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.
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.
Live With Lidoderm: Chronic Pain DGAF About Your Plans
It’s amusing to me that I’m going to do a live hangout in 3 hours about burn out, compassion, and self care, and I’m in so much pain that I can barely get myself up off the couch—feeling totally blue and burnt out. I was just texting one of the other panelists, and it dawned on me—I need this panel just as much as anyone else watching. Self care is a process. You have to learn and practice self care. It’s an art form. Mastery takes years—maybe even a lifetime.
I may be doing this live hangout with lidoderm on my face, seriously. Chronic illness/chronic pain doesn’t care what plans you’ve made or what appearances you have to make. You guys know that better than anyone.
I hope you’ll all watch tonight. We’ll be talking about how easy it is to get burned out when you’re a ‘professional patient’—from both a treatment standpoint and an advocacy standpoint—and why self care is critical for both patients and providers (medblr community, I’m looking at you). I’ll be sharing a little bit of my own self care story as well.
"We" being a diverse panel—from chronic pain patients to cancer patients. We’ll also have Dr. Becker Schutte, a licensed psychologist who works with chronic illness patients. This is a must-watch panel if you’re struggling with compassion fatigue, depression, anxiety, burn out, self care—you name it.
We’ll be taking questions live, so watch and send in your q’s—we’ll answer them!
The live video stream will automatically post to Stanford’s MedX Live page at 8:30 pm EST. ’See’ you all tonight :)
Chronic Illness Problems 01/11/14: The Human Barometer!
- Knowing what the weather is going to be like before you even get out of bed in the morning
- Who needs the weather channel when you have arthritic joints or an autoimmune disease?!
Low-Inflammatory/Ketogenic Diet FAQ. What changes work for you guys?
I’ve been getting a lot of inbox questions asking what my diet is like and if it could work for some of you, so I’ve decided to answer all of them here in a post.
I preface this by saying this is simply what works for me and my body. Please, please, please do your research, talk to your doctors, have baseline labs done, etc, before you decided to make any drastic dietary changes.
What is a Ketogenic diet?
- A ketogenic diet is a medical diet used for patients with different neurological disorders, mainly epilepsy
- It is a low carbohydrate, high (healthy) fat diet, moderate protein diet
- In my case, it is used differently than it would be used in epilepsy patients.
- It’s similar to the Atkins diet and in my case, is full of low-inflammatory, fresh foods
Why did you go on the diet?
- I was looking to eliminate foods to see if gluten/wheat, sugar, etc was making my inflammation worse, to lose weight, and improve my overall health
- It was a lifestyle change that I felt I needed
What do you eat?
- Veggies—spinach and romaine lettuce, broccoli, brussels sprouts, cauliflower.
- Meat—lots of chicken breast and grassfed red meats
- Nuts (except peanuts—legumes are high inflammatory), cheeses, EVOO-based dressings, natural/organic peanut butter in tiny amounts (aka not Skippy that’s filled with sugar), very dark chocolate, eggs/egg whites, Quest protein bars, avocado, chicken broth/soups, coconut oil, etc.
- Things I don’t eat: wheat, refined sugars, most fruit (except for berries), starchy veggies, beer, juice/soft drinks, milk (I try to limit dairy intake as much as possible), nitrate-heavy or processed foods.
- I plan all of my recipes, do food prep on weekends, and make my meals extremely ‘spoonie-friendly’—low fuss, little mess, easy to make recipes are a must.
Did it help your arthritis?
- Somewhat. It’s made a huge difference in some of the arthritis-related skin issues I was having, but it’s not been enough to get me to remission, that’s for sure. It is not a cure.
- That said, I’m sticking with it anyway. When I ‘cheat’ and have pasta or bread, I feel like complete crap now and definitely feel it in my joints—a sign that I can’t and won’t go back to a high or even moderate carbohydrate diet.
- It has eliminated 2/3 of my migraines and improved my endometriosis-related symptoms. And I’ve lost 40lbs in the past few months, so that’s a plus too.
Should I try a diet?
- If you want to make drastic nutritional changes, please consult your doctor first and foremost. What works for me may not work for you. A high fat, low carb diet is not for everyone—it’s a lifestyle change.
- If you’re hoping to make a pretty big lifestyle change, take on the task gradually. Gradually modifying your habits can make it easier to adjust to a new way of eating. E.g., slowly decreasing the amount of refined sugar/crap in your diet is probably going to be easier than cutting it all out and then craving some Cheetos big time! Or not! Do what you think will work for you.
What does a day of meals look like for you?
Here’s what my meals today were:
- 2-5L of water
- Breakfast: a Quest protein bar and a cup of chicken broth with two tbs of cream
- Lunch: shredded rotisserie chicken breast with caesar dressing and lettuce
- Dinner: grass fed London Broil and sautéed brussel sprouts or broccoli with garlic and bacon
- Snacks: two pieces of cheddar cheese,
- Dessert: a tiny bit of sugar free whipped cream and a few tiny pieces of 85% dark chocolate
Where can I learn more about a low carbohydrate or low-inflammatory diet?
- This is an exceptional forum. There are a ton of patients here so feel free to ask any questions about autoimmune/inflammatory diseases and this diet. Read the side bar links for FAQ.
- This is a forum specifically for women considering or on the ketogenic diet. Lots of great insight for women with PCOS as well on this site.
- Recipe forum
- A thread about how to eat LCHF on a budget
- Keto threads that discuss autoimmune/inflammatory diseases
- There’s been promising research published about the ketogenic diet and diabetes (type II), thyroid conditions, PCOS, inflammatory diseases, and even cancer. You can find links to them in that first forum.
- Consult. Your. Doctor.
So that’s that. It’s very strict and I definitely miss reeses peanut butter cups, but it’s worth it. Let me know in the comment section or my inbox if you want me to post any of my easy, chronic pain/illness-friendly recipes, I’d be happy to do so.
I want to hear from you guys: what dietary changes have helped you? Have you found a diet that helps your inflammatory or chronic condition?