Saturday, November 5, 2011

Don't minimize my disease

The LFA (Lupus Foundation of America) states on their website  "With good medical care, most people with lupus can lead a full life."  Ummmm, I beg to differ!!!  I have sent the LFA e-mails, I have no clue how many or if I only sent one but complained to people on my DS (daily strength, lupus) support group.  They have changed their website since I complained via e-mail, but only due to the new drug Benlysta coming out.  They did not change the statement about us leading a full life, however I think it used to say we could live active full lives before.  Don't minimize my debilitating illness or give others ammo to use when explaining to me that the LFA states I can live a "full life"!!!!  Would they like to live one day like me or like so many others I know with lupus.  See how full our lives are???  My life is full with love and many blessings but I do not in any way lead a full life.  I could not work, clean my house most of the time, cook much, play with my children outside, go out to dinner much, socialize (not often) and I love to be with friends, traveling is hard entire vacations have been spent with me in bed, so sick and wishing for a brief coma.  I cannot make plans, or sign up for classes, or help out in school or with a field trip ( all things that I used to do and love, I adore children).  I cannot commit to anything because my body hates me and cares not about plans or the craving to do things social and fun. NOPE!!!  But I live a full life, does a full life in bed count, due to the internet??  I hear from people all of the time that they know someone in remission another thing the LFA has wrong on their website.  Studies have concluded we don not usually have true remissions just times when our disease can become more quite, we are still sick on medication.  If we go off of certain medications our changes of having severe organ threatening lupus is more.  A remission is when your symptoms go away and all medications are stopped, most people are a) too sick to stop meds b) it is too dangerous to stop meds, c) as soon as the med is tapered a bit all the symptoms come back!!!!  No, I beg to differ remission is hardly the case, I wish, but the stats on having one in lupus is low and I will find these studies again!!  I hate when people act like b/c they know someone or knows someone that knows someone with lupus, that if they had it themselves they would be fine.  Like this disease is about something I am doing wrong or not doing!  Live in my shoes one day sister (because it is ALWAYS women who make me feel like shit, men usually don't say much but feel bad and say things like I'm sorry, who knew men were the ones with proper disease etiquette) and you would be begging for your life back.  Then I have people who think I only have days to live and wish they could take my disease away, because either they have read other more accurate websites or they know someone that died with lupus.  These people are usually very sweet and well meaning.  Then of course there are people that are just kind and caring and well meaning.  If you want accurate information on lupus that does not minimize our disease go to 
The Mayo Clinic does not minimize our disease and doesn't use the word remission while on the lupus subject.  Good for them for keep up on the latest studies when having a website dedicated to lupus.  Shame on the LFA for not knowing enough about the only disease they discuss.  I told them to go on the Mayo Clinic website to get proper information. HEHE!!!  I am not against the LFA I just think they need to re educate themselves on the newest studies and not minimize our disease, that is all I'm saying.  Their site has gotten a tad better though but still not up to the Mayo's standards!  The LFA does wonderful things for us lupies  so don't stop contributing.  Here are some other wonderful Lupus organizations; Alliance for Lupus Research  Lupus Research Institute  S.L.E. Lupus Foundation 

1 comment:

  1. So grateful and thank you so much! I needed to read something like this today ... as I have had fibro for years and as of 3 years ago, Lupus was added to the diagnosis mix. Today is especially hard since I have a friend who has been in my life for years and claims to care and understand my issues. I am always there for her when she needs a shoulder to cry on... yet when I have to cancel plans for socially getting together, she doesn't even respond anymore. she gets very angry and pouts while I feel like Crap!!! I apologize and feel so let down and sad about disappointing her. It's so hard to make plans for fun...just as you describe, I woke up yesterday and literally felt like my body had the full blown Flu and it hates me! Lupus won last night and even though I apologized to my friend, offered to try for something to do on a better day, she didn't even respond at all, not one word. I am so hurt. thank you for writing, it's great to find support. I don't know how to handle this friend. WE ARE BOTH SINGLE MOMS AND SHE IS ABLE TO DO ALL THE THINGS I USED TO DO, SHE WORKS OUT ALL THE TIME, HAS TWO KIDS AND WORKS FULL TIME. I ALSO HAVE TWO KIDS. WORK FULL TIME, JUST STRUGGLE TO MAKE IT THROUGH EACH DAY AND STRUGGLE TO EXERCISE AT ALL NOW. :( PLEASE HELP.