personal journey with lyme disease

I am Kathi; I am not Late Stage Lyme December 7, 2011

Filed under: Uncategorized — iammorethanlyme @ 6:48 pm

I have always been thankful for everything I have in life including 29 years of marriage to Dave, 3 beautiful daughters, 2 sisters and their husbands and children, cousins and many friends.  What I am not thankful for is Late Stage Lyme disease.  I do not understand what lessons I am learning from the chronic suffering, the endless medications, the loss of my ability to work or drive 5 years ago, having to go on disability and still having trouble making ends meet.  I have never waivered in my faith and do believe that there is a reason for everything we go through in life.  I just never imagined this would be an all-encompassing disease involving the help of so many people just to get through the day.

I have learned that I am not indispensable; people can feed themselves, do their own laundry, food shop, etc.  That was important.  I know that I have had to learn to live my life differently and make choices that I don’t always want to, but have to for my own health.  It is very hard to start to withdraw socially as lyme causes excess anxiety and panic, but also it is very tiring to go to parties and gatherings with a lot of people where you need to put on your “face” and try to act better than you feel.  I am not one to want to spend a lot of time talking about how I am feeling.  That has caused problems with family and friends as they cannot read my mind.  Friends love to say, “But you look so good”, and I know they mean well and do not have it in me to tell them that they are only seeing what I want them to see.  My husband has learned a whole different meaning of patience as he has to stay calm while he tries to decipher stories that I start in the middle, why I have trouble writing a grocery list, why I can’t just answer a simple question.  Who wouldn’t be frustrated – I know I am!

I thought I was going along with life as I should: working in Pediatrics for 19 years and loving almost everyday; taking care of elderly relatives as it became necessary and being a good Mom and wife.  I thought I had learned a lot about empathy and have always been humble.  My best quality if you asked me was my humor – to make people laugh makes me happy.  Sometimes my sarcasm was a little over the top, but it hit the mark.  I still have that ability and even try to make the doctors laugh.

As this is my first blog, I’m trying to think of how I will go forward.  Should I try to educate, tell my story or maybe do both.  If anyone sees this and has any ideas they would be appreciated.



5 Responses to “I am Kathi; I am not Late Stage Lyme”

  1. Rose Fox Johnson Says:

    Both Hun. Wonderfully put.. Educate and put your story out there. it can be very therapeutic. Yes a sense of humor is needed to deal with any illness.


  2. I’m so proud of you, my wonderful cousin, Kath. You go through this horrible diease with so much grace and courage. I don;t think i’d be half as brave as you. I’m so happy you’ve started a blog – i think it’s a great outlet and I agree with rRose – educate and tell your story, and you know I love your humor!!!!!


  3. robin hall Says:

    If you tell us your story you will indeed educate us. Please tell us more….


  4. Chris Varano Says:

    I enjoyed reading the start to your blog and offer my encouragement to keep going. You are a wonderful story teller and write with such flair. I will enjoy reading about your life and hope to gain a better understanding on this terrible disease. Good Luck!!


  5. Brenda Huber Says:

    Without this blog I would have never understood what you have been living with. Your FB posts gave me a little glimpse into life with Lyme but your blog entry was a real eye opener to me. Thank you for sharing.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s