Pain Knows no Bounds

Okay,  I know I write about trying to be positive no matter what, but I am really, really overwhelmed right now.    I’ve been holding on so tight, so hard for so long I just don’t know who or what I am anymore.  I don’t feel human half the time, feel useless most of the time and am in pain  all of the time.  I would give anything to have someone, anyone, stay with me for a while, rub my aching legs, make me meals, help with the shopping, the doctor shlepping, rub my sore shoulders and neck, etc.  I do see my healer every two weeks and she does the neck rubbing part, but that’s it.  However, if I let myself feel to much for too long, I’d really make an attempt on my life, so I just shut down.  It is worth it?  I can’t really say, since I know no alternative lifestyle. 

When I was 40 and a friend was taking me home from the hospital after my first spinal surgery, the guy who lived next door saw me and asked what was wrong.  I told him about my NF and it’s challenges.  Briefly, trust me.  He looked at me a long moment and said “Shit, I’d have just killed myself a long time ago”  I burst out laughing and said "Then it's a good thing you aren't me"  Because at the time,the idea of suicide was completely alien to me .  But that was before my brother in law took his life and I saw the shattered pieces of our family strewn from New Mexico to Minnesota, to Washington and back again.  I heard the anguished cries of the family, the stricken looks, and the comments from the ones who were not surprised.  None of us were surprised, really.  Just shocked.  It's shocking, even if it's expected. .  Still,  If I had seen my own future, I may have agreed with the neighbor.

My pain is through the effing roof; the tingling keeps moving up further and further….starts at my feet moves up both legs and is now nearing my waist.  No wonder I have digestive issues; I have lost the ability to go.  The pain, the numbness and the disappearing of feeling…it’s like I’m a tree with all it’s leaves falling down.  I’ve had all these dental issues and now I just found out I have another close to two grand problem.  I need another root canal (8 and counting) and I still haven’t done the 3^rd crown that was the first round of dental problems.  I can hardly chew anymore….my jaw hasn’t gotten better either.

This is not a challenge to the Universe, so if anyone out there is listening, don’t interpret it as such.  But….HOW MANY PROBLEMS CAN ONE PERSON HAVE?  Phew.  There, I said it.  Pity Potty be damned.  Sometimes, you have to scream “Uncle” (where did that come from?) and not worry about what other people think.  The truth is, there are ALWAYS people who are worse off then you (or me).  That will never change.  You can’t pick up the paper or turn on the television or even, just look around you.  Okay, that being said, it feels rotten to feel rotten all the time.

Sick and tired of being sick and tired doesn’t touch it.  And I do plenty of “alternative’ stuff as well….if I could flush all these damn pills down the toilet I would in a split second (once I was safely off them….trust me, there is ZERO mental attachment to this crap.  In fact, I am always perplexed and astonished that people do this for “recreation”.  I get that there are back stories I know nothing about.  But if being born with NF isn’t a ‘back story” I don’t know what is.

And pain is pain, whether it’s physical, emotional, spiritual, etc.  Whether it’s self imposed or the result of the “luck” of the draw, it’s all the same in the end.  I mean, even if there is no physical “proof” of anything being wrong,  it still hurts to hurt.

Still, being in pain from spinal tumors, losing all feeling, needing things that are way out of my tiny budget and not being from a family of extraordinary means, it’s beyond difficult.  I work my butt off to find deals for this or that, forgiveness for medical bills, charity applications…whatever it takes.  I don’t think people around me know or appreciate all that I do to save a couple of thousand dollars a year.  I don’t want a medal for it anyway; it’s my job.  But eventually, I will not be able to do those things.  I don’t want it to get to that point.  I want to exit.

My financial dependence on my father has got to put an enormous burden on him…he’s got his own health challenges and is older then me, naturally.  I want out so bad I can taste it.  In the meantime, a girl can still dream, regardless of her age.

Vivere et vivere

I saw my healer yesterday.  I’m starting some liver detoxifying supplements for a week.  She said the reason my intestines aren’t responding to all the stuff I’m doing is because the liver is challenged from all the drugs.   I mentioned that my liver function test came back normal, but she said the western way for testing isn’t the same as what she is talking about.  I believe her.  So I started them yesterday.

I’m so tired of this stuff I could spit. I should see if I can find a spittoon somewhere and place it next to my couch.  I don’t think they make those anymore!

I’m trying to stay away from the news; it seems to me that when I go online to read things, or when I watch it on television, my mind goes soft and I stop writing here. Must stop.  Must stop now.  I prefer to write.

I use to love Anderson Cooper, but that stupid show of his has got to go.  He’s making an idiot of himself with those guests of his.   I hope he returns to his former life as a correspondent.  Point in fact: yesterday, he had on a woman who WANTS to be a paraplegic; she goes through life in a wheelchair and leg braces even though she needs neither.  She downhill skis in the hopes of breaking her back.  I found it horrifically offensive, given my situation and the situation of so many others out there.  She claims she was born in the wrong body and has known her entire life she was suppose to be in a wheelchair.

On the other hand, and bear with me here, I sometimes feel I was born in the wrong body.  In fact, I have an excerpt from a poem called “Piano Solo” by Nicano Para that reads “I want to make a noise with my feet, I want my soul to find it’s proper body”  The whole poem is beautiful.  So if I want that, why shouldn’t she?  Even if what we want is the antithesis of each other?  Who can say what her soul experienced in another life (assuming we had them) or what event happened that made her want to be in a wheelchair?  Life is strange, and we are strangers to each other, so I don’t want to judge.

