Q:How do you respond when someone asks you how you are? It's just so hard to lie and say I'm fine or be honest without being a downer.
It depends on who is asking and the context in which they are asking. I tend not to tell new people right away, though sometimes this is unavoidable between my physical limitations and social media. 9/10 times I’m not going to offer up the fact that I am spending any moment of free time resting in my car between classes or that I had to uncurl my claw-like hands for the past week.
Usually if I don’t want to lie or can’t fake it, I say “Hanging in there as always. How about you?” and pretty quickly like to turn the conversation back to the other person. It’s not a lie—I’m always hanging in there and I know I’m pretty tough, but it’s also not “fine” or “good.”
I don’t usually lie with close friends, but I also don’t share much detail unless I’m at crisis-level (not often). I leave it at “I’m flaring” or “struggling” and they know what that means.
I find it more exhausting to talk about it, honestly, on a day-to-day basis than I do to lie about it.
What about you? I know it can be difficult to navigate the social aspect of living with a chronic disease. I wish I had a better answer for you.
Q:How expensive are your medications?
Without insurance, Kineret alone would be ~$3,000 for a 28 day supply. With insurance, it comes to about $400 for a 28 day supply—this may change (hopefully for the better?) as my insurance just changed.
Combine with the cost of five other medications plus supplements and supplies…needless to say, it’s a tough pill to swallow (pun intended) and a source of constant stress.
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. Talk to your doctor and read the research.
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.
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.
PSA: Get a Flu Shot
Yep. I have the flu. Influenza A. If that wasn’t enough, that nasty virus decided to spawn a bacterial respiratory infection. Which means I’ve been off kineret for over a week and I’m a mucus-y mess.
It’s not fun. High fever, diarrhea, glands so swollen and muscle aches so bad they rival the worst rheum flares I’ve ever had. Lots of sleep and fever dreams. My eyes ache. It hurts to breathe. All of this on top of a flare which is surely being worsened by the fact that I am off my medications. PLEASE do yourself a favor and get a flu shot (if your doctor says you can). I’m lucky; I’m very sick, but I’m not hospitalized. The flu can kill.
The vaccines are not live viruses (note: the shots are not live viruses; the flu “mists” are) and while you should check with your rheumatologist/specialist beforehand, they should not be dangerous for the immunocompromised.
Get a flu shot. Avoid this mess. Fa reals. Some people say they make you flare for a day or so (I found no studies to verify this). But you know what? I’d rather flare for a day than die from the flu.
Get a flu shot. Please.
Q:Are you scared of making mid/long-term plans?
Oh jeez. Talk about a loaded question.
Scared? Yes. Apprehensive? Terrified? Anxious? Yep. Especially when my long-term plans involve making financial commitments or commitments to other people.
But I’m getting to the point where I’m learning not to let my fears and anxieties related to my diseases hold me back. I’ve slowly started taking bigger steps outside of the box that these diseases and chronic pain have put me in. Every step is a little easier to take. And sometimes the steps aren’t easier. Sometimes I just take them anyway. Going into medicine is one of those long-term plans that has me petrified. Here I am, taking the steps anyway.
It took me running myself into the ground socially, emotionally, mentally, and physically to realize that even if I sign on for some serious commitment (e.g., grad school) and have to bail—it will not be the end of the world. I have faith in myself that I’ll find my way, even if it’s the hardest thing I have to do. Even if I’m homeless or hospitalized. I’m learning how to have that faith in myself and my ability to persevere. That’s kind of awesome and terrifying all in the same breath.
When I think about making long term plans in the context of a progressive disease and very limited treatment options? Yeah, it terrifies me. And to be really honest, if I sit and think about whether or not I can handle grad school or marriage or whatever ginormous plans I may want to make in the next decade, I panic a little bit. I know Kineret is slowly becoming ineffective. I know there are only so many treatment options. I know they’ve recommended looking into a stem cell transplant. Those fears are all possibilities. And it’ll be what it’ll be. They’ll either happen or they won’t and they will do so regardless of any plans I make or do not make. So instead I focus my energy on the here and now. Life will pass me by—the same number of days will come and go—whether or not I make plans and live the life I want to live to the best of my abilities.
That doesn’t mean it’s easy (newsflash: it’s not easy), simple, affordable, D all of the above. But eventually you just reach a point where you have to say fuck this, I’m going to try and rebuild a new life for myself. That’s the point I’m at right now. I am doing my best to channel all of my fear into those little baby steps forward.
I hope this was coherent. It’s a long process that doesn’t ever really end; we go through this in stages. And you know what? It’s okay to be petrified to make plans in the face of a chronic disease. It’s normal. My email inbox is always open if you want to talk more.