Six days have passed since I last posted. Six sunrises and five sunsets. As I sit here at my desk in the early morning hours - the quietness of the house, windows open, birds at the feeders, dogs asleep at my feet - it's a familiar peacefulness. Much like the last time I sat at this keyboard to bring my thoughts to you. It's so funny how things remain unchanged - or better yet, constant. More like a river flowing. From a birds eye view we say, "Ah, there's the river!" Constant in it's "river-ness", but never the same. Changing with each molecule that rushes by. Hidden under the shiny blanket of familiarity.
|Photo by David Ralph Johnson|
This brings me peace. As I sit here, thinking about the rush of the river, the current of my life, I am comforted greatly by the things which surround me in this moment. Birds, breeze, sun, the smell of summer - I feel as if I am experiencing them for the very first time. These timeless gifts - all new, here for me, in this beautiful moment.
|My mother and grandmother.|
|My bother Jimmy.|
Monday morning came all too quickly, and I was back at the hospital for appointments and IVIg. I don't know if it was the break in routine that came with a busy week of company or just my current state of mind, but I found myself quite contemplative this day. My first appointment was with the health psychologist that I see every two weeks and it might come as a big surprise (I say this with a tad bit of sarcasm), but I was extremely "weepy" at this visit. Hum...go figure!
I opted to sit up for my infusion this go around. I usually request a room with a bed, since I'm there for over five hours. But for some reason, this time I wanted to be more alert.
This is me. As you can see, I'm still awake. Prior to the actual infusion of IVIg, I get a nice dose of IV Benadryl, which usually knocks me out for a good four hours or so.
Before I entered into the "lights out" phase of things - I snapped a few shots for you...
Hook up. Standard conversation prior to "the poke". Nurse, "You have great veins! This should be no problem."
Me, "Looks can be deceiving. I have tough skin, my veins roll and are full of valves."
On average, this takes at least two tries. The good side of peripheral neuropathy...loss of sensation!
Blood pressure, heart rate and temperature. Standard checks before, during (every half hour) and after infusion. Handy little machine. Wish I was WelchAllyn.
Indeed! This great invention carries all the good stuff and is easily transported into places such as the bathroom. Unplug, hook and roll.
They all look alike. It doesn't matter if your in the ER, in an actual hospital room or sitting in the specialty clinic - they all accomplish the same goal and sound the same way when the doctor comes in.
Examination gloves by SensiCare - small, medium and large.
Stick to IV tape, smell funny and make great rooster combs when blown up. Powder-Free Nitrile. Well THAT's good.
Discussion topic at our house: Is it ethical to take a rubber glove home with you? Hum.
Baxter. That's the brand name of this device.
Every time I look at this machine I think of my daughter's dog Baxter. Both small, both wonderful...both make shrill noises when upset. This regulates the flow of anything going into my veins. It's really quite amazing. I've learned to read the screen very well and can pretty much tell you what's going wrong before you look. Most times - just air in the line. The speed at which I receive my infusion changes every half hour until the max rate is reached. This prevents adverse reactions - which are no fun.
One last look at the clock.
The curtain, again.
There's a whole other story in this picture - I'll save it for another day. But I'll just say this - in a dark room, when you're sick, or afraid, or lonely - the light on the other side of this curtain almost feels like the light from another universe. It can feel as welcoming as heaven or as far away as "infinity and beyond". I've spent many, many hours longing to be on the other side - in both situations.
|Yes, I have my shoes on. My feet are always cold!|
Only recently have I entertained entertainment. I set things up before I fall asleep as it would be next to impossible for me to accomplish this after. Since there is no cell phone reception in this area I communicate with Dave and the kids this way. As I watch the Baxter and account for things such as occlusion, ten minutes for clearing the line with D5W and IV removal - I can predict my time of departure within about five minutes. A quick message to Dave on facebook and he is out front waiting for me when I'm done.
That was my Monday, in a nutshell.
Tuesday home. Wednesday back to the hospital to see my cardiologist. I've been struggling with some arrhythmia/atrial fibrillation/tachycardia issues for some time now. Right before the big graduation festivities I had met with Dr. Chen and discussed the need for some minor heart surgery. We agreed to put me on a low dosage of medication and postpone things until after the graduation. That date was yesterday. I've been put on a cancellation list for July. If there are no cancellations, then surgery will be August 5th.
The surgery is called a catheter ablation and has much less risk than putting me on antiarrhythmic medications, which could potentially be life-threatening. A risk that is significantly increased by my diseases and the medications I am already on. If successful, I would be completely off all heart medications!
Today is Thursday, and as I sit here and write, the Governor of Minnesota and the heads of the House and Senate are sitting behind closed doors, only eleven hours from the second state government shutdown in Minnesota history. Their inability to to agree on a budget timely could mean the layoff of thousands of state employees and the loss of services to many of Minnesota's most vulnerable populations. My husband and many of my closest friends will not have a job on Friday morning if this is the case.
The river rushes on.
The birds, the breeze, the sunshine through my window - they cover me with a blanket of familiarity that still brings me peace. When all else surges by, I find myself motionless in this moment. Alive. Awake.
And I am completely aware that I have everything I need - right here, right now.
I wish the same for you. Whoever you are - wherever you are. Know that this is possible. Know that the greater the storm, the more beautiful the peace.
It's there - waiting for you.