I am currently starting a new medication for MS called Tecfidera. Much to my chagrin, the first month of this medication has patient reports of mega GI issues. So “mega” that many patients with normal colons stop the medication. Jackie, why are you such a dumb dumb and taking this med? Well, in terms of MS medications the options are limited because I am not “compliant” with taking injections. Which basically means no matter how many times I start an injection therapy, I forget, don’t want to, or whatever other excuse there is for not taking it. Last year I tried Gilenya, which was the first oral medication released for MS, and well…I can’t take that one either. So I’m here, trying Tecfidera and all was well for the first week or so but now, its just dehydration all over. My poop is 100% liquid, and I haven’t been eating much because it makes me feel super nauseous. I even had an accident last night because the stool was so loose. This literally NEVER happens to me. So this brings me to my favorite IBD delimma, to ER or not to ER. Before you give me the lecture, just know that I will probably wait until the last minute to go because its what I do.
BUT the whole point of this thing is symptoms of dehydration because so many are obvious and a few are not so obvious. So when I’m dehydrated, here is what I feel.
Extreme fatigue (I’m sleeping like 11-12 hrs a night and its not helping)
Dry and itchy eyes
Sore throat or a “sick voice”
a heavy head, it feels difficult to keep it held up
It feels like I poop liquid more frequently, almost as if my body is tying to deplete itself
Contrary to most people, I don’t feel thirst. I actually do not want to drink at all
Dry skin on my face and hands
Constant headaches all over my head, unlike a cluster headache
difficulty with breathing
everything is slow, my walking, my talking, my thinking, everything
fever or hot flashes
I also feel very cold and get chills often, regardless of the hot flashes
heavy heart beat. When I lay still I can feel my heart moving my whole torso when it beats.
Sore back between my shoulder blades
So what do I do about it? First I get really frustrated and angry. Then I load up on Smart Water (because I truly believe it works). Then I sleep a whole lot. I’ve been pretty depressed lately, so I’m doing my best not to cry. There are these hydration packets that I think I’m going to try this time. Frankly there is a huge part of me that wants to just give up on the home hydration because its exhausting and very frustrating. But someone once told me the importance of taking control of your health even when its going down hill. I recently learned that the way you do or don’t take care of yourself can frame how someone views you. I always make jokes about my future, and how pitiful it maybe, but I learned that not everyone thinks those jokes are funny.
Frankly, I’m tired of taking care of myself, but you know what? You do what you have to do and hopefully this time won’t involve the ER.