I think that being in the situation I am in, and the situation many of you are in, makes us more sensitive to other people’s predicaments, but it’s really hard not to just write off this woman as being “some kook”.  I think the Internet and the instant information age has made us more aware of the different kinds of people out there.  I feel like the world is shrinking more everyday and at some point, we will flicker out.

In the meantime, practicing patience, acceptance and gratitude is a must.  I kind of hate the word “tolerate” so I didn’t use it.  I hope we can do better than “putting up” with certain things.  Like the differences in how we love, how we pray, etc.  Of course, I would never tolerate the kind of hatred that seems to infuse certain people with the energy to take the kind of action (suicide bombers, for instance) that hurts others.

Other then that, Vivere et vivere (Live and Let Live)

Blessings

Over the Top

The conundrum of wanting to be done with this life and being scared of all the things that seem to be tormenting me is horrific.  On one hand, I am so ready to take my bats and balls and go HOME and on the other hand, and with chilling clarity, are my worsening symptoms that scare me and make me run to the doctor.  Why not just let it do what it’s going to do…why fight it if I want to go HOME.  I’m so over the top. 

My healer told me she thinks the dizziness I get when I turn my head a certain way is vascular.  She practices acupuncture and chiropractic and told me the test for vascular for chiropractic is the turning of the head in one direction and the other.   So she thinks it’s vascular.  On the other hand, the compression on my C spine could be the culprit.  I see the neurosurgeon soon, so we’ll see.  I go on the 8^th,.  They wanted me on the 1^st, but and 8:30 a.m. appointment would never work for me.  I’m I too much pain at that time of day and it’s a long drive to boot.

In the meantime, my stomach is awful and I’m afraid to eat anything, though I know I have to. Had my usual this morning, with the exception of the flaxseed meal.  I think I have too much bulk in me at the moment.  But NOTHING works (I haven’t tried blasting caps…that’s next on my list, lol)

And if that isn’t enough, I went back to the endodontic dentist today (went four weeks ago) because she wanted to see me in a month.  I was in so much pain the first time she couldn’t tell what the problem was.  So my choices are: doing another root canal (I’ve had EIGHT...bad teeth, too). To the tune of about $1,700 after all is said and done, or have the tooth yanked and call it a day.  That would be about $300.  I have a call into my dentist to see what that would mean in terms of my bite.  They may have to do a bridge and if that’s the case, I may as well do the root canal.

I hate this so much I want to scream!  And I’m so worried about things out of my control; the world, for instance.  The space between the haves and have nots is growing wider with each breath, and there is nothing I can do about it.  Here, at least.  Why I think I could make a difference on the other side, I do not know.  But I don’t seem to be making a difference on this side!’

And my dear friend, the one I wrote about in “The Scapegoat” has lost her job.  I’m so angry for her and I feel so helpless.  Wish I could make it all better.  For everyone.

Worrier or Warrior?

I haven’t accessed my “helpers” for a time.  I’ve written about them here, somewhere.  I could use them now.  I see them clearly; both grandmothers, though mostly my dad’s mother; my own mom, an aunt, and “little Sherri” who is about six or seven.  She’s a great help.  Remember the “inner child” craze?   I use to call it my inner brat, but she’s not.  She’s sweet, loving and makes me feel safe.

Everyone has a little them on the inside.  Try and access anyone you know who has passed.  Someone you loved and trusted while they were living.  It’s simple.  Just sit very quietly and think of them.  That is it.  There is nothing “to do”  It’s one of those “to be” things, not a to do thing.  Picture them and take whatever comes up.  Do not judge it, do not tell yourself it’s stupid, etc.  Take the first thing that comes to mind.

Taking the first thing that comes to mind is helpful in many situations.   Remember, the louder the voice, the more judgmental, the less you should listen to it.  It’s the quiet voice with the most wisdom and power.  And the beauty of it is this: the more you honor it, the more the judgmental voice will slip into the background and the wise voice will be in the forefront.  But you need to start honoring it, listening to it and trusting it.

THIS IS NOT THE SAME AS HEARING VOICES THAT TELL YOU TO HURT YOURSELF.  It’s the opposite.  If you think you should hurt yourself, get some help.

But if it’s just the day to day stuff about NF (or anything else) that has you stuck, try seeking help from the other side…or the inside!!

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A worrier, or a warrior, which one am I?  Well, it depends on the day, of course.  And lately, my days have me in the worrier category.  I want to be upbeat, especially for those new to NF who want a little encouragement instead of a lot of complaining.   But I am worried about my digestive tract, which is getting worse all the time.  Going three weeks without…going….isn’t good.  And nothing helps.  I go through phases, but this one seems to be lasting a lot longer then normal.

So let’s dream a little.  What would you be, if you weren’t ‘grounded’ by NF?   I have many fantasies about what I’d be, but in addition to being well, I’d have to be 30 years younger.  Oh well, that’s where the word “fantasy” comes in, right?

For instance, I started watching (but quit…nothing but books keeps my attention) a movie about a bounty hunter (job).  That looks cool.  But again, she’s in her twenties.  Tough, smart, sharp, physical strong and well.  And she carries a gun.  Well.

A  doctor.  Neurosurgeon.  Guess that one is pretty obvious, eh?     

A  Lawyer.  Mostly because I have a friend going through something challenging right now and needs counsel that she can ill afford.

My favorite:  A LOTTERY WINNER!  Here’s the deal.  I have spent time (not a lot…I did it twice in my life) writing down exactly how much I win, how much I keep (setting up a medical trust) how much to live on, and the rest would be given away; to friends, to family and to charities.  I firmly believe it would be my duty to help others, should I be blessed enough to win a significant amount of money.  

