Catastrophe Anniversary

It’s my Catastrophe Anniversary!? I considered a party – wait what, no I didn’t.  These infections have gifted me with too many sensory issues to be able to comfortably be in a room with more than 3 people who are vocalizing above a whisper, music makes my ears burn, and overhead lights set my brain on fire.  I would take a gluten + sugar free cake though, please and thank you.

Three years ago, I got Rocky Mountain Spotted Fever, but thanks to a cluster of inept physicians, went undiagnosed for 9 months, leading to the upheaval of my life.Mostly dormant Lyme, at that point, 11 years undiagnosed and now reactivated because of RMSF, clawed it’s way to the surface, contorting what was my active, happy, functional life into a stagnant, mostly homebound, sometimes bed-bound, brain-fogged existence.  Reminiscing without a grimace is difficult.  Those chapters seem awfully far away, like I need a time machine to remember who I used to encompass.  I still need to squint at the old photos of Jill.

The amount of trauma that was dumped on me in such a short amount of time, while my health was ripped out from me, has been a huge factor as to why I initially got even sicker and sometimes, why healing was halted or hit a plateau. 

Trauma of lost friends and friendships/relationshits (not a typo) because of their lack of support or belief of my health issues.  Trauma from outside issues unrelated to health, but that have been extremely high stress events that have taken an immense toll on physical and emotional health.

Ongoing medical PTSD/trauma and gaslighting has been an extremely damaging reality that has absolutely hindered my recovery progress at times.  It took a while to start addressing this (in therapy, EMDR, energy work) and luckily it’s helped me deal with it (anyone suffering with this really needs to properly figure out how process it), but the anxiety I feel going into appointments with new practitioners is intense and terrifying and the PTSD continues.  I need to prep myself for days ahead of time, writing notes and standing in front of the mirror practicing often inevitable arguments.  It can be a case of Fight, Flight, or Freeze with these scenarios and physicians.  It’s not just me, this is the norm with tick-borne diseases and other chronic illnesses.  Clearly, there is a huge and horrible malfunction in the medical field that needs a serious adjustment.

My full time job is advocating for myself during and after these appointments.  It’s exhausting but necessary.  I’ve learned that the general medical profession is not out to help patients.  Empathy, understanding, and compassion is severely lacking in this field.  They are not there to listen or to take us seriously.  Profit over patients, of course.  It’s been made crystal clear to me and others in this community that most view the hippocratic oath as a pretty funny joke.

It took years, but thankfully, I do have a solid core medical team now.  I’m very grateful for my Lyme naturopath who I know has my best interest and healing at the forefront.  But, I still need to see new physicians from time to time and those appointments are always cause for concern.  I have to advocate for myself.  You have to advocate for yourself.  And please advocate for others if you are able.

…The initial attack happened while I still had no idea what was going on with my body.  I felt like a punching bag with doctors, whispers in the background, misdiagnoses, being mocked to my face, eye rolls, no diagnosis, nonsense people and practitioners telling me my immense list of symptoms were all in my head.  Throwing random medicine at me for nor reason.  Wasting my time while my body was breaking down and the medical field continued to betray me.

The so-called healthcare system was suffocating and mistreating me (ongoing)…A common theme with Chronic Lyme and other hidden diseases.  Desperate for answers, I was in an abyss with no light, and it was caving in.

Once I was finally able to get  some of the answers I was desperately needing, the path to reach the doctors and treatment I needed was full of potholes and roadblocks.  The energy and maneuvering it takes to get to the goalpost in this cruel game is incredible.

I’m on my second Lyme doctor, this time a naturopath, and I know I’m in good hands with someone who really cares.  The first one set me back quite a few steps,  and am I a little bitter?  Yep, of course, I have issues with this, along with the multitudes of other practitioners who have wronged me.  I’m allowed to, I don’t let it crush me, but I’ve always been a fan of justice.  The fact that these people made me more sick is definitely a problem. I won’t ever be quiet about the serious issues of the medical system and the CDC, and how they have set me back, made me more ill.  In the Chronic Lyme community, there is so much mistreatment and dismissal from medical practitioners and it needs to be an ongoing discussion.  I’m here to do it.

