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Thursday, March 29, 2012

Broken Agreements

I feel totally untethered these days.  Walking around that abyss again.  Trying not to think about the emptiness, much of which I have created (is it possible to create emptiness?  I guess so).   I remember 25 years ago when I did the est training (called something else now and was very useful to me at the time) they said that our lives are empty and meaningless and it is up to us to fill it up.  I guess that makes sense!  It sounds so despairing when one says “empty and meaningless” but it really isn’t.
I remember something else to, something that kind of startled me but after a while, I “got” that too.  First a little background.  The est training took place over two weekends with one evening session in between.  They had all these bizarre rules (the world has changed much since then, and I hear they aren’t nearly as truculent) including taking our watches or any timepieces, not letting us go to the restroom except on breaks (or with a note from your doc if you had a medical issue) and some other ones I don’t recall.  Looking back, I have to laugh a bit, but my whole family did it eventually and I think we all got something out of it.  There was tons and tons of information to process and a lot of stuff about making and keeping agreements.  And lots of other sessions after, if you wanted.  Like “Relationships”, etc.
Anyway,  I met this woman the first weekend who was really fun and interesting to talk with.  A few of us had lunch together, her included, and I spoke with her on the evening session too.  On the second weekend (there were almost 200 of us) one of the “supporters” passed a note to the facilitator (I volunteered doing support work for over a year after that event).  He stopped what he was talking about and announced that this woman (whose name was also Sherri, which is why I remember this so clearly) was killed in a car accident on the way to the event, so she would not be keeping her agreement.  I gasped, as did everyone else.  Firstly, at her death, secondly, at the ‘broken agreement’ comment.
No one said a word for a while and the facilitator moved on.  Mortified, I finally raised my hand.  When he acknowledge me I expressed my displeasure and anger at what he had said about her.  How could this be a ‘broken agreement?” I sputtered.  Everyone seemed relieved that someone finally spoke up….lots of mumbling about it.  The facilitator took a few moments to explain why he said it, and that he knew it sounded harsh.  But the bottom line was that she would not be coming back, hence the agreement was broken.  Not by choice.  Not on purpose.  Not to be interpreted as something negative, which is where the mind goes when someone says what he said.  But a broken agreement.  Period.
And something amazing started to happen in my brain.  I got it.  I really did.  We put so much negativity (or the opposite) in people’s words, never thinking about the simplicity of words or just the literal meaning.  No interpretation, just the facts.  She was not coming back.  The agreement was broken.  But broken agreements are not necessarily negative things so long as you have an explanation that is acceptable and if you can, do the breaking in advance.  Or if, like in this case, you are dead.
So accept the simple explanations and try not to interpret or judge, if possible.  Life would be so much easier, wouldn’t it?  Emails are the worst with regard to interpretation issues.  You don’t see the person’s face, you don’t hear their voice, you just read their words.  And words, as we know, can be very difficult to understand in any language.

