Q:If you could go back and do things differently when you started university or tell your freshman-self some advice, what would you do/say? I start college in a few weeks with chronic pain and I'm very nervous about new challenges and how to manage my disease away at school.
Ooh. Loaded question. I’d do a lot of things differently, very few of them having anything to do with my health.
Things I’d tell my 18 year old freshman self:
- Get involved with your Student Disability Resource Center ASAP. Do not wait until your symptoms get out of control, don’t feel ashamed or like you’re abusing the system. I’d have reached out to them for help much sooner than I did. Use the accommodations you’re offered. If you find you don’t need to use them, great! But keep them as a safety net. Trust me on this.
- Put a lot of effort into getting to know your professors. Again, if I had asked for help instead of feeling embarrassed and shutting down, I probably wouldn’t have failed stats 3 times (perspective: I aced the class the 4th time I took it and asked for accommodations and now I really like stats!). Now, I make a point to get to know my professors, share with them a tiny bit of what I’m up against physically, and it has made a world of difference. I don’t hesitate to miss class when I need to, I know I can stop in and not feel like I’m offending my professor if I need to be caught up on some work, etc. They have appreciated me keeping them up to speed with where I’m at, understanding my limitations, and are able to tell me what they need from me in order to make things work. Also important: write thank you notes at the end of each semester!
- Get involved, but pace yourself and be particular about where you invest your time. I wish I had done this earlier. Join greek life, join an organization, club, academic fraternity, whatever, but find one you really love and give it your time. Physically, I don’t have it in me to give 4 or so organizations my time and energy. I choose two and I wish I had thought to do this when I was a freshman instead of jumping from group to group and half-assing the effort I gave to them. It can be tough to make friends when you’re chronically ill for a multitude of reasons, but if you can harness some of your energy into a smaller number of extracurricular groups, you might have an easier time! Don’t spread yourself too thin, find something you’re passionate about, and get to know the people who share that passion!
- Schedule your rest. That might sound odd, but now that I’m in upper level classes, my days are incredibly long and busy. If I don’t schedule rest into my routine, I won’t rest. This usually results in a 2am crash and burn in a Strozier library study room and it’s not pretty. If your major, classes, and schedule are demanding, make sure you get into the habit of scheduling an hour or two of mandated rest. It might sound a little weird, but it’s important to make your health as high a priority as your new social/academic life.
- Not everyone is going to understand your limitations—and that’s okay. If I could go back, I would stop apologizing for my physical limitations in social situations. Yeah, you might have to plan your outtings better (is there seating at that bar? Do we have to walk far to the club? etc etc) and others might find it annoying. That’s okay. Chances are, anyone not willing to understand, accept, or welcome how you handle your medical situation isn’t someone you want around. There will be a ton of people coming in and out of your life over the next little while—it’s okay if some of those people don’t stick around very long. Make no apologies for your disability or disease.
- Remember that going to college is a huge change and the transition takes time. Some people adapt right away, others take a year to feel comfortable. It took me two and a half years, believe it or not. And if I had given myself the time to adjust instead of beating myself up for my limited abilities and the challenges they posed, I probably would have been a happier 18-20 year old. College isn’t really like the movies. It’s okay if you hate it at first—it can be an overwhelming experience. It’s okay (and dare I say, normal) if your body freaks out in response to a new living situation and routine. Give your mind and body some time to adjust, and ask for help if you are struggling.
Good luck, Anon. I know it’s a scary change, but you’ll be okay! You can do this! Please submit some more specific questions if you have them, and check out these other posts:
Don’t forget to care for your caregivers. I was reminded of this today, of just how much work it takes to be in a caregiver role, and how lucky I am to have the loved ones I do. It’s a reminder that I think we, those of us that are chronically ill, need to hear from an outside source every once in a while.
Don’t forget to thank the friends, boyfriends, girlfriends, husbands, wives, and other family members that give their time, emotional and physical energy, love and support.
It’s unbearably difficult, exhausting, and painful to sit back and watch as someone you love suffers in any capacity.
So here’s to the caregivers. Don’t forget to tell those around you that you love them, that you appreciate them. Give them a break the way you give your own body a break when it needs rest.
And while you’re at it, watch this fantastic ignite speech on Patient-Caregiver Relationships by Afternoon Napper. It will give you chills and a massive dose of perspective.
One of the welcome shifts under way in medicine is the move towards “shared decision making,” where hubris and hierarchy give way to humility and equality.
Q: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.
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.
Q: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!
American Society of Health-System Pharmacists
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.
Q: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.