Yesterday, Dr. Julie said to me, “Steph, you are such a good writer, I wish that there was some way someone like you could share your story with others who are experiencing chronic pain.” I was very honored by Dr. Julie’s compliment, especially considering the fact that she has only seen my writing through regular medical emails.
When I got home from her physical therapy appointment yesterday, I opened my blog for the first time in weeks… Who is “someone like me?” She is a 30-year-old woman who has lost her youth. She is a person who lives with pain day and night, hour after hour, every second of every moment in her life. She has to say “no” to family, to friends, to parties, to baptisms, to the movies, to church, to helping others, to funerals, to after-school meetings, to going on dates with her husband, to traveling, to birthday parties, to even petting her dog if that dog happens to be lying on the floor lower than the degree she is allowed to bend forward… She used to be an athlete; she played soccer, softball, was on the swim team, voted co-captain of her cheerleading squad, took tennis lessons, joined a kickboxing class every week, did yoga and pilates daily, enjoyed gliding down Grant’s Trail on her bike, even trained to run a marathon… Someone like me wakes up every morning afraid of the day, knowing that even if she planned every second of that particular day, something unexpected could occur that would trigger a degree of pain that was unbearable and she wouldn’t know how to make that pain go away; not that it would matter, for the pain, no matter how intense or minute, never truly goes away…
Someone like me does not have blood coming out of her ears. Her bones are not wrapped in a cast. Her skin is not black-and-blue. She does not have tubes coming out of various places in her body. She sometimes doesn’t even walk with a limp…
Dr. Julie understands this. However, she said that if others-like-me had a voice, maybe people in their lives would understand the severity and daily burdens of someone like me who suffers from chronic pain…
It’s been a while since my last update… A LOT has happened, both in my personal and medical life… The last blog I wrote, I dedicated it to those friends and family members who have been there, by my side, through it all. Three days after I wrote that blog, one of those very important, wonderful, special people passed away unexpectedly. Since that tragic day, even though I know writing this blog is both therapeutic to me and informative to those who read it, I could not make myself sit down to write it. However, after talking to Dr. Julie yesterday, I realized that Someone-Like-Me needs to keep writing Something-Like-This….
Medically, the tornado has touched down again. While waiting for my operation report (aka, the “op report”) from The Surgeon’s office, I was able to sneak a few post-operation x-rays to Dr. Julie. Dr. Julie had been waiting for these x-rays because she had a hope and a theory and a plan to treat my pain. Upon reviewing the x-rays, however, even her hopes were shaken…
For weeks, Dr. Julie had been focusing my treatment on my hip alignment; however, she was concerned because she knew that The Surgeon added “extra” screws to my pelvis during the spinal fusion surgery. Dr. Julie was afraid that the screws were inserted into my iliac joint – according to the x-rays, her fears were confirmed. Because the screws are where they are, my body is extremely restricted. Dr. Julie said, “I don’t know how your surgeon ever thought that you could recover with these screws located where they are in your body! They are restricting your body to such a degree that it is reacting with severe, acute pain directed mostly to your hips – which are over-compensating for the restrictions in your back; however, the screws are also restricting your hips….”
Why did The Surgeon put those screws in those particular spots? We don’t know. I had to go through a very tedious process at Wash-U which involved contacting the Records Department, waiting for release forms, completing such forms, sending them back to the Record Department and now I have to wait 30-45 days to receive the op report, along with any additional information that we could get from The Surgeon that might shed some light onto the function of the screws.
My first reaction to the news of the screws was, “Do I have to have surgery again to get them removed?” This question TORTURED me. The pain that I experience every day is a paper-cut compared to the knife literally in my back and the pain that followed that excruciating surgery. Once I got home from the hospital, I recall begging Gage, “Please, don’t ever let me have surgery again; I couldn’t do it; I can’t do it again…”
Dr. Julie said that there are many risks to getting the screws removed. More importantly, she said that option is not going to be discussed until more information is discovered. Dr. Julie wants to wait for the op report; then she will consult with a Physiatrist regarding the physical impact of the screws. If, in the op report, Dr. Julie clearly sees a functional reason for the screws, then her Medical Team is going to do everything they can to “structurally create a dysfunctional way” to work with the screws and still provide treatment that will lesson the restrictions in my body and, with all hope, decrease my pain. If the op report does not clearly explain the function of the “extra” screws, then she said we would consult with several other medical doctors (including surgeons) to review the risks and benefits of keeping the screws in the back versus removing them.
And now I wait… I painfully wait… Dr. Julie cannot officially begin a specific Treatment Plan until we get the op report and she then runs the information by a series of professionals. So now, while I wait, Dr. Julie and her amazing staff of physical therapists, pain management specialists and Biofeedback therapists, receptionists and office manager try to help keep the pain at its least.
Someone like me, today, is all screwed up…
No comments:
Post a Comment