I’ve been struggling with an idea for a while, and every time I think about writing it down, I chicken out. Not because it would be hard to do (which it would be), but because it would be difficult to acknowledge something about myself. Anyone who knows me is aware that I am generally a smart and thoughtful person. I’m smart, witty and a bit of a know-it-all, especially about animals. I love to read and find more information about the things that interest me, as I view learning as an ongoing process. As I say regularly to the students I work with: “In science, there is no such thing as I don’t know. It is just another opportunity to learn.”

But, in this story of mine that happened earlier in 2017, I was not smart. I avoided something that shouldn’t have been avoided. I pretended to be ok when I wasn’t. I didn’t ask questions because I didn’t want to seem stupid. And I didn’t ask for help when I needed it, and potentially could have saved myself from the genuinely most painful experience of my life.

Side note – Before I start, I decided to finally write this for two reasons:
1) There was a death in the family recently. My uncle was a great and kind man, who will be greatly missed. He went through so much in his life that could have beaten him down and made him give up, but he never did. He was always a great source of comfort, and remembering him now gives me the courage to write this down.
2) I was on Twitter recently, and came across a tweet from a friend of mine that I haven’t spoken to for a while. She’s had a rough time of it and had to deal with some very difficult things in her life, and I’m proud to call her my friend. Seeing this tweet of hers, which was just a retweet of something she found interesting, reminded me of her and her strength to document a very difficult time in her life, and motivated me to do the same. She was not afraid. What happened to me was different, of course, but she inspired and continues to inspire me. Thank you, Erin.

It all started with a tingle.

A few months ago, I was sitting and watching TV with my brother on a Friday evening, when my left side under my armpit felt a little “off.” It didn’t hurt or was tender, but instead it felt as if I had lost some sensation there. Not only that, but the area extended slightly towards my back and front. It was as if approximately a two-inch wide area extending from under my armpit on my left side fell asleep. I thought it was peculiar but gave it no mind. After all, it only tingled.

The next day, the sensation was still there, but I was busy and I honestly didn’t even really notice it or think about it that much, since it didn’t hurt. That night, Daniel and I saw a movie (I don’t recall what) and I quickly noticed I kept leaning in my chair to my right side, as it had become slightly uncomfortable to put pressure on the left side. It was so gradual that I didn’t even consciously notice it until that point. So I naturally thought that the opposite had happened – that the area had gone from being less sensitive to increasingly so. I was actually a bit relieved, as I naturally thought “well, I hope that means it will get back to normal soon.”

After I got home from the movie, I took off my t-shirt and looked in the mirror to see what was going on, and I saw some red splotches on my back and under my arm. “Oh, it’s a rash!” I thought, relieved. So, I did what I normally do when I have a rash – took some Benadryl and figured it would disappear during the night. Following that, I went to bed … and slept on my right side.

The next morning, I woke up early because I was helping out my sister with a school event. I was making fluffy slime at a fundraiser from 11am-3pm, and I had to make sure I had all the ingredients ready to go before I drove to the school to set-up. When I was getting changed, I looked at the rash and it was still there, and had extended from under my armpit to towards my torso and back for around an inch or so, the same area where I had felt that “tingle” two days prior. I thought that I must have been in contact with something a few days ago that caused the sensation and led to a rash. Therefore, I took some additional Benadryl and went to the event.

As I arrived, the rash was hurting a bit from the movements you make while driving (turning, checking your blind spot, etc.) but I was determined to push through. I met up with my sister and got ready for the event, which was a huge success. The fluffy slime was immensely popular, and I hardly had a moment to think, much less worry about a rash, except for one brief moment.

My parents came by the event to visit and spend some time with their grandchildren, who were also helping out with the event, and I pulled my dad aside and asked him what to do about this rash that seemingly wasn’t responding to Benadryl. I trust my dad with this stuff, and he’s been extremely supportive and helpful with some of the health issues I’ve had in the past. My dad said that it could maybe be something, and that I should see my family doctor on Monday after work if it didn’t get any better. I agreed and proceeded with the event. Then my mom came up to me a short time later and asked me what is wrong, as I had just twisted awkwardly and grimaced in pain. I quickly explained to her the situation and she agreed with my dad. She then suggested that it could be something, but I dismissed it practically immediately, as it was a silly suggestion, and what I had couldn’t be that. After all, it was nothing more than a particularly troublesome rash. After the event, I took it easy the rest of the day and made a mental note to call my doctor Monday morning when I got to work.