On the other hand, my biggest fantasies are about how I’d help once I get HOME, or attaining powers here on Earth.  Earthly  powers include all the usual; invisibility, flying, second sight (I actually have that but I have to access it during meditation and I sometimes can’t do it).

I realize these are crossover fantasies; all the unearthly powers “on the other side” being available here.   But that’s the fun of it all, right?  Once on the other side, I’d come back as an angel, helping those in need, mostly those I know.  Helping the suffering, the sick, the persecuted, etc.  Maybe I could do that on the other side, too.

The Green Team

I know that constipation comes with having NF, and when you add strong painkillers to the mix it doubles the discomfort, but this is ridiculous.  Short of blasting caps, I have tried everything, and I do mean everything, and nothing is moving anywhere.  Usually, when it has been a few weeks, I go running to the gastro person, but they never find anything out of the ordinary.  I am certain that there is a tumor way up high in my intestines that is causing this.

My usually fix just stops working sometimes.  Every morning, without fail, I eat a couple spoonful’s of lactose free yogurt with some fresh fruit and flaxseed meal, take 500 mg of magnesium in the morning and another 500 at night, 1000 mg of vit C; it ALWAYS works.  For most people, they’d have the opposite problem if they did all that.  For me, it just keeps things humming.  And when it stops, I add the usual stuff people take for this….none of it helps right now.

Don’t want to get graphic; this was graphic enough.  But since we all have the same challenges, I figure someone else out there may have the same problems.  If so, please tell me about it so I won’t feel so insane…..I don’t need your name; just comment on it so I know I’m not alone.  I’m sick to my stomach, I feel like I can’t go anywhere just in case it suddenly starts to work again (and there are things I need) and my brother came over earlier in the week and wanted to go to lunch but I couldn’t.   Then my sister came over the next day; same thing.   And my computer is on the fritz, which has nothing to do with anything except it’s getting harder and harder to write anything.

Oh….I got a call from the neurologist that my pain doc wanted me to see.  They wanted me to come in on the 1^st at 8:30 in the morning, but there is no way I can get myself anywhere that early.  I’m up at 7; rising isn’t the issue.  Pain is.  And in rush hour traffic, it would be over an hour drive…not doable.   He said “But he wants to see you immediately”  But it has to wait until the 8^th, at 10:30.  I’ll tell him all of this.  I already have a neurogenic bladder.  Methinks I now have a neurogenic bowel.   Augghhh!!

I suspect that the tightening of my jaw all night (night guard is worthless) might be causing some of my problems.  If I tighten my jaw, I’m surely tightening all my muscles.  I try to be aware of it during my waking hours; I notice my legs are tightening, my arms….every body part.  My body does that to protect myself from the pain, but the reverse is better for the pain.  I wonder why it tightens up like that if it makes it worse.  And I’m not sleeping well, so the tightening is probably just as bad at night as it is during the day.  Maybe it is even when I am sleeping.  Who knows?

Okay, regarding the title of my post.  I’ve been rubbing some cream (called “Cream of the Crop”  Clever, eh?)  in it that has 1% cannabis.  Legal.  Doctor’s order (in case the feds are watching)  I don’t ingest it and it really doesn’t help with the pain, but it feels nice rubbing it into my jaw and my feet..  If anyone out there lives somewhere that allows you to get it with a doctor’s order, I suggest you do so.  That is the ONLY thing that really helps.  I’d get rid of everything else, but I also need to function and can’t if I have too much wacky tabacky!

Ah, the joys of chronic illness!

Pray for Faith

I wrote this in February 2009, exactly three years ago.  I never posted it for some reason.  But it seems I’ve been a bit dark lately so here’s a more upbeat post!

I try not to talk about my NF and the pain that it brings me too much because talking about being sick drives people away.  My dear friends and my family stay with me no matter what, but to the casual or new friend, I must be careful.  Because it does drive people away.  Sometimes at lightening speed.

I know it has nothing to do with me personally; it’s hard to hear someone talk about serious health issues, probably because it brings up mortality for people, a subject they just as soon stay away from, particularly as we age, and particularly in the health crazed world we occupy here in this country.  Who can blame them?

Still,  I was grateful that I am who I am, even with my challenges.  I would not trade a day of it, believe it or not.  Why, you might ask…all that pain, pain you can’t describe, and you wouldn’t trade it??.  Well, it’s simple really.  Because it’s mine, you see.  It’s me, it’s mine, and no one can take it away.  I’ve asked myself many times, what I would do if an angel came down and offered to take all my tumors, all my pain, all my illness….in exchange for my friends and family.  And of course, I would never in a million years do that.  But would I do it if the offer was to just take it away, with wanting nothing in return?  What would I do then?

Still, the answer would be no.  Because I think I am who I am because of these challenges, and in spite of being a whiner and complainer some of the time, in spite of being in pain most of the time, in spite of being unhappy half of the time, I’m who I am all of the time.  And I don’t want to be anyone else.

I’m truly happy for all the people in my life who, in spite of their own personal challenges are for the most part, healthy and happy.  I am truly grateful for their lives and grateful that they are in mine.  I am grateful that for the most part, I believe in G-d and have hope that in spite of the miserable mess we have made of this planet, there is hope.

Pray for Faith.

Unreliable Scoreboards

Fear sometimes clutches it’s hands around my throat and squeezes until I can barely breathe.  And that’s what has been happening lately.  My legs and feet are so numb I can barely feel them.   What I can feel is cold.  But other than that, even after a full night’s sleep, I can hardly walk and I’m without feeling, except for the pain.  It’s scary beyond words.

