In Pain but Grateful

Such an odd combination.

I have a been diagnosed with couple of ailments.  Hidradenitis suppurativa, Lyme disease & Costochondritis. They all suck individually, together they suck monkey balls.  The Hidradenitis causes boils and tunnels under your skin.  Lyme just attacks fucking everything and then Costochondritis makes you feel like you're having a heart attack.  Should probably add in the bulging discs in my neck as well as a recent discovery of a mild Chiari Malformation. 

Lovely, right?  

For the most part, I'm ok.  I can work & play and drive and be a single mom. I make dinner I clean the house (kids help) I garden, I spend time with my boyfriend, I do what needs to be done.  But every day there is either a headache or my ribs hurt or I'm walking funny because a new "alien" is trying to rear it's ugly self either in my bikini line (yeah like I'll ever wear a bikini) or under my arm and then it's goodbye tank tops. And every once in a while I just wake up exhausted and spend the day on the couch.  Thankfully I work from home and it's not an issue for work, but it is an issue for me.

I hide a lot.  Only if the pain is really bad do I say anything.  Otherwise it's pop a few ibuprofen and do what I need to do. I don't really have a choice. I have a life to live.

I really didn't start this post to whine, but more to just get it out.  It's my blog, right?  Some of the thoughts rattling around my skull about all of this focuses on my diet.  Why did I feel so great last summer to spend most of the fall and winter feeling miserable. 

Other than the addition of my amazing boyfriend, who did not cause any of this, the only other change was my diet.  I went back to eating carbs and sugar. 

Often I say I need to cut out the carbs to lose weight, but this isn't about losing weight.  This is about getting better.  I need to change my entire mindset.  I need to not give in, I need to be stronger in my resolve. 

So here is my game plan.  I need to treat carbs & sugar like I do mushrooms or wine.  I need to treat them like I'm allergic to them.  If you think about it, I am.  But instead of breaking out in hives or a rash, I break out in pain.  I'd like to stop causing myself pain.  

I rode my bike Monday for the first time since the fall. I did 2 miles. Last summer I was doing 14 to 15 miles a few times a week. I'd like to get back there. 

Late State Lyme Disease

Late State Lyme Disease

It sounds like a death notice... like "stage 4 cancer"

I know it's not, but it feels like it could be that way.

Saying I have late stage Lyme disease means I've had it a long time, which means it's going to take a long time treat. Very honestly the last time I remember having a tick actually with it's head IN my body, I was a teenager.  I remember it VIVIDLY because my father BURNED it out of my with a cigarette!  It was on my back.

We're talking maybe 1985ish...   Basically nothing was known about Lyme then so even if I did develop a bulls eye rash, nothing would have come of it.

But I very often was pulling ticks off Becca & Odie and if the tick was on my scalp or didn't stick around long, I may not have ever noticed having one.  All I know is that it's an old infection so it's probably been in my system since I was a teenager... we ran free as kids and spent a lot of time in the woods and bike trails down by the Raritan River in Piscataway.

I felt fine until the summer of 2011.  And the kicker is that I was in the best shape of adult life.  Seriously. If you go back in my blog you'll see me talking about losing 65 lbs, exercising, feeling great... even quitting smoking.

Then I started having weird symptoms, which were probably panic attacks, and on July 9th (my adorable nephews first birthday) was in the ER thinking I was having a heart attack.

41, no history of heart disease, in amazing shape... my only downfall is I was still smoking... well I just quit on July 4th, but how could I be having a heart attack????

I wasn't, there is nothing wrong with my heart.  So they figured I pulled a muscle. I hadn't done anything to pull a muscle... but whatever...

Now I'm not going to go thru my whole medical history, but in a nut shell, I was diagnosed with herniated discs in my neck & lower back.  Both checked out by a neurosurgeon who said neither were bad enough to be causing the symptoms I was having.

What I didn't know was that during that time I made the best decision possible. I switched doctors and unknowingly ended up with doctors who are "Lyme Literate."

"Let's run some blood tests & see if there isn't something else going on"

That's the first time I was tested for Lyme disease... and it came back with a possible positive.  Off to the neurologist who is also Lyme literate (Dr. Rhee, love this man to pieces)  He did further tests on my spine & nerves and also concluded that it was not the herniated discs causing the problems.

He wanted further Lyme's testing, however the testing he wanted done would be something I'd have to pay like $1000 out of pocket because my insurance doesn't cover the lab that does them.

Long story short, I put it off...  My regular doc said "bring the script in and we'll see what we can do"

When the chest pain got worse I finally went back to the doc to follow up on the testing... just a few weeks ago and it confirmed the previous test results but also showed tick co infections.

(just 1 of the tests I had done)

This is where my primary doctor change comes into play.  My primary doctors are Lyme's Literate.  What that means is that they know that even though I do not have every positive blood test the CDC requires to be considered positive for Lyme, He said "the CDC guidelines are crap, you have Lyme" 

So 12 days ago I started on what could be as short as 6 weeks but most likely will be a lot longer, course of antibiotics. 

I've got a friend who has a really really bad case of Lymes disease, so bad he can't get out of bed some days.  Between what I've seen him go through and what I've been reading about what could happen as the bacteria die off and release toxins....

I'm scared. 

I know I have support from my friends, my family and my amazing boyfriend (who I keep telling he can run away if he wants, but he doesn't) however, it's a scary path I'm on, & very possibly a very painful one. 

But as I posted on Facebook today, LYMES WILL NOT DEFINE ME. I will fight this with every fiber of my being. I did not work my ass off to get healthy and take care of myself only to be taken down by a 30 year old bug bite!