Ankylosing spondylitis wife, mom, and grandmom!

Ankylosing Spondylitis (AS) effects each person differently.  There's no magic cure for those of us that are living with this disease.  It's a trail and error of medication and sometimes changing your life style.  There are some "common" things that happen in those of us with AS such as-- The main similarities that can occur with any type of spondyloarthritis are: Inflammation in the pelvis and spine that usually causes inflammatory back pain Pain and/or swelling of any other joint in the body (hips, knees, ankles, feet, hands, wrists, elbows, shoulders, etc.) Uveitis/iritis , the rapid onset of marked pain and redness in one eye at a time Psoriasis skin rash Inflammation in the intestine (Crohn’s, ulcerative colitis, undifferentiated colitis) Dactylitis, or “sausage digits”, the inflammation along the tendons of the finger or toes Enthesitis, inflammation where tendons and ligaments meet the bone; this commonly occurs at the back or bottom of the heel. P...

Don’t confuse inflammation with weight gain/loss and/or bloating Just let that sink in a minute.  Some have already stopped reading...if you're wanting knowledge and education of inflammatory disease...continue on... Let me just begin this post by saying…yes! I’m going to make some of you mad and you’ll probably unfollow me on social media…I don’t really care. In a world of be careful what you say or post-- In a world of #metoo--- In a world of “political correctness”---- I see a LOT of folks saying (posting pictures) look at all this inflammation I had and now look at me.   Yes!   I see you’ve lost WEIGHT, but I do NOT see inflammation.   So to kick off this New Year full of get your gut right, drink my drink and/or join the gym and everything will be perfect in your life STOP! JUST! STOP!   You are actually insulting those of us who truly suffer from an inflammatory disease; those of us who are PRESCRIBED the only thing that will help with i...

Those of us living with this horrific disease would love to be able to say.....I’M CURED!  Instead we just keep on “doing life” the best we know how! Seems I had a lot of comments asking questions about “how to help”....well, first let me say that I’m not a doctor.  This blog is intended to give those of us who suffer information and knowledge about AS, and let’s face it, it’s basically things happening with me and things I learn from others!  It’s all about sharing and very important that we realize that we all present differently and sometimes even have differing symptoms and pains!  But the more we share and get the word out there about AS, the better our care will be!   Some comments have been how to help without medicine.  Folks—-I’m not sure you can do that!  How do you manage a disease without medicine?  Find a good rheumy and get on a drug protocol that will MANAGE your AS.  Sometimes you go through a LOT of trail and error fi...

AS has my body, and NOT me! I usually end with this, but today It's going to be the beginning!!  I'm still dealing with the "healing process" from the anterior cervical discectomy and fusion.  I still struggle with the feeling of something in my throat!  I'm continually learning more and more about this horrible disease!  It would be much easier if it just affected one part of my body!!  NOPE!  Instead AS just continually gets more and more of me! Since my last post, we've had some exciting family events.  My youngest got married to a Coast Guardsman who we love!  This 2nd son in our family is a perfect addition.  Thankfully they aren't stationed too far away either!  I'm that mom that would love her family to just all live on the same property LOL!  The wedding was beautiful!  Thankfullly AS didn't rear it's ugly head until the day after--and when it did--WHOA!  Talk about the worst day EVERRRRRRR!  Literally tho...

Having an autoimmune disease can be frustrating at times!   There’s the constant changing or adding of medications in hopes of figuring out what will slow the progression of the disease.   What will actually “work” for you can be complicated and challenging to figure out.   Then you have to factor in what your insurance will allow you to actually have.   Why this is even a question blows my mind!! If your doctor prescribes a medication for you, then your insurance should have NO SAY as to whether you should “get” that medication or not. Every week begins with the glance at the calendar to see what doctor or doctors I have appointments with.   My sister once told me, “Your health is a full time job”.   Yes, it is!   Keeping up with the all the doctor’s appointments, fighting for medications, remembering if you took your medications, and then just making it through the day while in excruciating pain and the worst fatigue you’ve ever felt, IS a full ...

