personal journey with lyme disease

Thank you, Donna! February 12, 2012

Filed under: Uncategorized — iammorethanlyme @ 10:34 am
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Yes, two blogs in one day.  My sister, Donna, visits every Friday or takes me to an appointment.  This Friday we went to Macy’s as she needed makeup and I was looking for a pair of shoes to wear to a Bat Mitzvah the next day.  We walked in to a sale and as I hadn’t been shopping except in the virtual world, we ended up spending 2 1/2 hours just in Macy’s!  I was done as my sister told me and my body was telling me and as we were walking out I tripped which made Donna grab my arm and assist me to the car.  We get to my house and I can’t even push the door of the truck open to get out.  I’m mad.  Donna stops me right there and said, “You are your own worst enemy”.  That was followed by, “apparently you are not done learning the lesson this hideous disease meant for you to learn”.  I actually started to cry.  I wasn’t mad at Donna, I was mad at lyme and having all these limits still.  Yes I can walk right now without even a cane, but I’ve already noticed some setbacks in my balance and even working out I can’t maintain the weights I was doing.  Why?????  I figured when I spent 3 days at the Registry trying to get my license back and ended up with a permit book to be followed by a road test.  Of course, I realize this is the right thing – I haven’t driven in 6 years.  I was trying to put lyme behind me and you cannot do that.  I have Late Stage Lyme disease along with multiple co-infections and parasites.  I have lesions on the left side of my brain – the cognitive side.  I seem to be the only one expecting to be everything for everyone again.  Dave says to me that I’m still sick and he is aware of it, so why can’t I accept it.  I know I’m going to have relapses for the rest of my life.

So yesterday after the beautiful Bat Mitzvah, I come home and check my email and there is a message from Donna.  She doesn’t email much.  I printed it out and forwarded it my two daughters that don’t live here.  Now I am going to rewrite it here (I don’t think I’ve mentioned just what an incredible person she is):

Hi Kathi!

I’ve been thinking about you since yesterday and I decided that you are truly incredible.  You are dealing with an illness that no one in the medical field can even comprehend.  You are literally on your own – so, how do YOU know how you are doing or how YOU are supposed to be doing?  No one does.  But guess what? That is not YOUR fault.  I know whose fault it is – wanna know?  It’s Lionel’s.  Lionel the lyme bug.  This is his fault.  When you are having a bad day, it’s Lionel’s fault.  When you muscles are feeling weak, it’s Lionel’s fault.  When you eye are weirding out on you, it’s Lionel’s fault, balance problems – yup – it’s Lionel – not you.  When you are having a good day – Lionel must be sleeping.  A good week – Lionel must have gone on vacation.  Unfortunately, he may be back but that’s  not YOUR fault – it’s Lionel’s.  We don’t like Lionel, as a matter of fact, Lionel is one big old fucking pain in the ass!  And that is who you get mad at, that’s who fault all of this is – not yours!!!  You can yell at Lionel – he deserves it.  He has caused you pain, heartache, despair, made you feel miserable, made you feel like a failure, made you feel less than you are.  Lionel is starting to learn how strong you are.  That you are a fighter and you are not going to back down.  You are finally on your way – Lionel is gonna keep pissing you off and you will just have to yell at him.  You will tell people that Lionel is giving you a hard time when you aren’t feeling well or that Lionel has decided to give you a break when you are feeling strong.  Everyday is a new day.  Lionel is part of your world (and I am so sorry that he is), but he is the one to blame – not you, not ever you!

I love you, your know that, I am also so proud of you.  (But Lionel sucks!)

All my love, Donna xoxoxoxoxoxo



3 Responses to “Thank you, Donna!”

  1. robin hall Says:

    This made me cry Kathy, but in a good way. I am glad you are surrounded by wonderful people as you manage this awful disease.


  2. Donna is awesome , but so are you !! As for Lionel, he stinks. i hate him.


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