Lessons learned living with an autoimmune disease

I have been living with an autoimmune disease for 14 years now. 

In those years, I have learned so much. About myself, about others, about medicine and so much more. 

14 years...That. Is. Crazy! 

It all started because I was swelling- my hands, my knees, my shoulders. It was miserable. During this time, I walked 60 miles in 3 days for a cause and by the end of the walk, my team and I could not stop laughing at the pure comedy of the size of my feet and ankles. Unbeknownst to me, it was more serious than funny. But like most things in life, there is humor in everything. And sometimes laughter is needed, even in a serious circumstance. 

Following a few months of daily swelling and difficulty- including being told I was allergic to my cat (Thankfully, that ended well and he found his perfect home!)- I ended up seeing my physician and she immediately sent me to a laundry list of specialists. Contrary to most people with autoimmune conditions, they made a fairly swift (2 months) diagnosis. It is a day I will never forget. The rheumatologist met with me and started to talk- he said words I had never heard before. And started to explain long term side effects and risk and drug options. I was so overwhelmed. I asked the nurse to write it down, so I could read about it. Sarcoidosis. Now it is an easy part of my vernacular. A word I can say and a disease I understand as well as anyone.  But that day- nope. I left the office and started to sob- the gut wrenching sobs that (thankfully) happen rarely in my life. I sat in my car for what felt like forever. I was crying so hard a kind woman came to the window and knocked to make sure I was okay. I am sure I was a sight. I was 24 and wondered if I was going to die. And wondered how my life would change. I was 24. Life was just beginning. I had dreams and plans. What did this mean? Did I need to move home and be taken care of for the rest of my life? Did this mean my adventures were over? Did this mean my independent life was done? I didn't have a clue. My parents flew me home for the weekend, so they could take care of me and we could figure out a plan. (I am so grateful to have them in my life. always.) By the time I got home the prednisone had started to work it's magic and I was back to feeling okay. It was a miracle! I could maintain my independence, live my life. And there was always the hope of remission! Yay! 

Throughout the course of these years, I have lived! It's an ongoing adventure. Sometimes modified, but no one really knows that but me. Each time I moved to a new state I had to establish care with a new team of ologists (my nickname for the team of doctors). Every time they all say the same- you are a challenge. You don't fit into any box. You react so differently. They also see that I am smart and understand the disease I am battling. They see that I have done my research and will not take what they have to say as the only option. Ultimately, I become their favorite patient. I ask questions. I expect answers. I expect them to provide information or point me in the direction where it can be found. Which leads me to my lessons:

•  Life is never what we plan. And just because it doesn't look exactly as we planned, it doesn't mean it isn't sweet
• Ask questions. Expect answers. 
• Fire doctors (and others) who are not on your team. They aren't bad doctors (bad people) they just aren't the right fit for you
• Find your people. The friends who will come over and open jars for you, or listen when you need to talk something through
• Find the joy. It is always there. Sometimes it is just harder to find. But even the search offers the joy you are searching for
• Adjust your attitude. No one wants a chronic illness, but no one else wants to be around someone who complains all the time. 
• Allow yourself to rest. Be lazy. When fighting all day, ever single day, your body needs days to rest. 
• Embrace the unknown. Autoimmune diseases are no black and white. They are filled with shades of gray. So much gray. 
• Be kind. You never know the secrets someone is hiding. Or the battle they are facing. They might be snippy because they hurt or are scared. It likely isn't personal.
• Though life isn't what you pictured- it is pretty fabulous. 

In high school, if you would have asked me what life should look like at 38, I would have told you the following: I'd be married, have kids, be a runner, and be in charge of a company. Well instead at 38, I am recently married, no kids but I care for a 80 year old lady and am a dog-mom to two of my fur loves. I can't run (which I still miss). Likely, I will never be able to have my own kids. A fact that sometimes hurts more than I expect. But there are options to explore there. I can still run a company and be a great boss (and maybe a better boss because of what I've learned because of my disease- compassion and understanding). It might not be what I pictured at 18, but I'd say my life is pretty great. And though frustrating at times, having this disease and these experiences has helped shape who I am. And I like me, so while I'd like the disease to calm the eff down, I don't know that I would take all of it (and the lessons) away.