‘Other People Out There Have it MUCH Worse than You Have it…’

‘Other People have if far worse than you do’ does not make me feel better.

It makes me feel worse. 

As someone that’s always been empathetic to a self destructive extent, this pains me more, for two reasons:

  1. now I’m thinking about how awful some people have it, many people that I know, especially going through months of treatment.  People who have lost their children, either, to angry, fed up, or addict spouses, or, family members that have given up on them.  I even met people who had lost children, some by their own hand. Now I’m sadder, and sicker, thinking about them.  That hurts me.
  2. when I’m dealing with pain, physical pain, with my immune system on the floor, and I’m suffering so much pain inside, and feeling shame and embarrassment for that pain, guess what, pointing out how awful others have it, with diseases that people understand, only makes me feel more ashamed that I can’t overcome this.

I know others have it worse. 

I think about it, I read about it, I am unable to watch the news because it can be so upsetting I have nightmares.  At 42.  Why do I have to be ashamed of that too?  I pray for those that suffer.  But that doesn’t change the pain I feel.  I guess it’s supposed to help if you are feeling sorry for yourself, I get that.  In The Program, they talk a lot about ‘getting off your pity pot.’  A-men.  There have certainly been times I heard that.

But I’m fighting, I promise you.  When my body allows for it, I am trying to move forward, trying to follow the path intended for me.  I listen to Affirmations, Meditations, Motivations, Philosophy… 

But let me tell you this.  Chronic Lyme Disease STOLE MY LIFE for nearly 3 years.  The two years prior to that, it just progressively eating away at me slowly robbing me of function. I don’t even know how many years before that it was an active part of my life, eating away and using up my insides, what part it played in years of mysterious illnesses, in my using.  My push-through mentality probably only cost me that much more time in my healing and comeback.  I’m still battling through it every day.  What can I eat, how much activity is safe, what must I do to get enough sleep, and to ensure that sleep with be restless enough that it’s not all for naut. 

Mayo diagnosed my with Fibromyalgia shortly before my Lyme diagnosis.  Mayo!  They sent me to so many doctors, SO many tests, Cat Scan, MRIs, vial and vials of blood, never testing… They some problems, but no explanation for them, so, you get you pink slip to the Fibro clinic.  I’d been at Mayo, for my second back surgery in April of 2016, the spent May there doing all the testig for the pain, weakness, brain fog (what felt like disappearance)…the list felt endless.   Then in July at death’s door (had God been willing), I got my Lyme Diagnosis.  And it was an impressive one!  I broke some records.  One’s mycotoxin level would be between 0-2800 or so, I was at over 37,000.  Over 3x higher than the highest my Lyme Specializing Psychiatrist* had ever seen.  I was walking MOLD.

*Whole Health Chicago, who had rushed me in after a phone call – their wait list was over 3 months, they got me in 9 days after my call.  I can still recall how insane if felt to wait NINE DAYS.  I didn’t know if I could survive one more let alone nine.  I couldn’t even lift my hands some mornings.  My swollen, burning hands with fingers I could hardly bend it was so painful… Upon my visit, they made a call to their trusted Psychiatrist out in Lake Bluff, IL, Dr. Donald Raden, and got me rushed in to see him as well, because I was in BAD. SHAPE.  In every way.  I remember it about 45 mins away.  I thought, ‘I’ll never make it. what if it’s one of the worst days. how will I ever get that far away? what if i can’t get back?  if I miss it they’ll think I don’t care enough…’  This comes from someone that once rode 20 miles daily on a bicycle all over Chicago only a few years before.  I’d go anywhere, any distance, and know my body would get me back.

It’s fucking Lonely

As almost anyone (my bet is on it’s actually everyone) with Lyme and/or Fibromyalgia will tell you, it is a lonely fucking disease.  At least it is today.  As any with chemical dependency will tell  you, it’s a lonely fucking disease.  I thank God regularly that addiction has come far as come as it has in being more understood!  Lyme has a long way to go in that direction.  It’s possible that I think of addiction as even more accepted than it may actually because a) the amazing responses I’ve seen from people about my own struggles (seems everyone knows someone! right?) b) I personally don’t give a shit who know about my issues with chemical dependency.  From addiction, I feel like a 100% Survivor.  What I saw, in the end, in my own experience, I dare anyone to argue that isn’t a disease.  That it isn’t damage to/in  your brain that’s running the show at some point.  I was just stuck in the body along for the ride, screaming to get out and being shoved further and further to the background.  And it was hell.  A shame consuming, lonely, exhausting, hell.

Chronic Lyme/Fibromyalgia is not understood.  They are often diagnoses based on elimination.  I tested positive for Lyme (at 3 places, Whole Health in Chicago, 3rd Opinion in MN, and, Tri-Life Health in Fort Collins, CO), but see, the Lyme tests they use at you regular doctor, are totally outdated, haven’t been updated for 50 years so there are all these strains they don’t pick up on, and those test don’t even consider all the bands that can be read on the tests, as they do on the correct, current, testing such as IGeneX.* As for those with any familiarity know: Lyme spirochetes are sneaky little BASTARDS.**  To the point it’s just impressive, really. 

