Deep Healing Happens in Private

I've pulled back from sharing about my healing journey (or whatever you wanna call it) a lot through the last half year or so. 

It's not that I don't have things I'd love to share with you all... I've got a little journal full of ideas and in my opinion, pretty good information. But, I'm in no rush. For once, I'm letting it happen without my forced timing. 

And honestly, I've needed to step back the last few months. Simply because I realized that a lot of the deep healing happens in private. It's not all about the surface, the things I can show. It's not the medications, injections, IVs. It's not always voicing every emotion, every decision, every step forward or backwards. 

Healing can be a private friendship you create with yourself. It's willing to go back to the places that hurt the most. It's a dedication to stripping down to your bones, and still feeling strong. It's giving up your control again and again. It's accessing deep, and sometimes dark, layers. It's going places that are very hard to go. It's a willingness to try. To let go. To live lightly. It's a process of developing unwavering trust. 

It's taking chances. 

It's dismantling fear. 

It's fucking everything. 

True healing is life long if you do it right. Because healing is your growth. It's your evolution. 

I'm in this for the long haul. Who's with me?

Melissa's Lyme Don't Kill My Vibe Fund | Treatment

YOUCARING DONATION PAGE HERE.

A few notes on fundraising:

Doing this fundraiser has been another process of healing. But it's often painful to relive this story. Retelling my past and going through the last four years, feeling all those fears... Fears that still creep up during my most painful times with my disease. I've had to battle with my own faith. I've had to surrender. I've had to let go. I've had to sacrifice, adapt, and re-evaluate time and time again.

I want my health back... And I'm so close. I just need some help.

For all of you who read my stories:
For all of you who have stood by my side:
For all of you who believed in my healing:


Thank you. 
Melissa

 

Health Update/Treatment: October 2016

I don't really do these... I find the intricacies often hard to talk about. My health is up and down, and ranges from "getting better" to "pretty bad." That being said, we've made some pretty incredible breakthroughs, and I constantly surprise myself with my ability to do more physically, and take on more mentally. But my health is complicated. There is always more to learn (often new diagnoses that help complete my complicated picture), and my health still manages to scare the shit out of me on a near-weekly basis.

I've done a lot of work, honestly. I think back to my overachiever days in high school, in college, and when I somehow managed to start my own PR consultancy at the age of 22. I was dedicated. I put in the (extra) hours. I planned and strategized. But, well, as you may have guessed, things didn't turn out the way I wanted them to. The kind of work I do now is a lot different. But trust me, just like some of my UT business classes and extra finicky clients I had during my PR days, the work I do now is depleting... at times a bit traumatic. It's painful. It's scary. But I have to face my problems, my illness, my symptoms every day. I have to do this so I can heal. 

Very few people in my life have seen what I've been through firsthand. Few have seen the amount of hard work I put forth, fingers crossed that my treatments work. That the IVs, injections, and surgeries provide some sort of relief. That they can carry me and my hope so I feel enabled to keep going, inching toward health, waiting for my symptoms to lesson. I am sure a lot of readers of this blog are experiencing their own version of this; and, if you're in this weird world with me, this probably sounds all too familiar. 

I'm officially two years into working with my team of holistic doctors in Washington (Holistic Healing Arts and Sophia Health Institute, along with a couple of other independent Dr. Klinghardt-trained practitioners). I wanted to share a quick timeline of where I've been and where I'm at:

Four years ago my health was deteriorating to the degree that it significantly interfered with my career, lifestyle, and relationships. I lost my ability to work and live on my own. 

Three years ago I moved home with my parents. I began pulsed long-term antibiotic therapy for late-stage Lyme disease. But along the way to that diagnosis, I collected a few others: chronic fatigue syndrome, mixed connective tissue disease, autoimmune disease, food intolerances, chemical sensitivity, generalized anxiety disorder, clinical depression, panic attacks, chronic sinusitis, chronic migraine...

Upon my diagnosis of Lyme and thereafter, I collected several more: POTS (Postural Tachycardia Syndrome), Babesiosis, Rocky Mountain Spotted Fever, Tularemia, Bartonella, Chronic Epstein Barr Virus, Mycoplasma, SIBO, heavy metal toxicity due to amalgam fillings, mold illness, genetic mutations, and on... and on...

