Working and Living with Ramsay Hunt Syndrome
Joshua Tree backroads

I just read my last blog and cried again. I miss my grandma, plain and simple.

Life has moved forward. I came back to LA on New Year’s eve, actually flying over the city as it struck midnight. The city lights combined with fireworks, (including siren lights); was a twinkling, colorful display of celebration and I smiled.

Well, let’s just say I was Happy to be home. Remember when I said life was handing me lemons, well I think 2018 wanted to go with a big massive BANG!!

My flight from Canton to Chicago is a short flight, it feels like as soon as you hit the cloud bank you are descending again. This time however, I had the ultimate pleasure of sitting next to a guy that was flying to Idaho to propose to his girlfriend…I found this out as I handed him multiple vomit bags, napkins and an Altoid (supplied by fellow flyer).

That didn’t top it off, I had vertigo again, this time to the point that made me get up to go to the bathroom. Finally Landing, a slight wait for the bus ride, made it my car, then my home and well woke the next morning with the flu. :/

Nearly empty Chicago Terminal New Years Eve 2018.

Nearly empty Chicago Terminal New Years Eve 2018.

Working and Living with Ramsay Hunt

Having RHS, my immune system is crap. This time it knocked me out for a week, so starting work again, got off to a late start.

Since being diagnosed, the issues that are affecting me

  • Vertigo

  • Nausea

  • Double Vision (even as I type this I’m having issues)

  • Occasional sharp ear pain (in and behind)

  • Occasional twinges of pain of the affected side

I know I’m fairly lucky, my symptoms and issues are minimal in comparison to others, unfortunately it would make it unsafe to drive after working for 8 hours and LA doesn’t have the best mass transit system. Thankfully I work for a pretty amazing company and I am able to work from home as I recover. This has been a massive relief.

My knee is now over 138 days old and doing wonderfully!! I still need to strengthen my quads (and to be honest… core). Work provides two 15 minute breaks and I take a 30 min lunch.

Today, I decided I need to use those 15 mins breaks and lunch, not only to walk my dogs but make sure I’m walking as much as I can.

Multiple doctors, multiple questions about RHS

Since being diagnosed, I have met with an ER doc, my general doc, and ENT specialist, and completed a head and neck MRI with contrast.

Tuesday I met with the neurologist and we had a long conversation about my progress, whether or not Botox would help with the upper eye droop. She reviewed the MRI with me and explained that the inflammation they are seeing is normal. She also explained that nerves have an outer “sleeve” called a epineurium and mine is damaged which impacted the nerves in my face. She then explained that nerves repair 1-2mm a day. Considering there are nearly 45 miles of nerves in the human body….it’s gonna take some time!! (God I hope some math wiz reads this and can estimate the time it might take!!)

People keep telling me my face looks better, but I see the photos, ( my face “looks” flat!! ) I notice the sag and I feel it. If there is a change it is soooo small, it’s insignificant. I have one more acupuncture appointment to schedule and plan on getting that done soon.

For Christmas I was given a massage coupon and will use it specifically for my face. Massage is supposed to help and I try and do it everyday to myself, but being able to close my eyes and have someone else do it...perfecto!!!!

I will continue to try and teach my face to work again. There are some days I forget, I get so wrapped up in what I’m doing, then I smile and my heart sinks...I’m now finding that I cover my mouth when I smile or laugh if not people stare. I don’t think it’s intentional but it can be a bit of a shock I think when they see me smile or laugh and notice half my face doesnt move.

Joshua Tree

Not letting life get in the way.

We all go through it but I’m determined not to let all of “this” sidetrack or derail me. I will continue to plan and purchase an RV or a trailer so I can begin taking some weekend adventures. At this time it looks to be June/July that I will have the rig.

I’ve purchased my first “big” map of the US and some erasable highlighters so I can begin to map out routes and places to explore.

Where would you go?

my photographic journey