I’m in a tough place today.
It’s April. The stretch of time between March 14 and April 17 is hands-down the hardest time of year for me to face. Everyday, small stresses are harder. Everything cuts sharper during these few weeks. I simultaneously love and hate this time of year. The bluebonnets are out. I’ve always loved the fields and fields of blue along the highways during March and April. The natural beauty is a reminder that life goes on, even after things that make you feel as if your world has ended.
I spend this time of year trying both to remember and to forget. Kenneth’s birthday is March 14, and the day he left this Earth is April 17. I want to remember his life, but I would so dearly love to forget certain things. If you’re a parent, you know that when your baby hurts, you hurt. It’s so much worse when it’s a hurt you can’t fix with a cuddle and a kiss. It’s galling that my love as a mommy wasn’t enough to make it all better, that instead Kenneth’s suffering was ended in the way, ultimately, all of our suffering will someday end. I was supposed to go first, not him.
I’m in the middle of a health flare. Food is back to being my enemy, after a solid year of having a good enough handle on what to eat and what not to eat that I’ve gained back 10 pounds. I’m no longer so thin that strangers feel the need to comment on it. It’s a very uncomfortable thing to have the feeling that people are judging you be confirmed by the snide “Girl, you need to eat a cheeseburger” comments. I eliminated wheat and a bunch of other foods from my diet and added a nightly glass of red wine. Hey, calories and heart health, right? I take my Domperidone (medication for my Gastroparesis) three times a day. I was actually eating normal-sized meals and relatively normal foods, with a few nods to my cranky gut in the foods I avoid. It was working.
For two days now, I’m back to being nauseous and to feeling full quickly. I’m also having some autoimmune symptoms, mainly in the form of fatigue and all-over pain, so I think I’m just in a big fat flare overall. I’m taking Plaquenil and Prednisone. Plaquenil is an anti-malarial drug that is also known to reduce inflammation, but it can take months for it to become effective. Prednisone is a steroid that works quickly to control inflammation, but it has a lot of very unpleasant side-effects if taken long term. Since I was just diagnosed with the Mixed Connective Tissue Disease in November, the idea is that I’ll take a low-dose of Prednisone until the Plaquenil starts working. The problem is that so far, the Plaquenil has not been working well enough. My rheumatologist started making noise about Methotrexate at my last appointment. I’ve convinced him to let me try the Plaquenil for another few months before we go that route. Methotrexate is a chemotherapy drug, and it scares me.
When I feel good, I think “I can do this. I can keep working full time, manage these diseases, and be a good mom.” When I feel bad, like I do today, I start to wonder if it’s just a matter of time before I end up having to quit work. I have quite literally trained my entire life to be able to have a career in music. Music is not so much what I do as it is a piece of who I am. Further, I’m a singer. My body is my instrument, and right now my body seems hellbent on destroying itself a little at a time. Lung issues are common with my autoimmune disease. Lung issues would be devastating to me as a singer. The unknowns of this disease are terrifying.
I see the irony in how I’m feeling today versus my last post about positivity. Tomorrow, I’ll pull up my big girl panties and deal with it again. Today…. well, today, I’m going to engage in a little therapeutic whining that will hopefully help to silence the little voices in my head that say “It’s too hard. Can you really keep doing this?”. Blogging helps.
So does Netflix.