Though they're still trying to figure things out, my doctors diagnosed me with an extreme case of chondromalacia, chronic patellofemoral pain syndrome, & patella maltracking. Some days I can barely walk or stand for more than a few minutes. Unfortunately, when I tell people about it, they act like it's not a big deal so I find myself hesitating to call it chronic illness/pain. But now, thx to Tumblr, I'm starting to think that maybe that's just ignorant and insensitive people? What do you think?
Maybe calling it a chronic condition would make you feel more comfortable? Ultimately the label does not matter, clearly it is impacting your daily functioning and regardless of whether it’s a lifelong condition or a temporary condition, it still sucks and you’re entitled to feel that way. I think you’re right, but I’d say it’s not always willful ignorance. Most people just don’t grasp how frustrating or limiting a chronic condition of any kind can be. We can’t necessarily blame them for that, but we can educate them and give people perspective they may not have had prior.
Sorry you’re dealing with this, I really hope you’re able to get some more answers and an effective treatment plan. Best of luck to you, anon!
Radio Silence: Adventures in Leaving a Physician's Practice
Recently, I left my rheumatologist’s practice. There were two major reasons for this: I live 7 hours north of the practice and no longer travel south, A, and B, major communication breakdown.
It took me over a month to get a single refill of Kineret and countless voicemails returned—something that a single phone call and a small amount of paperwork would have resolved. I went without Kineret for weeks in April.
In my leaving the practice, I need my medical records and a referral to a clinic closer to where I live. I have called my rheumatologist’s assistant every week for the past three weeks (today marks week three), leaving my reason for calling, my name and number, etc.
No response.I had the new clinic fax a referral form last week. No response.
These administrative issues and breakdowns in communication within a physician’s practice have real-life consequences. We’re not just talking about a referral form that gets delayed or a phone call that doesn’t get returned: we’re talking about a patient whose care is being delayed while they are not well. This is my life. I’m in an active flare that seems to be intensifying by the day, and would really like to establish myself in a clinic closer to home. Without this referral, I cannot receive care.
How this is seen as not important enough to address within a 21-day period is beyond me. I get that this practice is extremely busy. I understand my physician is working hard, is likely stressed, possibly underpaid and understaffed. I understand—the system makes it terribly difficult for providers and that is not the fault of my rheumatologist by any means.
But at the end of the day (or a 3-week period…), when that phone call doesn’t get returned and that referral form doesn’t get faxed, who goes home with a paycheck and who goes home with pleurisy..?
Trigeminal Neuralgia in the Emergency Room: The Worst Experience I've Ever Had
The pain started around 11pm. It’s been a while since I’d had an attack at all, so I figured I could push through it the way I usually do. I’d never gone to the emergency room for pain before, but this was different. I quickly found myself in the worst pain I have ever experienced. Ever. And for perspective, I’ve had two thoracotomies, chest tubes, urethral stents, you name it. This was the worst pain I had ever experienced.
My friend got me to the hospital and they took me directly back—drooling, dripping snot, swollen eyes, and moaning. My hands were shaking and I couldn’t even fill out the paperwork. The triage nurses were fantastic and understood the intensity of what was happening. I was brought back into a room right away.
I was treated by a nurse practitioner who took one look at me, did no neurological exam, and said “we really don’t know how to help you since opioids don’t work for neuropathic pain.” At this point I was barely able to speak, and made it clear that I came in because I had never experienced pain like this and obviously was unable to treat it at home. I did not demand narcotic pain medication, however I demanded finding SOMETHING to get my pain/inflammation level down.
Perhaps the rocking myself back and forth, moaning, skyrocketing blood pressure, swollen eyes or swollen face, shaking, not to mention the dry heaving into a blanket didn’t give away the fact that I was in agony.
A registration tech enters the room to take down history and insurance info. She is so upset by my condition and the lack of responsiveness from my nurse(s)/overseeing attending that she actually leaves her responsibility to find out what the my “team” of providers were up to. She did this not once, but THREE TIMES. Without me asking. And each time she would just shake her head, say she’s sorry, and try to soothe me. That woman is a fantastic provider, let me tell you.
