Wednesday, February 5, 2014

living with an autoimmune disease or 2

In October of 2012 my blog was on autoimmune disease and I listed some interesting facts:

-50 MILLION AMERICANS suffer from autoimmune diseases
-There are over 80 types/names of 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 most know about diabetes but didn't know it was an autoimmune.  Type 2 is NOT! 
-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 (AS) one of the over 80 types of auto-immune diseases. There are more people with spondylitis than Lou Gehrig's disease, cystic fibrosis and multiple sclerosis COMBINED!  AS is an autoimmune arthritis.  I also have been told I have OA, yes that's also an arthritis.  Found out that AS can speed up OA--wait, what?!  Osteoarthritis (OA) is the most common form of arthritis and effects 27 MILLION Americans.  It is the leading cause of chronic disability in the US.  OA is not caused by "old age" and neither is AS...so please don't be stupid (yes, I said stupid) and tell me you have arthritis too.  I don't have "arthritis".  I'm not having "old age" aches and pains.  I have autoimmune arthritis AS and I have OA.  Both of these are degenerative diseases...that means they are not getting better.  There is NO CURE!  I will NOT BE FREE of the disease..EVER!  This is LIFE.  Did you know that on the top 10 most painful diseases list arthritis is in the top 10--again, not old age--we all have this arthritis.  Yes, it's in the top 10.  Other top 10 most painful chrons and cancer!  Chrons disease is also autoimmune.

It's about education--for me, to know what I have and what I face and for you to try and understand and learn about these horrible diseases that effect so many lives.  So, before you say, you don't look sick or some other remark--they are always sick, or they are lazy...maybe try to find out what they are suffering with.

Even doctors sometimes can tick us off--I was at the dermatologist yesterday and she says, I see you have ankylosing spondylitis I 'm sure you get told all the time you're the "wrong gender".  What did you just say??  Really??  My reply, no, actually it's 50/50 male to female.  I think females get the wrong diagnoses at first because some drs think that.  She says, yea they probably get fibro.  My reply, well, that was my 1st diagnosis and no I don't have fibro.  Also, I'm not at that dr anymore!  Then as she's examining my "new" problem, we bring in several other doctors to look and say words I don't understand.  I hear a name of a new autoimmune disease (which I've already heard the same name from my eye doc).  I don't understand why autoimmune diseases like to have friends, but it seems they often do.  Thanks jacked up immune system!  Two biopsy's later and really not anything different to do (other than suffer with a new symptom---how'd you like a itchy body rash FOR LIFE!) I'm to continue with the current meds and here's a cream to try and help calm your rash.  Then I leave with some samples and a band aid on my arm and one on my FACE!  If you see my and you stare, I may say "what you looking at willis". 

So, there...living with an autoimmune disease is daily fights and struggles.  And yes, I will fight and struggle for the remainder of this life here on earth!  But, hey, Joy WILL come in the morning!

AS has my body, but NOT me!

1 comment:

  1. Hey darling, I recently found your blog and I am so happy I did!! I am currently in the process of try to get my diagnosis as I have majority of the symptom and a positive hla-b27 gene, I have Sacroilitiis, and I also have spondylosis and Spondylolisthesis which if your not familiar with those its, the first one is the arthritis in the spine and the second one is the slippage of the vertebrae over top of another one. Mine was a grade 3 slip. I also have cervical spondylosis too. I have issues with 3 rheumys which they keep telling me that I am too young for the disease, my spine isn't rigid enough which my spine has already started fusing back in 2006 but they didn't want to hear that from me and the crasiest thing yet they all said to me, "the disease doesn't have anything to do with your spine??" UMMM really?? r u serious...Thought you would get a kick out of that one!! I too started a blog about my health issues and my mental isses to help people know that they had other people out here if they needed someone to talk too. Drop by if you wish too!! Great blog once again!! http://kellystidbits.com

    Kelly lynn

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