(See why I just sum it up with "Complex Chronic Illness"?)

Two years ago I began working with a team of practitioners near Seattle, Washington who have been giving me my life back. Over $100,000 have been spent, over 24,000 miles have been traveled, over 600 needles have been placed in my veins or stuck into my skin, and over 25,000 pills have been swallowed.

Some things I've done (and/or am still doing!) up until this point:

  • Long-term antibiotic therapy (in my opinion, a mistake, but the only option I first knew of)
  • Targeted short-term antibiotic therapy (ah, much better!)
  • Prescription anti-fungals, anti-parasitics, and anti-viral medications
  • Prescription injections and IV for antimicrobials and anti-parasitic treatment (namely, Artesunate) 
  • Herbal antimicrobials, anti-fungals, anti-parasitics, and anti-virals 
  • Supplements: vitamins, minerals, etc
  • Nutritional IVs
  • Glutathione and Phospholipid IVs
  • Neural Therapy and therapeutic injections 
  • Ozone (in form of Ultraviolet Blood Irradiation IVs and otherwise)
  • Low-dose Immunotherapy injections
  • Detox treatments (to stimulate the lymphatic system, liver, etc.)
  • Mostly clean, organic diet that's ever-changing simply due to what works for me at any given time. Never Gluten. 
  • Bravo 
  • Removal of mercury-containing amalgam fillings
  • Mild chelation therapies (though I did use EDTA and DMPS)
  • Cavitation surgeries of the jaw (2 of 4 complete)
  • Homeopathy 
  • Acupuncture (TCM, Japanense, and Five Element) 
  • Reiki and Craniosacral Therapy
  • Medical Qigong
  • Psycho-kinesiology and family constellation work
  • Trans Somatic Dialogue 
  • Shamanic healing
  • Traditional counseling
  • Body work in form of visceral massage, lymphatic stimulation, Rolfing, etc
  • And of course a few prescription drugs to help manage symptoms until they resolve

(And I'm sure I'm forgetting stuff...)

So, like, what else could I possibly do? Well, there are a few options. The first very necessary step toward whole-body healing is an operation: Removing my deeply infected tonsils.

What do tonsils have to do with having Lyme disease? Well, for me, I'm pretty sure everything. Okay, maybe not everything - but a lot! 

I am pretty passionate about this whole tonsil thing, so I'll save the details for an upcoming post dedicated specifically for those buggers, but for now let me break it down simply:

When I was around four-years old, I got chicken pox. I also began developing tonsillitis and strep ALL. THE. TIME. The strep (and possibly Lyme) infection likely triggered something called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Now, before I get into PANDAS, let me clarify: They didn't even have this diagnosis 20+ years ago, so I was not actually diagnosed with it at that time. However, upon having reoccurring throat issues as a child, I also developed some other (mostly ignored at the time) symptoms: neurological tics (mostly of the throat, but also exaggerated blinking of the eyes), vocal tics, OCD, anxiety (also separation anxiety), etc. 

This has all led me to believe my health issues began at the latest, by four years old and manifested into something much greater with time. 

My tonsils are what my holistic doctors call "an interference field" contributing to an unmodulated immune system. If I'm homing chronic infections in my tonsils that my body can't clear (nor can antibiotics), my immune system is WIRED unable to attack other pathogens, which then opens up my body to complex and opportunistic infections (enter Lyme and friends). My tonsils are what my mainstream, conventional doctors call "cryptic and definitely contributing to me being sick." Anyway you look at it - they have served their time in my body (thanks, tonsils!) but it's time to go. I have a feeling my persistent fevers may resolve after they're removed. 

I'm really counting on this tonsillectomy to help bring me toward sustained relief and progress. Like I've said, my progress thus far has been up and down and not much "sticks" for long. It is my team of doctors' hope that when my tonsils are removed, my body's immune system can stabilize, if you will. The tonsillectomy is not the end, but it's a step forward. 

Okay, so get them out, right?

Removing my tonsils became priority of treatment since January 2016. It's now approaching November 2016, and they're still here chillin', just f*cking stuff up. (Pardon my colloquial language). I've had some set backs regarding this surgery.

