i’m getting worse (autoimmune update)


Hey, I’m Zach, and I’m getting worse. About eight months ago, I got diagnosed with ankylosing spondylitis, A.S for short. But in reality, it’s something that I’ve been dealing with for over ten years. The short of it is that I have bone growing where bone shouldn’t be. If left untreated, I would just become one giant stiff bone body man. Sounds cooler than it actually is. It’s an inflammatory disease that causes me a great deal of pain and, often, keeps me from sleeping at night. Not sleeping leaves me fatigued and in just this constant fog. Symptoms get worse any time I’m immobile for a long period of time. So sitting at my desk, laying in bed. Airplanes is a big one. Oh, sorry, excuse me. It f*cking sucks. It sucks. I’m living with a baseline of pain every single day, to the point that I forget what it’s like to not hurt… somewhere. Eight months ago, I got language to explain the chronic pain that I had been feeling. But this video is not about my diagnosis. It’s about everything that’s happened since. [i’m getting worse] So I started my medication and for a few months, life was incredible. I was able to sleep throughout the night without waking up in pain. I wasn’t stiff throughout the day, my body felt safe. During this time I was instructed to keep up with physical activity, *laughing* “Bowie!” but as the months passed, I got a little lax. F*cking sue me, I got lazy. I figured you know, I don’t hurt every day anymore, so maybe it’s okay if I missed exercising this week to stay late and edit or you know, it’s okay if I spend the whole weekend on the couch being a lazy sack of sh*t cause that’s what normal people do. But I’m not normal. Not anymore. Like with any invisible illness, I look okay- at least I think, I think, I think I look okay. But it’s a bizarre experience because it’s it’s just that. It’s invisible. You feel like you’re deteriorating on the inside, but you have nothing on the outside to prove it. So no one can see you getting sicker. You can’t see yourself getting sicker. I started waking up again in the middle of the night. At first confused, and then as the weeks went by, a nagging discomfort, then a pain. I was distracted, I was upset. I was back to where I was eight months ago. I was in pain all the time, but still with all that evidence screaming in my face, I was back to the same old bullshit of not accepting my own reality. Why? Why? Why? The truth is– the truth is I started ignoring my disease the second I could, the moment that my medicine started working. I stopped paying attention to it. I stopped researching it. I didn’t want to know more about my A.S. because the more that I would learn, the more I would have to accept that this is now a part of me. This is now a part of me. And that was a huge f*cking mistake. Yesterday, I had the worst flare-up I’ve ever had in my life. My neck felt swollen. I had a horrible headache, my body hurt. Um, today, even worse. So I’m laying on, Cassie Mobis peas, Keith’s Eggo waffles, and real ice. I have my little setup right here. [Keith] Do you feel like it’s worse than yesterday? Yeah, it’s worse than yesterday. My back is stiff, my neck is stiff. I… This whole week I haven’t been able to sleep. I’m afraid that I’m just gonna keep getting worse. It’s so easy to normalize the pain and just think like yeah, this is, how I feel. I don’t want to do that anymore. So it was time to go back to the doctor, finally ready to accept and confront my symptoms, and ready to attack this sickness head-on, and- he said I was fine. My inflammatory markers were still low, which means that the medicine was- the medicine is still working, which meant that I’m okay. And so I had to go home, uh, wondering if it was just all in my head. But then, I thought about you. After my first video on A.S, I got a ton of incredible emails, some people who found out that they also had A.S, or some who just discovered they had a different autoimmune disease, others who just had that something in their lives that they had been ignoring for far too long and decided, it’s time to do something about it. Your emails made me realize that if I’m gonna talk the talk, I gotta walk the walk, and so, I decided to make my health a full-time job. Physical therapy twice a week. Yoga and stretching, first thing when I wake up, and last thing before I go to bed. Long walks with Bowie every single day instead of letting someone else walk him for me. And exercise, especially on the days that I don’t want to. Accepting that, sometimes, being late to work in the morning is a necessary component to my health. Realizing that I need to push things to make room for physical activity in my life. Learning to close the laptop at the end of the day, get off my ass, and go outside. Experimenting with autoimmune diets and natural sleep aids. Listening to my body, and hearing what it has to say. And after all that? I feel okay. *laugh* I feel okay. I still have a baseline of pain, most days. I have days where I’m stiff. I have flare-ups. Some days, I just don’t sleep, and the fog is certainly not entirely gone. And in truth, I don’t know that I’m ever gonna fully be a hundred percent again. But I am done ignoring my pain. I’m sharing this all as a way to show that, treatment is not an upward trajectory. It goes up, and it goes down, and with luck, it goes back up again. It’s a bumpy f*cking road. I have A.S. for life. There’s no day where I get to ignore my treatment or stop my physical activity. This is it. This is it. This is my life. But this is my responsibility. And how I respond now decides the rest of my life, and I decide that I’m gonna kick its f*cking ass. That I’m going to continue to prioritize myself and my health. That this is not going to stop me from doing the things that I love to do, and it sure as hell is not gonna define me. Cause also it’s a stupid sounding disease. It’s Ankylosing Spondylitis. It’s a dumb name. I’m not trying to demean it, but like… I’ve got a lot of life to live and, ain’t nothing gonna hold me back. So, my name is Zach and, I’m getting worse. But I’m also getting better. “Eugene, can you open this for me please?” Eugene: “This does not affect your fingers.” (Keith laughs) Eugene: “You’re just making me do this cause you like-” Zach: “Can you feed me?” Eugene: “See?” Keith: “Is the seaweed helping?” Zach: “Mhm.”

