11?  Anyone want to guess the significance of that number?

Uhm, well, I'll give you a hint, it has to do with the topic I discussed last week and decided to "spare" you all the details!

Yeah, 11 bowel movements.  Sorry to be graphic, as I know it is for some.  That was my total today, well, thus far.  The day isn't quite over.  Granted, I'm physically exhausted, mentally exhausted, was munching all day to stay awake and probably ate a few higher fiber foods and whatnots that didn't *help* the matter, but 11 was the count.

You might all wonder why I am counting anyway?  Sounds kind of gross to some.  Well, it's part of the study.  I'm required to keep a daily journal.  It's quite simple though.  I right down 3 numbers.  Number of soft/loose bowel movements, a number for my pain for the day, and a number for my general well being for the day.  I'd have to say today has been the worst out of the 11 or so days I've been journaling.  But, I had a LONG week last week, and I know I'm just tired from it all.  When I get worn down, my body just can't keep up the fight and I pay for it this way. 

So, you are all probably wondering about yesterday by now?  Probably sick of hearing about my bowel movements by now too!   Oh well, it's my reality, yet again!

Well, we got there around 12:20pm yesterday.  And, much to my surprise, I was not 100% qualified for the study yet.  They had to do yet another physical, by my new GI (which I absolutely love tho!), take my weight (lost 2.5 lbs - that boosted my self-esteem JUST a little!), blood pressure (130/84 - it's been so high since on steroids), temperature, asked me a few more questions, clarified my medical history yet again, went over my journals, had me feel out a 10 page survey (which is part of every infusion from now on - more on this later), and get blood.

Oh, did I mention, get blood?  Sheesh!  I have the pickiest veins.  Good veins, but I'm anemic and you can imagine with this disease, easily dehydrated.  Add to it that we had been out of town for a week and my normal munching on ice and water throughout the day went out the window.  3 sticks, 1 blown vein, and an IV later, they get enough blood.  And, sure enough, my hematocrit was 37 (should be somewhere between 38 & 46), making me anemic.  No surprise.  And, after that and about an hour, I qualified.  It took about 45 minutes to mix the drug.  We're still completely in the dark as to whether it was the placebo, or one of 3 doses of the drug.  We'll find out around 12 weeks I guess, or if I feel better.  I certainly don't expect instant relief from it.  To recap, when I started Remicade, it took 6 weeks for me to feel solid relief, and then thereafter it took about 48 hours after each infusion to get relief.  So, if I see relief, I think it'll be after the 2nd infusion and I don't expect it immediately, though I'm hopeful I got the drug.  Instinct just tells me so, I guess.

Anyway, about the 10 page survey.  Wow.  It was easy stuff, but I never realized HOW sick I was.  It asked all kinds of questions.  One of "How many hours of work have you missed because of your disease in the last 2 weeks?"  I hadn't missed any, in fact, I haven't missed any work since being back on Sept 2, with the exception of doctor's appointments.  But, the next question was, how how your qualify of work been?  And, 1 being not affecting it all and 10 being not being able to work.  I wrote an 8.  Seriously, between needing pain meds almost daily to even FOCUS and stay out of the bathroom, having to fight through the meltdowns taht the steroids seem to be giving me at times, it has really affected me MUCH more then I though.  On top of that, when I rechecked everything, I was surprised out how my general mental health about it has been.  I keep a fairly positive spin on it, thanks to an awesome family and friend support network.  I try not to sweat the small stuff too much, though it does bog me down at times.  But, I just didn't really focus on me... I really am very sick and not noticing it.  I just push through the day.  I get up around 6:30 every morning or earlier.  Get Addy ready, well, Charley dresses her most mornings, I get everything laid out the night before, get to work by 7:30, do the normal work day, leave work at 4pm, either go home or run to the grocery or pharmacy, get home, fix Addy and me supper and Charley too if he's home by then, get her a bath, get my emails and such checked, get her a bath (Charley does about 1/2 of them), get settled and things ready for the morning and then just crash on the couch between loads of laundry and dishes and normal household stuff.  I've let a lot of stuff go to the wayside because I just don't feel well.  It asked on a scale of 100 how I felt...0 being the sickest and 100 being the best.  I put a 35.  That was being honest.   0 would of been July.  And, I've come up to a 35 since, but seem to not feel much better then a 50 the majority of the time.   I guess the survey just made me stop and go "wow!"

But, the ultimate goal?  Feel better.  I can push through this daily stuff.  It's hard, but I've been doing it since July.  I attribute a lot of that to little Miss Addy.  Those morning kisses and smiles get me going.  That cuddling time we have at night as she falls asleep...and those nights were Daddy finds us crashed on the couch together.  It makes it okay.  Makes me keep going.  Kids are just amazing.  They really know when something isn't right.  And, though she's started having what we call "meltdowns" (Seriously, I need to video this and show you...all I can do is LAUGH when she has a "meltdown."), she still can brighten my worst of moments.  An amazing little gift from God....So glad I have her to wake up to in the mornings!  Of course, Charley is there too!  And, my mom has been nothing short of amazing!  She has helped with Addy when I physically couldn't.  She has just made me feel better about me and knows when I've had enough.  She can see right through me when I'm sick.  I sometimes think she counts my trips to the bathroom better then I do!  What are moms for?  I'm slowly learning how wonderful they are...and I tell ya... if you haven't today... tell your mom that you love them!  My has downright been my backbone through my last 3 or so years of inferility, Crohn's, and helping me survive losing Reagan.  Amazing woman!  Yes she is!

Okay, this post was a BIT all over the place.  Sorry!  I took 2 pain pills after bowel movement #11 and Addy is playing and we're getting ready to settle in for bed.  I'm looking forward to resting with her.

Will keep you all updated, but here's a teaser from the pumpkin patch we went to on Sunday.  We had SO much fun!