Many people ask me what I have done to look the way I do, assuming I have found a way toward remission, and hoping I have answers that can help them achieve the same.
I wish that were true.
I want to help comrades (and strangers alike) who are suffering from Morgellons Disease. The fact is that when you are looking at photos of me on Facebook when I’m not advocating for Morgellons awareness, you are seeing me trying to enjoy normal life. I’m not baring anything, in fact I am camouflaging everything.
Any Morgellons patient will tell you that this takes an effort unlike most we are called to put forth in life; to be engaged in life with others who do not have Morgellons means we must first try to mute or stifle the most obvious symptoms in order to see and hear beyond the roar of disease.
Because I have disfiguring facial lesions, this means SPACKLE. Yet if this was the only thing needed to prepare for a day of “normal life”, we wouldn’t be doing this here, this baring of souls… this chronically difficult stutter while trying to find the words would not be necessary. This disease is obviously about MUCH more than aesthetics and makeup.
In the beginning years, the desire to immediately report anything that began to personally help my symptoms was very strong. I guess that’s because we all think there is something that HAS TO make this go away. There just HAS TO BE SOMETHING.
And the truth that we all stumble upon eventually, when meandering the crumbling halls of the hurt on the internet: there simply is no ONE answer. Different things work at different times; a maddening and confounding fact we find out after the seconds of suffering become days that add up to weeks and months and years and the dollars and time lost looking for help or for a cure that doesn’t exist seem to mount exponentially as well.
We find out that we cannot accurately measure and devise plans for anyone but ourselves here. Even the most savvy “lyme-literate doctors” have a hard time untangling these zoonotic polyinfections and deciding what to treat first. Because there is an order to things… certain infections produce by-products and turn on genetic factors and growth factors that make other infections impossible to treat effectively unless in a particular order.
All of that said, I think you get my point: As much as I wish I had the answers to help anyone and everyone, I simply do not. I don’t have the answers to heal myself, nor anyone else. I have a voice, that is all.
Ok I have makeup, too. Although it breaks my heart that I took my healthy skin for granted years ago. I have always worn makeup, and in fact did makeup for clients professionally as a cosmetologist for many years before this disease made it too difficult professionally, and chemically.
This is what I look like. I used to post about it publicly for many years on my regular Facebook profile. I know it helped me at the time, and many others around the globe, thanks to their messages of gratitude. These days I am trying to immerse myself into regular life and real love finally, so I am turned toward joy and perhaps less toward my work of validating others.
There was a question from a beautiful sister recently, asking if I still get lesions. This question was from a sweet girl whom has very similar facial effects from this disease. This post is for her. This is reality.
Just because I can do some alright spackle-work doesn’t mean I have ever reached remission. I almost did, once… that was after 1.5 years of double antibiotics aimed at my bartonella infection. A quick relapse ensues every time I stop antibiotics, so I keep spackling.
This isn’t to say there is no hope. There is plenty. I haven’t been able to afford a Lyme doctor at all for almost a year. I almost lost my mind and memory treating my borrelia infection with disulfiram.
But I found love. It isn’t easy. Sometimes it feels safer and easier to be alone. But that is the most dangerous place, in my experience. The only time I believe that lie that I tell myself is when fear and vulnerability derail my mind. The thing is, my own childhood-trauma reactions are the only thing that cause me to believe that I’m not worthy of love. In fact, I am SO supported by and comfortable with my man about Morgellons that one of my favorite times of a day with him is when he brings me a cup of coffee in the morning and sits and visits with me while I spackle. I don’t have to hide. But I still love makeup.
(Self explanatory before and after-makeup photos taken this week on the same day. It’s not perfect, but I can grocery shop for my kids without feeling like everyone is staring at me, I can go to work most days, and I can smile back at my partner without looking away. When you have this disease, these things are HUGE.)
This post is dedicated to my friend Wendy. 💗
There is no greater agony than bearing an untold story inside you.Maya Angelou
It’s time to tell our stories… as many as we can. If you’d like to participate, please let me know and I will arrange a time for an interview. Below you will find the list of questions you’ll be asked.
Schedule your interview today by emailing me at:
This interview is casual and can easily be broken into up to three different video calls. I will take notes as we go over the ten questions and then i will take my time honoring you by doing an authentic and respectful write-up which you have the final editorial say over.
These interviews will be conducted over video call, but published in written form, not as a video. Before publishing I will be sharing exactly what I have written from our video call, so there will be absolutely no surprises.
This list of questions is just to prepare those who want to participate with the exact questions that will be asked.
Thank you for your honestly, willingness, and openness. Our stories deserve to be told.
- NAME, AGE, WHERE YOU CURRENTLY LIVE. (generalizations like “young adult” or “middle aged” and “SW USA”or “Canada” are ok if it makes you more comfortable, FOR ANY OF THESE QUESTIONS.)
- WHERE DID YOU LIVE AS A CHILD? (Please describe whether it was urban, rural, etc)
- WHEN DID YOU REALIZE SOMETHING WAS WRONG PHYSICALLY, AND WHAT WERE YOUR INITIAL THOUGHTS OF WHAT IT COULD BE?
- WHEN DID YOU REALIZE IT WAS SPECIFICALLY MORGELLONS? WHAT SYMPTOMS WERE CAUSING YOU TO REALIZE THAT’S WHAT WAS WRONG?
