“I died as a mineral, and became a plant. I died as plant and rose to animal. I died as animal and I was Man. Why should I fear? When was I less by dying?” (Rumi)
Monday was a planned visit to Dartmouth Hitchcock (12/21). I go monthly for Venifer Iron infusions, see my GI, get blood drawn. Every three months I see endocrinology to touch base on my Hemogloblin A1C (average blood glucose over 90 days) and how I am doing with adrenal sufficiency, weight stability and an overall checkin.
Monday I had all of the above scheduled and an hour long visit with the Diabetic trainer to get loaned out a Dexcom G4. It is a continuous glucose monitor. There is a piece with teeny tiny needles that sticks into a fattier portion of skin and sends data every 5 minutes to a receiver about what my blood glucose is. I set thresholds of 200 (high) and 80 (low). My issue is lows primarily and diabetic coma is a real concern for me given my lows have hit the high twenties.
It’s a small and inobtrusive unit, which in 36 hours has been very helpful.
Soooo, when we arrived at Dartmouth I pulled out my iPad which happened to have thick, reddish, gross puke on the case. I showed my GI. He was rightfully concerned and wanted to do an add-on let’s not wait EDG to be sure there was not an active source of bleeding in there, which is the #1 side effect of a Rou En Y, which I had in March 2015.
I had woken that morning with thick, sticky, reddish vomit all over me and all over our bed. Nitza woke me very startled and worried when that was the scene she opened her eyes to. I had thrown up in my actual sleep (which obviously runs the risk of aspiration.)
Needless to say, no appointments went as planned, which was okay. Awareness and proactivity is good.
It ended up that there was no active source of bleeding and my stomach lining was status quo in terms of normal disease state and progression.
I had to stay overnight.
This was so hard for Ale… who knew we were going north but we have to be explicit and very real with him about our comings and goings as he has developed some anxiety around my illness. We did not expect to be overnight at Dartmouth so he had no idea we were going to be overnight at Dartmouth. This caused some panic. We were able to mitigate it over the phone…. and he got to dogwatch our puppies at his dad’s house which proved to be just the little adventure he needed!
I saw the endocrinology trainer on Tuesday and my endocrinologist. Both were ok visits. The endocrinologist changed type of insulin and we got a rescue glucogon kit for Nitza to use if I am unresponsive to get my sugar to go up.
Sometimes adult awareness is really fucking hard. I know I’m sick. I know I’m not stable. Knowing that and seeing hard data every five minutes flash on a screen is hard. Throwing up every ounce of anything that goes into my stomach is brutal. Experiencing the level of pain I have the last few days has catapulted me into a darker place.
and I won’t get better.
That’s fucking hard friends.
We are in a bumpy, jolty pattern of treating symptoms. I’m trying to stay out of the hospital… shit every one really is right? Last Christmas I ended up in the hospital to have a 4 hour surgery 2 days later. That’s not where I am today, but I’m dehydrated and sad and even a little angry. I guess more than a little angry and tired.
So So very limb dragging tired.
I am good at getting up and doing life. I have never been kept down. I am certainly not going to start now and I know with the cyclic nature of this disease my days will be better and sicker and better and sicker. Today happens to be sicker. My stomach burns like someone is spinning 1990’s teal blue TransAm tires out on it. Back to full liquid diet, which means weight loss… but I can’t do the pain and vomiting.
I don’t have this go ’round in me. I need to make this Christmas amazing for my boy… I need to jump around and play and be sooooo excited with him because I missed last year and because I need his memories to be amazing. He deserves that.
We deserve that.
The road is winding and long…and I am so incredibly beyond words blessed that I married my best friend and she doesn’t falter when it comes to caring for me.
How can I ever fully reconcile where I end and she begins because she has been the hands that brush a cool washcloth over my face when my own can no longer reach? She has been my legs, carrying me up stairs and into shower stalls. She has washed my body clean of medical tape, iodine, sutures, and bandages. She has rocked me to sleep when fevers warm my body past comfort. Can we go back to the time when I wasn’t bedridden and you were attracted to my badass spunk? Do you even remember those days? You warn me, like you warn our ten year old son to be careful before I cross the street, or drive to the doctor, or walk up the stairs or try to take care of myself. You have become, slowly over time, my caretaker. I have been the sick. I want your eyes to look at me with intrigue, not worry. I want you to engage me as an equal, not cradle me as a child. Years cannot be undone. You are my best friend. You know the scent of my skin before it burns with fire. You know the way I hold my body before I keel over vomiting liver bile stones. You have never known me healthy. My soul longs for the us of nine years ago, a freedom before the darkest of our days came… before I needed you, when I wanted you. Do you remember? I look into your eyes and see unrelenting love. I see caring and warmth. I see unconditional love. I see you. The you that has always been you.
Please don’t forget that I’m in here… I’m just camouflaged by fevers and pain and vomit and fainting. It’s really me though.