Tuesday, October 30, 2012

Advocate or Ignorant?

I always think of the things that people say to me out of ignorance of my disease and I really can't blame them.  I too, was ignorant until this disease took over my body, but I've decided to become an advocate for myself and others that are suffering. 

-50 MILLION AMERICANS suffer from autoimmune diseases
-Can you name an autoimmune disease?  Only 17% of folks can.
-Did you know that Type 1 diabetes is an autoimmune disease?  I would say you know about diabetes but didn't know it was an autoimmune.
-autoimmune diseases are conditions in which the body's own immune system can (among other things) cause damage to the skin, joints, and internal organs.  The body actually attacks it's own cells.  In other words the body kills itself from the inside.
-they run in families/are hereditary
-over 75% of those affected are WOMEN
-it is possible to have more than 1 autoimmune disease at the same time and the symptoms are often similar which makes it difficult to diagnose
-autoimmune diseases are a leading cause of disability and death
-THERE IS NO CURE!

I have ankylosing spondylitis one of the over 80 types of auto-immune diseases.  There are more people with spondylitis than Lou Gehrigs disease, cystic fibrosis and multiple sclerosis COMBINED!  I bet you've heard of those, but not spondylitis.  Why?  I was one so I don't know why.  I just know it's what I have--I know that every single day...EVERY SINGLE DAY...I'm dealing with-pain, fatigue, medications that are HORRIBLE.  My next two months will be full of all of that plus epidural spinal injections and shoulder surgery to remove about an inch of bone so that, hopefully, we can spare my rotator cuff.  I know that my doctor told me, we'll do what we can, but I can't make you pain free--this is life for me.  He can't stop the disease, but he can make it where I can get a glass out of the cabinet.  Yea, a glass.

I wonder why there isn't knowledge of ankylosing spondylitis.  It's an autoimmune arthritis.  So when we get lumped into the "arthritis" family I think that's when ignorance comes in to play.  Autoimmune arthritis is NOT the same as "arthritis".  Osteoarthritis is probably what everyone understands--it's degeneration of the joints and does not have additional symptoms.  When I say, I have narrowing of the spine--and folks reply, oh yea, I have that too--umm no you don't, is what my mind says.  My spine is slowly fusing together because of a the disease.  For those of us with ankylosing spondylitis, I think it's important to say autoimmune disease and just not even associate it with arthritis.  I don't understand why the arthritis association doesn't focus on separating the difference.  Maybe this would help clarify the confusion.  Maybe this would help advocate and do away with some of the ignorance. 

I also wonder do the associations like the arthritis foundation actually know the difference themselves.  Do the employees at these type places know the disease--sometimes I wonder are they all healthy, they must be!  Because one of the first things they say to folks with arthritis is exercise will help.  Well, that's not what you say to someone with an autoimmune arthritis.  That's not what you say to me!  That's ignorance.  Exercise?? Really?? Do you know what ankylosing spondylitis feels like?  Do you know it's hard for me to walk sometimes? Do you know that I can't "exercise"? Do you care to educate yourself....

I've heard ignorant comments even from doctors--I just want to say really???  Actually, I may have-ha and I know for a fact that I've had to correct them and educate them myself!

I don't understand why we don't talk about autoimmune diseases.  We talk about cancer.  A thought just occurred--I wonder how many folks with cancer have a link with an autoimmune disease--now, that would be a great study!  I know the medications I'm on can cause cancer and one medication I'm on is a cancer treatment.  Is there a link??

So, my question is-are you an advocate or are you ignorant?  Harsh?  I don't really think so.  I'm not saying you have to go out there raise money, blog or talk to others about a certain disease.  I think that being an advocate is also knowing, educating yourself, even trying to just understand.

For me; Life isn't about waiting for the storm to pass...it's about learning to dance in the rain".

I have AS, but it will NOT have me.

