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Jan. 20, 2019

My Name is AS and 4 Reasons to Start Treating your AS

My Name is AS and 4 Reasons to Start Treating your AS

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today is going to be kind of a unique episode. I'm going to do a couple of things, but they are tied together. First and foremost, I'm going to read an item that I found online called, “Hello, my name is Ankylosing Spondylitis.” From there, I'm going to review an article that talks about four reasons that you should be treating your Ankylosing Spondylitis. So these tie together because one paints a very, very bleak picture of what we deal with and what you may deal with it sometime in the future. Again, this is not set in stone medical advice. It's strictly just readings and opinions. So make sure if you have any concerns or Questions about anything that we discussed today that you go ahead and talk to your doctor. And then lastly, I'll consult an article from healthline.com about four reasons you should treat your Ankylosing Spondylitis. So I hope you guys enjoy the two pieces put together and I think Kylie Frost from Kylie's race to beat Ankylosing Spondylitis Facebook page for the information. Last, but not least, a housekeeping item. I want you to know that Patreon page is up and available. If anybody should feel inclined to become patreons of this podcast, it's greatly appreciated. Secondly, if you go to the spondypodcast.com page, on the right hand side you can access The Ankylosing Spondylitis Podcast t-shirts, sweatshirts, there's men's women's versions of shirts in there. So I hope to see everybody ordering. I've gotten some feedback from folks that have ordered so far and they like what they see. Everything will be on order until I believe the end of February and then the items will be printed. And you'll be contacted about shipping dates and shipping costs for the items at that point. So anyway, take care and enjoy. The other night I was going through Instagram and I came across this post. And it was a discussion or writing about ankle closing spondylitis. I read it and I thought that is exactly my existence with Ankylosing Spondylitis. Now, I know many of you have different outcomes again, because this disease affects us all differently and I see many of you that are not all but many of you that are younger and haven't had quite fusing yet that you end up with a different experience to how you deal and the ways you can deal with Ankylosing Spondylitis. 

I wanted to read this and but I hope anybody that wants to discuss it will email me at Jayson.Sacco@gmail.com. It's on the web page. For spondypodcast.com and Jayson is spelled j a y so n dot s a c c o @ gmail.com. I did find this on a Facebook page that was called Kylie's Race to Beat Ankylosing Spondylitis. She is in New Zealand and is working to run marathons in spite of her Ankylosing Spondylitis. So I cheer on, I congratulate her and I hope that you all head over there and like her page. 

So let's go ahead and I want to read this and it's a little lengthy, but here we go. 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'll 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 unfair. 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 and 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. Out of the 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 and your life a belt you will tie around your leg just so you can lift it to move it 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 a crush create endless headaches of mass destruction of your mind and soul a pain never relieved by medications 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 last motion, the pain, the tears, the fight. 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 buys have no idea who I am or the monster I am. I have 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 forced me 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 there are painfully hardened masses like pure bone painful throughout frozen from ever stretching, flexing or any motion again and on fire with pain to just because I can Pray to God beg him to end it all, beg him to make it stop cry your tears and scream and pain. I will never let you forget. I live in here with you. I am one of the worst ever degenerative diseases to consume living creatures and never end my week. I will destroy you and more every day. Be sure to remember who I am. I am the all-powerful Ankylosing Spondylitis. Say my name, say it loud. I 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, specialist 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 managed to find inner strength to fight me the sheer willpower to remain battling me the pure fight that an IV remember I will eventually be attacking or internal organs one by one hardening killing them as I strangle their nerves, blood flow and overall movement like the bones, tendons, joints and ligaments I began with you, you will not win. In this final part, if that's not enough is what Kylie wrote. And it goes all in all I can say this disease is evil. This disease had destroyed who I was, destroys who I currently am, and assure to destroy all of whomever I ever could be. It's destroying me emotionally and mentally to I would not wish this on anyone, not even a worst enemy. Ankylosing Spondylitis knows this. How will make people see and know your name before you have completely destroyed and gotten rid of me. Again compliments of Kylie Frost from her Facebook page, Kylie's Race to Beat Ankylosing Spondylitis. 

That's pretty heavy stuff. Not all of you will have encountered this level. There's things in this that obviously I haven't encountered yet, and I hope never too, but I think we can all take pieces from it and apply them to not only what we've been through, but what we're going through and Most likely what will encounter in the future. So I hope you enjoy the rest of the episode. You know, I really appreciate everybody that listens to this. 

Let's get into this. This particular article that I came across again was from healthline and it's written by a woman named Annette McDermott, and I'll have a link to this in the show notes and it's “Four Reasons to Start Treating your AS Now.”

