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.
I am currently in an insurance battle for an approval for my rare disease to be treated via a stem cell transplant. I am chronically ill with many different diseases, all of which can be connected as comorbidities.
Now what do I mean when I say comorbidities? A quick google search will give you the definition:
“the simultaneous presence of two or more diseases or medical conditions in a patient.”
But what does that actually mean? Well we know that there are many different systems in the body. Over time we have named these different systems individually such as our nervous system, the gastrointestinal tract, endocrinology system, musculoskeletal system, cardiovascular system, etc. This is why there are so many sub-specialties in the practice of medicine.
Say you have a headache or chronic migraines, you would want to see some sort of head specialist like a neurologist. Or if you break a bone you would want to see the orthopedist (bone doctor) or a surgeon who works on bones. Having trouble with digestion? You would want to find a gastrointestinal doctor or a nephrologist. Heart or blood pressure problems? A cardiologist would likely be your first stop to modern medicine help.
So as a society we have pulled apart the human body into these sub-specialty groups in order to better focus on a specific problem or issue that the patient is having. This system has worked well for the majority of the population for thousands of years. Because the majority of the population has a very easy time being placed and sorted into set boxes.
Many people accredit Aristotle to be one of the first scientists of the world. And I disagree with this statement personally. Here’s why: he was a great organizer, he was a great categorize-r. He put like things with like things. Where is the science in that? All he did was classify groups of things.1
Do not misunderstand me here though; as the classifications of everything Aristotle put together was an enormous feat for the time as his work spanned all human knowledge today. I am simply saying; classification and categorization don’t mean much when we live in a world that does not fit into one box. Especially with the practice of medicine. There is no exact science in medicine.
I boldly say that there is no exact science in medicine. This frustrates and ruminates in our heads. As patients, as medical students, as doctors, as insurance company agents, as simply being human. It is called practicing the art of medicine. If medicine was an exact science and each category we have placed our body parts into worked individually and independently from one another, then maybe we could call it a direct science? Yet we all know that to be an untrue statement.
For example: the brain uses glucose as a source of energy. In order for the brain to have glucose to use as energy, you have to eat food – the glucose. This connects the gastrointestinal tract with your head. This type of headache is cured by eating or drinking food.
Now, comorbidities with disease kind of work like this. Because the entire body does NOT exist in nice little separate boxes, but constantly intertwining in ways that we are still learning and discovering about.
Here’s a great video on my disease that can go further into detail of what I mean on this:
So as in hopes to have a better picture, Dr. Saperstein, world renown expert in the field of Ehlers Danlos Syndrome, breaks apart the pieces of a patient that has this condition. As we can see; the root cause is thought to be a defect in collagen production. That default in collagen affects more than one system in the body. Often multiple systems are affected but not connected right away because of our categorization system. Comorbidities do not fit into one box, and may seem totally disconnected from one another.
So tying this all together with me: I am a rare disease Ehlers Danlos Syndrome patient. I have nearly every comorbidity there could be for this condition. One extreme comorbidity that has disabled and destroyed my life is the condition of Mast Cell Activation Syndrome. For me, this has been so life threatening I have used countless epipens, been in multi system organ failure, and almost lost my life daily depending on what I put into my body. We have tried so many treatments at this point, and seeing world renown hematologist and oncologist and allergist to try and control my disease.
Hence the treatment of stem cell transplant being on the horizon, and me currently fighting insurance for an appeal to give me one. This is extreme treatment for a comorbidity of a disease we still know so little about, making it difficult for someone to want to cover such a “risky” procedure. I would be the first for mast cell activation.
So until we get this appeal I will be blogging life again. The ups and downs of my rare diseases, and explaining more about comorbidities of the different body systems.
Because this is worth fighting for. This is worth the research and education. If nothing else may my medical journey help prevent the severity or find a cure to all the comorbidities us rare zebras live with every single day.
The Sleepy Chemist 