There’s something to be said about leaning into myself as an adult and actually, finally, doing what is best for me and what is healthy for my soul. When we’re growing up, we don’t get much of a choice of who is in our lives, what they say to you, how they treat you, the type of energy you accept into your realm of existence and how much or how little toxicity is in all of that. Toxic doesn’t just have to be in the chemicals you use.
As we grow and mature, we stumble through toxic relationships, toxic jobs, toxic family members, toxic self-talk, toxic food or medications for our bodies, toxic chemicals used in our households, and more. But the true beauty comes when we emerge out of the other side of the heaviest parts of that growth. The beauty comes when we realize what we’re willing to live with and what we’re willing to live without. The toxic pieces that we just deserve better towards.
I’m not perfect. I have a long way to go to really get what I consider to be toxic out of my life. There’s a lot of toxic self-talk that still happens on a daily basis (I’m working very hard on this one daily though too); there’s a lot of toxicity in what I allow certain individuals in my life to say to me (this one is harder, but still working on removing a lot of this); and sometimes there’s still too much “toxic” I allow in my body as well. But on the other hand, I’ve done a hell of a lot of hard work to remove a great deal of toxicity from my life. And I’m here to tell you what I’ve learned about this so far, and what we all need to be repeating to ourselves on a daily basis.
If you’re wondering if those examples above are real, YES. They are. I’ve heard every one of those before and far more of them. From close family, from old relationships, from bosses, etc. Not one of those comments is okay. Not one of those should be tolerated or accepted. Every single one of those comments is a dig, a stab, a cowardly hide behind a “well-intentioned” viewpoint. If you think they mean well, don’t fall for that – you’re making excuses for them. And guess what: I’m yelling that outloud for myself just as much as I am telling it to you too.
Be unapologetic for yourself. We all have faults – but there’s no beauty in toxicity. Sometimes I think I’ve tried to focus on fixing the toxic pieces or things or people in my life. But here’s the real talk: you can’t fix toxic and that shits not on you, girl. Not your responsibility. Or my personal favorite: not my circus, not my monkeys.
Toxic isn’t something that is going to magically transform into this natural, healthy, nurturing entity in your life. No. Cut that shit. Removing toxicity is the only way to cleanse your body, cleanse your soul, cleanse your mind, CLEANSE YOUR LIFE. You don’t have to cut out the toxic things in your life forever, but until they prioritize the work on themselves, you don’t have to ride that journey with them and experience the rollercoaster yourself.
I still have some heavy work to do here. No one is perfect – but even just putting all of this out here on paper — er, the internet — helps me to breathe it into existence. I’m feeling more motivated than ever to remove these things from my life. There are so many beautiful things in my world – my career, my husband – and the love in both of those things is SO overwhelmingly NON-TOXIC that it settles in my soul like a warm cup of tea, a good book, and a warm blanket on a cold day. It’s home; love: my food for the heart, the head, the soul.
If you are dealing with a toxic family member, find yourself in a toxic relationship or job, or something of the sort – remember this: you can do hard things. You deserve better. You don’t have to stand for this bullshit – and you shouldn’t. Wrap that hair up in a topknot girl, throw on some pump-up jams, and take care of your shit. You’ve got this. ❤️
It’s probably not the one you’re thinking of, I promise. What I want to talk about is what a lot of people both get sucked into and have probably also noticed about the chronic illness community if you’ve spent any time around the online community. But first, it’s so important for me to put a heavy disclaimer on this post and on my thoughts and opinions around it.
*Disclaimer: This does not in any way mean that all views in the chronic illness community are like this (not AT ALL), nor does it downplay any legitimacy. This just sheds light to a trend I’ve seen and shares a point of caution.
SO, with all that being said. Let’s talk about the trend of my least favorite 4-letter curse word. CURE.
When you spend a little bit of time within the online chronic illness communities, you’ll notice a few key things straightaway:
Don’t get me wrong, none of the above is meant to make fun – but it is meant to *somewhat* exaggerate so that you get the idea of what is out there, of both sides of extremes (because the above two examples actually exist in real life, I’ve personally seen them both on a daily basis). And don’t even get me started on the new fad that is “sickstagram.” All these late teens/20-year-olds – it’s not the cool thing to have multiple, debilitating, chronic illnesses. For all the legitimacy that still exists, I’m so sorry – I hear you, and I’m there for you. I’m just not sure when it became cool to be bedridden, with tubes, or drawers full of medications, weeks full of doctors appointments. But I digress.
What I really wanted to bring to light was the danger of the word: CURE. There is a big trend out there of sharing ways to “cure” your chronic illnesses or autoimmune diseases by diet, exercise, supplements, etc. Let me start by saying, please don’t confuse me shedding light on this as being equal to me disagreeing that diet, exercise, and some supplements are good for you. They are! And with proper medical guidance, you should be incorporating those into your treatment plan. However, they aren’t going to “cure” you. If autoimmune diseases or chronic diseases were currently “curable,” modern-day medicine would be shouting those claims from the rooftops.
Now you can certainly manage your symptoms and, potentially, put yourself into remission with homeopathic methods. That’s fantastic! I’m all for it. But remission is not “curing” yourself. Remission is a goal for all of us, but don’t be fooled that remission can’t be taken from you in an instant. I am a FIRM believer in the middle-ground. I am a FIRM believer in modern-day medicine + homeopathic medicine. It’s how I address my health issues, autoimmunity, and my chronic diseases on a daily basis. I am the first to try most things, but believing I will be “cured” by them would be naive.
