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)

Oceanside Portrait Shoot with Jessie Shaw (The Island, My Home)

Back in August, my friend Jessie came down to the Texas Coast to coach a swim meet. She's getting back into portrait photography, so she snapped a few shots near where I live. I was really excited about this because it's a short walk to the ocean and I wanted to capture the beauty of the place that's helped heal, change, and challenge me this past year. 

I've talked a lot about what "home" means to me -- on this blog, and often in little snippets on my Instagram. I've been hesitant to claim anywhere lately as such because, well, I've felt rather displaced. When I became too sick to live on my own in Austin, I moved back to my family's ranch in North Texas. Austin was the first place I lived on my own as an adult, and it was extremely hard leaving that life behind. I told myself I'd be back soon, but months went by, my illness unfortunately progressed, and I, overtime, had to let go of the life that existed before I became very ill. 

Last May (2015), I moved down to my family's little cottage by the sea on the Texas Coast, and I've since treated this little island as my home-base. It's a small town, without much access (fairly miraculous I've been able to access acupuncture and a body worker who specializes in chronic pain and practices reiki). But living by the water, as expected, has been extremely therapeutic for me. I'm a pisces through and through (hey, water sign), and feel most at peace, most myself, and most at-home near water. This past year has also been the first time I've spent substantial amounts of time alone since becoming very ill. It was, at the time, unknowingly helping build back my confidence. There was a time in my life where I couldn't stand long enough to make a salad, safely get back to my bed after a detox bath without blacking out, or drive my car. So living on my own for weeks (sometimes up to over a month) at a time, was definitely a necessary jump toward finding new boundaries, and taking the steps toward becoming an empowered adult(ish) again. I'm still fairly nomadic, in that it's pretty rare that I'm in any one place for more than a few weeks at a time, but this past summer, I was able to consolidate most of my belongings. I've let go of a lot of my things, and truly, felt a weight off my shoulders. For the past 2 1/2 years, I've had things in several cities across Texas. I felt so displaced, unorganized, and know it contributed to an overall unbalance of my system.

This May (2016), I packed up my childhood room at my family's ranch (my parents are getting ready to sell and transition to their next phase in life), and I finally cleared out my storage unit in Austin -- selling or donating most of the items I accumulated over the six years I lived there: the first couch I bought with my own money, art work I've created, art I've purchased, tons of knickknacks I've collected through travels and thrifting, and furniture I repainted and remodeled -- I kept my favorites and released the rest. I say release because it was just as much as an energetic release as it was a physical one.

It's been emotional, of course. I saw me in so many of these material items. "They are just things," I'd remind myself. But I think part of me felt like I was letting go of who I was - the young woman who was freshly out of college, working full-time, with so many wonderful plans and adventures planned ahead. (I was so type-A. Everything was planned. Oh, how I've learned to tune into my free spirited nature.)

But who I was is only part of who I am now. And for the first time, I'm really acknowledging and paying tribute to the woman I am becoming. 

Here's some of my favorite photographs from my portrait shoot with Jessie -- in the Gulf of Mexico, on the jetty, and along the sand dunes which home beautiful sunflowers and a mix of natural herbs and salty air that create the most wonderful scent I've ever smelled.

Check out her blog and Facebook for more!

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.