  • I've had issues with insurance coverage: My plan would not cover an out-of-state surgery to where I could be under the care of my team of doctors for post-op recovery. I found this out three days prior to my scheduled surgery in Seattle, WA. So...
  • I had to re-start the process back in Texas. I had to first see my PCP, then an ENT, and then source out where I would get post-op IVs, cranial care, etc. Much harder to do here in Texas vs. Washington where I have 3 accessible clinics.
  • I've had to push back my surgery due to family obligations.
  • I had abnormal blood work come back (two days before scheduled surgery NOW in Texas) which led my surgeon to believe I had a blood disorder.
  • I then had to go to an oncologist to have my blood work examined to make sure I didn't have said weird blood disorder or cancer or something ELSE.  
  • Once my blood work was cleared, I was over a week past my initial surgery date and had to reschedule AGAIN. 
  • Now my surgery is slated for roughly around November 10. (First-try surgery was scheduled for June 13. The second-try surgery was scheduled for October 13)  

I've had to change my plans. As much as I've tried to line things up for this surgery to happen, it's been a struggle since this last summer. Sometimes, things are just out of your control... (as I discussed in my last post.)

My surgery is now booked for November 10th, just two days after I return home from another round of treatment in Seattle with my main team of docs.

When I began treating, I had at least 20 symptoms. My main complaints today (symptom-wise) are: chronic migraines and headaches, migrating musculoskeletal pain (but mostly in my legs and back, sometimes in my arms), unrelenting fatigue, tachycardia (POTS symptoms), anxiety, chronic sinusitis (and tonsil issues), and fevers. I've been having multi-weekly (sometimes daily) fevers since February 2016. Oh, and ovarian cysts. F*ck those.

Sometimes my symptoms flare and I'll have nausea and vomiting, severe gallbladder and spleen pain, blackouts and fainting, major sleep disturbances, depression and depersonalization, tremors and twitches, brain fog, and seizure-like episodes... but these are lessening with time. 

So, the plan? The plan is ever-changing. But for now it stands:

1) Check in with my Seattle doctors in early November. I'll be at my clinic for a little over a week.

2) Tonsillectomy (Mid November!)

3) Recover from having my tonsils cut out. (Side note: this is rarely a big deal recovery-wise for children but it's apparently absolute HELL for adults.)

4) Re-check in with my Seattle doctors in early 2017

5) Plan for possible oral surgeries i.e. Cavitation surgeries (2 of 4 to go, both left side of mouth). 

6) Have cryotherapy done on my throat and nasal/sinus passages.

These are my major milestones. I'll have a lot of complementing treatments (and a full at-home protocol) along the way, too, of course.

Anyway - there it is. My first long-winded update in about a year and a half! (P.S. I love lists.)

Facing Reality: "You Are Loved"

I often think, "this is not how it's supposed to be." "No, World. No, God. No, Universe, you got this one wrong." We plan, we coordinate, we line the pieces up ever so perfectly just to have them wiped up from their surface, tumble through air, falling one by one to the ground as it takes our breath.

"Surely, this can't be how it's supposed to be." 

I'm embarrassed, because sometimes I feel really sorry for myself. Sometimes I feel abandoned by God... and that... that's the first time I've ever written that. So, I started screaming. Crying. "Show me you give a damn!" And then, again, just like the last time I threw my hands in the air and said "NO MORE!" ... There it was. That something that reminded me that love, and light, and realness, and magic, and safety... and hope... they're still here. Maybe you find it in sunshine, the way the clouds part in the sky. Maybe you find it in a raindrop, the very one that hits perfectly on the top of your nose. Maybe you see it in a loved one's eyes, the way they hold you, so your body can finally stop holding itself. 

And so you remember, again and again. It all lives: above the rainfall, along the wind, and in your skin. Yes, your fear and pain live here, too; but trust me, the good stuff goes deeper. Living in your bones, ready to be called. Scream if you have to, but a whisper will do, too. "You are loved."