45 minutes goes by. I sat on that exam bed rocking myself back and forth. While I sat there, I imagined myself yanking out my back molars with a pair of pliers. The friend that I was with, Viv, was able to speak for me since I was absolutely unable to advocate for myself. She goes and finds the staff, asking why they are not starting a line when I’m in visible and audible agony? They tell her they’re working on it. Another 20 minutes.
Eventually a nurse comes in with a needle. She gives me the shot in my arm and mentions that she gave me Ativan. Great. So you’ve given me IM ativan which takes about 30 minutes to work (only they don’t tell us this until Viv harass them about why it’s not working) for a patient who is WRITHING in pain. All of the clinical physiological indicators of a 9 on the pain scale were present…and you’re using medication delivery options that take significantly longer than if you would just infuse them..? If I was male or had a kidney stone or a severed limb, would you be handling an emergency like this?
She leaves again. Another 45 minutes with zero communication. Pain has not changed and no one is even asking me about my pain level. Someone is standing outside my door watching me with a weird smirk. I didn’t need sedation. I needed pain/inflammation relief. And the sedation did not sedate me.
I thought maybe it was the level of pain making it seem like we’d been waiting a long time, but it turns out we actually had been waiting nearly another hour. So I was no longer hyperventilating, instead I was curled in a ball rocking myself back and forth. Snot and drool still dripping, bed sheets still being gripped, moaning not stopped. Agony. My face is on fire. Please just make it stop. Viv goes out into the hall and asks what’s going on and what their plan is—I told Viv specifically not to demand pain meds, as we had very much gotten the vibe that they weren’t taking me seriously. Viv found them sitting at the nurse’s station on their phones. Their only plan was to give me the Ativan and let me sit in that room until the worst pain I have ever experienced just magically resolved itself, until I was “no longer anxious.” I had never been anxious. I was in agony! Why was this so difficult to understand? I honest to god felt like I was being passed off as the “hysterical woman” kind of sexist diagnosis thing.
A nurse comes back in and asks me if I think I’ll be able to take a pill now that my anxiety is better. At this point it’s evident that they are definitely not going to start an IV line on me and that they very seriously don’t care. IV steroids are out of the question.
So she brings me a cup and two pills. I ask for a straw, since it’s the only way I’ll be able to manage to get these pills in my mouth and down my throat. I get them down. She makes a comment about how “now you must be having jaw pain?”
No. No, I’m not having jaw pain, I’m having trigeminal nerve pain of the branch that runs through your face. So movement, vibration, touch, drinking, temperature changes are AGONIZING. You’d know that if you’d asked me even a single question or determined my chief complaint.
I ask what she gave me? Percocet. The exact same medication I have at home—the one that didn’t work. Now I know using opioids for neuropathic pain is a challenge, often futile. But that is NOT a reason to not try to relieve a patient’s very obvious agony. Steroids, maybe, ANYTHING. That’s like saying “well we’ve never seen a broken limb quite like this, so we’re not going to treat it.”
Dr. Douchebag finally comes into the room 3.5 hours later. And proceeds to mock my attempt at covering my face in lidoderm. Viv and I exchanged glances. Rude. At this point I was getting my ability to speak back, but I was whispering as to not move my mouth as much as possible. Dr. D snidely remarked about why I found it “necessary” to whisper. And then got annoyed when I tried to spell out a medication and he couldn’t understand me from across the room.
It was apparent from the moment I was brought back into the room that they didn’t want to put in the effort. Refusal to treat, refusal to consult with another colleague, refusal to even google treatment protocol. Maybe that was because they were trying to wrap up their shift, I have no idea. But they didn’t try, that much was clear. And this was only compounded not by poor communication, but by NO communication at ALL. These providers did not re-assess my pain, no vitals, no nothing! It was like they decided to take a late-night break and ignore patient responsibilities. They didn’t disclose their plan, didn’t disclose what medications they were administering, nothing. We were just sitting there in that room for hours while I writhed, cried, drooled, dripped snot down my chin, fantasized about yanking out my teeth, my right eye twitched, and begged someone to make it stop.
I have never felt more helpless. I’m a big believer in saving my 10’s on the pain scale. But I’ll tell you what. That was a 9.3. It was the kind of pain that makes you want to actually remove your teeth or end your life. I don’t ever want to experience that again.
