about my Ramsay Hunt Syndrome

I've been unsure how much to share about my Ramsay Hunt Syndrome on my blog because I like to keep this an uplifting space, but my current reality isn't all that uplifting. It's quite scary and sometimes depressing. I have been sharing quite a bit of my daily progress publicly on my Facebook account which means friends and followers alike can see how I'm progressing. If you want to see more frequent updates, then I invite you to follow along with me there.

There are days when my condition is devastatingly heartbreaking and days when my spirits are good. It's unpredictable at the moment. It's all so new to me. I've gotten so many supportive emails from blog readers and sewing friends. People have been asking about how I'm feeling, so I'm going to go ahead and share a little bit here about my progress and prognosis.

If you have trouble playing any of the videos on the blog, you can visit them directly at my Ramsay Hunt Sydney Youtube playlist.  I will warn readers that some of these updates and videos can be quite confronting. If you are squeamish, maybe skip to Day 5. It gets better at Day 5.

Day 1: I've lumped the afternoon that my condition occurred and the next morning with my diagnosis together as a single day as thankfully that happened within a 24 hour period. I blogged it a few days ago, but essentially I had a terrible (and incidental) sneeze followed by what I thought was a dislocated jaw. Fortunately I got terrific medical care and was quickly diagnosed with Ramsay Hunt Syndrome Type 2, a variant of shingles caused by the same virus as chicken pox. It affects the facial nerves, so those affected with it have facial palsy including difficulty moving their jaw, eye and swallowing. Severe ear pain is quite common. Some patients also have dizziness and vertigo. I am very fortunate that doctors were able to diagnose me within 24 hours of my conditions showing which means my prognosis is very good. 70% of patients diagnosed and properly treated within three days of onset make a full recovery. That recovery takes time though - it can happen as quickly as three weeks, but for some people it takes a year or two.

I cannot overstate how lucky I am to have seen good doctors. Most doctors will never see a case of Ramsay Hunt Syndrome in their medical career. That means it can easily go undiagnosed or misdiagnosed for an extended period making it much worse. I am so thankful for the care that I received.

It isn't a flattering photo at all. It's more like a mugshot isn't it? But this is how I looked within minutes of the condition occurring. I took a webcam shot because I was talking to friends overseas at the time. My mouth gaped open to the side and my lip puckered outward. I knew something was devastatingly wrong. Craig immediately got on the train home to get me and I managed to brush my hair as I waited for him. I realize now that was such a vain act. Brushing my hair and taking a better photo... I had much bigger things to worry about.

I am fortunate compared to others with the syndrome, my symptoms are somewhat 'mild'.  The virus did not have time to devastate my nerves because it was diagnosed early. That's not to trivialize what is happening to me. My left eye doesn't fully close. I had some dizziness and vertigo on day 1, but it wasn't debilitating. The biggest concern of Day 1 was my inability to move my jaw correctly. I could barely speak. Eating and drinking were both challenging and avoided. More than anything, I felt afraid.

Day 2: WARNING DAY 2 IS VERY CONFRONTING AND SAD. I'd like to say that I have been on a constant upward trajectory in my healing, but that certainly wasn't the case. Day 2 was devastating. It was then that I realized how severely I'd been impacted. I had to send a flurry of letters on day 2 to people I'd made commitments to. I began the process of postponing projects. One opportunity that had recently come up for me was presenting a webinar. It was painfully obvious that wouldn't be happening anytime in the near future. I could barely speak.

It did give me an idea though. I decided that I needed to make videos that showed the state of my condition daily and document my improvements. I was fairly certain that seeing improvements, no matter how tiny, would keep me motivated. Also many of my family and friends are overseas and I'm not interested or energetic enough for visitors, so the videos allow people to see what the condition was doing to me and answered questions they might be having. At first I was only going to keep them private - a vanity issue, strange as I'm rarely vain - but I decided to make them public as a means of informing people about RHS.  (Frankly, that's speaks volumes about my personality. Even when I'm sick, I'm interested in teaching and sharing.)

The first video is gut wrenching. Those who have met me in person know that I'm an articulate, fast-speaking person with a thick midwestern twang; on Day 2 though I could barely speak.



Day 3: Day 3 came with a lot of hope. My condition appeared to be improving, although I did have severe ear pain that was paralyzing at times. My spirits were much higher. I thought I'd lick this thing quickly. I spent a lot of time finding an online support network for Ramsay Hunt Syndrome patients. I was offered both physical and emotional support from so many friends on Facebook. Things were looking up. I even managed a line or two of hand-quilting that day. Obviously things were still bad, but I had both hope and energy.


Day 4: Things hit the skids again on Day 4. I woke up with severe chest pain and tingling in my left arm. This lasted hours. My left arm was weak making simple tasks like typing nearly impossible. Quilting was out of the question. Moving at all was a challenge. We debated a run to the emergency room. We called my diagnosing doctors and waited it out. In contrast to Day 3, I spent most of Day 4 laying down and moving as little as possible. The pain was level and constant through the day and my spirit broke again.



Day 5: When I woke up on Day 5, today, I felt much the same as Day 4. My left arm is still on pins and needles, my chest hurts a bit and my ear pain has returned in full force. I thought it would be another day in bed. As I'm typing this, my vision seems to have gotten worse and the right side of my face has numbness which worries me as it is my non-affected side. Forget all of that though because as it turns out, I now truly understand unfettered joy. If you only watch one of these videos, this is the one to watch.



I don't want this blog to be a sad place or become one just about disease or struggle. I want to show you my progress and my plans. I want to show you the quilts that I'm working and the ideas that I have, but that's going to take time. Be patient and stick with me please. I am bouncing back and forth between having energy and feeling the weight of sheer exhaustion.

Because so many people have asked, I wanted to share this update. I won't be posting them often to the blog, but those who are interested can follow along at Facebook or at Youtube.

I truly hope that each of you are doing much better than I am this holiday season. I wish you all so much joy and happiness and celebration. And if your days aren't the brightest right now, maybe try to sing for a bit. It's working wonders for me.

happy holidays and best wishes.
amy