The Ankylosing Spondylitis Podcast

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January 23, 2019  

AS Podcast Journal

January 23, 2019

1/23/19

In October of 2017, I had come back to Michigan for a job interview. I was living in Texas and wanted to move back to Michigan. While in Michigan, I stopped to say "Hello" to my original Rheumatologist in Warren, Michigan. Dr. Allan Mortan (he doesn't have a website, but I linked to WebMD.com) first started seeing me in 1984. In 1984, Dr. Morton had been in business for about 7 years, and here he was in 2017 still going strong. As we briefly talked, he suggested I talk with my Rheumatologist in Texas about Cosentyx.  My Rheumatologist in Texas was Dr. Chelsea Clinton and she is a fantastic Rheumatologist. Dr. Clinton had discussed Cosentyx with me, and I had kind of put it on the backburner, not having had any real luck with Enbrel or Humira over the long term. I went home, set an appointment with Dr. Clinton, and within two weeks I administered my first dose of Cosentyx. I was to take 1 dose of Cosentyx weekly for five weeks, and then it would go to one monthly shot. Within a couple weeks of starting Cosentyx, I was not noticing the pain, soreness, and stiffness that could come with fall wet/cool weather. It was promising to me and I looked forward to being on the medication longer. It has now been 15 months on Cosentyx, I am back in Michigan, and the wet and cold weather fronts of a Michigan winter are going across the state. These weather fronts would have crippled me up, letting my AS play havoc with me physically. This medication has been an amazing tool for me to use towards combating AS, and for people just being diagnosed, the new medications should allow for amazing lives with hopefully a lot less pain. Talk to your Rheumatologist, don't be afraid of the shots. There very well may be many years of pain reduced living for you with one of the biologics.

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1/17/19

I read this as part of episode 006. Enjoy!

 

Hello, my name is Ankylosing Spondylitis.

I am your monster in the dark.

I only can be seen once I have destroyed you completely and it’s all too late.

I will make you tired,

I will make you weak,

I WILL create a complete pain throughout you that you cannot withstand.

I am the cruelest of CRUEL.

Your hands will cramp and creak.
Your back will be on fire.
The pain will be so intense it will drop you to your knees.
It will be so sharp at times, like a knife being stabbed into you over and over again.

I get great joy in destroying all that's good in your life and no one but you can see and feel the monster I am and what I am doing to you. 
Hidden from their eyes
I am master of all this, and the master of you.

Your hips, I will take them in pain so severe you will cry begging God to help you end your life.
A belt you will tie around your leg just so you can lift it to move in the mornings as I take your hips away permanently.

Your neck, my goodness your neck ... well, this will become a test of your will to live.
The neck so stiff and fused you can't move your head ever again, then the nerves I crush create endless headaches of mass destruction of your mind and soul, a pain never relieved by medicines or surgeries.
A 24/7/365 headache, so awful that it destroys you mentally and emotionally.
It's amazing what I can do. 

The knees, the lost motion, the pain, the tears, the fire.
Fighting every day waking up saying out loud to yourself, is this monster going to ever give me a break.

The scars are endless that I will leave on you. I will destroy and scar every ounce of you.
I will be sure to take your mental state and destroy your mind bit by bit.  
No one knows me or understands me but you, all others and passer-bys have no idea whom I am or the monster I am.
I am a name no one knows or even recognizes.
There is no cure, there is no beating me, I am too powerful.
The most powerful I am is when I consume your bones and hit them like vices crushing you tighter and tighter, forcing you to move less and less till no part of you ever flexes, bends or moves ever again. If your bones aren’t enough I promise to calcify your tendons, ligaments and connective tissues until they are painful hardened masses like pure bone, painful throughout, frozen from ever stretching, flexing or any motion again and on fire with pain too just because I CAN.

 

Now pray to God, beg him to end it all, beg him to make it stop. 
Cry your tears and scream in pain, I will never let you forget I live in here within you.
I am one of the worst ever degenerative diseases to consume living creatures and never am I weak.
I will destroy you more and more every day.

Be sure to remember who I am, I am the all-powerful Ankylosing Spondylitis !!!
SAY MY NAME, SAY IT LOUD!!!!!
It will not matter though because I am unknown to nearly all.
They will laugh and look at you and say there is nothing wrong with you it's all in your head.

Doctors
Physical therapists
Mental therapists 
Specialists
Surgeons

Let's not forget the medicines you take to help with me.
The list is long and side effects longer.
I laugh at the pure hell I put you through.

Lastly, be sure to remember that if somehow, some way you manage to find an inner strength to fight me, the sheer willpower to remain battling me, the pure fight to deny me...
Remember I will eventually be attacking your internal organs one by one hardening and killing them as I strangle their nerves, blood flow and overall movement like the bones, tendons, joints, and ligaments a began with.
You WILL NOT WIN.

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All in all I can say,.....

This disease is evil 
This disease has destroyed who I was, destroys who I currently am and is sure to destroy all of whomever I ever could be.
It’s destroying me emotionally and mentally too.
I would not wish this on anyone, not even the worst enemy.
Ankylosing Spondylitis know this.....
I will make people see and know your name before you have completely destroyed and gotten rid of me.

Compliments of Kylie Frost from her Facebook page Kylie’s Race to beat Ankylosing Spondylitis.

 

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The Ankylosing Spondylitis Podcast Journal by Jayson Sacco

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1-15-19

My name is Jayson Sacco and I have had Ankylosing Spondylitis (AS) since I was very young. I was diagnosed at 14 and at that time in 1984, I didn't give it much thought. Through the years, I have never really given my food consumption much thought. Sure, there would be short-term periods where I would try to watch my intake, but it was always about limiting the quantity of what I ate, and not eating to help with my AS. Then at other times, usually during periods of depression, I would eat with abandon.

I can remember watching the show The Biggest Loser, while I sat on the couch eating a 1/2 gallon of ice cream. I did drop sodas for about a year but ended up starting up again, just like the sugar addict I am. Starting at the beginning of this month, I said I was going to stop drinking sodas. I have been kind of successful at this. Prior to this point, I was drinking 5-8 12 oz cans or more each day of Mt Dew, and for years before that Diet Coke. So far I believe I have had three sodas this year so far. Not good, but it is a start. I am hoping this helps with my need to lose weight. I also started tracking my food consumption to see what all I was eating and what that came out to calorie wise. The app I use is called Lose It and I believe it is available for Android users as well as iPhone. There is some paid content in the app, but you do not have to access it if you just want basic information. I also now use another app called Medisafe to track what and when I take my medications. I can be very lax about taking meds and this is a good reminder for me. I also made my first order of CBD oil from CBDPure(www.cbdpure.com). This will be my first foray into using CBD Oil, so I will keep you informed. I also ordered Combo Pack C from the Pure Vitamin Club (purevitaminclub.com). With my odd eating habits, the full spectrum of vitamins can’t hurt.