by Chris Burton
“Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest.”- Matthew 11:28
It’s been a week. I find myself, at this stage of recovery, able to handle one big errand everyday. Most of those errands are doctor appointments but some days I have felt adventurous/energetic enough to do a little more. Last week Tuesday, for example, I went to the doctor’s office, the supermarket and felt good enough to cook dinner when I got home. It was great and gave me a slice of the normalcy we often crave when we are recovering. The next day I could barely get out of bed. If you’ve never experienced fatigue, it isn’t the same as being sleepy. With fatigue you can be wide awake but feel like someone is on the floor below you, pulling you under with an industrial strength magnet. The only thing you can do is rest.
This upcoming Monday will be seven weeks since I have been discharged from the hospital. My normal now is being home with my family while taking my medicines. I must confess that this was not initially welcomed by me. Every good day (and even the occasional great moment) led me to feel like I was “back” and ready to get back to normal. This overconfidence would soon fade as I got exhausted or met some difficulty (i.e the betrayal of my body by lupus) that would humble me. I recently got a new primary doctor and I was explaining to him that my former doctor approved medical leave for me until June. Without batting an eye or having a moment to reconsider, my doctor said “Yeah that makes sense. You need it.” It was a relief in some regards because I felt like it gave me permission to rest but my ego was like, “Man, how sick am I?”
So I say that this has been a week because I met with five different doctors. On Monday I met with my rheumatologist who said that my labs look good. He gave me information about a drug I used to take in Charlotte called Benlysta. Five years ago I took the drug via infusion at the rheumatology office but the drug is now available in subcutaneous form.
I met with my cardiologist on Tuesday. It was our first time meeting but we both felt like we had met before. I had gone to that office in November for an echocardiogram and my doctor remembered me because she sent an urgent message to my former doctor. The echocardiogram in November showed a vegetation on one of my heart valves that, if left untreated, could permanently damage the valve. Tuesday was the first time I learned this (no clue why my former doctor neglected to tell me this information) and the first time in a few weeks that I got really scared about my health. Chronic illness has made me more comfortable with my mortality but even still I was like, “Bacteria on my heart? How does that happen?”
My cardiologist does not want me to worry about this. She has scheduled another echocardiogram for me and has me wearing a heart monitor for a week since my heart is still working really hard. (On the day of the appointment, walking from the car to the doctor’s office felt like I had just finished playing full court basketball.) I get fitted for the monitor on Monday and figure that it will enhance my playtime with the boys since I’ll look like Tony Stark with it on.
Wednesday was the busiest day of the week as I went to the nephrologist and coumadin clinic. I first met my nephrologist while I was in the hospital. Very happy to report that my kidneys are functioning properly. He checked me for swelling in my feet and legs (a big problem even a week or two after I came home) and I have none! I asked him about deodorant (they come with warnings about kidney disease) and alcohol. He told me that the deodorant was fine and to only have one drink this weekend (celebrating Bri’s birthday!). Well I had my one drink, a refreshing Blue Moon, and was in bed all day Saturday. Not that I was ever a big drinker but I will probably avoid alcohol going forward.
I didn’t have any appointments on Thursday so I was able to visit with one of my friends. It felt so good to walk outside by myself and sit in a coffee house. (Oh! How could I forget another landmark of the week! I took a Lyft to a doctor’s appointment independently.) This recovery is filled with ordinary moments that feel like real breakthroughs simply because of how difficult life has been.
Lastly, I met with my GI doctor on Friday. While I was in the hospital, I had an ulcer in my stomach that bled enough for the doctors to cauterize it. I have not experienced any discomfort since but he wants me to finish my omeprazole and do a stool lab in the upcoming weeks.
We celebrated Bri yesterday (truly, I thank God for Bri everyday) and were supposed to have a date today but that fatigue hit me like a ton of bricks. I felt like crap emotionally because I really wanted to go out today but the rest was necessary.