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!
I’m no spring chicken. The same arthritis that ate up my left hip that finally got replaced hasn’t stopped there… And touring is a lot of work. I’m impressed when I see people like Eric Clapton out there. Gee whiz, Eric, give me a break! I know it’s gotta hurt somewhere.
It’s that time of year again. A moment during 365 days where I contemplate more than just my day-to-day. If you’ve followed me for awhile, and even more so followed me on social media you know that I typically speak about my health issues in a matter of frank honesty, but with an air of “it is what it is.” There’s a million reasons for that, but mostly it’s just the truth. When you have multiple chronic illnesses that make theirselves known on a daily basis, it’s not healthy, productive, or worth it to sit there and complain or talk about how “unfair” it is. Ya know what, yeah, I wish that I didn’t have them, but the cards you are dealt in life are for a reason. I may not believe in any kind of higher power, but I wholeheartedly believe choices and events in your life are linked together. I believe that changing one thing about what has brought me to where I am today would have caused me to not have or be precisely what I am/have today. And that alone makes it easier to adopt a “it is what it is” mantra.
I’m damn happy with where my life is today. I’m marrying my best friend and love of my life in 4 months. I have a job that I genuinely enjoy waking up to go to every day. I have friends and family I would drop anything for if needed. I am relatively healthy (as in, I function every day and it’s not life-threatening). So when I reflect on my health issues, my diseases, and answer the question of if I wish I had been dealt different cards? No. I don’t. My health is part of me, a very large part of me, but still just a part. To change any of those other parts would be heartbreaking, and I believe in the connectivity of each facet of a person’s life.
I didn’t intend to get that deep and philosophical, but it’s such an interesting question people ask when they learn you have a couple incurable diseases. “Don’t you wish you had a different life?;” “It would be nice if you could go back in time and change everything so that you didn’t get sick.” That’s all well and good, but what about everything else? If I have to be sick and have health issues in order to have exactly all of the other things in my life, then I wouldn’t change one damn thing.
Short little blog update of a stream of consciousness, but it felt important to note that not all people with multiple chronic diseases are unhappy with their lot in life. That sounds weird and maybe masochistic, but I think it bears noting that my life is a culmination of good, bad, ugly, beautiful. And that alone is pretty damn lucky.
I know, I haven’t written at all in so long, let alone given an update on my health and health management plan. My last update was about a year and a half ago, and I think I can say confidently that not a whole lot has changed, taken in both a positive and negative way.
The last time I updated this space with a health update, I talked about getting a new, better (read: more accurate) diagnosis of Rheumatoid Arthritis and starting a new biologic treatment called Actemra. The great news is that over a year and a half later I can still say that this medication is managing the disease and inflammation better than most things I’ve tried in the past. My bloodwork has consistently been very low when it comes to inflammation makers. As in, 0.5 last time I checked my CRP numbers! Guys, I’ve never had a number that low since I originally got sick back in 2011/2012! Insane.
That’s not to be confused with being symptom-free, however. And to be fair/clear, symptom-free is not a state of being that I really aspire to either. This gamete of diseases having a party in my body are not going to ever go away. There is no such thing as zero pain or zero symptoms. In fact, aiming for that is setting myself up for failure. And I’m not saying that to be negative or a pessimist, not at all, but there is a level of realistic expectations as well and I believe it’s unhealthy for my mental health to believe otherwise. So yes, I’m still in pain every single day; yes, my other diseases are not nearly as managed as the Rheumatoid Arthritis; baby steps are the only way to live a new normal of chronic illness and autoimmune diseases though. And THAT’S OKAY!
Nevertheless, let’s talk a bit about what’s NOT managed. Take a guess, I bet you can….
DING DING DING! Fibromyalgia, folks!