- DESCRIBE YOUR FIRST EXPERIENCE(S) SEEKING HELP FOR WHAT WAS HAPPENING.
- DID DOCTORS TRY TO DIAGNOSE YOU WITH OTHER THINGS? WHAT WERE THOSE MISDIAGNOSES?
- DID YOU EXPERIENCE ANY ABUSE FROM DOCTORS? DESCRIBE THE TYPES OF NEGLECT OR ABUSE YOU EXPERIENCED AND HOW IT MADE YOU FEEL.
- WAS YOUR FAMILY THERE FOR YOU? IF NOT, HAVE THEY COME AROUND OVER TIME?
- HAVE YOU LOST ANY RELATIONSHIPS WITH FAMILY OR FRIENDS DUE TO HAVING THIS DEVASTATING DISEASE?
- HAVE YOU EXPERIENCED ANY AMOUNT OF REMISSION? WHAT HAS HELPED YOU THE MOST? (these can be things that helped physically, emotionally, spiritually, etc.)
This is an effort to give myself the space for what I can’t always feel or say in other places, and to give others with Morgellons Disease validation for the devastation which I too have long been filtered by.
Too many of us lose family and friends on this journey. Sadly, it’s because this thing is too difficult to understand. We can give LOVE without fully understanding, though.
I don’t have any answers. I only want to share the gift of honesty and understanding in the form of the only thing I have to give at this point: my thoughts in writing. Writing about this doesn’t come easily for me; the trauma of recalling the trauma… in order to capture the most honest essence in written form feels counterintuitive to healing. Because of that, the fact that I am still healing… means I have to stop feeling guilty when I can’t find the words.
When I can find the words, I will put them here. If you don’t hear from me, chances are I’m just leaning into a more joyful existance. I feel lucky to be alive. 📝
I want my dear few followers to know how much I appreciate their patience and support.
I am technically technologically green. I don’t know much about computers nor about building a website.
“A computer lets you make more mistakes faster than any invention in human history–with the possible exceptions of handguns and tequila.”Author Unknown
I realize now, as I make more mistakes than progress, countless changes to color schemes and accidental re-publishings…
I’m merely trying to build my nest.
A place that feels like home. Somewhere I can take my socks off and toss them on the floor. So what about the freakshow toe.
This is my home, where it needs to be comfortable to be a mess if the day calls for it.
💙 Thank you again!
I write in my head all day long.
Not only because it’s a lifelong habit, which it definitely is… and besides life providing ample experiences for each of us to consider every day, having this disease called “Morgellons” means daily intrusive symptoms.
Maybe the disease is behind my occasional inability or discomfort with being public about anything. The symptoms are still so alarming, even after seven years of living this life as a hostage in my own body. That and the fact that only people with Morgellons can fully understand what it feels like to live with it makes me want to talk about it, and I still feel the need to connect with other sufferers.
On social media I did talk about my disease openly for many years; in order to validate others suffering from Morgellons I even posted public close-up photos of my skin. I felt this need to carry the burden for others somehow and also to show the ugly to the world. This was my gift of validation for the community I trusted and felt such a part of for a time. Years, in fact.
Of course that didn’t last, as trust in some fellow fighters on this journey was lost… and that loss of trust has definitely affected my writing on this whole topic.
I still keep getting spooked every time I think about putting my thoughts in writing! After too many crushingly negative experiences with some members of the Morgellons community I find myself feeling mute most of the time; at least publicly. I want to write… but I also want to hide.
It just feels so much easier to withdraw, to retract within to safety and surety. If I don’t put myself out there, I won’t get hurt. This is a place I have visited many times, and it leads to isolation. Safety sometimes means isolation. Then what.. be safe but sad and alone?
I don’t know… I’ll be working on shifting the way I think about this writing, and who it’s actually for. It may be the only way I’m able to keep writing without the shackles of self-consciousness and the filter of heartbroken anger and paranoia.
Maybe that sounds dramatic, but the way in which my heart and my inbox have been brutalized by people who said they loved me and were there ’til the end… people who I unabashedly trusted and who each eventually showed their shallow and hateful hand of cards. It means I now need to address the trauma of that if I want to continue writing about Morgellons at all. I honestly haven’t decided if it’s worth it, yet. Having the disease is traumatic enough. It could be time for me to stop trying to find words for any of this.
I see others doing a fabulous job using their voices to stand up for Morgellons patients and they seem passionate about similar aspects regarding human rights. Young people with lots of energy!
I remember years ago being perplexed in the various support groups on social media; where were all the Morgellons veterans? Had they gotten better? Had they *gasp* died?
Now I find myself BEING one of those people who isn’t in groups anymore, and for me the reason is PTSD. It’s not that I’m in remission, it’s that seeing all of the photos we all take of the same terrifying things and also witnessing all of the intense trauma and loss that we all are forced to endure for years on end.. it retraumatizes me now to see all of it. In the beginning I needed to be there.
I really can’t be there at all, anymore. Besides that, I won’t be going to conferences annually like I had for 6 years. And you know what they say, focusing on things makes them bigger. These days I tend to keep myself busy with mothering, loving, and messy art. 🧡
My writing isn’t finished; I doubt I will ever stop needing to spill my brain out into text in one way or another. I have a lot of great things happening in my life and I’m just not sure that my thoughts on Morgellons will benefit anyone anymore. The disease has stolen so much from me and terrorized my soul for so long now… and like everyone else, I just want to be happy.