Number one, well, obviously Let me take a step back as everybody's well aware, or I hope is aware there is no cure for Ankylosing Spondylitis. We all know it's a very painful at sometimes more than others, but painful, you know, chronic disease that we all have been lucky enough to get in. So as we know that this arthritis can affect your spine and in my case, my lower spine is already fused. There's nothing I can do to change that. But if you're younger, do what I didn't do, which is exercise, check out yoga. I think yoga is really beneficial and wish I had found it way, way long ago and actually put it to you Because it really helps to focus on your stomach muscles, you use them a lot and anything to keep that weight office and focus and keep those stomach muscles active is I think very important. So, on top of the spine, I've had AS affect me in my heels of my feet, my rib cage, my neck is quite bad and fused. I don't have huge abilities to turn it one way or another. So many times you'll see me if I turn I'm turning my whole upper body, if not my whole body to look at somebody. I also walk with a cane due to the hip replacements which I've covered in other episodes, but I'm just kind of going along as a checklist of what it's affected on me. And then last but not least as I write us, which I've had a number of bouts with, that's been quite a bugger. I have all the things that have affected me with Ankylosing Spondylitis. It's the iritis that I absolutely detest, and I'm glad that I've haven't had it knock on wood in quite a while. So all those things can affect you and you may have other things that affect you, I really haven't had any issues with my hands or knees. I don't know if other folks have but for those I've been fairly lucky and not had any real issues with those, you know, once we're diagnosed, depending on when and how you're diagnosed, you can really start to feel alone. And that's really one of the things I'll focus on as we talk a little bit as there's so many ways to get in touch with people now and reach out and you know, just listen to the podcast contact the guests. In the last episode Ricky White, he's a great person to reach out to if you have issues questions, his book I can't wait to read it is how to deal with your doctors and make sure that when you go in there you have an agenda set up so that your appointment is everything you need it to be also good if you're younger, doing the exercise and things like that as important and let's get into it. 

Number one, you'll manage your pain better. We all know that as affects everybody differently, and there's nobody out there, that's exactly the same as the other person which makes it very difficult to treat it. So one of the things you look at when you treat it as we all know, we need your general practitioner, hopefully a rheumatologist and then any specialists on top of it, whether they be saying acupuncturist, a therapist, physical therapist, because on top of the physical items that we go through, as can bring a whole series of mental items. Most of my life I've had severe anxiety, the anxiety was such that there would be times when it almost felt like paranoia. So most of that was been controlled. A lot of it was through years and years of therapy to deal with any of my issues that were causing anxiety. So don't be afraid to talk to friends about anxiety to reach out and get professional assistance. That's really where I want you to go is find a therapist that can help you with your anxiety issues. Ankylosing Spondylitis takes such a huge toll on our bodies that our minds pay for it as well. So you really need to make sure that that therapist is there to help you deal with the items that come along from Ankylosing Spondylitis. Whether it be feeling guilty for not being able to go out with friends having a lack of sleep, you know, that foggy brain that we can get. So all of that can lead to mood swings, depression and really get in front of that before it happens and talk with somebody whether it takes medication to help you with it or just talk you know, reach out and don't isolate yourself.

So under the your manager pain better, she listened number of items, including mood and mental health, sexual function, cognitive abilities, brain function, I had to laugh because she in this article, they repeated sexual function again. So I'm just going to go with the idea that this was just a very horny author and not a not a slip up sleep and cardiovascular health. All of those play a role in our daily lives. I have to sleep with us. Apnea machine, mostly I think because I'm overweight, but my snoring and everything is ridiculous. So all of these are items that I've tried to address cardiovascular health, I have very high blood pressure. Again, it's from being overweight and not having a ton of ability to exercise. I'm hoping to take up kayaking the summer as a good way to do cardio. So depending on where you're at, maybe you can do kayaking, maybe you can do biking, you know, whatever works for you, brain function and cognitive abilities. I'm going to leave that up to you dealing specifically with your therapist, to find what works best for you. Or, again, don't cut yourself off, reach out, talk to friends, make sure that you don't isolate yourself, and then sexual function, if you've got a partner and hopefully they're willing, you can try all sorts of different items. There's a number of different places that you can go to find sexual AIDS. Again, reference the show notes, I'll have links to different places. Whatever It can be that you need to help make your journey through as more fulfilling with a with a partner that you're having sex with. 