Tuesday, March 27, 2012

Mind's Eye

My mind’s eye is far more forgiving than my mirror.  When I stand under the shower and let the hot, hot water sluice from my head to my toes, my eyes are closed and I’m seeing myself as I was 20 years ago.  I don’t do it consciously, but rather, it comes to me in pictures and I am always jolted when the steam clears and my bathroom mirror reflects back my mother in my aging body.  I can almost hear it mocking me. 
There is this great line in the movie “Love is a Many-Splendored Thing” (A great, great old movie with Jennifer Jones and William Holden).  She plays a doctor and she’s been seeing a married man and is fired from her job at the hospital.  Another doctor there, a Communist (it takes place in the mid forties) is trying to convince her to go back to China (they are in Hong Kong).  She looks in a mirror and says “That’s how we differ; you look in the mirror and see truth, but it is an illusion.   For in the mirror, what’s right is left and what’s left is right”   I may be paraphrasing a bit.
So maybe the mirror is the illusion, and my mind’s eye, always the wiser one, sees truth.  Still, I would like the mirror, truth or not, to be a bit more forgiving too. 
On another note, I went for my annual mammogram today.  That was a horror and a half.  I’ve mentioned that I have cut back on my pain meds.  And I also cut back on the Neurontin (doc wanted to know if it helped my balance) which helps with neuropathy (and that’s doubled in pain recently).  After that didn’t make any difference (for two weeks) I cut back by one more (all of this with docs knowledge and direction).  Oh oh.  I guess it was because I wasn’t doing a whole lot that I didn’t notice.  But driving for 30 minutes to the appointment about killed me.  And there was no where to lay down.  This is a CANCER CARE TREATMENT CENTER (not the one with the same title…just a treatment center for cancer patients). .  What a joke.  No where for cancer patients to lay down.  I explained my situation but it did not produce an exam table that flattens.  Finally, they found one and five minute later they were ready for me but said I was welcome to wait an hour for the pain to subside.  I declined.  I wanted to go home.
I asked them to take my blood pressure and they told me it was high and I should immediately go to either the ER or my doc.  My doc is between where I was and home, so I just showed up, screaming in pain.  It took them forever to “get it” too.  My family doc rolled her eyes when I told her what they said and what the BP was.  She said it was normal.  She did check my heart rate, etc.,. but told me to take my regular treatment for pain and something to relax me.  She wanted me to call someone to get me, but I laughed and said I was use to this (I’m really not; I’ve never driven after taking the one I take at bedtime).  She insisted I call her when I got home.  Hmmmm.  I told her I wanted to go HOME and pointed upwards.  She kind of looked at me like “what are you saying?” so I quickly added “I would never actually do anything, doc, I’m too chicken”
I think what is second in line to dealing physically with this disorder is that when you hit a wall like that, you have to explain, starting with the big bang, what is going on and you don’t have the breath for that.  Then they think  you are mad at them and get defensive.  So I always preface it with “I’m not mad at you, you did nothing wrong” which they either don’t hear, or don’t understand.  “I’ll be back in 2 minutes” may feel like instant to them, but for us, 2 minutes is like 2 hours…they just don’t understand the impatience….the level of pain that sets my teeth on grind and drills me to the wall, screaming in agony.  And of course, if you want immediate relief (who wouldn't?) in the form of a shot, forget it.  Not gonna happen.  They claim they have none; which is bull, but what are you going to do?  They KNOW me, and they still refuse to help.  Sigh.
Abu Ghraib has nothing on NF.  Nothing.  While it’s true I’ve never experienced it, I’ve experienced this for 10 years non stop.  I do believe that qualifies me as an expert on torture.   I don’t remember raising my hand at school when I was six, proclaiming I wanted to be a torture expert when I grew up.  G-d misunderstood.  He thought I said “Fortune Expert  I spoke to fast,, I guess. 

So much for my reduction in pain meds test.  And the neurontin? Can't drop it further than five tabs (600 mg) a day.  It's poison.  It's all poison.  I'm killing myself to keep myself alive  But the neuropathy is what is so debilitating.  And that's what neurontin helps.
I hate mirrors.

Sunday, March 25, 2012

Grown-ups

What do you want to be when you grow up?  A simple question, asked by adults to children almost as soon as they can speak.  I never really had an answer, at least not oneI can remember.  I probably said I wanted to write, because I did.  I do.  Still.  But there is a big difference between writing and submitting what you have written.  I haven’t tried for years, and the rules have changed dramatically, especially in the digital age.  The “business” of submitting something you have written to a newspaper, a publication of some kind, or a publishing house for that novel you’ve been working on for years can take years.  And years.
A few years ago, I wrote a manuscript entitled “The Politics of Chronic Pain Management”  I had done a LOT of homework, talked to doctors, pain patients, and of course, my own jaded experiences with patient care.  Which , in the case of chronic pain, is poor at best.  I had an agent but we never found a publisher.  Father Bush was president (I mean little Bush’s father; I’m not equating him to G-d or being offensive to anyone) and his holy war against people who need prescription pain medication was heating up something fierce and I didn’t mince words about it, nor the Patriot Act.  Don’t get me started.  Please read “Pharmacists and Other Sordid Judges” on this blog somewhere.   Some of the information has changed, but for the worse, not the better.  Sigh.
I have been trying to cut back on my pain meds to see if it helps with my digestive issues.  I have cut back my Neurontin by two pills a day (600 mg each) and my Methadone from 7 to 6 (10 mg each) so we shall see.  The reason I mention this, which probably doesn’t seem to fit, is I have very mixed feelings about what the result will be….if I am able to cut back further, what does that mean in terms my my ability to tolerate this horrific pain?  Could I have done it a long time ago?  Could I have had a life, beyond these walls?  And what the hell have I been avoiding?
I have had too many jobs to count.  Even before the pills, I had a hard time organizing my thoughts, holding down a job, knowing what I wanted to do with my life, being able to do it (not) and everything else that goes with being an adult.  Was it my choice to stay single, or did I just opt out of everything in this life?  I mean, I know the tumors are real, I’ve seen them from my MRI’s enough times.  I know the pain is real, some times it flattens me.  But why?  Why can’t I just overcome this?  What’s wrong with me?  I mean, I read about people overcoming things a lot worse then NF.  A lot worse. 
 A friend of mine shared with me that she knows this young girl (high school) who was born to a crack mother, given up to her grandmother at the age of 3, her dad was in prison and she was ADD….she is in a very challenging school, she struggles with everything except writing, but she is brilliant.  She just got a full four year ride at a well known university.  I saw part of her essay that she wrote.  It brought tears to my eyes.  It was all about wanting to serve….she did not use her background in it at all, that my friend just told me.  She didn’t play the “poor me” card because she doesn’t want or need sympathy.  She just wants to serve.  Especially special needs kids.
How do people do it?  I swear, I haven’t a “can do” bone in my body. I just don’t see that my getting out of bed in the morning and moving forward in spite of the pain is enough.  It isn’t the “get out of jail free” card that I want after I die.  Or before.


