tired of being sick and tired.   I know I’m thinking about Oliver and when he passes….that will be the end of pets for me.  No more energy.  Except for Oliver.  I’d push myself off a cliff to get him what he needs.  Okay, enough.  I will be praying, drumming and meditating away the day.

On the funny “strange” side of life, I got a very nice email from a woman about this blog.  She has NF too.  I wrote back, but didn’t hear again for a few weeks.  Then I got an email the other day from her and she wrote that she was sorry she hadn’t gotten back, her mom just had surgery and she’s flying out to see her…in Seattle.  Not only in Seattle, but LITERALLY walking distance (for someone other than me) from me.  Outrageous.  I wrote back and told her she could throw a rock and hit my apartment.  I mean, all she had to do is go right out of her mom’s driveway and drive ½ a mile and there I am!!!  So we agreed to meet.

She came over, we talked, laughed, compared notes….she got NF from her dad’s side; I’m a spontaneous gene change (they think).   She has three kids and one has NF, the others do not. I have no children; tubal at 25.  She says she is in some pain and the tumors are spreading.  She looks great; healthy and no visible tumors that I can see, though she can.  She kind of looks like I did 20 years ago; and she’s 20 years younger.  But that means nothing.  We laughed about the differences in NF people.  As I always say, if there are 20 of us in a room, you’d think we had 20 different disorders.   The bottom line is this: you can’t look at someone like me and think that’s how you will end up.  There is always someone worse off, someone better off.  Ah, life

Self Healing

I’ve been reading things on self-healing and came across this:  http://www.cellularwisdom.com/keys-to-selfhealing.shtml   it’s interesting and I actually do some of it anyway.  But like so many other people, he fails to mention genetic disorders as opposed to diseases.   When pop healers start talking, I listen closely to what they are saying and very few mention disorders.  In fact, I don’t think I’ve read one.  It’s all about disease.  So why not address it?  What they proclaim, and the way they suggest we “heal” could work for both.  Or can it?  Is that why they don’t mention it?  I mean, they discuss the cellular level and how our bodies respond to what we tell it.  And that part is true, at least for me.

We make ourselves sick all the time.  Why not make ourselves well?  I used to think our cells were replaced every few years.  I used to think they were copied.  If that’s the case, how can you heal if the mistakes in the cells are just copied over?  So I looked it up.  There are many places you can look, but here’s one: 

http://askanaturalist.com/do-we-replace-our-cells-7-or-10-years/

All I know is I pray, I meditate, I listen to BioLateral music (moves from left to right….best to listen with headphones….based on the eye movement therapy that has been around for years) and so far….well, you know.

Pain beyond measure.  Lonely, but when people come over, it’s all I can do to not act as miserable as I feel.  Most of the time.  I felt pretty good Friday but I didn’t sleep well Thursday night …one of my pills fell on the floor and didn’t get in me….figures.  I could have had a great day.  I changed the patch today and hoping today and tomorrow are better.  I am going to start practicing courting wellness instead of death.  That might be a good start, you think?  It’s just so hard to do when one is in agony. 

My nephew is coming over later.  That will be nice.  A friend came over last night.  She’s a dear, dear friend who drives 45 minutes to see me twice a month at least.  She has got to feel frustrated with me.  I’m not much company, I can’t go anywhere and basically, we eat something and watch a movie and she leaves.  I hope she finds something fun to do afterward….it’s early for normal people.  When I apologize for being so unfun, she asks me why I’m apologizing.  She’s a treasure and I thank G-d for her.  She has had her challenges but she seldom speaks of them.

I feel like such a loser.

Coming Back

The pain and numbness have been relentless.  I just saw my acupuncturist.  I sometimes want to cancel because the drive over feels overwhelming.  But in the end, it always helps so I push myself. I have no clue how my 89 year old dad does it with his pain issues due to spinal stenosis.  Again, I marvel at how some undetected health problem or an accident can take life away in an instant but I keep on going.  And my questions never get answered.  People tell me not to ask anything when I’m in agony or depressed because you don’t get answers anyway and it just makes the pain worse.  Great advice, but who wants to know those answers when things are rosy?  Of course, rosy for me is a “5” on the pain scale.

And I ignore other health issues because what’s the point?  My hips hurt, my remaining breast hurts (had a mammogram about six months ago), I seem to be losing more weight….no appetite whatsoever but I do eat; not much, but I eat.  I’m sure the laxatives have everything to do with those issues, but I can’t not take them or I’d be in the hospital once a week and that treatment isn’t pretty.  If it weren’t so pathetic it would be laughable.  Sometimes, in the right mood, it is laughable.

