So this idea of blogging has been in my mind for a while now....but the thought of having a diary that is unlocked and everyone reading..well, that kind of bothers me. Having a disease and wanting folks to be aware is the main reason for this blog.
A couple of years ago I started having pain. Pain in my lower back and especially my ankles and hands. Nothing like little sausage toes...now don't get me wrong, I love little smokies-in a crock pot for tailgate food-not my toes. And let's not forget the dreaded "kankles" that I now have. For those of you who are not familiar with the word "Kankles"--let me define it for you. It's where your knee and ankle have become one--hence my families term-kankles!
The pain was sooo bad, my primary care doc-after a ton of blood work-sent me on to the rheumy! I was diagnosed with fibromyalgia. The husband always said, I just don't think you have fibro. On a regular visit to primary doc, she says you know you test positive for ankylosing spondilitis...ankle WHAT?
Off to a NEW rheumy who I love! After Dr. Pauls examine--yes you have AS (anklylosing spondilitis). FYI-I carry the genetic marker HLA-B27 should have been a sign for the first rheumy..but he missed it!
So, this new disease for me..hmmmm it's hard. I'm a very active type person. I'm learning how the pain is constant. What I do sometimes sets me back for a couple of days. I even come home and look at the stairs that I have to climb to enter my house and consider calling my husband on the cell to come carry me in because the knees and ankles are hurting so bad. Then I think about how bad it would hurt if he through me over his shoulder to carry my up and in. Now, don't get me wrong he most certainly could and has many of times--before AS and how I would love to be thrown over now..but AS won't allow that!
Another hard part is the people who just don't get it. I look fine! Limp every now and then. Have swollen joints. Have toes that look like little smokies. Have kankles. But, the pain is, at times, unbearable--but you will not know it if I can help it.
I have this disease but I will NOT let it have me.
So, here's my first blog! A 43 year old mom with ankylosing spondilitis (AS). Mother of 2 beautiful daughters, a wonderful BFF husband and my english bulldog! The story continues.......