Thursday, March 22, 2012

Pain-free Fantasies

I have this fantasy (one I can share), a common enough one, about winning the lottery.  Depending on the amount, of course, I would give a significant amount to each of my family members.  Then I would set up a medical trust for myself, and another, smaller amount would go to living expenses.  I’d give what was left to friends and charities.  The end.
I am sick to death of depending on my family for support (beyond the tiny amount I get for disability).  I want to find somewhere else to live, somewhere less expensive, though moving would be incredibly difficult.  I like where I live; my providers, except for the main one at the University of Washington, are within a ten minute drive from me.  Finding a different therapist, dentist, healer, etc., would not work well for me, and driving any further would not work either.
This is what is so darn hard about chronic illness, especially when that illness involves intractable pain.  Pain that is relentless.  And yet I’m trying to back off all my pain meds because of what they are doing to my body.  But I have horrible pain strikes; I went out for dinner (a seldom experience) with a friend Saturday nigh…driving home, my legs and butt where screaming in pain.  Zinging so bad you could practically hear the buzz.  So I’m not sure backing off is a good idea, but I can’t stand it anymore.  The side effects, I mean.  I am so tired of trying to balance it all, it makes my head spin.
Another fantasy is that someone from a distant planet with remedies unheard of here on Earth will come down and make me all better.  And give me the power to make others better.  You know something?  I’d go with them if they asked.  Or maybe they would just take me.  Of course, people who claim to have been abducted never have anything good to say about Aliens.  Mind you, these are the same people who don’t have anything good to say about most people on this planet so it’s hard to say for sure.
When I meditate, I think about these things.   If I can make my pain take a backseat when I meditate, why can’t I make it go away for good?   I mean, our cells regenerate (or something like that) every 24 hours (or every month, can’t remember) so if that’s the case, why can’t they come back in a different form, without the pain?  They regenerate as carbon copies of themselves, so the tumors are still there and of course, so is the pain.   Not everyone who has NF has pain, of course.  The new neurosurgeon I saw a few weeks ago said that people like me, whose tumors are mostly inside or on their trunk have pain, but those with tumors all over their faces, hands, legs, arms etc., usually do not.
It grieves me that NF is more common than so many other well known disorders and diseases, but you almost never hear about it.  Probably because we live in the shadows because of what we look like, or how horrible we feel because of the pain.  I would love to find a spokesperson for NF who everyone knows.  Let’s all work on that, shall we?

Cut Back

I may have to have my head examined for this, but I’m cutting back on two of my medications.  One is Neurontin, which my pain doc asked me to cut back on to see if it helped my balance (not so far and it’s been a month…but I’m cutting back further) and Methadone which I hate so much I can’t stand it.  I’m doing it primarily because I’m worried about liver damage.  My constipation has got to be due to my liver.  Even though the standard tests done by western medicine shows no problem (at least it didn’t  the last time I had it done, about eight months ago) I don’t trust it.   My healer has me on some supplements (that you can only get through a practitioner) to help with my liver, but I also need to take Miralax too.  I simply hate all these meds.  Right now, I’m in agony, but I don’t want to assume it’s because I’ve cut back; I have good and bad days anyway.  So we’ll see.  If it doesn’t calm down in the next couple of days, I may be forced to go back to the original dose though I hate to do that.  I’m skirting around a panic attack at the moment    My legs are falling asleep even when I lay flat.  I don’t want to do this anymore.
And I can’t even think straight so writing has been a challenge.  I’ll try later.