Sometimes it’s so hard to know what to do.  Part of me wants someone to come in and take care of me; get me to my appointments, help with the shopping, the cooking and the cleaning.  And Oliver’s care.  On one hand, I could use that help.  On the other, forcing myself to keep moving forward like the shark (who never stops moving or dies) keeps me mobile, though unsteady.  Its impossible to judge anything anymore. 

I wrote the following to my mother a few years after her passing in 1998, and I’m thinking of that now.   We saw her as weak; but she was stronger and braver then most of us can ever hope to be.  Why I couldn’t  see that then, I’ll never know.

Dear  Mom,

I’m sitting here, trying to pinpoint the moment in time our relationship fossilized.   When its’ rehashed comments and responses became so etched in each of our psyches that they may never be erased.  I write “may never” because no matter what, there is always possibility.   Even time and space can’t trample on possibility, so long as we are open to changing that which we think is unchangeable.  At least that is what I believe.

Blame is something the entire family embraced and practiced well.  Unfortunately, you were the target of much of that blame.  We all perceived your dependency on others as weakness of character; your lack of what the world sees as “accomplishments” as failure to achieve, seldom recognizing your goodness as achievement of the highest order.  We confused dependency with need, making it a hateful four-letter word.  Now, as I near fifty, I see myself as having what I thought were your “weaker” qualities, especially the “lack of” type that are only measured here on Earth.  And being ill, I now need many of the things you did, like help with finances and occasional assistance with my mobility.  The fact that I drive and worked most of my life didn’t release me from what I perceive as failure.

Some say we are put here to accomplish things, making ourselves into people that others can point to and say, “Oh, she’s a doctor, lawyer, astronaut, teacher, musician.”   What we have trouble coping with is how little those things really mean.  Still, being none of those things, I sometimes think of myself as having all zeros on the scoreboard of life.  I’ve been looking at the wrong scoreboard, Mom. 

I’ve been forgetting who you really were.  Your sweetness, your loving kindness and your astounding soul.  You overflowed with those qualities.  Do I possess any of them?   If so, then why is it so important for me to be seen in a way that I know deep inside means nothing in the long run?   Certainly, not everyone has that need.  There are entire societies that know how to acknowledge and cherish the values I sometimes toss aside. 

You know, Mom, I left my birthplace in 1986 in part because of my relationship with you.  Your dependency on the family drove me nuts.  And as much as I loved you, I was beginning to hate what I believed to be your weaknesses.  You didn’t drive.  You didn’t work outside the home.  You didn’t seem to have any hobbies.  You volunteered, but not much.  You were artistically talented, but didn’t pursue it.  I was so angry about so many things.

And yet, when I wanted to move away and started crying at the thought of how much work it would take to make that happen, you turned to me and said, “I’ll miss you like crazy, but you have to go.  Don’t be a big scardy cat like I have been all my life.  You can do it.”  And you cried.  And I cried.  Those words are forever etched in my psyche. It was the bravest thing I ever heard you say, and in that moment I was so proud and thankful that you were my mother.  I still am.

But in a way, your response also scared me because now I had no more excuses.  It had been 11 years since I promised myself I would move, but you had been my stagnant pretext.  I got to blame you and your dependency and be mad, instead of just taking the risk.  And now the jig was up, so to speak.  You threw the ball squarely in my court and I had no one to blame, only a risk to take. 

Our relationship got better after I left.  But soon, you really started to get sick.  Little by little, you disappeared on us.  Sometimes I am terrified I will get Alzheimer’s and have no control over myself, my life choices.  I’m halfway there with my current illness.

When I went home to help Dad get you settled in the assisted living facility, you had a cogent few moments, and said, “I like this place but I don’t want to live here alone.”  You cried.  I cried. Dad cried.  I thought I would never forgive myself.  Dad thought I was blaming him, but I wasn’t.  In fact, I wished he had done it sooner, because you were so sad all the time and he was irrational and truculent about taking care of you.  Only he couldn’t be there 24 hours a day, of course.  He would take off occasionally, and whether he was gone a few minutes or a few hours, you would be all alone, not knowing what to do, not knowing who or where you were half the time, and frightened.  The hole in your heart was abysmal and dark, and your endless tears drowned nothing.  And I was 1600 miles west..  Dad finally got someone to come to the house half time, but it wasn’t enough.  After you went in the home, you seemed happier for a short time.  Then you just got smaller and smaller until you flickered out. 

We were all there on that day; I felt your presence until the moment you let go.  As my head rested on your chest, I felt your life-force move through me in a halting intake, then out my mouth in one big gasp that came with your last breath.  My head reeled up and I wailed,  “She’s gone” to the rest of the family, who were gathered around you.  The essence of you vanished in an instant, leaving behind a vapor trail and the casing that was once your body.  I felt G-d’s presence twice in my life; once when I witnessed the birth of your first grandson, my nephew, Benjamin, and in the moment of your death

I know all those things I think of as success aren’t what really matters, even though the world tries very hard, every single day, to tell me otherwise.  Our “success” in the world is far different then what starts as gold stars delved out to us as preschoolers.  And those gold stars are all too often the chrysalises of what becomes the canonization of over-achievers.  Our society rarely recognizes that hard work doesn’t always pay dividends.  And yet we frequently forget, if ever we are taught, the Golden Rule.  But you taught it to me in spades.  I only wish I could appreciate all that you were, without beating myself up so much.  I know you are never very far from me.  I sometimes feel you a foot or two above me, to the left, smiling down.  I turn to you during those times of despondency, and once, while meditating, I “heard” these words:

 “Sherika, my sweet girl”  (Your eyes are glistening with tears.  I feel one hand on each of my cheeks.) “You are so brave.  I know you don’t think you are, but it’s true.  That cynical side of you is racing to catch up, telling you it’s not hard to be braver than me, who wasn’t brave at all.   But that’s not what I mean, and your soul knows it. 