I know too, that very few people residing on this planet have it “easy”.  Everyone has issues.  Even the no problem problem is an issue.  I don’t want it easy.  You learn nothing from easy.  I just want it tolerable.  Apparently, that’s too much to ask for too.  Wanting what we want when we want it is such an American/European thing.  All the things we feel we can’t live without; it all gets us in the end.  We don’t get it, it gets us   My question has always been about feeling that wanting good health isn’t the same thing as wanting a car.  But maybe it is. 

Okay, honestly?  There is one thing I want.  I want a virtual reality device, if they exist, because there are places I will never go that I would love to visit….not just the pictures, the feeling of actually being there.  I am not jealous of everyone in my life who have had those experiences…I just want to go to places like the Gallipolis Islands, Paris at night, Italy during the day.  I want to see the Pyramids.  So I guess there are things I want.  I want food delivered to my home but can’t seem to find someone willing to do it, besides the weight loss places.  Boy, someone is missing out on a great business opportunity.  Shut ins who need nourishing food.  I’m aware of Meals on Wheels but I have very specific needs….just a meal a day is all I need.  I can make the rest.  That’s my bucket list.

And in other news,    Pam called Wednesday.   She wants to return to work next Wednesday!!!  Fine with me, but I want to make sure she’s okay.  She was in the hospital for 10 days and has only been home for about four.   But she said they told her at her post op appointment she could return to work in 10 days.  Weird, because they said three to four weeks initially.  Now I must tell Marti.  The thing is, I don’t want to tell her anything until I’m sure.  Pam wanted me to tell you all 

Heartbeats

I saw my dad and my sister Sunday morning, my brother and his wife Sunday evening.  It was lovely.  Now I am in agony.  My legs, my feet feel like they are buried under concrete.  I know it’s hard to grasp, but my feet are both numb and killing me.  Nerve pain is the worst.  It’s felt everywhere and it’s getting worse all the time.  I just want to take my bat and balls and go HOME.  Oh well.

I haven’t heard from Pam since last Tuesday and I’m worried.  I left one message on Friday but I don’t want to keep calling.  I knew this was going to be a lot tougher than she imagined it would be, but I sure hope this is just normal recovery stuff and not anything else.  I will assume I would have heard from someone otherwise, but that’s not always true.  If I hadn’t called Ted’s cell phone the day I did, there would have been no one to tell me because no one thought of calling.  Scary.

Which brings up my eternal question:  Why NOT me?  People get awful diseases and die from accidents, etc., all the time.  I go on and on and on like the Energizer Bunny (is that still around?) when all I want is for it to be over.  Boy, I’m in a mood.  Just a mood, it will pass.

Marti, the person standing in for Pam isn’t nearly as motivated as Pam, doesn’t clean as well and has to be told every step of the way what to do.  I get that it takes a while to adjust, but she’s been with me at least six times now; I don’t need that much, but what I do need has to be done.  And I have to tell her each time the same things over and over, getting up to show her.  It isn’t that helpful so far.  I may call for someone else if it’s not better this week.  Still, I get that I’m lucky to have the help.  Just not when I’m in agony and haven’t the energy to go over everything again and again.

I am listening to my BioLateral music from David Grand while I write this.  http://www.biolateral.com/page/bio.htm  it’s interesting; my therapist gave me a CD and the music (and sounds) move from left to right…it’s a variation on this eye movement therapy that is supposed to help with trauma.  It really does calm me down, whether I listen while writing or reading, or just listening with my eyes closed.   Anyway, it’s worth checking out for anyone suffering from a trauma related issue like PTS or chronic uncontrollable pain….he’s worked with people who have come back from the war with those issues and has had success.

I wake up so stressed each morning and then run around doing stuff I just need to get done; taking care of Oliver being the most important.  I dread the day he is no longer with me, assuming he moves on before me.  I don’t think I will be able to get another cat when that happens.  And I can’t bear the thought of living without knowing there’s another heartbeat in the house.

Exchange

Yesterday I had a miserable day pain wise and when that happens, I sometimes go into overdrive thinking about things.  I know it’s useless to ask “why” all the time even if it isn’t a “poor me” question but rather, a spiritual one.  As in “what am I supposed to be learning from this?”  Either way, answers don’t come so why keep asking?  It’s like self-flagellation of some kind.