The best part? Upon leaving they handed me discharge papers: “Trigeminal neuralgia is a highly distressing and disabling pain disorder. Seek immediate treatment at ____ Emergency Room should your pain become unbearable or your medications fail to work.”
I learned the meaning of that word tonight. Unbearable. I deserved better. That was just torture. What took hours could have taken a whopping total of 30 minutes if they had just started a line. But of course, that would require them to take me seriously.
I did my part: I brought in my meds, letters from my current doctors, my medical records. I was polite, did not demand certain drugs, did my best to be understanding of staff needs and protocol.
So, Tallahassee Emergency Room, I will not be coming back for this “highly distressing” emergency situation (should it ever happen again). I do not know what is more terrifying: agony so intense you actually seriously think about pulling your own molars out, or the fact that the largest local medical institution is willing to write off someone’s agony as anxiety in order to avoid a lengthy trail of paperwork at the end of a shift.
Edit: There are some really amazing comments in the reblogs, the response to this is more than amazing. But I just want to make something clear: this is not us vs. them, patients vs. providers. These three individuals in charge of my care are the minority. I blame those three people and it’s true, I have empathy for them— how much stress they must be under in a broken system in the middle of the night in in urban emergency room. But there is no excuse for the care (or lack thereof) I received. Most importantly: not all doctors, nurses, nurse practitioners are like this. We as patients have to remember not to make generalizations about our health care providers, they same way providers need to treat us all as individual patients/people.
And absolutely, I will be filing a formal complaint and taking it further. No, I sure as hell am not paying that medical bill! I will identify which ER this occurred at when I know what the next step is.
Hi I was just wondering if there is a test for the chronic disease you have? and if so have you tested positive? xx
Kind of? Still’s Disease is frequently a diagnosis of exclusion, meaning there is no single diagnostic test that says positive for still’s disease and doctors will eliminate all other possibilities. Often the diagnosis is made based not on blood work alone, but clinical presentation—Still’s follows very unique patterns (salmon colored rash on forearms, fevers at specific times each night associated with joint involvement, etc etc etc). But, there are lab markers that indicate still’s disease being likely: high ESR and CRP (inflammation markers), high ferratin levels, high white blood cell counts.
As for the genetic autoinflammatory disease I have, Mayo Clinic was able to identify the specific mutation responsible for my disease, but the mutation has not been seen before thus they don’t know the long-term implications of my variant of disease (which they believe is a new variant of TNF Receptor Associated Periodic Syndrome).
I am off to college next year and I'd like you to know that I really appreciated your post on what to do with going to college. It's a bit harder for me to get advice and help seeing as my father doesn't believe I have Crohn's colitis and my mother is firm in her belief that I shouldn't take medication for it, while diet changes have not helped and my medication is the only thing making a change - and barely. Your blog, however, is a constant source of advice and support, so thank you. :)
Well first off, congratulations on getting into college and venturing off on your own! That’s awesome!
I’m really sorry to hear that your parents aren’t as open minded/supportive as you need them to be—I know how that feels and I know it’s tough. Sounds like you’re a pretty ambitious person with a good head on your shoulders regardless. College with a chronic illness is tough—no doubt—but you’re going to do great! It’s possible to make it work, just remember to give yourself a lot of time (more time than your peers) to adjust, don’t be too hard on yourself, and perhaps most importantly: don’t be afraid to reach out and ask for help when you need it.
Thanks so much for the kind words, they mean the world to me. And again, congrats. You’re taking a huge step and that’s pretty damn awesome, anon. Wishing you all the best!
There is yet another Methotrexate shortage affecting patients. If you’re due for a refill any time soon, PLEASE call your pharmacy and make sure it is available or start hunting for places where it might be available. More details in the link provided.
Does it ever make you frustrated that your diet didn't cure you? I cut out everything that people suggested and it didn't significantly change my joint pain. I feel like a failure in some way. I guess I had held out hope that changing my diet would do more for my autoimmune issues.
YES. Yes, I know that frustration all too well.
A diet not being a cure is not your failure. Your body did not fail! And the diet did not fail either! Diet is a great tool and treatment to help reduce inflammation—especially if you have specific food sensitivities—but it is by no means a cure. If a gluten/whatever-free diet could cure all autoimmune diseases, don’t you think we would be able to do away with biologics and other medications?