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Comments

  1. I feel you man, Im on my last leg with Lupus…..every day just gets harder and harder for me but Im trying damn hard to keep going…

  2. Thank you for this video, and for talking about your autoimmune disease. I'm not diagnosed with anything, but I've been struggling with a lot of pain and it… sucks. It really sucks. I hope that I'll eventually be able to figure out what's going on and start to get some form of treatment, and honestly, videos of people talking about their journey with chronic pain gives me hope that it will be okay.

  3. Literally so sorry had my son had to have a blood transfusion acquired a gastrointestinal virus. Non diagnosed yet. 16 years later. I feel like I have colon cancer because it's so horrible. They are only seeing it now bcs I lost 45 pounds

  4. “It feels like you’re deteriorating on the inside but have nothing on the outside to prove it” I felt that

  5. Oof. I have dysautonomia. Not as bad as some, but it’s an invisible illness that makes you feel fatigued 24/7. It’s fucking annoying.

  6. I also have a chronic pain condition that as of yet doctors have been unable to diagnose. I definitely relate to “baseline pain”. Unfortunately I can’t go out the house any more because pain is a constant.

  7. ”Having an invisible illness is just that, it's invisible, you feel like your deteriorating on the inside, but you have nothing on the outside to prove it” it's so true, people see me as a normal 14-year-old girl, but I can't stand for more than ten minutes without passing out, or dislocating hips, knees, ankles, or any other joint, or throwing up in public and people thinking I have an eating disorder, when in reality my stomach is paralyzed, and my body has a complete lack of collagen because my genes don't have the code to make it.

  8. hi Zach I have fibromyalgia I understand you're invisible pain my baseline pain is a 7 and has been at 7 for a very long time I am 33 years old being pregnant was very difficult my son is 2 I have been on several different I understand your paincurrently my legs are messed up and I'm in physical I understand not feeling normal I would give anything to be normal it sucks not feeling well but I believe there will be something someday to help us if I keep the hope keeps me

  9. I, too, have an invisible illness. It can be very hard to deal with pain when people don’t believe what you’re going through. It’s hard when you’re young and others don’t understand why you can’t go do things the same way they do. It’s hard to see someone else go through all this pain.

  10. For anyone with a chronic illness: check out Dr. Goldner’s green smoothie diet. She used to have lupus but is free of it now because of it. I have lupus and I can guarantee that it’s worth a try. <3 She has webinars every other month and a book.

  11. I’m with you! I have a chronic condition that also sounds dumb. Nervous stomach disorder. I get sick whenever I am over stressed whether that stress is positive or negative. I too, have meds that help but I still have a baseline of pain and discomfort. You have inspired me to never give up and to acknowledge that I have this condition and I can live my life such that it doesn’t kick my ass. Thank you for this video. Thank you for everything you said. Thank you.

