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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!

1 comment:

  1. I am someone who can relate to your pain. I too suffer from NF and its associated pain. I am a male, just turned 57 and am in pain every day. My pain has got progressively worse over the years and especially the last 5 years. I rarely sleep because of the pain. I still manage to work full time somehow at a factory job, luckily it isnt real physical for the entirte shift. I find a way to cope with the pain, but it is to the point now to where I am not sure how much lomger I can keep doing it. I have not asked for any pain medication from my Doctor as I dont want to appear to be a druggie looking for a fix. My last Doctor told me the pain was all in my head, I was depressed which was causing my pain, he did not want to believe me that I was hurting so bad. I wanted to punch him, but instead I fired him and found another Doctor. This Doctor is unsure whether my pain is from my NF, possible fibromyalgia, or something else. I also have associated arthritis pain in many of my joints. This Doctor says I qualify for disibility and should go on it. I cant do that as it takes so long for approval and there are still bills to pay and I am a single person who has to pay all the bills. Somedays for me are better than others but I am in pain every single day, and with physical activity, the pain gets worse, yet I suffer through it. There are nights and days when I am laying in bed hurting so bad, praying for the pain to stop, and in the rare times when the pain does subside, even a little bit, it feels so good. The majority of my pain is in my upper torso, but I do get pain over my entire body at times, down my legs, and a little in my feet. I have several NF tumors on my body. I have had several troublesome ones removed. I have one child whom I passed this damn disease down to and I feel so guilty over it. He is an adult now but he has had some serious issues and surgeries to remove larger tumors. I hope and pray that there will be a break through one day to find a cure for NF. To the best of my knowledge there is no support group in my area for NF. I came by your post and wanted to say hello. LIke you I am too blessed in that I have a home and food and family and friends and have it better than some people, yet living in agony every single day, the crushing pain gets so hard to deal with. I think I am at the point where I will have to get pain meds just so I can get through daily life. I would like to hear from you, maybe we can become on line friends and help support each other, share tips, and maybe a laugh or two. My name is Roy. My e mail; is Take care and God bless


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