 Photo by Chloe O'Neill (More Than Lyme)

Photo by Chloe O'Neill (More Than Lyme)

Reflection: My 3 Year Anniversary with a Lyme Diagnosis

Last week was my 3 year anniversary of being diagnosed with late-stage Lyme disease (better called complex chronic illness) which includes the unlayering of what "chronic Lyme" consists of. For me, it's the many co-infections that come alongside a persistent infection of borreliosis due to an unmodulated immune system, one that has also triggered dysautonomnia and autoimmune disease.

I had no idea how complex my life was going to get. I was deeply relieved when I was finally diagnosed, but the truth is: that was just the beginning. The truth is, the recommended treatment didn't work for me.

Emerging science (from respected researchers, one being from Johns Hopkins University) has implicated that antibiotics long used to treat tick-borne illnesses actually DOESN'T kill the resilient Lyme bacteria. My current team of alternative doctors have known this, but we're still waiting on everyone else to catch up.

My disease is still under-researched and underfunded. It is still polarized and politicized.

So I stand here. Still. Three years after beginning treatment. Nearly four years after becoming disabled from a life that was deemed "functional."

I stand here to share pieces of my story. Because I want people, my peers struggling alongside me, to have hope and feel less alone. But facts are facts, and we've been left behind by our medical system.

We are our own researchers, advocates, guinea pigs. We are left with inaccurate testing. We have disbelief from doctors. We have scientific proof on our side, but we're forced into this unnecessary waiting game.

Me, and hundreds of thousands of others, are waiting for a cure. While government money gets poured into Zika, I have dozens of friends who are fighting on, pouring their money that they don't have into expensive treatments because it's our only hope for sustained relief. Despite the fear it brings... Despite the fact that we have no guarantees... Despite the fact that untreated Lyme is tied to the more *publicly viewed* serious diseases of MS, Alzheimer's, Parkinson's, and ALS.

I still believe I am healing with the help of my team of doctors. I credit holistic medicine. I can function at higher levels - and do more than ever...

But it doesn't mean that many of my days aren't spent underneath my covers in the dark (literally and figuratively). It doesn't mean that my unrelenting symptoms don't force me into the ER, like they did last night.

But I believe in healing. I believe in change. I believe things will get better. I have to.

Coming Alive (Part 1)

I know what it feels like to be sad, to feel loss, that pang-in-your-chest-knot-in-the-stomach kind of sadness. The kind of sadness that brings on real, physical pain. 

But what I had grown even more afraid of was my visitor of numbness. A side of depression that isn't talked about as much. An emptiness that threatens your aliveness. 

I think many of us have had moments when we look into the mirror and question who we see. We ask "how am I alive right now... why... am I alive right now?" And if you haven't, I don't know, maybe this article isn't for you.

I'm talking about the bitterness that you can't quite place, because rather than actually feeling, it's the absence of emotion - it's the absence of life. 

I've suffered from clinical depression and generalized anxiety disorder (along with bouts of mania and panic disorder) for much of my life, but I was officially diagnosed when I was 19. Honestly, I just figured that's how everyone lived and felt. It took me 19 years and a trip to the ER before I realized, oh -- maybe this isn't normal...

I remember going to the university therapist, the first mental health professional I'd ever met. I remember saying, "no matter if everything is going 'well' with my life, I can't imagine what it would feel like to be happy - truly happy." I would think about my future and be incapable to visualize what 'being happy' even looked like.

Just writing that breaks me. I was on the brink of entering my 20's and I, many times, just wanted to die. I don't know why. I couldn't explain why I felt so empty and so alone -- I had great friends with a wide social network, a loving boyfriend; I was attending (and educationally thriving) at one of the best public universities in Texas. But I also didn't realize how physically sick I was back then. I do remember sitting in my closet, sobbing, telling my boyfriend at the time that something was very wrong with me. I told him I thought that I was sick, but I didn't know what it was. I remember thinking, "it's like a ticking time bomb... one day I'm going to get really sick. I'm going to get cancer--or something..." Yeah, it sounded crazy, but I guess I wasn't too far off. Because about 3 years later, my body collapsed with what we now call Late-Stage Lyme Disease (to me, known as Complex Chronic Illness/MSIDS). Maybe it was my intuition saying "WAKE UP! Listen to me! This is going to get very bad!" But, who has time to listen to your body when you're trying to get that 4.0, build a resum√© in a time of economic decline, and -- to be honest -- party through the weekends?