So I was telling my therapist about how I sometimes fantasize about getting healed.  How I sometimes imagine I could heal myself if I just concentrated hard enough, tried hard enough, meant it enough.  I don’t think that I am not good enough if it doesn’t happen because I don’t really expect it to; it’s just a fantasy. 

But I did start to think about what it would mean if I were to succeed in ridding myself of my NF.  And I must admit, as much as I don’t want to live like this anymore, being healed is also a scary thought.  Because if I wasn’t in this kind of retched pain, if I didn’t have tumors growing everywhere, if I didn’t have the digestive issues, if I wasn’t on all these freaking drugs…what would I be doing with my life?  I’d have to give up the little I get from disability, I wouldn’t need the help I get, and like everyone else who is healthy, I would have to face the world in a different kind of way…a way that is just as scary as what I face now; just different.

So while I get upset on days that the pain is through the roof, or when I can’t get out to see people or even do my own shopping and other errands, I remind myself that everyone has challenges.   We tend to compare our challenges to other people’s and it’s not really fair, even if you consider yourself the lucky one.  It’s not fair (to compare) because we don’t know why we were put here, let alone why someone else was put here.  Granted, there are a lot of people roaming the planet who think they know all the answers.  And that may be their journey; discovering that they don’t know all the answers after all.

That Chinese proverb which is really a curse (I mentioned it before) “May you have an interesting life” is good to keep in mind.  And right now, there are way too many distractions (“interesting”), the majority of which are negative and scary.  Fear keeps us from moving forward just as much as too much of a good thing does.  And right now I am very afraid for the planet and everything on it, including us.

And back to the mundane:  I just got back from the eye doctor.  The fifth appointment due to screw ups.  Now he says I have “severe” dry eye and need prescription strength drop for it.  I have to use it four times a day and go back to see him AGAIN.   He told me once he had a patient who came back 37 times in one year. Not sure how that made me feel.  Oh well.  The fun just never stops!!

Letting It In

Pam called a few hours after her surgery and sounded well, but she was still pretty sedated.  I suspect the weekend was a bit challenging and I’m hoping she is doing okay.  I left a message at her house so maybe her son will call and fill me in.  Her replacement is a bit daunting.  Showing her the ropes and where everything is has its moments; she isn’t very motivated and I think she has some social dysfunction.  I’m not being mean, just an observation based on some things she has done and some things she has not done.  Oh well.  It was hard with Pam in the beginning.  I just keep my eye on the end of August and hope that she’ll be back by then.

I spend time on Huffington Post and occasionally make comments on the stories I read.  Once in a while, I mention my NF and people are usually very kind in their responses.  Usually.  The other day this guy  wrote back (in the comment section) that I was “sitting around feeling sorry for myself” and that he “had a brain tumor” and was always happy go lucky or something like that.  Don’t know if his brain tumor is real of course.  But as always, I started wondering if what he accused me of was true.  I mean, I have my moments, but I know I don’t sit around feeling sorry for myself.  I get angry at my condition, but do I make a difference to anyone? 

A few hours later II get an email from this woman who stumbled upon my blog who also has NF.  She thanked me for what I write and shared her story with me.  I had to smile, as I wrote her back, because this is about the third time that has happened to me; I’ll be questioning my worth and feeling like a big fat failure in life and bam!  I get an email like the one this woman wrote.

It’s funny how we open wide the door to negativity but slam it shut and cover out ears to the positive thoughts/comments that come our way.   I don’t know where that comes from…perhaps being taught at an early age that thinking well of ourselves is not acceptable behavior.  I think that’s changed a great deal, at least I hope it has.  Teaching our children that it’s okay to feel good about ourselves is healthy, not a sign of being self-centered or self-serving.   That happens, sure, but teaching balance is a good thing and will make us better people, not people who shrink at the first sign of someone trying to bully us or knock us down to feel better about themselves.  Of course, there are bullies who do massive damage to our souls no matter what we are taught.  This guy sounded like one of them.  And I let him in.  

Personally, I need to learn to laugh it off.  I used to be able to do that if someone said something outrageously erroneous about me.  Now, not so much.  I think my NF and the pain that zaps me of all energy; all ability to stand up for myself is part of it.   I just wimp out.  Not always.  When the pain is manageable, my old steel comes out and I just fight back; but when I’m in pain?  Fogedabodit.

My dad is someone who fights all the time; he’s in a boatload of pain too with his spinal stenosis.  But he gives me strength to keep fighting.  And he’s 89!