AS is "life altering/changing"!

By -
When one has AS, "life" plans quickly change! I say "life" because it's everything you do...it's simply "doing life" that changes!

Everyday you select the type clothing for the days activities or events..when one has AS, we select clothing on how much pain our body is in that day.

Do you dread certain days/things...with AS, I dread methotrexate! I sometimes put it off a day just because I hate it so. I know I shouldn't but I do. :(

Do you "think" about what will hurt when you're intimate with your spouse? Yea, with AS the pain NEVER stops...so "it's" always on your mind no matter what you're doing or where you are.

Do you ever think, I need to move because of a disease??? My home is beautiful. We love it, but..here's the but, it's 3 levels! Stairs to even come in to my home, so I've often stood at the bottom of the deck looking up and thinking--how am I going to get in the house? Have you ever wondered how you could "walk" into your home???!!! Or thought if we were to move I won't be able to help. I can help some now, so we need to do this while I still can and am able. Needless to say, we've put our HOME on the market! Not because of anything other than AS! Now, what a terrible time to sale--it's a buyer market, not a sellers! But, we will not just sell for the sake of needing to sell. This is our home and if it's meant to be, it'll happen. Otherwise, we'll just stay for now.

So, it's spring break and we're packing for the beach...with AS you plan for all types of "days" that you might feel...plus a bag just for all the medication you must travel with! While I'm looking forward to heading to the beach....I also know that the 8 hour drive will be a killer-literally! You have to realize that your 1st day will be a day of recovery just from the car ride! So, there can NEVER be a quick trip--might as well not go at all!

AS is life changing! It slows you down. It affects your ENTIRE family! It affects your relationship with your loved one! It doesn't just affect the person with it.

It's life changing/altering for all!!!! This is kind of off topic--but what I hate is explaining AS and then you get the "oh, it's arthritis"..yea, it's just arthritis. My fav lately was someone saying "well, at least it doesn't affect your organs"....hmm my reply kind of shocked that person, uh, well, the medicine I'm on can shut my liver and kidneys down, and AS actually can affect my HEART and my eyes. So, I'm ending with April is ankylosing spondylitis (AS) month. Do you know what AS is? Truly??? Do the research and find out...just a few facts...

-2.4 million-MILLION-people are affected by AS and it's related disease.

-AS affects more people than multiple sclerosis, cystic fibrosis, and Lou Gerigs COMBINED!



It's time for folks to KNOW...KNOWledge is key! AS has my body and sometimes my life but I'm determined to NOT let it have me!

Comments

  1. Wife, Mom, AS, and MS all as OneApril 1, 2011 at 11:44 AM

    You hit the nail on the head! I can relate to all of it! I think I am going to make your last sentence my theme song with just a slight change. "AS and MS has my body and sometimes my life but I am determined to NOT let it have me!" Thank you for your blog.

    ReplyDelete
  2. The Feeding EdgeApril 1, 2011 at 12:27 PM

    Hi Meloni,
    Wonderful blog post! I so hear ya on the plans for the plans - lol. We learn to adjust to a life with this disease but it doesn't mean it becomes us. I for one will not give up the awareness fight until the simple utterance "I have spondylitis" is met with true understand and not glazed over eyes or someone who thinks they know what it is and then have the answers to our "cure" Have a wonderful time at the beach - rest, relax, recoup, and feel the sun on your face.
    xox Jenna

    ReplyDelete

Post a Comment

Popular posts from this blog

when your DR says, "you are making my brain hurt"

By -
Image
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...
Read more

Weight loss/gain/bloating/gassiness.....

By -
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...
Read more

Just trying to "do life" with AS and sometimes it's hard!

By -
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...
Read more