Visible Heroes 2018
- randyordonio
- Sep 11
- 9 min read
Invisible Diseases Day of Visibility June 6, 2018
PATRICK PLUM
Invisible Diseases Visible Hero 2018, PATRICK PLUM
Meet Patrick, a deeply determined man who has surprised many with his pure honesty and ability to find humor amongst suffering. He has earned his Visible Hero award with shining colors. See his own words about his story below...
My name is Patrick Plum, and I have chronic Lyme disease. You can't see it on the outside and most people can't tell unless they look closely. I, however, have not had a moment where I didn't feel a symptom for over 6 years. Here is my story:
It was summer of 2012. I was living in the Midwest of the United States a few months before my 33rd birthday.
I had my dream job as a pilot for a major airline for 5 years. I'd been dating a girl for two years and had just bought an engagement ring. I was in excellent shape. I had just earned my first degree black belt, was teaching boxing and working out 2 plus hours a day. I was an avid motorcyclist and enjoyed sharing this passion with others as well as teaching people to ride. On my days off from work I'd often volunteer taking friends and their kids on single engine airplane rides and taught flying part time at a local airport. To be cliche, I was living the dream. My hard work was starting to pay off. One day, I looked in the mirror and saw a big "yellow bruise" on the left side of my chest. It didn't hurt, so I didn't think much of it. Little did I know, this rash was about to change my life...
In August I had just returned from a trip to Jackson WY. I'd also been spending a lot of time at my dad's cabin in western Wisconsin. One morning, I woke up with a pounding headache and what felt like the worst hangover I had ever had. I tired easily and even though I continued to work out, Id get weaker. I thought I'd been working too much or was experiencing jet lag from jumping time zones frequently, but no matter how much I rested, it got worse. Then came a myriad of other symptoms. Digestive problems, swollen glands, fatigue, malaise, muscle stiffness and several others.
I saw MDs, chiropractors, NDs, nutritionists, dentists, physical therapists, infectious disease specialists, etc. After 36 doctors, including some very well known specialists, they found nothing major. Low magnesium, low vitamin D, high Mercury, and high cholesterol. Several doctors attempted to steer me toward a mental health diagnosis, but I knew my body and wouldn't accept that. I decided to seek out a doctor who just treated Lyme disease, a LLMD. I fit every symptom of it. She asked if I had been tested for Coinfections which, like most people, I had no idea what that was.
In April 2014, I had an answer. I tested positive for several tick borne infections. Since I had what is considered "chronic" or "late stage" Lyme disease, I was told recovery would not be short or easy. This was an understatement.
In May 2014, I made the decision that in order to fully fight Lyme disease head on, I needed to temporarily hang up my wings. My company has been a Godsend and told me to come back whenever I felt better. In May of 2015, I went public to friends, family and over social media.
It's been the hardest 6 years of my life. Some of my symptoms resolved quickly and completely, others linger. Some of my friends and family amazed me with their compassion, others shocked me with their lack of loyalty. I continue to ride the roller coaster of symptoms. Above my counter with all of my meds and supplements, I have a picture of myself happy, healthy, and in my uniform at work. Since this is my goal and gives me something to work toward. In the mean time, I've found a purpose in being an advocate for others suffering from Lyme disease since I know what they're going through. The crushing loneliness and isolation, the horrifying physical symptoms, and fighting the fear that we may all be stuck this way. All while seemingly fighting this on our own with a large percentage of "modern medicine" ignorantly and foolishly turning their backs on us.
Since doctors are unknowingly poorly educated on this subject, and some don't believe in chronic lyme disease at all, I've made it one of my goals to educate and spread awareness. Ive used my teaching background as a mode to educate. Some of my posts and videos are meant to hit people deeply on an emotional level. Others are meant to entertain with scientific fact mixed in with humor. Since most people won't get it until they "get it" (get infected), I have also made it one of my life goals to be a voice for the millions senselessly suffering in silence due to medical ignorance with Lyme disease. I have vowed that the rest of my life will be used to try to change this. I'll continue to do this long after I'm symptom free and have my "life back."
That tick attached itself to the wrong person! ;)
I told my full story in a podcast with a functional medicine doctor. You can listen to it at:
Although, I firmly believe my story is still being written. Just like it is for you!
There is healing from chronic Lyme disease. Don't believe me? Keep watching!
You can reach me and see my work on:
Facebook: Patrick Plum
YouTube: Patrick Plum
Instagram: @Patrickplumlymewarrior
www.btbha.com podcast 23, 57, 112
NIKKI - NIKKIJO TYRELL
Invisible Diseases Visible Hero 2018, NIKKI - NIKKIJO TYRELL
NikkiJo is a highly accomplished singer. She has performed in venues big and small. But when she became ill, everything changed for her, and her fighting spirit became the beacon of hope for herself and countless others. She turned her struggles into songs of valiant bravery and tender spirit. Please hear this Visible Hero's music-filled story in her own words...
I think one of the keys to surviving chronic illness and loss is to focus on what you can do, rather than what you can't. Also to have an outward focus where possible, rather than inward – thinking about what you can continue to contribute to the world and to others rather than on all that is lost.
For me, that is why I continue to strive to sing and share my music wherever possible. Sometimes it can be months or years before I manage to share any songs again and, when I do, it is almost invariably without any practice, no warm ups, just a few minutes where I can pull on all my reserves to manage. It is not easy for me to share music in such a state – I am a perfectionist by nature – nor is it easy to accept I cannot do more than this, however I have learned that even in its imperfect form, my music can bring joy and healing to others. That is my reason for doing this, that is my 'why'.
