Ankylosing spondylitis wife, mom, and grandmom!

Mommie and Mom--is there a difference? YES!  I think so!  Your little ones start out by calling you mommie, then as they get older it becomes mom.  So, is there a difference--not in the love that a child has for their mom, but it's all in how they say it. I have older children now and there is a difference!  Whether I'm Mom or Mommie and no matter how old they are--THESE beauties will always be my babies! Can you see the text from that teen that starts "Hey Mommie"?  My reply--hey, "what do you want"?  HA! Or how about this one "MOM" (insert a whine here).  Or "mommie, I don't feel good". It's all in the growing up and becoming adults.  We all, at some point, no matter our age want our "mommie" Well, I'm learning each day living with a chronic illness, that sometimes being "mommie" is very hard.  I will NOT let ankylosing spondylitis take the mommie from me!  I love when my girls need "mom...

When given a topic of self-esteem nothing "bloggy" comes to mind. I'm not an arrogant person, just that I do not struggle with a "low" self esteem. I can think back to my childhood and all the bullying that I endured, but even that didn't stop me from reaching for things I wanted. And trust me I was certainly one that was bullied a LOT! So, having a chronic, life-changing, VERY painful disease doesn't "bully" me enough either to have a lower self esteem. It just makes me want to "reach" for things that are harder. Not really setting myself up for failure, but learning the limitations and/or setting new ones, but still LIVING TO THE FULLEST! The fullest that a life with AS can be. I think that's where fear comes in. Are you afraid to try? Are you afraid to reach for those things that seem so far away? I think a lower self esteem causes fear! So, for me I do think they can be related to each other. Now, there are things that mak...

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...