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Conversations with a younger me

Posted by on January 1, 2014

So many emotions and challenges on the journey

 

As I approach being 3 years out from my SI fixation surgery I realize I have been asked the question, “Would you do it again?”.  Funny thing about life and most experiences is you grow through them, as a result of them, or sometimes in spite of them.  I hate when this question comes up because how do I answer that…. really?!  Did I have a successful surgery…  of course I did.  I live this amazing life that  never dreamed would ever happen… but I also know WAY more now than I did when I went under the knife.  I thought I was a well-informed patient, and I was… but just like the medical professionals we see, I didn’t know what I didn’t’ know!  How do I see my success now?  Lucky… damn lucky.  As I have seen so many other online friends have the same surgery with seemingly the same symptoms and same diagnosis at the same surgeon and have such horrific outcomes…. would I do it again?   Honestly?  I have no idea how to answer that question anymore.  The REALITY that I could have come out of that surgery FURTHER disabled was not something I considered 3 years ago…. it is now.  Was my pain horrible, was my life a shell of existence, did I feel as if I might die day in and day out… yes.  Did I think it could be worse?  No….. I thought I might not get better as a result of surgery, but it never occurred to me I could get worse.  I understand that now.  So what would I tell that younger me?  Here are a few thoughts….

 

To the 18-year-old me that got hurt….
 You are NOT unloveable because of your pain… physical or emotional.

There is a man out there who will see how beautiful you are, despite all you can not do.  Please don’t hide from the world.  It’s ok that you can’t ski or hike… not EVERYONE does that anyway.  Enjoy living the life you can, and be safe within it.  Don’t quit because of fear, but stop putting yourself in situations your body can no longer handle.  You have no business skiing down a black diamond in Colorado…. you just don’t!  The youth group kids and the boys will like you JUST fine if you stick to the greens, or even hang out in the lodge.  Your attractive, enthusiastic, smart and interesting, you don’t have to push the envelope on extreme sports.

Your first PT was right, about everything.
1. You will have to manage this forever, you will get better but you can’t ever get lazy!
2. You will need surgery and surgery still hasn’t caught up to the real problem – they can’t replace your ligaments, all they can do is bolt your pelvis together.  True in 1993, still true in 2014…. that’s sad :(.
3. You might want to consider not having kids… maybe adopt… it will be hard on your body
4. NEVER stop doing your exercises, always stay in shape, keep the weight off and keep your core strong ( I did the best I could and it was priceless advice!)
5. You have a sprain to your SI joint ligament complex, most people won’t recognize that.  Don’t worry about it… if they can help who care what they call it, if they can’t help… move on to someone who can.

6. Only you know how much it hurts, don’t let others down play your pain, it’s yours and yours alone.
7.  Your medical team should work WITH you, YOU have to be in charge of you and your decisions.
8.  It takes longer than anyone really says it will to get where you want to go, don’t give up, keep fighting, you deserve it.

God is NOT punishing you.
Ok, I know you think you have done some unforgivable things, and you have deep deep wounds, but dear sweet Amy, God did not do this to you on purpose.  This is not your thorn in the side like Paul.  It is an injury that happened in a sport you love that will affect you for a long long time, but PLEASE do not tie this to the emotional trauma in your life right now, they don’t belong together.  As for why does He not take it away…. sweet Amy, you got good care and a diagnosis so much sooner than others in a year where so little was known.  God WAS looking out for you, you just didn’t know.  The pain is as bad as you think, but it’s not because you deserved it.  There is no way you can see into the future and I promise you God will take this horrible pain, and seemingly endless experience and he will use it and your passion to go back to school , to start a blog, to share what you have learned, to help start a foundation, all of these things come out of this experience, and it’s amazing.  So no, God is not punishing you and he will use this to mold you and teach you, and it’s not what you wanted, but it will bring good things into your life.  So please, stop crying and BELIEVE God loves you as much as he says he does.

To the version of myself in pain trying to figure out what to do next and where to have surgery!

If it looks to good to be true it probably is.
You have waded through so much material and spoken to so many surgeons…. Your asking important questions, but what you don’t know is NO ONE has the answers to them.  Not yet anyway.  Just because someone SOUNDS knowledgeable doesn’t mean they are.  You’re a patient so you have no reason not to believe what people say, but Amy…. you know how to research claims.  You wanted to believe the information you heard so desperately that you left logic to the way side.  You wanted a medical professional to be in charge so you didn’t have to be anymore.  THAT was your mistake. You gave up control, you ignored answers to questions that made you want to ask more, but you didn’t.  You were so tired, so exhausted from fighting that you just laid down and let someone else sooth you and tell you it would all be ok.  It worked out for you, it didn’t for others.  You were lucky.  You never held as tightly to the “alignment” issue as others… yes, it makes perfect sense.  Yes, you wanted it as part of your surgery BECAUSE it makes sense….But here is the deal…. no one knows HOW to measure that.  Checking those boney landmarks…. turns out that doesn’t make the surgery more or less successful… just puts you out 1,000 bucks plus airfare, hotel and food.  Stay at home if you need a revision.  ALLLLLLL those others surgeons seem to have a point when they say the  body relaxes when your knocked out… they might not be right either, but Vicki and Dr Weiss can’t prove they are any more right than every other surgeon who does this surgery without PT alignment…. soooooo yeah….

