Blog Comments

  1. wrightrs's Avatar
    I think the holidays are stressful for people with lupus and vacations too. I read about it all the time in Lupus Now and Arthritis Today. I'm still stressed from my vacation.

  2. jrkgaspar's Avatar
    I know how you feel. It is so frustrating to get so tired by doing so little. I have had lupus for 22 years and only lately I have had a lot more issues with fatigue and struggling with small things. Hang in there. Just look to the positive.
  3. wrightrs's Avatar
    Oh Beckey I'm so sorry such bad things happened to you. I have been a victim of two crime also. But not as bad as that. It's always in the back of your mind. That's why I wish I had another dog. I'm so glad you have your dogs so you won't feel as alone.
  4. rob's Avatar
    Hey there Beckey,

    Lupus isn't my only diagnosis either. One year ago I learned that I also have MS. Two autoimmune diseases for the price of one, what a deal (not).

    You know, people seem to think they know so much about us by the way we look. For you, it's weight. For me, I get all sorts of grief because I DON'T look sick. I'm rather tall, and have always been in good shape, and people look at me like "what the hell is his problem, he's not really sick". If they only knew the turmoil that goes on inside. Brain fog, nerve damage, joint pain, it's all there.

    There is no such thing as a textbook case with Lupus. It's effects are as individual as the person who has them. For a Dr. to blame your problems on weight, is unprofessional, and a total cop-out. Don't let them get to you. You know yourself, and you know that while dropping a few pounds might not be a bad thing, those extra pounds are not the cause of your problems. You're not looking for attention. You are looking for answers, and a Dr./Rheumo who will do their damn job and help you. Anyway, this blog entry really got my attention, because I know what you are going through.

    I hope you are having a better day today. I enjoy reading your blog, thanks for sharing.

    Rob
  5. Angel Oliver's Avatar
    Hi Beckey,

    Dont feel guilty its understandable why you are as we all have at some point.Its hard not to be able to do what we used to do...but remember you are sick.In time once they find out what is actually wrong with you....meds will help you. I too was diagnosed with Lupus then they said its not and now say i have M.E.I am not convinced and am still fighting for them to listen to me....so they can do further tests so i feel at ease and know for sure.
    Now, your panics.Its so understanderable why you panic, being so unsure of whats happening to you. The only thing you can do is relaxation,which is so difficult when you are so distressed,but it can work. Breathing is the first thing.This will help.Take a deep breath in through your nose and hold it for 5 seconds.Then breath out through your mouth for 5 seconds.Do this for 5 full minutes.You feel its not working....but its actually slowing your heart rate down without you knowing it.You will feel a bit easier after.This is why you get chest pains. Id also advise you to just let your doctor know...get a check up.
    If you look on Louris Lounge...add a thread there too...letting people know this situation....about you.More people will reply then you see as not many people look in the blog section.
    You keep strong and i hope you get a diagnosis very soon.We are all here to help you until you do.We understand how scary it all is and will help you. Message me or Jeanette(Lucky7) anytime. Sending you gentle hugs.Oh and what a fab husband you have.Listen to him,let him help.In time you will get meds to help you and you can cook him a meal.Just you rest until then my friend.lots of love..Angel.xxxxxx
    Updated 05-09-2009 at 12:54 PM by Angel Oliver
  6. lucky7's Avatar
    AWWW, Hi Beckey! Sorry you're having to deal with this. I is difficult and i understand you feel guilt. Just remember though, it isnt your fault and just like other changes in life, its something to adjust too thats all. The power of the mind is AMAZING, so when you're having those "panicked moments" or those "guilty moments" you NEED to tell YOURSELF "i will control whats in my power to control, and whats not in my control i will learn to deal with it". I know its hard some days more than others but please remember your wonderful husband is THERE FOR YOU and WE are HERE FOR YOU as well. A support system is a GREAT thing to have throughthis. Educate yourself more about your illness and know that others are going through it too and we understand it as well. Adjustments will ahve to be made but as time passes it will get better. Gentle hugs to youXXXXXXXX