Ankylosing spondylitis wife, mom, and grandmom!

#thatmoment you log in and realize WHOA it's been way toooo long since the last blog!  Things are on the up and up for our "life".  We can now say debt-free! YEP! DEBT FREE!  It really feels so good to know that you have no debt holding you down.  As for a house, well, we're renting now and hubs says he doesn't know if he'll EVER buy another home.  We like the idea of not having a mortgage and most importantly calling someone else to fix a broken "whatever"!  It would be fine with me to rent a small something here and a small something there...just saying ;)  Can NOT believe that both of my girls have one more semester of school--SR in college and SR in HS?? Say what???!!!  When did this happen?  I'm not ready! As for the ankylosing spondylitis--it's still here.  There's no cure.  Had someone walk up to me the other day and ask how my back was (that's how he asks about my disease) and I said, "I'm ok".  He says, no y...

I always think of the things that people say to me out of ignorance of my disease and I really can't blame them.  I too, was ignorant until this disease took over my body, but I've decided to become an advocate for myself and others that are suffering.  -50 MILLION AMERICANS suffer from autoimmune diseases -Can you name an autoimmune disease?  Only 17% of folks can. -Did you know that Type 1 diabetes is an autoimmune disease?  I would say you know about diabetes but didn't know it was an autoimmune. -autoimmune diseases are conditions in which the body's own immune system can (among other things) cause damage to the skin, joints, and internal organs.  The body actually attacks it's own cells.  In other words the body kills itself from the inside. -they run in families/are hereditary -over 75% of those affected are WOMEN -it is possible to have more than 1 autoimmune disease at the same time and the symptoms are often similar which makes it...

first off--starting with some facts! -50 MILLION AMERICANS have an auto-immune disease, yet only about 17% can name one -There are 100 different auto-immune diseases (sooo many) -Auto immune diseases are in the TOP killers of females UNDER 65! -There's a higher risk of getting an auto-immune disease if your mom and grandmom have one--yes, they are hereditary! --I HAVE A AUTO-IMMUNE ARTHRITIS ANKYLOSING SPONDYLITIS -There is NO CURE!  -This is my life--my future-- another important fact--my "arthritis" is not the same as just "arthritis"--it's not I'm getting older and everyone gets it.  I have an auto-immune type--which means my body is destroying itself from the inside out!  OK--now to the topic of help.  In my many waking hours because of my excruciating pain, I've been thinking a LOT on the topic of help.  Many folks offer or seemed concerned.  I'm sure I'm not the only person that thinks this way, but I'm not really gonna ...

Yesterday my pastor (Stephen Carpenter-SC) at my church (Christ's Church at Whitewater-CCW) started a series on FAMILY.  If you are close by, you should come!  The service yesterday was wonderful.  OK--plug over and now let the reality of the message/service, blog away... I'm JOB! That's what I've decided.  If you don't know what I'm talking about it, just dust off your Bible and read "Job".  SC started off by saying he's rolled over and said, "I don't want to get up and go to church" just as we all have (let me say all of our pastors are human so don't think they aren't).  He was referencing the aches and pains of getting older.  BUT, I immediately thought--I THINK THAT EVERY STINKIN DAY!  He also mentioned how he's learned that southerners don't "talk" about their problems, that they stay behind closed doors.  WHOA! He's right! I'm a born southerner so I know this to be soooo true! We say, bless h...

Even though we're all back to school and routines, life with ankylosing spondylitis doesn't end.  A thought, wouldn't it be great if we got a summer break! ha!  I'm still waiting on that "remission"...which I don't know of anyone ever in.  Truly the only reason I love "back to school" is because that means it's college football time!    Even the pups love some football.  This is my sweet english bully, Bailey cheering on her DAWGS while my daughters cutie, Kovu cheers for his team, the JACKETS.  My daugthers BF starts for them--when you're watching TECH he's #63! Off topic--This year we have some folks calling us "traders".  We are HUGE Georgia Bulldawg fans..always have been, but this year...this year especially, we'll be cheering on Georgia Tech just as hard!  Thing is, those that call us traders, they don't have the connections like we currently do!  Do you personally know folks on the team you cheer for.  I...

