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What a Lupus Flare Is Like for Me

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May is Lupus Awareness Month and recently I experienced perhaps one of the worst flares I have ever had in my life, so much so that it was life-changing. At this point in life, I thought I had gone through all my life-changing moments. I was wrong. I thought I had my lupus under control but over the past few months, I had worn my body down, which caused my lupus to flare completely out of control and have some rare side effects.

Several weeks ago, I experienced yet another “life-changing” moment — one I thought I would never experience, but here we are. I was talking to a friend in a normal voice, and then all of a sudden, I couldn’t get my words out. I was stuttering and slurring my words. I thought it was a one-time thing but nope, it wasn’t at all. The next day my symptoms got worse and I couldn’t pronounce certain words, I had numbness and tingling and lots of pain and swelling. I was extremely exhausted as well.

I was eventually rushed to the emergency room and was quickly admitted to the hospital. I spent a week in the hospital with them trying to figure out why I had suddenly developed slurring of my words and stuttering, and they couldn’t. They did, however, figure out that my heart was getting weaker and that was causing other issues and complications. I was to follow up with a host of doctors upon my release, as well as start occupational and speech therapy. They also concluded that my lupus played a role in this situation.

Days passed and I set up my appointments. Apparently, my loss of speech due to this “neurological event” scared so many people on my medical team that I was on a very short leash. My doctors were stumped and could only theorize about what happened, but it came down to this: months of infections without allowing my body time to recover, plus traveling, plus one of my rare migraines stressed my body and threw me into a lupus flare and affected my speech. The good news was I would recover, but I may have some long-term speech difficulties. Fair enough. I knew this recovery would be hard, but little did I know just how difficult it would be.

I soon began speech therapy and occupational therapy, and sweet Jesus, did I learn just how hard this journey would be. I found myself breaking down more times than I cared to because I knew the words or wanted to do the exercises but couldn’t because my hands wouldn’t let me or I couldn’t get the words out. And it hurt me mentally and physically. I found myself reflecting on the hurt I was feeling from the stares from people when they heard my broken speech. Was this my new normal? Whatever the case, I knew I had to feel this pain so that I could keep going.

As painful as each step is, I know I need to keep going. But in the process, I have learned a few things:

1. The world is very ableist. Like beyond ableist. I have had to work on getting affairs settled with my job while I am out and the process has not been easy. Using voice prompts when you have a speech disability is not easy. It took me twice as long to get through to the correct departments and get business handled and it was beyond frustrating. And the people weren’t much more forgiving than the phone systems. Having to conduct business and wearing a mask when it is hard to be understood did not make things any easier, either. But somehow I persevered and things got accomplished.

2. I am strong, but I needed to cry. I needed to shed tears to have a physical release to move through this process. I had so many moments where I just cried myself to sleep because this was a lot for me. I need to let out my pain and anger so I could heal in other ways. Losing one piece of myself that I had come to rely on often is hard, and I need to be OK with that. It will take time, but things will be OK.

3. Asking for help has been hard, but it was totally necessary in order for my body to heal the way it needed to. I have lost strength and my body is super fragile right now. I need help… I hated to admit it, but the sooner I did, the easier things got for me. I can’t heal if I am continuously pouring out and not taking time to restore myself.

4. Rest is more than a four-letter word. When my doctor wrote me out of work for a month, initially I felt sadness, anger and frustration. But then I realized just how sick I am and how my body needs extensive time to heal. Imagine a car that ignored its oil changes and other maintenance and the check engine light, and then all of a sudden, it all broke down at once. That is what happened to me. I had been ignoring things for far too long and my body just wore out.

5. Invest in small things to brighten your day. I have ordered things or bought flowers to make my days brighter and better. I have a journey ahead of me, so why not make things pleasant?

6. Grant grace and be patient! I know that this is a whole journey and won’t happen overnight. I need to be patient and accept that I will have good days and bad days, and I may have moments where I am not making as much progress as I want to. And all of that is OK. This is not a sprint, but rather a slow journey.

Now that I have been in the thick of this for a while, I have truly realized this doesn’t define me. I am no less of a person and I am who I am. This is just one chapter in my book, and once I make progress, I will have a whole different chapter to write as a follow-up. Some great things can come from this, but I don’t have to push myself through that right now. My focus is healing and returning to my version of normal.

For those who are going through something similar, remember you don’t have to be this fabulous super positive kick-ass person. You can take some moments and just be you. Just be a person who takes time to rest and recover and let your body heal. That is just as important.

Originally published: May 12, 2021
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