Dysautonomia; Celiac Disease; hypoglycemia; Rare Disease Day

March 1st, 2013 by Carrie, the Just Mildly Medicated gal

This Guest Blog Post is from a teenager in my very own town. Our coming into contact was one of those odd connections that a few minutes difference or one conversation change and we’d of never known about each other.
After a doctors appointment I called my husband to let him know how it went. He was getting ready to go into a meeting but was able to get the update. While in the meeting he mentioned to a colleague that I had been diagnosed with Dysautonomia, something called POTS. This colleague couldn’t believe it, she told my husband how her daughter has POTS (postural orthostatic tachycardia syndrome heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing).
Thanks so much for sharing on Just Mildly Medicated!
1. The illness I live with is: Dysautonomia ,with digestive problems, heat and exercise intolerance,crazy heart beat and gerd.  I have a cranky pancreas (some times reactive hypoglycemia, sometimes diabetics/pre- diabetics, sometimes chronic hypoglycemia). I am learning “disability not other wise specified” I also have food allergy’s and intolerance as well as celiac disease.
2. I was diagnosed with it in the year: 2011 
3. But I had symptoms since: 2010, some I’ve always had. 2012 for food allergies
4. The biggest adjustment I have had to make is: Not being able to go, go, go . I often cant keep appointments because I never know if i will feel good or not.  Practicing extreme measures to avoid cross contamination of my food. If I touch something that has been touched by food that is not safe for me to eat then touch my food, and eat it i will get very sick. Being prepared to treat hypoglycemia when not at the house. 
6. The hardest part about mornings: Getting motivated to face the day, especially fixing breakfast. And the indigestion and bed taste (gerd) in my mouth I often wake with . 
7. My favorite medical TV show is: I don’t watch medical TV, but does Dr. Pol count. 

8. A gadget I couldn’t live without is: blood glucose meter. And for my sanity (or lack of ) a lap top. 
9. The hardest part about nights: Getting my blood sugar stabilized to go to sleep. 
10. Each day I take: no pills
11. Regarding alternative treatments: I prefer the normal ones (like eating salt) over pills, but roll my eyes at the ones that say things like “we can cure your diabetes with  this herb and you can eat junk food”. 
12. If I had to choose between an invisible illness or visible I would choose: invisible. On a good day, it can just be a good day with minimal time spent on my illness, not constant stares and pity. 
13. Regarding working and career: I’m not old enough to work ,but I’m not looking forward to that when I am of age. I can barely get to a doctor appointment much less act fine for many hours a day.
14. People would be surprised to know: How much goes into eating or an outing. 
15. The hardest thing to accept about my new reality has been: Not doing a hole lot to avoid over doing it. 
16. Something I never thought I could do with my illness that I did was: There is nothing I have done I didn’t think I could do. 
17. The commercials about my illness: I haven’t seen any. 
18. Something I really miss doing since I was diagnosed is: Well a official diagnosis didn’t change what I can and can not do . What I do miss is being able to do a bunch in one day, and  eat with no worry of allergens. 
19. It was really hard to have to give up: Being able to do what ever I want like show horses all day in the heat, do strenuous horse chores (even more when its hot out). 
20. A new hobby I have taken up since my diagnosis is: Being evolved in the illness online community, not actually posting but reading others. 
21. My illness has taught me: Not just my illness but events tied to it, have taught me a lot of compassion. Never judge someone, you never know what they are going though.
22. It bothers me when people say: When doctors, or healthy people discount what I’m saying. The doctor who doesn’t care if that medicine is making you worse, “it should help”, or you seem fine. “Is it really necessary to test you blood sugar that much ?”  Yes, I go very low with no symptoms. If I don’t test to find out it could get really bad. 
23. But I love it when people: Are supportive, and allow me to take my mind off it. Or show genuine concern and sincerity but don’t quiz me on it. 

24. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. 
26. When someone is diagnosed I’d like to tell them: Mine is that same as Just Mildly Medicated, you will find a new normal . 
27. Something that has surprised me about living with an illness is: I got used to it. Not as well as some people, when I feel bad I still can’t function but its not as bad now. 
28. The nicest thing someone did for me when I wasn’t feeling well was: Just sit with me, I didn’t feel well enough to talk but just keep me company. Also take me on a car ride when I was sad and kind of depressed.
29. I’m involved with Rare Disease Day because: Well I wouldn’t have been If not asked , I wasn’t aware it existed, I only knew of world diabetes. Now that I  know I wanted to participate and spread awareness for Celiac Disease, food allergy’s, Dysautonomia and any blood sugar problem. 
30. The fact that you are reading this list makes me feel : Like I have helped spread awareness for the conditions listed above. And a little less of a lurker.
To see a little more about what your Autonomic Nervous System does and all of the things that can be impacted when it doesn’t function properly you can see the image below.
Thank you for always checking in on Just Mildly Medicated

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3 Responses

  1. in pursuit says:

    man this hurts my hear. it’s hard enough when you see adults go through these things but to hear about children or young adults is heartbreaking. I think of all the times my friends and I hung out at yogurt shops or stopped at a drive thru on the way home from school. I think about hanging at a friend’s how and having her parents make us snacks or the times my dad had a BBQ for my friends. It’s sad to think that these simple, common, normal tasks are difficult for someone who should just be living life.

    i know there are a ton of Celiac-friendly options out there. Although I haven’t been diagnosed with it I mostly eat that way because of uncomfortable digestive issues- but I’m a grown up. Doing it as a kid can’t be easy. I am humbled by her maturity and honored to have read her story. Thank you for giving her a platform from which she can speak Carrie.

  2. Lindsay says:

    Wonderful post. I agree with the above comment – it’s difficult enough to have to deal with illness as an adult, I can’t imagine as a teenager. But this teenager handles her illnesses with such grace and maturity. Thank you for sharing her story.

  3. camey says:

    My 8 year old was diagnosed in June with Celiac but while her numbers have improved her symptoms have not. She was just diagnosed yesterday with dysautonomia. Any advice for me on how to help her. She has lots of crazy symptoms from dizziness, seeing spots, chronic stomach pain etc.

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