That’s My Lupus, She a Real Bad…

Oh lupus. You miserable little bitch.

As many of you know, about two years ago, I was diagnosed with an autoimmune disease and am now being treated for lupus.

It started just with random sickness and symptoms that progressively got worse over time. I had indescribable joint pain, especially in my hips, toes, hands and elbows. So, for a long time, they thought I had some type of arthritis, but none of the arthritis meds they tried did a thing. Then other things started happening; hair loss, kidney pain, blood in my urine, hives, fevers, brain fog, extreme fatigue, and the rashes. Oh my God, the rashes. I get terrible, TERRIBLE rashes all over and it is miserable.

For a long time, I tried to hide my pain or “suck it up”, until I realized that I actually had something wrong with me and this pressure and stigma we put on ourselves to “suck it up” is complete and utter bullshit. Sometimes you can’t suck it up. You just can’t.

And just to give you guys an idea of how bad my lupus was at one point, let me take you back in time.

After I had been doctoring for over a year, with absolutely no answer in sight, I was exhausted. I was tired. I was sick of being in pain. My mental health was completely wrecked. My son had to go stay with his dad or with either of my parents/siblings while I was in and out of the hospital for days at a time. And everyone kept telling me there was nothing wrong with me!! I am not kidding you. Even doctors were like, “We just can’t find anything wrong with you”. I was losing my fucking mind.

I called my sister one night when I had hit the end of my rope . I was so tired and the pain was taking over everything and I told her that I can’t live like this much longer. It was a very hard moment. And everything I said to her in that moment was very real. We both cried and we were both lost.

Finally, after many more phone calls and doctor visits, I got referred to Rheumatology and the game changed.

They drained my blood like a vampire, with like 20 of those blood collector tube things, sent it off for testing, and then got me put on the correct meds for lupus.

I started to get better almost immediately. At least that’s how it felt since I wasn’t in constant pain anymore. Once the pain subsided, I could sleep better and start eating better and I started walking and slowly working out again. I was slowly coming back to life. I was just crying tears of joy because I felt so ALIVE again and I was so unbelievably grateful to feel all these happy feelings when I had been so sad and depressed for so long. I was just on cloud 9, beaming with happy tears and praising Jesus!

And then BAM. Another flare-up hits and knocks me on my ass, hard.

Here we fucking go again.

As you can see, having an autoimmune condition is not easy. It’s been one of the most challenging things I’ve faced as an adult. It is forever changing so I have to constantly be doing my research to stay on top of it. Somedays certain foods don’t irritate me at all, somedays that same food will cause me to break out in hives. Somedays I feel like a million bucks, and somedays mowing the lawn makes my throat start to close. No, seriously. Hence why I carry an epipen with me everywhere now. I used to need it for just bee stings, but now I need it in case the air decides to piss off my lupus one day and she tries to kill me by closing my throat. Linda, my lupus, is a ruthless bitch, and I hate her.

My newest symptom I’ve developed is issues with my left hand losing strength at times. So random. So, once again, down the rabbit hole of knowledge I go to see if there is anyone else out there with this symptom and what they did for it. It is just so exhausting and annoying that I can’t even find the right words.

However, I refuse to accept anything lying down and be a whiny ass loser about my illness, so I created a business that allows me to handle my health issues but also to keep the home fires burning.

Having my business has been the greatest blessing in the world to me. My clients are so understanding and patient with my flare-ups. And I’m sure that’s not easy to do. Because the truth is, I have to cancel and reschedule appointments often. And it is so frustrating.

When that first started happening, I used to feel so guilty about having to cancel someone. I would cry about it all day and torture myself with the dumbest stuff like, “You suck at being a business woman. You are never gonna make it if you cancel everytime you’re sick. Just quit. You can’t do this, etc”. Just beating the shit out of myself…because I was home in bed with a 102 fever, bloody hives all over my body, and swollen joints so bad you couldn’t see my actual elbows anymore. Seriously.

That’s when I obviously got back into therapy to focus on this, to learn to give myself a break, and to accept what is going on with my body; I have lupus. This statement is true. I need to accept this and start adjusting my life accordingly.

So, fast-forward to present day. Now, I am feeling better than I ever have, but I still have flare-ups, especially after I’ve just traveled somewhere. Traveling is really stressful on my body for some reason and that is a huge trigger for my lupus. And, unfortunately, when I am sick, man oh man, do I get sick, like scary sick sometimes. So it is a constant learning-curve of a disease but I am doing my best to navigate through it.

The hardest part about this disease for me has been the “feeling like a failure” part. You do. You just feel like a fucking failure because your body doesn’t work right and you have to cancel another appointment and you feel like you let your client down and that they are secretly mad at you (hello anxiety) and that you are just a failure of business woman. It’s just an awful cycle.

Thankfully, I go to therapy and that has helped me sort through a lot of those emotions.

This is why I started sharing my lupus story with my clients and on social media. It helped ease my anxiety knowing that in the future if I have to reschedule an appointment my clients would most likely understand because I share so much of my story with them. And I so grateful that that has been my experience so far with all of the wonderful people I’ve had, and still have, as clients. They are all truly so incredible and understanding and I wouldn’t have a business without them.

Even though, I am beyond grateful for my understanding clients, I have had to accept the limitations that might be placed on my body over time. For example, what if I lose all strength in my left hand? I mean yeah that’s (hopefully) a worst case scenario, but you get my point. Also, I am left handed. So, there’s that.

Granted, I don’t expect anything too drastic to happen to my body relating to lupus right now, but I do see it gradually becoming a problem over time, so that is why I am dabbling in multiple avenues now. I would love to be an author one day, a motivational speaker, and a mental health advocate. For now, I love writing my blogs and now I love getting to create new shirt ideas for my online store, MCA Merch. Because, even on the days that I am home in bed, I can still write. I can still create. I can still think and come up with funny reels to make or whatever. I can still feel like I am contributing something good, with my writing at least, instead of just feeling so useless in my body.

Having this disease has forced me to think a lot more about my future than I ever did before. I mean, I expected at like 60 to be like, okay maybe I’ll start slowing down over the next 10 years….not at 34!!

However, having this disease has turned into a beautiful blessing. I have connected with so many people over it, I have helped other people go get diagnosed, and it forced me to be honest with myself and start respecting my body’s limitations. Now, because I have been so open about my lupus struggle, I no longer punish myself and cry when I have to cancel or reschedule an appointment. I just message my clients what’s going on and thankfully, it is always met with a kind word or prayer to get better soon. Again, I am so grateful for that.

I wanted to talk about all of this though to shed some light on the realistic struggles of having an autoimmune disease. I still have goals and dreams and big plans. I have things that I was to accomplish. But, my body fights me on that a lot and I oftentimes have to give in to it. So, you constantly juggle between resting and maintaining your health, and keeping your lights on and food on the table.

Getting lupus has been completely life-changing, in ways that I can’t even describe. But it has taught me so many things along the way. It has taught me to be kinder to people, because you really don’t know what they are struggling with at home that they don’t tell anyone about. It has taught me to be kinder to myself, because I have been so hard on myself for too long and it’s just simply not a useful habit to have. And, it has also taught me to listen to my body, because sometimes you truly need to rest and need a break. You don’t need to suck it up. You need to rest. Why I know that lesson so well now, is that if I don’t rest, my body will completely shut down on its own and send me to the hospital, again.

I am hoping to share my lupus story with the world, and someday, hopefully connect with someone who has found a cure. So, feel free to share my blog if you know of anyone who might know of someone else who can help. Knowledge is power.

Also, remember to just be kind to people. It’s hard enough out here.

Happy Trails,

Em