Thursday, July 13, 2017

How To Overcome The Trauma of Scary Treatment Trials

I fiddled with the orange prescription bottle, repeatedly removing the child proof lid before taking a pill out. I gulped the appropriate dose. Occasionally, this simple act is a success. The medication does exactly what it is supposed to and improves my quality of life.

More often than not though, it is a failure. It does not subside symptoms, causes an unusually rare side effect that occurs in .02% of the world's population, or results in disease progression. The latter is the most terrifying.

When my mouth becomes numb, swelling goes up, and pulse gets so high or so low that doctor's fear arrest, the failed drug is the opposite of a treatment to my body. The distress is only compounded once such a response is no longer an isolated incident, but a repetitive cycle of reactions. There have been medication trials where I am not the same as I was prior to the setbacks. The concept of never returning to baseline is traumatizing and makes one fearful of future treatments.

Then, how does one ever overcome the terror of trialling new treatments?

Calculated Risks

Taking risks is necessary with chronic illness. While it is not practical to be reckless, there is no possibility of getting better (short of a miracle) without chancing a treatment trial.

The triggers are not consistent with my main diagnosis, Mast Cell Disease. For example, I tolerated NSAIDs fine my entire life. I used to eat Mortin and Advil like candy and on occasion took Aspirin. In the flare of 2015, that changed. My doctors and I made the decision to consider Aspirin therapy to combat my insanely high Prostaglandin D2 levels. Aspirin therapy is potentially dangerous to some patients. It is a common allergy even if it can reduce Prostaglandin levels. Despite the fact that I was in a massive Mast Cell Disease flare, we assumed it was a good decision to trial Aspirin therapy because a) my past history revealed I previously tolerated NSAIDs and b) the medication would be specially compounded into the pure drug powder with no fillers and preservatives to react to. Great, right? Wrong. It provoked a cascade of reactions that I did not recover from. This inconsistency may apply to a lesser extent to many chronic conditions. It renders any medication a trial a risk.

Anxiety Relief 

Anxiety is natural. To fear what has previously caused or could cause harm is engrained in human nature. It is how our ancestors avoided dangerous situations. Obviously there is a difference between productive anxiety and anxiety that has destructive tendencies.

Patients with rare, lesser known diagnoses frequently receive the "it is all in your head" accusation from medication professionals. That stigma makes it difficult for it sufferers of rare, invisible illnesses to willingly admit their anxiety surrounding treatment trials, so much so that they repress the distressing emotions. However, recognition and confrontation is imperative in facing the scary, newly implemented treatments.

From personal experience, it is important to remain calm when trialling a new treatment. There is no need to "borrow trouble" or to be convinced of disaster before it comes. Anxiety can produce extra symptoms that mask whether or not the treatment is working. Secondly, staying in a composed state is better for the unfavorable consequences too by making it easier to recover if things go awry.

Mindfulness is described as "the basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us". [ x ]
Excessive anxiety is not conducive. It is helpful to be in tune to bodily signals and signs without focusing ALL attention on potential impending symptoms and reactions. Practicing mindfulness and other techniques is beneficial. 
Keeping occupied is my #1 tip for relieving anxiety and diverting negative attention in nerve-wracking treatment trials. 
It does not mean that the treatment will go perfectly, but staying distracted ensures there are no additional problems created. 
Ways of distraction:
  • Reading
  • Adult Coloring
  • Jigsaw Puzzles
  • Television/Movies 
  • YouTube Videos 
  • Word Games
  • Crafts - Carding Making, Painting, Holiday Decorations
  • Writing 
  • Online Shopping (totally guilty, HA)
  • Skype/FaceTime with Friends/Family
  • Pet Therapy 
  • Baking

Control What You Can

There is little control in life with chronic illness, but there are aspects that we do have control of. Treatment is not to be taken lightly. We have the ability to choose what medications are used in treatment. Patients have the responsibility of thoroughly researching to make decisions and to prepare both the body and mind to give the best chances of healing.

It has been a decent chunk of time between now and my last medication trial. After my out of state appointment with the oncologist who specializes in Mast Cell Diseases towards the end of this month, I am due to try another medication. It will be the last non-invasive option I have yet to embark on. This is definitely not my first venture into uncertainty, nor will it be my last. I am continually learning how to overcome the trauma of scary treatment trials for the hope of improved mental and physical health!

"He who observes the wind will not sow, and he who regards the clouds will not reap. As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything. In the morning sow your seed, and at evening withhold not your hand, for you do not know which will prosper, this or that, or whether both alike will be good." - Ecclesiastes 11:4-6