Ankylosing spondylitis wife, mom, and grandmom!

Having your rheumy tell you she might send you to a neurologist makes you think...hmmm I've seen one!  What was his name?  Where are those records.  The AS in the neck is pretty bad lately so, I got to thinking, when I fell down the stairs is when all this started!  So, let's back up a sec. In Jan of 2006, I took a nasty fall down a flight of stairs.  The good part was I was on my "rear" the entire fall, bumping down every single stair.  I did fling my right arm trying to stop myself---didn't work.  OK-here goes-numbness in right arm was pretty bad.  So, my primary care (PC) Dr sent me to a neurologist.  After tons of tests, and seeing the ortho Dr at the same time, it was decided I'd have shoulder surgery.  STOP!  I now have the records (yes, in 2012) from the neurologists.  I'd like to share his "impression" of me--I guess that's his fancy word for diagnosis.  OK--typing exact as my records state-- "CERVICAL SPONDYLO...

Don't you love hearing the comment, you must be feeling better today--why?  Why do they say this?  Am I smiling, laughing or not limping..what makes someone say, "you must be feeling better today".   I really want an answer to this statement.  I do have days that are worse than others, but for the past hmmm maybe 4 to 5 years, I've had pain.  Recently things were just getting worse and worse.  I'm on Remicade now and I do think it's helping.  BUT and this is a BIG BUT---there is NO CURE for what I have.  Those of us with "invisible illnesses" understand each other.  It's much easier for someone with a sickness that can be "seen" in some way.  For those of us that have diseases that can't be "seen"---it's more difficult.  You may ask why?  Well, because if you can see it, you believe it.  That's simple enough! We refer to ourselves as spoonies for a reason (and those of you with an invisible illness who do not k...

Looking at my last post..Dec 1 so I guess I'm just aiming for monthly here lately.  Well Christmas (holidays) has come and gone.  It was a wonderful time with family.  2011 is gone and 2012 has begun.  I'm not one for making "resolutions" and really think they are a waste of breath!  I feel as we should live each day as if it's our last.  Making every single day count!  Not just Jan. 1st!  I mean seriously how many folks actually keep the resolution they made...I bet it's few to none! Getting diagnosed with a life changing illness will sure make you "think" about "life" and how you live it!  2011 was certainly challenging financially and physically.  The economy is like a slow sinking ship right now and I really don't see an end at the moment.  So changes were made in that area and you know..it's all good changes.  You don't just buy/spend.  You really focus on things that are needed instead of wanted (big difference her...

Can't believe that I log in and it's been a month since my last post.  It has really just been a VERY busy time, and to top it off when you don't feel that great--it's hard to just keep up! New Rheumy--I like him, but just not sure how knowledgeable he is on ankylosing spondylitis.  Yep--just because you see a "specialist" doesn't mean they "know" your disease!  I wish so much that I could just stay with Dr. Butler.  She knows AS and and I LOVED her!  Had an MRI done of my sac. joints and no damage thus far.  GREAT news!  But us females with AS know that other joints are more damaged in females before the sac. joints.  I am happy to know that there's no damage there though.  I do sometimes wish that I could have a MRI of my entire body--ha!  What is going on with the neck, knee and shoulder???  Those seem to be the worst--so I'm also going to see an orthopedic doctor next week. Here's the thing folks--it's up to YOU to be yo...

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...