Sunday, March 18, 2012

Rabble Babble

Like most people my age, there are deep creases and abundant lines that score my face, my body, my soul.  Unlike most people, along side the lines and creases are tumors.  Some the size of white golf balls and yellow tennis balls, some the size of green peas.  Although there is nothing colorful about them, the bruises that rise like tulips in the spring (with no memory of how I injured myself) are deep purple, red and black, if I happen to catch sight of them early on and before turning to the color of those tennis balls, those peas.   I once found one behind my left thigh that was so deep in color, so large (taking up the whole of my thigh) it looked like a pressure wound.  Sigh.
I am trying to imagine what life would be like without NF.   What would I have done if not limited by pain?  And how is it that my 88 year old father who has spinal stenosis and deals with horrific pain as well, gets around daily?  He hates Sundays because he has nothing to do.  I worry about the medication he takes, but am amazed at how he makes me feel like a big baby.  I know comparing does not good, but it’s hard not to when I hear about all the things he does everyday.
Did I just opt out?  It sure doesn’t feel that way.  Last night a friend picked me up and we went out for a bite…the first time I’ve been out in a couple weeks (other than grocery shopping).  I was in such agony by the time we headed home I could not wait to lay back down.  If my dad feels what I was feeling, it’s beyond my understanding how he does it.  My friend was really worried about me.  I try not to let people witness those moments, but it was out of my control.  Just like everything else, just like everyone else.  As the saying goes, we make plans, G-d laughs.  What a sense of humor.
My hands are tingling now.  And I need ANOTHER thousand dollars worth of dental work….a new crown.  And I still need the third one I never took care of because the emergency root canal.  Why do I keep doing it?  Well I’d have no teeth in my mouth if I pulled them every time this happened.  I am baffled by people who take these horrible drugs for ‘recreation’.  They have destroyed my digestive system, my teeth, my balance….I sometimes watch skating, or that great new show, “Smash” (watch it if you haven’t) and I am so jealous of people who can move their bodies like that.  Who have healthy bodies, and who take care of them.
Sometimes I fantasize about being a walk-in.  One soul who takes over the body of another (by mutual agreement and for the advancement of both souls).  Just to savor, for a short time, what it feels like to be in the world and not just of it.  But it only takes a few seconds to realize that once again, as bad as it is, I have it good compared to the rest of the world.  And that’s part of the problem, isn’t it?  To live around abundance, to be in a place (the US) where anything is possible and being helpless to do a damn thing about it.   And yet, so much of the population in the US is in the same predicament as I am, for different reasons: Staring at abundance through the plate-glass window of life, and being keyless.  Only one thing to do: Count my blessings.

