Where I'm at now: March 2018

Since I began my fundraiser roughly 17 months ago, I've had three surgeries, and an alternating protocol that has consisted of injection medications, immunotherapy, targeted prescriptions, supplements + vitamins, and herbals + tinctures...

I've also focused on chiropractic work and body/structural work for my chronic pain and migraines. I found a very affordable option locally, and this has helped me make some positive steps forward in managing my persistent (though fluctuating) pain.

But - the last few months have been rocky. I took a break from my trips to my treatment center, life plans didn't quite work out how I anticipated (oh surprise, oh surprise!), and after 4 years of consistent, and at times, aggressive treatment: I pulled back. 

To be frank, this decision wasn't under the guidance of my doctors... But I was *so* burnt out on my health dictating every facet of my life. My treatments and health concerns were at the forefront of every single decision and purchase. This wasn't a way I wanted to live anymore; and almost overnight, I developed an aversion to my pills and injection therapies. So, I just kind of ... quit. Crazy, right?

I found myself in a weird place -- I have so gratefully come such a long way from where I began, but I felt stuck with my lack of noticeable progress and circumstances. Then, I got this winter's dreaded flu, and a resurgence of certain symptoms (namely fatigue and my dysautonomia) came raging back. 

What I have done lately (while avoiding most of my pills and needles) is a lot of self reflection and healing regarding my mental wellbeing (more on that later)... and after a lot of consideration, meditation, and a generous donation (as much as I hate to say it, finances definitely matter when seeking treatment), I feel ready to pursue more support for my body (and mental wellness) again. 

I've been very quiet online - I have a list of blog ideas in a notebook by my bed, and half written drafts that have gone unposted. My Instagram (which had been a major creative + emotional outlet of mine) is now sparsely updated. I was sick of sharing. And I was sick of consuming.

If you've inquired, and I've been a bit short or unresponsive, please know it was because I wasn't in a space where I felt I could answer. It was never personal... I just felt like I had so much and so little to say all at once.

I've worn every emotion on my sleeve for years. I've shared almost every up and down along the way in such a vulnerable, public manner. Each health update, the next plan or hopeful step forward, the inevitable disappointments, the many silver linings... all documented on the web. This helped me create a platform to help others, and I don't regret it one bit.

But I found that revealing that level of vulnerability became exhausting... and while grateful for the role of advocacy and awareness it brought forward (and the support network it created), it was no longer serving my personal path to healing.

As I type that, I wonder... will people think I'm selfish? I don't want to abandon my community. But I need to reframe it.

For the first time since I began my journey to reclaim my health, I started doing things privately. I focused on myself. I did what I wanted to do, unashamedly. I protected my own energy like a fortress because I was done. The tank was depleted. I wanted to go about my treatment (and life) the way I wanted to without everyone watching each step. And sometimes, I wanted to do nothing at all.

A good friend of mine texted me this during a recent heart-to-heart,

"I feel like I've dredged up everything from my heart and suffering that I have to offer... I can't do it anymore. But also, not doing that anymore makes you irrelevant to the community."

We shouldn't feel this way. But the truth is, without constant reminders posted online for all to see, it's easy to slip into the shadows. 

But we all need to make time to disconnect. For me, that meant support groups, my personal social media sites, this blog, More Than Lyme; hell, it even meant disconnecting from the words LYME and ILLNESS. And while I don't think isolating yourself (or stopping treatment) is the "right" decision, it's a bit where I found myself. Of course, I realize ... there is such thing as balance and despite my particular brain's wiring, it doesn't have to be all or nothing.

So now, it's a better balance that I seek.

I realized (again) that I will never be "in control" of my health. I am constantly adjusting my views, trying new things, evolving, and of course - sticking with what works when I find it. My idea of happiness and "healthy" can change from day to day... So I'm finding beauty in the fact that we can define each of those things to fit wherever we find ourselves, at any given time. 

Ideas evolve. Expectations change. And when we stop resisting, we continue to grow.

So where I'm at now:

I'll be heading up to my treatment center (Holistic Healing Arts) for a couple of weeks in March. The first week while in Washington, I'll be doing a series of treatments called *neurocranial restructuring with Dr. Hillary Lampers, overlooked by my main ND, Dr. Katie Dahlgren. The following week I'll be at HHA doing daily doc appts, and whatever else we feel is appropriate for how I'm testing (IVs, injection therapies, LDI, body work, acupuncture, PK/emotional work - all treatments I've found effective and even transformative with targeted timing). 

I do want to say that truly - from the bottom of my heart - thank you. Thank you for all the support you've all given me along the way. Thank you for all who still check in after all these years. Thank you to those who send their love, good vibes, and prayers. Thank you to all who have donated to my fundraiser which has enabled me to continue treatment. Thank you to those who continue the #lymedontkillmyvibe (and #morethanlyme) message. And thank you to the friends I've met along the way. 

I've been in a funky place, but things are getting better. The time will come when I'll feel more open and ready to share - but for now, I'm honoring what feels right. Sometimes we learn a lot by being quiet.

*Neurocranial restructuring is a nonsurgical cranial manipulation that addresses poor nasal breathing, migraines, depression/mood disorders, immune issues, and chronic pain (among others). For more on NCR, see this YouTube vid

To donate to my fundraiser, visit my YouCaring page.

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


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. 


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!