Pause

I was seriously about to write this as a Facebook post- "Dear People. I have zero patience today due to things outside of my control and clearly outside of yours. But that said, just do what I am asking and don't push back or add instruction or your thoughts about the reason why I don't actually need what I am asking. Ugh!"
As I was about to hit Post, I paused. I mean, that is not helping anyone. Not me. Not the people that actually read my news feed. No one.
So, in the pause I asked myself why. What purpose did it serve? Was it kind? Was it helpful? Yea, no.
So I deleted the post and paused.
In my most recent post about lessons learned, I said "Find the Joy". Well, instead of being a yet another negative source on social media today, I created a new project for myself. I think it will help remind me of my own life lesson and will help bring, at the very least, a moment of joy to every day.
In pausing for a brief second, I made the decision to find the joy.

So, here we go...

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. 

A heavy heart and the power of love

This week my heart is so heavy. As anyone that knows me well, knows and understands, my default mode is to find a silver lining. It is a gift and sometimes super annoying. I mean, sometimes you just need to be mad, annoyed, or sad. But my brain automatically find the joy, the happy, the good stuff. But this week, it just all seems too much. And my heart feels heavy. No easy-to-find silver linings.

There was some terrible, worrisome news about a dear one, some frustrations with health, a death in the family, some maybe not so great news at work, and the situation at our border. The news reports about children at the borders was the tipping point for me. It broke me. I cried. I do not do that when it comes to news that does not affect me directly. I care and I take action but rarely (if ever) do I take it on as mine. But this time is different. They are innocents. The problem is mine. It is all of ours. So I took the action steps I could take- made calls, wrote emails/letters, made some donations and signed up to volunteer. I feel I should do more, but it's what I can do for now.
Normally, those actions and steps should make me feel better and the heaviness in my heart should go away. But it's still there. I find I am carrying the weight of the issue on my shoulders and in my heart, along with all the other news (from my life) from this week. Sigh.

Now don't get me wrong, I have found moments of joy- laughing with my guy, hanging out with a hilarious mascot and creating new life goals, my silly pups and their innocence and cute/funny antics.

And then this...

Yesterday, I unexpectedly found myself in a waiting room with a million other patients waiting to get some blood work done. The waiting area was packed and I found myself in a little corner seated across from a couple. I didn't catch their names and actually didn't engage them in any conversation. I just listened to them- talking with one another and some ladies next to me. And I found tears coming to my eyes (not the heartbroken ones from earlier this week), happy tears. Tears that you get when something touches you deep in your heart. In those moments, I always feel like an imprint is made and that moment or feeling stays with you.
As they spoke, I learned they have been married for 33 years. He says it was love at first sight for him. For her, she says with a mischievous grin and a twinkle in her eye, it took her a date or two. Then she easily brushed his hand and held it. As their story continued and the ladies asked some questions, it was revealed that she has been battling ovarian cancer for more than 3 years. As I watched, I could see the tenderness and care with which he cares for her. There is kindness, love, and laughter in their interaction.
And then he says, "I am a humble man but the one thing I will always brag about are my girls- my beautiful wife and our two daughters. Each one is incredible because of their mother and her example." And with some tears in his voice and a softness of love, he moved to share the bench with her so she could rest her head on his shoulder.

This human kindness. This love. The seeming lack of it is what has made my heart so heavy. But this small interaction made my heart a little less heavy. Thank you for sharing you love and your story, whoever you are.

I am not new to losing someone I love. But I wouldn't ever tell you that I have known excessive loss in my life so far. I will be the first to tell anyone that I have lived a very charmed existence, including being lucky enough to not have suffered a significant amount of loss in my life.

Don't get me wrong, I have experienced the loss of loved ones. The loss of great-grandmas, a special neighbor/family friend, one set of grandparents and beloved aunts. I think of those losses, the most profound of the group was the death of my Aunt Christine. I think because she wasn't old, she wasn't sick. There was no time to "prepare" for the loss. And I think it was most profound because I was with her when she died. Her loving husband and children made the decision to take her off life support (a decision that was difficult but kind) and as a family we created a schedule so that she was never alone- there was always a family member by her side to offer comfort and love as her life on this earth came to an end. During that late afternoon more than ten years ago, while listening to her favorite songs, she took her last breath. I was there and it was one of the saddest and most profoundly beautiful moments of my life. One of the nuns found me at the funeral and took me aside and told me that a soul doesn't depart the body unless it feels safe. She went on to say what a gift I have to offer a safe space for a departing soul.  She went on to say that when a soul feels safe, it can leave this earth and go on to heaven. In that moment, it gave me great comfort and has stuck with me over the course of these years. Since that time, I have lost friends and loved ones and I always hope the dying had a "safe space" as they passed.

Fast forward to the last few weeks when our sweet Buck has been coming near the end of his life. Yes, he is a dog. Was he as important as the people I have lost before in my life? Perhaps on the surface and to some- no. But to me, to us, he was. He was part of every single day of the past three years. He made me a dog person. His cat-like ways almost disappeared with me (with Frank and a few very special select others too). He was so cute and so fluffy that any semi-dog person or small child automatically fell in love and just wanted to snuggle him. I mean, I get it. But after some time, he was over it and would hide behind us to protect him from too many pets. After a little while, instead of Frank, he made me his protector. His safe space. So when whistles or storms or squeaks occurred, I'd find myself with a dog breathing in my face. And in the middle of the night, I'd find my way to the bathroom and turn on the fan and the light so we could ride out the storms in a safe place. So, the other night when the first rainstorm came and I wasn't awoken by a nervous dog, I cried. And then I sincerely hoped wherever his next place was that he could be without that fear.

He was my walking buddy, my pal. Frank's Buschka. My Buddha. Ellie's lifelong partner in crime. Walter's favorite dog pal and guide in his new home. And we are each missing him in our own ways. Frank's habit of saying "Buck wants..." breaks his heart every time. When I get Ellie. Walter and Maria out the door in the mornings, I feel like I am forgetting him everyday and then I tear up a little. Same thing for when I feed them. Ellie is blatantly sad. Walter keeps looking for him in his spots. He was mostly a quiet dog, who didn't require much to feel loved. But he took up an immense amount of space in our hearts and in our home. And we are missing him.

I wonder how long we will feel the loss every day. I know we will always have moments when we miss him but I hope this empty spot in my heart starts to stop aching soon.