Did you know my skin is yellow? For the last several months I have been told this and, honestly, I never really saw it until just the other day when I peered down over my belly and noticed my feet. The tops of my feet were this bright yellow hue that looked like someone drew on me with a highlighter. I remember thinking, “Ah ha! So this is what they meant!” Now, the yellow eyes I noticed—not as much as other people did—but I was aware. I often thought my eyes looked more Chartreuse but who am I to argue, right? But, the yellow feet just looked ridiculous. The epidermal color change caused me to think about what other aspects of my life have been impacted or altered because of this whole liver thing.
Sitting down. Sitting is probably the most annoying and difficult thing for me to have to deal with because of all the pain involved with just sitting. Seriously! Between the minor pain that regularly radiates up the right side of my abdomen and the occasional fluid build-up in my abdomen, any kind of position that has me at a near 90 degree angle (like sitting, bending over, etc) quickly can become very painful.
On typical days, this can be easily managed by avoiding to sit down too much (which is actually healthier for you if you can manage to sit less and stand and walk around more) and using couches to sit down whenever possible. So, you can imagine how painful flying on a plane can be for me. In general, flying commercial is essentially paying for some kind of CIA water boarding torture and psychological abuse between going through security and trying to actually sit in their “chairs” designed to elicit confessions out of the most hardened criminals (I swear those airplane seats are endorsed both by Attica and San Quentin Prison Systems). We are supposed to fly to Boston over Thanksgiving…that will be a fun trip!!
Joint pain. The muscle loss has depleted not only my winter insulation for when I return to the Tundra of New England, but also taken away any “cushion” around my joints in my back, shoulders, ribs and knees. When I wake up in the morning or when I am stationary for too long, my joints will start to throb. This is why I tend to stand up and move around during meetings that last longer than 20 minutes.
Funny comments from total strangers. Here are some of my favorite comments from complete strangers I saw on the street, or in the supermarket or some other public location:
“You really need to ask your doctor for a blood test. You don’t look right.”
“You really should go see your doctor. A friend of mine looked just like you right before he up and died.”
“Hey, did you know you are all yellow?”
“Wow, you need to take some vitamins because you have some kind of vitamin deficiency.”
“Wow, you have a big belly! Just like Santa Claus!” (Gotta love the honesty of 6 year olds!)
“Your eyes are yellow and that means you drink too much or you might have hepatitis or a liver condition. Have you seen your doctor? (I was laughing so hard at this one!)
“You look like Big Bird!” (Yup—a random 4 year old—also good for a belly laugh!)
The more insensitive the comment is, the funnier it is to me because I am always amazed at how off the wall people can react to an uncomfortable situation.
Fatigue. Yes, I do have a different energy rhythm than in the past. I take a 30-40 minute rest pretty much every day in the early afternoon. This allows me to have regular energy for the rest of the afternoon and evening. I am much more productive in the morning than the evening. So, this means fewer evening activities when possible. This does not impact my productivity or what I can get done. I just need to recognize the new energy rhythm and schedule my day around the rest period.
So, yes, though I love to live in as much denial as possible so that I can remain cheerful and positive, I do recognize that some things have changed for me. The good news is that once we get the transplant, this can and will all revert back to normal. I am lucky because transplant does mean a full recovery. And, I have not been fully recovered in years so it will be exciting to see what this actually feels like when we complete this journey!! Good news ahead for sure! Because, you know, yellow has never really been a good color on me!