When it comes to our health, doctors may be the experts, but we must be our own best advocates. The Internet can bring terrifying results (just ask any mother googling “fever” at 2am) but it can also create powerful online communities for people searching for answers. You know your body best, and you know what feels normal or not.
My goal with these interviews is to highlight rare (or maybe not so rare but rarely talked about)health conditions, in the hopes that by sharing information, we can help others make connections to their own health.
Here I talk to my friend Anne Marie about her experience being diagnosed with a super rare autoimmune disorder called Relapsing Polychondritis 5. Anne Marie is one of the funniest people I know, an exuberant presence who can light up a room with her laugh and her ridiculous stories. She’s also an incredibly talented graphic designer and her cooking makes me weep (wait, why am I only friends with people who can cook?). Her attitude is inspiring, and maybe, just maybe, her experience will ring a bell with others who are going through a frustrating or confusing health experience.
Can you give a little background of when your symptoms first started appearing, how did they manifest? And what were you first thoughts about what was going on?
Five years ago, in June 2012, I began waking up with ear pain after sleeping on it. No big deal. I just thought I was sleeping incorrectly or maybe not turning over in the night. I was able to brush it off for many weeks, and quite possibly many months went by before it was disrupting my life with enough pain that seemed out of the ordinary.
The pain manifested in my right ear. Over time it became purple and very swollen, with acute, off-the-charts pain. The whisper of a sheet grazing my ear in the night would have me sobbing by myself in bed with blinding pain. A sheet. Then the crying would make it worse. So I’d find myself sitting up in bed, very scared about what was happening, overwhelmed by the pain, and stifling emotion and tears. At the same time, I would wake up nightly with spastic coughing fits. Choking, coughing, gasping fits that would not only wake me out of a deep sleep, but would propel me out of bed like the building was on fire. I would fight to break through the choking—not realizing that this was a congruent symptom. And—my knees, ankles, and feet hurt. I was limping from time to time. What I believed were disparate occurrences would indeed be connecting dots for diagnosis.
The ear pain; however, was the most present health concern because it was so painful, and weeks of antibiotics, including intravenous, were doing nothing. Eventually, I would be unable to wear glasses due to the pain of them on my ear. And in the final days before diagnosis and proper meds, I was unable to walk. Walking made it feel as though my ear was going to fall off—just the vibration from those slow city strolls. Even with the acuity of this pain, I just thought I had an infection. Certainly nothing chronic. My eagerness to resolve this and move on was growing.
What I believed were disparate occurrences would indeed be connecting dots for diagnosis.
So, between the time you developed symptoms and the time you got an actual diagnoses, how long was that? And what was that process like?
It was about 2 months from the start of seeking doctors to diagnosis. I actually didn’t have a primary care doctor in DC which definitely disabled the trajectory of diagnosis. My condition, however, is so rare that diagnosis on average takes 5 years. Five. Years. I cannot imagine withstanding that kind of pain for that duration of time. No way.
At the start, I was just going to like a Clinic USA—weekly. Finally, a doctor there told me to go to the ER. The big concern was that I had an infection in the ear, which, that close to the brain, can be a high-alert situation. I was being PUMPED with drugs. Eventually, I would go to the ER daily, which, in DC as the top trauma center, my “ear ache” took last place when in comparison to gun shots and other major injuries coming through the doors. I waited patiently and played angry birds (over and over and over). Once I’d see a doctor, they would draw more blood, pinch my ear that would make me scream at the top of my lungs, prick it with needles (more screaming and crying), more IV antibiotics. After several days of this, I would identify the nurse that I would want to start the IV. If you wiggle a needle in my arm to find the vein, I will kill you. So there was only a couple nurses that I really trusted with that.
Things were not going well.
I finally reached out to a dear friend who is an amazing trauma surgeon in DC. I sent him pictures of my ears, a full-page list of symptoms, treatments at that point, and current status. I needed his help in not only a recommendation for a specialist to see, but help with getting an appointment with that physician. Not only did he recommend an ENT, but an ENT that had particular specialty with ears. This was my golden ticket.
In the rare down-time moments from inaccurate treatment at the hospital*, I was home, packing up my life to move to Chicago—a city where I had only one friend and no job. I was so hell-bent on the move that it acted as a distraction. I was laser-focused on getting out of DC. Thankfully, I think it shifted some of my pain to a purpose so tangible that I’m certain that nothing could have prevented me from loading up that Uhaul.