Not a surprise, but still a pain (literally) and a frustration. Since I was diagnosed with Fibromyalgia back in 2012, I have never been able to find solutions to truly manage the symptoms of this disease. Sure, the anti-depressants help a bit (if you aren’t already aware, anti-depressants target the same receptors in the brain that are believed to be the overactive pain receptors of Fibromyalgia…not to be confused with thinking this disease is “all in your head”). Nevertheless, the symptoms are there. And if I’m honest, Fibromyalgia is the source of my most debilitating symptoms from a day-to-day perspective. I certainly have bad days with Rheumatoid Arthritis pain and symptoms, but those are much fewer and farther between than the DAILY Fibromyalgia symptoms. The biggest handful of “life-interrupting” symptoms, as I like to call them, are brain fog, pain, and fatigue.
Pain is pretty self-explanatory: it hurts, haha. Fibromyalgia pain feels like someone poured menthol or “Icy-Hot” through your veins, but not in a good way. More in a “everything burns and hurts” kind of way. But brain-fog and fatigue? Woof. Those are the doozies.
If you’ve never had brain-fog and/or fatigue, i’m sure it’s hard to imagine the reality of symptoms like this. Fatigue is so much more than saying I’m really tired; it’s about sleeping 10 hours but still feeling like you can’t peel yourself off to bed. It’s about having so little energy that by the time you get through a normal 8-10 hour workday or a normal 40-50 hour work week, you have nothing left in you to function like a “normal” human being. Fatigue and brain-fog are semi-related for me, but both coexist by themselves as well. Brain-fog is a bitch, guys. Like fatigue, brain-fog is so much more than “I have a terrible memory.” It’s the inability to remember ANYTHING unless I write it down. It’s having a sentence/thought process leave you in the middle of talking. It’s stumbling over my speech and my words all day and sounding pretty inarticulate.
I had a day like this yesterday at work. We have a new employee who started on our team and it was a mental mind-fuck for me all day trying to on-board and introduce projects and details to him. I was tripping over all of my words all day. I was jumping from half-thought to half-thought like I couldn’t finish one explanation before jumping to something semi-related. I was miss-pronouncing words all day. Let me tell you, all of that is even more frustrating than it sounds on paper too. Not only does it make me feel dumb, but it’s so hard to explain that it makes me think I give off an unprofessional or inarticulate vibe. Sure, to most of the people in my life I can say a simple: “Ugh I’m sorry, I’m having a seriously bad brain-fog day today,” but if you’ve just met me I’m not about to lead with “Hi, I’m Kristin and I have brain-fog so excuse my gibberish all day.” Yeah, that doesn’t work.
If you know me, you know certain things about me that you probably didn’t realize are the ways that I have trained myself to overcompensate for brain-fog. I take notes. And I mean, thorough notes from every conversation I have at work. I put so many reminders in my calendar that you would laugh at: “do laundry,” “put clothes away,” “bring tea to work,” “call Dad,” etc. Those seem like reminders that everyone would have in their day to day; however, it’s more than ‘I Forgot.’ It’s hard to explain but it’s like my brain can’t compute that that would need to happen naturally, or that a certain task would be a natural part of someone’s day. It’s really bizarre. Like my brain is actually blank at times and I can forget what I’m trying to do or trying to say in the middle of everything.
Anyway, all of that is to say that I am mostly managed with my diseases today. I am more pain-free from the biggest disease than I ever thought possible. On the other hand, there is a large chunk of my life and my health that still isn’t managed. It’s still not fully explained. I read a lot of scholarly articles, and follow a lot of peer chronic illness patients, and I resonate with some of their diagnoses more than I probably like to admit. So, truthfully speaking, I still think we’re missing something. I still want to have a clinical immunologist take on my case. I still think I have another disease that we haven’t identified. And that’s not about wanting more things to be wrong with me, or not embracing the positive treatment plan I have now. It’s not about that at all. It’s about knowing my symptoms, knowing my body, and knowing my health. I know that there is an underlying issue that we aren’t exploring well enough right now. I’m not sure what the next step is to explore that. Maybe I will tackle that in 2019, among many other large and daunting goals, haha.
