Friday, January 9, 2015

A stinky new normal

I was not going to say anything about this initially.  Only a few people are currently in the know.  Then I realized who am I kidding...I am a venter.  I need to talk things out and just get it out of my system or say it out loud.  This does not always thrill my family.

I remember coming home from school or work when I lived at home and I would rant and rave about whatever was bothering me for at least 15 minutes and then I was fine, over it and could go on about my day.  I still do this... although I turn to writing more than speaking.  So bear with me while I rant.

I remember the phone call from the first specialist when they said that they though D had Crohn's.... I had just gotten to the grocery store and was getting out of the car when the phone rang.  The doctor said, "it looks like the early stages of Crohn's disease."  The news crushed me and I slid to the ground where I just sat until a friend happened along and helped me up {Thanks Jessica!}  Then I had to get up and pretend like that phone call hadn't just happened because I had kids to pick up and an afternoon to get through before my husband would be home.  Being upset would have to wait.

Of course I cried later.... I cried because I knew all the horrible things this meant.  I knew because I watched Crohn's kill my mom bit by bit.  I have another family member with it & I have watched it re-arrange and scramble their life.  I knew the hard road that was ahead... and for an 8yr old to have to travel it just seemed beyond cruel.
But maybe,  just maybe this doctor was wrong.... so we found another doctor who within 15 minutes of talking to us and examining D said, yep Crohn's.  He wanted to do another colonoscopy to verify.
When discussing the results of the colonoscopy with us I cried again... there was no pretending that there was another possibility anymore.     To have to explain to Dylan why he was sick and what his future involved was so hard.  It is heartbreaking to take him to have his blood drawn constantly, to hold him down while they start his IV each month, to explain that yes he has to take all this medicine and while it makes him temporarily feel better he is not better yet... nor will he ever really be all the way better. Dealing with this disease is his life now.   Crohn's never goes away & you deal with it daily.

Fast forward 5 months.  I wake up one morning in extreme pain and drive myself to the ER.  I suspected a kidney stone or wonky appendix and my 4am web md search seemed to support this.
A cat scan, massive amounts of blood work, X-rays, colonoscopy and 6 days later I had a diagnosis as well.  Crohn's.

When they first told me in the hospital that it was a possibility I laughed out loud because the possibility of it seems so absurd to me.  It was my worst nightmare coming true again.
I said, "No I have an appendicitis and you are going to take that out and I will go home."  Then they laughed.

So once again life has changed greatly..... today I started IV infusion treatment.  Soon D and I will go together to get it done.   My sister said "Wow you are taking helicopter parenting to a whole new level" when I told her of my diagnosis.  That was still is.   We are on heavy duty meds.  I pray that this works for us.... that it gets us into remission with little to no scary side effects.

The new normal is hard for me to accept.  It seems like so much to take on and yet here we are and making the best of it.  I run the gambit of emotions.... angry, sad, resolved, determined and  more.
I realize that medicine has advanced a great deal since the days of my mothers diagnosis.... I know that no 2 cases of Crohn's are alike which is both a blessing and curse.  I know that we will get through this and be okay.  I know that there are people going through things that are far worse.
I also know that I would really really love to have rocky road ice cream again but I can't.  So thank you for listening to me vent, for all the prayers that have been said and help given to our family.  We are truly grateful for it all.

No comments:

Post a Comment

Thank you for stopping by & leaving a comment! I love it!