Today I spoke with a woman who has had Graves for 5 years. We have somewhat similar personalities and outlook on life so it was really good to talk to her. She is actually a woman on an opposing team in flag football so that's kind of cool! I've played flag football for about, oh, 4 years. She was also once a runner but that is one thing that she has not been able to. She is also a teacher and had to take time off when she was first sick, and then returned to a VP role instead. Here are some major things that I got from our conversation (I forget tons but here's what sticks with me):
*No one understands Graves, they just think you have a fast metabolism. Wrong.
*Many people make the comment, `Oh, I wish I had that!' or `I wish I had it for a week!'. Dudes, you don't want it. The weight comes back. The weight is the least of your worries. Her weight also fluctuates by about 7 lbs. My dental hygienist made that comment yesterday...`Oh, I wish I had a touch of it!'. GRRRRRR.
*She lost her dad (I lost my mom) before getting Graves
*We have the same endocrinologist even though we live in totally different cities and we both love our endocrinologist!
*She said that one of the greatest aids to her is her diet. She is on a wheat and dairy free diet. Eliminated caffeine, alcohol, and refined sugar. Many supplements too which I will be figuring out in the next week. I def. need some probiotics for all the lovely woman problems I've got from this and some vit B complexes etc. Need to see a naturopath.
*She said that she really has to watch out for stress in her life or the symptoms come back fast...same here. She has asthma which results in asthma attacks when stressed, I `just' get anxiety attacks.
*PEOPLE DO NOT UNDERSTAND/BELIEVE THAT YOU ARE SICK BECAUSE YOU CAN FUNCTION ALMOST 100% NORMALLLY
*She has to write everything down now as she is so forgetful. I am too. Lists with timelines and calendars are packed. I am very `slow'.
*She says she believes I will be able to bike and hike again. Maybe not running though. Okay. I feel this deep desire to hike with my family. Imagine not being able to do something that is, and always has been, such a big part of your life. Ya.
I have to tell you, I'm nervous about changing my diet FOR LIFE. I know I can't have alcohol or caffeine and that's okay. Dairy, I've done before, I will do it again. There are many soy products out there...just pricier which drives me bonkers. Sugar, I can do it. I know it won't kill me to have a cookie once in a while and I will let myself. Wheat, oh man, I don't know. It's hard because it's not just me, it's my family.
There is another huge issue out there, and that is pregnancy. You can get pregnant with it but I could not be on the medication I am on with it. You would need to see a specialist throughout. Symptoms could be aggravated and it could return with a vengeance afterwards. This is all what I understand right now. Gary and I have been talking about this a lot (even before we found out I had Graves). We have always wanted to adopt (with varying levels of thinking about it) and now, we have the `push' we need:)
Okay, that's where I am today.
Hey Louise, I've been following your story from afar. Your diet sounds very similar to how Mike and I eat as well as Shannon. It can be tough, but I know that food makes a huge difference in how I feel. Hang in there! Let me know if you want some cookbook suggestions :)
ReplyDeleteMelanie
So great to be able to connect with someone in a very similar situation! Thanks for educating us ignorants about Graves so we won't make those annoying comments to anyone in the future.
ReplyDeleteWow, those are BIG diet changes! I've made most of them- except dairy- and it is hard but at least I have a light at the end of the tunnel for wheat since Joshua will likely grow out of his sensitivity. And if he doesn't then I know I'll be able to get back into it when I finish breastfeeding him.
I am interested to know more about how diet impacts your disease.
Isn't it funny how gluten and dairy intolerance seems to be almost an epidemic? My strong suspicion is that it is connected to genetic modification, pesticides/hormones/antibiotics, and processing. I would be so curious to know if raw organic milk or unmodified organic hand ground wheat produces the same problems.
Louise...thinking of you and Gary and the boys and praying for strength and courage on this journey.
ReplyDeleteMelanie, not sure if you would check this comment but I have talked with Shannon about it (and she made me some lovely meals!) Do you have a thyroid problem too? Hmmm..maybe you are still on school email:) I will check!
ReplyDeleteJust thinking about you lots!
ReplyDeleteWhat a roller coaster you are on, Louise. I'm glad you are starting this blog. I really didn't know a ton about Graves but I am learning lots. Over time you will find a diet that works for you. At least that's something you have the ability to affect and through it, improve your symptoms. Will pray for you for wisdom.
ReplyDeleteAnd for the record, I LOVE the idea of you guys adopting!