All of this is not to say that I think we should all be negative and mope around in our illnesses all day — far from it! But on the other hand, I think it’s very dangerous to be touting you’ve been “cured” when so many others either 1) won’t have symptom relief from the same resources you used, 2) will think that a “cure” is an attainable and realistic goal, or 3) may go off of doctor-prescribed treatments and do unintentional harm or long-term damage.
Here’s where a smart online community comes in – where you have to be smart enough, brave enough, savvy enough, to challenge what you read. To consider the source, to do your own REPUTABLE research. If what you are reading is only one sided, and to that affect very extremist on one end of the spectrum or the other, that should be an enormous red flag to you. Find a community that is full of patient advocates that support a variety of different treatments and ideas.
At the end of the day, who am I? I can’t tell you what to do – I can only share what I’ve learned and what I see. But I can also tell you I have tried A LOT of different treatment ideas. I can also tell you that I have seen way too many people in devastation because they thought that treatment A was supposed to “cure” them because so-and-so on Instagram said so.
Remember when the tried and true advice was Everything In Moderation? Guess what – that is still the best piece of advice. Follow it. 😊
I could start out this letter to you by just throwing a couple middle fingers in the air and saying “f*&k you.” I could do that, and on a superficial level, I probably would do that as a first step. In fact, for a long time that’s really all I wanted to say to you – and some days, it’s still all I want to say to you. But overall, there’s a lot more.
You have been something I’ve felt both physically and mentally, all my life. But not much more than the average person experiences you — I was sick a lot as a kid and adolescent, but everything else and all my other experiences with you were pretty normal.
No, it was really right after college when we met each other and became acquainted as adults. It was then that I learned so much about you, Pain. The breadth at which you could enter into my life and ooze yourself into every nook and cranny was impressive if I’m honest. Your all-encompassing persona was a little obnoxious and overbearing, don’t you think?
I’ll admit, it took me awhile to work through the stages of grief at your arrival. At first, no one, not even you, Pain, was going to tell me that things were changing, that my life would get flipped-turned upside down (90s’ kid shout out!). You think you’re going to waltz into my life at 23 and just flip tables and go nuts? I think not. That phase was a fun mindf*&k to transition into. Because quickly afterwards came grief and acceptance, but not without some hard work.
Being that ever so overwhelmingly self-aware person that I am, I pretty quickly realized a couple things about you, Pain, and about what our relationship was going to be like:
The best thing I could have done for myself at that time was exactly what I did: throw myself into therapy and learn how to deal with these cards I was dealt. Pain, if you and I were going to live together and be in a committed relationship, some boundaries needed to be established, and some real talk acceptance needed to be learned.
Years of hard work landed me where I am today and how I feel about you now. Our relationship has grown, evolved, and ultimately settled into a comfortable companionship over the years. That’s not without discomfort; after all, we are talking about you, Pain. However, I think we have a mutual respect for each other now. And on the worst days? I can still credit you and think of you with an inkling of positivity.
You see, Pain — I’m actually eternally grateful for you. You’re a real piece of work, but you’re my work. The evolution of my early adulthood from an invincible college grad to a vulnerable, defenseless young professional and multiple chronic diseases fighter is something I look back on with awe, gratitude, and a hell of a lot of grace and respect. I have no doubt in my mind I would have turned out well without you, but I’m pretty damn grateful for what and who I turned into with you. In fact, it’s best said by the tattoo I got down my spine: Pain from today is Strength for tomorrow.
I applaud you, Pain, for your perseverance in my life. I’ve thrown the book at you with treatments and procedures and medications, and you allow yourself to be tampered down, to play second fiddle to the rest of my life. Nevertheless, you sneak yourself into my world just enough to keep me humble. One of my favorite qualities is my strength, my perspective on chronic illnesses. I owe a majority of that maturity and perspective to you, old friend.
So thank you for being what I needed in my life to transform me into the person I am today. Thank you for keeping me humble — just when I think I have you figured out, you knock me on my ass again just to stay relevant. Thank you for preparing me and giving me a perspective that helps me view the world with both grace and realism. And best of all, thank you for forcing me to take stock, to prioritize the right things in life, and to forever work towards balance.
I love you. I hate you. I respect you.
As I was sitting here brainstorming some more upcoming blog content and topics, I had some serious nostalgia vibes for my old LiveJournal days! I’ve tried to find mine so many times. LOL — I used to do these “surveys” all the time there in middle school where it would ask you a bunch of random get to know you questions. I’ve always loved answering those, and I’ve loved reading them about others! Maybe it’s just me and maybe this post will be super boring for all of you, haha. But it will at least be something different and fun to fill out!
1. What’s your favorite candle scent? Oh hands down, anything cinnamon or apple cinnamon scented. Not just candles either, usually my favorite scent for anything in the home.
2. What female celebrity do you wish you were related to? Hmm.. I don’t think I need to actually be related to anyone, but I would want to be friends with a few boss babes: Sia, Kristen Bell, Ellen, Amy Schumer, and not celebrities, but a whole list of influencers who I feel like they are my friends but I would love to be actual friends with, haha!