  12. Try a Temperpedict Bed (something like that)
    It’ll help ur back! It’ll take shape of ur back and will reduce pain. And a temperpedict pillow to reduce stress on ur neck and upper back

  13. This was so nice to see I recently started experiencing really bad iron deficiency in my blood every time I loose much blood… it makes me pale, inactive / constantly energy drained so that’s fine BUT I have nosebleeds 2 or 3 times A DAY… it’s giving me a slight eating disorder because I’m not active so I don’t wanna eat… I don’t know what to do! If you see this ANYONE have you got any advice???

  14. I feel this 🙁 I have crohn's and it kills. I'm exhausted, I cant eat as much as I would like, medications make me gain weight and sick, I dont remember not having pain. The meds helped amazingly in the beginning, but now they dont as well, and no one believes me. I look fine.
    How can I be so tired? I slept so long! I dont look sick, why am I taking time off? People try to help, but I promise you I have tried everything. Yes I tried that weird diet, I'm glad it worked for your aunt it didnt for me. Yes I know diet helps some, exercise helps some, gluten free, dairy free, nut free, helps some people. Not everyone.
    My inflammatory markers look great! But I'm in so much pain.
    Chronic illness sucks. I hope you can win, we never get a cure, but you will win.

  15. Hi Zach, please look into the Medical Medium. He talks about autoimmune disease (all of them- and the root cause). I think the information can really help you

  16. I was diagnosed at 22 with AS. I'm now 26 and just now getting worse and I feel this!! I cant sleep and when I do in the morning I cant get out of bed. I work full time and i dont know what it's like to not be in pain. My husband finally just understood that I dont feel normal but he sees me as normal.

  17. If you’re told to exercise and you..proceed to not do that you honestly shouldn’t be surprised when pain comes back because it’s literally your fault.

    And you can chalk me up to a hater if you want but I have a variety of disorders and diseases, and I also know that you do what your doctors tell you whenever physically possible.

  18. With my Arthritis, Asthma, Migrianes; etc. Antiinflammatories, I've used before are:
    Moringa, Golden Milk, and oh yeah eating spicy foods: Indian, Mexican; etc. Also using Icy Hot too. Yup, I too need to become more physically active as well. For that you inspire me too, so I can manage my inflammatory diseases-thanks.

  19. Ok is what you make of it! Cheesy but so far as I'm aware you only get one life. I'm getting worse too but I don't much care, looking after myself is my first job and since I got over that things have been simpler. What a charming, clever video.

  20. What's harder than being sick, is affording it 🙁 that's what stops me unfortunately. You are in a luckier position than some. I wish you well on your journey and I hope that this is never a problem for you. Being sick is more than enough of a problem! Take care!

  21. I'm sorry my dude 🙁 that's horrible. Honestly try to make the most of life while you can and make good memories that make life more worth the pain <3

  22. Something to try before bed (after yoga) could be electroshock therapy with a TENS unit. It activates your muscles in targeted areas and feels like a massage. You could try it for content, too.

  23. I know this is very controversial but I think Zack should try medical marijuana I know many people that use it for chronic pain and they say it takes away the pain and allows the to sleep better at night

  24. Life of living with a chronic condition, but it's only a "doable" life when you don't do everything you can when you can.

  25. Thank you for this video. I have just been diagnosed with hypothyroidism caused by Hashimoto's Disease after finishing treatment for Hodgkin's Lymphoma and felt every word you said, and although it sucks there's so many people who suffer every day from these autoimmune conditions, it's also a comfort to know I'm not alone, as it's the most isolating thing in the world suffering each and every day without and relief or break in the symptoms. Hugs and love to all the autoimmune warriors out there xxx

  26. Shit Zack this vid was deep, honestly I and everyone else related to this video in some way your so brave for excepting it and concouring it.

  27. You do look ok, you make me question my own discomfort. Maybe I am toughing out something I don’t have too. I should see another doctor. I hope you have found a way to deal with this since it’s been a year since this was posted. Thank you for sharing.

  28. Part of having autoimmune disease, it's a lifelong process. It is very important for you to adhere to your treatment plan as the moment u stop it, that's when the inflammatory process occurs. Apart from medicine, exercises also play an important role.

    Talk to your Dr. You are very lucky you live in the part of world where biologics are easily accessible. Unlike us who live at the other side of the world where medicine is sometimes a privilage.

    Good luck. Its not easy but you dont have to face it alone.

    Dr hazwan from malaysia

  29. I do the same thing with my mental illness. I take my meds and ignore the other things I need to do and if i start to not exercise or not see a therapist i spiral out of control. You can be on a super high dose of meds but more goes into it!

