Your input is very helpful and VERY welcomed. My husband and family support my decision 100% and they are all concerned about
me and my feelings and my wellbeing. I would love to be able to stay up and do things whille my son napped, but I can't. We just got up from one and had a late lunch...I would rather have stayed up and done laundry and started some super yummy meal for dinner instead. I used to make huge meals with a main dish and sides...but now we're lucky to get more than one item on the plate. : ) Tonight it's turkey burgers...I have mine without the bread loaded with mayo and ketshup. : ) Then if my husband wants something more he's on his own. I also had to sit on my utility stool to do dishes the other day. I haven't had to do that since I was pregnant.
I really do not mind the idea of a permanent ileo...anything is better than the way things are now. I've done fairly well hiding this disease from the social workers and others that I work with. However, I am completely including one of my very good friends and she's going to take part in caretaking afterward. But I'm not going to broadcast the surgery or the ileo. : ) I am going to write my boss and supervisors this evening to let them know what's going on. I have three weeks vacation and one week of sick leave for the year 2009, so hopefully I can start seeing clients in week 5. My job really isn't very demanding (for the most part) and I can have someone transport me to their homes and all I do is sit and help problem-solve, educate, model parenting skills, etc.
It also sounds like Jackie, you aren't having a very good go either. I'm not waiting for additional Remicade infusions before the surgery. I'll have my 5th one tomorrow morning, and hopefully maybe just one more before the surgery. My nurse reminded me yesterday that we are out of options medicine-wise, and she is very pleased we're going this route. However, she said she was sad b/c we will no longer be their patients. I adore my GI and his nurse (wife). They take such wonderful care of me and my family. I try to do little things of appreciation, so tomorrow I'm bringing them a homemade butter cake. Yum!!! I may enduldge in that this evening too, knowing I'm getting a treatment tomorrow. : )
Anyway, I do have my moments of cold feet, but all I really have to do is look in the mirror as a reminder of why to do this...and I also just need to take one glance at my son, as I know I'm not 100% for him, and he deserves all of me. I also want to be the best for myself. I'm ready to kick bootie with my career and the furthering of my education, and it really is a struggle right now. But Shhhh...I try not to let on just how overwhelming and exhausting my life is. : ) My family sometimes picks up, but for the most part I minimize and play it off decently.
Thanks again for everything you've shared...I look forward to continued chatting...just hearing your stories seems to brighten my day!
: ) Robin
Dx-May 2007 Asacol-2400mg bid Prednisone-20mg Remicade-4 Tx
Paxil-40mg Prilosec-bid Multivitamin Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet! I appreciate the small things in life...the little joys that occur every second of every day. Though we struggle and have crazy complications, nothing can over ride our love and happiness.