They're continuing to do research. I mean, jeez, this is now 2019 and over the last 30 plus years that I've been dealing with, as I've seen just tremendous leaps and bounds, including the biologics that we started seeing biologics on the scene, I think in 2000 Oh, was it 2003 and we started off with the TNF items and now I'm on Cosentyx, which I love But again, it's not medical advice, consult your doctor for any type of biologics that might work best for you if they are able to 

Number two and this is kind of what I was alluding to earlier. You know, as you manage your AS you'll reduce your risk of as related depression and anxiety. That's really a big one. As you go through and deal with the thoughts of I can't do these things that I used to love to do. I used to be a runner, a believer, not if anybody saw me now. They will wouldn't even be able to see that I used to love to run long distances cross country, you know, to three miles, I can't run two or three feet now. So with that said, you know, I've lost the ability to do any type of hiking and getting out in the woods that I really liked to do. So I've had to find other things like this podcast and some writing that I'm messing around with. So do what you can do to not fall into any type of funk and not try to let as overtake you. This disease is going to rob us of certain things. It just is what it is. I hope you can find a therapist that can help you deal with the process of what you've lost, but also what you gain. You gain a community of people that know exactly what you're going through. You're not alone in the struggle. So reach out to people see what they do for hobbies. I love to hear from people about what your hobbies are. I know some people do knitting and crocheting and different things that are not physically demanding, but still allow them to function. I've seen people Turn around and go from doing physically demanding type careers to doing computer work to doing stuff that is more of a sit at the desk and work to make a living. And then some of us have gone on to disability because the constant sitting is not something we're even able to do. So just whatever it is work to manage that work to talk to a therapist, don't let the depression the anxiety get the best of you. In this she talks about most people with as we know, live full of productive lives. We all know that living with pain and chronic conditions is challenging. So that's where the anxiety and the depression come in. She mentioned the 2016 study showed that people with ALS are 60% more likely to seek help for depression than the background population. Well, as far as I'm concerned, that's kind of a No kidding. If you're constantly in pain, you're going to be depressed. So you're much more likely to seek out the help of a therapist to talk through that. So again, Well that's kind of a no brainer item just understand you're not alone and go ahead and reach out for any assistance you might need. 

Also for number three on this she says you may limit your risk of as problems outside of your joints we know that we know as affects our spine, our large joints, mine was my hips. But she says in this as may wreak havoc and other areas of your body to according to the Cleveland Clinic as results and I issues in 25 to 40% of the people with the disease I write us a condition that causes I inflammation, light sensitivity, and even vision loss is common. When I first was diagnosed with iritis, it was treated as pinkeye. I was put on medications for pinkeye, which was the, you know, drops in the eyes. And three days later, I was in so much pain that even in the dead of night, the light from a streetlight would cause me blinding pain in my head. So I was lucky I was young enough living at home, my dad took me into the emergency room, and there just happened to be an ophthalmologist at the emergency room on a Sunday which usually doesn't happen he walked in and he found out I had Ankylosing Spondylitis he says you have iritis and he started treating it and he told me I was only a day or so away from losing my eye that's how severe it was. To this day there's times when I get a little bit of vision loss due to the damage done to the cones floating in my eyes and the stuff that stuck the doctor told me never to bother with LASIK because with as it's not going to heal properly and he says you're going to you're going to end up being a prime candidate for cataract surgery. I came to think about what the older folks have when they have the cornea is rework So anyway, just know that that I write us as a major one if you have any eye pain call and I've mentioned this in other episodes, call an ophthalmologist and get in as soon as possible. Let them know you suffer from Ankylosing Spondylitis. If they tell you there's a long wait they'll usually figure out a way to squeeze you in early. So again, as we talked earlier about doctors have on staff and ophthalmologist is another One that you want to make sure that you have a good relationship with. 

I've also in this and I wasn't familiar with this, but I'd love to hear from anybody that's experienced this is lung scarring. I'm not even sure what they mean by that. 

The next one she talked about was decreased lung volume and difficulty breathing. I have that they checked my deep breathing and I'm sure most of you always have your lungs listen to when you go in. I do have some tightness from my rib cage, I have met other folks that are really bad to have their ribs really affected and their breathing is compromised to a degree from that. 

Then she mentions neurological complications from scarring of nerves at the base of your spine and I'm not sure if that's what she means as far as like when we have SI pain, sacred iliac joint pain, or in my case, I had nerves damaged in my left leg from a hip replacement. So I have a drop foot, not sure if that's what she means or if there's other items outside of the SI joint. 

Then last but not least, you know this is going to be a short episode, it's, you know, just four things is that you may slow the disease progression, we know this, everything you can do in your 20s. To slow your progression, in my opinion is going to pay huge dividends in your 30s 40s 50s and beyond, if you can get ahead of it, do the yoga, do what the doctors tell you get on the