It’s always one thing or another….

I live in the North Eastern part of the United States and we have had non-stop snow over the past three days. Day one, I did some laundry, sorted some items, and filled a few bags to toss out. After the weekend, I found out I had a traditional “snow day” on Monday, and I didn’t have to go to work. In the days of virtual learning a traditional snow day is a treasured event. Last year we had no snow, so this was a fun surprise! I fully expected to have a virtual work day, so I was excited to have an unexpected day off. I thought I would get so much done on my first snow day, but I woke up with vertigo. Minor bed spins. This is not new, I was diagnosed with benign paroxysmal positional vertigo (BPPV) a few years ago. What is BPPV? Well, according to the Mayo Clinic: “Benign paroxysmal positional vertigo (BPPV) is one of the most common causes of vertigo — the sudden sensation that you’re spinning or that the inside of your head is spinning. BPPV causes brief episodes of mild to intense dizziness. It is usually triggered by specific changes in your head’s position.” In my case, the likely cause is that crystals from my inner ear dislodge and cause dizziness as they float around. The Epley maneuver helps to get the crystals back into the inner ear and I go on as I did before….without the world spinning. The maneuver is easy enough to do, but when you trigger the dizziness, it can be so intense. Often getting through those seconds seems like a real accomplishment. I had planned to do a lot on this snow day, but often after a dizzy spell, I need to take it easy. I watched TV and lazed around. After such a tumultuous few months, I needed a lazy day and I enjoyed it.

Bouts with vertigo started for me after a car accident in 2016. I was in physical therapy for my whiplash injury to my neck and while doing an exercise, I almost fell over. Years later, I was doing physical therapy for my hips and I experienced it again when doing work on the table. Most of the time, my experiences are mild. An ENT taught me something called the Epley maneuver and it seems to help get the spins under control.

Fast forward to snow day 2 (yay, 2 days off!). I woke up with nasty bed spins. Not mild like the day before, rather, this was massive bed spins. I had a hard time sitting up in bed and felt nauseous. I did the Epley maneuver, but often times when the spins are this bad, it takes multiple attempts to get any positive results. After multiple maneuvers, I got the spins to stop; however, the rest of my day included loss of balance, nausea, and a headache. My BPPV typically occurs when I wake up and move my head. It tends to throw off my entire day. I had so much I wanted to do on snow day 2, but opted to not fall and break myself or puke more and I stayed on my sofa. I’m so thankful that my neighbor shoveled for me. All I had to do was clean the snow off of my car and let my dog in and out. It wasn’t pretty and I had to hold on to solid items at times, but I did it without falling and puking. Yay for me!

I’ve been to ENTs and a neurologist for this issue. I did have an episode about a year ago where I collapsed and was unable to move for 4 hours or so. I puked all over myself and prayed I wasn’t having a stroke. It was awful. Since then, I have had only mild episodes. The issue with BPPV is it is not a constant issue (thankfully), so it is hard to determine a cause. When it happens, it tends to stick with me for a few days. There are times when I feel like I have some sinus pressure and my ears ache a tiny bit. So for the longest time, I attributed the vertigo to sinus/ear infections. Ironically, I was diagnosed with vestibular migraines a few months ago by an ENT. He sent me to a neurologist who quickly claimed I didn’t have vestibular migraines and did indeed have BPPV. As a rheumatology patient who has had diagnoses change multiple times, I wasn’t too bothered. I didn’t particularly want migraines on my chronic illness resume. The neurologist recommended if it continued to happen that I should explore the balance center at a well-known city hospital. I put it off because it is just one more thing I would have to do. Today, I looked up the phone number. Tomorrow I will call and try to get an appointment and hopefully learn how to better manage these events.

I did have some good news in the past week. I finally had a MRI found out that I don’t have a tear in my shoulder/rotator cuff as suspected. Instead, I have pretty severe case of bursitis and tendonitis and am going get an ultrasound guided steroid injection to treat it. If that doesn’t work, I’ll try a stem cell treatment. Finally, I got some good news!! No surgery!! I never get good news when it comes to my body. Today my shoulder was feeling pretty good and my RA was fairly under control. I could have accomplished a lot of cleaning and other chores that I desperately need to catch up on….but I didn’t because of vertigo. It’s like my body can’t handle being normal and it always has to throw a curve ball my way to remind me that I live the chronic life. It’s exhausting, disheartening, and just plain unfair. I always have one more thing to deal with regarding my health. I feel like a hypochondriac even when I know I am not. I’m just not a healthy person. I live with disability and chronic illness. I do my best to make the most of things, but overall, it’s hard to find those silver linings. Today, I feel sorry for myself. Tomorrow, I’ll move forward because this is my life. I know I am not alone in living a chronic life. Sometimes putting my issues out into the universe via this blog helps me reach out to someone who just gets it. We all need that at times.

At the end of the day, I don’t feel as terrible as I did this morning, but I don’t feel great. I’ll take some anti vertigo medication before going to bed so I can work tomorrow (2 hour delay!!) My days didn’t go the way I wanted them to, but the puppy enjoyed the snow. So I’ll call it a day, and hope for a better tomorrow.

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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.

2 thoughts on “It’s always one thing or another….

  1. Oh man I have BPPV as well and I hate it. I know what you mean about it showing up in unexpected times and wham it just tackles me. The good thing, tell people you are realigning your crystals – others will wonder what you are really up to, and those that don’t wonder should explain what they did in the 1970’s

    Liked by 1 person

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