Does your diet have other benefits and is it worth staying on said diet for the benefits? If so, great. That’s a huge achievement—lifestyle change is always difficult.
I’m really sorry to hear that diet overhaul wasn’t a game changer for you. I know how hard that must be for you. I get where you are coming from—I don’t think I realized how much hope I had been holding onto until my own diet didn’t magically reverse my inflammation. But, that’s life. And that’s autoimmune for you. What works for some will not work for everyone. Remember that your disease and treatment is not a one-fits-all thing, and that the success of others (in this case, success with diet as a treatment) is not your failure.
I know it sucks, anon, I really do. If you ever want some other dietary resources, feel free to message me. Sending you a lot of love and wishing you nothing but the best.
There is a thin line between a “new normal” with active inflammation (I am never entirely pain or symptom-free) and a “big” or “full on flare. For the past few days, I’ve been riiiight on the edge of crossing that line. My fatigue caught up with me in a way it hasn’t in quite some time and my GI symptoms have resurfaced. It’s not uncommon for me to flare when the summer heat (and my stress level) starts to get intense, but I know where this is headed.
So today, I quit.
I quit a commitment I made to a volunteer position a few weeks ago.
It was demanding, ~9-10 hours a week + the studying for the training. It was challenging me and I really believe I would have benefited from sticking it out. But, something had to give.
Learning how to take a step back without feeling inefficient, incapable, incompetent has been an enormous challenge for me. I’m still learning. Last month, I reached out to friends to ask them to take the lead on certain projects. Sent emails to certain mentors/leaders to ask them to support me taking small steps back. It feels inherently wrong—I have spent my life swimming against the current; to suddenly change course mid-swim feels wrong. But the way I grew up was “wrong.” I don’t always have to swim against the current. I don’t have to struggle—there is not always success or strength in the struggle.
I want to give 100% to Medicine X. I want to give 100% to advocacy. I want to give 100% to academics. I want to give some serious effort to my social life and community work. And perhaps most importantly—I need to give my body 100%. I can do these things, but it’s a delicate balancing act.
I did the right thing, made the healthiest decision for my body and mind, and this isn’t “failure” or “incompetence.” It is my new normal, and it’s okay to embrace my new normal instead of fighting it—even when others do not understand the way I delegate my time and energy.
I was able to see a health decline incoming and take proactive steps to (hopefully) prevent that decline from turning into a major downward spiral. That’s a little victory as far as I am concerned.
I am tired. I have been tired.
So I quit. I’m sitting this one out. Letting go. And that’s okay.
I’m wondering, how many of you struggle with finding balance? Do you struggle with saying “no” or taking on too much? How do you overcome this or learn to balance your priorities better?
The last Design for Health class of the semester will go live at 9PM EST/6PM PST here! My speech is in the first 5 or so minutes of the class, but please watch the duration of the program—it’s a fantastic watch for patients and providers alike. Med students, specifically, this is for you.
Each class is accompanied by a live discussion online using the hashtag #MedX.
We will be taking questions from twitter, so please tweet Chris Snider @iam_spartacus with your questions or comments.
Med students/providers looking to preserve your anonymity: join under a pseudonym and send your questions—we need to hear from you, too, not just patients.
A huge thank you to everyone who submitted photos. unfortunately, I did not receive any input from health professionals or health students. But the patient responses were absolutely fantastic. I was unable to include them all, but the ones that didn’t make it in will be included in my speech slides in September.
Do you want your photo in my presentation at Stanford? Representing Tumblr Patients and Medblr at MedX
As mentioned, I am giving a speech at Stanford School of Medicine next week. Much of my speech will focus on giving patients a voice in our deeply flawed healthcare system and the communication breakdown between patients and providers. This means I’ll be sharing my story and discussing what it’s like to be invalidated by physicians for years, etc etc etc.
I would like to include YOU, the tumblr community, into my speech next week, and to do so, I want to include your photos in my presentation.
This is your opportunity to get your message across.
The challenge: take a selfie with a piece of paper. On the piece of paper, write or type a short message you would give to health care providers, designers, other patients, loved ones, and future health care providers/medical students.