  30. I have a terminal brain cancer called DIPG and this video just gave me so much hope and so much drive. Thank you so much, Ned for having the courage to share your story.

  31. My dad has a very similar disease. His bones just degenerate rather than grow but listening to your pain and treatment it’s pretty damn Identical in nature.
    Thank you for speaking on this, I’m gonna send him this as encouragement.

    Also like others have said. Swim more. It helps him more than most things.

  32. Are you still on humira injections or have you lowered the frequency to use them? My mom has AS as well and she’s doing really well. The key to living a happy life with AS is maintenance.

  33. I a double curviture in my spine where the two curves meet the vertibra is being crushed.
    Like you I live with chronic pain. I am now on pain patches which cover the base pain which means I'm active how ever I know when I have been active as my back and hips hurt like hell. So I take a rest day or two depending on my body. I have learnt to listen to my body and work with it.
    Dose it annoy me? Yes.
    I use to dance I use to horse ride but then my hips gave and then my back.
    Im a 40 year old trapped in a 90 year olds body.
    Thing is not to give in or allow it to run your life. By all means listen but don't allow your body and pain to dictate your life.
    By the sounds of it you have reached the same place im at. Living with it but not allowing it to win.

  34. I almost died from Epilepsy. Epilepsy almost owned me. Man you can do this. Some things are an everyday battle. We will continue to win! You got this!

  35. You should try eliminating all grains. I have been in total remission for 4 years now due to eliminating all grains. (EVERY GRAIN).

  36. This is such an encouragement. I have a massive herniation of my c5/c6 disc that the doctors thought would resolve… Two years later and it hasn't. I've been recently gone through the same thing, having gotten complacent with my treatment, mainly because I felt like I was, "Too young" and "didn't deserve this." So as symptoms began disappearing, I resumed having poor posture, not taking medications and eating what I'm supposed to etc. In the past couple of days I had the worst flare up I had had in a year. I couldn't sleep, because the fasciculations woke me up, and the symptoms imitated ALS and/or Parkinsons, driving me crazy. The stress of it all has wreaked havock on my entire body, because I'm letting the fears get the best of me.
    Thank you for this timely video. It's good to see other young people with chronic illnesses keeping a positive attitude, and ACCEPTING their symptoms without letting them define them. Just thank you.

  37. I'm glad you are taking your disease seriously. I did not. I had been diagnosed with fibromyalgia. I also am aging, overweight, and I hurt all. All. The. Time. Then my hip broke. I have cancer. Metastatic breast cancer. In my bones. Long enough to have eaten through my femur and almost closing off my spine. Now I do take care of myself. It makes a big difference. I am living with cancer, not dying from it. Keep up the fight. Tell others how you feel. Be compliant with your doctor's instruction. And keep away of all forms of woo. Woo kills people.

  38. I have APS( antiphospholipid antibody syndrome) with factor 5 Leiden. It's a blood clotting disorder…. i thought I had it undercontroll …. till lately where just like you I tried to ignore it till my systems start to come back… my left leg swelled so badly I thought I had blood clot break off… since then i have been wearing my compression stocking and made a appointment… We live in a world where people think "oh well you dont look sick" and when i hear that it breaks my heart because most illnesses lie inside the body and isnt seen but is more felt. Anyways what im saying is this world is so busy all the time the we forget to stop and take time to focus on our selves. We only have one body and we need to focus more on keeping ourselves more healthy and intune with ourselves. Thank you for making this video.

  39. Zack, as soon as you started describing what it's like to have an invisible illness it made me emotional because I deal with an invisible illness called Short Gut Syndrome and I feel the exact same way.

  40. I am sitting here watching this and I TOTALLY understand what you're going thru. I have five autoimmune disorders. Everyday I have some form of pain, severe itching, fatigue, brain fog. And it takes a toll on you mentally and it takes a toll on your relationships. And because others think you look "good" they think you're full of shit and lazy. And……I'm not trying to be a know it all……..but you need to get tested for other autoimmune disorders. Because they do cross over into each other. I'm sending you positive vibes, good health. And thank you for talking about any autoimmune disorder. You also need to apply for FMLA to protect your job. And you may want to explore applying for disability. I would be more than happy to help you with any questions. Feel better buddy! Michelle

  41. You should try the Specific Carbohydrate Diet. It avoids certain types of starches and is reportedly very effective against further deterioration.

