Today is injection day. Usually, I inject on Sunday and Thursday, but I have a food challenge tomorrow. I don’t inject on days that we do food challenges. I’m not sure why. Maybe I’ll ask that tomorrow.
This was injection 16. I’ve gotten 28 injections so far – 12 during the up dosing phase and 16 of the maintenance dose. All in my stomach and none of them painful. I will say the maintenance dose self-injections are a little more painful than the up dosing, but I would not call any of them uncomfortable.
Tomorrow, I go to Nashville but it doesn’t make me happy for two reasons.
First, I have a food challenge. It is exciting because I might get gluten and find out this stuff is working. Or I might get gluten and find out this stuff isn’t working. Or I might get placebo and have no reaction at all. I have to fast, too. That makes me unhappy. I don’t do well without food, but I’m stuffing my face today to make tomorrow go well.
Second, I’m tired and I’ve worn out my family. I’m really tired. Two weeks ago, I had a great time in Nashville with my girlfriends and stayed up late. My family rallied and helped with the kids. Then, I went to the West Coast for 5 days to help a relative with recovery from a stroke. My family rallied and helped with the kids. Going to Nashville tomorrow. My family will rally and help take care of the kids.
My husband and mother are exhausted. They have been really great in helping do my job while I have been traipsing around the country. They have done the heavy lifting of caring for the kids while I’ve been gone. And I am forever grateful that they have been supportive and willing to help
But here’s the thing – this is temporary. This fatigue and all of these challenges we are facing are temporary. If this stuff works, it is (hopefully) a permanent change and cure for a disease that was affecting us dramatically.
My health was not good. I could exist, but I wasn’t really feeling good. This fatigue I’ve got now is manageable, but isn’t down to the bone tired like it would have been before this treatment. I could not have maintained this schedule before this trial. I was feeling this tired after day to day life rather than after extraordinary circumstances.
I had to stop exercising. I enjoyed Crossfit and tennis. I could not exercise on back to back days because I could not recover. No matter how much rest or proper nutrition, I could not recover from the workouts.
I was gaining weight. A lot of weight. I gained 40+lbs in the course of 3 years with not change in my diet. I saw endocrinologists, gastroneterologists, functional medicine doctors, nutritionists, and my general practitioner. None could explain it. I could skip meals, eat small meals, create a calorie deficit, eat paleo, eat whole 30, and eat atkins-style but to no avail. I still ate a gluten free diet without many gluten free items, so I had little processed food. I was exercising as described above and when I stopped exercising, I made sure I got 10K steps a day. I was doing everything I could think of to stop the weight gain without any relief.
At one point one doctor recommended bariatric surgery – I left that day crying because I knew that wasn’t the issue.
Now, the weight is slowly coming off. My body is different. I hate scales, but my clothes are starting to get too big. My wedding rings slide easily on and off my fingers again. I felt the lightness today on the tennis court and I could not have done this before. Yesterday after a long day of travel the day before, my mom said that I looked healthy again.
I still don’t know if I’m getting the medication or not. I just have a guess.
While right now it is a tough time, I’m still hopeful. I’m hopeful I’m getting the medicine and that its the cure I need. I gotta get through the dark tunnel of fatigue to come out on the other side healthier.
That’s why I’m doing this – for my health. My health is worth all of this and I will be better because of this trial. The decline in my health was slow enough that I didn’t realize how bad it was but looking back it was really, really bad. Now, my health is pretty good on the way to excellent and though its been tough, its certainly been worth it.
I think that’s enough rambling for today – but my point is, this trial has not been easy. I’m going through a hard period right now and I’m still grateful to be doing the trial.