You feel you don’t belong, but if you are there, you must belong, right?  It’s taking me time to adjust to being on the other side.   I miss you so much.  I miss your Dad.  I’m happy he is with someone.  But it’s not as easy to let go of jealousy as the movies make it out to be.  There are bits and pieces of what we once called our humanity that want to cling to the life we just left.  But the worst is over. The disease.  And I know that’s what you want for yourself, too.  I wish I could help you in that department.  I wish I could say something that doesn’t sound like it belongs on the bumper of a car.  I wish I could see you, touch you, and talk to you the way we use to when I was well.  I know we can in some ways; and we must be grateful for that, and leave the rest behind.  I know you want the things that seem easy to have; romantic love, health, success.  All I can tell you is to open yourself up to it.  And yes, I know that hasn’t worked for you in the past.  Maybe it won’t work now, I don’t know.  But doing nothing, that we know reaps nothing.”

I miss you, Mom, but I hear your words.  And I will see you when I see you.

Love

Sherri

Philosophical Reconfigurations

Between the ugly bruise, the stomach, the dizziness, I decided to call my acupuncture/healer for help.  I was getting dizzy spells turning my head in one direction and also, my blood pressure has been up from what it normally is.  I’ll assume it’s stress from being constipated, but we’ll see.  It’s still within normal range but a lot higher than what it was, which was low.

She needled me and did her thing and opened up some chi energy and I started to sob like never before.  I mean, I’ve cried while getting treatment (few people get a ‘thank you” and a hug after they make you cry!) and I needed the release.  I hold so much back; the truth about my situation, the pain, etc. 

I love my family dearly and I know how busy they are; but still, I have a sister and brother  from who I could use a little assistance (not money) but the conundrum is if I spill, they get freaked and want to ‘fix it’ in ways that aren’t agreeable to me…moving me closer to them, which would accomplish less then nothing due to their schedules and actually make it worse for me in terms of my friends and my doctors.  But they don’t get it.  Just get new doctors would be the reply….and when you are chronically ill and HAVE  good doctors, you don’t just replace them.

And friends?  They are closer to me in miles than my family, but not by much.  It wouldn’t hurt for me to live a bit closer to the city, though that wouldn’t help family..  My lease is up in a few months; we’ll see.  I just don’t know if I can tell the truth the way my healer suggests.  It’s scary.  She suggests I should tell them I need some support, but I can take care of my own needs for the most part.  I hope they’d be open to that and not so black and white.

But we have the cost to think about and it won’t be cheap.  Which is why I want to exit on my own terms, under my own steam.  I just want to make sure the job gets done; ending up in a vegetative sate would not be good.  And Divanna told me about someone she knew who took 120 pills and lived to tell the tale.  They found her unconscious and she should not have recovered, but she did.  One wonders.

Is there a G-d and would he/she forgive this transgression?  I can’t imagine a loving G-d rejecting me; on the other hand, he gave me this predicament in the first place.  It’s so confusing for me…what to do….Read “Love, Suicide and Popcorn Pans” on the last page of my blog.  It about sums it up for me!

Really.  I don’t think I could ever take my life but I sure think about death a lot.  I keep trying to think about what my purpose is here, what I did to deserve this body from hell and how do I fix it?  Most people don’t make the time to think about their purpose in life because they are too busy LIVING their lives.  When you are chronically ill, you’ve got the time.  In spades.  Now logically, I know I did nothing to “deserve” this, but that doesn’t help.

Here’s what I don’t understand about Karma.  If you were rotten to the core in a previous life, why get punished in this one, where you are a good person?  I know the soul is different than the “I” or ego, and that’s what is in the process of learning, but it still makes no sense to me; if your soul is a good one in this life… see what I mean?  .I ask for forgiveness daily, but I guess I just have to live out my life first.  And then there’s the old “Catch-22” that I rail on about.

If I allow myself to live my whole life the way the Universe, or G-d, or whatever intended, and there is NOTHING afterward, who or what would I be mad at (myself, primarily) for allowing myself to live in pain for over 50, 60, 70 years when there is NOTHING after you die…no Karma, no afterlife, no next life.  Nada.  So if that’s the case, it makes sense to call it quits, right?  Wrong.  Because we don’t live for ourselves, we live for each other.  But what if, like me, you have no significant other?  I have family and friends, but just my family of origin…none that I created.

I’m feeling quite philosophical today, aren’t I?

In the meantime, I reconfigured my living room for the new couch and I love it except for some reason, my neck feels worse when I am on my computer or watching television.  It shouldn’t really be any different, and I don’t want to go back the old way; I wanted to spice things up since the only thing I see most of the time is the inside of my apartment.  It works fine for reading, which I do a  lot of, but right now I’m hinked out.  Maybe it’s my pillows….I use to use two…okay….trying two…..BETTER.  Don’t you love the minute by minute updates?     Being ill gives a whole new meaning to the term "couch potato"

The Pain Train

Every time a new symptom  appears (the new bruise) like more numbness, more pain, etc., I get scared.  Part of me is so ready to call it quits (not literally taking my life, but giving up the fight) I wonder why I freak; but fear of more pain probably has to do with it.  

Saw my pain doc and he made a referral to a neurologist at the UWMC where I go (University of Washington medical center) but when I called, they had no referral and would not let me make an appointment.  In the meantime, I have increased weakness, increased pain and of course, unexplained bruising (that looks like a pressure wound…not just a little bruise….but I’m not laying flat 24 hours a day…I move around a lot) and so forth.

