Q:Do you have any new study tips lately? I'm struggling with keeping up and my chronic pain and your posts have been a life saver for me
Sorry to hear you’re struggling—I know how hard it is. If you want to email/message me off anon and tell me the kind of material you’re studying, this might be more helpful.
But I will say that more than any other study “tip,” time management has become my bff this semester. I have to plan for flares, meaning I have to get ahead of my disease when I’m feeling good and would rather spend my ‘feeling good’ time doing something other than studying. Even if it’s just an hour, spend some time on your better days getting a half step ahead.
The other thing that helped me was making a commitment to a study group. If I commit to them to read a chapter or learn a concept by a certain date, I am less likely to put off doing that work when in pain. I know this doesn’t solve the pain issue—I get that—but sometimes it’s easier to focus on the bigger picture when you have a group of people supporting each other. So consider creating a study group and meet with them often.
- Important: find a group where you feel comfortable teaching each other. If you can teach someone, you understand the material. And that’s a great way to help each other learn if you are behind or struggling.
Schedule a day or period of time where you do nothing school-related. For me, that’s Friday nights. I do not study or do anything school-related on Friday nights. Period. I wine down (see what I did there?), take a bath, relax with friends, binge watch Netflix, catch my drift? Do something that relaxes you.
Get a planner. If you’re not someone that uses a planner, use one until it becomes a habit (this takes time) or find a method that works for you. Prioritize what needs to be done.
Break tasks down into tiny digestible pieces. The smaller the task, the easier it will be to tackle when you’re feeling overwhelmed. Do your best to take care of yourself. Eat breakfast. Sleep at least 5 hours, stay hydrated, find a great study playlist, and take some deep breaths. I know it’s hard and yeah, you know what? There are going to be weeks when you’re running on no sleep, not eating well, and you’re cramming (or not, in which case you need to teach me your ways). So just do the best you can.
I believe in you :)
There are more study suggestions here if you’re interested.
PSA: Melatonin Can WORSEN Autoimmune Disease Symptoms/Inflammation
Last week I picked up some Melatonin in hopes of relying less on prescription sleep medication. Doctors gave me the okay to try it. I took it Saturday, Sunday, Monday, and Tuesday night. By Sunday night, I was 99% bed-bound. Monday was miserable—I spent the entire day in bed. Tuesday was miserable and I slept all but one hour in bed. So last night I decided not to take it and instead take my normal sleep medication (which happens to be a muscle relaxer) since my muscles were so badly inflamed.
And I woke up today still feeling shitty, but significantly better. I was able to function through my bio lab. I was able to shower. I could open the fridge and lift a pitcher of water without horrible pain.
So tonight, I went to take melatonin and right as I picked up the bottle it hit me: could this be what is triggering a flare? It is the only variable that’s changed in the past week. A quick google search confirmed that lo and behold, melatonin is known for its tendency to stimulate/increase inflammation and worsen autoimmune symptoms!
In a 2007 issue of the British Journal of Clinical Pharmacology, a study published demonstrated that rheumatoid arthritis worsened in participants who took melatonin. This study supported the results of other studies, which found that melatonin is proinflammatory, meaning it can stimulate the release of inflammatory cytokines.
I will say I’m pretty disappointed. It was working so well in terms of getting me to sleep through the night.
So yeah. PSA: if you incorporate melatonin into your med routine and find yourself absolutely miserable, consider stopping it to see what happens. Better yet, avoid melatonin if you have an autoimmune/inflammatory disease.
Have any of you experienced this as well?
A Special Birthday, A Special Gift: Rare Disease Day
I was born on leap year. February 29th, 1992.
And for the past four years, I’ve hated and dreaded my birthday. For one reason or another, there were tears shed each year on my birthday. Whether it was due to pain or not-so-awesome people I used to call friends, birthdays kind of sucked. Honestly, I’ve been dreading today for a few weeks now.
And yet, my birthday is a special day, and not just because it only comes every four years. It is Rare Disease Day (which falls on the 28th when it’s not a leap year)—a day close to my heart. Friends and family laugh about me having three rare diseases, being born on leap year, and being a rare disease advocate a “cosmic joke.” At this point I suppose I’m inclined to agree :)
Having three rare diseases, having no rare-disease literate doctor, and having so few treatment options defines all aspects of my life. It defines what I do with my day—including my birthday—and this year I wanted to stop the string of depressing birthdays I’ve had for the past few years and do something meaningful for Rare Disease Day instead.
Only, someone else did that before I even had a chance. A fellow Stanford ePatient, a IBD/Crohn’s Disease advocate, and rare disease advocate, Carly Medosch, surprised me this week by representing me at Rare Disease Day at our capitol. It was a complete surprise.
Carly printed out my recent blog post regarding Rare Disease Day and took printouts with her to the capitol, where she has handed them out and shared my story with state representatives and other legislative aides.
And then, this: Carly and MedX ePatient advisor/blogger AfternoonNapper
And then, this: a lovely woman from Florida who has agreed to share my blog/blog post with her congress people (!!!!).
