Q:Hello there~ I just wanted to say thanks a lot for your blog and everything you're doing to promote awareness about chronic illnesses. I swear sometimes I feel alone in this and it gets really hard and frustrating to try to explain my situation to everyone. A lot of your posts are really helpful, especially the series about college since I'm a freshman this year about to go into my second semester. Anyhow, didn't mean to ramble, just thanks a ton! You're awesome!! :D
This is really sweet. Thank you so much for the kind words. You are awesome and most definitely not alone, but I know it feels that way so much of the time.
My inbox is always open, let me know if you ever need any help. Hope this semester is going well and you’re able to enjoy college! Congrats on getting there—it’s a big deal in and of itself :)
Q:Thank you for these posts. I was diagnosed with my chronic illness last week (the second week of the semester), and I've already had to miss classes and it's just a lot on top of my junior year classwork.
You’re welcome! I’m sorry it took a while to get back to you, anon. Starting off a new semester with a new diagnosis..jeez that’s tough. Been there, done that. I’m sorry you’re struggling.
Please feel free to email me if you want to talk further or need someone to help guide you through the next little bit. I’m happy to help: email@example.com
Hang in there.
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:Have you ever been on Imuran? Were there any side effects?
Nope, haven’t ever been on Imuran. As for side effects, have you talked to your doctor at all? Any followers want to chime in here?
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?
Q:Do you have a snapchat?
I do, but posting it publicly for 31,254 people to have miiiight not be the best idea. I feel like that could be fun…
Or awful. Either or.
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.