I'm a Tired Mommy...

Summer and Robin-

Thanks for these posts. I related to so much of what you all were saying. I have a 14 yr old who has known me before I was sick and 5 yr. old who has not. Madisyn has only known me "sick" and that bothers me soooo much. I can't do so many things because of being sick- simple things like going to the park.

You are still young and if you want to have more children, I am telling you --- it makes a big different when you are older and sick. I was almost 40 when I had my second and with UC and age, I have had a rough time (it was undiagnosed at the time). I also work full time as a reading specialist and high school teacher and that part of my life is very important too.

Right now I am waiting for the 6mp to kick in--- it has been 2 months since I have been taking it. This is the last resort. Plus, I am still taking pred.... I am very overweight and just plain tired.

So, thanks for having this conversation. I know it made me feel better about the decision I need to make very soon- surgery. Barring the miracle of 6mp, I will have it as soon as this summer.

I wish you the best ===== keep us informed.

You know...I was just thinking...I can't go off prednisone! Heck no!!! I'm at 20mg and not feeling well at all...granted my next Remicade infusion is tomorrow, but that's only 4 weeks after my last one and I only feel good for a few days post treatment. Hmmm. Yeah...I'm not willing to decrease my dose any more until I'm cured. : ) That is such a nice thought...being cured. I've only had this disease for two years but I feel that's two years too long.

Anyway...I am so looking forward to being off the prednisone...Remicade...Asacol...Prilosec...wow...my 20 some pills a day is greatly going to be decreased!!! I currently am close to 190lbs and my norm is 160...yuck. My super skinny weight is 145-150...so, my goal will definitely be something like that once this is all said and done. I've gotten my husband basically a new wardrobe this winter, and I keep telling him that my time is coming and he's going to be burning the plastic on his credit cards once I'm thin again. : )

Well...these were just my added thoughts.

: ) Robin

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

Melissa...

You know...I've never been apart of online support group before. I suggest them all the time to others for empty nest, mother's of children with autism, single fathers, etc. However, never did I think I would be involved with or need involvement with a group of my own. My Daddio actually gave me this site. He's done a lot of research and was eager to share his knowledge. : ) I am so glad he did. I look forward to reading everyone's posts throughout the day, and I feel you ladies have become a very big part of what gets me through the day. Such a weight has been lifted since reading and sharing stories. I feel 'okay'...you know? I'm going to be okay. You're going to be okay...our children and our families are going to be 'okay'!!! : ) I think it it is such a wonderful feeling.

It seems like you're battling a nice little flare yourself, and I know that your breastfeeding issues are really weighing on your happiness. I do hope you're able to find a medium...I've been keeping up with your posts on the other board. I do think that Remicade could be a positive option for you...but really this condition is nothing I feel I want to live with forever, and we reached the immuno-suppressant level pretty quickly. I'm also tired of having open wounds from staph infections. So, once you've gotten additional side effects and no remission, surgery may be looking pretty good to you too! : )

But really, I do hope you find something that's good for you and the baby. I did breastfeed for only 4 months, and I'm okay with that. He's a very healthy and happy little boy...I know that taking care of me is important, which is why we are going forward with the surgery sooner than later. Then after hearing form summerstorm I am seriously considering a long-term ileo. Gosh...can you imagine having energy?! Being motivated to do something?! Woo-hoo!!! Jackson is going to be up and running soon, and I want to be chasing him!

I do hope you all have had a wonderful weekend. Again, I just love hearing from you and learning what's going on in your lives. I have yet to get to the laundry, but it must be done and we are all running low and clothes that look good. : ) It's always pretty obvious when laundry has been slacked on when we're wearing our not-so-pretty outfits. : ) At least that's what I think.

: ) Robin

Robin you sound so much more positive lately!  And I am so glad you got your dishes done..haha.  It took me almost 2 hours(with interruptions) to clean out my kitchen yesterday and boy doesn't it feel good?  Only problem is it never STAYS clean..grrrr.  Anyway, just glad that you are feeling so positive about your decision for surgery and are looking forward to all of that time with Jackson disease free.  I can only imagine that feeling as I'm not at a point where surgery is an option.  The medicine is still "working" for me, though I beg to differ when I am in a flare.     Those are evil and it isn't like the flare goes back into remission in a day or a week.  Anyway, do keep us posted on your progress and hang in there when you are overwhelmed by housework(get a cleaner yet??) or depressed about not buying new clothes because you don't want to support your current weight(I hear you on that one, though I am getting the pounds off as we speak!).  So glad you found our UC happy place!  Way to go dad's for reasearching.  We will always be their little girls won't we?