Mom is taking over the blog today:
I want to thank @Wildboutbirds, Honeybell's, mom for giving me the courage to write this. this is her blog about hidden illnesses: http://honeybell-hoover.blogspot.com/ Hidden illnesses affect how we percieve things, and I believe our twitter friends know when something is wrong. We all have things to deal with, but sometimes it is hard to know what a disease is like if you have never met anyone with it. Please ask me questions about celiac disease and I will be glad to answer them to my ability.
1. The illness I live with is: celiac disease. I was undiagnosed for so long that I have other food sensitivities such as dairy and soy. Celiac disease has also impacted my thyroid function and I have hypothyroidism. Of course, depression often runs with this disease for many reasons. I am also a recovering alcoholic.
2. I was diagnosed with celiac disease in 2006.
3. But I had symptoms since I was a child.
4. The biggest adjustment I’ve had to make is figuring out how to eat in our fast paced culture.
5. Most people assume that all I have to do is not eat bread. AND the big one, that there is medication for this (medications are still in R&D).
6. The hardest part about mornings is trying to find something to eat that is not bread, wheat cereal, oatmeal, or cholesterol containing.
7. My favorite medical TV show is House mainly because he is such a curmudgeon. However, they have had an episode about celiac disease.
8. A gadget I couldn’t live without are silicone cooking utensils.
9. The hardest part about nights is depression, wondering how I can continue to cook my meals when I am elderly, wondering if the food experiment will make me sick, hating myself for being fat but not sure what I can give up to lose weight. Luckily, I have no desire to drink, so that isn’t an issue.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments, I would love to find one, but this is all food modification. There is no magic pill to make me better.
12. If I had to choose between an invisible illness or visible I would choose visible. People can understand a limp.
13. Regarding working and career, it is very difficult as a professional to dine out with colleagues. I have to ask the waiter in detail about food preparation, and I just sound picky. Sometimes after a contamination, I need to sleep for hours. You can’t say to your boss, I need to sleep to help my body recover from a hidden illness. People don’t get it. If you aren’t throwing up, it doesn’t exist.
14. People would be surprised to know that wheat in the forms of flour or gluten is hidden in many foods. My food also has to be produced in a wheat free environment, and most restaurant kitchens are not set up this way. When wheat is accidentally consumed, we call that contamination. Only time and strict adherence to a gluten free diet will heal.
15. The hardest thing to accept about my new reality has been to figure out that no matter how much you change yourself for the better, something will always come up and grab you in the ass to give you a reality check.
16. Something I never thought I could do with my illness is to resist cinnamon rolls.
17. The commercials about my illness- since there are no celiac disease commercials, the depression ones make me annoyed as hell.
18. Something I really miss doing since I was diagnosed is eating a sandwich whenever I want wherever I am.
19. It was really hard to have to give up cheese due to lactose intolerance.
20. A new hobby I have taken up since my diagnosis is changing the type of cookbooks that I read.
21. If I could have one day of feeling normal again I would order a fantastic meal at a 5 star place, no wine though.
22. My illness has taught me that you have to be advocate for yourself with the medical profession. If you don’t tell them in their vocabulary, they are less likely to hear you.
23. Want to know a secret? One thing people say that gets under my skin is, “Oh, you can just have a salad. That’s safe.”
24. But I love it when people find a restaurant that is gluten free friendly especially for me.
25. My favorite motto, scripture, quote that gets me through tough times is from a Steely Dan song:
Any major dude with half a heart surely will tell you my friend
Any minor world that breaks apart falls together again
When the demon is at your door
In the morning it won't be there no more
Any major dude will tell you
26. When someone is diagnosed I’d like to tell them that this disease ain’t for the faint of heart.
27. Something that has surprised me about living with an illness is people don’t care.
28. The nicest thing someone did for me when I wasn’t feeling well was the day my husband made a special trip for a white soda.
29. I’m involved with Invisible Illness Week because, well, I’m a day late, but I needed to get out my feelings.
30. The fact that you read this list makes me feel that you have taken the time to care, and that means the world to me.