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...

The moment the ophthalmologist puts his hands on the side of his head and says, “you’re making my brain hurt”.   Have you ever had this happen while at the specialist for a recurring visit? I have!   AS is in my eyes! Living with ankylosing spondylitis (AS) has certainly been a challenge. When you’re diagnosed they really don’t tell you all that can happen.   Basically, they just tell you about the potential for spinal fusion.   They leave out that AS can damage every joint in your body!   They leave out that AS can affect your eyes, your heart, your lungs, can cause inflammation behind your vocal box (not fun for this singer) and yes, can cause death. Why is it that so much information isn’t shared when you’re diagnosed?   One reason is simply that some doctors aren’t fully aware of what AS is and does.   Another reason is there is too much old data and information out there.   And lastly, AS effects each person differently.   Autoim...

You may wonder why I blog about this life-long Ankylosing Spondylitis (AS) journey that I’m on.   I didn’t just start right when I was diagnosed.   It took me some time to understand what I had just been told and also time to learn what exactly AS was.   I couldn’t even pronounce it!   Why do I have to deal with this for the remainder of my life?   There were so many questions and still to this day, questions seem to arise. My blogging started simply because there were a few of us AS folks who had “found” each other via the internet.   We all seemed to have the same story to tell, but yet in some aspects our stories varied.   The disease itself may vary, but we were all suffering and finding it hard to locate correct information about AS.   We began sharing and even blogging on the same topics.   Even when we all had the same topic, it seemed our “blogs” were different and helpful! During that time of “group” blogging, I realized I ne...

I think I always start with how long it’s been since my last post.   Also if you are the grammar police, then don’t read anymore!   I’m certainly horrible at grammar and spelling, and don’t need to be told!   The last several months have been a real struggle for me.   In September I started having hives and I don’t just mean a little breakout.   I’m talking covered from head to toe and even down my throat.   Shots and steroids were given for what we thought was an allergic reaction….but to what?!   So, I went off meds and started adding one at a time—NOTHING!   Who knows what the cause was.   So, I go for my SimponiAria infusion in October and a couple days later…BAM covered again!   Shots and steroids and NO MORE SimponiAria. This has to be the cause.   Granted I do NOT want to be COVERED in hives again, but this was the LAST TNF for me!   I’ve been through all that are AS approved.   This did not make me happy, be...

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...

I write a great blog when I'm laying awake in the middle of the night.  The only problem is I write that blog in my head as I'm trying to go back to sleep.  For those of us who suffer with 24/7 pain, our bodies NEVER rest (sleep) so we often lay awake in pain sometimes for hours.  I really did have a great blog all completed in my head last night..thing is, can't even remember any of it!  Just know it was a great blog! ha That's the other thing those of us who suffer from fatigue and chronic pain face, "brain fog".  It's real folks.  I had to pause a second just to think of the term-brain-fog!  It was lost!  So, here's the crappy blog I can think of right now...LOL.  Just me and AS.... I often chuckle to myself when folks mention how "tired" they are.  If only they knew the "true exhaustion" felt by those of us suffering with ankylosing spondylitis.  It's not a "tired" feeling, but a feeling as if you are stuck in qu...

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...