It’s been a LONG while since I last “blogged”!   We have moved to our new house.   Having an autoimmune disease that has no cure, causes joint pain, and fatigue like you’ve never known—among other things—makes life hard, but can make things like moving…hmmm I don’t even have a word!   I do LOVE my new house.   I love that it’s ours!   I love the fact that my hubby built it for ME!   Yes, we did think about me, this disease and my future in some aspects of our home.    Why have a tub in the master when nobody will get in it?!   Make the shower big—big enough that if a shower chair is needed, there’s room.   Make the door ways handicap accessible.   Yes, my home is ready for whatever ankylosing spondylitis, AS, throws at me!   This is NOT giving in to a disease, but being proactive!   Saving money when building our home!   And hey, it made for moving furniture VERY easy!! Haha   I’ve also gone through some...

First-if you are the grammar and spelling police...you will hate me, but I blame obamacare! read on! LOL Did you catch that headline? If you follow along on this blog journey (of a mess) of mine..then you'll recall that I commented way back when Obamacare/affordable care act was passed that I was scared that one day I'd be denied. I also had a "healthy 20 something" comment on facebook how wrong I was and I how fortunate we were that we'd never be denied healthcare. Well, I did delete said "healthy 20 something" because I couldn't take his ignorant comments anymore, but yea...here we are..I'm right and yes, you're still ignorant. OK--I might not be denied "purchasing insurance" but that's not "healthcare". Let's get this right folks. We are now FORCED to buy a piece of paper that's..useless. I had good "healthcare" until obamacare came along. I had good healthcare until all the changes. My husband...

Living with a chronic disease can sometimes get old fast! I was recently asked, "do you sometimes cry"?  Yes, I have. I have even said, "it can't hurt any worse today" and I quickly remind myself, yes, it can. When those tears fall...I then say, alright enough of that, AS-you will NOT win! I do believe in the power of prayer and the power of positive thinking. I've said it before, will I be healed, yes! It just might not be in this earthly body, it may come in a heavenly form. As for positive thinking, I am a firm believer that if you are in a constant state of "woe is me"...well, then it will consume you! I will NOT live my life that way!  That's not just about health, but about everything!  I assure you there is someone who has a "woe is me" that is NOT posting, that is WAY worse than your "woe is me".  And yes, I'm including myself! So-this disease or two of mine...the ankylosing spondylitis, yea, it's just no...

2 injections of Simponi down..is it working?  Well, I won't know until about 4 months--which is 4 injections (this is a monthly injection).  I love hearing from my rheumy, "well, we're out of options". I love hearing from the eye doc, "I'm getting worried"--of course I don't love either of these comments.  How'd you sleep last night? Do you wake from the worst pain and wish you could just sleep? I lost hours last night, as I do most--from pain. Ankylosing spondylitis and scleritis doesn't stop, rest or sleep. My body is continually attacking itself-joy?! You can't have a little AS, you either have it or not. The pain doesn't stop or go away. You can have more pain or less, but it's always there. Some folks call these flares--well, I've been in a flare since I was diagnosed, so I really don't believe I have flares. I just believe I have good days and bad. Here lately, there are mostly bad. The scleritis in my eyes is ...

Seems I'm running thru the TNFs as fast as they get approved!  Having an autoimmune disease with no cure means a life long fight to LIVE.  I talked with someone the other day about being sick, and we both talked about how the "little things" aren't really little anymore.  Also, how we take things for granted--oh, boy do we.  It's always wanting more and more.  New clothes (when our closets are full) a bigger house, when the one we live in is basically empty--I know there's furniture, but the house itself sits empty.   I'm sure we could survive a zombie apocalypse with our "stuff" that's in our home!  See the thing is, when you are suffering daily with a disease that you know has no cure, you start to look at things a bit differently--oh, I'm not saying I'm better than anyone in my thinking or that I have given up the "stuff"--I'm still very guilty, but I have learned to appreciate the "simple" things.  For ...