On Monday morning, I was a complete and utter mess. The rash began to feel uncomfortably warm, hurt to touch, and would occasionally cause a burst of pain when my shirt rubbed against it or I leaned back too far in my chair at work. The area on my torso didn’t hurt, just the spot on my back, under my shoulder-blade. I had continued to take Benadryl, but it was evident it was not working, and I had to do something. So, since my office has no windows and no other people in it, I took my shirt off – which helped almost immediately. The pain didn’t go away, but was minimized, and I didn’t feel as uncomfortable. But, I called my doctor and made an appointment for 5pm that afternoon.

I took it easy at work the rest of the day and at one point even took a towel, wet it with cold water, and laid it on my back to mitigate the “warm” sensation I had on my back. And when I did have a meeting in the afternoon, I took some Tylenol, put my shirt back on, and toughed it out.

I left work and headed to the doctor’s office, hoping that he would be able to provide some relief. When I arrived and was called into the office, the nurse came in and asked what was wrong. I explained about my rash, and she asked if she could see it, so I took off my shirt and turned around. “I know exactly what is wrong,” she said, and then left the room, leaving me alone, puzzled and confused.

My doctor arrived shortly after with his usual and casual attitude. “I hear you have a nasty rash,” he said, to which I agreed and told him the story. “Let me see it please,” he said, and I obliged him. Within half-a-second, he told me to turn around and put my shirt back on. “Well, I’m sorry to say I know exactly what that is,” and said the exact diagnosis my mom predicted approximately 28 hours before:

Shingles.

I had heard of shingles before, mostly from the pictures in my doctor’s office, advising people over the age of 50 to get vaccinated against it. I had learned a few things about it over the years – namely that you can only get it if you have had chickenpox, as it is the same disease. According to my doctor, when you have chickenpox as a child and the symptoms disappear, the virus (varicella-zoster) doesn’t get eliminated from your system. It stays dormant in your nerve cells, typically in your spinal cord or the base of you skull, until it somehow gets “reactivated” and proceeds to your skin, where it turns into painful blisters. Typically, prior to the blisters appearing, slight tingling appears along a nerve line (or dermatome) – which is why it spread in a line from my back, under my left shoulder blade, all the way under my armpit and ending below my nipple on my torso on the Friday night. The blisters that give shingles its name are extremely painful, as it causes inflammation of nerve cells within the affected dermatome.

After my doctor explained this to me, he asked me how the pain was, and I said that it wasn’t too bad. It hurt, of course, but nothing too serious. I said that it was about a 6 on a scale to 10. “You’re lucky,” he said, “as some people get terrible pain that is practically debilitating.” He then told me to come back if the pain changed and became unmanageable.

He also prescribed some antivirals to help shorten the length of the illness, and advised me to start taking it “yesterday,” as the earlier you take it to the presentation of symptoms, the better.

As I went to the pharmacy to fill the prescription, I spoke to the pharmacist, who was surprised that someone as young as me would have shingles. I embarrassingly asked about what could be used to help with the pain. She advised some calamine lotion (like what you use for bug bites) that was put in the fridge to cool me down, and maybe some lidocaine spray. I bought some calamine lotion and headed home. On my way, I called my mom, and told her she was right – as mothers love that.

That afternoon, the shingles were uncomfortable and warm, but not too painful. As for the calamine lotion, it hurt when I applied it, and really did nothing other than add a bit of a cooling sensation.

That evening, I tried to sleep only on my right side, as I knew that if I would roll over in my sleep onto the blisters it would hurt and wake me up, which it did around an hour later. And that was when the pain really ramped up. It felt as though my skin was ripped apart by barbed wire from the inside. The pain was so intense, that I thought my skin was on fire, as it came in waves. It would surge and be incredibly painful, followed by an ebb, then a prickle of pain followed by another surge. It was reliably consistent and extraordinarily painful. I’ve dealt with a decent amount of pain in my life – dislocated shoulder, sprained ankles, cutting my thumb open with a bagel knife, broken toes, and more, and other than when I was a child, didn’t really cry or let it show too much. But, if I’m brutally honest , I almost lost it a couple of times that night. It was unrelenting pain that seemed to have no end. Even now, almost six months after it subsided, I still lack the words to properly describe how much it hurt.

I could not sleep the rest of the night because of the near-constant pain and killed time reading about shingles, its causes and possible treatments – anything to get my mind off the pain. During the night, I learned that individuals can get shingles almost anywhere, even on their face and close to their eyes (which could be especially damaging). Some people even get the blisters on more than one dermatome, and I could not imagine having that sort of pain emanating from two different areas on my body.