Before I sign off from this Health Update, I’m going to briefly mention something that probably deserves an entire blog post or more of attention. If you know me in real life, or probably even if you follow me closely on social media, you know that being on steroids from 2012-2015 made me gain a bunch of weight. And if you know me in said mediums, you know I’ve spent the last 2-3 years trying to lose that weight, unsuccessfully. If I maintain my promise of being 100% transparent with you in this space, then I have to admit that it bothers me more than I allow myself to express on a day to day basis. Mentally, I’m miserable over it. I think about my weight every. single. day. and multiple times a day. And I feel like I’ve tried everything: Weight Watchers, Noom, Beach Body, Isagenix, Calorie Counting, etc. The worst part? Literally haven’t been able to lose a pound. Not one. So aside from continuing to eat healthy 90% of the time and walking/swimming whenever I can, what else can I do? If you have been in the steroid weight situation, what did you do? There’s a part of me that feels a little desperate about it. I feel like I have major life events coming closer and closer and I don’t know that I can accept celebrating those at this weight. So, I’m putting it out there to the Internet, because let’s face it, I’ve seemingly tried most everything else.
Until next time,
Don’t get too excited; I’m not 100% sure how much I’m “back” in my blogosphere. But I have been getting the desire to revive this space and come off of my hiatus. In saying that, when I officially do come back, I want this blog to branch out into more of a lifestyle space. I think my break from blogging stemmed from burn out of “Chronically Kristin.” What I mean is that I spent so much time and energy last year in physically dealing with my health, that virtually speaking about it, taking on freelance work speaking about it, and organizing more opportunities became too much. I honestly just got sick of my chronic diseases and talking about them. Don’t get me wrong: that has always been one of the main goals of this blog, and I envision it staying that way somewhat, but as much as my diseases are a part of me, they aren’t nearly the only parts. And I want to highlight and talk about that more. So! More to come on that.
One thing I did want to do is publish a true-to-form health update. So many things have changed for me in the past 8 months that this seems like a logical place to start if I’m going to be back in the blogging game.
As most of you know, I spent 2016 in a state of flux when it came to my health and diagnoses. After a second opinion, a detox off of all my medications, new symptoms, new treatments, tests, etc., I did finally receive a new diagnosis, and ultimately, a much better path of care and disease management. At the end of 2016, I was officially diagnosed with Rheumatoid Arthritis instead of Ankylosing Spondylitis.
I honestly can’t explain the relief and happiness that comes with that official distinction. That probably sounds strange to be grateful and happy about something that isn’t necessarily “good” news. But the fact of the matter is, this diagnosis has answered dozens of questions that have been inexplainable and unanswered for the past 5 years. To have a name to EVERY symptom I’m experiencing is something I thought I would have to give up on attaining. It’s unbelievably calming just to have a name, a diagnosis, and the right one, finally.
In addition to that, I have a treatment (a new biologic/anti-TNF blocker injection specifically for RA) that is working. And legitimately working, not just taking the edge off. My inflammation levels are 10 and below; to put that into perspective, a healthy person’s inflammation levels should be 3 or below. Before this, mine were over 200. Suffice it to say: we’re officially in the positively managed disease range. Most importantly, I’m feeling better than I have in an entire year. That’s not to say I have zero symptoms and I don’t still have bad days: let’s be real, these diseases aren’t going to hibernate that well. But I can’t ask for better management than I have currently.
Another plus is that because the treatment is working so well, I’m able to ween off of the chemo injections too. I’m already down to a half dose for those shots, and depending on what my blood tests show in a couple weeks, I will come completely off of chemo. By June 15, I will more than likely be chemo-free!
All rambling aside, that’s about where we’re at in this health journey of mine. I honestly couldn’t be happier about where I am right now. I just cross my fingers that my body will allow Actemra (current biologic I’m using) to work for years to come. Fingers crossed, folks!
