- Erin Coles
My Autoimmune Journey
OK friends, buckle up for this one! When I sat down to write about my 7+ year autoimmune journey, I realized just how many experiences and stories there were to pack into one blog post. So although I tried to keep everything as concise as possible, I realized I had a lot to say!
So why am I even sharing this post?!
When I started my autoimmune journey, I felt so alone. I didn’t have any friends who were dealing with something similar, and all of the online blogs and articles I read were depressing. I want to share with the hopes that I’ll help at least one person feel not so alone.
I’ve learned to flip my mindset over the past several years. I used to feel like I had lost who I was and was constantly grieving and comparing my new self to my old self. Now I focus on the future, on healing, and feeling like the best version of myself NOW. I want people to know it’s possible to live a happy and fulfilling life with a chronic illness.
This has been a HUGE part of my life, and a defining factor in who I am today. To me, it’s an important piece of who I am. It’s not everything, but it’s a part of me.
My autoimmune journey started back in 2012, so if you already know me, and know my journey up until recently, scroll down to the Late Summer / Early Fall 2019 section to see an update. And if you’re not new, and/or want to hear about my full autoimmune journey, feel free to read through the whole thing! As someone with a chronic illness myself, I would have loved all of this information way back in 2012, and reading through the whole thing will definitely give you some context about my life and maybe a new perspective on your own life and journey. :)
And one more thing before I start! Just as a little disclaimer here, I want to be clear that:
I am not a medical professional. Anything shared here is solely based on my personal experience, and isn’t intended to act as medical advice. Please consult your doctor!
I am not a nutrition specialist, so anything shared about my diet is based on my personal experience. Please consult your doctor or a nutritional specialist, and/or do a lot of research and pay close attention to how your body is feeling if you decide to make a dietary change.
I’m going to add a few photos throughout that may be difficult for some to see. They’re A-OK for me, but I know some people get a little iffy around some things! So if you’re one of those people, take note!
So here goes nothing!
December 24, 2012
This was my 23rd birthday! I went to bed the night before feeling tired and excited. My birthday always consisted of amazing food, good drinks, Christmas music, cake, and quality time with my family. But when I woke up that morning, I could barely move. My muscles and joints hurt so badly, and they were incredibly stiff. My fingers were inflamed, and looked like sausages. I could barely walk down the stairs, and I had trouble doing normal tasks like putting my hair in a ponytail, zipping my jeans, or tying my shoes. Needless to say, having been a very health person before this point, I was VERY confused. I know I look semi-normal in this photo, but I felt like I had just been hit by a truck. That day was a STRUGGLE.
I had just finished my last semester of college, and was planning to move to New York City to live with my then fiancé, now husband Drew. I had just finished taking my finals, had just finished working 2 jobs on campus, was in the midst of studying for my LSAT, and had just started packing all of my things to make that big move. Once my birthday was over, I figured that if I just got some rest I would feel better, and could finish packing and getting ready to move. I was definitely wrong. I could barely move my body, and I felt terrible, so my older brother and Mom helped me pack up my entire life.
A few days later, we packed up the U-Haul, and Drew and I started the trek down to New York. Not only was I moving into an entirely new apartment, Drew was also moving from his apartment in Ridgewood Queens to Astoria Queens. So once we got down to the city, we had to pack up his entire apartment. I still couldn't move, and ended up going to urgent care on moving day. The doctor ran some tests on me, and told me that I probably had a virus and that I just needed to get some rest. I knew there was something else going on, but tried to rest as much as I could given their recommendation. Which of course was pretty difficult because I was in the midst of a move, I was studying for my LSAT, and I was trying to find a job.
Sometime that winter, 2013
Fast forward a few weeks, and I had gone to a handful of doctors, all who had different theories about what was wrong with me. I still didn’t know exactly what was wrong with me, but I had a feeling they were all wrong. I finally went to a doctor who told me that I probably had lupus, and referred me to a rheumatologist. I couldn't get an appointment for a few months, but made one as soon as I could. When I started doing research about Lupus, and learning more about autoimmune diseases, I finally felt like we were onto something. The symptoms all made sense, and I couldn’t wait to get into that rheumatology appointment and hopefully gain some more insight.
