{I define who I am}

March is National Autoimmune Diseases Awareness Month and I last night I celebrated in the ER. Yes, I do find ironic that my ER visit coincided with autoimmune awareness month! Talk about fated. While, last night honestly scared the crap out of me it was not all bad. I have really been focusing on getting healthy this year and this was the wake up call I needed. (Though this was more like a drop kick to the gut.) I have ignored the signs, symptoms, disease for far too long. I have a disease and my willingness to accept it or not is not going to make my symptoms disappear. 

dis·ease   noun \di-ˈzēz\ : an illness that affects a person, animal, or plant : a condition that prevents the body or mind from working normally.

It was nine years ago when I first heard the word. I was scared of what it would mean for my children and me; but the fear was like a child afraid to sleep alone in the dark. The dark is unknown, the monsters unseen. After last night, Lupus truly does petrify me as I realize I have so much more to lose if I continue to let things go as they have been. 

 In the past years I have had dozens of days with foggy memories. A few years ago, I actually "woke up" in the hospital - turns out I forgot who I was and checked myself in. Then I pulled the IV and slipped out when no one was looking. 

Then there are the headaches. I have always attributed those to "caffeine" or "stress" induced. Turns out, I was wrong. I recently GREATLY cut back on the caffeine and guess what no headaches. Nada, Zip, Zilch, NONE! I went about a week without any headaches despite my reduction of caffeine and uptake of stress. Then last night it came creeping back like a long lost stalker.

Moving on the the painful or swollen joints. This one is difficult for me as I also have RA thus it is hard to tell what is Lupus related vs. RA pain. Lately, I have been a lot more swollen and stiff however I have also recently started working out (and probably overdoing it) so I just figured the workouts to be the cause. 

Anemia, oh anemia how I loathe thee. All I will say in this area is I look like Casper the friendly ghost...even in the Summer. :) 

Allergies, that was my "go to" every single time I would wake up with swollen/puffy eyelids. "These darn allergies!" I work for an Optometrist so I would just get to work, put in some drops and within an hour or so I was good to go. Never once did I stop and think maybe Lupus had a part to play. 

The butterfly rash is something I don't experience often. I am always a little red and look like I have extremely mild acne but as you can see in the picture Joe took of me last night (very first picture) I was looking all hot and bothered. (Unrelated to my butterfly rash, I do tend to break out on my lower forearm with what appears to be hives frequently.)

Yesterday afternoon after swimming was the first time I have ever experienced this next symptom...purple feet! So purple the tips of my toes were almost black. My cousin, daughter and boyfriend we all witness to this loveliness. Oddly enough, I was not hot or cold but rather comfortable thus I have no excuse answer as to why this happened.

This brings us to my favorite symptom... fatigue. Seriously?!?! Who isn't tired. I work full time, run a household, sell Thirty-One and run my own photography company.
Tired is an understatement. I have been taking supplements to help me with my energy and they make me bounce off the walls. I am talking full crack-head mode here. (It has felt so good to not be exhausted when I come home from work though I am not sure how my coworkers feel about the new energetic me.) 

So here I sit, still aching from my most recent flare. And I only have myself to blame. Why have I tried to run from my illness for so long? What reason do I have for trying to avoid it's existence? Here it is...I didn't want people to look at me as if I have a disability or that I am weak. Lupus is an invisible fight for me. That being said, I think it is now time I make some noise about it. No, this does not mean I am going to constantly complain or tell you EVERYTHING I am experiencing. If no one is aware of the struggles people with Lupus have, we will get no closer to finding a cure.  

I am not writing this for people to feel sorry for me, treat me differently or try to "protect" me. If you are my friend and you are reading this, please make sure if you see me feeling sorry for myself you tell me to, "suck it up buttercup" because for me that is what I need. (Those words are NOT appropriate for everyone though.) If you want to help, help me to keep my eye on the prize, help me to realize everything I have been able to accomplish in spite of this disease, help me to continue to admit to myself that I have a disease and that sometimes I am going to have to take it easy. But promise to NEVER let me give up!

Lupus doesn't define me. I like to think that it redefines me and the expectations I have for myself. While I still wish I did not have Lupus, I think I have come to realize that it is a part of me and it is a part that I can not longer ignore or brush under the rug. Truth be told, I wish I could have admitted to myself that I have a disease years ago, I wish I had started taking better care of myself earlier in life but such is not the case and I can not turn back the clock. 

I am still very much coming to terms with and dealing with everything that comes with it. Can you tell the Doctor scared the bajeezus out of me? It is funny, when I learned my daughter had hypermobility syndrome I Googled and learned everything there was to know about her disease and how to best help her. Yet when it comes to myself I have not Googled or even attempted to learn anything about my disease. I always seem to put myself on the back burner and that is something that is going to change. 

The world will not come to a crashing halt if I stop and make myself, my health a priority.