As always, xoxo
I know it has been quite some time since I have written here, and I wish I could tell you that I have a lot of fun posts coming up for you!
However, I will be taking an extended break from this blog in order to focus my attention and energy (or lack there of) on my health and chronic illness situation. Please feel free to reach out to me on social media, or by email or text. I’m more than happy to chat, but just won’t be writing about my health through here for a little while.
@KristinMCoppens (same username for all social media channels)
Have you missed the previous posts for the #SelfCareMvmt? Take a look at weeks 1 – 5 below:
I have talked a lot about this in the past. When you have chronic illnesses, the difference between visible and invisible illnesses becomes a large part of your interactions with the world around you. It’s a conundrum because you want people to understand what you’re going through, yet you also don’t want it to be the first thing people notice about you.
In comes this very last blog post for the #SelfCareMvmt series, where I’m asked to write an open letter to someone in the hopes that it helps them understand some of the “unseen” challenges I have as a patient. For me, I think there are a lot of people surrounding us chronic illness patients that don’t really understand or can’t quite comprehend what we actually go through on a day to day basis. I think what I’d like to do in taking this opportunity to write an open letter is to be real honest about limitations, symptoms, and day to day occurrences for chronic illness. In doing so, this letter really becomes an open letter to the world around me.
When I talk about my chronic diseases and health problems right now, it’s a little tough to decipher because I’m in the middle of so many questions, unknowns, and tests related to me getting a second opinion. Right now, I have an immense amount of symptoms and struggles, but not very many answered questions or official diagnoses. Keep that in mind when I talk about how severe my limitations and symptoms are. I don’t envision this to be the case forever, knowing that I will get a better, more thorough, diagnosis and better treatment soon. And chronic diseases also ebb and flow, meaning the symptoms I have today are not necessarily the symptoms I will have next month, next year, or 20 years from now. The beauty of rheumatology, right?
So what is it like to be me every day? It’s a lot like a 28-year old’s mind stuck in an ailing 85-year old body. Let’s get pretty real around here–I am probably one of the most stoic people you will ever meet. In fact, of the handful of therapists I’ve had in the past 6-8 years, every single one of them has uttered those words: “You are an extremely stoic person; that brave face you put on does wonders to fool everyone around you.” Take that as you will, but to me it’s both a positive and a negative. I am stoic. I do put an extremely brave face on for probably 95% of the time. In some ways, that brave face lets me have a successful career, interact with my friends, and simply get out of bed every morning. That brave face keeps me externally sane. The fact that I remain stoic fools people into thinking I feel pretty good and that my health isn’t bothering me that much.
Here’s the truth behind that: fighting to keep a brave, stoic face is what keeps my head above water. My symptoms are like nothing you can imagine. So at night, and on the weekends, I’m often too damn exhausted to keep that face on. I often end up in bed all weekend and/or sleeping a ton. It’s not so much that I don’t want people to know how bad my health problems really are: I obviously have no hesitations on sharing personal details of my life. I think it’s more for myself than the world around me. I want to prove to myself that I can be successful and that I can win in the face of serious physical (and sometimes mental) adversity. In order to do that, I have to succumb to the symptoms when I have my down time. It’s exhausting.
