I don’t always explain why I share some articles, some days they are just fillers for the days I don’t have content or energy to write. Often it’s information that I feel is beneficial to you, the reader, either as a pALS or as an integral part of my support system. I’ve found solace in this community of writers, warriors in the fight against ALS, and encouragement for all of us trying to live our best lives. I won’t recap all of the reblogs, just some that I feel need some additional insight.
Y’all, I love learning and sharing about ALS with you, with strangers, with anyone that will listen. We do a HUGE push in May for ALS Awareness Month and I’m very grateful for the connections, encouragement, and love that pours over us throughout that month of intense sharing. The first year was full of exhaustion – 2015 – because that was the first time I had told everyone publicly of my diagnosis. I woke up every day and wrote a FB post about something to do with ALS. The next year was much of the same, re-sharing the previous years info and elaborating on the content. I don’t recommend starting your days googling the worst ‘fun facts’ of the disease that is taking over your body – try coffee, it digests better. 2017 was a game changer because I was 5 months into this whole ‘blogging’ thing which allowed me to bullet point 31 posts, write when I had time, and schedule out the posts – whew! 2018 was the hardest by far for my Type A, control freak, non-working self. I had a plan that went 100% out the window, Carlie and I found ourselves in DC at the Advocacy Conference, and two of my friends died.
My point is, and why I shared Dagmar Munn’s post about vacationing from ALS is because if you let it, this disease will eat you alive. It would be an honor to be a martyr one day for something that defines me, but I’ll be damned if it’s ALS.
Rick Jobus is raw, intense and honest. He’s giving ALS hell every single day, and clinging tightly to everything that makes him Rick. I rarely read one of his blogs without fist pumping and praising his determination. Rick is a mentor, whether he knows it or not, and motivates me to keep my chin up – even if means wearing a brace one day to prop it up.
I know I don’t tell y’all enough, but each of you is a crucial part of my ALS Stress Toolkit. Your encouragement – even just in the form of hits on the blog – is what motivates me to keep going, or to call it a day and accept the rest my body is demanding. Do you check in with yourself? Do you have a Stress Toolkit?
Read it. It’s tough but it’s part of our reality with ALS. I have an Advance Directive – and you should too – and I recently signed my DNR. Kenneth and I discuss this stuff regularly and are very open with each other about our wishes.
Between you and me, my biggest fear is that a decision will have to be made, without me being to offer input or reassurance, that will lead to guilt or regret. The last thing I want for my husband is for him to feel anything other than confident when acting on my behalf.
This offsets the previous. Y’all know I’m always trying to find the silver lining, laugh at myself or the irony of a situation. I refuse to let ALS steal my sense of humor or my smile – those are important to me.
I speak to this fact all of the time. The ALS community is absolutely amazing. I have made so many friends – virtual and in person – that I would never have known without ALS. I find a lot of support in a Women’s Forum on FB, we are able to share our struggles, celebrate our victories, and discuss topics that are difficult to approach in other settings. God has provided crucial people for us to walk this journey together.
One more Dagmar Munn repost because, well, she’s awesome. I feel like she’s talking directly to me when she posts blogs like this. Now Sunny, this is where you need to listen because this part will be on the test of life. Self-care isn’t in my nature but I’m working on it.