When a Bad Lupus Flare Sent Me Back Into the Grieving Process

I was diagnosed with lupus in September 2011. I’m coming up on six years. I thought I had this thing somewhat under control. You know…the ups and downs and chronic pain I’ve learned to deal with…I knew what to expect and what flares entailed. I knew my life wasn’t where I wanted it but I was on my way to get it there. I’ve worked tirelessly to make sure I take all of my medication, I stretch, I work out or walk as much as possible, I am trying to eat better and most of all I have a positive attitude which I think is incredibly important.

So what happened to me last week sort of shook me back to an all too familiar reality.

Toto, we’re definitely not in Kansas anymore.

Maybe I’ve been living in Oz. And that’s very hard for me to say right now because I thought I had this figured out! Maybe not physically, but mentally at least. Reality check…Glinda sent me home,  things are black and white again and last week all of the color was drained from my life.

I had a vacation planned. And by vacation, I mean staying in a camper by the beach with my boyfriend’s family which is about 45 minutes from my house. That’s a vacation for me and I am completely OK with that…and I was so excited! We were bringing our dog and it was going to be a relaxing week of BBQs, bonfires, good music and great company. The first two days were exactly that.

I love the beach. I grew up with it down the road from me. I went to camp there every summer and it’s always been my happy place. Since being diagnosed with lupus, I was still able to tolerate the sun until recently.

The past few years, I noticed feeling more drained and my skin would feel burnt after a brief time in the sun. So I acclimated. I invested in hats, sunscreen, a swim shirt, sunglasses and always played it safe. I asked my doctor about photosensitivity and she suggested dipping my toes in the water per se, to see how I’d do. So I figured hey, I’m on vacation having a great time…let’s see how this goes.

I set up camp at the beach on day two. I had a tent over me, an umbrella next to the tent, SPF 30 all over, a hat, sunglasses and I was in heaven.

I took a brief walk up to the bathroom and the warmth on my skin and sand between my toes felt amazing. I told myself this is the time…I’m testing it out. So I laid out a towel and for about 10 minutes soaked up the sun. And I enjoyed every second of it.

I started to feel tired and we were all getting hungry so we headed back to the camper. The rest of the night I felt a bit off, but I figured it was a big day for me so I just hydrated more than usual, wore my compression socks and relaxed all night.

Then morning came.

I opened my eyes and I knew right away it was going to be a bad day. I didn’t mind staying in the camper because it feels like a house! I slept most of the morning and then my boyfriend and I left because he had an appointment that night.

That’s when I realized I definitely wasn’t in Oz anymore.

There were no longer beautiful colors and lions and tigers and bears and witches and all the fun that comes along with life. There was black and white…more black because I could barely open my eyes.

I was in a major lupus flare. Now, I’ve flared for months at a time…but this hit me like a ton of bricks, literally. I felt as if someone hit every joint in my body, and my head, with a hammer. I couldn’t move. I couldn’t think. I couldn’t cry. All I could do is lay there and hope it would pass.

I called my doctor and surprisingly she wasn’t sold that the flare was from the sun. I had received my Benlysta infusion earlier in the week and didn’t handle it as well as usual, so there were other possible causes. I tried not to think of them because trying to figure out why a flare comes on sometimes is like Sisyphean labor. My rheumatologist told me to dive into my stash of Prednisone and if this was an autoimmune response, that would help before it got out of control.

Now, I’ve been tracking my steps with a Fitbit to show my doctor progress and also to not push myself. One of these flare days I had 477 steps.

477. How is that even possible? I only got up to go to the bathroom. I tried to sit on the couch to have dinner but couldn’t think straight. I was having trouble forming sentences and finding words. I knocked over a full glass of water not once but twice. I couldn’t walk straight. I’m not looking for pity…I just want people to understand that lupus isn’t just being tired and achy. It can be terrifying.

My doctor had also told me that if I was dizzy, my joints were swollen or if I had a fever of 101 to go to the hospital. OK…my joints were swollen, I was dizzy and my fever was 100.1. I told myself I’d go to the hospital if it got worse. And it never got worse…but it didn’t get better. For about five days there was no change.

On the fifth day I called the on call doctor who told me to up the Prednisone for a longer period of time. I did and coincidentally that day I started to feel a tiny bit better. Luckily it just got better from there. Today writing this, I’m still exhausted and achy, but that’s my norm.

I thought I knew lupus. I thought I had accepted my diagnosis. For some reason this flare got me thinking a lot about the stages of grief…which I thought I went through already. In 1969, a psychiatrist by the name of Elisabeth Kübler-Ross wrote a book, “On Death and Dying.” Inspired by working with terminally ill patients, she was the first to write about the five stages of grief.

Popularly known to deal with death or really any other loss or tough time in life, the stages are denial, anger, bargaining, depression and acceptance.

But again…I thought I had accepted this!

I remember denial and anger. I know I’ve bargained and battled depression. But I also know I advocate and do everything I can to fight this disease, which I thought was accepting it. I talk freely about it to whoever wants to know (and even to some people who don’t, haha). That’s one of my coping mechanisms…spreading awareness. A friend told me that the more people know about an illness and someone going through it, the more they care. Then they will talk about it more as well and help raise awareness. That’s why I fundraise every year for the Lupus Foundation of America.

This flare made me question a lot of things. I thought I had this stupid disease somewhat under control. I thought I knew what to expect with a flare. I knew it could get worse, but didn’t expect what I felt. After doing a lot of research on flares, I started researching Kübler-Ross’s ideas (yes, I’m a data and research nerd). Although I have a tremendous amount of faith, if there’s research on something, I’ll 100 percent believe it. So while reading, I realized that these stages of grief don’t have to be linear. Maybe I did accept my illness but then backtracked during this flare because it was the worst one I’ve had yet. I felt myself have moments of spiraling, like Dorothy in the tornado, never knowing when this would end. That sounds like depression to me. I also kept praying to God that I would feel just a bit better for my boyfriend’s birthday which was the Fourth of July (that sounds a lot like bargaining, huh?).

I also grieved. I knew deep down this would pass…but this was another reminder that as well as I’ve been doing, lupus unfortunately is still there. It’s a part of me just as much as anything else in me. It’s sneaky and can hide sometimes but then shows its ugly face. And I’m sorry lupus, but you’re hideous.

So I won’t stop fundraising. I won’t give up hope. I won’t stop praying. But I also will probably cycle through these stages of grief again. I may know the inevitable, that a flare will happen again, but in the meantime I can brush myself off, get up and survive.

Kansas was pretty great for Dorothy in the end, even though it was black and white. And surrounding myself with people who love and care for me through the good and bad…I’m OK with that.

Follow this journey on Nicole’s blog.