Why is it that with an autoimmune disease that we have to fight so much?  We fight to get out of bed.  We fight to make it through the day.  We fight to just live a normal life, which for the most part, is gone and will never return.  So, why must we continually have to fight for care? For folks to understand?  For knowledge?  For medication?  This exhausting fight is ridiculous.  I think for the most part, everyone is just so confused.  Confused as to what we have.  Confused what will help us.  I'm so tired of talking with women from all over the world who have DOCTORS telling them, "well, it's not AS, because that's a man's disease".  Yes, I've even been told something similar, "wow, ankylosing spondylitis is a man's disease"....ummm really?!  Just yesterday I saw a post where someone suggested it's not autoimmune but auto-inflammation...well, AS causes inflammation in the entire body.  All I know is that someti...

It's been a whirl-wind at our house lately. We had a wedding for our oldest-- Then one day after the wedding, I moved my youngest to Disney for the college program! I found out right before my daughters wedding that my AS was winning over remicade.  The high dose I was on and the fact that I was continually getting worse meant my rheumy wanted to change drugs.  So, I'm now on Cimzia injections.  I've got a couple more months before we know if it'll work or not.  Praying that it will, since it's the last AS approved drug--been through them all!  Can I just say that giving yourself injections of medication that is as thick as oil it's NOT fun!  I'd much rather have the monthly IV!  Then there's the eyes--see with AS there are other problems as well and one of mine, is the eyes.  Sometimes folks with AS get iritis but for me, it's inflammation of the eye itself.  The AS thinks my eyeball is a joint, which in turn means infl...

In October of 2012 my blog was on autoimmune disease and I listed some interesting facts: -50 MILLION AMERICANS suffer from autoimmune diseases -There are over 80 types/names of 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 most know about diabetes but didn't know it was an autoimmune.  Type 2 is NOT!  -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 difficult to diagnose -autoimmune diseases are a leading cause of disability and death -THERE IS NO CUR...

I start with spelling and grammar errors that you my find....I just write my AS life, don't judge! It's hard to live strong and positive with a disease that SCREAMS weak and negative.  I do sometimes think, I just wish you'd at least try and understand...but then, I quickly think, NO...you'd have to feel what I feel.  I don't want anyone to feel this way.  It's hard to not cry and scream, WHY? Why, this? Give me something else. Take my voice, my eyes, my legs...TAKE THIS!  I DON'T WANT THIS!  Interesting to read in my devotional this AM, that Jesus even asked God, do I have too?  I don't know why I have "this", but I know that I don't have to go it alone.  Even though it feels like the loneliest "thing" to go through.  I guess that's why we sometimes think, if only you'd try and understand.  Emotional start to what was an emotional day filled with 2 disappointing doctors visits and tears.  Yup, tears.  Rheumy is tryi...

If you've been following, you know my last post was on knee lubricant injections.  Well, I had 3 in 3 weeks...not a fun procedure, but none the less, when you hear a 70% success rate, hey might as well try it.  Sooo, yea, I'm in the 30% FAIL!  Didn't work.  In chatting about me just wanting to be able to dance at my daughters wedding in May, he says, no surgery talk until next summer.  Obviously he must think I don't have enough time to heal by the wedding.  In the meantime, there is something else in the works for me to try.  Try and give me more time until a knee replacement is all that's left.  More on that, when I actually get all the details. Sooo on to the eyes, well, there are not to good.  Most folks with AS get the diagnosis of iritis, for me, well it's pretty much the same symptoms but actually the AS thinks that my eyeballs are joints and it's causing inflammation of my eyeballs.  I'm currently on steroid drops which cause c...

What I've seen a lot of this week with Affordable Care Act (Obamacare) and the government shut-down is that folks like taking a stance for something that they really don't know much about. And please don't insert a Jimmy Kimmel video where folks think ACA and Ocare are 2 different things.  People it was for  TV and yes, they only showed the videos that make for good TV.  I assure you there are folks who know the difference--but that wouldn't make for good late night TV. So, I post on FB--it was a post about political crap kind of day... Number 1---if Ocare was soooo great, then the first folks that should be FORCED to have it IS Obama and his family and then all the crooks up there in Washington. Number 2--folks like me, who have a disease with NO CURE..let me say that again...NO CURE, require medical things that most don't understand. Forget understanding the stupid Ocare--cause I understand how now, I'm going to be lucky to get treatment because of the ...