Ankylosing spondylitis wife, mom, and grandmom!

We often say we "need" something when really it's just that we "want" something. It's really not a necessity just a want! Having ankylosing spondylitis there are some things I "need". I need my medication. I need my rest. I need my husband to help me out at times. I need my rheumatologist. I need my comfy cloths that don't hurt. These are just some of the basic AS needs. But, there are other "needs" associated with my AS as well and those have to do with others. I need folks to just try and understand. I need to cancel sometimes. I need you to walk slower. I need for you to NOT tell me that "oh, exercise is good for arthritis". Really...well, I don't have "arthritis". I have ankylosing spondylitis. I need you to not zone out after YOU ask a question about AS or how I'm feeling. Truth is...there's a HUGE difference between wants and needs. So, what are your wants? I want new shoes, new clothes, a new ca...

Anytime you go to the doctor they ask you your symptoms (of whatever you maybe going for). Most of the time, this is a pretty simple question-I mean if you're running a fever, throat hurts, coughing, head-ache--they could say sinus infection or strep. If your blood work shows something, they can give you a diagnoses. Well, here's the thing, when you have ankylosing spondylitis--NOBODY REALLY KNOWS THE EXACT SYMPTOMS! ARGGGGG! I really have been thinking of this--my symptoms. Can I think back of when I truly think AS started for me. Could it have been at the age of 15? That was my first knee surgery--for arthritis! Could it have been the bad headaches as a child--um--yes, this is a symptom. Was it the 2nd knee surgery? Was it the shoulder surgery? When did the AS "really" start for me? I know when I got to the "advanced stage" was around 5 years ago. The symptoms at that time were ankles that were so swollen and hurting so bad that I could hardly walk. Swolle...

So, I'm literally cheating right now. I'm part of an ankylosing spondylitis blog group and I'm several blogs behind and yep-I'm combining them to catch up! because I've literally been in a BLOG FOG! So the first item is sleep-which I now think should've been a 4-letter word! Those of us who are in pain 24-7 don't really "sleep". Have you ever woke from your sound sleep because you're hurting? Maybe you moved and something all the sudden felt like a KNIFE stabbed you? Well, I have and do all the time. My eye even hurts and wakes me up. MY EYE THAT'S CLOSED! So, sleep is not something we "really" do. We try and rest every now and then, and even that's hard! OK-so what happens when we need some sleep or have a lack of sleep? We get ill! Not sick ill, but cranky! Hence the reason we're sometimes a bit short and snappy. But, folks don't realize that. They just think we're rude or something. You try going without sleep f...