Life with a Flare

All about a teenager whose life turned into a bad episode of House. I am a 19 year old college student at Temple University. I am diagnosed with Enthesitis, Amplified Musculoskeletal Pain Syndrome (AMPS), Celiac Diseas, Gastroparesis, and Dysautnomia. Come along for the journey! lifewithaflare.blogspot.com

[bekindbegoodbebrave]

Here’s to the twenty-something’s who see more hospitals than bars

who are living on caffeine and prescription pills

whose time is filled with doctors appointments instead of business meetings.

here’s to the the twenty-something’s who are fucking tired

here’s to the twenty-something’s who don’t feel twenty-something at all.

[lisbon]

[aspiringdoctors-blog]

Dear med students

You are not a burden.

We had a trio of M2s drop by the inpatient service yesterday afternoon and the attending asked if we had any patients who would be good for them to meet. One of mine is the sweetest old man (we talk about our cats every morning when I round on him) with some interesting heart pathology. I recommended him.

This morning when I rounded I asked how he was doing and he said “Some medical students came to talk to me yesterday about my heart. They were so sweet! I was so excited they wanted to talk to me, it made my day!”

Sometimes I felt bad talking to patients as a med student, clumsily asking questions, unsure of how to act, not confident in my knowledge base. And some patients don’t like students. But in my experience, those are the exception.

[lifewithaflare]

As a patient I actually love getting assigned med students and nursing students! They tend to be really interested in my case and fun to talk to. The one exception was when I had a med student instead of a resident and he messed up all my meds (and woke me up every half hour about it after I had been in the ER all night and was feverish) and also when I called my therapist to have a session while I was inpatient he came in and sat in my room like we were suddenly going to be besties. Sorry I got off topic but generally I love med students because they want to learn from you

[chroniccurve]

Performance Act: A discussion on the not-so-intimate patient-provider interaction. Can we do better?

Chroniclife means having two careers: one in which I talk to patients all day, the other in which I help other people learn to talk to their providers. And here I am, with a provider that, for the life of me, I cannot seem to get on the same page with. 

At what point do you part ways? The patient-provider relationship is terribly intimate…yet, maybe not that intimate at all. Intimate in that yes, your hands are under my armpits to feel my lymph nodes. Intimate, yes, in that I will to admit to you that my mouth ulcers and my right hip inflammation both impact my sex life. But…not nearly as intimate as the relationship I have with my disease. 

I see my doctor every 3 months; I say ~whaddup~ to my arthritis up every 3 hours or so. The mornings I struggle to walk Bruce, the times my boyfriend climbs the stairs to do my laundry for me, the times my coworkers and I joke about decorating my crutches or find me meditating/deep breathing in the stock closet…my doctor doesn’t see those moments. That intimacy is not shared. Maybe, if it were, we’d click. Is this why we don’t connect? 

Is it because I have a pretty positive, upbeat, downright bubbly affect—that my pain is second-guessed? Not taken seriously when I, with a smile, explain how seriously it impacts my level of functioning? Like a long-term relationship wearing thin, do we rekindle things? Try to find a different way to communicate with each other, to hear and listen to each other? Or do I pull a “it’s not you, it’s me. Thanks for all of your help” and start the obnoxious process of trying to see a different specialist…perhaps one more familiar with autoinflammatory (not autoimmune) diagnoses. 

Back in the summer, I decided to see if I could see more progress than what I was seeing on Kineret. Kineret worked, but I felt like I was settling. I’m 24, I still needed pain meds…why not try to keep pushing forward? So we switched to Actemra and I saw some small changes: less stiffness in my hands, fewer fevers. But by October, the stiffness in my hands, the log-rolling myself out of bed via my sheets, the moments of meditation in the clinic’s autoclave room increased tenfold. I found myself with inflammation in my right hip. Last month, that inflammation popped up in my left hip, too. The bad days outnumber the good days. Simply put, I was happier and healthier on Kineret. Maybe I was overzealous. Maybe I was selfish or foolish to think we shouldn’t settle. Maybe it was naïve. I don’t know. Hopefully my motivation was understandable. I do understand why it could be frustrating for my provider. So today, I told my rheumatologist that after ~8 months on Actemra, I wanted to switch back to Kineret and asked what his thoughts on this were. Today, I was okay with settling.

