‘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.