Welcome, why don’t you stay a while…

Good news. I got good news. I feel like all I’ve written about lately is bad news. Honestly, getting good news is jarring after all this time.. Since January, I decided I needed to get healthier. Let me clarify, I needed to fix chronic medical issues so I could heal before trying to get healthy. I started with my bursitis and tendonitis ridden shoulder first because it was preventing me from doing daily living skills and sleeping. Took almost two months, but the treatment finally kicked in and my pain is gone! Yay! Then my therapist began taking on clients again after a serious case of COVID19. I was literally drowning in sadness without regular therapy. Finding an outlet for talk therapy has been invaluable to keeping myself above water. Depression has been a part of my life for a long time, but the lows have been low. There are days when I grief breaks me down so far, it’s hard to get up, but I keep trying to do better.

Finally, I started treatment to resolve my Benign Paroxysmal Positional Vertigo (BPPV). The results of this therapy has been life changing in a good way. I got an appointment at a Balance and Dizziness center with a physical therapist. The evaluation to determine if I indeed had BPPV was intense, uncomfortable, and even a bit freaky. I was placed on a table and had my eyes covered with black-out goggles that had cameras inside to watch my eye movement. The idea is that my eyes will react when the vertigo begins when my body is placed in various positions. BPPV is a condition in which crystals that are supposed to reside in your otolith organs to help you maintain gravity and balance break loose. The crystals then float around the the semicircular canals in your ear, thus causing you to become dizzy when your head turns in certain positions. My stint with vertigo ranged from mild dizziness to being unable to stand and vomiting anytime I attempted to lift my head. It’s been a bit of a major inconvenience (sarcasm intended).

During the test, I found out that I had crystals loose in both ears. My right side was much more severe, but my left side reaction was pretty shocking. They wanted to do the Epley Maneuver 3 times to “get the best results”. On the second pass, a bit of light got into my goggles and I was able to see the reflection of my nystagmus. A nystagmus is a rapid and uncontrollable movement of the eyes. I wasn’t sure what I was seeing at first, so I asked, “Do I have a nystagmus?”, to which the medical intern who was observing stated, “Uh, you have an intense nystagmus.” It was such a bizarre feeling to realize my eyes were rapidly moving and I couldn’t control it. It lasted almost 2 minutes (which I am told was and not only intense but a “violent” reaction). I have the empathy for people who live with this condition. It was a shocking feeling. After the test, I felt okay. I had to avoid sleeping on my right side for a few days (which was not easy)….and guess what? The horrible experience was well worth it. I attended two more balance sessions and had no issue with maintaining my balance. My only issue came from having to stand for long periods of time. I went in with a normal sized ankle and left with one that resembled a pale elephant. After my second session, I was dismissed because my vertigo had resolved and the therapy was not helping my ankle.

How cool is it that a therapy I tried actually worked…and worked quickly??? It’s truly changed my life. I now sleep through the night. I don’t feel like I am falling out of bed whenever I move. I can rinse my hair in the shower, grab items off of a high shelf. I can look up at a wall clock and bend down to pick up my shoes. It’s amazing how much I adapted my behavior and movements to accommodate my vertigo. I’m a new woman! Ok….realistically, I’m a slightly improved woman, but it’s a step in the right direction.

I hope I am on a roll!

Photo Credit: Jernej Furman

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

One thought on “Welcome, why don’t you stay a while…

  1. The first time I had my “crystals adjusted” i left the therapy room and I could no walk. I had been compensating for so long that the room was spinning and collapsed. Turned out my crystals were back in place, but my brain was not. like you report it was life changing.

    Congratulation on the big improvement. It is life changing and while you may need to update the adjustment (at first I had to go about 2x a year). I have been amazed.

    Thank you for the update. I am so happy for you

    Like

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