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...

Hurricanes, earthquakes--- well, not exactly it's called ankylosing spondylitis! That's my storm I'm living in and through. While storms generally come and go they sometimes leave a "mess" that can be cleaned, my storm has made landfall and keeps churning! If only it would pass and let me clean up the mess. I'm worried that the mess it's continually spawning on my body will leave severe long term damage for my future. Those of us who have ankylosing spondylitis only wish there were planes flying in to evaluate this disease---knowledge and research is sooo needed. Even finding doctors who "truly" know AS can be hard! There aren't many medications for those to weather this storm! We don't want to "mask" it! We want to defeat it! We can't even prepare for this storm that's causing havoc on our bodies. There's no evacuation and boarding up...it's every minute of EVERY day that we stand in 200 mph winds holding...

I think this entry is probably the easiest to write! What would I do without my significant other..Lang! I think of how hard the past 4 years have been as I've been diagnosed with a horrible disease. Something that I never would wish on my worst enemy...yet, something that not only affects me, it also effects my family and my husband! He tries to understand what I'm going through and I in return try and understand what he is going through. You may be saying right now, but he doesn't have ankylosing spondylitis....and I just stop and think...obviously neither do you or your significant other because that wouldn't be your thought! Chronic diseases effect everyone they are around! For those living with a chronic disease you know how important it is to have support. That person who will let you just lay there and do nothing because that's all you can do! That person who stays positive for you and yet lets you be all grumpy if need be. That person who all the sudde...

I understand why some people get to the place of hope being lost or having no hope. Each day a person that suffers from a chronic disease has questions of hope; -I hope I can make it today with no pain -I hope I can endure the pain -I hope I can get a good nights rest -I hope that since I'm not sleeping, I won't suffer tomorrow -I hope that I can make the plans with friends -I hope my friends will understand when I cancel -I hope I can clean my house today -I hope nobody stops by because my house hasn't been cleaned in days -I hope I can do the laundry -I hope everyone still has undies since I don't feel like doing laundry -I hope I can make it to the grocery store today -I hope we have something in the house to eat because I just don't feel like moving -I hope they can get my disease under-control -I hope they find a cure -I hope I can walk up those stairs -I hope nobody is behind me, cause I'm going slow -I hope I don...

I think for the most part it's safe to say that we all regret something. I regret that I didn't have that dessert...I regret that I had that dessert! ha! Seriously, we do have "things" in our lives that we regret. Maybe it's about education...you regret that you didn't get a certain degree or that you didn't pursue something while you had the chance. You regret that you didn't take that job when you were offered, etc. You regret that when that door was open, you didn't take the chance and walk through it. Living with ankylosing spondylitis causes one to have regrets about--hmmm--different things. Like regretting that you couldn't go to dinner or just didn't feel like "going out" or doing something as simple as sitting outside with your family. Regrets that you couldn't be the mom or wife that you REALLY want to be. Regrets that you truly can't work anymore-so you feel as if you aren't contributing like you should. You ...