Saturday, March 17, 2012

Calling All Angels

First, the mundane.  There are only two places that I know of that carry the lactose-free yogurt I eat; one is the PCC about three meandering miles from me (the PCC’s of this century are a far cry from the ones I patronized 25 years ago when we were called “granola crunchers” and got our peanut butter out of huge vats) and Whole Foods (a new one just opened about two direct miles from me).   Both places require you to either take out a second mortgage for fresh fruit and vegetables or turn over your first born for all other foods and sundries.  I rent and have no children so I’m kind of stuck.  I drool when looking at the sushi, bakery goods (yum) and fresh fish ….but the yogurt and a certain cookie that I love can only be had there.  I don’t think I’ll be seeing either place very often.  Good ol’ Fred Meyer is my cup of tea; and they have a very good natural foods section and lots of fresh fruit/veggies which is mostly what I eat.
Now the hard stuff: After Thursday’s challenging day with ye ol’ therapist, I’m feeling exhausted.  I don’t know if I want to feel more (as I declared I wanted just yesterday) or in an effort to never feel anything again, fold up in the fetus position for whatever is left of my life, listening to the saddest music I can find.  The music would probably make me feel something, though.  Tough choices.
 My friend Ted, the one who also has NF and is worse off than me and too far away to go visit (which he wouldn’t want anyway) told me yesterday he HATES when you set the clocks ahead because there is more daylight.  He kind of laughed and said he knew it sounded weird.   I didn’t think it sounded weird at all..  I get it completely.  More daylight, more sunshine (well, limited here in the Pacific Northwest) more reminders of how limiting our lives are.  How isolating.  How lonely.  How maddening and how difficult not to feel this way, write this way, be this way.  I try letting the sunshine in, though, because when I’m not feeling sad about not being able to enjoy it, it does lift my spirits a little.  Being warmer would be better and it is getting there, bit by bit.
It’s frightening for me to “let it in” most of the time.  Not having someone beside me to support me through it is beyond difficult, but I made my choices in life and now I have to live with them.  Like everyone else whose made choices that they must live with.  That’s what’s so incredible about living with chronic pain (or any chronic illness, I guess); We think  life feels so different than most people, yet it’s exactly the same in most ways (the ‘gnats’ in life; a bill that’s wrong, computers that crash, etc.  And of course, other people have more gripping challenges such as the disappearance or death of a loved one, etc.
When I was younger, I had a couple of opportunities to settle with someone but they all fell apart for one reason or another.  One man left because I told him I couldn’t have children.   I had a tubal ligation at 25 when I learned the chance of passing this dreadful disorder along to my children is 50%, and, it would probably be worse for them.  Don’t know if the thinking on that has changed, so don’t go by me; look it up.  I, like so many with NF, am a “spontaneous gene change” and the choices I made were based on the information I had at the time I had it.   Most “Truths” change, but many (like the healing power of kindness) stay the same.  And there were others too.  Most people have had a list they take with them to their graves.  Mine is short, but it’s a list all the same.
So, on a go; my angels beside me, trying to ferret out another day in paradise!

Thursday, March 15, 2012

This One's for the Soul

Well, I just finished one of the most grueling hours with my therapist.  I wanted to do some really deep work today around my health issues, especially the GI problems and my “holding on” for dear life.  Because that’s pretty much what I do every day.  Hang on by the tips of my fingernails, swaying to the music of my limited life.  And I wonder why I’m constipated.  Constipated living will do that.  Well, opiates too, but that’s why I need to be mindful with everything else I do and say.
I have written about my “helpers” from the other side, but there is one that is on this side that I seldom speak of.  She is “little Sherri”  she lives inside of me.   I think everyone has an “inner child” (who I use to call “my inner brat” before I learned how wise she was) who knows more than we do.  She (or he) remembers everything, holds back nothing and helps with anything we ask of her/him.  I was in tears the whole time.  I often forget to hold her close to me and ask her about the past and the present.  She is indeed wise
When I’m not railing on about lovingkindness, forgiveness, gratefulness etc., I am wailing about “poor me” and how little I have and what a waste my life has been.  The abyss seems to call me much of the time, showing me (read The Choice…in here somewhere) the darkness.  Little Sherri shows me the light.  It is her on that mountaintop ledge that gently points the way to the beauty of life. 
It’s funny because my sister just got a job for the first time since her kids were born 18 and 17 years ago.  She was lucky in that way, but now wants to return to work.  She and her husband have had many good things in their lives; many trips, private education for their kids…that kind of thing.  She’s had her share of tough challenges too.  I have never cared a hoot about the “things”  and have always happy for them, though I have to admit, there were times I wanted that choice.  But I was actually jealous that she is going back to work.  Not being able to contribute in some way is what eats me up.  I do my best with this blog and talking to the few people I’ve talked to who have NF, but it doesn’t feel like much.  I have to let in that the small stuff counts too, but it’s hard.
When I close my eyes and conjure up my helpers from the other side, mostly women I have known in life (mother, grandmothers, aunts) I “hear” their words (which are just thoughts…I don’t hear voices) when I ask a question.  And when I’m really a mess, like I was today, I sometimes wail that I just don’t get why I have this horrible body and why oh why do I have one problem after the next with it.  And today when I was doing that, wondering why life is so damn hard (not just for me although today, in that moment, I was only thinking of myself) I got a very strong message back about my life this time around (if indeed there are more than one chances).  I heard: “This one is for the soul” 
It was like all the air seeped out of my bluster with my situation.   And I pray that I won’t forget it.  Because in the end, one life or multiple lives, it doesn’t matter.  It’s always for the soul.  But many people who have busy lives don’t have a chance to ‘get’ that.  Not all, but many.  Even people like me, with one challenge after the next don’t get that.  It’s back to the “May you have an easy life” thing that I  have written about.  An easy life isn’t necessarily what the soul needs.  But who knows, maybe I’m wrong.  I just know my body needs a rest.  And my soul needs to stay open to whatever life brings.

