Living in a Constant State of Being "Not Out of the Woods Yet"

I haven't written about Crohn's in a while because part of the battle of dealing with a chronic illness is that it can kind of be depressing and people sometimes don't understand that you may need to talk about it and it's not because you're trying to complain or get sympathy. It's hard and some days are REALLY hard and after a few weeks of only days that are hard and really hard, it's time to talk about it. Like it or not, that's where I am at tonight.

A few months ago my gastroenterologist decided that labs were coming back great and I hadn't been admitted to the hospital in a while but my Crohn's was still showing no signs of going into remission. We had my Remicade infusions on an every 8 week schedule but I was still going into a full flare by week 6 until about a week after each infusion (essentially still spending almost half of my time in full flare mode). The only thing that keeps me out of the hospital at this point is that I rarely heal from one fistula to the next so my tissue has no time to repair before it's ripped apart again and due to that lack of strength and healing time, that breakdown is doing part of the job my surgeon would be doing if I went in. My gastroenterologist thought we should get a little more aggressive with the Remicade and change me to an every 6 week schedule.

In September I had my first infusion at the 6 week mark and wouldn't you know it, I was doing great and then flared at the 4 week mark (again, like before, 2 weeks before my infusion). I was shocked but thought maybe my body was just off and after my next Remicade, I'd start to feel better again. I had my 2nd infusion on the new 6 week rotation 4 weeks ago now but I never got any relief. I've essentially been in between hard and really hard days for 6 straight weeks now with the last 2.5 being nothing short of torturous on my body. The last 3 days have had me praying like a mad woman and the husband and I going back and forth on whether it was time to make the long drive to the hospital. On Sunday night I looked at him and said, I think I'm down for the count. He asked if that meant I was ready to go and I asked for 2 more days. He said, I just wish there was something I could do for you and I thought about it (wishing there was something too) for a minute and responded, you could come pray with me. My husband looks hard at me, immediately turns off the tv, and comes and sits down on the couch where I'm laying, grabs my hands, and starts to pray, hard! Yes, I'm seriously blessed by him and will never forget that I am married to a very special man!!! I don't know the reason for my struggles but I never doubt God has a plan for them.

Since Sunday night, I have been "down for the count" with a few moments of short lived attempts to throw in a load of laundry or make food and read about a hundred random texts from my husband while he's at work making sure that I'm "relaxing" or  "resting" (both in quotations because they are nearly impossible when you are in pain). The pain has been increasing at a steady rate with tonight bringing me to a point where I almost asked my husband to come home. I decided to play doctor on myself (I'll spare you all the details) and have finally got some of the pressure of one of the abscessing fistulas to release but I'm definitely 'not out if the woods yet." With that being said, I'm sort of laying/sitting on a heating pad right now so the heat can draw more of these nasty "toxins" out of my body so the swelling can go down, I can get some healing going on in this "broken" body, get some strength back, get my booty out of bed, and get back to life as I know it.

Any extra prayers you can send up would be amazing and much appreciated and I'll leave you with a few quotes, which have seem to become my norm here :)

Never forget what you are going though always has something for you to learn.

Let your struggle make you stronger

and share what you've learned!!!

Until Next Time...

When You Know It's Time to Speak Up

"If you think your little blog is going to help someone, then good for you."

Those are the words (in a sarcastic voice) that put a halt to my blog last fall.  They came from someone that I care about and also someone that I didn't think was even aware that I had a blog.  That one comment also brought a few things to my realization: one, that I was indeed being talked about behind my back (if my blogging was brought up); two, I had let myself care too much what another thought of me; and three, I needed to take some time to find my voice and direction again so that no one else's words would again be able to attach itself my soul.

Over this past year I have done a lot of de-cluttering in my life of anything that could bring me down or take away from my purposes in life.  I still have work to be done, I always will... it's part of being human (we're flawed).  Recently, I removed Facebook from my phone and iPad along with un-friending and un-following a few people.  I absolutely love seeing what my friends and family are up to, especially since I am still living three hours away, but I needed to get away from making checking it a thing I was doing out of habit (over and over again), getting my phone out of my hands, getting away from negativity, and feeling like I was giving more of my personal information away every time I was asked to update the app.  It's sad that we (I) use social media as a way to keep others "close" but especially for me, I cant stand to talk just to talk.  I know that may sound strange from someone with a blog but let me explain myself... When people talk to talk, it annoys me on a few levels: first, you can only talk so much before you start talking about others and eventually start gossiping; second, repetition, it's not fun to talk to someone when all you ever do is talk to the same person about the same thing over and over again; and third, I am more drawn to the story of something.  Don't just tell me that you work out every day, what you did today, what you got, what you want, that you are annoyed by this or that, that you hate life, that someone doesn't have to deal with what you have to, or your excuses; tell me why, what it does to you or how it makes you feel, how it makes you grow, how you want to overcome it or how it gives you hope or drives you.  I am interested in your story, your growth, your real struggle, your hopes, your goal, your purpose because those are the things that mean we are loving, growing, being compassionate, not comparing/judging, and LIVING!

In this journey of re-grounding myself to my purpose I recently came across this book Speak by Nish Weiseth. The front cover says it all, how your story can change the world.  I am SO excited to read it.  After only reading the Forward and Introduction, I knew I was finally ready to return to blogging.

Join me in this journey!  Let your story be heard!  Whether it be good or struggle, we can all grow, learn, change, find strength, and bond through each other's experiences.  Introduce yourself to me and tell me your story!!!

My Favorite Quote

Until Next Time...