Dear Julie – An AVN Diagnosis Letter

Dear Julie – An AVN Diagnosis Letter

Dear Julie, A Letter to myself after receiving the diagnosis of Avascular Necrosis, Psoriatic Arthritis, Complex Regional Pain Syndrome itsjustabadday.com

Avascular Necrosis. WTF?! Like, what the hell.

I didn’t even know bone could DIE?! THAT’S A THING?! WHATTTT!?

For the past few months, you KNEW something was wrong. Something was off. There was no reason you should have been in that much pain.

Yet, your healthcare team told you otherwise.

“Oh, you’ve just overdone it at therapy. Take these Percocet’s and rest for a week.”

“There’s nothing wrong with your knee, you’re just healing.”

“Just keep pushing through. Once you have your range of motion back your pain will subside.”

“Here’s a kenalog injection and a higher dose of pain pills. Come back in a week.”

BUT YOU KNEW BETTER! You KNEW there was something seriously wrong.

December 17th will be a date that you’ll never be able to get out of your mind. Today, when you crutched your way into that doctors appointment, I know you wished that something would show up on your scans. Last week when you had your bone scan done, the technician told you you “lit up like a Christmas tree” (which you loved the holiday reference btw. It was kinda perfect), you knew you’d get answers today.

But the answer you received was NOT the answer you thought.

You anticipated him saying that your ACL finally finished tearing apart or that there was a complication from your last surgery. But that wasn’t even remotely close to the case.

You’ll always remember the look on your doctor’s face when he walked into your examination room.

“Your bone is dead. It’s called avascular necrosis. I know what it is, I’ve seen it before. But I don’t know how to treat it and I don’t really know where to send you…” will echo through your brain for YEARS to come.

You mind will race and question the fact that he told you you’d probably need a knee replacement. Then you’ll think about how he said you can only get 2 in your life. . . and that will spiral into you crying about how when you’re 60 you probably won’t be able to walk.

Your Dad will joke about how once you’re 60 you’ll probably be able to get avatar legs. But it won’t make you feel any better.

Tonight you’ll spend your evening crying.

Crying about how you may not walk again. Crying how you’ll probably need a knee replacement. Crying how your pain IS valid and that there IS something seriously wrong. Crying because you have no idea where to turn.

And while you’re crying, your parents will be crying too.

Your mom will be upset because she can’t wrap her brain around this diagnosis and your dad will be in shock with the news and wish you did something sooner.

You’re 27 years old and 2 parts of your bone are DEAD. It’s going to take some time for you and your family to wrap your heads around it. BE PATIENT.

I know you’re in pain. So much pain that you’re unable to sleep. You’re exhausted. You’re worn down. You’re a wreck.

But, you don’t need to be a hero when it comes to dealing with this pain.

Your parents will ask you numerous times if they should take you to the hospital to help your pain. You’ll pass it off as you’re fine.

But you’re not fine. Take them up on that offer and GO.

Picture from the first hospital room I was in during my week long stay. Dear Julie, A Letter to myself after receiving the diagnosis of Avascular Necrosis, Psoriatic Arthritis, Complex Regional Pain Syndrome itsjustabadday.comI know you want to celebrate Christmas and enjoy it, but you’re not going to enjoy the day. You’re going to end up passed out for the majority of it because you finally caved and took high doses of pain pills. You’re going to end up going to the ER early in the morning the day after Christmas because you’ve hit a breaking point.

Don’t wait – go earlier.

You’ll spend a week in the hospital and you’ll start to get SOME answers. You’ll receive 2 more diagnosis – Psoriatic Arthritis (officially, after having first heard it back when you were a teenager) and Complex Regional Pain Syndrome. As you leave the hospital, you’ll think that your AVN is the thing you need to treat first. . . but it’s not. You need to take care of YOU and calm the storm in your body before you even find a solution for your knee.

Oh, and also… Just to set realistic expectations. Don’t plan on counting on your orthopedic surgeon. He’ll provide you with no help and will just frustrate you more than you need. Your Dad will take it pretty hard, but just know, in the end, you don’t end up needing this doctor. He actually does you a favor by stepping aside because it forces you to go out and find the best possible solution for YOU.

Put on your armor, because it’s going to be a battle for the next few years. You’ll face injections, pills on pills, stomach issues which make you unable to eat for months, nerve blocks, anxiety, depression, melanoma, rejection from over 29 different health providers – just to name a few of those battles.

But guess what, you’re going to be fine.

Actually, scratch that.

You’re going to be more than fine – you’re going to come out on TOP.

You’ll end up changing your whole life to manage your conditions.

You’ll end up having your path redirected to be exactly where you should be.

And, you’ll end up blossoming into the person that you’ve always wanted to become.

You’ll never define yourself by the diagnoses that you receive in December 2012, but you’ll use them to help fuel your passion, motivation and to help others.

I love you and you’re strong.

You’re going to get through this. One day at a time.

SPOILER ALERT: In a few Christmases time, you’ll get to film this video and be well on your way to recovery from your Avascular Necrosis. And, you’ll end up speaking at an FDA hearing regarding stem cells because of your AVN! GRAB THE TISSUES!

Wishing You A Pain Free Day!

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

 

 

 

 

This post was in response to the WEGO Health HAWMC prompt:

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

 

  • Aaron

    This: “For the past few months, you KNEW something was wrong. Something was off. There was no reason you should have been in that much pain.
    Yet, your healthcare team told you otherwise.”
    Julie, what do you think is behind this epidemic dismissal by doctors? Most patients I speak with (myself included) KNEW something was terribly wrong, but we had to fight to get our doctors to believe us. Why do you think that is? Sometimes, I wish I’d seen a vet. Ha. Vets have to really pay attention to their patients to find out what’s wrong. I mean, my dog doesn’t have to tell me she’s in pain. I KNOW when she is, and I’d never dream of denying that it’s really there.

    • HAHA! See a vet! That’s funny, yet SO TRUE. Wow, never thought of that before. Honestly, I think it’s because he had no idea what was going on with me. I wasn’t the typical patient and I wasn’t having typical symptoms. Therefore, he didn’t want to go out of his way to help me. I think a lot of times it’s that. And perhaps it’s unfair to say a lot of times doctors don’t want to go out of their way (in this instance, I believe that was the case), but I’m sure all the pressures they’re under from health insurances and plans weigh in to it as well. For MONTHS I told them there was something wrong. And they acted like it was no big deal. But whenever he told me my bone was dead and I saw the look on his face like “OH SHIT, I screwed this up big time.” He couldn’t get me out of his office fast enough (and not answer my phone calls).

  • Wendy

    I’m using this post for day 29’s prompt on my blog. It will be out tomorrow of course. It’s on picnicwithants.com
    thank you for sharing.