9 comments:

  1. ma'm i too have it and m suffering with drop-dead pains many a times,especially in winters... i have it for past 4-5 years and i have and most of the doctors don't even know about it (sad but true)..i have been diagnosed with it recently,like a week back...m very scared now,as m just 25 and doc said that thr s no cure for it and i have to live with it...exercise and deep breathing (yoga) is the only option that i have,its wht i hv been told..
    this saturday m going to meet India's biggest n most reputed doctor..I don't want to live with this deadly thing...even some kinds of cancers have cure :( ...
    i feel so disappointed ...i have never had even a single drop of alcohol and neither have i smoked in my life... dunno wht god wants from me!

    i don't want to live with pain-killers for my whole life! the injections are way too costly (100 thousand indian rupees aprox)... i have read that ayurveda have some cure for it...but m not sure about it!
    will write to you as soon as i meet the doctor..
    regards
    nikhil mohan
    india
    #0091-90341-62302

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    1. I've never heard of a cure. Be careful as to what you hear. It is a terrible disease to have to live with. I agree, even with cancer there's a hope for a cure--not for us. I hope you find something that works to manage your disease. Don't be afraid to try different medications to find what will best work for you. Try and stay positive (I've found that helps) also give it over to God. His plan might not be a healing, but I do know he can. I also know that he can use us if we let him. Best wishes. Nice to know you my friend!

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  2. I have been Dx for 1 year now, and started on Humira (anti-TNF drug/ Biologic) a few months ago, and it gave me my life back. Its not a cure. but it gives me enough relief that I can excercise. Granted its not what "healthy" people would consider excercise, but I swim a couple times a week (although I use float belt because I dont trust my muscles anymore) I stretch every joint gently every day, except when sick or flared. if you dont move your joints as much as you can, you will fuse quicker. Also i make sure to watch my posture and try to remember deep breathing too.
    There are so many other things it affects, and Humira has its own set of problems, like now I have vertigo ! Kickas.org is the best resource i have found. They are so helpful and really understand what it is to have it.
    Rhumatologists in great research hospitals are your best bet for a doctor who can really help you. No starch Diets are helpful too but those can be hard to maintain.

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    1. Glad you are able to "do life". Been through humira, and enbrel. I'm on remicade and for now it seems to work. I totally agree--it might not be called excercise to most, but moving and streching IS excercise for those of us with AS!

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  3. I understand completely. It is so difficult. I actually stumbled upon this site while working on a project for school. I am trying to design an Ankylosing Spondylitis awareness website for my school. We need to make people aware of the disease. Most people have no idea what it is and have no understanding of what we go through. In fact, I rarely ever speak about it, I suffer in silence. And to be honest, even in my project, I haven't once specifically announced my diagnosis. I don't want it to be considered a crutch, I want it to be informative and educational.

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    1. When I was first diagnosed, I kept it pretty quiet too. Now, I've decided to educate. There's too many folks who are suffering in silence. I have learned so much myself--things I had no idea about. I wish you much luck in life and advocating for all of us! Send me the link to your web-site when you get it up!!!

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  4. I am happy to hear that you are all legitimately interested in raising awareness for Ankylosing Spondylitis. I know it is hard for many to exercise with our condition. I may be an exception. I may be a success story, but the important part about this whole thing is that we remain positive and help the others who may not be as strong minded as we are to speak out. It is about not being selfish about our pains and progression. It is about showing the world that we want to make a difference in the world. "Ankylosing Spondylitis"? "Yeah, I know what that is. It is a degenerative autoimmune arthritis." I would love to hear that from a common stranger. Baby steps. It won't happen unless people like us do something about it.

    I hope to raise awareness for this disease through racing in endurance sports and showing that I can compete with the professional athletes. I will educate through public speaking providing information to the general public so that they are informed. If we want to change the fact that nobody knows what this disease is, then we are even more ignorant if we don't do so ourselves.

    I STAND TALL with you Meloni. Things are happening for the 501c3 Helgi Olafson Foundation that will target this exact cause. Come together with me and other health activist from around the world to spread the word about A.S.!! Even if you can't exercise, that is ok because your words are more powerful anyway.

    I will push physically, because I can, but that doesn't necessarily mean that you or anyone else has to, as long as we remain positive and stay on track with the common goal of making life easier and more comfortable for those in the future who have Ankylosing Spondylitis.

    Please email me at helgiolafson@gmail.com and go to facebook, check out I am A.S. Positive and "like." Also ago to http://www.thefacesofankylosingspondylitis.com to see other peoples stories.

    http://www.helgiolafson.blogspot.com is my blog

    Thank you for reading

    -H

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    1. Well said! We must STAND TALL together!

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