Trying to Keep the Merry in the Merry Month of Margit

 

 It feels like a long time since I sat down and connected with my GoFundMe community — friends, family, and all who care to follow how we navigate this obstacle course called living with Lewy.

We’ve been dealing with some outside nuisances lately — a bit like a buzzing mosquito trying to throw us off track. The track being: to have more fun than stress. But hey, these experiences keep us even more focused. The force is still with us, and so are our beloved and caring friends and community.

We come out stronger, more focused on what truly matters, and the bonds with our people grow even deeper.

Tomorrow is my birthday and traditionally May is known as: The Merry Month of Margit.

Mother’s Day brought sweet connections with young mothers, old mothers, grandmothers, brand-new mothers, and everything in between. There is a mother in every woman.

Babies are popping out like mushrooms — much cuter than mushrooms, I might add — and somehow I get to be part of this magical baby wave beyond my own ador-a-bell granddaughter, Mabel. She has started talking quite a bit, and let me tell you: the terrific twos are not to be underestimated. What a blast this child is.

I recently got to be instrumental in Mabel’s very first overnight without her parents. Yes, I got to be the one sleeping in the Himmelbett, snuggled up with this delicious little being while her parents escaped for a much-needed day and night together.

James got to hear about it almost daily while spending his week with Coby, Wimbledon, and Coby’s cat Poppy.

It isn’t easy, let me tell you.

Lewy has tightened its grip on our James lately. It now shows up in the form of people appearing in our living room and sitting on our outdoor furniture — not only during sundown, but also during nighttime bathroom visits and sometimes even in broad daylight. Super rude. Not easy to navigate. So far the “visitors” are peaceful, but awkward… very awkward… and often downright disturbing.

James and I are both learning how to deal with these intruders, now almost daily companions.

At the same time, James’s body has decided to provide an additional workout by becoming stiff, uncooperative, and contrary. When James tries to direct his body one way, it often chooses another direction entirely — especially during nighttime and early morning bathroom trips.

A whole new world for us to understand and navigate.

We recently saw both our wonderful women doctors — one in Point Reyes and one at UCSF — and both were genuinely happy to see how well James is doing. They said he looks good and is doing remarkably well considering that Lewy has clearly moved in permanently and made himself at home more than ever before.

Well… I suppose they know what other tricks Lewy could still pull on us.

Time is moving in the predicted direction, but according to our doctors, more slowly than expected — and for that we are grateful.

Another challenge caught up with us this month, one that doesn’t exactly fit into “The Merry Month of Margit”:

James was cut off from Medi-Cal starting May 1st.

Honestly, I’ve been so shocked that it’s hard to even admit the financial panic this caused. Most of James’s support comes through Medi-Cal, including IHSS, which allows me to care for him and only work outside the home two days a week.

He had  been approved in April for neck and spine therapy, including an MRI before treatment, and now we are suddenly left trying to understand what is covered and what is not.

Thankfully, we do have help from a special social worker (paid by medical, but not anymore in the last two weeks) who is still trying to guide us through this maze. It’s still early in the process, and after my birthday I’ll try again to focus.

Ironically, just as he needs more care and support day and night, coverage disappears.

What is wrong with this picture?

I can ask that question until the cows come home. I know… things everywhere feel like they are spinning out of control.

Still, we are trying to keep our feet on the ground. Birthday first…..tomorrow is another day.

Thank you to our community, our friends, our family, and our loyal supporters.

We truly could not do this without you. Hands down!

Until I write again… stay strong, stay healthy, stay connected, and keep loving. (I am telling this to myself too)

With hearts full of gratitude and deep appreciation,

James and Margit