personal journey with lyme disease

Friday, July 10, 2015 – A New Beginning July 13, 2015

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My Friday morning started out the same as always: get up, shower, get dressed, have coffee, check emails, have more coffee, do a few puzzles and pay bills.  The rest of the day was unique to me.

I left the house at 9:15 to go to the bank and then make it to an appointment 40 minutes away.  After my appointment, I headed through the back roads of Wellesley, MA to Needham, MA to a gluten-free bakery and picked out two gluten-free and two regular cupcakes.  Then I wound my way to Rt.1 South and got an iced coffee at the drive-thru window.  I continued down Rt 1 to Newbury Comics where I found a CD Dave has been looking for and a used DVD “Office Space”.  It was close to 1 o’clock and I was hungry so I had one more stop at the Canton Library to pick up the next two books in a series I am reading and then I headed home where I ate and sat for a few minutes deciding whether or not I needed a rest.

Forty minutes later I was out the door and stopped to pick up coffee K-cups and got the chance to see my youngest, Meg and chat for a few minutes.  Then I went to Wal-Mart to shop for paper goods and items that are less expensive and work in my budget.  It was great to wander aisles and not worry about the time.  I left and stopped to put gas in the car on my way home.  It was after 4 and I decided that I had done enough and the gym would have been too much.  It was a good decision.

Doesn’t sound all that exciting, does it?  I didn’t go for a manicure or take myself out to eat, BUT what I did do was DRIVE myself everywhere!  After 9 1/2 years of not driving or working, I had finally gone for a new permit and had passed the road test (easily) on Tuesday, July 7, 2015.

Almost a decade of being dependent on others.  Never in a million years would I have imagined that it would have taken me this long to recover enough from 4 strains of Lyme and 10 co-infections and simply be able to drive by myself.  I know my family and close friends understand.  I know my Lyme friends get it.  I thought being able to go to the gym almost every day since April was incredible.  I thought being off antibiotics since mid-April was awesome.  I thought walking to the library and taking out books that I could now hold and read was so freeing.  Then I drove again by myself.  The shit-eating grin, the tears and the loud music were a medicine like no other.

Thank you to everyone who supported and believed in me during this process.  I knew enough to stop driving, so I trusted myself to know that I was well enough to drive again.  My son-in-law, Scott, called me a teenager the other day for the way I was acting.  Then he and Amy took me out to dinner to celebrate my achievement.  Yes, we let Dave come along.

Donna, Amy and Dave, your kindness and patience chauffeuring me everywhere for past decade go beyond anything I could put into words.  I also know that you will always be there for me, but now maybe I can be there for you. xoxo


One Ringy Dingy, Two Ringy Dingy….. March 12, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:18 am
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After four rings, it went to voice mail.  I quickly left a message and wondered if it would be returned.  I had no right to expect it to be and if it was going to be returned it could be anytime in the future.  Twenty minutes later my phone rang…………

“Hi Kath, it’s Dad.  I’m so happy to hear your voice.  I can’t talk right now as I am at work, but I had to call when I saw it was you.  Can I call later?”  “Whenever you get a chance, Dad, I’m home all the time.”  “OK, I’m so glad you called.  I love you so much. Bye”  “Love you, too, Dad, bye”

That was my first conversation with my Dad in over a year.  In fact, the last time I saw him was at my Mom’s wake in November 2011.  I wasn’t sure that he would even show up, but something told me he would be there.  I even had some old pictures to give him if he showed up as I realized that when my parents separated when I was 12, he didn’t get any photos.  My sisters and I had been going through the old albums while we spent a lot of time with Mom in her last few weeks.  There were so many pictures of his side of the family, that I felt I had to take a few along with some holiday photos from when we were young.

At my Mom’s wake it was quite busy and I was at the head of the line, even though I have an older sister, but I was basically stuck there with a chair and my walker.  I caught him out of the corner of my eye the minute he came in.  He made his way through old neighbors and friends and nervously came through the line.  My older sister, Anne, and her family have kept in touch with him so he was relieved she was right there to greet him.  The next obstacle was my younger sister, Donna, who had so much baggage from my parents that it wouldn’t fit on a jumbo jet.  My sister opened her arms wide and hugged him tight.  That’s when he started to cry.  He moved onto John, her husband, then Dave who hugged him and I was the last one before Mom.

I moved the walker out of the way and held onto him as I felt his skinny body shaking and could smell the cigarette smoke on him.  I whispered in his ear that I had something for him and would give it to him when he was leaving.  I took him to re-meet his granddaughters and meet their boyfriends.  I left him alone at the casket.  He couldn’t stay – it was too much.  So I reached in my bag and pulled out a package of pictures and handed it to him saying, “I have a lot more that you need to catch up on.”  He cried some more, I said I would call him soon and he left.

