personal journey with lyme disease

Fourth of July: pre-Lyme and post Lyme July 4, 2012

Filed under: Uncategorized — iammorethanlyme @ 8:38 am
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I signed off from last night’s blog saying Happy 4th and then got to thinking how this US holiday has changed so much for me.

Pre-Lyme and when our girls were young, the 4th was a great day.  Our fireworks were enjoyed either from a hotel room in Boston that a very good friend with 6 kids would rent so we could watch them in style.  One time she rented a suite and we stayed the night and woke up with 9 kids sleeping all around us.  It was fabulous!  My big contribution was bringing everything needed to make lots of Shirley Temples for the kids (and me) to drink.  Little umbrellas were very important for those drinks!

Many other 4ths included going to see fireworks in our hometown (and now current town) on the 3rd.  We could park at Nana and Pa’s and walk to the school field.  There was always one of the girls who couldn’t take the noise and ended up wearing these big headphones we had (I don’t know where they came from) and I now wish I had taken pictures of their little heads with those big headphones!  The next day, we were either at Grandma and Papa’s for a cookout and pool time where I got to cannonball the little kids and start the whirlpools.  The most daring thing one could do was get Grandma’s hair wet at all, so I settled for running cold pool water down her back.  Papa was a danger from outside the pool with water guns or the hose.  He got as good as he gave!  There was always too much food, but no restrictions for me on what I could eat.  Then as Papa got sick and it was too hard for my Mom (Grandma) to have it at her house, we started going to my older sister’s home.  By now we had 9 kids between me and my two sisters.  We would bring Grandma and Papa over as they loved the kids.  My sister, Anne, is a grill fiend, so there was food galore, I provided homemade goodies and Donna brought her famous pasta salads.  Anne had a great pool and a beautiful deck her husband, Larry, built and we just spread out, ate and swam.  Oh, yes, we used sunscreen 🙂  Those were the great pre-Lyme days.

Before I even knew I had Lyme, I was terribly sick for over 3 years.  The symptoms now all fall under Lyme, but no doctor would even mention it and I hadn’t thought of it as a possibility.  Anyway, during my sick years, fireworks were impossible for me to go to due to severe sensory issues – sound, visual and crowds – and every mosquito bite swelled to the size of a quarter.  But the girls and Dave still went with family.  Going to my sister’s house was just as much fun for everyone but I suffered the whole time.  I hurt just from preparing desserts, I couldn’t be out in the sun or heat for more than 15 minutes without a rash blooming or feeling faint.  I could not use the pool as my muscles would spasm and after the first time I scared everyone (including myself), that was that.  Plus the pool was in full sun!  I was wearing sunglasses full-time as my eyes had become so sensitive to light that I spent most of the time in Anne’s house which was great as there was air-conditioning.  I also felt out of place as I didn’t want everyone coming in to spend time with me when it was so nice out.  I’ve never like attention.

Sad note: during the past 7 years of my illness, Nana, Papa and Grandma have died, so Dave’s Dad (Pa) is the only one still going strong at 84 and adored by all.  It has definitely had an effect on all holidays.

Present:  Girls are grown and go with their boyfriends and others to fireworks wherever they want to see them.  they all have plans for today.  Anne and family moved to NH almost 4 years ago and their kids range in age from 18-30, so they pretty much do what they want as only the 18 year old is in NH.  Donna’s girls are 18 and 15 and they have their own plans, too.  So, Dave and I are going to spend today with Donna and John at their house and just relax in their air-conditioned home and grill if the rain lets up.  I am able to bring my tollhouse bars for a treat at least and can make them myself instead of instructing Dave!  I do have to give him so much credit for all the cooking and baking he has done over these last 8 years so that holidays would be the same.

Finally, I did make a joke and ask Dave if we were going to the fireworks last night and he said, “No way, you can’t take the noise, you can’t look up and the mosquitoes love you!” – I love this guy!  So to everyone in the US – enjoy the 4th anyway you can as I know we will be happy hanging out with my sister and her hubby!  Kath


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