Let me just pause. I am 24 years old, a budding career, a wonderful/active life—and I am actively settling for the best I can supposedly get. It was not received well. He suggested another anti-TNF medication….even though my genetic tests results and previous medication history all suggest IL-6 and IL-1 inhibitors are the best options for me. 

He did a clinical exam. Mind you, yesterday I had my hip joints injected. SO when he pressed on the area just below the injection—and I flinched because, ya know, long needle through soft tissue into joint capsule = I am tender—it became a conversation about how my muscle pain likely indicates “a psychiatric component.” Then came the suggestions that I was perhaps depressed. That could not be further from the truth. Suddenly I found myself defending my entire life: I just had my hips injected, I don’t typically have muscle pain, I just graduated with high grades, I work a job I love in a field I’ve always dreamed of being in, I have wonderful friends, I have an amazing boyfriend—we’re moving in together soon and the relationship is healthy, I have the derpiest, silliest, sweetest dog that keeps me moving, I paint a lot, I drink whiskey at our favorite bars and enjoy the outdoors. I’m really, really happy. This is probably the happiest I’ve ever been…depression is nowhere near my radar. My days are spent in the light, pain or not, and for that I am immensely grateful.

 So then he mentioned I must have not been sleeping. Do I admit to trouble sleeping through the night because of pain, at the risk of being told it’s depression? Do I tell him about my meditation and visualization techniques I use to help me sleep, and how well they work? I chose to explain the stress-relieving skills I use. It fell on deaf ears, or rather, it certainly felt that way. 

I insisted on the Kineret or an IL-1 inhibitor that we know has worked in the past, while he insisted on depression. We were not having the same conversation. 

Which was, quite frankly, baffling. I couldn’t figure out how to hear him, or for him to hear me. I tried to be open with him. I told him that I was open to trying something along the lines of Cymbalta if he thought it would help. I told him I absolutely agree that there is a mind and body connection. I didn’t shut him down. Maybe I could’ve done things differently. I don’t really know. But he didn’t hear me, either. 

It didn’t matter that I use visualization or meditation or therapy or exercise to combat life’s stresses. It didn’t matter that my hair and makeup were done and I had a smile on my face. It didn’t matter that my quality of life goals aren’t being met or that my CRP is still high. We didn’t connect. I used every communication technique I use in the clinic and every technique I learn of and teach to other patients like myself. Nothing worked. 

He told the head nurse, S, to start the prior authorization process for Kineret (mind you, the door was open) and the head nurse had the audacity to throw a fit. Yes, I know it is a huge paperwork process—I do PA’s in our clinic for biologics every week, and yes, they and the specialty pharmacies are a pain in the ass. But that gives you NO right to talk so loudly about a patient or a patient’s treatment plan in such a manner. Professionalism is important. If I spoke about a patient like that in our clinic, ESPECIALLY with them around, I would be fired. 

So I don’t know where we stand. Like a relationship fizzling out….maybe it’s both of us, maybe he just…doesn’t get it. I don’t know. Sometimes I feel like the clinical exam is that of a performance act for many patients—be positive enough to assure them you’re emotionally stable, but not so positive that you’re not taken seriously. It’s okay to be tired of putting on a show. 

I’m certainly not going to do it anymore. I was ashamed of myself for lying, for pretending, for minimizing today.

But rather than leaving it on that note. I’m going to let it fuel something more powerful. What could I have done better? How could I have been a better patient? How can I be a better provider when taking a history from my own patients? What actions make me feel listened to, and which of those actions can I replicate in our clinic?

We can do better than this. I know we can. But, we have to end the performance act and empathize, as patients. We, as providers, HAVE to find a way to connect with our patients’ experiences with chronic pain–even if they are foreign to us. Even if we are tired. Even if it takes that extra 5 minutes to phrase a question five different ways so as to get our patient to understand what we need from them. 

We can do better.

