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lalalisa

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Posts posted by lalalisa

  4. Rarely Get Sick (colds, Flu, Etc.)

    in Dysautonomia Discussion

    Posted

    Hello,

    I was just wondering if anyone else is similar to me in that I very rarely get colds or flu viruses? Ever since I originally got sick 5 years ago the only frequent infections I get are sinus infections and these have been attributed to my severe allergies.

    I guess I just find it interesting that despite being sick with POTS I rarely get a cold, etc. Does anyone else experience this? Why do you think this is?

    I seem to think that it's because I sleep lots, exercise regularly, stay well hydrated, eat healthily, and have just slowed down because POTS has forced me to do these things in order to survive.

    Any thoughts?

    Lisa

  6. My Ss Hearing Is Tomorrow...

    in Dysautonomia Discussion

    Posted

    Hello everyone,

    Thanks SO much for your advice and prayers! I felt as if the Lord kept me calm and I wasn't really nervous --- I was really thankful!

    Things seemed to go well. I should find out within 2-8 weeks now. I'll let you know what they say. I did have a lawyer representing me and she helped ask questions and get me talking which was good.

    Now I'm just trying not to think too much about what I said because I keep thinking of the "shoulda coulda woulda's" if I could say things again. :) You know, you just think of things later when you're not on the spot!?

    Thanks again - you guys are great!!

    Lisa

  7. Dr. Recommends Chiari Surgery

    in Dysautonomia Discussion

    Posted

    Angela,

    Hello! I just wanted to write and let you know that we're here for you. I'm sure it must be really difficult having 2 specialists telling you 2 completely different things about your health! WOW!!

    It sounds like you need a lot of wisdom! Thanks for keeping us up to date about everything.

    Take care and I hope you find some answers!

    Lisa

  8. My Ss Hearing Is Tomorrow...

    in Dysautonomia Discussion

    Posted

    Hello,

    I've been denied for Social Security Insurance benefits twice now. I've appealed and after 2 years of waiting my hearing is actually tomorrow (Thursday) at 2:30. I am getting fairly nervous and would love any advice. If you could tell me what I should expect that would be great.

    I have hired a lawyer but she says I'll be doing a lot of talking tomorrow. I definitely can't work but I'm still nervous because I don't like to speak in front of people I don't know.

    Thanks!

    Lisa

  9. Exercise

    in Dysautonomia Discussion

    Posted

    Hello,

    I've been swimming for about 1 and 1/2 years now and my muscles are much stronger because of it. (Dr Grubb told me that i had to exercise and swimming sounded like the most logical option) I shake a lot less and have also noticed that I even have less cognitive symptoms (brain fog is less frequent/intense). I started out with a kickboard swimming just 1 lap and now I'm up to 12 laps. I mostly do the back stroke and also kick with the kick board which really helps strengthen leg muscles.

    I hope your son can find something that helps. Exercise is SO difficult...and it's important to find that balance and to listen to your body so you know when you can't push too hard.

    Take care,

    Lisa

  10. Midodrine Update

    in Dysautonomia Discussion

    Posted

    Hello,

    I'm glad to hear that you are having good results from Midodrine. That's wonderful!

    I'm also on it and could barely leave the house without it. After being on it for 5 years now i'm used to the chills/tingles and I even appreciate the fact that I know it's "kicking in" when I feel goosebumps. Although I do get goosebumps on my face and that feels really weird!

    Thanks for letting us know how you're doing. :rolleyes:

    Lisa

  15. 8 Years Have Passed

    in Dysautonomia Discussion

    Posted

    Ernie,

    Thanks for posting about your 8 year anniversary. I'm sure this is such a difficult time for you.

    I too am thankful for your life and presence on this forum. I appreciate your consistency and care. It sounds like you are really a blessing to your family as well!! That's so neat that they have you to lean on and be there advocate during difficult times.

    We appreciate and are here for you! :D

    Lisa

  16. Heat Intolerance

    in Dysautonomia Discussion

    Posted

    Hello,

    I just want to know what a "dungbettle" is!? :) I've been sitting here smiling for about 5 minutes after just reading that word. You guys are so funny!

    I also get overheated in the stores, etc these days. I'm all about wearing layers because I can easily get too cold as well.

    Lisa

  21. Allergy Testing Complete

    in Dysautonomia Discussion

    Posted

    Hello,

    I recently posted because I was trying to decide about going off of Toprol XL in order to look into getting allergy testing / shots. Well, I went for it! Despite sinus surgery I cannot get rid of my sinus infections so my ENT said we should look into allergy shots.

    I ended up being SO allergic to practically everything they tested me for (weeds, trees, animals, molds, dust, etc) that the nurse kept saying, "Oh Wow, how do you even live!" She even called the dr. in to "admire" my welts!

    The good news is (and i know you guys understand this) is that this is something we can actually treat, yay! I'm hoping to start my shots next week and I'm actually looking forward to them!

    Lisa

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