Hopes…

Yesterday I had high hopes of all going well. It didn’t. I wanted to almost live stream what was happening, but couldn’t. I’m sorry. I’ll explain here.

I had a rough night on Wednesday night. Up late dealing with some kid issues and not getting to sleep until after midnight. I had to be up an on a plane at 8:30 the next morning. In Atlanta, that means up at 5:30 and to the airport. I also had to be fasting. I also just finished a round of amoxicillin after an upper respiratory infection. I also just got home from the West Coast on Monday late after a long day of travel. Also, while traveling, I skipped a lot of meals just because I was not in a place I could safely eat. It has been a rough couple of days.

I get on the plane and sleep for the 38 minute flight from Atlanta to Nashville. Rent the car and drive to the facility. We take my blood pressure (which was pretty low compared to all the other times), weight (I’ve lost more weight, but I had some to lose), temperature (97.3, normal for me), and a blood draw. All is good.

Then, Nurse Ratchet pulls out the big white box with all of my food challenge smaller boxes. She removes the one from the middle and mixes the drink. I watch carefully, but am not as intimidated as the last time. I’m a little more confident I can get through this with flying colors.

I drink the yucky, awful, overly sweetened, pink, terrible drink. It tastes different than the last time. Oh no. About 45 minutes in the feeling of nausea hits. I ask Nurse Ratchet if I can go downstairs to get some food. She says yes. I make a salad from the salad bar (note there are no croutons on the bar so no chance of CC), grab a bag of Smart Pop, and a Coke. I sit down to try to eat. Then it starts. I know its coming. I pack up and find the nearest bathroom.

I vomit the pink drink I’ve just consumed.

This is bad. This is really bad. Now, the mental gymnastics start. Was this gluten? Does this mean I’ve been getting placebo? Could the amoxicillin have caused this? Crap, crap, crap.

I try to eat my lunch – that was a bad idea. I probably shouldn’t have done that because I vomit all the food I just chewed up.

I go to take a nap in one of the treatment rooms. I still haven’t eaten. I sleep for about 90 minutes. They wake me up to take my blood pressure and more blood work. The final step is seeing the doctor.

I’ve been seeing this doctor since I started the trial. He’s very kind and a very good listener. We talk about what happened because I’m really upset and still feeling pretty lousy. I thought I looked great in the morning, but look lousy in the afternoon. We talk about my activity and how busy I normally am. I might be doing more now than I have been doing before. I might have C. Diff after the amoxicillin or maybe the amoxicillin has interfered. Before my endoscopy when I had to fast until 1ish, I also, threw up and had no medicine or anything. I might be dehydrated. My blood pressure might be low. Lots of things could have gone wrong, we just don’t know.

I leave and go to Outback to eat. I eat a full meal and a Chocolate Thunder. Then I go take a nap in the car. (PS – I parked at the back of the parking lot and 2 guys come up and park right next to me. What the heck?!? Yes the doors were locked and I was safe.) I drive to the airport and catch my flight home. I got home after 11. It was a really long day.

Today, I’m better, but still tired. My goal is to eat a lot today and to get some rest.

So, what does this mean? Here are my theories….

  1. I’ve only been getting placebo this whole time and had a gluten reaction yesterday. If that is the case, then what has been going on with the flushing? Do I have a new autoimmune disease, like Lupus? Did I clean up my diet enough that my other Celiac symptoms clear up? Because I have been more careful, but no dramatic changes to the way I’ve been eating. My home still is not 100% gluten free. Ugh!
  2. I’ve been getting the medicine but I went into today behind the 8 ball. I’ve been struggling with eating enough and getting enough rest. I wasn’t well prepared, so I couldn’t perform well on the test. I was going to fail no matter what because physically I wasn’t in a good place.
  3. I’ve been getting the medicine and it has helped with mucosal damage, but I will still get an immediate reaction. I’ve never had immediate reactions until I did this gluten trial. Maybe this is something new.
  4. I’ve been getting the medicine and it doesn’t work. This would be the most devastating news of all. I don’t even want to think about this option.

I want to quit. I’m frustrated and angry and confused. I’m sad because I’ve put a lot of hope in this medicine and what if? I’m just in a bad place today. It will take a couple of days to work through it and I will come out the other side. So bear with me as I wallow in my sadness for the next 24 hours. I’ll be better tomorrow.

On the bright side, even if I don’t get the medicine here, I’ll get the medicine eventually. That’s the only good news I have today.

One thought on “Hopes…

  1. I just want to thank you for everything you are going through for all the rest of us. I am so sorry you are going through this rough period, and I hope you feel better soon.

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