It’s Been Non-Stop Since January

I feel like I have been going nonstop since January. Girl Scout cookies started. Then it went online only due to Covid protocols. Then they added a month longer to sell. Cookies will close this weekend; which will be a headache and a relief all at once.

I start fundraising for Walk MS in January every year. I am always an elite team (because I like the perks and raising money to find a cure for MS.) I hold a raffle every year. I coordinate it and set it up. This year it was really hard to get donations from corporations but my friends and family stepped up and gave me over 25 beautiful items to raffle. We raised over $8400. It was even more special because this was our 8th year Walking and I decided I wanted to raise over $8,000 as my team goal. Last Saturday, we socially distance walked with family and friends at a local park. It was really fun and thankfully not too hot. I LOVE WalkMS! It’s my passion project from January to April but like everything else, I am relived Walk is done for the year.

Yesterday, we had training for California State Action Day with the National MS Society. State Action Day is a day where we talk to our local legislators and ask them to support priorities for people living with MS. This year we are working on getting AB 32 Ensuring Telehealth Access is Implemented Beyond the COVID-19 Pandemic and AB 347 Reform Step Therapy Protocols.

On yesterday’s training, I shared my story of how having access to telehealth during the pandemic was vital to my physical and mental health. I strongly believe telehealth needs to be left in place as a healthcare option after the pandemic ends. There is a lot of momentum from patients and doctors to keep telehealth in place. We are also working to get support to Reform Step Therapy. Step Therapy is when an insurance will make you take the cheapest medication or therapy and you have to fail (have disease progression) before they will move you to the next medication and the next better medication. I firmly believe if my private insurance had put me on the aggressive therapy the neurologist requested for me when I was first diagnosed in 2012, that my MS wouldn’t have progressed as fast as it did. Monday we advocate for change!

It’s been a lot. I am ready for a break. It keeps popping in my head that my kids will be out of school in a few weeks for summer break. I still feel like time, just sort of rolls together with no breaks since lockdown started last year. It doesn’t help that I cut caffeine from my diet either. I feel good until like 11 in the morning and then I just start slowing down. LOL

I hope you’re remembering to take breaks, cut yourself slack and ask for help if needed. I am not good at any of those things but I have been trying to make MYSELF more of a priority; maybe now that I will have some more free time, I can amp that up…