Wednesday, March 14, 2012

Every Breath I Take

I know I write a lot about facing my challenges with grace and dignity (well, maybe not those words, but that’s the message) but lately, I’m overwhelmed with “challenges” and feel like I hit a brick wall.  My pain meds cause horrible stomach distress and constipation that is hellacious…nothing seems to help.   A GI doctor prescribed an injection of something or other but my insurance won’t pay for it and frankly, I don’t want to do that unless it’s absolutely necessary and unfortunately, I’m approaching that time.
I know I tighten up my muscles because of the pain and I try to consciously let go as much as possible.  Plus my jaw is so out of whack, I’m sure that has something to do with it in terms of ‘holding on’  Gosh, no wonder!  I’m holding on to everything and it won’t move on, if you get my drift. How does one continue to have grace and dignity in this situation?  Breathing.  That’s part of it.  Nice slow, deep breaths.  I had this incredible system for combating the constipation but it suddenly just stopped working.  I wrote about it in one of my posts. 

And I've had "blog laziness" lately.  I think I made that up.  Maybe not.  Anyway, I've been reading until my eyes are ready to give, but not writing much.  My posts are small and don't say much of anything....all I do is complain.  Reading that memoir by Ashley Judd got me back on the "I don't contribute" roller coaster.  And roller coasters make you sick to your stomach, so maybe that's why my gastro problems are impossible.  As I write this, I am watching my very favoirte Bette Davis movie...one lots of people never even heard of because it wasn't a big movie.  "Now, Voyager" is the name.  Rent it and watch it.  I just got it out of the library today.  Great flick.
Okay, back to the issue at hand.  Here's what I think.  I think G-d is watching how I handle the millions of challenges that have been put in my path.  I am hoping that when I pass this life, I pass.   Like Sting sings:  I think that’s G-d talking to me.
Every breath you take
Every move you make
Every bond you break
Every step you take
I'll be watching you

Every single day
Every word you say
Every game you play
Every night you stay
I'll be watching you

Tuesday, March 13, 2012

If Only

I received a Barnes and Nobel gift card for Christmas from Becky, a woman whose beautiful daughter Ashley, has NF.   I finally got around to using it a few weeks ago and chose two equally stunning books (I read a book or two a week, mostly from the library).  One was entitled “A Sense of an Ending” by Julian Barnes and the other I’m reading now.  It’s a memoir by Ashley Judd entitled “All that is Bitter and Sweet”.  I hesitated on that one (I enjoy her movies but wasn’t really sure I wanted to hear about her life, which I knew was very difficult before success found her) until I read the back of it. 
It’s about her past, yes, but it’s mainly about her humanitarian work with AIDS in Africa and other devastated countries.  She hates the term “Developing” nations because it’s far from the truth.  I don’t want to go into detail, but it is definitely with your time to read it.  I mention it because as someone with a debilitating disorder, I  struggle with the fact that NF isn’t the only disorder out there and acknowledging the suffering of others is important to my spiritual growth.  And sometimes I want to sit on the pity potty for as long as it will hold me.  But I seldom do, at least not for long (hopefully).
Being aware of the suffering of others is what makes us human.  And taking action on that awareness makes us better humans.  I often fantasize about what I would do with my life if not for the sometimes crippling pain that keeps me from doing much of anything; can’t even sit for more than 30 minutes, so travel is out (and this worries me greatly because my dad turns 88 this month and I want to be able to travel the 1600 miles to visit….but I can’t.  So traveling the world to help (if I could do that…would I?) the suffering is out for me.  But would I? 
That’s always the question.  We always think and often say, what we would do “if only” this or that wasn’t in the way.   And for most, it’s just a excuse.  And I include myself in that group too.  Because I’m sure there is something I could do with my limited mobility. I mean, I have a computer, I blog, I write.  The big thing for me is I can’t always do what I need to at the time it’s needed, and therefore, I cancel dates with friends, doctor appointments, etc. because I am unable to manage because of the pain or the  pain medication.  It’s a never ending cycle and it makes me angry that I can’t get past it.
And that’s the thing about life challenges for most people.  They struggle with this or that (as you will read in Judd’s memoir, should you choose to read it) but most of the time, there is a coming to the ‘other side’ of whatever has confounded your life.  You might never be completely separated from the challenge (the death of a dear one, child abuse, self abuse, etc.) but you will get to the other side, if you choose to do so. 
Chronic illness has no release valve.  But that doesn’t mean you can’t make something out of your life.  My biggest problem with reading books like Judd’s, is that I beat myself up to a pulp, pouring on the should’s and ought to’s.    Which does nothing..  So we must learn to stop doing that to ourselves, or find a way to do what you complain about not doing.