Chronic illness and suffering can drive you one of two ways – to bitterness and self pity, or – on the flip side – to a place where you have even more empathy and awareness for the plights of others. When you know suffering so greatly yourself, it can create an internal commitment, an unwavering drive to do anything you can to help alleviate the pain of others. If, via my music, I can bring some moments of joy and hope to other people, especially those facing struggles of their own, then it is worth everything I go through to record even just one song.
People often think or say 'oh you're singing, you must be feeling great'. Often it is the complete opposite. It is a fierce determination to rise above this illness, to refuse to give in, to find solace and joy for even a few moments. Most people would not be able to comprehend what myself – and others – go through to win even just these few moments of success, and would not realize that often I am so unwell that I cannot even speak, let alone sing or play piano. Many of us with invisible diseases lose our voice – literally and metaphorically – and become hidden from the world. That is what also drives me forward: Even though I would be doing so much more if I were healthy, if I do what I am able, those parts of me can never then be lost, and will not be invisible no matter what the illness throws at me. I sing to show that even though we are sick, we still have dreams, talents, ambitions. We strive to achieve and overcome despite all odds, we still have so much to offer. I sing for those who cannot speak up for themselves or be heard, and for those who have lost the battle to invisible diseases.
One of my recent songs, 'Little Bird' was a tribute to one such warrior. I made a promise to my dear friend, Renee, to whom the song is dedicated, that I would continue to fight, continue to do all I could to recover and to sing in her memory. I am not yet recovered, and it took me four years to be well enough to even get one take to record this song, but I remain determined to honour my promise to her, and to honour all those suffering invisible diseases. You are seen, you are remembered, you are valued. Hold onto hope and, as Renee used to say 'hold tight to every precious moment'. If my songs can give you even just a few moments of relief, distraction, joy and/or hope in the darkness, then I am humbled to be able to do that for each and every one of you.
NikkiJo Tyrell
Follow NikkiJo at:
SoundCloud - https://soundcloud.com/theonlynikkijo
JASMINE SZANTYR
Invisible Diseases Visible Hero 2018, JASMINE SZANTYR
JASMINE IS AN IMPASSIONED WOMAN, USING HER OWN LIFE EXPERIENCES TO LIFT OTHERS THROUGH HER VERY HONEST BLOG AJASMINE SZANTYRND SOCIAL MEDIA POSTS. MANY PEOPLE HAVE FOUND STRENGTH AND COMFORT FROM HER PERSONAL STORIES OF SELF-SURVIVAL. SEE WHAT SHE HAS TO SAY, IN HER OWN WORDS...
I’ll start with a disclaimer—I think my blog name may be a little misleading. I am not here to pill shame and would never promote doing so. I understand that drug-free is a luxury that most of us cannot financially or physically afford. In all honesty, I became Drug-free Spoonie because I didn’t have a choice. I went undiagnosed for a little over 2 years, which is said to be average for people with Lyme. During that time my health was slowly deteriorating, but since I didn’t have a diagnosis I could not be treated or prescribed with anything. I started doing research and treated my symptoms holistically.
In my research I found some of the possible dangers of long term prescription drugs and exposure to chemicals. I realized that if I wanted to live my best life I needed to make a lot of changes. I also started switching to natural products in my home, including toxin-free beauty and self-care. It is far from easy, and because of that I decided to share my journey with the world.
January 2016 I was bit by something (which I now believe was a tick). I never got it checked out because it was winter and I hadn’t spent much time outside so I assumed it was a spider bite or something like that. A few months later I started having flu like symptoms and those symptoms never went away. Some days were worse than others but overall my symptoms progressed. I had been tested for Lyme but it was negative, so I was referred to a rheumatologist. I jumped around to a few different doctors after being told it was a mental health issue, food allergy, etc. In this time my symptoms took over my life. I had to give up a career that I loved and was successful in. I lost many friends and became distant from family. I was in too much pain and had far too much fatigue to spend time doing things that I love. I decided that if I wanted to get better I needed to do research and be an advocate for myself.
April 13th 2018, the doctor called with my diagnosis: Lyme, Babesia, Bartonella, Q-fever, Candida, Mycoplasma Pnuemoniae & Epstein Barr. The doctor’s appointment and tests needed to get this information were almost $1500 to POSSIBLY get a formal Lyme diagnosis (and I do have insurance). I had multiple doctors believe I have Lyme and co-infections but of course the test was always negative. To put into perspective why I though the risk is worth it, my previous diagnosis was Chronic Reactivating Epstein Barr, and 2 years & 6 doctors later (including 11 ER visits) no one had helped me. This is something that occurs with many people with Lyme, as the test commonly used is not accurate and many doctors believe the Lyme cannot be chronic.
This is why awareness and advocating is so important. Not only do I share my story to help those who are looking to live a more “natural” lifestyle, but to raise awareness about the dangers of Lyme and the trials and tribulations of those who are diagnosed late stage. If I had this information when I was bitten, I would probably be in remission now. If I am able to help even one person recognize that they may have been bitten by a tick, it would be a dream come true.
Everyone keeps saying they’re “sorry” to hear about my results, but I am RELIEVED. The moral of my story is to never give up. You know your body more than anyone and the best way to get answers is to be an advocate for yourself. Always speak up and be honest about your symptoms despite negative feedback. It may have taken me two years to get here, but now I’m on the road to remission.
Follow my journey at:
Instagram - @drugfree.spoonie
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