I thought it was about time to catch you up on The Constant Companion. Bottom line? I’m sick of being sick, but I make prudent choices so that I can continue to enjoy my life. For readers with chronic disease and autoimmune illnesses, if I can do it, you can do it!
Stuck In A Room With No View
Upon my arrival in Palm Springs, the first thing I needed to do was arrange an Entyvio infusion. Two months on the road had flown by, and I was nearing the deadline for the next round. I heard horror stories about healthcare in the Coachella Valley, which is curious to me when so many of its residents are at an age where quality healthcare is so crucial. I was about to experience it first-hand.
I was spoiled in Seattle with visiting nurses at home, and beautiful city views from my private room at the Polyclinic Infusion Center! The Palm Desert infusion center (I am not naming names here because I must return for one more infusion before leaving Palm Springs), is one large room with the sick and elderly seated on every square inch of its perimeter, getting various and sundry infusions. Most appeared to be receiving chemotherapy for cancer. I suspected one patient was HIV/AIDS positive. At least three patients were practically skeletons in meat suits, shuffling along, backs bowed, heads bowed.
The stack of paperwork I was given to complete was daunting, even for someone like me with most of my faculties, a smart phone full of addresses and telephone numbers, and access to the internet in case I needed other information. The forms had been photocopied so many times that they were askew on the page and sometimes hard to read. Many of the questions were redundant and/or did not apply to my situation.
It took over a half hour to complete the written intake, which did nothing for my good humor. I was finally taken back to the large room, where I sat for… wait for it… 1.5 hours, for my bag of medicine to arrive. No one could really explain why it was taking so long, except to say that I was a new patient.
In the old days the infusion itself took over three hours. The Entyvio infusion takes about a half hour. However, in the Coachella Valley, apparently an Entyvio appointment is 2 1/2 hours long. I know, I know: First world problems. Still, it was exceptionally annoying.
Beware Of Poison
I am dissatisfied with and still scared of the methotrexate I continue to inject into my abdomen once a week. We reduced my dosage when 1 mL resulted in a log jam so bad that my stomach was hard and distended for several days at a time. But mind you, the growling and gurgling of my guts continued always, letting me know that, as soon as the narcotic-like effect of the drug wore off, it was to be business as usual. Now, along with the gift of nausea for the entire day after the injection, I have one day of no bowel activity, followed by four or five days of the same mad dashes to the restroom, with severe abdominal cramping serving as the starting gun. Ready, set, go! You have two minutes before that atom bomb explodes!
At my most recent hair appointment I asked the stylist if he thought my hair was thinning. He said he would keep an eye on it, and I will see him two more times before I leave Palm Springs. I fixate with dismay on the brush each day, wondering if I am imagining things or if my hair is falling out due to the drug. It is a common side effect, but my doctor warned me at the outset not to overreact if I saw a strand of hair or two in the drain. We shall see. I’ve always wanted to change wigs like I change my clothes. I may get my chance.
Adjustments And Compromises
In the meantime, in between time, I have Starbucks on Palm Canyon Drive, Starbucks on Ramon, Taco Bell on Highway 111, and Starbucks on Sunrise, none of which have bathroom door codes, to thank for my dignity. I took a walking tour where bathroom breaks were specifically scheduled, which gave me peace of mind and ended up working out smashingly. I am volunteering at the Palm Springs Historical Society, where I have access to bathrooms when working at the main building or at the Cornelia White House, where I have been serving as a docent.
I was asked if I might like to conduct walking tours, but that’s just too iffy with my condition.
I return to Seattle in March for a colonoscopy and a re-group with my G.I. doctor. I really don’t want to stay on methotrexate, and so far Entyvio has not produced the remission we all hoped for. Yet and still, I am determined to make the most of my life and my situation. Except for The Constant Companion and the drug arsenal, I really have little to complain about. Besides, into each like some rain must fall. The Constant Companion just happens to be my burden to bear.