So I called the pain doc and left a message and they called back (when I was out, naturally) and said to wait a week for them to call me.  And then the appointment will be sometime after  Chirstmas of 2020 (guessing) because that’s how long it takes to get it, hence, I wanted to make the appointment a.s.a.p.  Not only that, but they have a new system whereby you speak to someone with no medical training who decides whether or not to put you through to the appropriate person, so you have to explain in detail to this non medical person why you want the appointment and only then do they put you through to the correct person who says “sorry, you need a referral" after you've explained to them AGAIN why you want to go in and see the pope.  It's hopelessly broken.

I swear, our health system is so screwed up it’s hard to believe anyone gets seen for anything before their body is being viewed by an ME (whose a doctor, I guess but your dead so what does it matter?)  I’m sure in my case it’s because I’m on Medicare and they don’t get reimbursed enough and the people on Medicare don’t have the money to pay the 20% of their share.  I use to have secondary insurance but it went up to over $700 a month for ONE PERSON.  And unless I had surgery, the difference between what Medicare paid (80%) and then the 80% of the 20% that the secondary paid (they only pay 80% of their share) didn’t add up to what I paid in premiums.  So if there was $100 left to pay, the secondary only paid $80 of it. 

So now I have nothing but Medicare and they know it….so I’m last in line for everything.  And right now, I need to be at the front of the line.  But what’s funny is that as much as I say I’m ready to let go, I still freak and get scared when the pain train comes rolling in.  My neck is out of joint, my bruise hurts like an SOB (I couldn’t figure out why my leg hurt where it did until I saw that bruise) and of course, the tingling and disappearing of body parts continues.

On a lighter note, my cat Oliver can’t quite figure out what happened to his living room.  New couch, new arrangement.  He gives me dirty looks all day…he liked it better the other way.

Too bad, so sad.

A Bumpy Remider

Last night I found a bruise roughly the size of Rhode Island on the back of my left thigh.  It was huge.  And ugly.  All sorts of colors.  And I could not for the life of me figure out where, why, when and how I got it.  Three months ago there was an equally ugly, though smaller, bruise on my left foot.  It was freaking out.   And my gastro problems are back with a vengence so all and all, life is more of a challenge.  And I was washing my face (I usually do it without looking) and saw all sorts of tumors popping up all over, espcially around my mouth.

And I rememered what that woman in a “support’ group said to me almost 35 years ago…I wrote it somewere  on my blog but I can’t remember which piece.  Anyway, at that point NF wasn’t really troubling me and you couldn’t tell by looking at me that anything was wrong.  The woman who talked to me had tumors everywhere and she looked at me and said “I looked like you at your age…you wait” and stalked away.   I’m parapharasing a little, but you get the gist of it.  So I’m re-posting this as a reminder to me.

BUMPS OF BEAUTY – by Sherri Silesky

Airbrushed beauty beaming up from the pages of magazines and down at us from billboards marching proudly on our city streets, brightly lit at night so that we won’t miss the larger-than-life smiles filled with too-white teeth, straight as the light bulbs that shine on them, the abundant, radiant hair that glimmers too, the creamy white, black or brown skin flawless and blemish-free even though we know it’s not true, we believe it so we buy the soap, the toothpaste, the clothes and once upon a time, the cigarettes but that’s all over why is there not a law against the rest of it?  We know it’s not true, because we see each other on the streets, in the workplace and at school every day and we see the imperfections we are all born with save the few who make it to the pages of those magazines who still, even with the born perfections, must have more perfection airbrushed into the lines and creases to make sure that perfection doesn’t get by us mere mortals.

We know it’s not true, as we stare into the plate-glass windows of the stores that hold our fondest wishes; the things we covet and believe we can’t live without yet behold!  We still live. The things just out of reach but will never be ours and even if we get them they somehow leave us feeling empty which should be a lesson.  As small children we played in and around the boxes that held the toys rather than with the toys themselves but then of course, we got older and that wasn’t enough and the airbrushed bodies that hold the goodies we now want but most times cannot have start to look good, so we begin to covet them and continue to do so forever unless we learn it’s not true, oh my.

We know it’s not true when we are born with the most imperfect bodies even more imperfect than the normal overweight, blemished, lopsided smile, crooked-nosed, large-jawed, legs to short, arms too long, hair not right, neck to long, butt to big human being.  And here we are, with bumps that cover our bodies in numbers too many to count that send us into the shadows in shame or to the operating table alongside the ones with the tumors inside, large and small that run up and down our legs and arms, in our chests, our organs or crawl up our spines leaving us in mind-numbing pain or confined to our wheelchairs or beds far away from the billboards of beauty.  But it’s okay, because we know it’s not true.

And if that’s not enough there are those who can’t walk, can’t see, can’t hear but miraculously, somehow, overcome all those obstacles and emerge more whole than the airbrushed beauties the smart ones know to ignore.

What a miracle it is to be born whole and how unlikely, is it, really, for that to happen given all that could go wrong in the cell dividing process of becoming human.  The culprit, thanks to science is identified in genes 17 and 22 on that ladder of life, DNA.  That twisting, turning  Escher-like double helix , the tell-tale spell binding truth of who we are, what we are likely to become.  