3. What male celebrity do you wish was your brother? Like the above, we don’t need to be related, but I would love to be legit friends with Jimmy Fallon, and Trey Kennedy. SO Hilarious. Twenty One Pilots. Tim Allen. (There are so many though)
4. What’s your favorite thing about marriage? (And if you’re not married, what’s your favorite thing about being single?) Oh gosh, so many things. We’re only 8 months in but I absolutely love being married. I think the biggest thing though is just knowing I have a forever partner and cheerleader in my corner. J is the best husband and the best friend – he is always in my corner, always cheering me on and supportive. Having that partner who is 1,000% there no matter what to depend on is so freaking awesome.
5. What’s one thing you own that you should probably get rid of, but just can’t? There are probably so many things – one thing I can think of is my wedding bouquet. It’s still sitting in a jar on top of our fridge. It’s hella-gross and dried and I cannot bring myself to throw it away! Other than that – I have a few pairs of comfy pants with many holes in them that are definitely not suitable for leaving the house at this point, but they are so worn-in and soft that I can’t bring myself to throw those away either.
6. Can you do a split? HA! That’s cute. No. I can barely sit cross-legged. My hips don’t even extend their full range anymore. Arthritis is fun.
7. How old were you when you learned how to ride a bike? Hmm.. I want to say 4 or 5 but I’m honestly not 100% sure. I think it was when we moved into our house after it was built and I was 4 then, going on 5.
8. How many oceans have you swam in? Hmm… 2, I believe! Atlantic and Pacific.
9. How many countries have you been to? 4 – Obviously the US; Also, Canada, Nicaragua, and Brazil
10. Is anyone in your family in the army? Nope!
11. What was your favorite TV show when you were a child? I loved Rugrats. I loved The classic 90’s Nickelodeon cartoons around that time.
12. What did you dress up as on Halloween when you were eight? Hmm – what was I when I was 8. My memory is horrific if you haven’t caught on to that by now. So that was third grade — pretty sure I was a either a rockstar or Jasmine. Jasmine was likely too young, but you’re welcome for that photo below any way. 😉
13. Have you read any of the Harry Potter, Hunger Games or Twilight series? Any and all!You’d be hard pressed to find a popular (or unpopular) book series that I haven’t read, haha.
14. Would you rather have an American accent or a British accent? British, but probably because it’s what I don’t have so it would be fun to have something different!
15. Have you ever taken karate lessons? Nope! But I always wanted to! Maybe I’ll take self-defense classes one of these days; I think that would be a really awesome skill to have.
16. Do you know who Kermit the frog is? Um, yes. This seems like a super random question, ha!
17. What’s the first amusement park you’ve been to? I would say probably Disney World when I was 4 or 5 — other than that, I know I went to Cedar Point when I was younger and Bush Gardens. But I hate rides and there’s a hilarious story of me on what is likely the equivalent of a kiddie ride, yelling/screaming for my daddy, except he was working and not even with us during the day (it was my brothers, my mom, and their friends and their friends’ mom) haha. My mom remembers trying to stop the ride by yelling to the guy every time we’d spin around to that side of the ride. LOL — scarred me for life apparently. 😉
18. What language, besides your native language, would you like to be fluent in? Probably Spanish just because it would be the closest next language to learn for me given that I’ve studied it the most. It would be really cool to learn Swahili, Mandarin, or French, but I have the most extensive background with Spanish.
19. Do you spell the color as grey or gray? Hmm — I’m pretty sure I spell it as gray.
20. Do you know triplets? Not triplets personally but my brothers are twins!
21. Do you prefer Titanic or The Notebook? Oh gosh — classics! I really can’t choose – I absolutely love both of those movies.
22. Have you ever had Indian food? I love Indian food! Although I’m a huge wimp with spicy food and I have a very bad case of GERD so I don’t really eat it often anymore unless it’s a mild or not very spicy option.
23. What’s the name of your favorite restaurant? Basically anything local, farm to table in Grand Rapids (Michigan). We have such a gem of restaurants in our city (and our State as a whole) that sometimes I want to protect them and make sure we don’t get overrun by tourists! That’s #PureMichigan. 😊
24. Have you ever been to Olive Garden? Many times! And I still do. Judge away, but I love me some salad and breadsticks from Olive Garden. We still go there on a regular basis with my husband’s family.
25. What would your parents have named you if you were the opposite gender? I’m not sure about opposite gender, but I do know that my parents almost named me Kasey! (Or Casey, not sure if it was going to be with a C or a K)
26. If you have a nickname, what is it? Peanut, Monkey, Krissy. Peanut: mostly from my Dad or the rest of my family. This was from when I was a baby and super little. I slept with my arms and legs tucked under me and butt in the air looking like a little peanut. Monkey: occasionally from my husband, we also call one of our cats Monkey — not sure how I should take that actually. Haha! 😂 Krissy: from my Dad, shortened of Kristin. ❤️
27. Who’s your favorite person in the world? My husband! I don’t get sick of him, I’m sure after 30 years of marriage I will, but since we’ve been married less than a year, I still adore being with him every second. 😊
28. Would you rather live in a rural area or in the suburbs? Rural for sure. There is nothing I want more than for J & I to be able to afford a piece of land, far away from neighbors, surrounded by trees.
