Wednesday, September 11, 2019

September 2019: Health Update

I don't think I've spoken about this on my blog because it doesn't really relate to FTSED. However, I thought I should share some news.

These last two years have been pretty tough on me physically. To make things short, in May of 2017 I started experiencing painful symptoms and found out I had miscarried. Yet the pain continued to progress....which correlates to what's going on now (posted much further below).

This previous summer I had my gallbladder removed, and due to all the medical tests leading up to it (that I haven't been able to do thanks to not having insurance foreverrrr) I found out I am dealing with a slew of several things.

First of all, since I had open heart surgery as a child, they had to do an ultrasound to make sure it's doing okay before I undergo surgery. They basically told me that I need to majorly improve my health or it won't be too long until my heart needs a stint or some type of work. They didn't say anything in particular was wrong but that this is something I needed to work on based on my overall health and the several things affecting me.

To make matters worse I showed up as anemic. And during surgery I was having troubles breathing....came to find out I have sleep apnea.

Then in late June I went to a physician to check out my reproductive health since all of this physical pain I've been in since 2017 finally got so out of control it got in the way of me being able to do anything. I stilled showed as anemic, and after doing a couple more tests and an ultra sound, turns out I had 2 large masses in my uterus. Due to my history, health, age, and ethnicity, that I am high risk for ovarian cancer. They needed to perform a biopsy. Well this took forever to get done because I had to switch providers and clinics, etc. So in July I was in so much pain that I begged for something to help lessen my symptoms. Was put on a different dosage of birth control, but it only lessened one of the symptoms, but for the most part I was still suffering, and started to experience vertigo. Then they started me on a different type of hormone drug that provided more progesterone and I cannot express how much my behavior/personality has changed. Although it's helped shave off 3 days out of the month I'm not going through this craziness.

Fast forward to September/now, I was finally able to get the biopsy this week. I will hear back soon as to whether anything is cancerous. The hysterectomy surgery is already in the books for late November. Still have some tests to do before then, but looking forward to not being in physical pain anymore. For now, I can only hope that whatever is happening isn't anything worse. Will update when I can.

All-in-all it's been extremely stressful and emotionally exhausting. I won't go into detail here, but just happy things are getting done and this will soon all be over with. That's all I've got for now. I'm holding onto as much hope as I can.

- Katie

Monday, August 26, 2019

New Beginnings...

I've been doing a great job of keeping my blog going this year. More so than other years. However, recently I was hired by the University of Denver Newman Performing Arts Center in Music Education Outreach and Engagement and excited to dive into my work there. In other words, I'll be pretty busy and not sure how much upkeep I'll be doing from here on out, unless there's a holiday break (I'll write then). I love my job so far and I'm just as passionate about it as I am about my focal embouchure dystonia blog. Thank you to those who have been following! I am still doing a lot of writing in progress for other publications, and will write more about that soon. I also have been working extremely hard to fit in all my spare time on exercise and my health (thus one of the pictures is of red rocks where I hike and climb stairs). I've been dealing with some pretty difficult medical setbacks and it's been a crazy summer filled with hospital visits, appointments, trying to find the right insurance provider, and affording it all. Hopefully I'll be back here on the blog soon. Until then, I hope everyone has a great start to their (academic) year!

Wednesday, August 21, 2019

Standing with the Great or the Broken

Musicians' Health Collective: Chelsea Shanoff on Brain Tumor Diagnosis, Healing, and Reflection (Part 2)

Part 2 from Musicians' Health Collective Website.

I'm a huge fanatic. <3 What a great interview with saxophonist Chelsea Shanoff, and what bravery for her to speak about her surgery and loss of hearing afterwards. Completely support her and hope her recovery goes smoothly. I'm so glad she also addressed the need to be open:

"Recently there has been more awareness surrounding musicians’ hearing health and the shocking number of musicians who have some kind of hearing loss, whether from the hazards of being a musician or from something unrelated, like illness. (Side-note: Did you know saxophonist Chris Potter has SSD from a condition called Meniere’s Disease?)

I think it is great to talk about musicians’ health in a broad sense, but until we actually are able to talk honestly about the specifics of our own struggles, we still have a ways to go in educating others. Recovery from any kind of brain injury or surgery will look different for everyone, but in the case of my condition it involves the brain adapting and habituating to the loss of the balance and hearing nerve on one side." 

Tuesday, August 20, 2019

Musicians' Health Collective: Chelsea Shanoff on Brain Tumor Diagnosis, Healing, and Reflection (Part 1)

From Musicians' Health Collective Website (Part 1): Chelsea talks about her jaw problems while playing her instrument and the eventual findings of a tumor causing it...

Why it's important to get diagnosed!! I know sometimes it takes forever to find the correct specialist and diagnosis, but at least get the big stuff out the way; MRI scans, blood work, nerve conduction tests, etc. Ruling out anything more severe is the best thing you can do. Nothing wrong with precaution when experiencing any abnormal symptoms. 👨‍⚕️🔍💙

Sunday, August 4, 2019

Musicians' Well: Kristin Davidson on Dystonia: Another Kind of Recovery

From Musicians' Well website: Horn player Kristin Davidson shares details on her journey coping with Focal Embouchure Dystonia. Thank you Kristin for speaking out about your life, family, and love for music!

"...After injury you will become a completely different player....I would add that it is also true that in order to sustain yourself, you have to become a different person entirely."

Wow. That statement hits close to home. Can't tell you how deeply this type of setback changes a person. What I would give to be the former me - not just as a player, but as a person too. 💔

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

What a great read over Task-Specific Lingual Dystonia!!!

Note: I can't help but say, "Of course Focal Task-Specific Dystonia is associated with doubt about it!"

Clinical and Phenomenological Characteristics of Patients with Task-Specific Lingual Dystonia: Possible Association with Occupation by Kazuya Yoshida

Wednesday, July 31, 2019

Chiropractic Work: Neck Traction

Following up on my previous post about the chiropractic work being done on my neck. In the last post I mentioned how I purchased a years worth of chiropractic sessions.

A few months ago my chiropractor said my upper spine/neck needed additional support outside of the sessions; not just stretching the spine manually, but mechanically too. The spine in my neck is too compressed (including my jaw) and they don't know why. He said I needed to buy a cervical neck traction device. Reminding you I've had severe neck problems since a teenager.

I ended up buying the inflatable device (very effective and only 17 bucks) rather than the "craddle-sling" you see most people use. I also bought a professional back massager device as well.

Anyways, the point of traction is to pull the head up and away from the neck, stretching the muscles and ligaments around the vertebrae of the spine and expanding the space between the vertebrae. This gives the muscles the opportunity to relax and for pinched nerves to release further.

At first I thought, "This is like a neck pillow you buy for traveling. How is it different? And will it even make that big of a difference?"

I can't even begin to explain how much it has helped me! It's completely resolved my jaw compression on the right side and I no longer experience spasms at rest or accidentally biting my tongue. I also breath better when I sleep because my neck and shoulder muscles are completely relaxed.

After I had my gallbladder surgery I didn't use it for a couple weeks and I immediately started to feel my neck muscles starting to pinch and pull deep down.

Nothing makes you realize how much pressure gravity puts on your body than after experiencing chiropractic work. I keep thinking, "How have I survived without this?"

The only other time I felt this much relief was when I had 10 botox injections in my cervical muscles when 14 years old to release a severely pinched nerve that they weren't sure was cervical dystonia due to similar symptoms.

I know chiropractic work isn't for everyone, but I just needed to keep up-to-date with what has been helping me. This in return has helped me with my playing as well!!! I feel way less restricted due to my jaw moving more freely. 📯🎶