Michelle: First, it's been great getting to know you! Welcome, welcome! Your questions were, What do you think is the hardest part about having a chronic illness? The emotions of it all. I think we could handle our symptoms if they didn't interfere so significantly with our goals and relationships. But as much as I want to get better and am still trying like crazy (we all are!), I am grateful for this experience. It has given me a new perspective on life. And, Has anyone done PT, how did you like it? Did it help? First, I need to ask you what kind of PT can you do regarding your headaches? I get lots of headaches! Would it be vestibular? Vestibular was recommended to me but I never did it. I've done pilates on my own, started from my bed...Helped me get out of bed after a year! That and new medication. =) Sorry you are feeling so sick!
Cheyanne: It's been great getting to know you too, welcome aboard! And this reminds me, I haven't sent you the list of foods that have B-1 yet! That had to be really scary about the issues found with your lungs. I am relieved to hear that the issues were not what you originally thought or that they didn't worsen. I also wanted to say, I've heard of quite a few people developing POTS after Gardisil. May this be a caution to our readers! I'm sorry you got sick after it! There should definitely be a warning regarding it. Especially because you are pressured by the medical community to get it and feel you are doing something positive. Your question was, Do y'all get brainfog and how long does it last? I find that my brainfog is significantly impacted by my sleep. Of course adequate sleep can seem like an impossibility to us! I do believe it is also affected by my diet and vitamins. I get horrible brainfog sometimes where I'll be in a conversation and I will have known what we were talking about in the beginning, but then I forget. My brain fog usually lasts weeks at a time when it's really bad. Lessened is just random times through the days and weeks.
Miranda: I'm glad your mouth is doing better and I sure hope your upper GI went well! You are very welcome for the stuff :). It's interesting how you get tremors like I do. I really think our symptoms are so similar, it's crazy! I have actually been stung by a jelly fish before and it hurts so bad! It was when I was a child, but I still remember, that's for sure! Lol. I hope it gets better! Your question, Do you guys have problems with your blood sugars? Yes, a Doctor told me they thought I have reactive hypoglycemia, but we didn't follow-up with her. But I still get symptoms of it where my sugar seems to drop. I haven't been taking it, but protein has seemed to be doing wonders for me, and when I don't have it...It's not a good situation, I'll say that!
Francesca: Glad you are a new weekly poster :). That is so great that you know both Spanish and ASL, it's my goal to learn both of those! I did take Spanish in highschool but it was on a computer program and I forget most of it! That's so not cool that you get tremors that look like seizures too. Have you had an EEG? Your question, How many of you guys wear medical alert bracelets? I do! Now however, since I am starting to get a better idea of what the bulk of the medical community knows about our illness, I want to update it and put an informational website or something on there. Oh, and your question about the signatures, I made mine on Picnik.com. I just made a new one!
Erin: I don't think you had a question, sorry if I missed it! That's awesome that you made an informational blog solely for POTS/EDS! I know Miranda has something like that, too. Great idea! Also, glad to have you as a regular poster as well!
Logan: I am so happy that you are doing so well! Praise God! Whoo to the Hoo!! I don't think you had a question either, sorry if I missed it!
Tana: You are still missed! And I am glad you had a good Birthday :).
Rhianne: You are home! Welcome back! I hope you get some lovely refreshing rest!
Okay, since answering the questions took a lot of space, I will be brief about how I've been. I got my cystoscopy done and I do believe it helped. Since the day after though, I've not been doing so well. It was this past Monday, and that and a few other factors have really taken it out of me I think. Today I was in my recliner all day!
My question: What is one positive that has come through your illness? For me, it's becoming closer to God and through that, I think I've become a more understanding and compassionate person.
Love ya ladies, Hope you are all doing well and have a great weekend!
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