29. Can you whistle? Eh, moderately so but nothing to write home about.
30. Do you sleep with a nightlight? No, I can’t. Needs to be dark!
31. Do you eat breakfast every morning? No, but I’m trying to be better about that. I’m a lot better than I used to be. If it’s not a substantial breakfast, I at the very least usually have a matcha oat milk latte and a protein shake. Those are my go-to’s during the work week. On the weekends, we have larger breakfasts of smoothies, pancakes or waffles, eggs, or something else.
32. How many times have you been to the hospital? HA! This year? Just kidding, but seriously. I grew up being kind of a sick kid – and if you know anything about me you know I have multiple chronic illnesses. I would say I go to the hospital once or twice a year in a good year. This past winter/spring wasn’t great and included 8 times in 4 months. I would honestly say it’s probably between 75 and 100 if I had to take a guess. I have had a few times where I was very sick. And I’ve also had a few major surgeries.
33. Have you ever seen Finding Nemo? One of my favorite animations! And if you’ve seen pieces of one of my husband’s tattoo sleeves, you’d know it’s one of his too.
34. Where do you buy your jeans? Old Navy, hands down. So comfortable, always long enough, always high rise enough, tons of variety, not a million dollars. <— very important because I’m not a huge fan of jeans.
35. What’s the last compliment you got? Hmm — good question, I think it was earlier this morning from my husband: “I want you to know I think about you every day and how grateful I am that you are in my life.” I know — I’m desperately in love with him too. 😍
36. Do you usually remember your dreams in the morning? Actually yes! I usually have about 2-5 minutes where I remember the overall gist of the dreams, and then it’s gone. But sometimes, and by sometimes it can be as often as once every week or two, I get a dream that sticks with me so much that I actually have to stop and think throughout the day to remind myself that it wasn’t real and that it was, in fact, a dream.
37. Favorite beverage that isn’t water? Matcha lattes, or iced tea.
38. How many pairs of shoes do you currently own? Hahaha, too many but I did recently clean out my closet and get rid of the really old junky ones. I probably have 25 pairs now, give or take a few.
40. What is one food that you used to hate but now you love? Hmm, I used to be pretty dang picky but there are only a small handful of foods I don’t like now. I would say one that I love now and really hated before would be Brussel Sprouts. SO good.
39. How old were you when you found out that Santa wasn’t real? Hmm, I’m not sure I remember how old I was. I remember I finally figured it out because I recognized my parents’ handwriting on the gifts under the tree that said Santa. Maybe 8 years old if I had to guess?
41. What is a weird lie you’ve told? I remember once that a friend and I in high school bypassed a stoplight by going through a shopping center (yes I know now that this is illegal) and we got pulled over by a cop. We told the cop we were returning a movie rental, and we obviously weren’t. Big surprise the cop knew we were lying and called our parents. LOL. Needless to say we learned an important lesson that day. 😂
42. Heels or flats? Flats — maybe wedges if I’m feeling self-destructive. But again, hello arthritis.
43. Do you have any weird phobias? I don’t think I have weird ones really — spiders/any bugs, heights for sure, or maybe this next one is weird, I really can’t handle raw meat. My husband cooks all of it for me even when he doesn’t eat most of it.
44. What is a phrase or word you always say? I say for fucks sake quite a bit, and like a typical Michigander or Midwesterner, I say Ope or Ope excuse me allllll the time, haha.
45. What is a song that you blast or belt out when you are alone? Literally all songs. It’s one of my favorite things to do: belt out singing anything when I’m by myself or driving in the car. 😂
46. What is one of your biggest pet peeves? I hate liars, I hate loud chewers, I don’t like inconsistency in labeling or titling things, I hate when people stop walking in the middle of the sidewalk in front of everyone. There are so many more but listing everything would just make me look cranky. 😉
47. Do you sleep with your closet door open or closed? Closed, but mostly because we keep all closets closed so we don’t have wandering kitties. 😂
48. Would you rather be attacked by a big bear or a swarm of bees? Hmm, a big bear. It feels like it would be less torturous?
49. Do you have any weird things you do? This is a tough one — I have a few weird habits I do with organization for work. With to-do lists, if I make a mistake, or if there is a lot crossed off on the list, I have to start over and create a brand new list. I also like one particular Sharpie, in one particular color and point, once the point is bent (because I write hard) and not as fine, I don’t really like to use the pen any more. So I go through a lot of them. I know, it’s wasteful, but I can’t help it! I’m known as the note taker at work, and any one can find any notes in my old notebooks about any project. I keep them all. Okay maybe all of this is weird, haha.
50. What movie could you watch over and over again and still love? Oh gosh – I’m starting to be able to do this with a lot more movies than before because J loves to rewatch movies SO frequently. Probably Love & Basketball, Bridesmaids, Cast Away, Into the Wild, Anchorman, so many more.
What other questions do you have? Favorite blog post types? Anything you want to know about me?
Let’s all take a second to recognize the difficulty that is COVID-19. I don’t know who needs to hear this right now – but it’s okay to not be okay with the state of things – hell, the state of the world. It’s not something I thought I would really ever feel – but even being an introvert doesn’t protect you from COVID-19 wearing on you and making you crave society and human interaction. I am the first to admit that I am 1000% a homebody. My husband and I love naps almost as much as we love each other – maybe more? I kid – but seriously. I am all in on cozy nights at home. Big crowds are exhausting to me. I’m truly a token introvert (not to be confused with shy – introvert ≠ shy). But even I am feeling the strain of this, feeling the strain of day in and day out quarantine.
