A JOURNEY WITH NO REAL DESTINATION

In December of 2010 I was diagnosed with Lupus/Mixed Connective Tissue Disorder. In March of 2011, I was diagnosed with Ehlers-Danlos Syndrome, type 3. The MCTD/Lupus Dx was incorrect, they should call EDS "ACTD", (All Connective Tissue Disorder)!
Since my Ehlers-Danlos diagnosis, I have read a few wonderful blogs that have inspired me and touched my heart. One blog brought me to my knees; I cried, my heart broke, I laughed, I smiled and I identified with this Katie's story. Reading her journey made me realize that I wanted to share my own.
Details are not something I spare and I have never been a girl of few words. I hope I inspire you, educate you, motivate you and touch your heart. I hope by writing this, I learn, understand and accept my new journey...Is there a destination?

Monday, April 16, 2012

Magnificent Monday!!!



It is an absolutely beautiful day here in New York, Although I know some people don’t think so! It is HOT outside and inside at some places. One of my friends here is a Pediatrician and I just got a note from her saying that it’s 90 degrees in her office! Whew! Can you imagine all the sick little babies in there and now they will be sick and even grumpier! Poor babies and POOR Elisa! I’ll have it cold enough to hang meat when they come over tonight! 
So! Onto Monday’s Minute and my goals that I have set for myself this week! My “To Do” list of sorts!
  1. Go to the gym 5 times. 2 days cardio and 3 days of mild cardio and weights. 
  2. Do 5 pull-ups a day (hey, I am trying!)
  3. Decrease my sugar intake and drink less Coca Cola!
  4. Continue to stay away from the real and fake cigarettes!
  5. Figure out WHY my hip is hurting like this...Other than I have EDS. I can usually figure this stuff out but not this one and it’s relentless! Booo you hip!
  6. Keep my sanity once Andy leaves on Wednesday! 
  7. If it stays this hot I’ll have to manage my time in the sun! My POTS (Dysautonomia) and to much heat don’t mesh well!
  8. Drink 2 liters of salt water a day. 
  9. Do a minimum of 10 nice and unexpected things for people. 
  10. Tell 5 people (that I don’t usually tell) THANK YOU and how BLESSED I am to have them in my life. 
  11. Try to drink 3 glasses of red wine this week (I’m working up to 4, per Dr. LaVallee). 
  12. Park on the furthest part of the parking lot so I walk further. 
  13. Smile more, give more hugs and laugh!
So, those are some of my “EDS” goals for the week. Some aren’t really related to EDS but I put them in anyway! 
I’m looking so forward to my visit with Molly! It’s going to be a great weekend! Can we fast-forward to Friday please? I'm also dreading my honey leaving, I miss him when he is gone! 
As for a prolo update for you “loyal followers”: I am doing well post prolo day 3. I have no pain or even discomfort from the injections. I tried to get Andy to pop my back last night and this morning and he said “I don’t want to hurt your prolo!” I told him to hurt the prolo, I am all out of whack. He won, no snap crackly pop  happening here today!
Have a blessed week and remember to SMILE! 

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