After 3.5 years of remission - it took 7 days for a full blown flare.  Seven Days.

I am not going to go into what a full blown flare looks like again.  If you are having trouble remembering or you are new to HWHAP - you can read: The Sh*t that is Crohn's Disease here! I don't mince words in that post.

Last Monday, the 12th was her Remicade appointment date but we found out the Friday beforehand that there was a lapse in her coverage and we were having trouble getting answers.  There were words like:  pre-existing condition, pre-authorization and you need to call financial services but ultimately they canceled her appointment and would not allow us to cash pay.  I was frustrated but not OVERLY concerned. #Mistake

I honestly had no idea she would get this sick so fast.  After 3.5 years you forget. You forget how completely awful it is.  It is so awful! I was even brazen enough to allow myself to believe that she would be ok.  Maybe she doesn't even need Remicade anymore!  Maybe, just maybe she can stay in remission without it!  Her doctor has told me countless times that they do NOT take children off of biologics - it just does not happen.  Why would I allow myself to think Sophie would be the exception? I don't know why.  I just know that it is hard, hard to know that your child will need this for the REST OF HER LIFE. It hit pretty hard. Again.  Which seems ridiculous but this disease is ridiculous so I think it is only fair that my emotions can be ridiculous too!

I left Sophie for a few minutes this morning to run to the gift shop and cafeteria.  While in the gift shop my emotions got the better of me and tears started flowing. Being here is hard. Coming through the ER was so hard.  We were in the same room that we had when Nate was diagnosed.  Being back on the GI floor brought back so many feelings.  Just ALL OF IT is hard.  Another mom came up to me and asked if she could hug me.  Not is a creepy, stalker way! She had tears too.  The mom bond is strong.  Being the mom of a chronically ill child somehow, if possible, makes the bond even stronger.   I didn't even get her name, or her story, but I could see the sadness in her eyes too. We are same same.

And now here we site in her comfy suite at Children's Medical Center Dallas overlooking downtown, an IV in her arm -- she is receiving the Remicade that was previously denied and we are hoping this kick starts her little body right back into remission.  She wants to go home and although her doctors wanted to observe her for one more night, they are granting her wish and letting her go home tonight! As long as everything goes well, of course.  She will miss school for the rest of the week as she rests and allows her body to recover.

2.5 years of hell was forgotten in the 3.5 years of remission but it only took 7 days to bring it all back and now I am hoping 7 days to get her back into the remission bubble.  It may take mommy a little longer to forget and will certainly take a while for the guilt to go away.   This sweet girl pays the price when things go wrong, when balls are dropped, and denials are made.  It hurts every fiber of my being to see her suffer.




This girl though is fierce, she is a fighter, a warrior and she will warrior on.
I am so honored to be this warrior's mom.  #SuperSweetSophie #CrohnsFighter #WarriorOnLittleOne

Thank you all for your calls, texts, and messages!  Thank you also for always allowing me to come here when times are tough.  When things are good I easily forget what comfort I find here, it is nice to always be able to come back when it is needed.

I've always been pretty transparent on my blog, Facebook and Twitter.  I'm honest and open to a fault sometimes.  Today is no different.  I feel like I need to share this and I am hoping by sharing I can begin feeling better.

I've been pretty sad lately.  The tears are always just a blink away.  Some days are better that others but I have been pretty down.  I simply think about Nate or Sophie's diseases and become overwhelmed.  I don't really know of a better way to describe my feelings - - - just overwhelmed.  Often mad but mostly sad and overwhelmed.


Just as I had to work my way through Nate's diagnosis I am now having to do the same with Sophie's illness. I feel like I had finally clawed my way out of the dark hole that I had been thrown into and for some reason I am slipping back down every time I think about my sweet girl.

I feel like I am on the edge.  I've been here for a while now and it seems like every time I take a step back away from the edge.  Something or someone pushes me back to the scary edge.


There are other things going on right now too that are just making things seem like the cards are stacked against me . . . 


Family stuff that totally took me off-guard and really hurt my feelings.
A devastating diagnosis of someone I love so much my entire body hurts just thinking about what is to come.
Always the worry of all medical expenses.
The Perfect (diabetes) Storm that hit last week didn't really help. (I'll blog about soon)
Not being able to make Sophie feel better is killing me.  
You think Type 1 is a misunderstood disease - - - Crohn's and Colitis are not even on the radar!  Grrr!!


The other day when I was talking it over with my mom I did say - "Why me?"

--- I do SOMETIMES wonder why this is happening to me?  And when is it going to stop? And why would someone say something like that about me? And what have I done to deserve this? And really maybe I do feel a little sorry for myself?

Why not me? Right? 

So, after I was done with my pity party for one --- my mom and I decided that I needed to recognize 1 good, happy, positive, exciting, or rewarding thing each and every day. Nothing profound or life changing just baby steps to help me get through this funk one day at a time.

We started on Friday, April 8th and I've had to phone her or text her with 1 good thing each day ---
 Here is my little list so far:


5.  (4/12/11) I spent time with my dad (Bobby not Jerry - yes, I know it can get confusing since I call them both dad) and my Uncle David today on the East Side of Ft.Worth.  It brought back such wonderful memories of my childhood.  I even drove by my grandparents house (they've both been gone for close to 20 years) and felt like I was driving back in time.  Nostalgic.

4.  (4/11/11) My mom bought 2 Freestyle meters for the price of one at CVS (on sale and with a coupon).  Silly but this made me happy because we were down to only our PDM for bg checks.  I gave away a meter to someone in need and then our other one crapped out.  Maybe this is really 2 good things for today! Exciting.

3.  (4/10/11) My kids made me mud pies. Awesome kids.
 
2.  (4/9/11) We had a wonderful day at the zoo and no low bgs for Nate. Fun and Happy.

1. (4/8/11) I witnessed a terrible hit and run accident while taking the girls to school Friday AM.  Literally 1 or 2 seconds later and it would have been my truck that was hit right where Emma sits.  The driver of the car that was hit was ok and luckily, he had just dropped his son off at school.  I later found out from the insurance company (they called me for a witness statement) that another witness was able to get the license plate number of the runner.  Thankful.

So, I am hoping to continue my 1 list here on my blog.  So far, just talking or texting back and forth with my mom about my 1 thing has made me happy so I feel like it is a step in the right direction. I know I am stronger than this so it won't last but right now . . . well, right now it's tough.