Introduction, and Some Complaining. We Deserve It.

Options
Hi, I am 18, a freshman in college, and am engaged to be married first week in January of next year. Of course with a wedding coming up I want to loose weight to look better in my dress and in pictures, but also having PTC does not help. I have battled with it for over a year and it's like a constant battle that I can never seem to win. When I start doing better it comes back with a vengance even worse.
I am on the highest dosage of Diamox allowed and the side effects of that are a ***** in and of themselves. It's so hard to explain to people whats wrong and why some days I just don't want to even move because if you simple say "I have a headache" no one thinks that your head feels like its being squeezed by an anaconda after being beat with a hammer several times. Or that simply opening your eyes can make it so much worse.
I have had about 6 lumbar punctures now and am having my 7th this Thursday. Lumbar punctures let alone are horrible but the doctors always seem to have a hard time giving them to me because I have disk problems in my lower back. Once, after about 10 tries the guy finally gave up and said he would have to find someone else to do it or do it under sedation because he could tell I couldn't take it anymore. Lumbar punctures almost never work well for me, one time I even ended up back in the hospital 2-3 times because I had a leak and had to wait 2 days to get a blood patch and I couldn't move without immense pain.
My main struggle with loosing weight seems to be with working out. Anytime my heart rate increases even the slightest I get a extreme headache. Obviously when you exercise you heart rate is going to go up so I have refrained from it. Loosing weight by dieting alone is really hard for me, as I'm sure it is for everyone. Especially when you live on a college campus and most of your eating options aren't exactly the best for you.
Sorry for my very lengthy complaint but I have never been able to express how I feel with anyone who will actually understand it. I always try to remember that so many people have it worse, whether they have had a worse time with this condition or have a much worse condition that could threaten their life. Thanks for letting me vent and complain and whine. I know you all deal with the same stuff, probably even worse than me. I would love to hear others experiences and if others have the same difficulties I do.

Replies

  • ChrisWithATa
    ChrisWithATa Posts: 6 Member
    Options
    That is what we are here for! I want this to be a safe place where we can vent and not worry about judgement from others. :)
    First off, congrats on your engagement! What are you going to school for if you don't mind me asking?
    I've only had one lumbar puncture and it was under xray because they had a hard time with me too so I can't even imagine having that many with those issues.
    I haven't been to the gym in over a year because every time I went I would just get one of the curled up in a ball crying for hours headaches after 15 minutes so I can understand how you feel.
    College campus food is the worst, I remember even going to the campus "grocery" and there was nothing but canned food. I did the stereotypical ramen noodle diet for longer than I ever wanted. You're planning a wedding so you're probably skimping and saving enough as it is!
    Take care and I hope you see some relief soon.
    ~Christa
  • kenzbenz49
    Options
    Thanks for the congratulations!
    I am in school at UNCG for Pre-Nursing. It is a hard major so far and apparently it only gets harder haha.
    Yea college campus food is pretty bad. The cafeteria is gross and anything else is fast food, the only fast food that is healthy is a salad place and it gets very expensive. I actually love ramen noodles but they don't give me very much protein and I discovered I had a vitamin b-12 deficiency so I need all the protein and eggs and stuff that I can get.
    Thanks again!