And THEN, this:
This is Jonny Lee Miller. He plays on Sherlock Holmes on CBS’s Elementary (shoutout to him also being in Trainspotting, I’m a fan), and he also runs a NPO for a rare disease. He spoke on a panel today for Rare Disease Day, advocating for others, and was kind enough to wish me a happy birthday and read my blog(!).
Little did he know, that the prosthetic leg he used as a prop in this season’s episode two was my grandmother’s prosthetic leg. CBS purchased the leg from my family this past fall. Life is really freaking unbelievable that way, isn’t it? My grandmother would be so proud that her prosthetic leg ended up in the hands of a rare disease advocate who works alongside me and spoke on behalf of me and many other rare disease patients. She would be so proud.
The kindness of my MedX family, my friends, my new LSH family, has just been completely overwhelming. Driving home tonight, all I could think about is how painful this month has been physically, and yet, it was full of nothing but positive news, new opportunities, and new people.
Thank you Carly, Sarah, Jonny Lee Miller, Global Genes, and the rest of you for making this week and this birthday one I will hold near and dear to my heart. I can’t tell you how much it—and you—mean to me.
Tomorrow I will still be handing out 100 Global Genes rare disease awareness ribbons as planned, only now with less anxiety and sadness re: my birthday and an unbelievable amount of gratitude and love instead.
Please follow Carly, Sarah, and the #wrdd14 hashtag on Twitter to keep up with this week’s Rare Disease Day events, and don’t forget to take a picture raising/joining your hands to show that you care about rare. I will be posting mine later today :)
Thank you for making this day and this week so special. I’ve never felt more like I belong and more loved in my whole life. I am sitting here writing this with tears—happy tears!—and I mean it. This community on tumblr, twitter, in person, online—you all mean so much to me. Every person that reads this blog has made this journey possible. And I love you all for it, I really do.
Q:You wrote that you listen to a playlist while you study to help keep you awake to fight fatigue. Can you post it?
Yep, pain steals my attention/focus pretty quickly if I don’t have music and the right environment; music is essential even if it’s just barely noticeable. Sometimes I listen to really uptempo EDM (which keeps me wide awake), sometimes rap/hip hop, indie, whatever. The type of music depends on what I’m studying.
I can post a Spotify or 8tracks link later if there’s interest? Like this post or send me a message if you’d like to see a playlist.
Today I’m spending my entire day studying biology for a massive exam tomorrow. Currently listening to an album called The Awesome Wave by Alt-J. It’s fantastic whether you’re studying or not. Click for a Youtube link to the album.
Check back later for a playlist, anon. :)
Edit: holy crap, okay, playlist it is! Here is my 8tracks page. There are 3: Study Part I, Study Part II, and Forge Ahead, which is the mix I put on in the mornings when I need to tackle the day/kick some ass when pain is high.
Fatigue means being so physically exhausted and weak that instead of doing your injection in your bathroom where all of your supplies and sharpbox are, you do your injection laying down. In bed. No prep (do not do this).
I am out of spoons. My cup of care is empty (along with my fridge and bank account this week). Is it spring break yet? One day at a time, one day at a time. Face forward, move slow, forge ahead.
Particularly awful pain (understatement) + pneumonia + pleurisy = muted personality. It’s like my brain just goes NOPE, you gon’ shut down until this is over~ focus is lost and I become this quiet, awkward person who is constantly medicated or distracted.
Three weeks off of kineret went from being frustrating to horrible over the past four days. I can handle a flare and I can handle being sick, but no kineret and this sick at the same time just doesn’t work for me (though I feel like I’m doing better today re: infections, finally).
I just want to feel like myself again. I started to get me back—Emily—I started to get my life breathed back into me. I want to enjoy people again. I want to get on top of my classes/studying again. This semester has been rough for my body. It’s incredible to me how fast things go downhill. I was fine. And then I wasn’t. There was no slow transition into me doing poorly. I was finally coming out of the new-routine-induced-flare and then I woke up with the flu. And here we are, 3 weeks later. I know I’ll get back to a good place, but any setback in quality of life is emotionally devastating—no matter how small or short-lived it might be.
I can’t say I cry or get too emotional over this whole chronic-illness situation very often anymore. Occasionally, yeah, but less than a year ago. It’s become my ‘new normal,’ but I’ll be damned if I’m not having a total sob fest (do not recommend with pneumonia, by the way, not a fun time). Sometimes, this just sucks. It’s okay to whine, moan, and cry about it. So that’s what I’m going to do for now. I hate these diseases so much. Autoimmune and autoinflammatory diseases can kiss my ass.
Someone please find a cure so that we can avoid devastating infections and flares. So that myself (and others) don’t ever have to spend another second at 1am uncontrollably shaking with pain the way I am right now.