Some examples might be "look outside of the box" or "listen more" or "I am the face of (whatever disease here)."Even something like “let patients help” or “I deserve to be heard” or “Do not invalidate my pain just because it is not visible,” whatever. Anything you want to communicate, you can.
This is an opportunity for you to say what you want to say and have it broadcast on a big platform—I really want your messages to be echoed through this speech because you have all been an integral part of my journey. I wouldn’t be doing this without the social support I get here.
I’d also like to extend the offer to medblr: med students and current providers: what do you want to say to ePatients? Of course you can send me a selfie without a name attached through a made up email address to preserve anonymity. Neither myself nor anyone watching the speech will know who you are or if you have a blog, etc. I will not be identifying anyone and the photos will be small—made into a collage. Your choice—the offer is there. Cough cranquis cough. Maybe the message is "we do not have all the answers" or "we are doing our best in a broken system," again—this is whatever you wish to communicate to your patients.
I would not have found my own voice if you had not let me foster it here in this community, so please help me echo the voices of all of us next week.
All photos have to be sent to my email, firstname.lastname@example.org, by Monday evening to be included. Please include “Photo project” or something in the subject line!
June 5th Ignite Speech at Stanford School of Medicine MedX Design for Health
I am so excited to announce that I will be flying out to Stanford School of Medicine to speak on June 5th!You can watch live by tuning into MedX Design for Health at 6pm PST (9pm EST), but more importantly, you can join the conversation via a live chat using the #MedX hashtag. We will be taking questions from the class as well as online audience, so please tweet me or the moderator (whose twitter I will link shortly) your questions or comments.
I’m honored to have this opportunity to share my story and I hope everyone here in the Tumblr patient community will watch and join the conversation. We’d love to hear what you have to say—your story and your input matters.
I've had people with no medical problems suggest that I caused or can stop my autoimmune disease with diet while completely unaware of the fact that I can't eat most foods to begin with. And the people that think the pharmaceutical industry wants to keep me sick. Oh and the people that seem to think that "negativity" can make you sick. Do you have any advice on how to deal with the holistic healing people who think they know more about my body than my Doctors and me?
This is really tough. I get this constantly in person and from people online through my Tumblr inbox, email, and blog comments so I know exactly what you’re up against.
Everyone handles this differently so I can tell you what works for me, but I can’t say it’ll work for you.
For me, it really comes down to who is making the comment. New friends that mean well? Usually I take the opportunity to educate them and then drop the subject. If it comes up again, I make it very clear that while I appreciate their efforts, I am doing absolutely everything in my power to treat my disease(s) and have a highly qualified team of doctors behind me. Sometimes I will say something along the lines of "thank you, I will look into that" and it ends the conversation.
Other times, I’ve called people out. When strangers make comments, I usually ignore them. I can’t tell you how many emails I get about apple cider vinegar and energy healing. It helps that I have radically overhauled my diet and lifestyle and yet, I still have active inflammation/flares. It helps that I can throw that back in the faces of those who cross the line and attempt to invade my boundaries. If someone has really crossed the line with me, I will usually pose a question along the lines of "if this were the cure for my disease, do you not think it would be highly regarded by medical professionals and do you think I would still have this disease?"
So my question to you, anon, is how do you respond already? I don’t personally find that responding with anger ever helps an in-person situation like this de-escalate. My biggest piece of advice is either use the opportunity to spread awareness and educate, or use a one-liner and shut the conversation down/enforce your boundaries.
You know your body best, and how you treat your body and your disease is in your hands. Do whatever you need to do to enforce those boundaries and maintain your wellbeing (without hurting others, of course).
Does anyone else have any suggestions? Leave your comments in the Disqus box below.
The end of this semester feels monumental in a way that I am not sure words can quite explain.
Spring semester is always the semester that really wears me down each academic year. By the end of it, my nerves, emotions, and body are completely fried. Motivation nowhere to be found. Maybe it’s the weather. Maybe it’s the stress that comes with January 1st out-of-pocket costs being reset. Maybe it’s the new semester routine or the stress of the holidays. In reality, it’s probably a little of everything.