*HEAVY disclaimer is that I am so blessed and so grateful for what I have and for the situation I am in. I’m so very lucky to not have been impacted to a great extent like so many others.
So what has COVID-19 been like for me so far? I have been self-quarantined since March 11th. I haven’t left my house whatsoever except one time for a medical procedure at the hospital (non-COVID related). We also go on drives weekly but I don’t leave the car during those. It has been 10 weeks, friends. 10 very long, very exhausting weeks. It was pretty much determined right away that I needed to severely social distance and stay home due to all of my health issues. Actually, I wasn’t on medications still (I JUST started a new one! Finally! I’ll do a separate post about that soon) so my immune system was not as bad as normal – but still not good. So I stayed home – and then my job became 100% remote too so everyone stayed home – and then our state (Michigan) instituted a shelter-in-place which we are currently still under. 10 weeks later and I’m not a little over a week into starting my new medications which make me severely immunosuppressed, aka I am part of the high risk population.
The COVID-19 situation has really taken me aback on how I’ve reacted mentally to what is going on. I’ve dealt with anxiety and depression since I was in high school – so it’s been just a regular part of me and something that has been (except for a time or two) extremely well managed and under control. So much so that I have a prescription bottle for as-needed anti-anxiety medication that hasn’t been touched in over 3 and a half years. COVID-19 brought up pieces of my anxiety that I had no clue whatsoever existed.
I’ve always prided myself on being an extremely rational person. I remember being in therapy after I got diagnosed with my autoimmune diseases and even having therapists tell me that I am extremely self-aware; that I can rationalize what I’m feeling in my lowest of lows. And it’s true! It’s actually a somewhat odd feeling – whether I’m sad, or depressed, or anxious, or whatever I’m feeling, it’s almost as if I can step outside of my body and look down at myself and rationalize not only the reason I am feeling a certain way, but the actual truth vs. what my self-consciousness is projecting as negative self-talk. Needless to say, this doesn’t mean I have perfect mental health, just that when I am in a bad head space, I’m usually able to at least recognize it and keep myself from drowning in it or from wallowing for too long.
With my compromised immune system, I have been self-quarantined for COVID-19 this entire time. Though it’s gotten better now, about half way through I started to develop this fear and anxiety about leaving the house and/or contracting the virus. I mean, we’re talking TERRIFIED, folks. J and I would go for a drive to the lakeshore to get me out of the house and I was frozen. No matter if there were no people around the pier or beach or not; I physically could not get out of the car. And my husband is the sweetest, most supportive man in the world. He would never push me, or belittle my worry. He might poke fun a little at my incessant hand-washing (“Babe, you haven’t touched anything but what’s in the house, how are you washing your hands this much, LOL), but he is the best and so understanding.
Another thing that would happen is as colleagues at work would talk about when they thought we’d go back to the office or when the shelter in place would be lifted or when remote work would end, I would find myself so terrified of it and so anxious I would be in tears. Or I would feel angry that others thought the lockdown would be lifted earlier. It was irrational, I knew that, but I couldn’t stop it.
I did finally do a tele-health visit with my doctor as a mental health check-in. It was so helpful to talk through all of it and have her not only validate what was going through my head, but also confirm the things that I should realistically worry about and the things that I didn’t need to fret about as much and were more of a byproduct of my anxiety talking. I also had my anti-anxiety medication changed and updated which is nice to have for those days where it feels harder to rationalize by myself.
Weeks and weeks after all of the above, I’m glad I didn’t push publish on this blog post a couple days ago because there’s a very fitting ending to this recap! After over 10 weeks quarantined at home, I ventured out for the first time to go to Trader Joe’s myself today for groceries. Mentally, I just really wanted to go for a drive with the windows down, peruse the shelves for new items, and stock up on my dairy free and gluten free items as I ease into these new eating habits. I know, #firstworldproblems. I am absolutely recognizing my privilege here. To be able to go to the store and feel anxiety and fear; for this to be the biggest “worry” I’ve had because I am lucky enough to get to protect myself by working from home and keeping my job and quarantining myself. Believe me, I recognize that. Nevertheless, this was a big deal in my world. And this was a very good thing for my mental space and I’m proud of myself for it. I may have had to take anti-anxiety medication when I got home, and washed my hands raw. But whatever. 🤷🏻♀️
One day at a time. It’s okay to feel like this. It’s okay to not be okay. It’s okay to be okay today and not tomorrow. It’s okay to be however you need to be. That was as much for you as it was for myself. 😊
Hi friends, welcome back! It only took me 2 months of lockdown to use this time wisely for updating my blog on a regular basis – more on that in another post. For now, I want to talk a little bit about what I know about the autoimmune protocol diet, and most of all, I want to know what you know!
*Heavy Disclaimer Here: While I respect what the AIP diet has or has not done for you (and I’m thrilled to hear of success stories where you have felt some tangible benefits to your lifestyle and management of your diseases!), I want to preface this post by saying PLEASE don’t send me the “I am CURED by doing x” type of advice. I’m not here for it; that’s not my jam; I don’t subscribe to that kind of medical path. THANK YOU IN ADVANCE! ❤️
Now that we got that out of the way! Let’s talk about AIP a bit.
