Hello Family and Friends!
This is our first year participating in the Lupus Foundation's "Walk to End Lupus". 7 years ago, Tim started to have severe joint pain, he could not bend his elbows enough to wash his face or remove his glasses. His face and cheeks were terribly enflamed, he was fatigued beyond belief... and that was only the beginning of a laundry list of crippling symptoms. We didn't know what was happening. We had just moved into a new home, and Tim had finally got into the airlines after a lifetime of working towards a career as a pilot. Flying centered Tim, it identified him, it WAS him. This was supposed to be a time of beginning. I suppose looking back now, it was... but all it meant for Tim then was the end of everything he lived for, everything he loved, everything he had planned. He was diagnosed with Lupus. Along with his health, his identity was ripped from him. Tim lost his flight medical and could no longer work as a pilot; he couldn't even fly recreationally. Tim lost his health at 26, but at the same time lost everything that he was. It was too much. We could not accept it.
The path from there to here has been long, and we sometimes do not know how we made it through that darkest time. Tim credits the love and support of his wife for keeping afloat... until, despite still struggling with that feeling of loss and crippling symptoms, he could start to work towards a new future for himself...for all of us.
...And "us" is bigger now! We now have io, Tim's service dog, who we trained ourselves for balance and mobility under the supervision of professional instructors. Then came the love of our lives, Anna (...and we are now excitedly waiting for Anna's little sister, Eva, who will arrive in March)! We bought our home in the mountains, and in this new space created a life that would support Tim's wellness as much as possible. This meant changing every aspect of our lives, through trial and error. Learning what works for Tim has been an arduous process to say the least. It is hard to put into words the changes we have ALL had to make to support Tim's wellness. Some symptoms include debilitating fatigue, hyper-sensitivity to UV light, severe mood wings, and inflammation causing flares on his skin and internally. Combine this with an inability to travel very far from the necessities that keep him going (which keeps us from traveling to visit family), ER scares, canceled plans, vertigo for months on end, the crushing medical debt, student loans for a career we will never have, the constant effort to work though the fog to support his family, and the immense guilt Tim feels for not being able to participate and show up for his family like he feels he should. Still we are lucky, others have it worse.... and others don't make it at all.
Trying to write this has been very difficult. It has been 7 years of the hardest thing we have ever faced day-in and day-out, shortened into a few paragraphs that, while it by no means captures the whole picture, we hope communicates SOMETHING of what this is like for Tim, and for his family, on a daily basis...
We are walking to raise money for a foundation that funds research towards discovering the causes of Lupus. When we know why it is happening, we will be able to see a path to healing. We wholeheartedly believe this. This is why we are walking, and why we ask that you walk with us.
This is a Virtual Walk. So be sure to take pictures and share them with us! :) What we would like this to look like (and what would mean the most to us) is that after you donate whatever you can (any amount will help!) we all go out individually for a quiet day with our families on May 5th. Choose a place that is special to you... a hike in the park, a walk through town, a stroll through the museum, whatever touches YOU! :) Wear purple, and think of those who struggle with chronic or terminal illnesses of any kind. Be thankful. Spend the afternoon with your family and loved ones. Appreciate the beauty of the day... because tomorrow is never guaranteed. Thank you. :)
Tim, Casie, Anna, & Eva Meijome