Friday, March 9, 2012

Character Building

May you have an easy life” may seem like a saying by which to raise a glass, but in some traditions, it’s actually considered a curse.   At my sister’s first wedding, when her then father-in-law, one of the meanest men to walk the planet, toasted his son and new daughter-in-law with this saying, I whispered to my friend “He doesn’t realize it, but he just cursed them”   Less then 10 years later his son, my brother-in-law, committed suicide.  I gave thanks that he didn't take my sister and their two beautiful daughers with him.  The back story isn’t important.  What’s important is this:
Without strife, without challenges, without the things in life that makes us cry, frustrated, angry and confused we would be walking around as empty shells.   The things in life that we think we want and make us angry, jealous, and sad when we can’t have them, are meaningless.   Having it easy does not build character; it subtracts from character building.   And by the way, building character is not the same as being a character.  Just in case you were confused (lol).
While I know that in some ways, having NF is a gift, I of course would like to return it most of the time.  I don’t need it anymore, I tell myself.  I’m already as good as I’m going to get in the character building department.  But am I?  And what would happen to me and my values should I say, win the lottery?  Not a measly million dollars either (can you believe I wrote that?  A measly million dollars?  When did that happen?  See what I mean?  Even flat broke, I’m jaded)
If I won, say, 10 million, 20 million, what would I do with it?  I’ve actually put some thought into this.  I know exactly what I would do.  I’d set up a medical trust for myself, give myself a strict budget on which to live, and give the rest away (and I know exactly to whom it would go).  So I say. So I think. So I write.  But in reality, what would happen?  I’d like to think I’d have the same values I have now, and that I’d honor my distribution fantasy…but would I?  Who knows.  So far, I haven’t won.  Of course, I rarely buy tickets either because I can’t throw away even a couple bucks a week.  Still, it’s fun to think about. But  would I suddenly turn into someone my friends and family no longer recognize?  Someone I myself wouldn’t recognize?  Heaven forbid if I became a Republican!  But I don’t think even 100 million would make that happen.  I’d be happy to pay taxes on that kind of money. 
And giving it away to people who are truly in need would not just be something I did because I’m nice (so I think).  It would be my duty, my responsibility.  I think that because I would not have come by it honestly.   I also think people who come by it from hard work have a responsibility to share the wealth, because even though someone may have worked hard to get it, without people to buy the product or service they sell, they would not be successful financially. 

And as I wrote in my letter to my mother (posted here), hard work does not always pay dividends.  We need to stop canonizing successful people.  And successful people need to step up to the plate more, especially in this financial climate.  When the wealthy go running to the hills, afraid that their money will be taken away by taxes (and the lawmakers keep making sure they aren’t taxed) we are in deep trouble.  And we are in deep trouble. We put value on all the wrong things and wonder why we are in the kind of financial trouble we are in. As my almost 88 year old father, a longtime liberal says “When did taxes become such a hateful word?”  He’s right.  Our infrastructures are a mess because we don’t have money to fix the problems.  Yes, there are probably too many taxes, but millionaires who are allowed to keep almost every dime they have is criminal.
So be careful what you wish for and work on who you are in the world.  Be grateful for your challenges, even the ones that hurt like hell (physically and emotionally).  Be generous in spirit and you will be generous in all areas of your life. 
And if you are among the 1%.(and if you are complaining) shame on you.  If you are among the 1% who gives and doesn’t complain, thank you.