  42. I also struggled with an autoimmune disease and chronic pain. I changed my diet and now have no symptoms and take no medications. Consider holistic solutions 😊

  43. Hey brother, my dad has what you have. He takes a medication called Embrol, I think it is expensive but it saved his life. You should look into it.

    Also, don't be afraid to try CBD jt has healing and antiinflamitory properties

  44. I watch a lot of people with invisible disabilities here in youtube and probably all of them experienced being told that there's nothing wrong with them. It's sad…

  45. I completely understand how frightening it can be.

    In 2016 I was 24, and I was officially diagnosed with the autoimmune disease, Lupus. Most the joints in my arms, hips and legs were in so much pain. When I woke up in the morning I couldn't move my hands and couldn't raise my arms above my head. I would literally have to physically open and close my fingers just to get them working properly, and I'd have to walk my hands up a wall just to get my shoulders working somewhat. The simple act of putting on my clothes left me in tears. I had lost 2/3 of my hair, a butterfly rash had appeared on my face from one cheek over my nose to the other, and my feet felt like they were on fire.

    Luckily, thanks to my doctors and the meds they gave me I have am now pain free, my hair has grown back and the rash is 99% gone. But, I still deal with fatigue. Since Lupus is a disease where my immune system targets my organs like my liver and kidneys as well as any dangerous pathogens, I get tired often, for no reason, and without warning.
    I am constantly on the look out for signs that my lupus has acted up again, because their is always that fear that the terrible joint pain will return as well.

  46. That’s why you’re a try guy. You can never stop trying. whether it be trying to overcome or accept or treat or fight or challenge or prevail. Life is all about trying. Wishing you happiness and most importantly, health ❤️

  47. Check out the PEA supplement. It has studies that came out this year that helps with inflammation and brain fog. Amazon it's fairly inexpensive

  48. Thank you so much for this. I can relate fully. I've been told I probably have MS, and as much as I want to try to forget about my symptoms I need to make sure I keep working on my health.

  49. 1. Re: you saying that the disease has a dumb name? Ankylosis sounds very similar in name to the Ankylosaur, which was a pretty spunky, bone-plated, stubborn little badass, if that helps.

    2. I was just curious if you’d considered the possibility of adding cannabis to your treatment plan to help with the pain and the lack of sleep. Cannabis helps me a lot with my mental health (and some of the physical manifestations of it) which I know isn’t even remotely the same. But Indica plants have been helping my step-dad a lot with the pain of his cancer treatments. Still not the same, I know. But I’ve also heard people speak of how it’s helped with their invisible physical illnesses like Lupus, Fibromyalgia, Arthritis, etc as well as aiding their mental health that suffered from being in constant/nigh constant pain.

    Not here to offer unsolicited advice, I swear. Like I said, I was only curious if you’d ever considered cannabis in addition to your overall treatment plan.

    I’m so sorry you’re having to live with this. I can’t even imagine what that must be like. 😞 But good on you for tackling it like a total badass!

  50. I started crying when he was recording how much pain he was in when he woke up in the middle of the night

    I’m glad he started doing stuff about this and he’s better 🥺💕☺️

  51. I hate when doctors say you’re fine and have no more answers or just stick you on the next medication hoping that one works. I felt that when you said deteriorating on the inside and looking fine on the outside. I suffer from severe migraines and I’m still looking for answers from being in pain every day and some days I’m just sick of searching for treatments or ending up in the hospital again. Stay strong Zach and you’re such an encouragement to keep pushing on with lifelong illnesses

  52. I understand you Zack, the worst part of having a painful diseasse is that nobody sees it and you don't feel normal.
    You are braver than anyone. This is a chance to change your diet your hobbies and everything depends of having this mentality: fuck you pain I'm gonna live like I want! You can't defeat me!
    I send you a Lot of love and understanding, a Kiss and a hug for everytime you can't finish a simple work and an aplausse for everytime you get up and live

  53. Thanks Zack. I was diagnosed with an extreme version of Eczema all over my body and it took me over for months. I was in constant pain anytime I moved, I am hairstylist so I can't help but move. I didn't sleep because I would up all night scratching in pain. I found out its actually closer to a auto immune disease than anything just because of how my body attacks things. But thank you it really does help, I too am getting better at not ignoring my health.

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