A journalist on steroids: treatment updates and getting back to ‘normal’
Posted on March 28, 2015
It seems as though I am going to keep with the trend of music with posts. The above video is for Liz Phair’s “Poleyster bride” from the album Whitechocolatespaceegg. Besides the obvious commentary about feminism, marriage and childbearing in the song, over the past week I’ve found myself listening to it a lot in the context of my diagnosis. (Oh hi, did you miss that? Read all the deets about me having Crohn’s disease here.)
I also will be doing my best to write with some frequency about what is going on with my diagnosis, treatment and life lessons from this. I was quite overwhelmed by the positive response from my last post and honestly quite surprised that many other people my age were grateful for my writing and also had questions about things like the American health care system, navigating health insurance and figuring out how the hell I am going to start my life as an adult and save money for my future and crap like that while also having to remember to make sure I pay the bills.
Could you give two flying whatevers about my actual treatment and just want to read about how crazy I am on steroids? Click here to skip a whole bunch of words and get to the goods.
Back to Liz though. The chorus is really the part to pay attention to:
And Henry said, “You’re lucky to even know me. You’re lucky to be alive. You’re lucky to be drinking here for free cause I’m a sucker for your lucky, pretty eyes.”
Since my last writing I’ve had time to do an awful lot of thinking — not that I’m not thinking when I am not trying to recover — but I’ve been hopped up on steroids (more on that later) and hanging around waiting for my body to decide that it is ready to be back in the saddle again, to use a Texas-appropriate metaphor.
Sure, Crohn’s is a less than awesome diagnosis, but as I posted before 700,000 Americans live with Crohn’s disease. It is very manageable. The alternative diagnosis that I was looking at was leukemia….so I’m going to take Crohn’s if I have to have a serious disease. In that vein (see what I did there, medical humor!), I do feel incredibly lucky to receive my diagnosis at this time in my life and to be reassured that I am going to be living a very happy full life for a number of reasons:
- I am still on my mom’s insurance plan (Thanks, Obama!). So I have time to figure out the very complicated American health insurance system and SAVE MONEY for when I am on my own insurance plan. Premiums! Deductibles! HSA Accounts! Did not plan on needing a crash course on all of that already, but for the sake of the other youths these are things I will be writing about here more at a later date.
- I have a full-time job with co-workers who are incredibly supportive and are making sure that I am completely prepared to come back to work so I don’t wind up in the hospital again. Not to mention because the GuideLive.com team works completely in the digital space, I am able to stay connected with them even from my bed trying to calm my angry colon with a heating pad. I can assure you, many a funny GIF is shared daily.
- I live in the age of the Internet! I am so grateful for all of the friends, friends of friends and complete strangers who have reached out to me with stories about living with Crohn’s. I cannot say how much they have helped me better grasp how this will change my life, but also how everything is manageable. My fellow Crohn-ies really are the best! Thank you, each and every one of you.
Updates on my treatment
Monday I met with my gastroenterologist to discuss my long-term treatment options. As I wrote in my last post, Crohn’s disease does not have a cure. Most of what doctors do is work to get patients into “remission,” meaning that they are not suffering from flares of mouth sores, diarrhea and abdominal pain, just to name a few.
I realize in my last post I neglected to include some of the science behind Crohn’s and what is actually happening. This information is important to help understand how my long-term medication will work.
So between reading on Medscape and then translating what I read into plain English via Wikipedia this is my understanding of the science taking place inside my gut. Crohn’s disease is generally considered an auto-immune disease meaning that my body’s antibodies that would usually fight off infections have changed course and decided that my intestines are the enemy.
When my immune system’s response is triggered, inflammation begins. In my particular case, I caught the flu from someone out there in the world and so my immune response began…then it never stopped.
So part of this response is for your body to produce a protein called tumor necrosis factor or TNF. Current research suggests that in Crohn’s patients, the body produces too much TNF and this is what causes the inflammation.
To rapidly cut down on the inflammation, doctors prescribe high doses of steroids, then taper the patient off the steroids as their condition improves — the taper is necessary so that other important organ groups, like your adrenal glands, are not harmed.
Next up comes the immune-suppression drug treatment, which is the more long-term maintenance part of having Crohn’s. Generally, doctors are prescribing one of two drugs for this: Humira (you may have seen the commericals) or Remicade. The drugs bind to the TNF that the body creates and shot blocks them from their goal of attacking my colon.
The result? The inflammation is decreased and the body goes back to doing what this part of the body is supposed to do — get things ready for pooping.