I hope that in the future, I will be able to spread Lyme awareness, in the hopes of saving ANYone from even the smallest amount of pain I went through, physically, and/or emotionally.  I also hope to get rich so I can throw a bunch of money at it so those of us that get sick, don’t spend 10s of thousands of dollars at the integrative doctors that take 3-6 months to get in too when you are too sick to even work but no one gets that because ‘you look fine,’ and disability isn’t even going to GLANCE at you with these diagnoses…

*IGeneX Criteria:

Based on internal validation studies, IGeneX established the following criteria:

Positive: If two or more of the following bands are present: 23, 31, 34, 39, 41 and 93 kDa.

Negative: Any profile that does not meet positive criteria

CDC/NYS Criteria:

Positive: If 5 of the following 10 bands are present: 18, 23, 28, 30, 39, and 41, 45, 58, 66 and 93kDa.
Negative: Any profile that does not meet the positive criteria.




Starting a blog. Anxiety is real.

“If you want to conquer fear, don’t sit home and think about it. Go out and get busy.” -Dale Carnegie

I kinda want to puke.

I put off doing anything like this for years, because it was too intimidating.  Too scary.  Involved a level of vulnerability I was entirely incapable of.  I found even Facebook to stressful.  

I’ve been journaling so much lately. 

I think  journaling helped me survive the childhood.  It gave time to my introvert, when I spent the rest of the time playing an extrovert.  But there was a time someone read it.  A friend of a parent that I’m sure thought, ‘how cute, what might this little girl be writing about in her little bitty DIARY…’  Well, they were surprised and what that little girl could be writing about.  And my family blew up.  

But they blew up quietly.  As quietly as humanly possible to the outside world, as quietly and they could amongst themselves, and certainly quietly around me.

But back to today.  I decided to just do it, as part of my 365 days of being alcohol free.  It’s been 20 years since I felt confident trying something new, taking a leap, putting myself out there.  And even then I had the assistance of alcohol *then in order keep up the success I started, along with extrovert I portrayed, drugs had to join in the reindeer game).

I started a Poshmark site 6 month ago.

Reselling fashion treasures I found this last year helped give a bit of steadying to the complete destruction I was trying to rise up again from.  I have visual from the Land Before Time.  When the plates are shifting and it’s suddenly all collapsing all around them, things as they know it all changing, you can see other dinasaurs just falling in the to chasms and they just run and run trying to stay on solid ground while that beneath them falls. Suddenly it stops, are they left with chasms between them and those they love, and all they can do it figure out what to do now, head toward the safe, healthy place that is left.

All I really want to say today is this: starting this was far worse that I’d anticipated.  My brain spun in to full hurricane mode. I went from the therapeutic journaling I’d been doing, here in that same living room that my little diary was found some 35 years ago to forcing myself to share personal words of mine with the world. 

Maybe no one ever feels truly safe journaling.  But I know I’m never able to write a work without a sense that someone might read it.  My secrets have never been safe.  Only a year a half ago, I put my faith in people I trusted to pack up an apt I’d never get to see again, and someone then, read my journals, then passive aggressively alluded to it, then didn’t speak to me.  I’ll never understand the drive to read another’s journal.  Not since my crazy jealous days of late teens/early 20s.

So doing this went from a fun idea, to a powerful idea, there was hope, then…then came the even so gentle swirling, ideas, thoughts, everything would get to lengthy, to convoluted, start over.  Well what does that say about me?? Start over.  But I want to touch on everything about me, ha! Start over.  Meanwhile, I lost whole days to non stop ideas for a domain name,  giving brain storm a whole new gear, I literally couldn’t stop!  I’d try to distract myself, watch tv, read, no to bed, go to an AA meetings, I had to keep ‘storming’ I’d physically have to run away from myself. Then in to the frustration in trying to set it up, because I prefer to jam the peg in the hole, then step back and read which hole it was even meant for, then step back and see if there even WAS a hole, anywhere, at all…let along the size and shape. 

I posted a post. 

Then chopped it off and just left the first few paragraphs.  Posted.  There.  I did it.

Sweet mother of…I slept like crap!  Woke with my stomach in KNOTS, suddenly certain that the domain name I’d picked was horrible!  Embarrassing, stupid, inconvenient, inappropriate, maybe even illegal!?  So I had to get out of bed as soon as physically possible, ablaze in full Lyme and Fibro symptoms, to CHANGE THAT NAME!  And change that gobbledegook first entry, what is SOMEONE ACTUALLY READ IT, somewhere out there in the random web universe, since I hadn’t shared with anyone I know, of COURSE. 

This was a sickness I hadn’t felt in a long time.  But fuck it.  I’m doing it.  I altered the domain name a little bit, yet again, making it just a little more difficult, but, I learned more!  And this is going to be my far too long, babbling, touching on very little really, about me, entry. 

And if anything I ever write here makes someone angry, irritates someone, makes someone think I’m stupid, mean or self indulgent.  I don’t fucking care anymore.  That’s what I have to do to get to the other side, so here goes…