Updates.

 

We are never ever getting back together. 

I have one thing to say to the infection I overcame this summer…we are never, ever, ever, ever getting back together.  The summer of 2017 was filled with many highs and lows.  However, the setbacks on my health were devastating, and I am still feeling its many affects on my body.  Last year, before my sister Caitlin’s wedding, I got a pretty serious bout of cellulitis around my feeding tube.  I ended up having to be treated by an infectious disease doctor with heavy oral antibiotics and two rounds of IV antibiotics.  The infection was extremely painful, and it made it so hard to survive this most joyous and busy season–wedding season.

Almost a year to the day, the infection in my feeding tube returned.  Early signs of infection started appearing early June of this year.  It almost seemed like a nightmare.  As the summer progressed, the infection increasingly became more and more painful, and I got sicker and sicker.  I have undergone a lot of procedures and surgeries in my life, and this was by far the most painful thing I have ever lived through.  I started out being treated with oral antibiotics, but this was not doing anything for the infection. So, I started on IV antibiotics.  I didn’t quite know what I was in for, but I was in for a ride of nausea and exhaustion.  I traveled to St. Joseph’s every day with my momma and sat in the infusion suite while I got my antibiotics daily and then IV fluids every other day.  That was basically July.  It seemed like the antibiotics did their job at the time.  After I finished this first round of antibiotic therapy, I got my feeding tube changed out.  Soon after, the pain and signs of infection returned.  It was mutually decided between my GI doctor, pacemaker surgeon, and my infectious disease doctor that it was time to remove my feeding tube and place a port-a-cath.  After five years and five days, I pulled my feeding tube out.  This same tube that once had sustained me and given me every ounce of nutrients and calories for an entire year, the same tube that had given me two liters of pedialyte and medication for over five years, and the same tube that had “saved” my life was just gone.  Woah.  It was strange.  But it was also the same tube that was causing me so much pain and so much infection–that was making me sick.   So, a very, very bittersweet moment.  The very same day,  I got a port placed at Northside Cherokee.  We named the port Gus.  It was really difficult coming to the decision of getting the port.  There is a big risk of infection, as well, when it comes to port-a-caths.  However, after  being stuck almost every single day for IV antibiotics, now unable to use the feeding tube anymore for supplemental fluids and medication, the port was my best option.

After I had Gus placed on August 11th, I continued on with IV antibiotics until mid September.  I can now say that I am 100% infection free.  I am so thankful to no longer have the pain and the infection.  My body has been through a lot this summer–this type of “trauma” for someone with dysautonomia causes major setbacks, so I am taking things one day at a time.  Well, to be more honest, I’m really taking things one minute at a time.  I am getting my breath back.  Learning how to walk again, so to speak.

I want to be real for a minute.  I can’t be sunshine and rainbows right now.  My summer really, really hurt.  I couldn’t handle being on any social media at all.  I was sick all of the time.  I could barely eat anything without being ill.   I was exhausted and in pain all of the time.  I felt more discouraged and depressed than ever.  I felt alone and unworthy.  I didn’t feel like fighting another battle–I really didn’t want to do it this time.  I gained a lot weight.  My stomach got so swollen after my surgery in February to have my pacemaker battery changed that it looked like I was pregnant.  I still do a little bit.  (Thank you high rise yoga pants!).  I lived on pain and nausea medicine for a few weeks and felt like a weak little child.

It almost destroyed me.

But it didn’t.  I’m here.  And the story isn’t finished.

I want the real stuff to always be on here.  Because the real stuff is validating.  It makes you feel like you aren’t the only one feeling this way.   You don’t really see the real stuff on your Instagram feed or Facebook feed.  But the real stuff makes up our every day.  It’s not just the highlight reel.

Every day momma and I had to go to that infusion suite, I saw a lot of pain.  I saw a lot of suffering.  I saw a lot of real stuff.  I’m not special or unique.  I’m simply just writing my story down.  I want people to come here to be encouraged, to feel validated, and to feel closer to God through my story–or really through His story.  I want you to read my story and say–“I went through that too.  I felt that pain, too!”  When we–as the church– are real, authentic, genuine, and honest, it opens the gates to healing. There are no boundaries because we can throw out all fear and embarrassment.  If we can share in our greatest disappointments, our realest moments, and our darkest moments of pain–then we can also share in our best and brightest victories!

I hope you know that that’s what I want to do here.  Share it all.  The highs and the lows.  The real stuff.  Good and bad.  Ugly and pretty.  Because God is in all of it!

So, what is happening in my life now?

Well, I’m still using my little friend Gus. My port.  It took a bit to adjust to having a port, but I think I have the hang of it.  Right now, I am waiting to see a specialist in Toledo, OH for dysautonomia.  I have been on the waiting list for two years so this is huge–I see him December 1st.

In the meantime, I start some online college classes with Regent University online very soon.  I will be studying writing…so I am really excited.

I’m in a season of recovery.  Day by day.  Minute by minute. Second by second.   I am breathing in what God has for me in this season of restoration and hoping through each triumph and trial, I will lean in closer to Him.

 

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