April 2013
I finally had an appointment with a rheumatologist in April 2013, and my doctor ran some blood tests. After getting the results, she shared with me that although I didn't fit the criteria for Lupus, I did have the same antibodies in my blood, so she diagnosed me with Undifferentiated Connective Tissue Disease (UCTD). That essentially means that I had a connective tissue disease that wasn't differentiated into a specific autoimmune disease, like lupus. She put me on a drug called hydroxychloroquine, which is commonly used to treat lupus. It's actually an anti-malarial drug, but doctors have found that it helps with lupus symptoms. They do not know why, which is a little freaky, but it does help.
2013 through 2017-ish
For the next few years I tried to do as much research as I possibly could to find ways to feel better. For some reason at the beginning, I just kept coming across articles and forums that made me feel worse. Everything I read felt so negative. I kept finding articles that reminded me there's no cure. I found forums where people who had lupus and other connective tissue diseases talked about how awful they felt, how much pain they were in, and how they developed more autoimmune diseases on top of what they already had. I just kept reading so much about how people couldn't find relief. It was discouraging to say the least.
On top of that, I was mourning the loss of my previous life, and I'm pretty sure I went through a grieving process knowing that I couldn't do the things I used to be able to do. I have always been a runner, and running became almost impossible for a while. I've always been a really hard worker, and love to fill my plate with a bunch of different things that bring me joy. There were times I would still do that, but I would feel awful because I was putting far more stress on my body than it could handle. And there were other times I would take things off of my plate just to get some rest, and I missed those things so badly. And there were other times I wanted to rest, but had to work my butt off to keep our business surviving and thriving. I felt like I just couldn't find a good balance between managing my disease, running my business, maintaining my personal relationships, and following my ambitions.
2017-ish
Drew came home from a recording session one day and said, “Erin, I’m going vegan.” Drew makes these sorts of convictions about different things all the time, so I just said okay, and decided to go vegetarian at the same time. Meat had grossed me out since I was a kid, so it really wasn't a big shift for me. But because Drew was fully vegan, I ate vegan about 90% of the time. I left the door open to have dairy and eggs every once in a while, but otherwise was eating vegan. I started to feel a little better, and I had less pain and inflammation in general, so about six months later I decided to go fully vegan. I started to feel even better, and had days I even told Drew that I felt like a normal person. For anyone with a chronic illness, or an autoimmune disease, you know how special those days are where you can say you feel “normal.” They are so rare, and so beautiful!
In general, I started paying way more attention to my diet, my stress levels, my physical activity levels, my self care and rest time, and focused on what I could do that would cause the least amount of inflammation. I started researching the right things about my autoimmune disease, like how to keep the inflammation down, and which diets were most helpful. I started to find positive articles and people who had virtually eliminated their autoimmune disease using nutrition. I started to feel much more positive that I could feel better and better, to the point where I wouldn’t even notice my disease. If only I did the right things, I could live that “normal” life I dreamed of!
My inflammation was going down, and I was starting to feel so much better - but around the same time I started to notice that I would get rashes periodically. They would mostly show up behind my ears, on my neck, and sometimes rarely in other places like on my wrist or my lower back. I went to a few doctors to see if I could pin down what was going on with these rashes. My primary care physician said that it was probably eczema, or could be an allergic reaction, so she referred me to a dermatologist, and also ran a skin allergy test to see if I was allergic to anything. That allergy test came back negative for pretty much everything - except for a very mild sesame seed allergy. And I don't really eat sesame seeds, so there wasn't really much I could do on that front.
****ALERT!! Photos of skin rashes coming up!
So if you don't want to see, scroll fast to the next part!****
I debated whether or not to show these photos, but figured - hey, why not? I'm being super vulnerable already, so I might as well show how bad things have been, because maybe this will help someone with similar symptoms find some sort of relief.
My dermatologist said that it was probably eczema, and that I should start paying attention to what I was putting on my body, and what might be irritating my skin. Because I had these rashes for a while, I had already started to pay closer attention to what might be affecting my skin. I went for milder soaps, I switched to milder lotions, I stopped wearing perfume, I started only wearing high-quality jewelry made out of silver and gold, I stopped wearing necklaces altogether since the breakouts were happening on my neck, and I paid closer attention to what I was eating, how I was feeling, and if any of this was affecting my skin. I couldn't seem to find a pattern, and I couldn't seem to find a product that was causing the rash, or that would make the rash get any better. I tried steroid creams and other eczema ointments. Some would help for a while, but the rashes just kept coming and going over and over again for years. There were many moments I felt like I was doing something right because my rash would go away for a few months, and then it would come back with a vengeance!
