Sunday, March 25, 2018

Glimpses Into Chronic Illness: Why Can't I Get Better?


Life can throw challenges our way in which we all experiences personal battles, but what happens when you feel indefinitely wedged in a troubling situation?  People who have a chronic illness or invisible disability often feel stuck in their debilitating symptoms as well as their feelings of guilt and grief over the lack of improvement.  When you come down with a cold or a virus, you may feel rotten for a few days or even a week.  You may go to the doctor for a prescription or take something to ease your symptoms until the virus takes its course, and then you move on.  When you struggle with a chronic condition, it is like being stuck in that place of feeling miserable for months and sometimes years at a time. Your specific condition may not have a cure or effective treatment.  Other people may not understand why you can't take a pill or something to get better because they are uninformed of the nature of your specific condition.  

 When people ask me about my condition, I'm not always sure what to say because it is not the result of one specific disease or illness but complex underlying layers of infections, pathogens, and autoimmune triggers. I have had multiple diagnoses, and sometimes I am focusing on a certain aspect of treating my condition at that time.  I do appreciate those who have taken the time to ask and truly care and want to understand my world.  About every 3-6 months someone approaches me about a product or supplement that they believe I should consider using to heal my condition.  I try to be open to suggestions and enjoy hearing success stories about how people have improved their health with a product or treatment.  I encourage people to take charge of their wellness and be proactive with what works for them.  Unfortunately, there is not a "one size fits all" treatment, drug, or therapy that works for everyone.  This is especially true with conditions like Lyme disease, Mast Cell Activation Syndrome, and Chronic Inflammatory Response Syndrome (CIRS) where each person's tolerance to therapies can vastly differ.

When someone approaches me about their product, I take the time to hear them out and listen to their story.  I appreciate the fact that they cared enough to want to help.  Living with a chronic illness is a very lonely place to be because most aren't able to enter this world of navigating life through a fragmented lens of pain and struggle that impairs daily functioning.  Having those brief interactions with others in my church and social network provides a way to connect with them and to give them a glimpse into my life.  I am gracious to those individuals and thank them for taking the time to reach out to me.   Then, I will politely explain that I don't take anything without very slow/careful consideration and only after running it by my practitioner who tests everything I take for compatibility with my fragile system.   Occasionally, the individual will tell me that they don't understand how detoxing or using a certain vitamin or supplement can be unsafe because they are "natural."  "Catch all" supplements or protocols can be great for many people who are trying to take charge of their health, but can be potentially dangerous for someone like me.     After hearing that person out, I usually explain that I have multiple allergies and sensitivities from a chronic inflammatory condition.  Because I am genetically unable to detoxify specific substances on my own, I must be extremely cautious with what I put in my body.    Every treatment that I use is very deliberated and specific to my individual condition which has been tested through a series of labs and bio-resonance testing in the clinic.  Treating these complex layers is a very slow and painstakingly deliberate process that can be overwhelming to sort through, and I will set boundaries with those who are more persistent in encouraging me to use their products.

Because the primary symptom of my condition has been a balance disorder with chronic vertigo, someone periodically either messages me or posts on my Facebook page an article about a Colorado doctor who found a "cure" for vertigo with her simple fix.  Wow, that is amazing, right!  This article is a little misleading because there are several types of vertigo and the article addresses the most common form of vertigo, Benign Paroxysmal Positional Vertigo (BBPV).  Unfortunately, my vertigo is a result of damage to the balance center of the brain and nerve tissue which is common for people with MS, chronic neurological Lyme, and mold toxicity from CIRS.  For me, vertigo is my body's way of telling me that it is exposed to something it doesn't like.  Some call this symptom being the "canary in the coal mine."  When I get these messages/posts, I usually thank the person and leave it at that.  If it is someone I'm close to, I will take the time to explain why this treatment would not cure my vertigo.

When these situations occur, I perceive it as the person caring about me and wanting to help.  I wish there was a cure or easy fix but life often doesn't work that way.  The day to day battle is weary to the body and the soul; however, I am a fighter and I never give up my pursuit for wellness.  An amazingly compassionate and supportive medical team, the support of my network of friends and family, and my close relationship with God has provided an anchor for me to stay strong and keep on the fight!  I believe that every aspect of life has a purpose that will not be wasted, and I am determined to use my experiences to reach out to others on social media and with my blog.  It is a hard place to be, yet filled with momentary blessings to be used for a greater purpose.



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JOYFUL TREASURES:  Joy is a Daily Choice!

James 1:2-3 "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness."

 When we are hurting and battle weary, we can find hope in God's promises.  Sadness and sorrow is for just a moment in comparison to the eternal reward we will one day experience.  Joy doesn't come easily but IS possible by God's grace as we make a daily choice to believe and trust in his word.  I pray my hurting brothers and sisters will be able to glimpse out of the fog of chronic illness into the light of eternal glory and find joy in the loving presence of the Prince of Peace!

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