Out!!

So today was the third attempt to retrieve the capsule/camera thru a colonoscopy-dilation,and it was successful! Funny thing is Dr. Legnani didn't have to take the camera out, it was already out. Too funny.  People think that it was a waste, but it was necessary to stretch the scar tissue anyway. So a happy day!!! Yea. 

It's still there!!!

The colonoscopy went well, in that,no perforation, but my doc couldn't get the camera out. My stricture is too stubborn. I feel bad because the first question I asked when I woke up was, "did you get it out?". When he said no, I cried.  Really, in the spectrum of problems, having a camera that is tucked away comfortably should not be a reason to cry. Pity party minute for sure!  So back I will have to go for a third attempt.   

Colonoscopy/ Dilation, again

Here I am in NYC, at my amazing friend, Deb's, apartment. Dan and I are getting ready to head to Mount Sinai hospital for the second time in 2 weeks. You see, in March I swallowed a camera/ capsule to see how my Crohns was doing back then. The camera has been nestled in me causing me pain and almost blockages. My fingers are crossed that this goes well without any complications. I am wearing my Be Brave bracelet for Crohns and my Gramps cross for his luck. Wish me luck!!!

Happy 5th of July

Happy Belated Birthday America! I have had a happy couple of days.  I went for a 12 mile bike ride with my son, went to the town pool and had friends and their sons over for dinner.  These are the things I appreciate. I guess the simple things. 
I was diagnosed in1985. I was sick and ended up hospitalized for a week. They actually discharged me without a diagnosis. I remember sitting on my living room couch hysterically crying because I had undergone so many tests, embarrassing tests, and nothing, no answers.  I remember my first colonoscopy.  I actually wore my underwear to the procedure I had no idea what was to happen and then as they wheeled me in the room and realized I still had them on, I was told to take them off.  Of course I needed a bit of help. So embarrassed!!! Oh then the most uncomfortable and yet another embarrassing test- The lovely Barium Enema. I recall, " hold it, just hold it..." trying to figure out why everything comes out of me,now they are forcing liquid in me and I have to "hold it" Awful!
As July5th comes to an end, I am thankful for what I have. Even Though my stomach has been acting up the past 2 days and my lips are huge, swollen, chapped and itchy (I am thinking it is a side effect from Humira) I definitely have more positives than negatives. Health & Happiness!

Fun, normal day

Weather has been strange here on Long Island. The weird weather didn't stop me from playing golf with my dad, for the first time of the season. I dont care what my score is. i just like to play,  I like the quiet. No worries, I woke, ate a waffle, drank a bit of coffee then off I went. I am usually sick in the morning,before work, I teach, and then fine for the day. But I don't usually follow that pattern during the summer. Summer, I feel like you, normal.  
When I was diagnosed in 1985, I was a junior in HS. Before being diagnosed the doctors told my mom that i was sick because I was nervous because of the upcoming SATs...didn't feel nervous. All I know is that the morning routine then is the same as now. I wake up, eat, shower,get sick and then I head to work.  As an adult, when driving to work, and still feeling sick, I speed to work,  30 minute commute, if the lights cooperate and I pray that I make it without any kind of accident. In HS, I would have to head back home and then be late to school, yet again.  And I hate to be late!  
I like feeling good. I like doing things without worrying about my stomach. It is hard to believe that for about 16 years, I didn't worry at all!! I definitely miss those years!

First of many?

So, does it make sense that I am starting a blog after almost 30 years of being diagnosed with Crohns Disease?  I have a wonderful life- 2 incredible sons, a loving husband, supportive parents, an amazing friend, Deb, good friends, and a job that I love. Yet, this disease affects all of those people. Do I have the right to share, explain, complain, when many more people are suffering far more than me? Or is it I?   When I was diagnosed in 1985, a junior in High School, I never took the time to truly understand the long term impact that this disease can have on a person. In a way, it was a good thing but there is always the other side, the bad side.  Why didn't I learn, study, help to fight this annoying, painful, embarrassing, harassing, debilitating, sneaky disease? I was at the perfect age to help make a difference, so now I plant the seed in my sons that maybe they will find a "cure" to Crohns rather than just meds to mask the disease.