[lifewithaflare]

This echoes some of my own experiences this week. I generally really like my rheumatologist but there was definitely some clash at my last appointment. At one point I felt like I was too upbeat that my pain wasn't taken seriously but on the other hard he mentioned how it wasn't inflammatory. He didn't come out and say depression or it was in my head but I felt like that's what wasn't being said. Mind you I couldn't move half of my back. Yes like Emily I did have some muscle pain in my shoulders that was used to point out that my pain wasn't in my joints even though I was complaining about my shoulders as I knew they were tense due to compensating for my back.

Luckily I have learned to speak up. A few years ago had my doctor asked what I wanted them to do I probably would have said what they thought was best but I have since learned to stand up for what I need. When we were finishing up I was asked if he could do anything for me and I said yes, my back needs serious help (I had only said this 2 or 3 times). Thankfully although doubtful he did listen and came up with a plan as well as two back up plans.

In this adventure we realize we could double my Celebrex dose (since it was still a peds dose and I am now 21). He also listen to what worked in the past and said if the Celebrex increase didn't work we can do a steroid burst and then PT is the last option.

Yes it was a helpful appointment in the end but I always feel like I am walking the line between not appearing too functional because then my pain and symptoms won't be taken seriously and looking too sick and being told I am depressed. I also have fears about telling my doctors pain is interfering with me sleep. Don't we have enough to worry about as chronically ill patients without tip toeing around our providers?

[lifewithaflare]

Hi! I was at chop last year and was just wondering what art therapist you have? Hope you are doing ok :)

Abby is my favorite and I have her the most on the GI floor but sometimes I see Hope when I am admitted to adolescents

[laughingwithmycolon]

Talents include:

* joint pain * wrong food choices * unintended weight loss * but never giving up!

[lifewithaflare]

So true it hurts a little

[jessthecrohnie-blog]

The People Have Spoken

A few days ago I asked y’all what the worst-tasting medication in the world is. Well, the people have spoken.

Runners up were various antibiotics: Clindamycin, Vancomycin, Bactrim.

The honorable mention award goes to Flagyl, another antibiotic. I’m sensing a theme here.

But the #1, grossest, nastiest, “pure evil in a pill” award goes to…

Prednisone, otherwise known as Prednisolone for my non-American friends. Betcha you aren’t surprised. I know I’m not.

[medicine-and-compassion-blog]

Tinidazole is the worst I’ve taken. It is used for empiric treatment of protozoan infections in many countries. It leaves a horrible taste in the mouth for days.

Alternative in countries where it is available (not in U.S.): secnidazole. It does the same thing as tinidazole but without the horrible aftertaste!

Why is Bactrim on the list? I don’t remember it having a bad taste?

[drdessertfox]

Prednisone is the worst tasting medication I’ve ever taken as well. I had to take it for a severe case of bronchitis as a child. I didn’t actually know what the medication was at the time since I was only 9. 

A year ago I had a horrible outbreak of eczema and had to take prednisone and as soon as it hit my tongue I recognized it from when I took it as a child. It literally tastes so bad it evoked memories from 15 years prior. Prednisone is a taste you don’t forget. 

[cranquis]

Meanwhile, my two boys LOVE the taste of liquid prednisolone. As in, “oh, oh, Dad! I coughed once last night, do you think it’s croup? I want that medicine!”

Weird kids.

[lifewithaflare]

Do I win anything for being on both Bactrim and Prednisone currently? I actually did not notice Bactrim's taste but maybe that's cause I am throwing it back with prednisone?

[wayfaringmd]

Have you ever had to draw blood yourself for labs? A knee replacement patient I was working with asked the Ortho attending to do her blood draw instead of me, and the poor thing looked terrified at the idea. Or is that a situation that just never happens?

That’s a weird situation. That sounds like a patient being a snob. They almost certainly would have been in better hands with a nurse or phlebotomist sticking them.

I did some in medical school just for the practice at venipuncture, but as a physician I rarely if ever draw labs myself. I can do it if need be, but I’m not a pro at it by any means. My mom, who is a nurse, is waaay better at it. I’ve done ABGs in the ER a few times when everything was going crazy and nobody else was available, but that’s not a common thing for me. 

Back in the day (”the good old days,” as your 75 year old attendings would call it), residents had to draw morning labs on all their patients. Residents did so many blood draws that they were the ones called for “difficult stick” patients. Not so anymore. Most hospitals have IV teams and phlebotomists that do all the sticking for you. My office has a phlebotomist and 3 nurses who can all draw labs. So if we have a patient who is a difficult stick, all of them can potentially try before coming to me. And I’ve told them before: if they can’t get the vein, I certainly won’t be able to. 

