© 2013 jen

Fit-tastic Update: Back To Reality & My Disease

I though it would be interesting to contrast this post that I wrote a week ago about a Celiac episode I had, against the health that I feel this week. Just over a week after feeling so bad, now I’m feeling great again. It’s the reality of living with an auto-immune disease – falling down and getting back up, again and again.

I went out with a friend the other day; we met at a little restaurant/bar that isn’t far from either of our houses.

She had ordered some chicken skewers, which I ate most of, and then I was still hungry so I ordered the mezza plate, making sure to ask them to substitute the pita bread for veggies. Then I asked about their falafels, wondering if they were gluten free. The server asked the cook who said, “Yes, they are.”

I had a good time with my friend and went home. That night it started: my legs started seizing up with cramps. I thought that was strange, but that was all and I went to bed. The next morning I had the feeling that I was hit by a truck. I felt slow and sluggish and like my body was hurting all over, but that’s not enough to keep me in bed, so I got up, went on a walk with a friend, and  even told my friend, “I may have gotten some gluten yesterday. I’m feeling weird and off.”

Off and on all morning I had the sensation that I’d swallowed a knife or maybe something even smaller like a razor blade.  I had sharp little pains that moved down my digestive system, sharp little reminders that my body wasn’t happy. There was no cramping, only knifings, or deep raw internal razor burn.

Next I went to an exercise class, because even when I’m sick, I’m still a strong person and I thought it might help me feel better. I really struggled to keep up in my exercise class, but that didn’t discourage me. There was a time not that long ago when all exercise was hard for me. I’d get so out of breath so easily before I was diagnosed with Celiac disease that I’d feel like I could faint, so I’m not one to feel self-conscious or defeated by a workout that challenges me. I’m used to challenge.

By the end of my class I was yawning incessantly. I felt like I couldn’t get enough air in my lungs. I yawned and yawned and yawned with a feeling of air hunger. I couldn’t catch a deep enough breath.

I had errands to do, so I did them, yawning all the while. I was feeling more and more tired. By the time I got home I was so tired, I went straight to bed. It was around 11:30 a.m.

When I awoke it was 3:30 in the afternoon. The knife in the stomach was gone and so was the yawning and I felt better, but not 100%. I felt like I was living under water that day. My reaction time and movements were slower than usual. I kept forgetting what I was saying. I struggled for words. My brain felt like it was in an enormous deep fog.

I met with that same friend that afternoon and told her I must have gotten some gluten. We tried to figure out what it was. Were the server and cook wrong about the falafels being gluten free? Was there soy sauce on the chicken skewers?

I don’t know.

This is a constant factor of my disease. Every time I go to a restaurant I’m potentially compromising my health. Every time I eat is another chance for either health or sickness.

IMG_6051

I’m getting ready for a friend’s 40th bday party. It’s a 1930s themed party. All the other ladies are flappers. I’ll be reconstructing an already reconstructed slip. The one I’m wearing here. It will be funkier when I’m done with it. I’m going for a show girl look.

I got curious about all the yawning I was doing because it definitely had an “air hunger” sort of feeling to it, and I used to have pretty bad asthma before I was diagnosed with the disease. So I did a little Googling and it turns out that a precursor to anaphylactic shock is persistent yawning.

I’m still trying to understand my body’s reaction to gluten. I did have some stomach discomfort, the sharp knife in my gut. No doubling over in pain. If you would have asked me if I was having stomach pain that day I probably would have said, “Kinda.” On the pain threshold the knife feeling was maybe a 4 or a 5 (I have a crazy high pain tolerance, so it could just be that I didn’t register it as pain or it wasn’t that painful, but I’m not sure). My discomfort was more strong with the breathing issues and muscle cramps in various parts of my body (none of the muscles in my stomach were affected).

A few days earlier I was putting some hair product in my hair, the same hair product I used to use some time ago, that was still on a shelf in my bathroom. I’d run out of my regular hair products and was just using up what I had around the house. I used this hair product once earlier in the week and I had noticed it made my head a bit itchier and my hair looked frizzier, but I thought it was random. So as I was putting a little dollop of this hair goo in my hair, I started to feel a heat rising from my scalp. It was a heat and an itch like I couldn’t believe. It felt like pins and needles in my scalp with a throbbing sensation all over my head.  I grabbed the bottle of hair product off the shelf again and read the ingredients. Down at the bottom of the list, “Wheat paste.”

Shit!

I threw the bottle across the room and started swearing like a sailor. I grabbed a towel and went to my kitchen sink to rewash my hair, trying to get the poison out of it.

I use the word poison, because for me, wheat is poison. It’s pretty much one of THE most poisonous things I can consume or put on my body.

I scrubbed my scalp for 10 or 15 minutes, till it was red, but when I was done, I felt much less itchy.

For some reason, my Celiac reaction to gluten looks more like classic allergic responses. I’m back to the reality of this disease.

So was the food the issue at all? Did I just have a big reaction to the hair product a few day before?

I don’t know.

I have a secret wish. I wish the world was a little more gluten light and that it was obvious which things had gluten in them. I wish I could wash my hair and use hair products and makeup, eat foods, make paper mache, without having to be hyper vigilant about reading every label and double checking everything that I haven’t checked in a while. I wish I could trust servers in restaurants. I wish they were all well informed about their menus.

I wish there were less products with gluten in them. It wouldn’t hurt anyone and it would truly help me and everyone like me who is poisoned when exposed to gluten.

This is one of my biggest wishes.

Will this happen ever or in my lifetime?

I don’t know.

But I hope so.

I’m back to the reality of my situation. I’m always a meal or product away from potential sickness. It’s bullshit, really, but it’s the truth of my life and I’m still learning to accept it. It’s a good thing I’m so strong and have so much support around me to keep me stronger.

IMG_6053I don’t have the time to include the finished dress in this post. I’ll find another way to post it and do that soon.

Next week I’ll have perspective and be feeling better about this, but right now after my recent run-ins with gluten and I don’t even want to have perspective. I’m pissed at gluten. This week I just have to say, “Fuck you, flour. You really challenge my life.”

Sometimes speaking the truth feels good, even when the truth isn’t that awesome.

Is there a truth you might want to speak that is equally unawesome? Do it in the comments or just think about it on your own. Maybe talk to a friend about it. It helps.

Today I weigh 204 lbs. I’ve not been running much recently. It’s too hot and I’m a little wimpier in the heat. I’ve missed a bunch of exercise classes, but I’m still going. I’m still trying to be as healthy as I can.

 

Comments

comments

2 Comments

  1. Posted July 22, 2013 at 12:24 am | #

    Damn you look hot in that outfit! :) I can’t wait to see the finished result. I’m sorry you had such a crappy run-in with gluten and glad you’re feeling better now. The yawning thing is really fascinating to me and struck a chord, a bit of an a-ha moment for me.

    My unawesome truth lately has been self-sabotage. I have a long history with this, but I am working on turning a corner and cutting it out. It is a struggle every day, but I know I can get through it. Someone else in my family is making some big changes so it will be helpful to be on the bandwagon together.

    • Posted July 27, 2013 at 1:24 pm | #

      Thank you, Lea! You are so sweet! Self-sabotage, yes, I’m familiar with that one. It’s way harder in the summer time to stay on track, also around the holidays. I keep reminding myself of that. Hang in there! It will get better soon!