May 2019

I’m tired. I mean i’ve been walking around, for weeks, tired. Or, actually, not really walking around. Just laying in bed. For as long into the day that I can, as early at night as I can, sleeping in the car, sleeping on the couch, closing my eyes at work, TIRED.

Last week’s blood work told us i’m iron deficient, which explains it all. This week I started B12 shots, and hematology has put us on for the soonest opening to start iron infusions… too bad it’s not until July! Haha, hope no one needs me for the next two months, cause i’ll be in bed.

My feeding pump rate is really slow. For reference, most people would take their rate at 100-200 ml/hr. I take mine between 15-20 ml/hr. Part of this is because my feeding tube is a GJ rather than the typical G, which means it goes into my small intestine (jejunum) instead of my stomach. It’s just smaller, and tolerates less. Another part of this is also caused by my inactive large intestine (a whole nother can of worms), meaning, although we’re avoiding my stomach by sending the food into my jejunum, it can’t get past that point because of the block at my large intestine. So it’s a lose / lose there.

Because my rate is so slow, it’s hard for me to get a decent amount of nutrients each day. This is the cause of my vitamin deficiencies, as well as my struggle maintaining a healthy weight. Both of which are especially problematic these days, along with my chronic muscle / joint pain.

Being tired is my main issue, though. It’s even hard to talk myself into brushing my teeth in the morning. I just kind of look at the toothpaste and think “eh…nah”. Very similar to just being lazy lol.

My treatment plan as of now is to continue getting the B12 shots weekly, start the iron infusions as soon as possibly (weekly), and we’re moving forward with getting clearance to start IVIG infusions. Some of you may remember these from last June when we tried receiving them in Jacksonville at Mayo. I had two sets, and then had to go to the ER for a migraine the morning of my would-have-been third dose (migraines are one of the possible symptoms of this treatment, along with blood clots).

A few weeks ago, my doctor gave us our only option left : to retry the IVIG.

I’m not really one to sit around and watch my life crash down around me, so here I am, trying it again. This time, though, I’ll be doing it at Hopkins, sleeping in my own bed at night, Drew will be near, and my own “home” doctor will be in charge of the infusions. He’s also going to be taking some extra steps to try and prevent the terrible migraine-situation that happened last time (sounds like i’ll be on steroids- he says this will cut the chances of migraines in half).

It’s been nice with the fresh weather these past few weeks. Even with my 0% motivation to brush my teeth, it’s nice to wake up, throw on a dress and go sit outside. That’s one of my favorite things about warm weather- between now and September, I never have to wear pants. Dresses all the way.

Prayer requests :

• For a spot in hematology to open up ASAP so I can start my iron infusions

• My joint / muscle pain decreases (specifically shoulders, hips & knees)

• That insurance will approve IVIG

• No migraines (once we start the infusions)