Welcome back everyone and Happy Chiari Awareness Month! I cannot believe I left this blog untouched for THREE years.. & yes, there’s a ton of explanation that goes along with that. In this post, I’ll just update you all on how my symptoms are and what I’m doing to treat my Chiari and Syringomyelia, and then of course how important the month of September is to me.
The past three years have gone pretty quickly for me to be honest. I’m officially listed as STABLE for Chiari and Syringomyelia which I am incredibly grateful for!! In 2018 I spent a lot of my time at the Swedish Pain Clinic seeing a bunch of different specialists and I truly believe that is what jumpstarted me into being able to have a higher quality of life. I’ve had several rhizotomy procedures in my lumbar and cervical spine and some steroid injections in my cervical spine as well. In 2018 I also started seeing a neurologist every 3 months to track my symptoms and find a good balance of medications and as of February of 2020, I feel pretty darn good by saying I think we have found the perfect balance. One of the best things that has happened in the last few years was the introduction of the medication injections Aimovig and/or Emgality. They are for people who suffer with chronic migraines (which is how my neurologist treats me since Chiari has no cure) and it supposed to block certain nerve receptors and give the patient less migraines a month. I’m please to say it actually helps me! Not as much as it would with someone who only suffers from migraines, but I do have a higher number of better days for sure. I’m on Emgality now because unfortunately Aimovig was killing my hair and making it brittle.
As for symptoms, I basically have them all still… daily headache (although not as severe), numbness, tingling, blurred vision, trouble swallowing, bladder control issues, dizziness, tinnitus, nausea, extreme fatigue, hoarse voice on occasion, memory problems, photophobia, balance issues, depression/anxiety, heart palpitations, and neck pain of course. I probably didn’t even get them all. Thank goodness they all don’t happen all on the same day like they used to! I’ve become very good at being prepared for anything to happen at any time. I always have all of my medications on me, extra water, snacks, instant heat and ice packs, all the things. You just have to be on alert with everything. When COVID-19 came around, I was terrified, heck I still am. My immune system SUCKS no matter how much Vitamin C I take I swear. My germaphobe/OCD self just became even worse … But if I’ve learned anything in the past 4 years of having Chiari, I can’t be afraid of every single thing, or else I won’t feel fulfilled. Next week I get to go back into the studio with my dancers and while I’m scared for my health, my mental health is going to be so much better being around them. It’s been a good 5-6ish months actually focusing on myself and my needs, but I’m BEYOND ready to have much needed conversations, create, move, and inspire again!! I’m feeling good, tired, in pain, but good, and I couldn’t say that 3 years ago.
As for the month of September … as I mentioned briefly above, Chiari cannot be cured. There are very few specialist and I’m just thankful that the doctors at Swedish Medical Center are knowledgeable about it! Chiari Awareness Month is SO important to fundraise and to help the people around us know and learn about the rare disorder. It is relentless. It doesn’t care how old you are. It doesn’t care how successful you are. You can be stable one MRI and not be stable the next .. and we need more research. Doctors don’t even know how and why people get it, they just have theories. It’s about time we figure this out.
Hopefully I become better at posting here! I know a lot of people were following my previous blog, and I want my personal experience out there so other Chiarians have someone to relate to. I didn’t have that when I was going through my diagnosis and surgeries. If you are reading this and you have Chiari and want to reach out, PLEASE DO!! I have all of my old posts from 2016-2017 posted below from my old blog. Check them out. I want to keep everything on here real and raw, which also means my train of thought probably won’t be very direct! (Think Dory from Finding Nemo…). Anyways, thank you all fro reading this far if you have. Much love! XOXO
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