Living with Ehlers-Danlos and Mold Illness
After waking up partially paralyzed one morning in July of 2014, with electrical shocks rolling throughout my body, I knew nothing was ever going to be the same again. My mom flew me home to Cleveland so that I could get specialized care at The Cleveland Clinic and University Hospitals. We chased symptoms for a few months, then in November of 2014, I was diagnosed with EDS, Ehlers-Danlos Syndrome type III. This was known as the hypermobility type of this connective tissue disorder. It hurt so much to walk, that I had to be rolled into the hospital in a wheelchair. I was in excruciating pain all over my body and I couldn’t walk on my feet because it felt like my soles were embedded in razorblades. Doctors had been chasing symptoms since July of 2014 and I had endured everything from 8 hour ketamine drips to pudendal nerve blocks and pelvic floor botox treatments. The botox and nerve blocks brought me great relief but the nerve blocks always wore off and I had to have several rounds of botox treatments to get my muscles to finally relax and stop spasming. I was told I had to keep moving and walking and start physical therapy and this news made me want to scream. How was I supposed to walk around and be physically active when that was what skyrocketed my pain? After all, I had also been diagnosed with fibromyalgia, chronic fatigue syndrome and chronic pain syndrome, which is basically the medical community’s way of saying, “So, hey, we acknowledge you are in a crapload of pain all the time, but we have no idea why, or how to stop it. Here are some super weird drugs that might help you and/or make you worse at the same time. Good luck with that.”
During this time, my endometriosis had returned with an unmatchable vengeance and I started making and bursting ovarian cysts again like it was my job. It was the WORST pain… barely survivable. Bursting an ovarian cyst hurts more than passing a kidney stone. I know, I have done both. My menstrual cycles were so bad, they were sending me to the ER. Twice a month, It felt like an alien with long talons was trying to claw it’s way out of my uterus. Sometimes, I would just lose consciousness and pass out. So, to remedy this, they added hormone therapy to the mix to turn everything off. Finally that specific pain had gone away, but then I was jittery and couldn’t sleep. Cool. New problems.
I was also now living in a constant state of motion sickness and nearly hurled every time I moved my eyes. I could not watch tv, read my phone, walk without falling down or tolerate temperatures above 73 degrees. I was diagnosed with Dysautonomia, which meant my autonomic nervous system was fried and doing all sorts of bizarre things. The doctors also thought I might have POTS, Postural Orthostatic Tachycardia Syndrome. This caused doctors to chase my symptoms for a few years. It was hell.
I requested a heavy metal toxicity test since the doctors were running out of ideas, and sure enough I had lead, mercury and organic arsenic toxicity. (At some point, most chronically ill patients become their own doctors because no one is giving them answers.) This led to more weird symptoms and explained some of my Dysautonomia and cognitive decline, or so we all thought. My memory had gotten so bad over the years that I started to forget how to play instruments, my musical scales, or be able to read music. This is very humbling for someone who was once first chair violin in the orchestra. One day, when I was on a motorcycle, I turned left and suddenly couldn’t remember which was the brake and which was the clutch. It was then that I realized something was seriously wrong with me and I never got on a bike again. I became very secretive about my memory loss problems.
After unsuccessfully trying to detox from heavy metals and toxins, I religiously clung to my EDS support group for support and any new ideas or information anyone could provide. My POTS had become so bad that I couldn’t move my eyes without getting a migraine, couldn’t drive and couldn’t go outside because of the sun and heat. My quality of life was slipping through my fingers and I was bedridden for weeks at a time. I even started to write out a will. The pain I would feel in my joints and throughout my entire body was unbearable most of the time. No drugs made me feel better and I was losing the will to live. I just stopped caring about things. I passed my tilt table test from both neurology and cardiovascular (they conduct different tests). I still had no answers to why I felt like I was dying. I had a blood volume test done and it turned out that I only had 85% of the blood in my body that I was supposed to have and I had Hyperkinetic Heart Syndrome. Finally! A real diagnosis! But… there was no treatment. One of the doctors thought to blast me with saline IV’s and it almost killed me. A nurse had to intervene and pull out the IV and reprimanded the doctor herself for not having a full team in place or allowing a cardiovascular expert to be involved. I learned later that Neurology and Cardiovascular doctors posture with each other constantly and the one who really suffers is the patient. I started to lose my faith in doctors. After all, I spent years only eating organic food and going to naturopathic doctors and look where it got me. Herbs and acupuncture cannot heal everything especially in the midst of the high toxicity we live in. More and more people are experiencing dysregulation of body functions and are in need of some type of therapy or re-education whether it is for the psyche, nervous system, or muscle groups.