After spending a whole night wide awake from the pain and doing anything possible to keep my mind occupied, I called in sick on Tuesday morning and told my supervisor my diagnosis. She was very understanding and told me to take as much time as I needed to get better. I then immediately called my doctor to report about the pain, but could unfortunately not be seen until Wednesday afternoon. And then I called my parents, who are both scientifically and medically minded, to ask what I could do for the pain. They said, “it is nerve pain – so nothing.”

I somehow went to a pharmacy that morning in a haze of discomfort to inquire about what could be done, and the pharmacist said the same thing as my parents. And sadly, she said, anything stronger required a prescription. As I learned, normal drugs like Tylenol or Aspirin against the pain would be like shooting a BB gun at a freight train to slow it down.

I spent the next 24 hours in a daze of immense pain, as the blisters almost covered the entire dermatome, from beneath my left shoulder-blade to all the way around to just under my nipple. And no matter what I did, nothing worked to get the pain to dull for a second of relief. Calamine lotion hurt too much to put on, a cool bath only helped for as long as I was in the water, and lidocaine spray my mom picked up for me was less than useless (since the pain was in the nerves, a topical treatment for the skin wouldn’t have helped anyway). And Tuesday night was just as bad as the previous one, as I could not sleep for more than 20-30 minutes because of the pain, no matter how tired I was. I explained it to my brother like this – imagine that every couple of seconds, someone rasps your skin with a cheese grater while simultaneously stabbing you there with a pitchfork.

Wednesday was more pain and limited relaxation, but ended with me going to the doctor, where he prescribed an opioid medication to help with the pain. After words of warning from both my doctor and pharmacist, I took one of the pills and the pain did die down eventually for a few hours. With that medication, the pain transformed from a burning, radiating pain to an uncomfortable one that was on the verge of being tolerable.

That night, for the first time since Monday, I was able to sleep for a few hours.

I continued in constant pain the rest of the week, as shingles does not go down without a fight. Every couple of seconds there would be a new burst of pain spreading like wildfire from the shingles. And while the pain medication helped, it only took away some of the pain. It was still present, but began to slowly improve as the days went on.

With shingles, the blisters eventually scab over and heal, but that takes time. When I reached the end of the antivirals, the shingles were still present, but slowly scabbing over. The rest of the week continued as a blur of pain, pills that I could only take every 4 hours, and trying to find that perfect balance between unbearable pain and livable discomfort.

For the first time in my life, I could understand how people could get addicted to pain medication. There were times I contemplated taking more than the recommended dosage to make the slight relief last longer, as with the pain I experienced from shingles, I never wanted it to rear its head and scorch my nerves again. I never did, but I saw just how easy it could have been to try to numb it all away.

Eventually, it did get better, and once the blisters scabbed over and the pain wasn’t as bad, I was able to go back to work. I stopped using the pills, as it is not a good idea to use them for too long, but the pain was still there, just dulled. It still took a few weeks for everything to disappear, and there is still some discolouration and occasional discomfort where the blisters were, but I am lucky. Some people continue to suffer the nerve pain long after the blisters have healed.

You might be wondering if people who have shingles can get it again. It’s complicated, and from what I can tell, still not well understood. But there is a risk of shingles recurring in some people, as the virus is never truly leave your system. While it is unlikely that I will get it again, it could happen, which is a scary thought.

Here’s an interesting fact about shingles – you can only get it if you had chickenpox, like I did as a kid. If you’ve never had chicken pox, you can’t get shingles. Full stop.

From what I’ve learned, individuals who previously had chickenpox get a bit of resistance from contracting shingles if they encounter someone with chickenpox. But, with the invention of the chickenpox vaccine, fewer children are contracting chickenpox, which means less protection from shingles for people who did have chickenpox. Which means that there might potentially be an increase in shingles cases are this generation gets older, becomes higher risk, and don’t come into contact with people who have chickenpox.

Also, no one really knows what causes the chickenpox virus to reactivate in someone’s body to cause shingles, as it doesn’t happen in everyone.

What about if you got the chickenpox vaccine, can you still get shingles? From what I can tell … probably not. At least, according to my research.

Now, before everyone starts freaking out, there is a shingles vaccine. It is typically prescribed to people in their 50s or 60s (because they are at a higher risk) to reduce their chance of contracting it, as well as reducing the severity of shingles if they are unlucky enough to get it. But since I was not in a high risk category, it never even entered my mind to get it. But now, after my experience with shingles, I highly advise you speak to your doctor about your risk of shingles and to get the vaccine.

While I am relatively ok now, my doctor said that the other symptoms that I have could last a while. Potentially forever. But as a result of this experience, I have learned not to ignore what my body is telling me and not be afraid to seek help if something is wrong.

Oh, and to always trust my mom’s diagnostic skills.