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It's too long to tell

Hello, I am new here and to forums in general. My story feels too long to tell but Here it goes... I am a 52 year old single mom & former teacher. After 4 neck surgeries, 2 anteriorly & 2 posteriorly, I am fused C2-T-1. I wish I could say I was better, but it has been 1 1/2 years since my last surgery, and I’m not able to work, or do much without hurting myself.  I am finally fused, but it is at a cost. Its been a long road. 

I’d like  to find someone with the same levels fused to talk to. But also just looking to learn about how people live with pain, support their families, learn to be a different person really. How to deal with not really having a “valid” or “socially recognized” injury or illness like cancer , ALS, or being paralyzed. How to stop trying to explain to people. 

Im not all doom & gloom. I’ve made some  progress i’m proud of & I have my good days, but I’m struggling & need help. 

Thanks

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Comments

  • memerainboltmemerainbolt IndianaPosts: 5,916

    Hi stillhummingbird!!

    I cannot relate to your fusion but I can relate to your chronic pain, depression and dealing with people. I had lumbar surgery almost 10 yrs. ago and everything was fine for about 6 yrs. Then it failed and scoliosis also hit. Along with the depression came the anxiety, guilt and having to basically give up my life as I knew it. That has taken the help of a psychologist for the last 4 yrs.
    But I have learned how to cope better on this forum than anywhere, reading what other people go through and talking to them has let me know I was not alone.

    I don't make excuses anymore for the way I am. I did not ask for this or cause it in any way. I've heard all of the remarks, just as you have, are you better? When are you going to feel better? Now, we just say "no, it will only get worse". They usually have nothing else to say. You can't live for other people and you certainly cannot control what they think. So I quit trying. I have not heard from some friends in ages. But yet almost every day I hear from people on this forum I've never met. 
    Below is a very good article that holds true to all of us.

    I will be more than glad to talk to you as I'm sure other's will too.
    Take care and please keep us posted.

  • Thank you. I so appreciate the response. 

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  • Thank you David. Sometimes I think I'm getting better about not trying to explain myself, but I keep slipping back when pushed to do things that I know that I can't do without causing myself too much pain.  Then, I am always hurt and saddened by people's  response to my efforts and general lack of empathy. It's frustrating to watch myself fall into the negative cycle when I am already struggling.  I am praying that I will find a way to survive on my disability and be able to just do what I am capable of without the judgement of others.  I think in doing this I will find more things that I am capable of doing that I can enjoy. 

    Going up to C3 & then C2 was a game changer for me, especially to C2. The limited range of motion that I have now causes too many issues coupled with basically the same pain after a year.  I try not to ask myself what if...

    What instrument do you play?

    Suzanne

  • Thank you so much David!  That is my goal. I actually did find a hobby that sparked my drive, that and taking my kindergarten nephew to school everyday. Those 2 things were games changers for me, but they also gave friends and family the perspective that I was fine & should be back at work. I wish I could work. Life would be much easier. 

    I’m still new & uncertain of this forum set up,  so please let me know if I am asking too much. 

    I was wondering what ‘overdoing it’ means to you?

     Also,  I am hoping to find someone who is fused up at the top like me...C2. Do you know anyone?

    Smiles,

    Suzanne

  • memerainboltmemerainbolt IndianaPosts: 5,916

    I was reading your thread and thought about "Christine's Spoon Therapy". My psychologist let me try it on him, he was amazed.
    Below is the link. This will hopefully help people understand more.

    christine's the spoon theory

    Take care

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  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 294

    Stillhummingbird, let me add my welcome to the others. I'm fused C2-7 which is similar to you  but I don't know if going to T-1 makes a significant difference. My last cervical fusions was in late June 2018 and my neck is completely healed. I do have occasional pain in my neck and I'm quite limited in how much I can read or be on a computer. I had one recent incident where my left hand became numb. My pain doc prescribed a steroid pack and it made a huge difference in the numbness. I'm also fused L2-S1 and have struggled with pain since 1983 or 1984. How do we chronic pain patients deal with others misunderstanding of our issues compared to the "valid, socially recognized" medical problems? For me, it is an ongoing and frustrating experience because when I had cancer and chemotherapy people understood that it was horrendous and supported me throughout the 5 years I struggled with it. Chronic pain is completely different. People look at me and most probably think, oh, he looks good or they will say you look like you are doing great! I've basically learned to keep it to myself and not look for understanding from others --- outside this wonderful forum!!! I cannot imagine how hard it is for you to deal with your chronic pain and be a single parent!! You are an inspiration! I really wish I had an answer for you but the previous posters have said what ever else I can think of but I do hope you find a sort of happy medium within yourself. All the best, Jerome

  • Stillhummingbird,  Just want to say welcome!  Regardless of what our particular disabilities are, we all understand dealing with people, wanting to work and be productive, and dealing with pain.  It's hard for a person that has never experienced chronic pain to understand although we may look OK we aren't.  We learn to smile thru the pain and try to appear as normal as we can.  Given time, it just becomes something you do without even thinking about it. 

    Like Sandra mentioned, working with a good psychologist has helped me so much to deal with everything.  It took time to find the right one but once I did, it was life changing! 

    @Sandra, thanks for putting a link to the spoon theory! 

    Anyway, glad you are here hummingbird.  The people here are the very best and are always here to help.

    Cindy

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