After suffering for years with POTS symptoms, I was introduced to a chiropractor who was trained in what is known as Functional Neurology. It is totally different from regular Neurology which is designed to look for disease, not train function (as a generalization). She had me come in to do an assessment. At one point, she had me march in place with my eyes closed, and when I opened them, I was clear across the room. I couldn’t believe it. I had a bunch of neurological exams and they had never done tests that she was doing. She explained that the part of my brain that is responsible for knowing where I am in space was affected. She knew retraining techniques and told me not to worry. She also asked me if it would be ok to give me a POTS attack. I was like, “WHAT?!” She explained that she needed to check and see if my “POTS attacks” were stemming from the vestibular part of my brain. Sure enough, she spun me in a chair and rolled me down the hallway and I almost threw up and was trying to grab the floor. She sat me up, had me do some eye tracking exercises and then put some red glasses on me. Within two minutes my POTS attack had completely gone away as if it never happened.
“HOW DID YOU DO THAT?!!” I shouted. For these attacks would take me down for days at a time where I couldn’t do anything. They would mess me up so badly, I couldn’t even cry. “Well, I have some really good news for you,” she said. She explained that due to my 15 concussions (don’t ask), and various other factors, the vestibular part of my brain needed to be re-calibrated with training exercises and that this would stop the “attacks” from ever happening again. Within two months of working with her, doing my eye-tracking and balancing exercises regularly and wearing my red glasses… I was cured. No more attacks where I had no balance and lived in a state of motion sickness. It was a miracle. I couldn’t believe it. Some of my dysautonomia symptoms even improved after working with her. I am SO GLAD I kept seeking and refused to give up. And thank God for the red glasses because I take them with me everywhere and put them on when I start to feel stressed or overwhelmed and they soothe my nervous system. I didn’t realize that watching tv, typing on the computer, or reading would sometimes send me past my neurological threshold and I would start to pass out. I just thought I always had to take naps, when it was really all the eye-tracking exhausting my brain, which in turn would let me know to lie down and close my eyes. Now, I put my red glasses on and rest for 5-10 minutes, then I’m fine. My brain tells me when to take the glasses off. Sometimes I just need to lay down for 5 minutes and it resets me and I’m good to go.
I have now learned to always listen to my body.
It was around this time I met a new member of our EDS group who explained that she had been a perfectly functioning, highly flexible yoga teacher for years and now suddenly she was experiencing excruciating pain which resulted in an EDS diagnosis. Several people started barking at her that she would never be able to teach yoga again and had to stop trying to be so physically active or she would hurt herself. I watched the light leave her eyes. I went over to her and told her not to listen to anyone, because none of them were doctors and none of them knew the intricacies of her situation. The light came back into her eyes and we became friends. People were trying to be helpful but they were processing all the information through their own personal stories and fears.
This friendship proved to be pivotal in my recovery story, because like me, she refused to settle and give up her life just like I refused to be in a wheelchair. We stuck together and compared notes. It really was like we were full time medical researchers. Then one day, she went to see a doctor in the Functional Medicine Dept. who ran tests on her to determine if she had mold illness from toxic mold exposure. Sure enough, she did. (It is a very complicated testing process and the doctor I had seen in Functional Medicine did not even know how to test for or treat mold illness. But my doctor had come from an Integrative Medicine background not Functional Medicine background…. big difference.)
My friend was advised to have a professional mold expert inspect the house. Sure enough, even though their house was brand new, the contractor had cut corners and now there was black mold everywhere as well as throughout the air duct system and it was all invisible to the naked eye. My friend and her family lost everything. Thousands and thousands of dollars in loss and the insurance refused to cover one cent of it. The previous owner even protected himself from being sued no thanks to the laws of the township they lived in. My friend and her son had become so ill, that they nearly died, and no one seemed to care. It was devastating.