I have been following chatter about variations of the AIP diet for years now – and I should really say the AIP lifestyle because it’s not really a “diet.” In fact, I have even adopted pieces of AIP here and there over the course of the past 8 years or so. For example – I went gluten-free for almost 6 months to see what impact that had on my inflammation levels and my physical symptoms. I was dairy-free and about half gluten-free for almost a year.
First things first: what is AIP? As with pretty much any topic nowadays, the internet has a hell of a lot of variety when it comes to misinformation about AIP. AND there are a lot of people who want to peddle some magical cure bullshit your way and how they took “5 Steps to Cure Autoimmune and Chronic Disease!” Nope. I’m not about that crap, folks. I can smell your bullshit 50 miles away on that one. HOWEVER, there is also a lot of genuinely reputable and educational information out there as well.
The gist with AIP is that you are almost going through an elimination diet like someone would go through to identify a food allergy. However, it is very restrictive in nature – even more so than the Paleo diet but it does look similar. The idea is that fully eliminating inflammatory foods/ingredients for the first period of time can reset your system and your gut. Then you would go through gradually adding one of the inflammatory groups one at a time to see if symptoms were triggered and/or some groups bothered your system more than others. The inflammatory groups that you eliminate are: gluten, dairy, refined/processed sugars, grains, seed oils, eggs, nightshade vegetable, artificial sweeteners, gum, and nuts and seeds, including coffee and chocolate. Sounds miserable, right? I kid, sort of. 😫
There are a lot of differing opinions about if AIP is a long-term lifestyle diet vs. more of the short term elimination diet style, but there are good pros and cons for both sides. I’m a big believer in the everything in moderation mindset, so I personally think that following AIP has a lot to do with how much it works for you and how much it’s realistic for you. Therefore, I think adapting AIP is at the very least how I will start. My hope/goal for myself will be close to 100% dairy and refined sugar free, and half to 75% gluten free. Everything else in moderation. I would like to start out that way, see how it goes and how I end up feeling, and then see if I should add more to it. I think cutting 5 or more major groups of ingredients or foods all at once is a recipe for failure (or at least my failure – it doesn’t feel maintainable long-term).
Going back to the times where I have done pieces of AIP in the past, I’ve seen a variety of benefits and also no results. When it came to being completely gluten-free, I’ll be honest, I never felt much of a difference in pain levels or general well-being and symptoms. However, when it came to being completely dairy-free, I noticed a pretty big impact on my symptoms and the way I physically felt overall. That being said, I think focusing on being entirely dairy-free and moderately gluten-free is likely what works the best for my body and my lifestyle.
The tough one, the real kicker, my Achilles heel: sugar. I absolutely know the benefits of cutting sugar, of getting rid of all refined/processed sugar in your diet, and of how much sugar is an inflammatory food. I am ALL for it. My willpower has always been a different story. I truthfully believe I have a sugar addiction, 100%. I will always pick sweet over savory; I am absolutely one of those people that crave a “little something sweet” after every meal. So it is HARD, folks. I have tried and failed SO many times on the cutting sugar front. I genuinely wish that I didn’t have such a sweet tooth!
So here is where I ask you for help! What can you tell me about starting to eliminate these groups from my diet – what tips do you have?
I’ll be sharing this on my Instagram Stories and Facebook too and hoping to get feedback, but by all means comment below with your experiences or tips and tricks! (Keeping in mind my disclaimer above 😉)
You know, normally I am pretty mellow and laid back about all of my health issues. After 8 years, I pretty much take everything in stride and I don’t spend a ton of time dwelling on the day to day symptoms or impact. However, sometimes I’m flat out not given much of a choice.
Here’s an update for you that is a tad more serious and involved than most of my other health updates for the past couple years. The reason for that is basically because this health update is culminating in needing a brand new treatment plan at the end of all of this. And realistically speaking, I have been more positively managed symptom-wise than I even realized for the past 3 years.
This all started back at the end of November, early December, of 2019. My last infusion of Actemra was the first week of November. I was due for my bi-monthly bloodwork to check liver levels, disease activity, and inflammation levels at the end of November, coincidentally right before my next scheduled infusion at the beginning of December. That bloodwork is what kicked off this next 4-6 months of what I can really only refer to as a living health hell. We’ve known that Actemra could cause elevated liver levels, but for 3 years and regular checks, I’ve never once had any issues or alarming numbers, until now. That bloodwork back in November was outstanding when it comes to inflammation levels and disease activity – no surprise there, Actemra worked really well for me for 3 years for my Rheumatoid Arthritis and Spondyloarthritis. But my liver levels on the other hand were 2-3x the levels that they should be.
The first response to this was to skip my December infusion and get my bloodwork re-done in 2 weeks. Okay – no big deal, we’ll just take a break and go back to normal in late December or in January. Well, that bloodwork 2 weeks later was even higher for some levels, and no change in others. The next step was getting an ultrasound of the liver and getting referred to a GI doctor – at this point, my rheumatologist wasn’t 100% confident we were dealing with a medication side effect anymore and concerned it could be something else. Cue the ultrasound, fatty liver disease and an enlarged liver to twice the size of normal. Normally when people talk about fatty liver disease it has to do with alcohol and cirrhosis; however, I obviously don’t fall under that umbrella in this case. 1) I don’t drink – like, at all; and 2) cirrhosis is an extreme late stage liver disease. So in this case, I would be considered as Non-Alcoholic Fatty Liver Disease, or NAFLD.
