“...waiting around for our circumstances to deliver our expected life is a waste of energy.” Introduction to of Mess and Moxie by Jen Hatmaker.
I’ve been thinking this and saying things like it over this past year. Relapsing last year was a breaking of my heart.
I LOVED:
-not being on medications
-feeling the best I’ve felt in 6 years
-having hope for my future.
The relapse took a lot out of me and my family. We (and many others) had sacrificed so much for my chance at remission. The hardest part in it all, is I had remission! I tasted it, felt it, experienced health and life again. For those of you who have your health, please, don’t take it for granted. I wish and hope for health again but I think I will likely have this muted version of it.
Reality:
Every 3-4 days I have the task of administering my medication. This process takes about 3 hours from start to finish. First, I have to clean my stomach with alcohol wipes. Second, I apply a lidocaine numbing cream to help with the pain from the needles I’ll be inserting. The cream takes about an hour to be absorbed into the skin. Usually during this hour, I’m finishing gathering my supplies I’ll need or prepping snacks and drinks for the kids so I don’t have to move too much later. Once my hour of waiting is up, I setup my work space. I like to set up everything at my kitchen table as it lets me have a large flat surface to accommodate all of the things I’ll need.
First on my to do list, take Tylenol. You see, my body hates this medicine. If you’ll go back in time with me for a moment, you may recall a medicine I used to take called IVIG. This stuff wrecked me for a week every time I took it. Flu like symptoms, aseptic meningitis, no matter what pre-meds or post meds I took, the vomiting still happened, the fever still happened, the blocked bowels still happened. It was a living hell, every 3 weeks. Now, I’m taking a medicine called SCIG (subcutaneous immune globulin).
Ok, so back to my setup. I lay out my drape cloth and begin to unpack my ziplock (that I prepared when my monthly shipment came in) of supplies: 2-60 ml syringes, 2-50 ml bottles of Hizentra (SCIG), 1 rate tubing, 1 infuse set with 6 needles, 1 red syringe cap, 2 transfer pins, several gauze pads, paper tape and 6 transparent infusion dressings.
First, gloves on, then I have to prepare the line with the medicine. So I take my transfer pin, stab it into one of my bottles of medicine, then attach one of my syringes to the transfer pin. I slowly fill the syringe with the medicine all the while I’m thinking about how each bottle costs me $2,250, but I try to stay focused and not lose a drop. Then I attach the rate tubing to the infusion set then attach the now filled syringe to the rate tubing. I slowly fill the line with medicine and watch as each of the 6 tubes fill with medicine. I have to carefully watch each one as I don’t want any air in the line and I don’t want any medicine to sneak out at the end. Once the medicine is down the lines, I pick a spot to insert my first needle. I have to feel my stomach for hard spots to avoid as I have many from inserting needles all the time. I find a spot and stick in the needle, tape it down with paper tape and then cover it with the infusion dressing. I do this 5 more times. Once all my needles are in, I insert my syringe into my Freedom Pump and switch the pump to on. I still have one more syringe to fill before I can be done with this part, so I prepare the bottle, stick in the transfer pin, attach the syringe and again slowly fill the syringe with medicine and then attach a red cap to protect it.
Each syringe takes about an hour to be pushed into my stomach. So, I throw my trash away, grab my second syringe, get my water and make my way to the couch for a movie and a very careful cuddle while I get infused with the only thing keeping me walking. Every 3-4 days, for 3-4 hours I’m stuck (literally).
The process is painful physically as it leaves my skin very bloated, very tight and painful to touch. My boys usually look at me all hooked up and say either, “Are you sick mommy?” Or “I’m sorry you’re sick mommy.” They don’t understand how when they get sick, they take a medicine and it makes them better but yet mommy isn’t getting better and she’s always taking medicine. They try so hard to understand and many times I’m left saying, “Yes, I’m sick. It’s really confusing. It will make more sense when you’re older.” And then I wonder, will it really make more sense or are we just able to comprehend really sucky things better as adults?
Which brings me back to the entire reason I started this entry, I can’t wait around hoping for a different version of my life. This is my life. All of the needles, all of the pain, all of the time. I have no choice in the matter if I want to live. The only thing I can control in this sucktastickness, is my response to it. I get to choose how this disease dictates my attitude, my beliefs, my hopes, my dreams, basically everything that it can’t physically touch. I’ve chosen to try to live a life as best I can with the reality of death on my doorstep, and I’ve discovered something very profound in the process. Life can be full here. Sweets can be sweeter, the sun can seem brighter, the air cleaner, people nicer...love deeper. And while I long for my health back, I do not long for the old me. I don’t miss the me who got caught up in what others thought all the time or the me who felt like I had to compete with other church wives to be the best or prettiest, or most thoughtful or most whatever. I don’t miss any of that. What I have gained is far greater than what I ever could have imagined. This ‘journey’ (which I hate calling it that) has brought a clearer perspective on what’s really important in life, and that is the only reason I will say I’m thankful for being sick, because being sick still sucks!
I prepared our Christmas cards while I was infusing and my lines kept getting in the way. For whatever the reason, I thought to take a photo.
The juxtaposition of our happy, laughing family with my infusion tubes was a stark reminder that just because people look like they have it all together, doesn’t mean they really do. The things that aren’t represented in that photo are vast! A few:
-my CIDP
-David’s ADHD
-Daniels crazy 3 year old tantrums
-Jesses exhaustion from being on a deconstruction of self journey.
My point in this rabbit hole analogy, we need to stop judging each other by the little snippets we see. What lies beneath the surface, is far greater than we can know just by the few moments we see or the happy posts we read.