I asked her how long after she moved into that house did her pain begin and she replied, “pretty immediately.” That made the lightbulb go off. I said, so you have been highly flexible and really strong your whole life until you moved into this house and now you suddenly have EDS? “Yep,”she replied. Hmmmm…. I thought. I needed to go to her doctor and get tested. After all, I was a nationally competing figure skater for years and didn’t have these problems. But then I also realized, I also had years of cardio training in a refrigerated environment while wearing compression wear to hold everything together. I had great difficulty with double jumps and spins because my brain would freak out…even then. I started to see patterns that stemmed back to adolescence and extended well into my adult years.
I decided to go to my friend’s doctor and get tested for mold. Sure enough, the tests came back positive. How can I have mold illness? Where did it come from? How can I have so much toxicity? I mean, am I just collecting it from everywhere? Actually, the answer was yes. My doctor had me read a book called Childhood Disrupted which explained how female trauma survivors have lower functioning detoxification pathways than women who have not experienced developmental trauma or even men. Apparently, testosterone protects the integrity of the body’s detox pathways, and estrogen can compromise it. There is a really strong chance that this is why we see so many more women than men with syndromes like fibromyalgia and chronic fatigue syndrome. In recent years many people have figured out that their “fibromyalgia” was actually mold illness, or CIRS (Chronic Inflammatory Response Syndrome.) I know that for me, when I received this information… it changed everything. I started to put the puzzle pieces together including my history of abuse.
I came from an upbringing of incredible levels of violence, alcoholism, drug abuse, molestation and incest. I barely survived it and it turned me into a very angry, very vocal, punk rock teenager. Punk rock saved my life and I was accepted into a bigger group of misfits that had all survived serious shit and were willing to stand up to the system that never protected them. I found purpose and strength and decided from then on out, I was never going down without a fight. So, just because an authority figure, doctor, teacher, therapist etc said, “This is the answer, and this is what you must do,” does not mean that I ever took that as infallible. I learned to just nod and blow it out the other ear, and thank God for that. Because if I had listened to every single thing my doctors have said and followed their instructions to a “T”, I probably would have never walked again, AND I would be missing some female organs. I have learned to listen to an individual who is an expert in their field, especially if they tell me something I don’t want to hear, for they have experience that I don’t have. But, I have experience THEY don’t have, and at the end of the day I follow my gut.
I knew that my traumatic past was most likely going to drop kick me into a never-ending life of therapy, but I did not know that it would compromise my body’s ability to get rid of toxins such as heavy metals and mold. It’s not like I was running around licking the walls in old houses or sleeping in drain pipes. The final math indicates that I have been collecting these toxins throughout my entire life and the levels have been building for years. This build caused a lifetime of unexpected hospitalizations and procedures to treat seemingly random symptoms and illnesses. I have been in and out of the hospital for years for the most unimaginable shit ever. This became a huge toll on my family and anyone I ever tried to date, so I learned to just stay out of relationships. Some of my friends could not understand or even deal with my random illnesses and they simply disappeared. I really learned who my real friends were. Thank God for real friends. There is real value in knowing that you can call someone and melt down with frustration and KNOW that they KNOW exactly how you feel. Then they call you a few days later sobbing and you hold them through the phone and you just BE together. The unexpected gift is to find someone who doesn’t understand at all, but who won’t leave your side and says, “I can’t possibly imagine what you are going through right now and I don’t know what I can do for you, but I am gonna stay here with you and you just let me know if you need anything. Anything at all.”
This is why support groups on Facebook and in person became so important for me. I really needed to have access to people who were experiencing what I was experiencing. I didn’t have to go into deep explanation and they already knew what I was going through. They knew I wasn’t making anything up and sometimes even had resources I had never heard of. It was so valuable. However, there are always people who have nothing better to do than lecture you with borderline medical advice, feel the need to defend their badge of identity (having a disease with no cure) or criticize your comments and it gets really enraging and counterproductive. Online groups can be super helpful and it helps to have a thick skin. I joined the online learning community of moldillnessmadesimple.com because it was put together by an actual doctor who detoxes people with mold illness. I learned about a NeuroQuant test that measures the gray matter volume of the brain to check for volume loss from mold illness. I asked to have one done, (because I had practically become my own doctor by this point) and sure enough I had lost enough gray matter volume to reflect the size of someone with Alzheimer's. It’s kind of serious to say the least. It explains why my memory was declining at an alarming speed and how I couldn’t remember how to play instruments, read music, remember my own lyrics and I could barely remember anyone’s name. Apparently, it is reversible, but you have to extract all of the mold out of the body, which is an art in itself, very complicated and can be VERY painful. Every time I have started a mold detox protocol, it felt like an assault on my body from tiny knives and pieces of glass digging and twisting their way through my skin and tissues, and it was not even bearable. Each time my body experiences that level of pain, it brings up all my past childhood abuse and I shut down, or seriously freak out, or both.