Thursday, March 8, 2012

The Rough Stuff

Well,  my gums are infected from the root canal.  So now I’m on an antibiotic.  I take probiotics, I wonder if they’ll cancel each other out? Kidding!!!
This is what baffles me: Because of all the painkillers I take, It took forever for me to feel that there was something wrong before I finally went to the dentist.  But the recovery hurts like hell, even with the painkillers … I can’t win.
I read the “Girl with the Dragon Tattoo” series a long time ago, then saw the original (Swedish version) and loved it.  No one could play Lisbeth like this Swedish actress.  But of course, the states has to make money off the books so they did their own version.  I don’t know how well it did, but I refused to see it.   I’m watching it again right now on Netfilx.  Great movie….
So it’s been a tough week.  I mentioned something about my blood pressure the last couple postings.   I realized a week or so ago that my BP went up when I introduced an anti depressant to my mix.  I wanted to see if I might be right so I weaned myself off (it only took a week) and today, at the GI doc, my BP was normal (for me).  Boy, was I glad of that; I do not need another health challenge.  
I’ve been having some interesting emails with another NF person regarding doctors and their lack of attention with us.  I was telling her my theory about doctors and chronically ill people like me.  Doctors are trained to heal, and if they can’t find what’s wrong, or can’t fix it, they move on to the next patient.  It’s just that simple.  In this day and age with the revolving doors of patients at medical offices , they just to have, or make, the time with each person.  Because of my issues, I’ve seen a lot of doctors on a regular basis, and I usually know something they don’t about whatever the issue is.  It’s a matter of being more familiar with my body and NF issues then he/she.
I have needed a laugh all week,  so before watching the “Girl with the Dragon Tattoo” movie I was watching Ally McBeal (Netflix also).  I can’t believe how it’s held up over the years…it was a bit ahead of it’s time in term of its’ quirkiness.  Still quite funny…a bit dated, but not much.  And I laughed out loud which I needed badly.  So if you’ve never seen it, give it a whirl.  If you use to watch it, watch it again! 
Plus, the music is fabulous….

Tuesday, March 6, 2012

Physically Frustrated

Frustration doesn’t begin to describe it.  I had that root canal yesterday and while I was there, they did a blood pressure test..  I’ve had two or three over the past several weeks for different reasons, and my bp is way too high….it’s ALWAYS been 110/70…one of the only things that works right for me.  My cholesterol is high, but I don’t worry about because I have too many other things to worry about with my body.  But now, just like Oliver (my cat) I have high blood pressure out of the blue.  My pain levels have been atrocious and nothing seems to help that or my bowels, so I guess it makes sense that my bp is high.  Ah, life. 
I took a taxi to the University of Washington Medical Center to see the neurosurgeon who wanted to see me “right away”.  Why, I’ll never know.  I was there in horrific pain so they put me in a room so I could lay down.  He came in and spoke with me, rapid fire, for all of five minutes, did a quick neurological (strength tests in arms, legs, etc.) so fast I could hardly keep up with his instructions.  Then he shook my hand and left.  I had told him all about my new symptoms but he seemed unbothered by them.  Probably has something to do with being on Medicare.  Who knows.
I’m trying not to worry about the bp because that just makes it worse…but it was so out of the blue, I couldn’t figure out why it is happening suddenly.  I’ve always had high pain levels but seldom does my bp go up; at least not as high as it was today and yesterday.  Today, before Dr. Quickdraw, they did a bp test and it was even higher than yesterday.  They said it was probably because my pain was so high; but as I mentioned, that didn’t seem to bother my bp before.
I can’t seem to catch a break, physically.  I’m going to meditate today, call on my helpers on the other side, and see if I can get it to go down.  I see a GI doc tomorrow, so I’m sure they’ll test it again.  Are we having fun yet?
Maybe it's because I started reading the news again.  Bad, Sherri, bad.  Turn off the news, I say.  Which reminds me;.  Rush Limbaugh..  Boycott the advertisers that are still with him.  Even if you think he’s the cat’s meow (can’t believe that people listen to that foul mouth of his….but the dittos out there do love him) no one could possibly agree with calling a woman a ‘slut’ and a ‘prostitute” for wanting the government to pay for a contraceptive to aid in OVARIAN CANCER, not having sex. I mean, the government pays for Viagra (the opposite of contraceptives, but still…the man’s organ rules why not contraceptives?
That’s my rant for today,  Gee, no wonder my bp is high, ya think?

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