*I feel it important to note that my inaccurate treatment was not poor treatment. I was going to an ER every day, getting shifted from doctor to doctor daily—this was symptomatic of my not having a primary care doc, not poor care. The attention given to me at GW is what I would expect from any ER, if not better. It was simply a bad situation.
Can you tell us about the diagnosis that you have?
So I was diagnosed with Relapsing Polychondritis 5 years ago, nearly to the day. I had to carry around a hot-pink post-it note in my wallet with “Relapsing Polychondritis” scratched on it for weeks after diagnosis, having never heard of it, and with zero ability to retain that long name. Someone would say, “Wait. What’s happening with you?” And I’d go into my bag, find my wallet, pull out the post-it, and respond, “Relapsing Polychondritis is happening to me.”
What would you say was the balance between what doctors were able to tell you, and what you found out yourself through research?
So, people who are diagnosed with something—and that could be anything from eczema to cancer, and everything in between, very often become experts and authorities of their disease or condition. And I was no exception. I’m grateful for the doctor who diagnosed me in DC. The average time it takes for a person with RP to be diagnosed is 5 years. And to me, that’s not surprising when you think about how many people live in “Middle America” where expertise might be lacking.
I was immediately put on 80mgs of prednisone which is a gigantic dosage, and it was wildly effective. Within hours I was able to sleep on my ear for the first time in months. It was the efficacy of the prednisone that actually led to the sharp diagnosis. And then I was on prednisone for years, paired with Methotrexate (which I affectionately refer to as Meth). Prednisone is not a lifestyle. It’s not sustainable. I refer to it as a blessing and a curse. It is ABSOLUTELY a miracle drug, but there are side effects that I experienced like hypoglycemia in addition to the other more well-known side effects, like a spike in hunger, bouts of…dare I say it…rage…and insomnia. But boy I unpacked my apartment in a DAY. Ya gotta take the good with the bad. It was always my and my doctors’ goal for me to get off the prednisone as quickly and effectively as possible, without causing a flare up, and that did take years. Methotrexate is a biologic and is a widely used drug for cancer patients as chemotherapy. I was on weekly injections. Meth is rough. Nausea, lethargy, required blood work to monitor kidney and liver function, and absolutely no ability to get pregnant on the stuff. You COULD get pregnant, but your child would have 5 eyes. And then you have to be off of Methotrexate for 6 months before even attempting to get pregnant, and god knows I think that timeline should be padded. It’s just super tricky.
I have always been the leader of my treatment. My doctors look to me, knowing that only I know how I’m feeling and doing. I led the charge for decreasing my meds and look to Dr. Brown for whether that is plausible and what the best method for doing so might be. I truly perceive my treatment as a collaboration between me and the medical team.
During all this, you had so many transitions. How did that affect you?
During the early diagnosis and treatment, I had just moved to Chicago, with no job. It was a very stressful time but also exhilarating. I chose to make that move and I was absolutely focused on creating success for myself. I was still fighting a lot of pain in those early days and was far from stable medically. In addition, I was finding my “new normal” (which is absolutely a thing). But I would take long walks along the lake front, meditate, envision the job I wanted, and soak up as much of Chicago as possible. I also quickly adopted a vegan diet in order to help use food as a beneficial tool. There have been studies indicating that veganism can lead to a decrease in autoimmune disorders, or at least, symptoms. While no western doctor will confirm this, they do support any healthy diet and lifestyle. To me, it did make sense—eat fewer foods that cause inflammation, and heal from the inside out. I no longer adhere to a vegan diet, but honestly, I wish I did. It was a very simple, easy, cost-effective way to go.
Regarding my insurance situation, I was set up pretty well with Cobra. Expensive, yes. But I was able to maintain my doctors and most importantly—specialists, during those first few months. Then I landed my dream job and secured a great health insurance benefit. What a relief.
Can you talk about the emotional weight of your condition now? How does it affect your mental and spiritual health? What are your coping mechanisms?
Diagnosis of any disease or condition can be a weighty experience, full of stress and uncertainty. I experienced all of that for sure. Finding my new normal was not only about identifying a new way of health and how I was feeling on the drugs, but how I was handling it all emotionally. In the early doctor days, which were frequent, I cried. I cried in the doctor’s office, then in my office, and then I’d cry at night too. “Doctor Days,” as I called them, were HARD. And they were hard because of the uncertainty, and that uncertainty was very much related to the fact that I didn’t yet have answers to several pressing questions:
Was I going to die? One statistic I read indicated that 50% of patients with RP die within the first 10 years.