[lifewithaflare]

I actually had a resident take my blood a couple nights ago. I was shocked it wasn't a nurse or phlebotomist, it actually made me really nervous since they don't have as much practice. Had I not been have a sleep and super sick I probably would have said something at the time. I can't imagine why anyone would ask for a doctor to do a blood draw.

[lifewithaflare]

Medical Update

Instagram is not cooperating with tumblr and I have been to lazy to fix it but there are a few things I would add here that I won't on IG since almost no one I know IRL follows me here. This week has been a shit show. Quite literally and a bloody one at that, landing me in the ER Monday where they did almost nothing. Tuesday I met an adult rheumatologist. He changed my diagnosis to Undifferentiated Connective Tissue Disease. He is also sending me for a lip biopsy and a skin lesions biopsy. The first has been scheduled but the second one I have to wait until a lesion pops up to deal with. Overall I liked the new doctor but and not looking forward to the sharp things going into my body. Wednesday I saw my PCP who couldn't believe how little the ER did and gave me an exam to rule out some of the more benign causes of stool with blood in it. Today I am just thankful to have a day away from doctors.

[lifewithaflare]

Finally got my tube changed, a 2.5+ hour wait for a 15 minute procedure #chopatrium #phillyphanatic #professionalpatient #tubieproblems #professionalpatient #gjtube (at Children's Hospital of Philadelphia)

[lifewithaflare]

The waiting room I spend way too much time in. Thanks you IR, I can always count on you to change my appointment multiple times and still run behind #interventionalradiology #alwaysrunninglate #tubieproblems #gjtube #professionalpatient (at Children's Hospital of Philadelphia)

[lifewithaflare]

Shout out the IV fluids, it our second Valentine's Day together. I really like the fact we get to spend this one cozy at home instead of at CHOP like last year #therealBAE #IVfluidsdependent #ilovesaline #dysautonomia

[lifewithaflare]

Irving the IV pile has been with me since I first got a feeding. He has stayed by my side through 5 NJs, 4 peg-js, and 5 MicKey GJ buttons as well as one port. He dutifully holds all my feeds, fluids, and pumps as well as various decorations (because who said an IV pole could be fashionable?). A lays making sure I get my nutrition and fluids while I sleep, Irving is the unsung hero of feeding tube awareness week. Too many people think having an IV pole in their room is a bad thing, I am just thankful to have Irving instead of being in the hospital with an IV pole that doesn't have any Christmas lights #irvingtheivpole #IVfluidsdependent #tubie #feedingtubeawarenessweek #gastroparesis #beadsofcourage #dysautonomia

[lifewithaflare]

Here is one day worth of feeding tube and IV fluids supplies. People constantly make comments about how it must save me so much time not having to eat. They fail to realize how much time I spend prepping, priming, and trouble shooting my tubes. My apartment is filled to the brim with medical supplies. I am thankful to live a fairly normal life thanks to all of these supplies. #feedingtubeawarenessweek #gastroparesis #tubie #IVfluidsdependent

[lifewithaflare]

Feeding tube awareness week #tbt throwin' it back to the NJ tube days. I do not miss this nose hose nor being in the ER constantly but I am also thankful for the energy it gave me. I am thankful that it allowed me to make it through another semester of school. #chronicillness #spoonie #dysautonomia #tubie #njtube #gastroparesis #feedingtubeawarenessweek

[lifewithaflare]

10 liters of IV saline, what a gorgeous sight! After being out since Thursday because no doctor was taking responsibility, finally my cardiologist's PA got involved and saved the day and also realize I need fluids more then I was getting them #IVfluidsdependent #tubie #feedingtubeawareness #dysautonomia #spoonie #chronicillness

[lifewithaflare]

Because what would feeding tube awareness week be without a trip to CHOP? The place where it all began. I was wearing my super tubie shirt but had to change to a shirt that I could access my port in better #dysautonomia #feedingtubeawareness #tubie #supertubie (at Children's Hospital of Philadelphia)