I won't call you stupid as in the acronym KISS - for "keep it simple, stupid" - but I do have thoughts on how much we pay for our medical care.
*You can NOW READ the INTRODUCTION of Finding Joy with an Invisible Chronic Illness by going to the About the "Invisible Illness" Book link above!
*Finding Joy with an Invisible Chronic Illness is now available as an AUDIOBOOK! The experienced, professional narrator Gary J. Chambers did a superb job.
*NEW: CHECK OUT MY BOOK LIST RECOMMENDATIONS HERE!! My recommendations of the five best chronic illness books for Christians who seek wisdom and joy. Note: While Finding Joy with an Invisible Chronic Illness is written for anyone with a chronic illness, the spiritual content underscores the value of faith and offers several Bible verses.
AN INVISIBLE CHRONIC ILLNESS LIFE
I am a school psychologist, husband, father, and - pertinent to this website - an author who has multiple invisible chronic illnesses.
And an invisible chronic illness is a beast. On top of draining you physically, a chronic illness can impact all aspects of your life ranging from causing financial hardship to harming your relationships to dampening your spirits. Try to be cheerful when you have this unremitting “monkey on your back” known as an invisible chronic illness that constantly demands your attention 24-7. Needless to say, it’s easy to let yourself and others down.
Plus, your family or friends can't see your illness, as it's invisible, and they may not understand. Most with an invisible illness are familiar with “advice” ranging from “stay positive” to “you look good” to “Have you tried ___ for your condition?” Yup, you probably have, and it didn’t work.
On top of that, best wishes in accessing (and maintaining) high quality medical care when you are too tired to even take care of yourself.
Welcome to the world of an invisible chronic illness. I should know. I suffer from multiple invisible chronic illnesses, including a primary immune deficiency disorder and bronchiectasis.
But it doesn’t have to be this way - for you or for me. While I am far from cured of my illness, I still maintain a fulfilling life and experience ongoing joy, peace, and happiness. Because of good medical care, extensive self-educating and self-care, and a supportive family, I effectively manage my chronic illnesses. But I didn't want to be the only one to benefit. It was my goal, in turn, to give back to others by doing what I love to do: authoring books on these conditions.
Thank you for stopping by. I hope that by visiting this website and blog, and/or by reading my books, you will find yourself encouraged and your day just a little brighter.
WHY WAS FINDING JOY WRITTEN?
Finding Joy with an Invisible Chronic Illness has been written in part to address the following problems chronic illness patients confront:
1) the emotional challenges that stem from living with an invisible chronic illness and the subsequent high rates of depression;
2) the loneliness many with chronic illness experience, misunderstanding from others, and ensuing relationship difficulties;
3) the diagnostic and prognostic confusion, and difficulty accessing and maintaining high quality healthcare;
QUESTIONS FINDING JOY ANSWERS
- How can you experience those good thoughts and feelings, enjoy life at its fullest, and de-stress when faced with constant, unremitting physical suffering?
- How can you enhance your relationships, find support, respond to the naysayers, and possibly even help them understand you and your illness?
- When seeking medical care, how can you get the answers you deserve, and access and maintain quality healthcare?
As a school psychologist and patient, Finding Joy integrates my professional and personal insights to advocate a holistic approach to managing chronic illness.
WHAT FINDING JOY OFFERS
Finding Joy is an A-to-Z guide that critiques the literature and empowers the reader with:
- Positive psychology techniques. These range from self-compassion, positive reappraisal, positive self-talk, and pacing to positive thoughts, emotions, and behaviors such as optimism, humor, and volunteer work.
- Stress-reduction methods. These include tools such as mindfulness, breathing exercises, simplification, and (therapeutic) journaling.
- Proven therapies. Examples include cognitive behavior therapy (CBT), dialectical behavior therapy (DBT), and acceptance and commitment therapy (ACT).
- Effective communication strategies and their impact on relationships and even the ability to access quality healthcare.
- Numerous tips to both access and maximize your access to high quality healthcare.
- Important considerations for the loved ones of the chronically ill, so they too can know how to best support their loved one and take care of themselves in the process.
- Finding Joy with an Invisible Chronic Illness: Proven Strategies for Discovering Happiness, Meaning, and Fulfillment (2021)
Having Nasal Surgery? Don't You Become An Empty Nose Victim! (2007) (Independent Publisher Book Award)
- ¿Cirugía nasal? ¡No caiga en las garras del síndrome de la nariz vacía! (2015) (Spanish Translation)
This may seem rather obvious, but I think it is worth repeating, particularly as the warm, humid air arrives to the Northern Hemisphere: drink lots of water and stay well-hydrated. Remember, water is called the universal solvent as it dissolves more substances than any other liquid. It is important for digestion, metabolism, and kidney functioning, to name a few. It is important to life. And it helps to keep us hydrated.
Dr. Murray Grossan's book entitled The Whole Body Approach to Allergy and Sinus Health is an excellent read. This publication offers numerous up-to-date natural strategies for good nasal health.
Consider using a humidified CPAP. It took me 3 months to figure out the right pressure and right mask, but these 12 years of CPAP use have been extremely well-worth it and it has enhanced the quality of my sleep specifically, and life in general. If you can tolerate it, go for it.
I have tried many supplements over the years and, to be totally honest, I found most of them to be useless and a waste of money. Plus, I believe diet is far more important – and has a much bigger impact on our health - than supplements.
Unfortunately, the current plight for many ENS sufferers is that we remain very sick and completely disabled with our chronic debilitating symptoms, we suffer alone, often with marginalization of our concerns from family, friends, and even the medical community who initially caused ENS. It is very hard to make people who do not have ENS comprehend the gravity of our situation, even those people who seem to know us best. Research has shown that chronic sinusitis has been considered to impact one’s quality of life similar to having congestive heart failure, low back pain, or rheumatoid arthritis. But what impact does ENS have on quality of life? It has a far more debilitating impact on our quality of life than chronic sinusitis! Currently available treatment options - implants and injections - offer some help and hope, but they are unfortunately not helpful enough; after getting treatment, most ENS patients still remain highly disabled, even if they receive some improvement to their condition. Moreover, the existing treatment options require great expense and travel, as insurance does not yet recognize the condition.Make no mistake: great progress has been made in recent years with respect to both treatment options and understanding. A few courageous physicians have offered us promising treatments for which we are extremely grateful, and we do believe the tide is turning with respect to a better understanding for ENS. Yet, despite this progress, we still have a long way to go. There is still too much ignorance out there and too little help. Consequently, it is more important than ever for ENS sufferers to bond together as a community and united front. We must be: Organized. Unified. Empowered. With Purpose.
I think those who battle invisible chronic illnesses, such as empty nose syndrome, are WARRIORS.