How would my body handle the drugs?
How long would I be on these heavy drugs?
Would I be able to have children?
Would pain last forever?
What if I relapsed. What would that be like?
What I’ve discovered is that with great medical care and patience, time truly assuages these anxieties. I am currently in remission, which is a huge victory for me. But even in remission, I think about RP daily. I experienced major trauma to my right ear, so I’m always looking at it and assessing if it’s okay. I’m also just kind of recovering from the weight of it all. And truthfully I haven’t found my full footing yet. I remind myself to be patient now that I’m not a patient.
What are some of the things you’ve learned about healthcare and navigating the medical system?
Last year I experienced my second layoff in 4 years, which was far more devastating than my first. It also lasted nearly a year. During that time, I had no health insurance due to errors with Cobra and then the Exchange. I was living in fear every day, and this was before I was in remission. It was honestly too horrible to recount.
Nobody could lift the burden but me. They were my meds, my symptoms, my appointments to make, my blood work, my condition, my bills to pay, my stress. And while it seemed harsh at the time, it was empowering, too. It was mine to navigate.
You mentioned you are now in remission. Hooray! How long is it expected to last? Or, are there no expectations? How will you deal if/when it comes back?
I’m in remission! Hooray! There was very strong reason to believe that I’d never be in remission. But I personally just never subscribed to those negative thoughts. From day 1 I listened to my doctors, listened to my body, increased meds when I had to, and was always diligent with my medication schedule. My mission was remission and I’m grateful that I was able to find my way to the other side.
Dr. Brown mentioned in my last appointment that patients who have RP and experience 2 years of remission are likely to never relapse. WOW. I hope that I fall within that statistic.
I have thought a lot about relapsing, what that would be like, and how I would navigate that emotionally. And once those thoughts enter my brain, I really put it aside. I feel it’s so important to live fully in remission because it could be fleeting. I experienced a lot of stress and fretful thinking when I was undergoing treatment, which is totally valid. So I just don’t like to spend much time thinking about the negative “what if” now that I’m on the other side (it just seems like a waste of health). All of that to say, a relapse would be disheartening. I’m actively choosing the word disheartening over devastating. Now that I’m in remission, I’m careful about how I react to challenges such as this. And I know it doesn’t serve me to go down the rabbit hole of despair. Because at the bottom of that hole remain the same problems, the same issues, the same pain—and they all require solutions. And those solutions will never be found in the rabbit hole. This whole thing has been a huge growing and learning experience for me. I’ve seen that rabbit hole. I’ve lived in that rabbit hole. And now I know that I can acknowledge it and confidently say no thanks to that emotional pain.
I feel it’s so important to live fully in remission because it could be fleeting.
But ya know…talk to me next week. I’ll probably be in the rabbit hole. It’s easy to be wise and thoughtful when typing.
What would you say to people who are dealing with an unusual, rare, or recurring medical condition? What have you learned?
Well, I would tell them what my sister told me. And she grew up battling Uveitis (another very rare autoimmune disease). And what she told me was no walk in the park at the time. I was probably crying on the phone to her. In fact, I was. And I was saying how hard it was because I didn’t have any support in Chicago and everyone was on the east coast, and how alone I felt. And to that she told me: “Oh, you are alone in this, Anne Marie. You have friends and family supporting you from afar, but even if we were all there, at the end of the day, you are alone in this. This is your hardship to traverse.” And I didn’t totally get what she was saying until years later. Because it was all mine. It was on my shoulders. Nobody could lift the burden but me. They were my meds, my symptoms, my appointments to make, my blood work, my condition, my bills to pay, my stress. And while it seemed harsh at the time, it was empowering, too. It was mine to navigate. And while I had all the support in the world, like she said, from my friends and family, it was my diligence and collaboration with doctors that helped me find my new normal, and eventually—remission.
Some resources:
http://www.polychondritis.org/
https://www.facebook.com/RPASFInc/?__mref=message_bubble
Thank you, Anne Marie! Such great words about taking control of your health and staying positive in the face of uncertainty. Autoimmune disorders can be particularly difficult on a person’s psyche as there is often no known cause or cure. So many of my female friends and family suffer from different types of autoimmune disorders, and as Anne Marie said, it’s all about connecting the dots on your symptoms in order to find the best treatment.
If you suffer from an unusual diagnosis, get in touch with me! I’d love to speak with you.