I cannot believe it has already been an entire year! I have been staring at this blank screen all day long, not knowing where to begin because so much has changed since this day a year ago sitting at Swedish Cherry Hill.
I did some counting looking back at this year and here are some stats I have come up with:
Surgeries: 2.5 (counting my small rhizotomy procedure)
Days at the hospital: 9
MRIs: 5, about to be 6
Massage Therapy appts: 19
Physical Therapy appts: 64
Before my diagnosis, I had never had an MRI before let alone a surgery or hospital stay. It was crazy how things flipped around so so quickly.
On that rainy Monday in 2016, I had no idea how much this diagnosis and surgery(ies) would change my life. I didn't even realize that Chiari was a chronic condition until I became one of the 20% of people who don't get better/becomes worse after surgery. I remember my mom just dropping me off back at my dorm after a full day of meeting 3 different specialist and getting 7 viles of blood drawn and just carrying on with my day, going to Terpsichore Landing showings that night and still dancing, even though my vision would go black. I was optimistic and I persevered through the rest of my semester to finish and went straight into surgery after finals week. The pain was unbearable, and I thought it would never end.
After my first surgery, I actually did get better. I felt good and went back to school just 4 months post op. I was strong, but got worse very quickly. I tried to push through it because I thought it was "all in my head," but MRIs showed it actually was. "We have to keep watching to see if the syrinx goes away," they said. It didn't. It grew. All the way down my spinal cord. There I am, less than a year since being diagnosed, under the knife once again having a surgery done that hasn't been done in 10-15 years. They said I was that bad. I believe it.
That surgery combined with the rhizotomy procedure (nerve burning for pain control), I am feeling relief. I still have an abundance of symptoms that aren't really "symptoms." My doctor says that some of the neurological problems should get better within the next 6 weeks, but that depending what my MRI shows, that might be my new normal. That is my reality.
Even though this year has been an INSANE rollercoaster and so much has changed, I have learned so much about myself. I never knew how much persistence I held within me, and that has made me strong. I will never ever ever take my health for granted ever again, because all I want to do is have as much energy as I used to, not needing to worry about midday naps and resting times. One of my favorite mantras that I have always strived to live by is to enjoy the little things, the simple life, and if being diagnosed with a chronic illness doesn't force you down that route, I don't know what would. The quest for a cure continues, and as long as I live, Chiari awareness will NEVER stop. The Chiari community is very small, but very powerful. Here's to many more years ahead continuing to fight this battle. #conquerchiari
Tuesday, March 28, 2017
Tuesday, March 7, 2017
Changes and Realizations
Hello everyone. This post is a bit of a random one filled with many tidbits of information that have accumulated throughout the last month. Overall, my recovery has been great. I have my pain managed very nicely and I have not pushed myself too far. I'm already off of my muscle relaxers and am only taking oxy at night to help keep my pain low while I try to sleep. I still have a great amount of nausea, so I'm thinking that will not go away this time. That's okay, I'll figure out how to manage it eventually. So far ginger ale has been attached to my hip!
Being home has been so great. It's not my ideal thing to be out of school with no job at home, but I had no choice. Focusing on my health 100% has been just what I needed. Hanging out with my parents, my sister, and the animals is fab, especially my sister. She keeps me going and is my best friend. We goof off, watch YouTube videos, listen to Ed Sheeran, and pretty much just make the house loud. There is never a dull moment!
I was able to start physical therapy again and will be starting massage therapy again here soon. PT is my saving grace! I have so much fun there with the trainers and therapists and obviously leave feeling much better. I feel that knowing the muscles of your body that affect you makes the experience much more successful. I like knowing what each exercise does for me and how it works paired up with the therapists manual work. I will be in physical therapy for the long haul, so I'm glad I love going :)
A few weeks ago, I met up with another girl in my community who has Chiari. We told her to go see my surgeon to get checked out and to possibly get surgery to further her treatment. She is now having surgery next week and is excited! However, it has been a crazy few weeks for Swedish's Neuroscience Institute (SNI). If you haven't already seen this, The Seattle Times is currently investigating SNI for having a high number of surgeries and quality of patient care, specifically investigating Dr. Delashaw due to complaints from patients and other health care workers within SNI. I will leave a link to the articles below from the Seattle Times if you want all of the details that I'm not going to go into on my blog. However, due to this investigation, my surgeon Dr. Delashaw has left Swedish leaving my case only six weeks post op with no doctor at the moment. Luckily today the nurse emailed me with the information about my new doctor which eases my nerves a bit, but that doesn't help the fact that the doctor I 100% trusted and has helped me in so many ways is no longer there. It's definitely hard and obviously not the ideal situation, but I will always trust Swedish's Neuroscience Institute. I have had nothing but great care and successful surgeries that I know in my heart I truly needed. I am now going to send a letter to the editor of The Seattle Times in hopes that it is published for all of the hundreds of patients like me. The people who have received great care and whom he has saved because even though I am not dancing, he did save me. He gave me back my quality of life and I am forever grateful.
So that wraps this random blog up. I am getting stronger every day and even though I am not at school or dancing, I have now accepted this path that I am on. Took me long enough.. but I am 95% sure I know what my next step in this world is. I don't want to share until I'm 100% sure, but I don't think that will be much longer. Thank you for everyone's never ending support! #conquerchiari
The Seattle Times - SNI Investigation
Being home has been so great. It's not my ideal thing to be out of school with no job at home, but I had no choice. Focusing on my health 100% has been just what I needed. Hanging out with my parents, my sister, and the animals is fab, especially my sister. She keeps me going and is my best friend. We goof off, watch YouTube videos, listen to Ed Sheeran, and pretty much just make the house loud. There is never a dull moment!
I was able to start physical therapy again and will be starting massage therapy again here soon. PT is my saving grace! I have so much fun there with the trainers and therapists and obviously leave feeling much better. I feel that knowing the muscles of your body that affect you makes the experience much more successful. I like knowing what each exercise does for me and how it works paired up with the therapists manual work. I will be in physical therapy for the long haul, so I'm glad I love going :)
A few weeks ago, I met up with another girl in my community who has Chiari. We told her to go see my surgeon to get checked out and to possibly get surgery to further her treatment. She is now having surgery next week and is excited! However, it has been a crazy few weeks for Swedish's Neuroscience Institute (SNI). If you haven't already seen this, The Seattle Times is currently investigating SNI for having a high number of surgeries and quality of patient care, specifically investigating Dr. Delashaw due to complaints from patients and other health care workers within SNI. I will leave a link to the articles below from the Seattle Times if you want all of the details that I'm not going to go into on my blog. However, due to this investigation, my surgeon Dr. Delashaw has left Swedish leaving my case only six weeks post op with no doctor at the moment. Luckily today the nurse emailed me with the information about my new doctor which eases my nerves a bit, but that doesn't help the fact that the doctor I 100% trusted and has helped me in so many ways is no longer there. It's definitely hard and obviously not the ideal situation, but I will always trust Swedish's Neuroscience Institute. I have had nothing but great care and successful surgeries that I know in my heart I truly needed. I am now going to send a letter to the editor of The Seattle Times in hopes that it is published for all of the hundreds of patients like me. The people who have received great care and whom he has saved because even though I am not dancing, he did save me. He gave me back my quality of life and I am forever grateful.
So that wraps this random blog up. I am getting stronger every day and even though I am not at school or dancing, I have now accepted this path that I am on. Took me long enough.. but I am 95% sure I know what my next step in this world is. I don't want to share until I'm 100% sure, but I don't think that will be much longer. Thank you for everyone's never ending support! #conquerchiari
The Seattle Times - SNI Investigation
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