In keeping with the phrase “an open letter,” here are what my symptoms really feel like. No faking, no toughing it out, no masks. I’ll be talking about my symptoms outside of official disease names since so much of that is back to the drawing board for me. In terms of back pain, I typically have this every day. If it’s my lower, lumbar spine pain, then it feels like someone took a block of knives and just stuck them all in my lower back. In terms of the thoracic, mid-spine pain, that’s usually compared to wearing a belt or something far too tight right around my chest. When I try to breathe deeper, it feels like the inside of that belt has sharp points that dig into my ribs. Moving on to my hips–surprisingly this is what actually made me head to the doctor for the first time 5 years ago. The hip pain feels like flu body aches the majority of the time; sometimes it ends up as sharp pain, but it’s mostly throbbing, and it makes it difficult to walk normally a lot of the time. In fact, lately I’ve been contemplating whether or not I need some sort of walking assistance for when the pain is that bad (like a cane). I still don’t know how I feel about that–but it’s something I will probably bring up to my doctor on if there is any benefit to it or not. I’ve been having trouble walking without my legs (hips, knees, and/or ankles) giving out or being in extreme pain lately. So no, I’m not lazy–I just try to protect myself from exacerbating my symptoms as much as I can. When I say that I can’t, it’s not an exaggeration or an expression, it’s that I really can’t at that moment. Some people in my life are more accepting of that fact than others, but I have learned to stay true to what my body needs regardless.
Now that we’ve covered the core areas of the body, I can talk more about the peripheral joints, like hands, wrists, knees, ankles, feet, maybe shoulders. These joints are, again, less of the stabbing pain, and more like the throbbing body aches. Often along with that I get the burning nerve pain where it feels like my joints are on fire, but that they are also cold–think Icy Hot, and not in a good way. I guess that goes into the widespread body pain that I have. The nerve pain I mentioned occurs all over my body in varying degrees of severity. On really bad days, it actually hurts to wear clothing–in fact, my hair actually hurts, and yes, that’s a real thing. Look it up. I tend to have sensitivity to touch, relating to this. For example, when I reach to itch the back of my arm, it actually feels like I bruised it afterwards.
The temperature fluctuation is another fun one! In the recent years, I have developed a part of my immune system that is unable to regulate my body temperature. In other words, there is actually a temperature control bit of my system that is missing. This means that as much as I love summer, I really can’t handle it anymore. So when you can’t believe why I’m not outside enjoying the 80 degree weather, it’s because in 10 minutes I’d feel like the world is closing in around me and I’m going to pass out. Yay!
Lastly, let’s cover the less obvious parts of the body symptoms. I’ve recently developed digestive issues. Bad stomach cramps, etc. We haven’t yet explored that one, but it could be due to the inflammation in my body. Lots of preliminary studies show a link between gut issues and inflammatory diseases and/or autoimmune diseases. Additionally, my energy levels and fatigue are horrible. The lack of energy and severe fatigue are really hard. It can be physically painful for me to not allow my body what it wants: sleep or rest/laying down. I am often to the point where I am so exhausted that I’m in tears. And keep in mind, that’s after the fact that I typically get 8-10 hours of sleep a night. All of these symptoms definitely do not help my depression and anxiety either, but it’s a cycle. They both cause the other one, so to speak.
In saying all of this, once again, I’m not looking for sympathy, I’m not looking to get attention. As I explained above, I obviously remain stoic and the exact opposite of how I feel in order to avoid a lot of that. Nevertheless, I think it’s important, especially if I’m trying to write an open letter to the world around me, to be completely honest and real with all of you. It’s really not fun to live in my body every day. But I also know that I have to make the best of it, so I tend to put that brave face, or stoic personality, on in order to trick myself into keeping my mind off the symptoms. Like I said, it’s really more for me than for you. But there is still that part of me that wants people to see me as Kristin, and not as Kristin, the girl with multiple health problems.
I urge you to ask me about all of this. If you aren’t sure what it feels like, just ask me. Don’t assume. I’m obviously an open book, and it’s one of my missions to enlighten the world to chronic pain and chronic diseases. Believe me, people like me are more common than you would think.
P.S. As we wrapped up the #SelfCareMvmt series in blog form, I urge you to attend the Self Care Summit in Toronto on June 27th! This is the first event of it’s kind, put on by Self Care Catalysts. I’ll be there speaking about patient experience and sharing my story, so I hope to see you there! If you can’t make it in person, I hope you’ll follow along on social media and interact with the conversation.