Leslie Odom Jr. · Original Broadway Cast of Hamilton
Verse of the day: “take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.”
Matthew 11:29
Rest. Something the entire world seems to put on the back burner of importance when thinking about their day. Especially in the United States, where productivity for the sake of economic gain and worth is prioritized. Where many of us feel guilty and ashamed if we do not produce or work on something in the span of 24 hours. Where we have to save up vacation days, or have no vacation days. Honestly, I believe that most of America doesn’t know what a true vacation or break or holiday is. It feels cut throat, especially with the ability to carry our work with us anywhere with a wifi connection.
So what happens when you can’t work? When you have to take a break? When you need REST?
This is the dilemma of about 1/3 of Americans who have a disability, mental or physical chronic illness. We cannot prioritize work or productivity. You would think “fake it til you make it” mantra would work for us; it doesn’t. It becomes fake it until you flare so badly you are either forced to rest, have a huge flare up of symptoms, or end up in the hospital. (and now have to hope insurance will cover that hospital stay or have some sort of income ready from all that over working to pay for it).
Rest has always been a hard concept for me to wrap my head around when it comes to being complex autoimmune. Even before my diseases have progressed to palliative care like they are now, I never prioritized rest. I used to be a ballerina, and it was taught that you can always strive for better, be better, do better. It was one more time ten more times only to stand on the side and rehearse even more until class or rehearsal is over. Perfecting any flaws by breaking down movement piece by piece over and over and over again. You never truly take a break from ballet. Until it breaks you.
The same applies to any chronic illness. You never truly get a break from being chronically ill. Sure, there are many treatments that may slow disease progress, minimize symptoms, and sometimes put you in remission. But treatment can only go so far currently. And even with the idea of personalized medication – we are still so far from this. So what do we need to do?
Rest.
Breathe
Take one day at a time. One hour at a time. One minute. One second.
Your health is not worth the societal pressure to constantly be working.
The body can only handle so much.
So, to everyone reading this: find a time in your day to rest. Truly rest. Take a break from the work and any other thoughts of things to do or need to be done. Schedule 5-10 minutes of your day for a break. Take time to nourish your body. Especially if you are chronically ill. Sleep. Take a nap. Take what you need. Cherish yourself enough to WANT to take care of it. You only have one life and one body. There is a time for everything, and that includes rest from the world.
So I have a secret. It’s a pretty big secret but I think it makes since why I have kept it a secret. I am 24 years old, and today my heme/onc out of Mayo Rochester, MN discussed a stem cell transplant with me being my next step in my treatment plan. And I 100% said yes to this. It is a very difficult decision to go down this road. Alongside the very aggressive chemotherapy I received for seven months that saved my life, the transplant almost outranks how scary and big of a deal this is for me. I never thought one could be terrified and full of joy and hope at the same time.
This is very extreme treatment. and typically a last resort sort of treatment plan for anyone like me. I know a am privileged to be starting the process of getting one, as after reading many mast cell patient’s blogs, a stem cell transplant seems like the holy grail of goodbye cytokine storm.
What’s crazy is that other conditions besides mast cell are allowing me to get the transplant in the first place. I had a biopsy o5/19/2022 and the results had so much on them that warranted a transplant, even more the mast cell disease. I know that I should never complain about getting results of any kind on a test, because many people with MCAS might never see an abnormal result in their labs for a lifetime. Yet six years living in epipen hell, I am finally and terrifyingly seeing the lab results on paper, living proof that I have been right all along. That every doctor that has gaslighted me EVER was wrong.
I figured I would try to update about the transplant process daily or weekly depending on how I am feeling. I also plan on getting one of those instant cameras or like mini printers so that I can have more of my life to see around me. A lot of my health care providers think I would do well with a video camera and vlog, but i think I might be too tired for any daily/weekly vlog of my life right now. But who knows? If you randomly see me on YouTube I caved.
I will revamp up this blog here soon, and hopefully my tbr for books. Likely mini reviews of books I am reading and what I am currently reading. If you want to start a book club let me know.
And that is all for today. As I am literally so exhausted from the conversation with my heme/onc. stem cell transplants are a lot to follow and process. I’ll probably write a post on what the procedure entails at some point. Until then here’s to wiping out my immune system and putting one of my siblings back into me.
The Sleepy Chemist 