Wednesday, December 11, 2013

Next chapter...

Surgery #8 is scheduled for Jan 29th.  Sounds far away but its actually only about 6 weeks and I'm already scared.  Scared and excited.

Finally gonna get these scars fixed.  As Dr. G says "Ames, we gotta put humpty dumpty back together again."

We were thrilled to learn that insurance was gonna cover the bulk of this surgery.  We'll have to pay a little out of pocket b/c insurance doesn't cover anything, but it's doable and won't require a house-sized loan to pay for it.  Also, even though my work requires that my medical care be done at Alexian Brothers in order for them to pay the max, we found out it won't be that much more to have it done at Loyola...which is amazing news, because that's where I lived for two months last year...that's where my doctors are...and the reconstructive surgeon there is amazing and familiar with nec fasc scarring and how to proceed with the complicated mess of a body I have.  Plus, Dr. G and Dr. Mosier will be able to come and see me, and it's even likely they'll scrub in and help, since they know exactly what's going on in there.

All in all, it's scary, but necessary, and I'm excited to get it over with.  I wasn't sure if it would be years before we'd be able to afford to pay for this complex surgery.... I'm so glad that we're doing it now so we can move on from this disaster.  The recovery is gonna be absolute hell and I'm sure I'll have a few BIG chapters to cover it all.

In the meantime, I'm still in PT...working really hard, getting stronger.  I run way more than I should, but come on.  They tell me I can run 2 miles, I'm gonna run 10.  I can't help it.  The pain is motivating.  I've been through that before.  Honestly, if you can get through an 8 hour skin graft surgery and recovery of 7 surgeries, you can run 10 miles.  My right leg doesn't help me much, but my left leg has trained itself to take the bulk of the work.

Leaving for the Nec Fasc celebration Cruise in 3 days... I cannot wait!!!

Friday, December 6, 2013

BIG #22- Caught Up.

It took me an entire year, but I finally did it....

I got caught up with my BIG.  It took a year to write it all down the way it needed to be written.  A year to learn what happened.... to remember process it.... to capture it the way it needed to be captured.  And now that I've caught you up to where I am now, in the present, it's almost time for the story to continue.

After the holidays, I'll be having my next round of surgeries.  The doctors haven't decided whether or not it will be one or two or three.... I'm hoping for one, but the recovery for one might be too much for me to handle, pain-wise and systems-wise.  I'm meeting with the reconstructive surgeon one more time to talk about what exactly these surgeries are going to entail and decide how we want to proceed with it.  With my anemia and extremely low platelets, they want to minimize the number of times I'll have to go under anesthesia, but they also don't want to do more than my body can handle.  Pray that we make the right decision about this.  I'm scared for the pain.... I remember exactly how the skin grafts and closing of the wounds felt during surgery #6.  It was pure hell on earth, and I know this one is going to be similar.  However, I lived through that and  I know I'll get through this too.  And at least with this surgery, I'm excited for the outcome--- reconstructing and fixing the scarring so that it doesn't look like a shark attacked me and ate half my body.  I will always wear scars-- lots of scars.... but this will improve things big-time.

It's what I need to be able to finally say I'M BETTER.  It will help me be able to move on and live again... to not scowl every time I look in the mirror.

There are other health issues related to nec fasc that are in the back of our minds and that may or may not be a problem in the future.  We're hoping and praying that necrotizing fasciitis won't rear it's ugly head in those areas of my health.  For right now, we're living in the moment, day by day, and fixing the wounds in the next step.

My leg is getting better daily.  I'm walking better, limp-running faster, and my endurance is improving.  I still have bad days-- today, for example, my knee was stiff and sore for no reason and didn't want to bend at all.... I ran on it and it made it even worse.  That's frustrating as hell.

I also need your prayers because of another issue I'm having with my bad leg.... I don't want to go into details until I know more and get an MRI, but please pray that it is nothing.

The next chapter of BIG will involve this next surgery.  Glad to have you prayer warriors on my side to  help pray for success with the scars and control of the pain.

I'm hoping that chapter of BIG will be the last.  I hope that necrotizing fasciitis stops there and a new chapter of life as a healthy wife, working, marathon running, starting a family takes over this blog.  Thanks for tagging along and helping me get through this BIG.

Until the next chapter....

Happy Christmas!  My Uncle Rick and Uncle Nick are taking me on a cruise to celebrate my survival.  When I was on my deathbed last year, they told me that I was gonna survive, and when i did, they were gonna take me on a cruise to celebrate me living through an illness that should have killed me.  We're leaving in a week on the Celebrity Silouhette and sailing to Jamaica, Haiti, Grand Cayman, and Cozumel for 7 days and I CANNOT WAIT!!!  I am blown away by their love and generosity.  I have the best family in the entire world...seriously...the BEST!