One in Billions: Rare Disease Day 2014
Two years, three rare diseases, all interconnected. To put what I have lived through into a few paragraphs is next to impossible. There are constant holes in my stories; gaps of time filled with complex details of symptoms and experiences too complicated to cram into a single post. The patient story is hardly a linear one. With symptoms cycling in and out for years, we are constantly going back in time, back into our stories, back into our medical files only to find new diagnoses, new patterns. Very little about being diagnosed or living with a rare disease (let alone three) is straightforward.
I was diagnosed in January 2012. New year, new diagnosis. I had a long list of genetic tests performed and was told I’d hear back in 6 weeks time. It was not a good experience at this particularly notable hospital—a hospital and program that specializes in medical mysteries. It took nearly 4 months to even get someone to agree to release my test results back to me. I received a letter of apology in the mail containing the name of my mutation, the scientific-details of that mutation, and a paragraph saying that the world-renowned clinic hadn’t seen this before, but they wished me well.
I didn’t learn about TRAPS through a physician. There was no physician to meet with, no specialist to see. My rheumatologist stared at me—deer in headlights stare—as I read the letter: autosomal dominant autoinflammatory disorder, periodic fever syndrome otherwise unspecified. Likely a newly documented mutation for a disease called TRAPS (or a new syndrome very similar): Tumor Necrosis Factor Associated Periodic Syndrome. Taking the genetic report from my hands, her and I pondered the findings together. “Interleukin 1,” she said, “we will try an anti-IL 1 drug, Kineret. This is your best shot.”
Rheumatology referred me to immunology. At the end of the consultation, the immunologist looked at me and said, "I’m sorry, but what is it you were hoping to gain, exactly, from an immunology consult?" I was told that yes, it’s clinically significant. Yes, to consider stem cell transplantation as an option when I inevitably run out of the three medication options for this type of disease. But this..this was beyond his scope of expertise. Good luck.
So I went home. To read, research, teach myself fundamentals of genetics and immunology (which I am sill learning) alongside the biology I was already studying in school. All while going without medication. Systemic arthritis without medication is a recipe for guaranteed disaster and possible permanent damage—even death in the most severe cases.
For another six months, I struggled with my insurance company, my physicians, my low socioeconomic standing, fighting for a medication that was my “best shot” at quality of life. My best shot at life—unattainable because of exorbitant cost. One rheumatologist described to me that treatment options for many rare disease patients sit, waiting, behind an “unbreakable glass wall.” Patients suffer for years—many die—because they cannot afford the few treatment options available. With just enough income to keep me at the poverty line, I was unable to receive full funding assistance. I fought for that medication the way I fought to get out of bed. I fought to find resources, help, anything, anyone, while I also fought to brush my teeth every morning. I found myself constantly internally screaming, why does no one fight for me or with me?
My journey into advocacy had long been underway by 2012, but this time I was rocket launched into a new level of participatory medicine. The choice was crystal clear: learn everything you can and survive, or remain isolated and wither away. I got online. There was not a single active patient blog for any of the rare diseases suggested to me, nor a single organization. The internet—an abundant world of patients, providers, and organizations when I was diagnosed with Still’s Disease in 2011—suddenly became a wasteland.
I spent so many nights laying out on FSU’s College of Medicine green, staring at the stars, wondering if there was someone else out there living this same experience. Was I really the only one in billions? Would I die of amyloidosis? Would I spend my 30’s in a wheelchair? I started tagging my own blog posts with tags like “traps” and “autoinflammatory” in hopes that maybe, just maybe, someone down the line might find me—that we would find each other.
Here we are, two years later almost to the exact day, and someone has found me. Even with a disease documented less than 200 times worldwide, I am not alone.
We are rare in type, in clinical presentation, but we are not rare in prevalence. We fight for even a shred of advocacy and awareness, and we fight desperately for research in hopes of creating new treatments. We fight to shatter the glass walls that keep many of the already few treatments out of reach.
We are desperate for physicians who have not only the knowledge, but the humility and empathy to form a partnership with the complicated rare disease patient.
I still lack a rare disease-literate doctor. I still struggle to pay thousands of dollars for a medication that will inevitably stop working (and has already lost its efficacy slowly). I put off appointments because of travel expenses, time, and energy. Caring for myself each day and learning how to live again is in and of itself as intense a battle as coordinating and navigating some kind of professional medical support system. I will run out of options, resources, but never hope. In a system that drowns out the patient voice, I refuse to be silenced.
If you care about me, you care about rare. Speak up. Join the fight. Fix the system. Get involved, engaged, empowered. My disease my be rare, but my story and experiences are not. Show your support, raise and join hands for Rare Disease Day.
So, bad news:
That influenza turned into sinusitis which turned into pneumonia in my right lung.
I’m really, really sick. Which means I’m going to be bad (“even worse” is probably more accurate, but that’s life with rheum for you) about messages/emails for the next few days.
To the anon who just messaged me today an important question about housing/college/dorms and being immunocompromised—please email me.
Edit: you guys are seriously the sweetest. Thanks for all the love, support, and kindness. <3