We wait for the time-bomb of our NF to go off; will it be soon, while we are young? or will it skulk around in our bodies, dashing about or hiding behind organs, tissues, nerve-endings, tiny, meaningless until — until something, who knows what, ticks it off and poof! they grow, these tumors, these parasites, pushing about like bullies on the playground, growing faster, bigger then the rest of whatever else is in there and soon, like the bully, it pushes on the nerve-endings too much and the host body is racked with pain as the doctors scratch their collective heads wondering what in the world is wrong, have you seen a psychiatrist?  An MRI? Well, okay and we slide into the cigar-like tube with earplugs to dull the sound of the thud-thud-thudding and the cluck-cluck-clucking like the coconuts used to make the sound of horses running in  Monty Python’s Flying Circus. I laughed so hard in the first of my 30 or so MRI's that they had to stop and start again but it turned out not be funny at all.  

So my first surgery was at 40 which is late, so I’m told and according to that first MRI at age 36 when there were so many tumors one neurologist who didn’t know me assumed I was in a nursing home but was, miraculously, living my life just fine thank you. So this was quite the shock to learn that I could be paralyzed from the neck down if I didn’t have the surgery and maybe even if I did.  It all depended on if the tumor was sitting there like a grape or wrapped around the nerves (which wouldn’t be good) but it was like a grape and I am not paralyzed though sometimes with fear, I am. 

 So now it’s back, the pain though this time in my lumbar spine and the pills I am on to stop the pain could put out my entire apartment complex though my body has become accustom to them and they practically don’t work, which means trying different pills oh heavens this is too much I just want to be normal, whatever the heck that is.

Somewhere in our hearts we know it’s not true, all the hubbub at the Oscars, the Emmys the Grammy’s, all that glitter and perfection all gathered together so we can gawk and wish we were there, or them or both.  If this NF of ours teaches us anything it should teach us that it is not true; not the billboards, magazines, movies, television, awards — none of it.  None of it is true.  We are true.  We with our imperfections, our bumps, our tumors, our disfigurements teach us this truth.  We are the truth because one must search deeper to find our beauty and any treasure hunter will tell you that the find  makes the dig worth it.

Truthful Lies

While being truthful has always been important to me, being totally honest about my pain and the challenges of my NF doesn’t seem the way to go.  Hence, I lie a bit.  Part of the problem for me is that I live alone and am isolated a lot.  This is a sore spot with my family and me; they want me to move closer to them…but the truth is, everything else that is important to me is close to where I now live.  And I’d be more isolated if I lived closer to them, and they are so busy all the time it wouldn’t make a lick of difference anyway. 

So here are our choices, the way I see it.  We either tell the truth and risk alienating people because it’s scary for them to watch and to hear about and we know that, so we sometimes choose plan B, which is to lie through our teeth and if we can, if we are mobile enough, get ourselves to our doctor appointments, get our own groceries, etc.   That is getting more difficult, but still doable.  I just need to plan, and knowing that my “good” days are few, make sure I get everything I need when I’m feeling well enough to do so.   So the truth is, we’re okay, we can take care of ourselves (so far)  but we keep some to ourselves because it’s scary  to think someone will put us away somewhere, whether that’s logical or not.  My question is this:  If you are so worried, why not call more often?  Just a thought.

My previous post was about my couch.  I got a new one which is being delivered Tuesday, and I gave away the other one; it’s all happening the same day so no “down” time without a couch.  I guess I should say no “up” time!  In the end, my brother and sister in law did pay for about half of it.  I still feel bad asking for help….I don’t just feel bad, I hate it with a passion.  But I’m on my back all the time and the thing is falling apart and my lower back is starting to hurt.  No more pain, please!   While I’m writing this I’m watching “Vertigo” on Netfilx streaming.   I still read a book a week, but I use to read two, sometimes three.  That was before streaming!!  I love these old movies and am thankful it’s cheap to do this.  Something tells me the honeymoon is coming to a close.  I hope not!

Couch Trip

I’ve started to read the news online again, which is probably why my pain levels have been through the roof and my gastrointestinal problems have come roaring back to life.  Or ceased to function, however you wish to express it.  Need to stop it.  Now.  And that’s my wise advise to all those out there in pain who are news addicts.  Stop reading it, stop watching it.

The problem is boredom.  I read two books a week and write on my blog and other places, but the pain keeps me home 80% of the time, flat on my back.  What’s a girl gonna do?  My poor old kitty keeps me busy; he takes as many meds as I do!  Well, not quite, but you know…

And while I’m on the subject, I want to express my opinion about a drug worse than any opiate out there.  Television.  Comcast (don’t know how far their net is) is a drug like no other.  They keep ratcheting up the monthly fee and we keep paying it because they have us addicted to all the gazillion channels and options for watching.  Never mind that they have DISABLED the fast forward feature on their remote for watching programs after they aired.  We pay for that remote, I personally don’t think they have the right to disable something we pay for.  AND (I’m on a roll now) I called to get rid of everything but basic, and was going to get rid of the Internet and phone as well and find another provider and they told me the price for reception only and it’s MORE then it would be for lots of channels (if I got rid of the Internet and phone).

Talk about your rip-offs.  I don’t know what I’m going to do but I’ll tell you this: unless and until the vast majority of users call and cancel EVERYTHING including basic, they will keep on doing what they are doing; raising their rates every other month.  And the chances of the majority of people canceling is nil.  Even in this economy, people can’t live without television, it seems. I don’t miss it because I stream.  That may be the only saving grace.  And Comcast knows that.

So, on to other news.  I’ve spent so much  time flat on my back on my couch that it has broken down a bit and is uncomfortable for me.  So I went couch shopping and placed my current one on craigslist.  I have two people interested, and the first one sounds like a done deal.  Well, I’m giving it away because I figure the cost of having someone pick it up would be saved.  Now I need to coordinate the new one, which I need to go look at again today and arrange.  My loving father won some money at the casino and sent me some of his winnings, so half of it is paid for!

