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1. • CommentAuthorvicki todd mcclellan
   • CommentTimeAug 22nd 2009 edited

    # 1Report Post
   My whole entire family has been affected my all kinds of autoimmune illnesses. From my grandmother to my 2nd and 3rd cousins.
   
   It makes everyone miserable.....not just the ones with the illness but those who are healthy as well.
   
   In alot of cases those with autoimmune look healthy. So, those people around them who may not fully understand the nature of each particular illness think that they are lazy or crazy. Even doctors treat you like you are a hypochondriac. All of this makes those with autoimmune feel like they are nuts. Families and friends do not understand why you can't sleep, or why you are so tired. You hear things like "if you would just do this or do that..." but all that does it make you feel worse because you know you have very little control over this illness that has taken over your WHOLE LIFE!! You want to go for a walk, but you can't......just cleaning the house is a major feat. If you are working you feel lucky to get through your day. But when you get home all you want to do is sleep but your family doesn't understand why you can't mow the yard, or fix dinner, or do the laundry. But, what if you lose your job because you have missed too much time because of your illness? Then what? You beat yourself up because you failed...and just try getting disability!! Nope....because autoimmune illnesses are not "well-known" and hard to prove.
   
   But, even those with supportive families get tired, weary and burned out. These illnesses just don't go away. They are chronic, long lasting,and changing. Usually autoimmune sufferers don't have just one condition, alot have several. Some are suffereing WITHOUT A TRUE DIAGNOSIS!!! That means no real treatment. And good luck finding a doctor...any doctor to help you. Even specialists ca't help you. Alot of my family has done their own research something their own physicians are unwilling to do! How mixed up is that!!!
   
   Tell me...just what are we suppose to do??? I am so frustrated because I have seen this illness destroy my family!!! Tears, arguments and depression seem to be a part of this illness as well. Even as I am researchng this in my own family, alot of them are unwilling to share it even with me because they have spent yeaars in fighting it alone thinking it is better to try and cover it up than to deal with it.
   
   We need help! We need support! We need research and good health care....not just bandaids over the symptoms.
   
   I am desperate.....
   
   Vicki McClellan
2. • CommentAuthoralcyon73
   • CommentTimeAug 23rd 2009

    # 2Report Post
   Vicki
   
   Reading your story gave me cause to pause and reflect on the impact that autoimmunity has on individuals and families. I'm the only member of my family that has an autoimmune disorder (I have essential cryoglobulinemia). My family has been caring and supportive, but since most of my family lives in another state , they don't have to face the reality of my condition on a day to day basis (I count that as a blessing).
   
   Most of my friends have been understanding and supportive, but there have been issues. I've been treated like an invalid at times (I'm not crippled), and on another occasion I was told that autoimmunity was not real that my symptoms were merely hypochondria, because I did not look sick. On top of that there is the usual bad medical advice from well-meaning people...that gets ignored...
   
   I'm neither an invalid, nor am I a hypochondriac. I have a valid medical diagnosis and I have scars on my body from the vasculitis caused by my disorder. When the disease is active , I can be all but crippled, but I stay in motion as much as I can. I continue to conduct my life because I refuse to be beaten by this as long as I am able.
   
   Autoimmunity is rare, and some autoimmune disorders have bizarre or obscure symptoms that do not externalize well, thus we don't always look "sick". People are ignorant of the facts and they act accordingly, which leaves us to deal with their ignorance. It's an unfortunate situation that can only be dealt with by educating the ignorant and continuing forward as best we can.
   
   I can understand that some people want to ignore autoimmunity and pretend that it is not there or is not real. Sometimes when faced with an insurmountable problem people go into a state of denial. Nonetheless, autoimmunity is very real and in many cases, ignoring the fact can prove detrimental, even fatal. Autoimmunity is NOT something that should be ignored or swept under the proverbial family rug. The cost of denial is just too high.
   We need to find the courage to face up to autoimmunity so that we can seek out the best possible care for our condition(s), and it would be a great help to us if those around us would be a little more aware that some of us do indeed have a real struggle on our hands and could use a little moral support.
   
   When I was first diagnosed with autoimmunity, the reality that I had a condition that is both permanent and life threatening began to sink in. I set out to educate myself as best I could. I started reading medical journals and research papers on essential cryoglobulinemia. One fact that came to the surface is that there is no cure, but there is treatment, and that without treatment, I was going to be very sick, and possibly die. Generically, autoimmunity is treated with the use of cortical steroids, immunosuppresants, and sometimes with biological agents like rituximab. Extreme cases are sometimes treated with plasmapheresis. There is some hope for a cure, but it does not look like it will be any time soon. Stem cell transplants have apparently cured a few people, but for now, this is a risky experimental procedure that is available to just a few people. This is likely to be something that is decades away from being available.
   
   Another fact that emerged when researching my conditon was that there was very little research being done. Obscure illnesses don't get funding for research. Because there is no research, there is no cure, because there is no cure I have a 50% probability of dying in the next 10 years from complications related to either cryoglobulinemia or treatment for my condition.
   
