Sunday 11.15.2009 Exciting Title I Know!

Hello everyone! Just wanted to start off by thanking everyone who is apart of CDSN. I truly never imagined when creating this network, that people would actually find it. For years I lived my life with great friends, family - but never really knew anyone else with Crohn's Disease.

For me this is turning into an incredible experience. Before CDSN I had never created anything on the web, outside of my personal blog. Hearing the feedback from everyone have been humbling, cathartic, surprising, and somewhat life changing. I've made new friends who can fully understand. When I was diagnosed in 1999, after 14yrs of never knowing what was wrong. I was 19, a point when I was ready to finally embark on MY LIFE. Needless to say, staying in University or holding down a job was challenging. I always wanted to help people, since I was a kid. I had tried returning to University to be a social worker...still only have 4 credits lol. Long story short, I finally feel like I'm accomplishing something with my life; something to wake up for - helping people.

For way too long, I lived my life with Crohn's Disease running it. I've been on disability since 2005, I rarely want to leave the house for numerous reasons - whether it be a bathroom, pain, nausea, fatigue, worry of infection cause of a compromised immune system from Humira...I could go on. I felt *and kinda still do, working on it!* that staying home is easier - when there is a wonderful world around me that is in no way getting fully taken advantage of. In a way creating CDSN has started to help me re-enter my life; step out of limbo and start living again. I've kinda always been a relentless optimist, and never going to let Crohn's the best of me. I am DONE letting it run my life - I am ready to start living again, one day at a time. I am tired of Crohn's ruining so many wonderful opportunities, and relationships...I am someone LIVING with Crohn's NOT someone SUFFERING from it. Sure I know it's incredibly unpredictable and can never know really what is going to happen...but what is the worst that can happen? ....Will never know unless I try....

Thank you everyone who has taken the time to read this...for being a CDSN member..for wanting to spread awareness about Crohn's Disease...for educating yourself in understanding the wide range of complexities that comes with Crohn's Disease...for being brave to share your stories.... Together as a community, we can let the world know about Crohn's Disease- put faces and stories to a disease that far too long has only been something people have heard of, or know someone living with it, but truly doesn't understand it.

I am going to stop rambling now... best wishes to everyone.

-Jason

A Happy Halloween....

Hello everyone! Just want to first off thank everyone for being apart of CDSN! Everyone's kindness, words of encouragement, and rallying have really helped more than any of you will ever know. I am also excited about the domain I purchased going into effect. http://www.CrohnsDiseaseSN.com I bought the domain through go-daddy woo hoo! Just another step in helping the network grow, to help out as many people as possible. Remember also, tweeters #CDSN hash tag and @CrohnsDiseaseSN for the network! Thanks!!!

I had an alright week, recovering from bad flare up last week. I took it easy pretty much all week. Today was nice, I got to go over to my sisters house. and visit with my nephews and her. It was so wonderful to see my youngest Nephew as I have not seen him since he was 2wks old; he's 7mos old now. I posted some pics, in his adorable little skeleton outfit. It was so nice to get out of the house, and have some fun. Being on the Humira my immune system is compromised. I've already had to be pulled off twice due to infection. My GI basically told be to quarantine myself - so I haven't really seen a lot of people lately (another reason I am so grateful for CDSN as it's an outlet for me).

I saw my GI on Monday, and she feels everything should stay with Humira. I don't know if it is working as well as when I first started in May, but I will continue. I hope everyone had a decent as possible week, and a happy Halloween!

Jason 10-31-09

I love you Mom.

Hello everyone!
Today is the 8yr anniversary of the passing of my mother. She died of lung cancer in 2001, 3 days after my sisters wedding. It was very sudden, for which I am grateful she did not suffer. I've decided through encouragement from my friend Tommy to share some memories of her today.

Both of my parents were born and raised in The Bronx, NY. They moved to Cincinnati in the 1970's, and my father lost most of his accent but my mother never did. Her voice was always so thick with a NY accent it was recognizable to anyone who heard it. She was a force of nature, a strong, proud woman.

I was her "baby" needless to say we were close. I have many memories of her playing Bingo- something she loved to do every Sunday. Sometimes she would let me go, and we would always go through the Wendy's drive-thru. She would always get a Jr Bacon Cheeseburger and a Diet Coke. She also enjoyed playing Mahjong with her friends at the house, as well as Bridge and Poker. She also enjoyed going to the riverboats and playing the 5 cent slot machines with her friends.