I talked to my sister in law about this and she offered to give me an old couch of theirs but it’s not right; I need one with specific features like “pillow” arms, not wood, which is what they have.  And I want microfiber because it’s the most comfortable, which theirs isn’t.  I thanked them and said no.   She said they would help me but I think she was talking about coordinating, not financial.  I asked for some help then decided I didn’t want it…they have a lot of expenses and I felt bad asking so I told them to forget it.

It’s hard sometimes…she told me about all the things they were doing, the trips they are going on, their daughter’s year abroad, their son is going to study in Vietnam for a semester….I start feeling like the slug that I am, and I went crazy and asked for help.

Does this happen to anyone else out there?  Anyone on disability who can barely make it month to month even with help?  I mean, literally every stick of furniture I have (except the couch and one chair) is over 30 years old.  It’s functional, I don’t care.  I just feel sorry for myself sometimes.  Mostly because of my situation and the pain.  And the constipation.  And everything that goes with being in chronic, intractable pain.

New Hospital, Old Problems

I am so tired I can barely keep my eyes open.  I saw my pain doc yesterday and I’m going to try and cut back on my neurontin to see if my balance gets better.  I went to pick it up just now and the cost doubled for me this year.  My part D plan went bye bye so they threw me in another one which is less per month, but the per prescription went up on three  of them, and they don’t cover another. So it evened out.  I got rid of  most of my cable and did a few other things to cut costs and I’m STILL worse off then I was last year.  Sigh.  And I’m so tired all the time I can’t stand it.  I wake up a few times each night but fall right back to sleep most of the time.  But I’m exhausted all day. 

So my pain doctor okayed medical marijuana for me….he did so a few years ago and I never made it to a dispensary.  So I finally went a few weeks ago and they turned me away because it had expired.  It’s so weird; the names of the places are very discreetly placed on the outside, but unless you know what you are looking for, there is zero indication of what they are.  It’s so sad, that we treat medical marijuana the way we do.  Nothing takes away my pain like the green stuff and I’d like to do it legally….it maddens me that we are so closed minded about pain medication….well, if you’re reading this, you know.

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Okay, I took a break – a day, actually.  I have been talking to my friend T who also has NF.  His is more advanced then mine, but when I met him five years ago (we are too far from each other for any more visits...pain keeps us from driving)  he was about where I am now, physically.  His tumors (most of them) are in and on his spinal cord.  He’s had several surgeries and has posts and bolts and whatever on his spine.  He is now pretty much coffined to the bed and his power chair.  My spinal tumors are mostly around the spine, but the spinal compression gives me symptoms much like his.   And of course, the tumors and the scarring.

He told me he was in the ER recently for his digestive issues and they gave him diladid IV and how that made the pain go away.  And I remembered when I had surgery and what it felt like to not be in pain.  I remembered crying because I WASN’T in pain, and what it felt like to be pain free.  When you cry because you’re feeling good, you know you’ve been in pain for a very long time.

Anyway, we talked for hours and he told me some horror stories about his stay in the hospital.  I’ve had horrible things happen to me in hospitals too  For my friend T, he had a nurse try and give him the wrong medication several times, regardless of what he told him.  He finally told him to scan his bracelet with the information, and of course, T was right and nurse was wrong.  The nurse, who was reading the information off a computer screen (in the room) had the name of the patient wrong….but before scanning T’s bracelet, just kept telling him he was “confused”.  Then he gave him all the meds he neglected to give him five hours prior (T had his light on for three hours and finally called the hospital from his room to get the nurse on the line).

The hospital itself is state of the art, brand new ad shiny as a newly minted penny…but he said the nurses were poorly trained and not responsive at all.  Maybe not being responsive is a good thing when you’re poorly trained.  It’s nerve racking being sick.  No way around it.  Sigh. (I’m doing a lot of that lately….actually it’s good for your airways to sigh).

Balancing Act

I didn’t sleep well last night and lack of sleep causes my pain to shoot up .  I need to get at least 8 hours for the pain to be at a “6” on the 1-10 scale.  Today it’s at an 9 and it’s not even 10 a.m.   Then I get angry and then it gets worse.  It is beyond frustrating, all the things that make it worse.  Here’s a little lesson on negative/positive thinking:

Pain is:

Worse with lack of sleep                  Better with more sleep

Worse when I don’t eat                     Eases off with food, especially protein

Worse when I do too much               Better with a lot of rest

HORRIFIC without medication         Tolerable with every dose

Worse when I’m too emotional         Better if I meditate, listening to soothing music

Worse if I never emote                      Better if I allow myself to cry occasionally

Worse without “alternative” care      Better with acupuncture, reiki, massage

Worse with isolation too long           Better when I see someone once a week

That’s all I can think of at the moment.  Feel free to add your own in the comment section. There is one which is hard to write about because it depresses me.  A friend called yesterday and said I should throw my walker in the car and go somewhere for a short walk.  Good advice.  It’s pretty hilly in Seattle but there are some flat places I could go.  Obviously, exercise helps with a host of things if you can do it.  My pain feels worse if I move too much, but if I don’t move enough, other things start to fall apart…..I get constipated from the drugs, my heart races, my muscles atrophy….etc, etc.

But even walking, which is about all I can do, makes my pain shoot through the roof.  I went out for dinner with a friend last night and I can’t sit for more than 20 minutes without horrific pain so while doing that is enjoyable, I pay a high price.  But the socializing is good for me and I have to get out once in a while!!!  Balance.  It’s all about balance.

And today sun is out, the sky is blue, it’s going to be in  the high fifties and it’s Super Bowl Sunday which means I can go somewhere and there won’t be crowds of people.

Sometimes I’m so frustrated I could cry.