A Letter to Myself on the Day of My Diagnosis


Nora,

Today’s a big day for you. You have been waiting for this day for years.  You have been in pain for almost two years now with no diagnosis. As you pull into Children’s Hospital of Pittsburgh and check in for your appointment, you have a million thoughts running through your mind. You sit in the waiting room in front of the diagnostic center for complex medical conditions, and you’re wondering, hoping and praying you will leave with a diagnosis.

You go into an exam room and the doctor comes in. She is the most thorough doctor you will ever meet. You will be asked a million questions, she will examine you, and then she sits you down and says, “You have RND.” What on earth is RND? She explains it is reflex neurovascular dystrophy.

You will start a physical therapy program as suggested by The Children’s Institute, and you will be sent to children’s pain clinic.  Don’t worry, the team is absolutely amazing. The whole team will suggest more physical therapy and medications to try, and you will also be told you have complex regional pain syndrome (CRPS). Don’t be confused; this is not another diagnosis, but another name for RND.

You will start an intensive physical therapy program. You will be there four hours a day, four days a week, plus a home exercise program. Let me tell you, it will be brutal, and you will be pushed to your limits, but trust me, the physical therapist knows what she’s doing. Although your pain won’t decrease by much, your functioning will improve.

Because of all the time spent in PT, you will be on homebound the spring semester of your senior year. Despite the odds, you will still graduate with honors and a 4.2 GPA. It will be the proudest moment in your life. You will spend the rest of the summer in PT, and you will move into college, only to be put in a boot in September. You will have some rough moments after that. At an appointment with your doctor, you will receive some of the worst news of your life. You will go into that appointment with severe pain that he can’t relieve. You will feel your heart break inside of you, and any last bit of hope you had for pain relief will be taken away. It will take everything you have not to cry, but you will the entire way home.

I can’t tell you if you will ever be pain-free, because as I write this to you, I sit here in severe pain. But as you go through life, you will push yourself harder than you ever imagined. There will be days when you feel like you can’t possibly move on, and there will be days that you just want to give up on everything.  You will have people talk about you, behind your back and to your face. You will have people tell you that you are a hypochondriac and doing this for attention. Not only will these comments come from your peers, but it will come from a few of your family members, and believe me, it will hurt!

If I could give you any advice, it would be not to stress. Everything will work out. Just believe in yourself and try your hardest.  Don’t look back on the bad days; just look forward to the great ones ahead of you!

Nora

girl sitting on the train tracks, smiling and looking at the camera

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