Let go of the idea you “should” be better in 6-8 weeks.
Your PT keeps tell you this is going to take as long as it takes.  STOP comparing your recovery to a sheet of paper or what the surgeon said.  Yes, your surgical wounds will heal in 6-8 weeks… you have a lot more to heal from after that.  IT will be hard, it will hurt, it will be scary. Dont’ beat yourself up when you can’t make yourself get better faster.  Your doing everything you can.  Eating right, sleeping, doing what your PT says, taking your meds, and resting as needed….. you WILL get better but it is going to take a LOT longer than 6-8 weeks… and that’s ok.  Your going to learn a lot about you and you might even find a whole new life wrapped up in this recovery.

NEVER give up on a dream.

For my friends thoughts on this same topic visit her here:
http://abeautifulcollisionsijd.com/2013/12/28/two-and-a-half-years-advice-id-give-myself/

 

 

 

 

2 Responses to Conversations with a younger me

  1. Lisa

    Dear Amy,

    Not long after you posted this I woke up one morning while visiting my spiritually adoptive mom in CA, gingerly rolled onto my side to push myself up and grimacing from the pain and then went to stand and a surge of pain I had not ever experienced brought me to the floor. I tried getting up but my lower back, butt, hips and legs were hurting worse than they ever had since my disc replacement and fusion of L5-L4-S1 in 2007 that I could not stand. I lay wailing in a fetal position on the floor as my mom raced into the room. She got me on the bed and knew that my si joints had finally revolted and my body was betraying me in the most painful way. My cane was useless to get me to the car so we could get to the ER. I was evidently not returning home to Kentucky that day.

    I ended up staying with my mom from January 13, 2014-March 13, 2014 when we started the cross country trip to get me home. The over 4hr plane ride was out of the question. I had seen a well respected spine surgeon and the only one trained to do si fusion where my mom lived but after insurance denied 3 times we decided to go home.

    I saw my pain doc first who put me on oxycontin and oxycodone for pain. I had been on hydrocodone 10/325 since 2009 and then since that morning the CA dr tried percoset, Opana, lyrica, and then settled on dilaudid even though I was still in so much pain I cried a lot. He put me on a sleep med and xanax which taken with benadryl would knock me out for 4hrs, all the sleep I got in 24hrs.

    My pain doc had to also put me on 2 highblood pressure meds because my usual low bp was now so high along with a heart rate that stayed in the 120’s she was afraid I would have a stroke. I was on a depression med, sleep med, vitamins, nerve pain, natural meds for anxiety and infections and Naltrexone, which at its lowest dose caused me to throw up forcefully so I had to stop.

    I found a renound dr who was one of the first drs to use the Ifuse system, written a paper and was doing his second study for Ifuse. He was also working with Ifuse to get insurance co to start approving the surgery. Despite this my insurance co had denied every appeal he or we did in 2014, 6 in all. He said he had hopes for approval in 2015 due to the change in CPT codes and the fact there were rumors Medicare was going to approve.

    All this time I have not walked even 2 steps, stood for more than 20 seconds, sat upright for longer than 1hr without crying in pain, lost 25lbs, lay on a bed in our basement 24/7 only to get up to use the restroom or take my weekly shower, and I only leave my home for my monthly pain dr appts.

    January 5 of this year I saw my surgeon and we appealed yet again and in 2wks I was denied. My husband and I did our last appeal and we were denied. I’m now beyond depressed. I do not see any friends cuz we had just moved to KY from IN in 2012 and I could barely get around so I stayed home a lot. I have 4 of our 7 kids still at home and have not seen my son play soccer since Oct 2013. I sent my youngest two boys to school after homeschooling them all their life. I cannot get SSI cuz my husband makes too much but not enough to pay our bills, I’ve only worked 3mo in the last 26yrs so I can’t get SSD. I’m still on oxycontin and oxycodone but because the oxycontin is over $300/mo I will have to switch to something else and it doesn’t hardly touch my pain. I’ve slept only 4hrs since Saturday morning and eaten rarely and thrown all that up. My husband and I have not been intimate in over a year. I don’t have any hope that my surgery will get approved anytime soon and there is no way to raise the money to do both sides. I’m tired of just surviving. It seems no one really cares how this has affected my life and I’m wondering if I need to do something to wake them up. You are blessed to have your surgery approved.

  2. Antoinette

    Dear Amy,

    You have been through so much. It is hard. My Si problem is in no way in comparison to yours. I do identify with your feelings when you said about God is not punishing you. I have felt that God was punishing me for being mean to someone or about saying or doing something unforgivable, but I say to myself God is a forgiving, living God. He wouldn’t punish me.

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