I was immediately placed on antidepressants and anti-anxiety medications to help quell my panic attacks. My episodes were so extreme that I often couldn't go to class. The attacks would come out of nowhere -- I would hyperventilate; my oxygen levels would decline... I would lose feeling in my limbs; my chest would hurt so severely I was sure I was having a heart attack. Sometimes I would black out. My best friend Amanda would skip class with me and crawl into my bed so I wouldn't be left alone. We'd watch The Breakfast Club and Pretty in Pink on my computer. She'd bring me food, and we'd have hot tea. I don't know if I would've made it through that semester without her. 

The extreme panic disorder came and went throughout my twenties, but there was always an underlying presence of anxiety in many parts of my day. I was off and on pills, and in and out of mostly unhelpful therapy. Honestly, our culture has made living on Xanax, coffee, and very little sleep perfectly "okay". And while more and more people are speaking out about mental illness in a variety of ways, which does help de-stigmatize it, I was living life on the edge of a complete collapse. I thought, well, this is just how I have to feel. I can't be weak... And like I've said before, there is often a perceived strength in people who just push their way through their lives. I was prepared to let the world harden me, and I was going to carve out a life for myself based on society's ideals of what I should be at twenty-something years old. 

In my mid twenties I began noticing the other side of depression - the side that brings apathy, desensitization... Sure you're walking around, you're "present," but your spirit is paralyzed within you. It inhibits your ability to give and accept love. It traps you in a box where you're distant from everything that is breathing and alive. You're existing, but that's about it.

Every now and then, maybe you'll catch a glimpse of a spark -- something will give you goosebumps, someone will make you laugh until you cry, or maybe they'll hold you close enough and long enough to where your walls will start to come down. Now let me clarify, so much of this is subconscious. No one wants to be unloved. No one wants to be a shell. No one wants to be empty and alone.

I didn't have a word for these feelings until about a year and a half ago: Depersonalization. I'd find myself in situations and actually feel like I was watching myself, rather than being inside my own body. My actions were sometimes entirely separate from my thoughts. Visually, I felt like I saw life with weird, fucked up, distortions. Like I was watching the world, without being part of it. Like I was trapped behind a thick glass, air running low, suffocating with my own breath.

I haven't really shared many of these feelings publicly, so I do apologize if it comes as a shock to some. But these feelings would come and go. For weeks on end I wouldn't feel much, and then suddenly, I'd be on the beach, toes deep in the sand with winter ocean water splashing up on my knees and I'd snap back into my body. "Ok, maybe I can do more than just exist," I'd think.

I've been terrified to say that maybe, some of these feelings have left me for good. I'm scared because they've always found a way to come back. I don't know what makes this time different, but I know I didn't get here on my own.

However, what I am about to share is important: Some of these feelings are okay. Being comfortable and unquestioning is a luxury to those who plan to stay where they are. And chances are, you're not one of those people. This is part of our soul's evolution. Sure, at times, these places we find ourselves in are dark, lonely, confusing, and so uncomfortable you want to crawl out of your skin. But please, just hang tight, because I promise you, it's not forever. 

Now, to feel anxiety, and experience depression, depersonalization, or anything along those lines is not your fault, and I'm not telling you to just get used to it. What I'm telling you is this - just listen. Listen to these messages your body is communicating to you. Become intensely "okay" with being in your body -- feeling or not feeling a variety of emotions -- and simply, just be ready to listen.

I didn't reach this without professional help, and I'm still navigating my way through it all, but now I know: aloneness doesn't have to exist for me, or for you. 

As we evolve into higher levels of consciousness, we'll continuously reach places of "holy fuck this is so uncomfortable!" but I really believe it's those moments that force us to pick up our roots, and find better suited places that support our personal growth.

Am I happy? Sometimes. I'm often still very sad. Sometimes, I'm really damn angry. I still have those moments of "whoa, who am I?" But we are not one-dimensional beings with a small range of emotion. We are meant to feel. 

So, keep going. Hold on to those moments that give you life, goosebumps, tears of joy and even tears of sadness. To feel is to be, and finally, just maybe, I'm coming alive.

Part II coming soon.