This year’s spring term was no exception—with pleurisy, pneumonia, and the flu, missing nearly an entire month of class, rushing a social group on campus, 14 credit hours, picking up a minor and a new major, and not having been out of a flare since November.
I spent less time second guessing whether or not I should be pursing PA school. I spent less time questioning whether or not I’m intelligent enough to be taking organic chem. I spent less time accidentally shedding tears in front of professors (though it still happened twice) while in a flare freak-out during a week when I could barely walk.
Instead, I took more steps outside. Literally. I was unable to run from December to March because of poor health. When I felt well enough to try, I stopped training on the treadmill and moved to the trails. I’m feeling balanced enough to manage the terrain changes and incline, and I am so grateful for that. It has become my safe place.
I took more steps out of my comfort zone—an easy place for me to stay in when I’m not doing so well physically. I interviewed for leadership positions. I put myself out there. I have met so many beautiful new people, new friends. Positive people who lift me up and make me laugh.
I’ve been accepted on a scholarship to Medicine X 2014—only this time, I will be giving an ignite speech on my journey through a mystery diagnosis and rare disease. Me and my homegirl Nikki Estanol will also be presenting a panel at MedX, but more on that later.
I pushed myself harder than I’ve ever pushed myself before and managed a 4.0 term GPA, making the President’s List. My GPA (and thus my career goal) is no longer in the toilet; my scholarships no longer in jeopardy. I have a set graduation date (I was supposed to graduate this semester) and established relationships with some amazing professors who were (and I’m sure will continue to be) incredible mentors to me. I’ve finally reconciled what I want to do, what I love to do, and the diseases that make living a daily battle.I can see the intersection of ePatient advocacy and clinical medicine staring me in the face, waiting for me.
No semester has been academically, intellectually, emotionally, or physically challenging the way this one has been. I’m exhausted, but I’m wonderfully satisfied.
It’s hard to take steps forward when your body holds you back. Sometimes I’m not sure I’m taking enough steps forward, or taking them fast enough (and sometimes, I beat myself up for this). But at least I’m moving forward.
For the first time—ever—I am actively living, not just existing. Less wondering, more doing. I’m not sitting on the sidelines, letting chronic pain and these god awful diseases keep me from going down the more difficult or seemingly insurmountable path. Even when it is easier, perhaps more responsible, or more “compliant,” for me to sit back…
I’m moving forward. And those steps, no matter how small, are worth celebrating.
Thank you for letting me share these steps with all of you.
Here’s to a summer of healing, personal growth, and less painful days for all of us,
Blogging has come to a total halt until May 3rd, when my final exams end
My website design disappeared after some hosting issues, please bear with me until I am able to fix the pages/etc (first week of May)
If you’ve emailed me or sent me an inbox question in the past two weeks or between now and May 3rd, pretty please give me some time to respond. Final exams/research mean everything else in my life is on pause.
If you have an urgent question, please contact me on twitter or add “urgent” in the subject line of your email!
“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.”—Kirsten of Notstandingstillsdisease (whose blog you should follow)
So, between coordinating my car situation to a flare that took out my knees for a week to my ceiling coming down and needing to be replaced/leaking/dying, and a FIFTY SIX chapter final exam looming…things are just a little bit busy right now!
I apologize, but this site is going to stay ugly probably until finals end on May 2nd. I don’t have the time to format right now, but I will get to it when I’m not in panic-and-freak-out mode!
Hope you guys are doing well.
I’m on and off Twitter if you want to talk/need anything.
I never ask for help. But this is the one time I will. I have had Rheumatoid Arthritis and Sjogren’s Syndrome for 5 years. I started rock climbing less than a year ago, and I knew I had found my passion.
But without a cure, I can’t continue to do the one thing I have come to enjoy in life. I am a team captain in the 2014 Atlanta Walk to Cure Arthritis. My team name is Rocking Our Way to a Cure. Any donation would be so greatly appreciated, even $1 would get us closer to a cure. I would love for anyone who can to join my team as well. My team page is here and my personal page is here. Both accept donations as well as new team members. Thank you so much to all of you who continue to support me in everything I do.
Signal boost! This is absolutely awesome! Please help Jesse and Team Rocking Our Way to a Cure reach their fundraising goal!
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 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.
