It's Always Summer...

You may find my title confusing, as it is winter but yesterday I found hope in a young woman named Summer. Summer was a 16 year old girl who's life has inspired so many. She died just a little over a week ago but she left a legacy of hope and fearless refusal to give up on life. When Summer was diagnosed with cancer just a little over a year ago-she didn't think "what about me?" she thought "what about them?" Summer created a nonprofit group to help other kids with cancer and raised over $60,000. This group's goal was to help kids in whatever way it could to help make cancer more tolerable.

If you are more interested in Summer's foundation please visit her link http://teamsummer.org/

I will not go into more details but the bottom line was-she was this amazing person who did not let the weight of cancer bring her down. My aunt, who was her nurse would share all the funny things that Summer would do or say and would have us rolling in the floor. Summer kept on laughing and kept others laughing even in the face of something so scary as death. I'm amazed that a kid could be so happy and so funny even when facing what most teenagers and adults are never prepared for.

Summer was funny as hell and loved to curse. She wanted to live her life and even told her nail technicians boldy that she didn't pay them to talk about her cancer...she paid them to do her nails" Life did not revolve around her cancer although it arguably made Summer who she is/was.  I cannot help but stop and think-how do I approach life? Since lyme my approach to life has been much altered. My life is defined by my limitations and not abilities. By bad days instead of good.

I think of a story my aunt told me about Summer. Within 5 days post brain surgery, Summer was discharged and swimming in a pool with her friends. Her determination and passion for life is astonishing. I sometimes cannot manage to get off the couch or become afraid that if I "overdo" that it will cost me the quality of the following days. I live my life worrying about the outcomes of every action-every step, every bite of food, every pill or probiotic in my medicine cabinet. What if I stopped worrying about what I can't do or what I'm afraid I cannot do and just lived life blindly just taking it one day at a time?

I think I've come to the realization that  I do not need to continue paying the price in advance for my good or bad days.From now on-what if I lived every day as if it was the last day of summer? With no idea whether tomorrow will be rain or sun-just knowing that today it's warm and the weather is fine...so JUST LIVE.

Thank you Summer for helping me live my life...as if it's always the last day.

And thank you for letting me know that when you're sick...THE F word is sometimes necessary! :-) 

Lymes research

http://www.poughkeepsiejournal.com/article/20121118/NEWS01/311180034/Lyme-treatment-guidelines-flawed-researcher-says

This new article amazes me...one of the fellows really thinks that people who still have symptoms are just merely re-infected. So you're telling me....that 60% of all people who have lymes are getting bitten again and again and again! IT MAKES NO MATHEMATICAL OR SCIENTIFIC sense!!!!!

Beach Day with VERD!

I woke up this morning and it is 100% different than yesterday.. I was rested after a tough few days and I took a very long walk on the beach with the dog. I felt good today-it was good to get out and stretch my muscles. This morning has made up for the hell of the last few days. The good days come less and less but I am so thankful for them. I even cooked a gluten free turkey last night! And gluten free buffalo chicken for lunch this week.  I pray the rest of the day goes as good. THANKFUL for good days and that I get to go home to see my family this week! Not sure why but the turkey picture is upside down! Either way it's yummy!

Living Lyme 2: Treatment 2 weeks in

Tonight is Saturday night and unlike most single 27 year olds, I am sitting on the couch watching Homeland with my beloved dog Verdell.I am exhausted after one trip to the grocery store and an excruciating long week at work. I find my weekends must be dedicated to sleep or I cannot function on weekdays. I'm becoming more and more isolated as my friends go about "business as usual". I have always been a secret loner but this disease has caused me to become a complete hermit.

I don't recognize myself in the mirror any more. I was once this thriving beautiful person who was full of life and hope. I now look in the mirror and see the results of the disease traced across and aging tired face. My personality has also changed...I'm more aggressive, angry, and upset over the slightest thing. No one knows me any more...hell I don't know myself.

My emotions range from sad, to mad, to plain defeated. Tonight I am defeated. I am sad for the life that I lost. I wonder if I should come to terms with the fact that I will never again know Kylie Jo. She is dead to me. The person I once was is a person I'm not sure I'll ever be again...ever see again. It makes me sad. I want to cry for the person I have lost. It's like losing a loved one-even though you know they are gone...you still answer the phone hoping to hear their voice, you go to familiar faces and see them around ever corner, and you mourn them in your dreams at night.

Tonight I hurt and ache like i have the flu. I have chills and sweats along with this deep foggy feeling that I describe as "brain blink". There are dishes in my sink, clothes in my floor, and the bed is unmade. I feel like that poem by Yeats:

    Turning and turning in the widening gyre
    The falcon cannot hear the falconer;
    Things fall apart; the centre cannot hold;
    Mere anarchy is loosed upon the world

My center cannot hold...I am spinning out of control...I can only hope that it will stop spinning and my life can be set straight again.