NAFLD can be caused by a number of different factors, like obesity, medications, diabetes, genetics, autoimmune diseases, rapid weight loss, and more. I actually fall under a couple different possibilities – because of my rapid weight gain from steroids 3-4 years ago, the weight plays a role in creating an ample environment for NAFLD to develop. However, because my lifestyle is healthy and my weight gain was not lifestyle related, obesity isn’t the cause and sole reason for my NAFLD. On the other hand, we still don’t concretely know exactly why my liver levels remain elevated and out of whack.
Back to the tests and delayed infusions/medications – I was able to get into my GI doctor in early January, and he ended up having a few different theories. The largest one though, and what we are still “going with” for lack of a better phrase, is a drug-induced liver injury. In simpler terms, that basically means what I’ve been referring to in this entire post in that continued necessity of medications to manage chronic diseases is having adverse impact on my liver function. So what we did was give it another 4-6 weeks to get the infusions 100% out of my system to see if it was limited to the Actemra, or if it was just medications overall, and then re-do the liver levels bloodwork. The GI doctor then recommended – let’s do a liver biopsy after that bloodwork if the levels aren’t back to normal, because that would tell us that the bloodwork might be missing something and/or there could be something non-medication related going on.
Fast forward to about a month ago, and the morning I was due to get those liver levels re-checked in my bloodwork, I woke up with some crazy, severe right side pain. Thinking I could play Dr. Google, I tried to WebMD Symptom Checker my life away. With every search result ending in the same fate, I woke up my husband and described it to him. He was immediately like: “Ummm…. yeah, I feel like we should go in.” If you know him, you know that’s not his usual mojo so I was like, “Oh! Okay then. We’re doing this.” Fast forward to the ER thinking it was either Appendicitis or a twisted ovary (not going to lie, I was 3,000% more worried about the ovary than the appendix. hello! I need that organ way more!). Thankfully it was appendicitis over the twisted ovary, but that meant I went from a 5am painful wake-up call to a oh okay, I’m getting surgery today in the span of about 7 hours.
SO! No news is good news as far as an appendix surgery goes. It went as smoothly as it could have gone and I was in and out of there literally the same day (I know – crazy!). The first few days were pretty dang painful, but then gradually it got a lot better and we are now at about 5-6 weeks post-op and about 80-90% back to normal!
Needless to say, that delayed the original re-check of the liver levels bloodwork about 3 weeks, so I got that done and we saw good news and bad news. The good news was that a handful of the liver level tests came back at a 50% decrease (!!) – woohoo! The bad news was that one of the liver level tests came back with an increase (WTF). So this still leaves us with needing to understand exactly why this is happening, needing to run more testing, and oh hey, yeah over here, yup, I’m still off of all my meds. Cool.
There’s something else that has been happening throughout ALL of this that needs to be mentioned and explained because it has also played a very large roll in my health, my quality of life, and overall the delay of basically everything in finding out more information and getting back onto different medications to find a new “maintenance-mode.” Since I stopped my Actemra infusions back in November, I have gotten sick in some form or another a full-on six times. And we’re not talking like I maybe have a tiny tickle in my throat, we’re talking like multiple bouts of influenza, days on days of 102+ fevers, etc.
Here we go. While I dealt with trying to figure out the liver levels, being off of meds in general and feeling horrific because of that, and then, SURPRISE, getting emergency appendix surgery – I also was dealing with basically spending almost the entire winter ill. It started with Norovirus, then with a Sinus Infection, then with Influenza, then with a Chest Infection, then with Influenza A, again, and now with another Sinus/Head Cold/Respiratory Infection. Out of the past 19-20 weeks, I have spent approximately 10 of them sick with one of the above.
I’m over it, ya’ll. Really fucking over it. And it’s not over, that’s the bad part. So I currently have a respiratory thing/head cold, whatever, and my liver biopsy is again delayed because they won’t do it until I’m healthy again. Doc – I’m not sure that’s going to happen this year! J/K… but seriously.
Should we throw another wrench into the game? Why not, let’s do it, just for funsies. Enter – COVID-19. Now, I don’t need to say much about this I don’t think because the media (for better or worse – probably mostly worse) has done enough of that for us. However, here’s the concern while trying my hardest to remain realistic and grounded on the whole matter.
It’s a whirlwind, everyone. There isn’t a great deal more to say from an update perspective other than to summarize: I’m still waiting to get the liver biopsy; I’m waiting to hear back from my doctors on if I can start my new arthritis meds amid current illnesses and COVID-19; It’s just another day in the life. #chroniclife
If you know me, you know that 99% of the time I really take all of this in stride. I won’t lie – it’s been a really rough winter – every time I turn around I’m sick with something else, or my tests are delayed for another reason. But I also know that there is really nothing I can do about it from a complaining or hating my situation or wishing this wasn’t my life perspective. It is what it is; these are the cards I was dealt. And at the end of the day, I am very privileged; I am lucky enough to be in a better place than a lot of others. I can afford all of these visits to the doctor, the hospitalizations, the surgeries, all these medications and extra tests. I work full-time for a company with an amazing work culture, and have not only an incredible manager and team, but incredible insurance and benefits too. I am beyond grateful for all of that.
