The worst part about having a chronic illness is that the cycle of adjustment to your “new” life. One day, I can run 3 miles and the next I can’t bend my fingers. I can’t get past grieving the life that I have every few days if I still experience it.
Q:What do you love most in the whole world?
Oh my goodness, what a question! I gave this a lot of thought…
I love most that I’ve found ways to enjoy life. I’ve never really known what that’s like before, both before and after I got sick. I love my life more than I hate my pain…most days.
Maybe that sounds really cheesy or abstract (or like a load of BS, and some days it might be), but it’s true. We have a saying here at FSU that we’re “living the dream!" and for the first time ever in my life, I feel like that’s true. I feel like I’m living the dream this year.
Living the dream and telling arthritis to kiss my ass at the same damn time~
College & Chronic Illness: Coordinating New Medical Care
I received an excellent question that has been popping up a lot lately:
I was wondering if you had any advice about managing medical care when you’re starting college? I’m really concerned about how I’ll fit all my appointments into my schedule with school this fall. I’m looking for almost completely new doctors due to a major move and will be moving again for college. Do you think I should look for doctors near my school, near home, or somewhere in between? I’m worried about transportation since I can’t drive, but I also don’t want to settle for subpar care.
This is understandably perhaps the biggest concern for many students with chronic conditions who want to go away to school, and certainly for parents of students as well.
So I have a ton of advice here:
1. Do the legwork:
- Before you go away to school, start researching local clinics and doctors in the area (click to read about how to find a great physician). Call them up and schedule appointments ASAP, and if you can arrive at your new school a bit early, try to see them before your classes start OR early in the semester when the work load is a little lighter.
- Register with your student Disability Office. Every college has one, they’re all called something different. Mine is called the Student Disability Resource Center. SDRC’s help students coordinate the in’s and out’s of a full time schedule/details while managing a disability. When you register with them, they will likely provide you with various accommodations. One of those accommodations can be excused absences from classand extended deadlines on assignments if you need to see a physician in the middle of the semester. You can read more about SDRC’s and what you need to do to register here and here.
- Communication is Key! Believe it or not, most professors really do care. Establishing communication with them early on will be a huge help when you have to miss class for medical-reasons. With the right SDRC documentation and proper professor etiquette, you will not be penalized for missing a class due to medical appointments! Read that link on navigating the professor-student interaction, anon. Half the battle is finding great professors.
- Smart Scheduling: one of the things you might want to try to do is have one or two days each week be your ‘easy’ days—days where you have less classes and more time to get other things done (i.e., medical appointments). When you register for classes, keep this in mind. I would also talk to your school’s SDRC about priority registration—this lets you register early so that you have access to all of the times and buildings available before seats are taken. Usually, freshman are the last people to register…which means less ideal scheduling.
- Best of both worlds (can you hear me singing Hannah Montana here? Because I am, I assure you).When I first transitioned to FSU, I made sure I had a team of doctors at home and a team of doctors here in Tallahassee. Now that I stay in Tallahassee during the summer (and no longer venture 7 hours south), I will be transitioning out of the care of most of my specialists back home. Different things will work for different people, but I would recommend keeping appointments when you go home on holiday breaks with your current doctors, as well as establishing new medical teams.
- Holiday breaks are going to change. Schedule your medical appointments during them. Get labs done, imaging studies done, any diagnostic testing, etc. It’s annoying to spend 4 days over spring break in a clinic while your friends are posting pictures of excessive alcohol consumption and beautiful beaches, but it is helpful. If it gets you down, remember to treat yourself. Self care is important, so if a vacation opportunity arises, take the vacation instead.
2. Things to consider:
- Is your university affiliated with a research hospital? If yes, utilize this!
- Is your university in the middle of nowhere/far from major hospitals or specialists? If yes, consider whether or not driving an hour or two to see a physician with more resources is worth it to you.
- University health clinics are fantastic…but probably not fantastic for managing a chronic disease. It’s great for little things or if you really just need a note to verify an absence, but find a specialist you like.
- It might be tough at first. Remember that it takes time to build a support network. Don’t beat yourself up if it’s not happening “fast enough” or like you see in the movies. That’s not real life! Give yourself time.
If you want to email me personally with the name of the school you are looking at attending, I might be able to point you to more specific resources (and would be happy to do so for any of you).
I will probably continue to add to this, but hopefully this helps. This is a major FAQ, so if there’s something else you’d like to see added, please message me or send me an email: email@example.com
I’ve got a major case of #painsomnia going on, if any of you want to chat on twitter or via ask box, now’s a good time. Going to answer some more questions for the next little bit.
