The answer is (sometimes) right in front of you

I sometimes like to get lost in those “fairy tale” sort of movies- you know, the predictable sort of ones; boy (or girl) is love with a girl (or guy), who doesn’t notice them, but by the end of the movie they “live happily ever after,” realizing the one person or thing they were searching for, was there all along.

This of course only exists in movies…sort of.

For about 7 years now, I’ve been searching for my black and white, labeled, clear cut answer (to Lyme);

A. This is what’s wrong with me;
B. This is how I can fix it;
C. Then the problem is solved
– end of story.

I’ve been in possession of a letter written by an infectious disease doctor to my pediatrician, when I was first diagnosed with Lyme disease in February 2002. I’ve given copies of this letter to the infinite amount of doctors I’ve seen-whether it was relevant or not- but did include all those doctors, telling me all these years, “You are crazy; there is nothing wrong with you; see a psychiatrist; there’s no such thing as post-lyme/chronic lyme, whatever you want to call it…”

Letter Part 1
Letter Part 2

I’ve had this letter in my hands for many years- yet somehow failed to see that the whole time, if I had relapsed and/or was infected with Lyme disease again (which both scenarios did occur), that it was recommended I have IV antibiotics. What the letter doesn’t show, and again I only realized this TODAY, was that in January 2001 and twice in November 2001, I had come complaining of fever, aches and chills- it was interpreted as the common cold/flu and I did not disagree with the doctors diagnosis. I was TERRIFIED of needles and refused to go to the doctor when I was little. I do know I lied when it came to talking about my knee pain. Once I was told there was a possibility of the orthopedist wanting to drain the fluid from my knee, I lied saying I felt better- I had suffered from pain and swelling in my knee a week or two before I went to the doctor too. I specifically remember this because the pain got so bad, I took the old crutches we had in the basement, as I was not new to using them, because I always getting hurt playing sports. My mom refused to let me go to school or use the crutches unless I went to the doctor.

I said I would go as long as they didn’t give me a shot. I didn’t imagine needing blood drawn.

I was that terrified kid who needed all the nurses and my parents to hold me down for a finger prick. The only way my parents would get me to go to the doctors for a check-up was to bribe me; skipping or leaving school early for the day wasn’t enough- I had to get a new toy or get ice cream—after I had to get my blood drawn, I finally got that Bedazzler I always wanted! I wish I still had it. I wish I got to get ice cream for every time I had to get lab work done.

A few months ago, I only found out I also had (have) Rocky Mountain Spotted Fever (RMSF), another tick-borne illness. The doctor who ordered the tests never told me I had it; I was technically in the normal range- anything .87 & above was considered positive. I tested .84 – give me a break.

I was not only bitten and infected with Lyme disease a second time- but how I did not read those few sentences, all those years!? How could I have missed the fact that if any symptoms/relapse or another tick bite should occur, that I may need IV antibiotics!? Yes, I was 12. Yes, I could take into consideration, I didn’t understand a lot of it–I mean, I’m still learning every single day new things about Lyme–the fact that it was overlooked, not only by me and my family, but the countless doctors that have this letter in their files, stashed away somewhere, collecting cobwebs–or in fact, the first few pages of my chart in some cases- for I only went once or twice to many doctors after they said there was nothing they could do for me.

All those years of wasted time- all those years I could have gotten my life back- was only treated (according to the recommendations in this letter) in late 2011.

It’s been 10 years I’ve had this letter in my nightstand. 10 YEARS.

In two weeks, I’ll be twenty-four years old.

For over 12 years, I’ve slept next to this piece of paper that held my fate. The answer was physically in front of me and I didn’t see it.

I know I shouldn’t go down this road…but why. Why this. I was just beginning to accept the fact that I have this horrible chronic illness and it sucks. But that’s life and it will only make me stronger. But this…this just felt like a slap in the face.

Sharing what it is like to live with Lyme disease & other chronic illnesses to spread awareness; health advocate;

5 Comments

  1. I’m sorry, girl…*sigh*…so easy to look back and have “I wish I had done that differently”…I was feeling the same way today. I knew I was never the same after my initial tick bite back in 2005..but I mindlessly listened to my Dr. who said I didn’t have Lyme Disease. I wish I had pressed in and been like…”No, something happened when i got bit…I haven’t been the same since. I know that tick gave me something”…and I wish I would’ve kept fighting. But i was 18…and believed EVERYTHING the Drs. said. Now I know we have to be our own Drs. sometimes…and take a stand. It’s hard looking back and wishing we had done something different. But at least we have today…to start making changes today.

  2. Reblogged this on kaylyme and commented:
    My friend is a Lyme Warrior!!

  3. So will you try to get IV now?

    • Already had a midline & PICC line in 2011 for 4/5 months- had to pull them after developing contact and allergic reaction dermatitis. I’m now allergic to rubbing alcohol, any sort of adhesives, betadine, etc.

      • As we say here – “how pants!”

        You’ve really had the shitty end of the stick. 🙁 Hugs, keep your chin up 🙂

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