That doesn’t mean that I’m not allowed to get frustrated, or feel down about all of this. Believe me, I have my moments, and I do feel at my wits end about the past 4-6 months – I am only human. But I also have always been a realist, I’ve always been someone who is very hyper aware of my situation, aware of my mental status and mental health – so I know how to “check-in” on myself and I know how to make sure I never “spiral.” I’m not perfect, believe me – and I have moments where I lose it and want to scream – but I also know I wouldn’t change this life for a second because of so many other positive things I have.
I’ll keep you posted! Saying hi and checking in on this long over-due update from my “social distancing,” work remote perch, aka my couch!
Throughout the years of being diagnosed with numerous autoimmune/chronic diseases, I’ve learned that it can be a complete mind-fuck. Sorry for the bluntness, but it’s really the only way to describe it. What you think is good news is bad news; what should be soul-crushing is a relief; Up is down and left is right and under is over.
They don’t tell you this when you first get initiated into the chronic disease club. They don’t tell you that sometimes you’ll be relieved to get diagnosed with another disease or comorbidity. And they definitely don’t tell you that 7 years can go by and you’ll still be adding to that list of chronic diseases and conditions. That first diagnosis? Hang on kids, that’s just the beginning.
Ever since I first started down this discover journey and diagnosis path of autoimmune diseases, I have been potentially diagnosed with 17 different diseases along the way. Don’t worry — only 8 of them stuck! Ha! At face value, that probably looks crazy, but that’s through a TON of trial and error, a TON MORE tests and scans, and a pretty hefty Rolodex of doctors and specialists.
All of this is to say that I have been working hard on a particular part of my health for years now. Before I was properly diagnosed and had a treatment plan in place, I was on steroids for 3 years. Most everyone knows this story -but if you don’t, the gist is that because my pain and inflammation was so high and so out of control, steroids were really my only option until we ran enough tests and trials to gather enough information and results for a proper diagnosis, and subsequently, proper, approved, medications. During those 3 years, my weight basically doubled from those steroids. So for the past 2-3 years, I’ve been actively trying to lose that weight, with little to no success.
Now I’m not perfect, and anyone who claims they never slip or never eat junk food is either A) lying, or B) a miserable person with too much rigidity. Nevertheless, I eat pretty darn well, I walk about a mile a day, and I follow approximately a 75% anti-inflammatory diet. I’ve tried all kinds of diet programs over the years (nothing fad or extreme because I think all of that is BS), like Weight Watchers, Noom, Dietitians, Nutritionists, Etc. I have never been more frustrated with something in my entire life – I basically have lost as high as 15 pounds that entire time, but either go right back to the same or it fluctuates week over week. I’ve not gained more, and I’ve not lost anything of significance. Seems weird, right? I thought so too – and so did my doctors.
We tried so many tests – adrenal function, diabetes, thyroid, liver function, etc. etc. And I wouldn’t say everything came back normal, but nothing that would have 100% explained the issues with weight loss. So finally, I was sent to a diabetes and endocrinology specialist. It’s funny when everything finally clicks with chronic illness. This has happened to me a couple times along this journey where the stars align, my medical charts have had enough of the right tests and trends, and I see the right specialist – they walk in the door and might as well just say, yup, I know exactly what this is and this is why. That’s what happened this time.
The endocrinologist took a look at the last 5-10 years trending of my test results, weight fluctuation, medication use, etc. and he looked at me and say “Wow, no wonder you’ve been frustrated.” I could have kissed the man – he said, I’m about 95% sure exactly what this is, and we’ll 100% confirm via some blood work, but let’s start trying to work on this. My blood work absolutely confirmed his thoughts, and I was diagnosed with an Autoimmune Metabolic Resistance.
So what does that mean. It’s complicated, but the gist of it means that no matter what diet and exercise I continue to do, my autoimmunity is fighting against my metabolic system’s ability to kick in and help me lose weight. Which now makes it very clear why during the past 2-3 years of me trying my hardest to diet and exercise, I was only able to fluctuate 10-15 lbs back and forth. The fact of the matter is that I am trying to lose about 100 lbs, which is not going to be possible on my own. Now, that’s not to lessen the importance of healthy eating and moderate exercise. That would never be the recommendation and I plan to keep that up if not increase those aspects of the situation. However, I’ll need help via medications, injections, or surgery.
We’re early on in this process. The diagnosis was just earlier this week; but I have started the first medication we are going to try over the next 3 months, so we will see how it goes! I am really hoping that this is the break that I’ve been searching for.
Let’s go back to the title of this post: “When Bad News Is Good News.” Well, it’s always bad news to continue to add to my Rolodex of chronic disease diagnoses. Nevertheless, so much of my weight struggle is now explained. The fact that after being on steroids for 3 years made me almost double my body weight makes me feel so many emotions. But it also makes my body feel so many negative things as well. So this really could be good news. I’m going to call it good news. Yup. Fingers crossed?
Anyway: I’m rambling at this point. I’ll split this into a couple posts and write more later on what else is going on!