Tuesday, May 2, 2017


As a chronic illness patient, I do a lot of waiting. I wait at appointments. The unenthused tone of the receptionist seems to call every name but my own. I wait on my weekly shipment of home health infusion supplies, while I anxiously anticipate the currier's knock on my door from the spot on the couch. I wait to trial new treatments. The medical team and I ponder the possible outcomes of each risky medication. And I even wait, God willing, to get better.

It is now time to consider the next treatment options. My weight is finally up ten pounds, praise God. Since the number on the scale is not critically low, losing a few pounds from a treatment trial gone awry would not immediately produce devastating effects.

Earlier this week I stepped out on a limb, so to speak. I tried CBD oil. I have heard and witnessed the wonderful benefits CBD oil has on mast cells that are out of control. For those unaware, CBD is a cannabinoid in the cannabis plant. Extracting the oil has amazing medicinal properties. CBD, unlike its THC counterpart, is non-psychoactive. It is does not induce a “high.” It is legal in every state, as it is hemp.

There are numerous studies. [ x ] Dr. Afrin mentions it in his book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity:
The mast cell surface features (inhibitory) cannabinoid receptors, making me wonder whether at least some of the chronically ill patients out there who claim that the only thing that makes them feel better is marijuana might be unrecognized MCAS patients in whom THC’s binding with the cannabinoid receptors on their dysfunctional mast cells leads to a quieting of the activity of those cells and thus a lessening of symptoms.
About a month ago, I purchased CBD oil from Charlotte's Web. It is mixed with olive oil. CBD oil is the second to last non-invasive option I have not yet trialled. It is not be a miracle cure, but any relief is welcomed. Regardless, I had hope. The plan was to initially trial the oil externally. That way, if I reacted to the oil on my skin, I could avoid a major incident from ingestion.

This week I trialled it on three separate occasions. It is rather depressing that I reacted to two out of the three attempts with the oil on my skin. Thankfully, I did not ingest it.

I can still experiment with different brands that have additional ingredients besides olive oil. While I am not totally giving up on the oil, it is disheartening that it did not work like I expected it to.

Before I actually used the oil, I had it for over a month. I had been waiting for the perfect opportunity to trial it. Miscellaneous factors influence levels of reactivity. I did not various circumstances to determine whether I tolerated it or not.

The chronicles of CBD oil is only one example of the frustrations of waiting in the life of chronic illness. The majority of the waiting is unavoidable. Appointments do run on a schedule because there are more sick people in the world than just myself. The home health company have many houses to deliver to on a weekly basis. And to elude a life threatening situation, I have to make practical decisions about if or when to introduce a new treatment.

All of the waiting feels like a waste. It is as if life is contingent on my health. To an extent, that is true. Chronic illness causes quite a delay in plans and I frequently fail to live in the interim. Instead, I must embrace life to its fullest potential in the midst of the waiting.