My last post I talked about how I had a spinal injection--well, it was literally a roll of the dice and I'm not a gambler and really dont' believe in "luck"..my hope was that this almost $1000.00 roll of the dice would amount to something besides regret that I've wasted sooo much money.  Well, 1000 dollars later and the visit to the DR for her to see how everything went--yea, sometimes it doesn't work on the 1st injection so we'll schedule another.  But, also after the exam, she says your shoulder is really "aggrevated" so let's do an injection today--sigh..sure.  Let's just say that hasn't helped either! Get the call from the surgery center and they let me know my cost that will be due that day of my 2nd injection--almost 600 dollars??!!  And that's not the Drs portion either--OK--this roll of the dice isn't going to happen!!  Even though in my mind, I say what if it actually helped...sigh Having a chronic disease is EXPE...

Had a spinal injection (between the shoulder blades) yesterday.  Supposed to help with the pain in the neck the shoulder, and the numbness of the right arm.  I was a bit nervous about this-would it hurt etc.  Got to the surgery center and they called me back.  Nurse comes in the put in an IV line.  She says this is a numbing shot.  I ask what are you numbing and she says so the IV won't hurt--I literally laughed out loud!!!  Then I tell her, I get monthly remicade IV's.  She says, Oh, then this probably wouldn't have bothered you.  In my mind I'm thinking not really-I'm used to it.  Then another nurse comes in, says she's going to give me--can't remember the name--but I say what's it for, her it's something to make you a little sleepy and relax.  Well, then all the sudden---I'm like oooohhhhhh!  She said you feel that?  YEP!  Then she gives me another dose.  I think I remember saying that was better than a m...

I would love nothing more than to log on and say---I have no pain today or better yet, I'm in remission.  I've heard a few folks say this and then I wonder did they have A.S?  The same AS I have cause everyone that I'm aware of having what "I" have--there's NO REMISSION.   Yesterday was the 4th of July!  Happy 4th everyone!  Those of us with AS woke thinking will I make it today.  If you're wondering...no I did not.  I couldn't manage an all day event.  Went to the parade.  Then went to see my beautiful Laney Ann sing---stood outside in the heat.  So, no fireworks.  Too much pain and exhaustion.  GREAT NEWS Laney Ann's CD has been pre-released!  And she's giving 10% of all July sales to AS!!!  Research and knowledge is what we must have!!!!  You can listen and purchase her music at http://www.tatemusicgroup.com/epk/?id=17500   EXCITING!!! http://www.tatemusicgroup.com/epk/?id=17500    on...

Since the last blog, I know forever ago, things with me and this AS of a body has been VERY difficult!  Let me back up or start whichever you prefer! Mid April, I am literally hugging a trash-can and trying to manage a terrible stomach virus.  Husband comes in and says hes made himself a DRs appointment for this terrible, itchy, painful rash.  Turned out he had shingles.  I head in for the monthly infusion... If you notice the little cotton taped on my hand--vein blew and this was stick number 2!  They find out about hubby's shingles and put me on the biggest horse pill antibiotic ever seen--as a precaution.  As soon as I'm over this antibiotic I end up with a bladder/kidney infection.  One so severe they were discussing the word hospital?!  I couldn't hardly walk from the pain of the kidney's.  A shot and prescription and 3 days later an IV of meds and I'm finally on the mend.  OK--all you ladies out there reading this--how mu...

I know it's been forEVER since the last blog.  What can I say except FRUSTRATED here!  There are lots of experts out there for various things that happen to your body---I just want an ANKYLOSING SPONDYLITIS EXPERT!  Is that asking to much? In the past couple of months, some of the comments from my Drs have been these are true statements! by the ortho dr -you know AS in females is rare (in my mind I'm thinking not as rare as you seem to be implying because I know a LOT of females with it) -you look great but you do look like you're in a lot of pain (seriously?!) -me, it's my neck---doctor, it's not your neck, it's your shoulder--we'll do nerve conduction -after nerve conduction--it's not your shoulder it's your neck--I seriously just want to scream at you right now doctor!!!!  by the eye dr -you're just too young and pretty to have such a disease (thank you sweet man-I do like him) -I know you have eye pain but I don't see anythin...

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...