   A cure is desperately needed. We have the technology, and the ability to do it, but the funding for the research is simply not there. This has to change.
   
   
   Glen
3. • CommentAuthorEllie
   • CommentTimeAug 23rd 2009

    # 3Report Post
   Dear Vicki & Glenn and everyone else who visits this site:
   
   You are so right about NO Research. That is why it is so important to get support for HR 2084.
   Write your US Reps, ask your friends, family & co-workers to write.
   This bill started out with only 2 co-sponsors - it now has 11 but we need more.
   
   This bill will help fund the research..
   
   Best to all,
   Ellie
4. • CommentAuthorvicki todd mcclellan
   • CommentTimeSep 2nd 2009

    # 4Report Post
   Just wanted to let you know that my brother is on his way to the Cleveland Clinic.
5. • CommentAuthorMrsBias
   • CommentTimeSep 12th 2009

    # 5Report Post
   Reading your story sounds like me looking in the mirror and speaking out loud. I have sarcoidosis....and I am often told I look good. I guess it's true a person really judge rom the outside. Beacuse in the inside I am miserable. I have no energy...yet tired of being in bed. All the doctor visists seem useless...I leave feeling no better or even knowing no better. Makes me feel like I a whinning...and my family try to be understanding....I do give them credit for that...but sometimes that's just not enough.Like...they understand I don't feel good and that I amy not cook or clean....but along with their understanding they don't do it either...then I wlk around the house feeling soory for myself and irratable because I don't like a dirty house or lazy people.
   I still haven't got control of my mood swings....they say misery loves company...I am starting to disagree...because I am miserable and majority of the time I DON'T want no company. All I know that this spot I am in with my health is very lonely....and as for disability...yeah right...you have a better chance at getting it for being crazy...than actually sick. Now that's just sad. I have sarcoidosis in my lungs, lymph nodes,skin and joints, asthma...being treated for depression and anxiety and was denied. And currently having to get some test ran in a couple of days because I have started having problems with my blood pressure and heart.
   Another thing...I just bet if they came up with a survey for individuals with auto immunne problems vs. cancer vs. herpes vs.menstrual cramps and all the other commercials I see from day to day....then maybe they would give us more attention. How about a commercial to raise awareness AMERICA!!!!!!!!!!!
6. • CommentAuthorvicki todd mcclellan
   • CommentTimeSep 14th 2009

    # 6Report Post
   YES......I agree......no research because the pharmaceutical companies wont make lots of money.......HELP US PLEASE...SOMEONE NEEDS TO DO SOMETHING...NOW....BEFORE IT IS TOO LATE.....
7. • CommentAuthoralcyon73
   • CommentTimeSep 14th 2009

    # 7Report Post
   I whole heartedly agree. We have treatment for autoimmunity, but we desperately need a cure. research needs to be funded. I do believe that we have the technology and we have the people with the know-how, but the funding for the research needs to be there. Far too many people are suffering and dying for autoimmunity to be ignored.
   
   Glen
8. • CommentAuthorbr0knwings
   • CommentTimeNov 2nd 2009

    # 8Report Post
   Hi all. Vicki Todd McClellan and Mrs. Bias, Please don't give up. Keep going back to the doctor until you find the right one. Get referrals to a Rheumatologist so you can get the right diagnosis. Also to Pain management. Also seek counseling for stress and anxiety. There is nothing to be ashamed of, seeing a counselor. There is so much stress on yourself, and your family, living with hidden illnesses. As for disability, it can, and will be approved if you keep on trying. With all the medical problems, including the depression and anxiety that goes along with it all, fibromyalgia and all the other "hidden" illnesses are approved all the time. You just have to keep going back to your doctors. It all has to be documented. Don't be discouraged. It is always denied the first time. After being denied, you can go to a social security attorney for help. They can't charge you up front. They take payment out of the money you get in back payments, and the amount is limited that they can charge. Please get help. Don't let these diseases take anything else from you. Start putting your lives back together, and don't worry about the people that tell you that "you don't LOOK SICK". Noone with these autoimmune diseases does. That's the cruel joke it plays on us all. It strikes when we are not looking and stays hidden, where we can't see it.
9. • CommentAuthorhazelsoldest
   • CommentTimeNov 3rd 2009

    # 9Report Post
   I think not looking sick is why people don't understand, because we look well groomed or attractive then of course, we aren't "sick". Went to see my gastro last week and in answer to his questions I began to relate the newest problems with my digestive system. He looked at me and said," thats hard to hear, you look really good." I think for a time he forgot that he is the one who dx'd collagenous colitis !
10. • CommentAuthoralcyon73
    • CommentTimeNov 4th 2009

     # 10Report Post
    During my last flareup, I was so miserable with arthralgia, I literally had a friend say to me; "but you don't look sick". After the doc put me on a high dose prednisone taper to force remission again, THEN I bloated up and now I look "sick", but I feel okay.
    
    Glen