The Journey Continues

Hello there!  It's been a long time since I've posted. 

Healthwise, I'm hanging in there and I'm still stable.  I developed pseudomonas a few years ago.  It's a non-contagious bacterial lung infection that can't be killed off after it colonized in my lungs.  I've learned to live with it... when I get a cold it flares up and causes a really wet, plegmy, disgusting cough.  We don't treat it with antibiotics because we can't kill it off anyway and my symptoms are mild if I do some really good self-care.  It's a nuisance but it's manageable.  Doesn't affect my lung capacity.  I have also developed "spots" on my lungs, likely from the pseudomonas.  They move around (clear and reappear in a different area while staying the same size), so we're just monitoring them. 

Physically, I'm staying active and that's causing issues too.  Which is hilarious and very frustrating.  I have Gluteus Medius Tendonopathy.  Yup.  The dreaded Dead Butt Syndrome.  Guess all my elliptical and spin and hiking and walking don't use ALL the glute muscles.  Huh.  Through UCSD I'm working with an Osteopath and a massage therapist who does Jin Shin Jyutsu.  JSJ is interesting and I did an intense 3-day class with her to learn more on self-healing.  It's a form of acupressure and energy flow.  I started Pilates to help my ass and found an instructor I really like (corrects my form in agonizing detail).  My former dancer body and soul really love those in-air rond de jambes.  And holy cow I am getting much stronger.  I forgot how amazing it feels to be that strong.  I feel like a damn she-beast some days and it's awesome. 

Mentally, I'm doing okay.  My therapist and I concluded a few months ago that I have PTSD which is helping me understand my triggers and issues MUCH more effectively.  I knew that I wasn't doing too well.  I've been avoiding interacting with people because I've become terrified of my angry reactions when I'm triggered.  And you guys- I meditate.  Daily.  I do yoga.  Daily.  I exercise.  Daily.  I keep my stress low.  I am doing everything RIGHT.  But something wasn't working...  I was still feeling so much rage and I felt so alone as people just watched me slide down the rabbit hole time and time again, which didn't help things.  I was SO distraught.  Jeff has been a lifesaver (literally).  He has started to notice and write down what triggers me and then he asks me tons of questions so 1. I can detach from the trigger and 2. I can get to the source of the issue.  I haven't been depressed in several years, so I know I'm making progress even though it doesn't feel like it.  One layer at a time I guess.  First layer- years of trauma!  Enter shitty coping skills and self-hate!  Then depression!  Next up- PTSD!  After that?  Who knows what I'll peel back!  But it'll be fun! 

I recently read the Washington Post article about the guy who survived Ebola but struggled with PTSD.  I read the article and couldn't believe how much it mirrored some of my medical story.  He recommended a book called The Body Keeps The Score by Bessel Van Der Kolk, MD.  I'd heard of the book, but after this article I immediately ordered the paperback (cheaper than Kindle) and got it a day later.  This book is FASCINATING.  My brain function has been altered, which I find super interesting.  Just positive thinking (#blessed #grateful #kissmyass #barf) and talk therapy ain't gonna cut it.  I'm reading this book and crying and underlining and having epiphanies and underlining and developing a better plan.  It also aligns with the EMDR I've done/ am doing.  I am very excited to be on the waitlist to start biofeedback and neurofeedback at UCSD in Feb or March, which will help change how my brain functions.  I must find a way to deal with the PTSD, as I will always be dealing with hospitals and doctors and the mistakes (including serious and life-threatening mistakes that have already happened) that occur from docs not hearing me when I raise concerns.  They are triggers from which I can never escape, although UCSD is better than most.  In case you're wondering, insurance doesn't cover any of this.  But as Jeff says, "Well, this might be cheaper in the long run, especially if it can help curb your shopping habit..."  Thanks hon.  It's actually called A COPING SKILL.  Geez.  And I'm really good at it, btw.  :-P 

If you have any desire to know more about trauma, I recommend this book.  I know the title is... not great.  Forget the title.  It's not important.  He starts with biology and anatomy of the brain.  Then he writes about his clients (Vietnam vets to rape victims to car accidents) and case studies and what has and has not worked to integrate and resolve trauma.  He spends quite a bit of time with childhood trauma (both physical and emotional abuse) and how, if unresolved, it causes changes in the brain and genes that then get passed down through generations (epigenetics through methylation and the microbiome).  Actually, all traumatic experiences can cause issues down the line if unresolved.  It's powerful and so, so helpful.  Be warned- it's not a light, frilly book.  But he discusses trauma in an approachable way and most importantly, ways to actually integrate it so you can heal.  And for an MD, his ego is kept in check by his desire to learn and help people. 