I shared this information with my rheumatologist as well, and she had the same recommendation as the dermatologist. She just told me to use milder products and pay attention to which products I was using when my skin flared. I started to feel really frustrated, because the problem kept persisting, and I kept getting the same answer. And I kept trying new things, but nothing I tried worked. I am positive that I spent way too much money on new products over those few years, because I just kept trying to find something that would make a positive difference.
Late Summer / Early Fall 2019
Sometime in late August or early September of 2019, my rash came back and it was on another level. It has been gone for a little bit, and I thought I could attribute that to my diet. I had gone totally raw vegan at the very beginning of 2019 for a few of months, And after that, I had kept my diet much healthier than it had been in the past. I had been focusing way more on my overall wellbeing, like my stress levels, and levels of physical activity. I was all around doing relatively well on the health front, and was feeling pretty good. But like I said, that rash came back worse than it ever had before. This time it showed up in a much more sensitive place. I still had it behind my ears, on my neck, and on my hairline - But then it showed up in between my breasts, in the fold between my buttocks and thigh, and on my lower back. Not going to show you photos of this, hah!
By the time late October and November rolled around, the rashes got even worse and spread a little further into the most sensitive areas of my body. They were so bad that I was having trouble sleeping. They were itchy, and painful, and seemed to get worse at night when I really needed to sleep. In December, there was a period of time where I didn't sleep for about 72 hours straight. I'm sure I dozed off here and there, but I just remember watching the clock for a few days straight. I would see the clock go from 10PM, to 11PM, to midnight 1AM, to 2AM, all the way up to 7AM, and then throughout the entire next day until that cycle started all over again.
I went to the doctor and I was told that the existing rash had opened up my skin and made it more vulnerable to other infections. So I found out I was fighting not only whatever this rash was, but I was also fighting a bacterial and fungal infection on top of that. I know some might say this is too much information, but I'm not sorry for sharing it. And if it’s too much, stop reading. I had never experienced something like this, and couldn't seem to find anything online that made me feel supported. I felt like I was going crazy. I wasn't sleeping, the rash would not go away, and I was still having to work - and did - about 60 hours each week even when I was feeling awful.
I called a new dermatologist in mid December to set something up so I could really get to the bottom of what was going on, and the earliest appointment was in mid-February of 2020.
February 2020
I went into my dermatologist appointment in February. It was specifically set up as a learning facility, where medical students are working alongside the doctors at that location. I went into my appointment, and spoke with a few different doctors about my symptoms. They decided to order a few tests. The first was a more in-depth allergy test to see if I was allergic to anything that could be causing these rashes. They also did some blood work to see where my antibody levels were for my connective tissue disease. Lastly, they did a biopsy so they could test a patch of my skin to see what it could be. The doctors told me that if it wasn't allergies, and wasn't some sort of side effect of my existing autoimmune disease, that it could either be eczema, or maybe even psoriatic arthritis. The doctor told me that psoriatic arthritis would be the worst case scenario, so she said she hoped it wasn't that. I made a follow-up appointment for a couple weeks later so that I could get the results of each of those tests.
And quick side note: I have to say that I really did not enjoy my experience at that first appointment. Due to the nature of this particular doctor's office, I had a bunch of doctors coming in, looking at my skin, poking at my skin, and talking amongst themselves about what could be wrong with me. They were not talking to me. They were just talking amongst themselves, smiling and whispering as they made a hypothesis about me, each thinking they were right. It made me feel extremely uncomfortable, and that I was a fun science experiment, and not a human sitting in front of them. I did my best to keep my stress levels low and try to breathe through my frustration, but it really wasn't a great experience.
When I went into my follow-up appointment, I brought my older brother, because I had no idea what I was about to hear. I was also still frustrated about my last experience, and wanted to make sure I had someone there for moral support should I end up feeling that uncomfortable again. A doctor walked in - not my doctor, but one of the many doctors I would see that day - and said, “Ok, so I have good news and bad news - which one do you want to hear first?” I thought this was an odd way to start the appointment, especially because I was visibly nervous, but I went with the flow and told him that I wanted to hear the good news first. He said the good news is that they got my blood results back, and I no longer had connective tissue disease. He said that I had somehow completely cured it, and that there were absolutely no antibodies in my blood that would point to any sort of connective tissue disease. He also mentioned that he looked at some of my blood test results from the past couple of years, and that the antibodies hadn't actually shown up in my test results for about 2 years. He asked if I had known this, and I told him I didn't. Apparently, my rheumatologist had run these tests the last few times I was in the office, saw that there were no antibodies, and didn't share that information with me. I would have thought that's the kind of information someone should share, so it was pretty confusing and frustrating to hear - but knew that I had some bad news ahead, and asked what the bad news was.
