I feel like a fly on the wall sometimes-watching all the people run around their busy lives. I see myself as I must have looked to others in my previous life. They are rushed, overwhelmed, have little time to accomplish everything, while I now sit there just observing.
So here it is…an update. I’ve been stumped recently as far as what to write about. I don’t want to complain about every little discomfort and I am lucky for the most part to be comfortable as long as I am resting. So I’ve been resting (for a year!) and have watched my previously toned body grow flabby and out of shape. I don’t really care (that much) anymore because the material world has become so much less important to me since this whole journey began.
I write these updates for other people. I have always found it easier to express myself in writing. Mostly I want my children to know what this disease really was for me. Right now my focus is on keeping the home happy and don’t feel they should be burdened by my chronic illness. But one day in the future, they might be interested in understanding what exactly was going on with me. So at home I put on the happy mom face and pretend that I am ok. Inside I am uncomfortable, in pain and unsure about the future. My youngest children express a lot of frustration about my inability to do things which prevents them from having fun like all their other friends. While I try to explain to them that every family has issues and that while things might appear perfect on the outside, nobody knows what really goes on at home. But this provides little comfort for my youngest who periodically rants his frustrations.
I also want to update my friends and family who cannot possibly understand what would keep someone at home so much that they cannot participate in social functions. How can they possibly understand when Sarcoidosis is one of the least understood diseases in medicine? I certainly never learned about any of this in medical school. Some people think I am just suffering from depression. After all, what else keeps a person in bed? Little do they know that I am so happy in the company of my furry buddies and cannot wait for the fog to lift so that I can get on with the next project. Since my illness began I have wallpapered multiple walls, remodeled my kitchen, painted and installed flooring and finished many other creative projects. Each day I have about a two hour window in which I can choose to grocery shop, do a project, clean the house or take care of laundry, not to mention myself and make dinner.
I had a wakeup call over the Memorial Day weekend. I recently received my first dose of Rituxan, a new infusion medicine that’s kind of a last resort, kind of experimental. My neurologist has some patients who have done well with it and he recommended that I try it. I had a dramatic improvement in the brain fog since that first dose which was very exciting but nothing else really changed. However the brain fog is so debilitating that I will celebrate this one improvement.
It was enough to plan a get-away to New York with my husband for one night and so we went. We really just took it easy. He drove the whole way, we checked into the hotel, ate some lunch and took a leisurely stroll over to Times Square. In and out of shops, relaxing, after a couple hours the pain began. In my toes, in my back, first burning then full on pain, requiring me to return to the hotel and rest. By the time we were in the hotel elevator my feet were bright red, engorged and swollen. Rest relieves all this but in essence keeps me bed bound or couch bound for most of the day.
I was ruined for the rest of the trip. The next morning I noticed that my right eye had again turned inward and I realized that my hearing is bad again. Not sure why, but the disease definitely prefers the right side of my body. My right hand and foot are often a different color than the left. All the pain is on the right side. Except for the arthritis which is everywhere!
And then there’s the plumbing…For that I will leave you with a short infographic which, I’m told is a wonderful way of explaining things! In the progression displayed in the infographic, I am at the point of “Peristeen.” I will leave you all to wonder what that is, or maybe to google it. And I have decided that I would rather die than even consider the possibility of Cecostomy…(even though my gastroenterologist says “it’s just a tiny hole.”)
So every day I wake thinking that it’s just a regular day like it always was. I try to ignore the nausea and fullness from dinner which was over 10 hours ago. I take my medicines, start sipping the coffee and wait for the fog to clear…onto a new day!