So much had happened in my childhood that all the therapy in the world was not resolving my rage and bizarre subconscious patterns. My nerve pain would randomly flare up all over my body to unbearable levels and it was turning my mind into swiss cheese. I reached out to an old friend and she got me into an art therapy program which went through the entire book, Recovery Of Your Inner Child by Lucia Cappachione. I even got to work with Lucia, herself. It was life-changing. After one chapter of exercises, I felt different and my body felt different. Besides being a child development expert and explaining to me how developmental trauma affects the nervous system, she focuses on use of the non-dominant hand for drawing and writing, because this is the hand that is linked directly into the limbic system and the emotional realm where the unedited child lives. That is where The Truth and the gold reside. It is very difficult to gain such access through your dominant hand, for it was trained alongside the reasoning, logical mind while you learned mathematics, spelling and chemistry. Lucia helped me get to the gold and the exercises changed my life. Major issues I had been dealing with in conventional therapy or CBT for years had just dissolved in weeks of learning how to dialogue using my non-dominant hand, along with very specifically crafted exercises. A huge alchemical shift had taken place in my psyche and I felt an emotional freedom I had never before experienced. We added visualization exercises with collage work and I broke the chains of years of oppressive paradigms and thoughtforms. I felt like a new person.
As my entire innerscape was evolving, it still felt like my physical body was falling apart. After all, every morning it took me 30 mins to get out of bed, and half the time I had pulled a joint out of place from one of my sleeping positions. Me and my EDS friends joke that, “Sleeping is Dangerous.” I was constantly running to the chiropractor to get put back together, which would involve an adjustment and some kind of John Gibbons method of kinesio taping to keep my joints in place, (which always worked!) I would feel great for about 2 days then fall apart again. I had a major problem with my ribs coming out which basically feels like you were shot. I was determined to stop going through the rib thing because it brought me to my knees every time, so I started doing physical therapy and exercises specifically designed to keep the ribs in place. If I go for 2 weeks without doing my exercises, my body starts to fall apart and I begin sliding into what is referred to as “Deconditioning.” In many cases, but NOT ALL, of EDS, the majority of the pain can actually be from the pain of deconditioning itself, and if one can push through the pain of it there can be a pain relief of up to 70%. It hurts to push through deconditioning pain. It took me 2 weeks the first time. I was also having problems with my ankles and feet and had to wrap them daily. I realize now that I was never able to wear super high heels because I would roll my ankles and whenever I would play shows in my slip-on stage shoes, I would always kick them off during the second song and end up playing barefoot. This is why I always have a rug on stage. I was always so uncomfortable on stage with my shoes and clothing, but the waist cinchers and corsets never bothered me. OH… that was because it was like one giant brace holding me together! No wonder I loved wearing latex as well. I always felt stronger and supported….duh.
As I connected even more dots, I was still frustrated that very little physical progress was being made. I mean, even though I stopped continual hospital visits and was not in a wheelchair, I still had to have a cane with me at all times and I had to be taped up to walk around. And to add insult to injury, I had gained 60 lbs over the course of the past 4 years. No matter what I did, how many calories I burned, ate, didn’t eat, etc. my weight would slowly climb from all the inflammation and toxicity in my body. The doctors would tell me that my body was trying to protect my organs from all the toxins and that I had to be patient. Well, I ran out of patience. My body could not handle the weight because my frame is quite tiny, like an elf. I was filled with Elven Rage. My CBT therapist pointed out that it was flipping me out because I had never given my “consent” for this to happen to my body. It was happening without my “consent” no matter how well I took care of my body, therefore it started to feel like the abuse from my childhood and I would spin out. He is a genius, by the way. I never made the connection on my own.