Q:Just wanted to share a great story I live on the second floor of an apartment building and my neighbor who I've only met in passing just brought my delivery of biologic meds from the front door to my apt door, not knowing how messed up my knees have been and that that climbing those stairs for my temperature sensitive package was my Mount Everest today. What he did as an afterthought nearly brought tears to my eyes.
This is beautiful! A little act of kindness can change someone’s entire perspective and make someone’s whole day. You deserved it, anon.
Pay it forward!
It’s that time of year…
Final exams. They are upon us. I have an exam—not including final exams—each week until May 2nd.
I can guarantee my tumblr inbox response, replies, facebook activity, and blogging are going to slow down for a little while.
Although I say that and then using blogging as a way to procrastinate, but I digress.
Have some patience with me over the next month. Show some support for the other #spooniestudent(s) battling chronic pain and information overload.
I hope to have a finals-related post up soon and will have a special somethin’ planned for the next two weeks for student support. So keep an eye out for that announcement.
I was able to run today. I haven’t really posted too much about it, but I haven’t been running—really running—since December. I hike trails and walk at parks, but running has been out of the question for months.
Today though, furious and stressed, I gave up studying, gave up trying to reason with unreasonable people, and drove out to a local state park. And I ran!
My god, I ran.
It was amazing.
For the first time ever, pain didn’t take up my thoughts while running. Everything just disappeared—the stress, the shitty people bringing me down lately, the kreb’s cycle (yes, I went there)—everything. It was just me, the fresh air, cool breeze, a good playlist, the sound of my feet hitting the dirt.
I ran until I found my favourite spot (first photo), where I sat and did a 10 minute meditation exercise I have on my iPod.
I ran the rest of the trails and ended the evening watching the sun going down lakeside.
I am so proud of how far I’ve come. No matter how much pain I am in or how much shit life throws at me, I’m going to be okay.
And you are too!
I hope you’re all able to find an escape. Maybe it’s a book or a song, an art project or a TV show. Certainly it doesn’t have to be running.
Find something that helps you remember what a tiny piece of the universe you are. Find an escape that helps you find a sense of gratitude for something—anything—no matter how small.
Find your strong.
**I changed my Instagram name, so follow me here.
** #findyourstrong is a hashtag started by Saucony, a company that makes running shoes (great ones, I might add). I’m not sponsored by their company in any way, but I do wear their shoes when I run, and their hashtag has always stuck with me—#findyourstrong resonates with me. Don’t be afraid to tag your own #runningwithrheum posts with it too.
Q:Can I give you a solution to chronic pain. Ive helped many. One lady came to me and had been in pain in both hips for 14 years from a car wreck. Her pain level was 10 on a scale of 1 to 10, 2 min later her pain level was 3. I helped her lower both hips to a 3. Ive seen happen for 100's of people.
Well, in a short answer, no. No, you cannot give me a solution to chronic pain.
I mean this with respect and I say this not to attack or insult you, but hopefully to educate you. I get tons of inbox questions of this same nature on a weekly basis. I’m talking 5-10 a week—everything from apple cider vinegar to prayer to turmeric and psychic energy healing.
I do not have an injury that has not or will not heal. I do not have reversible tissue or bone damage. No amount of physical or occupational therapy will completely alleviate my chronic pain. And here’s why:
I have multiple chronic, incurable diseases of the immune system that cause very serious—often life threatening—systemic inflammation. I have “failed” many of the few medications out there and remission is not likely for me personally at this point in time.
And while there are things to help alleviate some of the inflammation and chronic pain that comes with that inflammation—there is no end all, be all solution. There is no cure.
It’s extremely frustrating to receive messages like these. Suggestions are one thing, but solutions? Cures?
I changed my diet radically: no sugar, no wheat, limited dairy. I take a whole host of supplements. I take low dose chemotherapeutic medications and inject myself nightly with very strong immunosuppressants. I exercise. I rest. I take epsom salt baths. I drink 2-4L of water a day. I don’t smoke and I do not drink much. I’ve tried acupuncture, meditation, visualization, D all of the above.
I devote most of my day to managing my pain and taking care of myself, and you know what? I still had a tiny meltdown in my car today from being in so much pain and having a huge flareup these past few weeks.
Pain is a part of me. I hate it, but I am also at a point where I accept its presence in my life. I will always work to minimize it, to mask it, to improve my quality of life, but messages like these? They are infuriating. They are invalidating and they minimize the struggle that millions of other patients like myself go through.
If you want to find a solution, help us find a cure. We need research not just into treatment, but into etiology—help us find the cause, because we will never find a cure if we do not understand disease cause and prevention.