personal journey with lyme disease

Where does the time go? February 24, 2012

Filed under: Uncategorized — iammorethanlyme @ 10:01 am

I have been wanting to blog for the past few weeks and I cannot for the life of me figure out what kept me from doing it.  That’s not entirely true as I have been extremely irritated with Lionel Lyme as it decided that I couldn’t spend time out of my house three days in a row without mowing me down for the next ten days.  I didn’t want to admit it was Lionel that made me sick, off balance, leaving burners on, burning myself on a daily basis, not remembering things and repeating myself, having word loss again.  The worst of it was, I was not able to go to the gym and that really brought me down.  It was just for a week, but I felt like Lionel was winning again.  I also knew that going to the gym could be dangerous with my balance issues and I didn’t want to do anything too embarrassing.  I also seem to have lost strength again on my left side. 

Now that I’ve complained, let me tell you that I have a great trainer at the gym.  He spoke with me on the phone and told me to “let it go”, this might happen off and on while we figure what my body can handle and he would see me next week.  I went Tuesday and there Bobby was waiting to talk before starting my session.  Not having dealt with a Chronic Lymie, but apparently reading about it, he told me that maybe we had stirred up Lionel and his buddies with our workouts because if you ask me to do something, I’m going to do it.  It’s just in me, especially when it comes to exercise which I have so dearly missed these past 8 years.  I’m thinking the harder I work, the faster I can get back in shape and feel even better!  Bobby has decided that we need to work more slowly while adding in some cardio work and still sweat (which I happen to be very good at!).  It’s so good for me to go to the gym as it is in my town and I know a lot of people and I think I have a bit of a following as many of them saw me start there with a walker, progressed to crutches and now I walk in on my own!  I so desperately need this social part; hearing the music, having quick chats with others, going on other days by myself and deciding what I want to do for my workout.  I have been housebound for over six years!!! Yes, I saw people when they came to me, but I did not have the freedom to leave my house on my own and always need someone to take me to appointments or sometimes to lunch as I don’t drive.

Now about the driving matter – I have to take a permit test and road test!  I don’t mind as I don’t think I’m better than anyone else, but it took three days for the Registry to figure this out.  Short-term memory issue and memorizing a permit book should be interesting.  The good thing is I don’t have to wait six months to take my road test.  If I pass my permit test, I can schedule my road test right there and then.  Just to get in a car and go someplace by myself because I want to  will be such a great freedom!  There is no way I can ever thank my sister, daughter or husband for all they’ve done and the patience they have shown taking me to wherever I have to be, so I hope seeing me get better is enough for them.  If it isn’t………………….just kidding – they LOVE me!  I will think of something anyway to thank them once I have my license.  Happy weekend. Kathi


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



The small things in life

Filed under: Uncategorized — iammorethanlyme @ 9:27 am
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I haven’t been good about blogging and I have plenty to write about, but I have been a little busier with a new schedule I am trying to follow to readjust my sleep cycle with the need to get up at the same time every morning and use a sunlamp for 1/2 hour, walk at noon (which is great that I can), going to the gym working with a trainer and thinking I can do more than I really can at this point of my illness. I was so impressed with my cousin’s last blog that I am going to do the same thing right now: list all the things that make me happy just as they pop into my mind – here goes: sunrise, sunset, planets aligning, meteors showers in the middle of the night, my daughters, my husband, even my old dog, music, reading from the Kindle my girls got me, working on crosswords again, playing cribbage, playing Peggle or Mahjohnng Dimensions on the computer, my sisters, my cousins, walking without even a cane, smell of baked goods, baking, my trainer Bobby and his enthusiasm for my drive to get better, online shopping, babies laughing, my husband laughing, anyone laughing really, catching up with friends in person now, having so many real friends on Facebook so that I feel connected to the outside world, the ability to look forward to things now, all the foods I can’t eat, rain hitting hot pavement, snow, watching the world turn green in the spring, flowers and flower beds, still having a swing set with kids in their 20’s, my girls boyfriends, St. Jude, and, lastly, waking up every day to find something new to appreciate.