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Thursday, January 22, 2015

Round and Round

I’ve been thinking a lot about my surgery and what I will feel if this doesn’t relieve me of at least some of the pain.  It’s my biggest fear.  Not that actual surgery, but the “what if’s” when down the line, I’m healed from the surgery but the results aren’t what I hoped for.  And when I doctor said “A 20 to 80% reduction in pain” I thought that 20 sounded good.  But what if I don’t get even that?   I have a lot of supportive people in my life, including someone whose daughter has NF and who has been telling me it will make a difference because it helped her daughter when she had pain in her arm.  Bless her for telling me that!

Life is constantly throwing you off track, regardless of who we are.  My washer/dryer broke last week and after the maintenance people tried six times to fix it, it’s officially toast and will take two weeks to replace.  So now I have the laundromat to cope with.  I found myself getting twisted in a knot about it but then realized I do have help and it will get done.  And I’m trying to organize my meds so that I have all I need after the surgery so I don’t have to worry about getting them.  It’s not easy, for one of them isn’t due for a refill until after the surgery.  All these little things are like gnats flying in my face.

So I asked myself, what will I do if it doesn’t work?  If I know that my life will continue to be what it’s been pain wise, as far into the future as I live?  And it’s a challenge.  Think of a big circle.  I start at the abyss at one point on the circle, worried, out of control, in agony and on the pity potty, wanting nothing more or less then death.  Praying for it.  Trying to get those that I love who have passed to help me cross over.  You know…really crazy thoughts.   What stops me?  A couple things.  I tell myself that I am here to learn something, to grow spiritually and to be as gracious as I can with what I have been handed.  And what if I tried to off myself and it doesn’t work?  What if I end up in worse shape than I’m in now?  What will that do to my family?  My family knows how I feel and would forgive me if I were successful, but if I’m not?  Heavy burden to put on them.  So I try and move away from that point on the circle, and use all the skills I have to move forward, stay in the moment, and just accept whatever happens.  And everything lifts for a little while.  I write, watch a movie, play a game, read a book…and I feel better.  But eventually, the abyss comes back around, or I go back around to it.

Yikes.  The NF support group I’m involved in helps.  It will end in five weeks, but we have each other’s contact numbers through Skype.  And I may miss the session after my surgery.  We shall see.  In the meantime, I’m hanging in there, like everyone else!

Tuesday, January 20, 2015


My surgery is coming up on the 30th.  I'll try and write soon after that.

Life continues to challenge, but one breath at a time, right?  Little things that happen to everyone (like my washer/dryer breaking and no new one for two weeks!!) keep me stressed if I'm not careful.  The thing is, life's gnats happen to everyone but when you top it with searing pan, it gets to be on overload fast.  And what makes me angry is how I have no way to deal with those things without needing help from someone else.  I feel helpless and become hopeless.

My NF Skype support is helpful.  Last week, the Seahawks were in the playoffs and horribly behind (I don't watch football, but you get swept away) and I had the site up in the background while I was on the call.  Toward the end of the call, I heard fireworks and thought "Gee, what a supportive city; we lost but we cheered them on anyway"  Then I found out we won.  Funny.

Tuesday, January 6, 2015

NF Coping Strategy Group

I mentioned a while back that I was going to be starting a coping strategy group that NF was sponsoring.   It started Sunday, January 4th.   So far, I am happy I agreed to it.  By the way, if you ever want to be a part of anything related to NF, whether they are Clinical Trials or workshops like this one, make sure you are on the NF Registry so that they can contact you.  Just go to (Children’s Tumor Foundation) and look for the Registry  It’s easy to do and if something comes up that you are qualified for, they will contact you.

I was surprised at all the stuff it brought up for me.  I thought I had a lot of coping skills; I meditate, do acupuncture, write, read….but all of them are wearing thin and I didn’t realize how thin until I heard other people in the group talk about their challenges.  I still have each and every one of them.  And my depression, anxiety, sleeplessness and boredom have reached a tipping point.  Death is on my mind much of the time.  But alas, I have convinced myself I must finish what I started or be destined to repeat it.  And I have no desire to return.

That said (or writ) it was interesting to hear an echo of my own pain, physical and psychic, in the voices of others.  I was impressed at the mobility of one in particular, and felt the pangs of jealousy and shame.  Jealous of her being able to move about in the world and ashamed that I haven’t “made an effort” to do so (not true).  She, on the other hand, felt shame and embarrassment at the tumors themselves.  Most of mine are on the inside and I heard once that people with internal tumors like me have pain issues, while those with the “bubble” tumors on the outside deal more with the stares and the questions.  Either is no walk in the park.  NF isn’t for weenies.  I have to remind myself of the piece I wrote years ago “Bumps of Beauty” posted on this blog.

I watched this TED episode about these kinds of feelings.  One presenter was saying that when parents or people from the outside try to help him (forgot his ailment) he felt he wasn’t good enough the way he was.  I never gave that much thought but I burst out crying so I guess its been an issue.   My parents wanted me to be like everyone else and I just wasn’t.  I did poorly in school regardless of my father’s rage around my inability to do well in math and science.  I did excel in writing and English.  And history.  But I barely made it through.  I was sick A LOT when I was a kid.  Hopefully, attitudes around people who are different have changed, but not by much I fear.  Bullying is more prevalent today, I think.   And of course people who love you don’t want you hurting.  But I think to some degree, having a “normal” child is less work, less stress and fewer tears than one who is challenged physically, mentally or emotionally.  That’s just life.  And “normal” children don’t necessary turn into shooting stars, either.  It’s all a crap shoot.  All of it.'

Just in the mood for this song!

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