I’m currently on my third treatment protocol for Chronic Lyme, first for babesia (because my first LLMD refused to treat me for it), and second for bartonella.  Heavy on the herbs, supplements, and other modalities, fewer rx’s this go-around.  My body is appreciating this approach, and my daily detoxing has been stepped significantly.  Though I just reached the max dose for the main med on my current protocol, and I will say I am on the ground with the herxing and fatigue.  Treatment is so difficult, but I’m dedicated.

There’s been no denial (depression and a whole lot of depersonalization, yes) in adjusting to The New Life, how could I deny it?  I was right in the middle of the train wreck.  I often float around in a chaos bubble, puzzle pieces that may never match up.  My energy and my brain sometimes have a difficult time connecting the dots, and I view my past self and prior life in tunnel vision.  I still don’t recognize the image in the mirror.

Perhaps one day I’m supposed to attempt to redefine myself, while maintaining the crumbs leftover from The Past.  I can patch together something; I know who I am at the core.  But the magnitude of change I’ve undergone has absolutely solidified a new world view.  I’m not insinuating that the way I see things now is a bad thing, and in fact, I think despite the deteriorating road that got me here, it’s a much healthier and safer mental  headspace and existence for me – a newfound forcefield, as I’ve learned I need much more of a buffer when it comes to shielding myself from a lot of…what life and people offer.

I’ve learned what can and will impede my progress, but some things are of course out of my control.  So many curveballs that can potentially be thrown and have already been hurled directly at my throat.  But the things I’m able to navigate and manipulate to avoid those fissures, I will actively do.  Life looks and feels so different because of that revelation, and that has to be okay.

My daily routine would make most people pull their hair out.  It’s full of chugging herbs and pills, a whole list of detox methods, often lying on the floor just staring at the ceiling in silence while my tinnitus whooshes and screams  between my ears.  I stare at my cabinet and fridge full of boring low-copper food.  On my mediocre energy days, I rejoice that I’m able to do pilates (this is a huge step in my progress, cardio is still a pipe dream).  The amount of bad movies I watch is embarrassing – subtitles, low volume bc of hyperacusis.  Endless snuggles with Ptarmigan and conversations with my salamanders.  Going in public is seriously dreaded and avoided as much as possible. I spend a lot of time seriously assessing all of my plants (and there are a lot of plants!).  What are your hobbies, Jill? I guess those are my hobbies now?

My view is pretty great from my house and sometimes I place a stick figure on the mountains, because that’s how I view myself – physically fragile and no longer the athlete I used to be.  I don’t go up there anymore,  but at some point, hopefully my strength will return, but I’ve prepared myself that a 20 mile day hike is likely not in the future anymore.

A perk for me, is that I enjoy being by myself and alone does not equate to loneliness for me.  Solitude is welcome, that’s never been an issue for me.

My sources of happiness are fewer and far more particular than what they used to be, but I value them highly.  I hold those close to me much closer.  I value the safety of my home immensely.  A hug and conversation from my mom and dad means everything.  Ptarmigan, my giant cat,  sleeping in a cute position and just existing in my life makes my day.  A new leaf on one of my 200+ indoor plants is cause for celebration.  I can still hear the sagebrush sparrows in my yard out of my right ear (but not my left, because I lost most my hearing due to tickborne infections).  My new cacti shower curtain brightens up my bathroom and the tiny $1.50 rescue orchid now has 9 blooms on it.  The Western Fence lizard (Craison) coming back to my porch to make a nest for the 3rd year in a row is wildly exciting.  There is a Say’s Phoebe pair who have nestlings on my porch as well.  My salamanders make me smile every day.  I still enjoy watching New Mexico monsoon season from my yard.  A new fuzzy blanket? Glorious.  The loyalty of my true friends is a beautiful thing.