I discovered HeartMath a few years ago for heart rate variability but have not yet purchased a monitor.  It's been used quite effectively to treat many issues and has scientifically backed research.  As I read the book about PTSD and a lack of heart rate variability I realized I should purchase a monitor to effectively track and help me change my heart rate.  I have no issues randomly buying $80 worth of oolong tea online but for some reason I can't fork over the $150 for a monitor that will probably really help me.  HA!  Such is my life...  I also get exhausted from trying new things so slowing down the addition of new isn't bad.

The meditation app I use is Insight Timer.  It was recommended by a therapist I follow on IG.  I like it much more than Headspace and Shine.  I love the variety of meditations (guided, music, binaural beats, chants, etc).  I normally do a guided 10-ish minute meditation.  They don't advertise, so if you haven't heard of it don't worry.  Just get a free account and check it out.  You can choose super short (around 5 min) meditations if it seems overwhelming to start.  I paid for a subscription so I'd have access to all the courses, some of which deal with trauma.  I'd been doing a trauma course before I read The Body Keeps the Score, where Van Der Kolk mentions much of the same terminology (exiles, managers, firefighters, etc).  It reassures me when I'm hearing the same terminology across multiple sources. 

I could write a book on all the things I've tried over the decades.  Truly.  Some are quite kooky.  And in a few more decades, I'm sure I could write another.  I've read a library full of self-help books and can recommend some great ones, but to get real change you have to DO something small DAILY.  I started with at-home yoga.  Then about a year later I added a short meditation.  I've started doing some Jin Shin Jyutsu flows.  Does it work?  Who the hell knows.  Can't hurt.  Might help.  I pretty much avoid FB and my IG has been scrubbed and scrubbed and scrubbed.  I am ruthless.  It feels amazing to decide what doesn't align and then unfollow.  My feed now looks like how I want my thoughts to act- mostly positive, real, raw, filled with color, beauty and a bit of snark.  Scrolling ALWAYS makes me happy.  If scrolling your feed doesn't make you feel joy, you should fix that shit.  I love the endorphins from exercise.  I do that as much as time allows.  I pet and snuggle and breathe in Max as much as he'll let me.  He won't be here forever.  I do the same to Jeff. 

I am feeling more hopeful than I have in a long time that I can find the me who is buried under all the bullshit.   It is A LOT of work.  It's exhausting and it's not always fun.  I have to remember to pendulate- work hard on healing and then rest completely.  I haven't had a strong negative reaction to a trigger in almost a month, which is a pretty big deal.  And I'm not dead yet.  So something I'm doing must be working (shopping? :-P). 

So what's the reality of all this?  That trauma changes brain function (shuts off some parts or hyper-engages other parts).  I am a different person than I was pre-disease.  Physically, mentally, emotionally.  I am trying to navigate the waters into which I've been dumped.  I feel like they are unfamiliar, unfriendly and unrelenting.  I am tired.  I've tried fighting the current and flowing with the current.  Neither seems to be the correct answer, as I often feel like I'm drowning no matter what choice I make.  I think I need a different raft or a boat, but I'm too freaking tired to build one- haha. 

As you can tell, I go from exuberant and hopeful one minute to despondent and lethargic a minute later (although the hopeful periods ARE getting longer).  Which is why I haven't posted.  People don't want to see the messy middle of mental and physical health issues.  They just want the happy triumphs.  The overcoming-hardship success stories. I've mostly stopped telling my story because people's eyes glaze over and they just want to talk about themselves anyway.  It's good for my listening skills!  Or it's supposed to be delivered in a short, funny, yet powerfully emotive way.  Concise is not one of my strong suits.  There are others who have better words and better platforms and better pictures and better stories. My story and voice are valid, but I don't have to put it all out there either. 

One final note.  If you have not purchased and read The Boy, the Mole, the Fox and the Horse by Charlie Mackesy you need to get on that.  Stat.  I got the hardback so I can hold it.  I read it a few times a week- to remind myself.  I'm not kidding.  It's that good!  Your age is irrelevant.  You can read it to your kids.  Read it to your grandkids.  Read it to your parents.  Hell, I read it out loud to myself.  I really hope he comes out with a second book.  The author's soul is so beautiful that I just want to hug him.  We all need some beautiful soul-light in our lives.  Wishing all of you a happy and healthy 2020.

Hiking in Sedona in my second attempt (11 yrs later) to find and feel the Vortexes.  Didn't feel anything.  This is also the trip that broke my ass after the long car ride (hiked 7+ miles through the pain anyway) and I forgot to pack underwear (thank god for Target in Yuma)... so... don't forget boys and girls... pictures don't tell the whole story.