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 chronicdisease. 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
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.
Found your tumblr because of your post about staying positive. I've been dealing with UC for a few years. Had to completely change my diet and lifestyle and keeping a positive attitude has allowed me to make the adjustments and feel like I'm improving my life instead of succumbing to a chronic condition. Great advice for anyone dealing with chronic health issues. Looking forward to future posts.
Thank you for the kind words! I’m sorry to hear you’re dealing with UC (I assume you mean Ulcerative Colitis?). I know it’s so tough and keeping a positive attitude is even harder.
It doesn’t help that some people think that keeping a positive attitude means being optimistic and denying reality, invalidating experiences too. That’s excellent that you’re able to feel like you’re improving your life. Good for you.
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.
What can you tell me about the etanarcept injection that treats Arthritis? I'm on it right now and have been having problems with my liver...
Elevated liver enzymes are common with biologics. Typically this resolves itself once you stop the medication and many doctors are not concerned so long as A, you are having labs drawn regularly to check your liver function and B, your metabolic profile is stable otherwise, and C, you have no major liver conditions otherwise. But:
Important question number one: are you seeing a rheumatologist or specialist regularly and having blood work done? If no, this should be addressed ASAP.
Have you had discussions with your doctor regarding side effects, adverse effects, and how your doctor plans to monitor you while you are on this medication?
Please call Enbrel’s patient line! They have nurses and pharmacists on standby to talk you through any questions you have regarding the medication, free of charge. I’ve linked you to the site and number above. They helped me greatly when I was on Enbrel myself—do not hesitate to call!
Enbrel is a biologic medication, specifically it is an Anti-TNF (tumor necrosis factor-alpha) based medicine. This means that Enbrel blocks TNF cytokines—inflammatory ‘messengers’ that cause inflammation and are mistakenly attacking your joints/connective tissue—effectively suppressing your immune system and hopefully making you feel better!
So last night (or this morning, rather) around 1:30am,
I was sitting in bed, medicating and applying lidoderm to my face, trying to muster through a pretty gnarly facial nerve pain attack, when there was an enormous, ground shattering crash.
And then I heard yelling and crying.
Ran outside and a drunk driver going what is estimated to be at least 70mph had crashed into my apartment building’s front yard and totaled five cars.
He then fled the scene and it turned into an on-foot hunt to find him (he has been arrested, thank god).
Had I or any of my neighbors been outside, we would have died. Truly. I was due home at the time the accident happened but I canceled my plans last minute. Thank god for that.
It was complete destruction in the middle of this flare up and pain attack.
Things have been tight financially. Medication is expensive. I have less financial aid because classes are more expensive. And now, I have no car.
I can’t afford a new car. I can’t afford things like this.
I stress about the cost of broccoli at the grocery store. I stress about the cost of supplements. I stress about the physical, mental, and emotional costs of stress.
There’s no real point to this post.
No one was hurt last night and it was literally miraculous that no one died, but this student’s actions are still having devastating financial and emotional (and for me, physical. The stress has spiraled my pain out of control) consequences on all of us.
If anything, it’s a reminder that your actions—all of our actions—have serious consequences. Take nothing and no one for granted, it can end in a split second.
If you see someone driving erratically or know someone who is about to drive drunk, PLEASE call someone. Call a cab, call the cops, do something.
Don’t drink and drive.
Edit: I do have insurance, but I may not get more than 3-4k back even though I had a car worth 6k (and that was a steal. I got very, very lucky to find a 2000 honda with less than 60k miles on it). There aren’t a lot of details yet re: the drunk driver’s insurance. Hopefully I’ll know more in the next little while.
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.
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.
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 :)
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: firstname.lastname@example.org
Without insurance, Kineret alone would be ~$3,000-7,000 for a ~28 day suppl depending on the dosage. With insurance, it comes to about $1500 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.
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.
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.
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.
And then, this: a lovely woman from Florida who has agreed to share my blog/blog post with her congress people (!!!!).
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.
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.
You asked aand you shall receive. There’s a link in my last post to my 8tracks page. You’ll find Study Part I and II, and a third playlist called Forge Ahead, which is the mix I play in my car or during tough mornings when I need to tackle the day and kick ass despite pain.
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.
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.
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.