It was at this time, Lucia told me about a book that had just come out, called The Plant Paradox by Dr Steven Gundry. She had been following his guidelines for eating and it had changed her life. I believe whatever she says, since she is like my fairy Godmother at this point, and so I bought the book. I was rolling my eyes as I was on Amazon, like “Oh My God! Another stupid ‘DIET!’ You know this is not going to work because you are exotically fucked up and nothing works!” Understand I have done every medical diet out there from GAPS to FODMAPS to CSD to vegan to paleo to vegetarian to gluten free to keto to blah blah blah… and I stayed sick. But, he talks about lectins (the poisons in plants) and I did not even know what those were! So… I slowly started to remove things out of my diet (because it is a huge learning curve) and low and behold the first day I had gone completely lectin-free, 95% of my pain disappeared within 24 hours! WHUUUT?!!! I went back and forth 4 different times just to make sure it wasn’t in my head. Every time, the pain disappeared. I went on an ALMASED 14 day fast (which is lectin-free) and it stabilized my metabolism, started to heal my intestinal tract and protected my muscle mass. (I was putting NeoCell collagen & PREbiotic powder in my shakes while amping up my PRObiotics.) I then went to the next phase which is ALMASED shakes (which I only ever do with water, no nut milk) with only one meal per day. I kept my meals lectin-free and the weight just started to drop off my body consistently at 2.5 lbs per week. It was a miracle. I couldn’t believe it was happening. I even contacted Almased to tell them my story and they were so moved they are now sending me most of my monthly supply and working on giving me my own discount code for friends, family and fans. My progress has been consistent for several months now and I still can’t believe it is happening. Outside of hormonal issues, I no longer experience pain, my joints rarely dislocate, I no longer have to tape myself up to walk or wear an SI belt. If I talk about it for more than a few minutes I just start crying. I am just so grateful to Almased, Dr Gundry and Lucia… and my CBT therapist and my functional neurology practitioner.
My daily routine always involves me stretching out and rolling out my thighs (front, inside and outside IT band) with a Tiger Tail roller. If I do not roll out my IT bands and thighs every day my SI joint pain goes through the roof. When I start feeling pain, I know it’s time to get out the roller, and the pain instantly disappears. I walk on the treadmill when my body is up for it and I do light weights. I wear my red glasses and lie down when I need to rest. I have learned to always listen to my body, it is still healing. I drink my Almased shakes and keep my diet 100% lectin-free. I make sure to do something artistic every day and I do non-dominant hand dialogue to keep my emotional life current. I process my experiences in real time now as much as possible to keep from storing things in my body. My health is not perfect. I have major hormonal imbalances, my digestive process is still healing, my memory is horrible from cognitive decline and loss of gray matter volume, I can’t tell what temperature it is outside and I can’t breathe very well and the list goes on… BUT take away intense chronic pain and extra weight, and it makes all the other problems shrink to shopping list size. As Dr Seuss said…
“And I learned there are troubles
Of more than one kind.
Some come from ahead
And some come from behind.
But I’ve bought a big bat.
I’m all ready, you see.
Now my troubles are going
To have troubles with me!” -Dr Seuss
(Always be the bat and become your own hero.)
My priorities have changed a lot in the past 4 years. My health and sense of peace come first. I have returned to creating art and music and good ‘ole fashioned writing. If my body feels good at the thought of it, I do it. If my body flares up in stress at the thought of something, I take a second look at it and only do it if it is a mandatory, grown-up obligation. I sit comfortably and self-lovingly in my life position of not giving a shit what anyone thinks of me. I will not apologize for what I love or how I choose to celebrate my life. I know who I am. I am a good person, I am of service and I am self-reflective member of society. I strive to walk a path bound by spiritual principles and my relationship with God is the most important relationship in my life, as it always has been. I have been willing to pay my dues tenfold for life lessons of priceless value. I have made peace with my past and when a demon comes out to play, I grab it by its neck and ask it its name. To live in the future one must release the pain of their past. How one releases their past is as unique as their soul expression.
My hope is that there be some part of my story that gives you inspiration, hope or insight into a difficulty you, yourself may be experiencing. If you do not have enough faith that the darkness will pass… then I give you some of mine. You must find something BIGGER than your problem or trauma, whether it be music, movies or God. If you feel lost, may you find your way home. Always look for the light. If you can’t find it, ask it to reveal itself to you, then… start walking. May all the resources you require to heal yourself be laid at your feet.
Thank you for supporting me through sickness and in health. It is my pleasure to create music for all of you, to make memories to and help pull you through the dark times. Follow your Bliss…
* A very special Thank You and deep gesture of gratitude to everyone who has supported me through my medical expense fund. It is because of you that I was able to keep going, afford physical therapy, tools, books, training programs, supplements, doctors’ appointments, etc. Thank You, my angels.
c.2017 Colleen Duffy