Taking control, of control. ;)


If you do some research on a size 10 trache (tracheostomy tube), you'll come to find that having a patient who has a size 10 is a very rare occurrence. Steve has a size 10 trache, and if you are new to our story, you may not understand just how many difficulties we've had with his stoma (the site in his neck where the tracheostomy sits).   

So to catch you up, I'll summarize quickly for you; when Steve first got his emergency tracheotomy, he was roughly 100 pounds.  He was quickly on his trip towards the 67 pound days.  Steve's diagnosis of gastroparesis came over a year after symptoms first started.  Much like his ALS diagnosis was 3 years after symptoms first started.  So this trache was a size 6, which is very standard for someone his size.

Well, instantly life as a trache patient brought infection (Pseudomonas and MRSA), and continued weight loss due to gastroparesis, and soon to follow was violent vomiting, constant aspiration and infections, and continued ALS progression.  It became very clear that until Steve was given alternate nutrition to support him (TPN -IV FOOD), he would die.  So Steve's been on TPN for a little over 3 years now.  It's saved his life, and has carried him far longer than any doctor/pharmacist ever hoped for. However, that type of nutrition while it did shoot him from 67 lbs to 150, only goes so far for truly nourishing your body. 

Skin integrity began to be a problem, to shorten our celebrations of the weight gain.  Trache stoma (along with every other stoma site, ie feeding tube) started to stretch.  Significantly so, where Steve jumped trache sizes to a 10.  Now the more a stoma site becomes compromised, the more any movement starts to add to the complication, to any wrong move during trache care or transfers; can be life or death at this point.  

So this started, me taking control over all that I could.  Because so much of what has happened to us has genuinely been out of our control.  Doctors marvel at the set of circumstances Steve has had to overcome.  It's one thing to take on a terminal illness that is relentlessly attacking your body, but then the added complications that collectively tear him down.  

So back to control.  No one is allowed to move Steve without me in the room became a loud and clear rule in the hospital, as I had to be there to assure the trache was okay.  If on the rare and extremely frustrating occasion I am not allowed in the procedure room (I'm calling you out intervention radiology) I put someone I trust on it. In fact the number of people even allowed to touch his trache I can count on one hand.  This need for control is one that I see as an okay time to take control of a situation.  However, it didn't stop there.  I discovered just how much I could control, and just how much better it made me feel about our situation.  That it wasn't long before I found myself trying to CONTROL EVERYTHING.

I mean everything, bless Steve's saintly heart, it's 10 o'clock, and I'm ready for bed.  He's not. Well, that's not very fun for him.  Because I then admittedly go into all the reasons why he shouldn't argue with me over this.  As innocent as this because YES I do deserve to have a large say on bed time because of how important consistent sleep is to me being able to survive the demands of full time caregiving; but this is just one of many ways in which I started to take what was once regaining my power, to then taking everyone else's.

The reason I can share this kind of really honest life with you, is because I've been digging deep into all the places I've gotten off balance, and really searched how I got there.  So I could understand how to regain balance.  Where I stand right now to keep that balance, I've had to pull away from some people I love very much.  Not because I love anyone less, but I can't be that great friend/sister/student/teacher/shoulder/etc, for anyone until I started to get balanced. So, if I can't be there for one on one chat's about my people's problems in their lives; maybe I can share openly about me working through mine here, and hope it helps them or anyone in some small way.  

I was giving so much of me out, in caring for Steve, and others, and the world; I sort of lost myself there.  I thought I had it together with my control trip I was on, that was fooling me into believing I had "everything under control."  Well, I was no where near "under control" and was off balanced in every space of my life.  Of course, I wouldn't be back to blogging again if I didn't feel a little more even, but it's not something that will happen in a month, or even a year. It's something I will work on daily.  While, I may not be able to be a good friend right now; I am a kick ass caregiver and finally giving myself that love.  I'll be back connected to others, before I know it. :) 

To those I've encountered in this process, who has been there through the many different phases of the ever evolving life Steve & I lead; I'm sure some of you are reading this proud of how much clarity I have, some may now understand why I (we) did something, and some may know I now understand why they did.  I'm so deeply grateful for the beautiful people traveling on this journey with us.  No matter which phase of it you've been on, you have played a huge role into helping us still be here living and loving today.  

So thank you, and know that while I may not be as vocal in some areas, It's not because I'm drowning anymore.  It's because I'm doing the work, ladies and gents.