She also enjoyed talking!!!! Whether it be on the phone or in person, she could talk for hours. When I was in middle school, she went back to work. She started in Gift Wrapping for McAlpins a department store now Dillards. After a few years she moved up to working in the main cashier office. Sometimes she would have to make announcements over the PA and everyone always knew it was her because of her distinctive voice...something I miss hearing. My friends LOVED my mother, got a big kick out of her.

I know she is watching over me, and even though it's been eight years and I can think about her and smile and laugh...I still miss her dearly. Through memories she will live on forever.

Fredda Leitman Feb 8th 1942-Oct 24th 2001 R.I.P

This past week...

Hello everyone! Just wanted to touch base, as I haven't been on the network much the last few days. I am having a flare up that is kicking my butt (no pun intended hahah). Haven't been sleeping well, on top of increased nausea and pain. I go see my GI on Monday, but I hope to feel somewhat better by than. Wanted to thank everyone for all their contributions, kindness, and compassion. I hope everyone else is doing well, with their chins up! -Jason

Update:
Been asleep most of the day. Woke up again at around 8pm, and still feeling like crap. If I don't feel better will have to be admitted to the hospital. Will update with the network! I hope to not have to go...

I woke up this morning and I feel pretty good! The last few mornings have been MISERABLE, so what a wonderful change. I am going to take it easy, let my body recoup, but pretty sure the worst is over. I look forward to a nice weekend, and the upcoming week. Halloween is always my favorite time of the year.

On a side note - Tomorrow is my mothers 8 year anniversary since she passed. I can think about her and smile again, but she is greatly missed. Love you mom!

I'm back!

To everyone following my blog, first off THANK YOU! Second, I'm sorry I've been neglecting. I've been putting most of my focus into The Crohn's Disease Support Network (CDSN), and haven't had a chance to blog.

Things have been alright for the most part. Restarted Humira 2 weeks ago. Last week was great. On Sat Oct 3rd went to a TINY amusement park with my 5yr old nephew, my father and his girlfriend. Had a wonderful time, bonding with him and riding the rides.

Crohn's wise, the Humira has decreased my nausea and pain, but my appetite has become zilch. There are days where I will just plain forget to eat. Thanks to wonderful friends, I'll get a reminder..but some days I will never get hungry. It's my bodies defense mechanism. It knows ingesting food can cause symptoms to worsen. This is a big thing with Crohn's patients. Between nausea lack of appetiy e and malnourishment - I can blink and lose 2lbs. The doctor had me change from Ensure to Ensure PLUS to help maintain healthy weight. It is also CHALK FULL of nutrients I can't ingest any other way.

Thanks to everyone who is continuing to follow my journey with Crohn's, and supporting the CDSN! I am truly amazed and humbled that in just two weeks almost 100 members on CDSN. Keep spreading the word!

Hope everyone has a banging healthy weekend!

-Jason

For Dan and his Wife...

I am sorry to hear about your wife. I created an online Support Network at http://crohnsdiseasesupport.ning.com/ 8 days old and already over 58 people. It is for people living with Crohn's AND their FAMILY AND FRIENDS. There are some truly incredible people on there.

Doctor: I see the WONDERFUL Dr Maritza Palusiak. She has 2 offices one in downtown Cinci and one north JUST off 275 where it crosses with 71. The number is 513-794-5600

I appreciate you taking the time to read my blog, and spread awareness by educating yourself. I know first hand it is hard to see someone you love suffer. That is why http://www.CrohnsDiseaseSN.com is for people living with Crohn's, family and friends.

I wish your wife the best of luck. If either of you have any questions do not hesitate to ask...ANYTHING I have no shame when it comes to Crohn's Disease anymore.

I hope this helps.
Jason

UPDATE:
DAN CHECK THIS EVENT OUT http://www.CrohnsDiseaseSN.com/events/understanding-inflammatory I THINK IT WILL BE HELPFUL FOR YOUR WIFE AND YOURSELF :)

I'm Sorry!

I have TOTALLY neglected my blog!!!! I've been focusing on the Support/Social Network http://crohnsdiseasesupport.ning.com/ which is growing WONDERFULLY! I am extremely excited at how it is progressing.

ANYWAYS....Crohn's wise I've had a REALLY good week. The Humira is definitely kicking in again, and my symptoms have gone from intolerable to tolerable! I've actually been able to get out of the house to run errands, visit friends!..I even CLEANED MY HOUSE! Haven't felt good enough to do a proper clean in awhile. Had my weekly check up with my GI yesterday 10.1.09. She is very happy with everything, blood work looks good.

I am pretty worn out right now, been running around again today. I am going to be kind to my body and take a nap. Thank you to everyone who is supportive and helping spread awareness for Crohn's Disease AND http://crohnsdiseasesupport.ning.com/

-Jason