✰My whole story (scoliosis, chronic illness, everything)✰

Hi everyone! Welcome back to the blog! Today’s blog post is my story! All of it. Yes, all of it; basically my scoliosis, chronic illness, hospital, everything story. The other day I only had one assignment to do for school so I busted this story out. It’ll be a long one so grab a snack and hold on. Let’s time travel all the way to October 2018.

October 12th, 2018. After months of excruciating back pain, uneven shoulders and hips, countless chiropractor appointments, we finally got an appointment with an orthopedic surgeon at Texas Scottish Rite Hospital for Children. We will call him Dr. R. we met with him early in the morning at their Frisco hospital, he sent me for Xrays and that’s when we found out I had a right thoracolumbar curve of 45 degrees. Dr. R told me my curve was stable and it wouldn’t progress since I was done growing. Lo and behold I was not done growing and it did indeed progress. He also said I wouldn’t need surgery since it would not progress. Fast forward to March 29th, 2019. After many more months of back pain, we met with another surgeon at Scottish Rite. we'll call him Dr. S. he was the kindest surgeon I had ever met and I was so glad we decided to meet with him. He knew I had scoliosis but wanted to do Xrays to ensure it didn’t get any worse. That’s when we learned it had gotten worse and spinal fusion surgery was needed. He and his nurse went over the procedure, the hospital stay, what vertebrae they would fuse but none of it felt real. We scheduled surgery for a few months later, on August 13th. We left the hospital and continued our lives as if nothing ever happened.

Summer came and went and my surgery was just days away. I didn’t feel too nervous and I was actually excited to get it over with! Knowing I would miss 4-6 weeks of school, we planned to do online school through Liberty University. The day before my surgery was my pre-op appointment.

I met tons of people had accomplished a lot that day. We met with media, lab, radiology, research, dietary, respiratory, the pharmacist, my surgeon, and my nurses! By then, my curves had gotten up to 55, 23, and 24 degrees. I was pumped to get my new titanium spine. Then surgery morning came. I put on my scoliosis shirt, grabbed my bags, and headed to the hospital. When we arrived, we went into my inpatient room to do some stuff before we headed to holding. At this point, I was delirious and had no idea what was going on. After a lot of waiting, I headed into surgery. 3.5 hours later I came out with my new spine. I spent roughly 4 boring days in the hospital but I loved every minute there. I’m not going to get into my recovery too much since I vlogged it all on my youtube channel!

Around 2 weeks post-op, I developed an infection in my incision so I headed back to the hospital three times for that. In the midst of the infection, I started experiencing joint pain but my surgeon blamed that on inactivity. After weeks of that same pain, we tried seeing any doctor who could tell us what was the cause. Several doctors said it would go away as I got more active. We also thought it could be a metal allergy to my rods, so we did testing, and that ended up coming back negative. We were furious. Something was obviously going on. We tried to get a referral from my surgeon to rheumatology at Scottish Rite because we were thinking I had somehow developed arthritis or lupus. We were looking for any answers at this point. The pain began in September and I didn’t get into rheumatology until January. January 7th, 2020. This day shaped who I am today. After lots of bloodwork at different hospitals, offices, and doctors, I was officially diagnosed with Amplified Musculoskeletal Pain syndrome or AMPS for short. AMPS is also called Juvenile Fibromyalgia. This diagnosis brought a lot of confusion; how did this even happen? They believe the infection triggered AMPS. a few days later we did urgent ultrasounds on my joints to ensure there was no underlying damage.

We later went to see rheumatology again for some other issues but it all tied into AMPS. my headaches, fatigue, pain, morning stiffness, sensitivity to light, chest pain, hair loss are all caused by AMPS, supposedly. My rheumatologist recommended we went to Mayo Clinic in Rochester Minnesota. We aren’t too sure about that yet. She also noticed that my feet turn purple and are ice cold and diagnosed me with dysautonomia. Between my surgery and all of these diagnoses, I had been to the hospital 40 TIMES! That’s insane!

i finally met with pain management in june of 2020 and they confirmed the fibro diagnosis and started treating my migraines as well. after months of trying to manage them, i was referred to neurology. i was admitted to their floor and started intense treatment. its been up and down since then but pretty stable! i'm currently on a monthly injection called ajovy and it helps immensely. my dysautonomia has been further diagnosed as POTS, after autonomic testing and consulting with two cardiologists and an electrophysiologist. it became very bad and completely unmanageable. after an admission and many appointments trying to correlate meds and treatments, we have iv fluids set up and its finally under control!

Currently, I have medical massages just about every week, along with chiropractic adjustments, to help with my pain and headaches, I am on several medications to help with my symptoms, I'm also doing iv treatments twice a week, and I still have lots of appointments in the future.

As of now, I still have fibro. I still have dysautonomia. I still have headaches, fatigue, pain, morning stiffness, sensitivity to light, chest pain, dizziness, tachycardia, low blood pressure, and hair loss. The only thing that has changed is the hope I have. When we didn’t know what was going on, I had no hope for ever getting better. Now I have hope in my team of doctors. It has been a whirlwind and I’m still not sure how I went from completely healthy to spending more time at the hospital than at home. Through it all, God has always been by my side and has brought so much peace into this situation. My story is very personal (obviously) and now that I am on the other side of the whole diagnosis thing (hopefully) I wanted to share it! My Instagram has most of this on it but all split up, so this is all of it put together. Thank you for tuning into this long post! Much love! 🖤