He told me that my biopsy results had come back and that I had psoriatic arthritis. He said he had already spoken to my doctor, and that they were going to recommend Tremfya, a biologic, which is an injectable medication that helps target and suppress a very specific part of the immune system so that it treats only the psoriatic arthritis, and doesn't bring down my entire immune system. I asked if there were any natural ways to fight and manage psoriatic arthritis. The doctor mentioned that although there are ways to help decrease the symptoms through diet, exercise, and some topical ointments, this biologic was going to be the best option to get me into remission. I reluctantly agreed to try it and they sent in my prescription.
A few weeks later, COVID hit NYC and totally shut it down. My medication hadn't been delivered yet, and all doctors appointments at my dermatologist’s office were cancelled for the foreseeable future. All of a sudden, I was working completely from home. I manage a wedding band in New York and everything we did was on hold for a few months. Although I was working tirelessly to help our couples postpone their wedding dates, and manage all of the information and guidelines that were coming our way, all in person weddings, rehearsals, and everything else was cancelled immediately.
Over the next couple of weeks, my rash started to disappear. I felt a lot better, and I'm certain that was because I wasn't running around as much, and was able to manage my physical activity and stress levels much better. So I never scheduled the delivery of the Tremfya, and scheduled another appointment with my dermatologist - this time virtually - to discuss what I should do. I was told not to be nervous about taking the biologic, but I honestly still was. Knowing that it was suppressing any part of my immune system in the middle of a pandemic really freaked me out, and so the doctor recommended I stay on my hydroxychloroquine for the time being since it was helping my muscle and joint issues, and to not go on the Tremfya at all unless I had another psoriasis flare.
PS: In this photo I shared, we took our masks off for the photo then put them right back on. :)
August 2020
Flash Forward to now. The rash started coming back about a month ago, and it has been bothering me pretty bad. I'll admit that it was nowhere near where it was in December of last year, but it was definitely affecting my sleep. I've been really exhausted, because I’ve only been sleeping somewhere between 2-3 hours each night. Every once in a while I'll have a good night's sleep, but I haven't been able to catch up.
So I just had another virtual appointment with my dermatologist, and we decided that Tremfya is the best option for right now. I have been waffling on the decision to go on it for a couple weeks now, knowing I had this appointment scheduled. I'm still nervous to go on it. But I also know that I can't continue to live the way I've been living, and deal with so many sleepless nights and so much pain. I also did a bunch of research to learn more about this particular drug, and about what my life might look like if I don't start taking it. The complications of long-term inflammation, and even the mental effects of having this disease are far worse than some of the risks of going on it right now. So, I'll be starting Tremfya in a couple of weeks, and will need to inject it into my thigh or stomach every 8 weeks. Once again, I'm still nervous, but I really hope I will be able to find some relief after years of dealing with this. Once I'm able to get the inflammation down, I'm sure I will feel better and hopefully, somewhat close to “normal” again. I know this will be a constant journey, so I’ll keep researching, learning, and doing my part to live a healthy life.
I know this is a heck of a lot of information, and bless you if you took the time to read this entire thing. I know there are a lot of people out there that won't care to read this. But I do know that there are plenty of other people out there who feel just as lost, alone, depressed, and frustrated living with something and not finding any relief or any answers. There are also plenty of people out there, just like me, that have gone to multiple doctors and have spent years of trial-and-error to find out what was actually wrong in order to properly treat it. That can be so infuriating. I also know there are a lot of people out there who have tried to explain their illness and how they're feeling to their loved ones, and who are met with confusion and misunderstanding. Autoimmune diseases are not easy to navigate or manage and they’re even harder to explain. I hope that by sharing all of this information I'm able to help somebody who is going through something similar, or who has a loved one with an autoimmune disease.
And I want to end by sharing that there was a time at the beginning of this whole process where I felt totally hopeless. Once I changed my mindset and learned that I could feel better, I did whatever I could to feel better. And even though I ended up with a different autoimmune disease, I somehow was able to cure the one I already had. I find that pretty remarkable and uplifting, and understand that through trial and error, and proper management of an autoimmune disease, it’s possible to find relief. As much as it might have felt that all hope was lost at one point I can say for certain that it's not.