I did call him, but it was the week after Christmas 2012!  I know I didn’t have the best of years, and it’s not like I didn’t think of him.  It’s just that this is my BIGGEST flaw – I despise making phone calls (and I get that from him).  Just to add in a little more info here, before my Mom’s wake, the last time I had actually seen him was seven years ago at my nephew’s high school graduation party!  Oh, he lives 1/2 hour away from me.  I have been in this house for 14 years and he had never been in it.  So, yes, there is history, there is doing what you believe is best for your family, and there was the lifting of any old anger from these family members once my Mom passed.

My father holds no ill will that it took me so long to call.  He is just happy as a “pig in shit” that I did.  He is 74, recovering alcoholic, smokes like a fiend, has tattoos, has a pierced ear and loves the opposite sex.  He works at a home and garden store fixing machines and loves it.  He is not mad that his life did not turn out as he expected, which was to retire to St. Thomas with my stepmother (who died of cancer ?8 years ago).  He is not mad that he is tight on money after all those years preparing for his future and having the stock market crashes kill those dreams.  He is Dad, Papa Don, as happy to be telling jokes as he is to be listening to stories.

We have talked a few times and he has finally seen the inside of my house.  We went out to lunch that day and talked for over two hours.  We talked the day of the blizzard “Nemo” where he was telling me that he was going to be headed out after noon to drive around as the government officials in Massachusetts had said to be off the roads by then.  He doesn’t care for our leaders and he doesn’t like being told he can’t do something.  I owe him another phone call as the rest of February was pretty rough for me.  In fact, I am going to call him at noon today and leave a message if I have to because I know he will get back to me.

Life is too short to let the past keep you there.  If Amy hadn’t mentioned whether it was okay for her to invite Dad to her wedding, I would have put the call off.  Even though they don’t have much of a relationship, she remembers him going to her dance recitals and being at birthday parties and was being a bigger person than I had been.  Thank you, Amy.  I like having my Dad back in the picture.



Time to get back to blogging March 5, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:21 am
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Hello to anyone who follows my blog and please accept my apologies for the last few months of not blogging.  I really need to spend just 15 minutes a day to write something, so this is day 1 and here I go:

I have had the great fortune to reconnect with friends that I have not seen or talked to since school days.  One of these friends, Cindy, is just the same as I remember her in her mannerisms, voice and eye contact.  She is brilliant, funny and truly listens when you talk.  I decided to start my blog with Cindy because we have been going for coffee here and there and she has been very interested in my Chronic Lyme as I have been in her agoraphobia and anxiety.  She is a consistent writer and blogger and is so very open and honest about her life and struggles which makes her very brave to me.

Cindy also complimented me one day and it stopped me in my tracks as I usually respond to compliments with sarcasm or self-deprecating remarks.  This is what Cindy said, ” You are so gracious in your illness.”  My mouth opened to make a quick retort and my mind took over and I said “Thank you, what a lovely thing to say.”  That statement comes back to me over and over and the meaning of what she said does not lessen, it grows.  Is there anything more lovely that someone could hear who struggles just to get out of the house and do something as simple as go for coffee and chat. Cindy has no problem coming over to pick me up, doesn’t mind when I have to cancel due to medication issues and understands that I’m good for 1 1/2 to 2 hours and then she brings me home.

Am I gracious in my illness?  I believe that I have always tried to be as nobody in my family or friend circle had anything to do with my contracting Lyme.  They have been there every step of the way watching me suffer during the years of bad doctors, then good doctors with medication that makes me sick as I try so hard to rid myself of as much of Lyme and it’s co-infections.  They take me to appointments, they wait with me, they speak up for me, they comfort me, they understand when I don’t want company and when I just need it quiet as my mind is making enough noise on it’s own.  My husband, Dave, my sister, Donna, and my oldest daughter, Amy are always giving their time to take me places.  They, along with my friends, also just take me out to get out of the house!  I know if I am in a bad place, I have learned to just say I am and that I don’t mean to be short with anyone, I just can’t put on an “act” at that moment.  Otherwise, I like to smile and laugh and not let this disease become who I am.  Yes, I talk about Lyme a lot and how I am feeling as Dave needs to know.  I talk about it if friends ask.  I post a lot on Facebook to Lyme groups but also on my home page as I am trying to get as much information out to the public as I can.  When I apologize for not talking, Dave says that I do not need to apologize as I am the one going through the pain that he sees etched on my face.  He says it is just hard to watch.  I believe him as I don’t know how I would be if I had to watch someone I love go through this process!

So, whether I am gracious in my illness is in the eye of the beholder, I guess.  I do know that Cindy’s comment has left an indelible imprint on my heart and I am happy to be able to recall those words when I need it.  Thank you, Cindy.