My treatment plan:
As mentioned before, I was prescribed steroids in the hospital to continue upon my discharge. I’m not talking like wimpy little steroids either. I’m talking like, I am going to cheat in sports level steroids.
The doctor told me I would probably be pretty wired and maybe a little jittery. First few days, mehh I was awake for sure, but pretty stable still. After a week I was going absolutely INSANE. I was so jittery that me hand writing a grocery list for my Dad became an absolute joke.
Monday, when I went to see my doctors it was day 12 of the 40mg of Prednisone. I was talking 100 miles a minute. My brain just would not shut off at sleep, despite other medications to help me sleep. The night before the doctor I had been up until 4:30 a.m. reading about the most random things, sending a 3-page long email to my best friend living in Boston about all of my feelings (she said it was the most eloquent insomniac writing she had ever read) and counting sheep — I have a fundamental issue with counting sheep I have found, I start thinking about where the sheep are headed next and then I stop counting and I start obsessing over possible sheep destinations — as you can tell, sleeping is not my strong suit. I believe my parents can also attest to this — they used to have to drive me around as an infant to get me to sleep. Now I can sleep in any moving vehicle, but that is neither here nor there.
So, imagine that paragraph but speed read it and that is probably an accurate representation of how I was behaving in the doctor’s office. He decided to knock my Prednisone dose in half and over the next several weeks we will continue to taper as long as I continue to respond positively.
Next up on the agenda was discussing what Crohn’s means for my long-term health and wellness. So we turned to talking about the pros and cons of Humira and Remicade, the two treatments mentioned above. At the time I was still ‘roiding hard, and I arrived at this appointment armed with my reporter notebook filled with notes and questions about the two medications.
The short of it is that Humira is a self-injection medication taken every two weeks after an initial period of four shots, then two shots. Remicade is administered through an IV at a medical facility every eight weeks and the infusion takes between two and four hours.
According to my doctor, the two drugs, at least in my case, are supposed to be about equally effective for managing symptoms because I am responding well to my crazy steroid treatment. So it really came down to more of a lifestyle choice. Things to keep in mind:
- Without these treatments I will in all likelihood end up back in the hospital to be at the minimum treated for dehydration because my crazy flare up symptoms will return.
- The longer I go without treatment, the chance of serious damage being done to my colon increases. What does that mean? Well, probably that I would need surgery to have the damaged section removed — something I would like to avoid. My colon may not be awesome, but I like the idea of having the entire thing, which by the way is about 1.5 meters or 5 feet long.
In my current position, I could feasibly spend a Friday afternoon at a hospital getting Remicade then get home and just chill out for the rest of the evening and likely the following day and it not ruin my working or social life. But, what if I were to move from Dallas? When we are all honest with ourselves, I am not going to live in Dallas forever. Or, what if I were to go on a long vacation? So if I moved, or travelled I would have to plan very much around my treatments.
When considering the Humira: I am also not afraid of needles and think I can cope with the idea of giving myself an injection in the thigh every couple of weeks. The injections are like epi-pens, big plastic things. You never see the needle. There is a window to see the drug itself to check that the liquid is clear, not cloudy and has no foreign particles in it — ain’t nobody want cloudy medication injected in their body, especially not this girl. A major pro to this treatment, I wouldn’t have to spend time at the hospital and could travel without issue taking the medication with me.
My doctor and I decided Humira is the right course of action. I will begin taking the medication later in the spring. Right now I am working on getting signed up with both the drug company that manufactures Humira and my health insurance.
This stuff is not cheap. The research into auto-immune diseases is not cheap and so the medications that have come out of that research also carry a pretty price tag — like somewhere in the ballpark of $3,000 a shot. At two shots a month, for a year….yeah I’m about to cost a pretty penny. And this is after my parents put me through private school, sports (and injuries), other health things, all four years of my college and studying abroad — not to mention giving my brother and I a generally awesome upbringing where we never felt like we did not have all of our basic needs covered — Thanks, parents, you guys are rock stars.
LUCKILY, the drug company that makes Humira and insurance companies are aware just how critical this medication is to the patients who take it and have programs to make sure that it is affordable — I plan to do more research into how this is possible, but I imagine there may be federal grants involved for which I am grateful.
These programs also make sure that if for example when I transfer from my mom’s insurance plan to my employer’s in a couple of years if there is a gap (there almost certainly will be) I will not go without my medication because I am uninsured. I will continue to receive my medicine like normal and it all works itself out somehow — again, as a journalist I want to know who is picking up the bill, if only to send them a thank you card because I am a good daughter of the Midwest.
Downsides to the medication
My glasses are not all rose-colored. There are some very serious things that come with this level of treatment. First of all, I am no longer allowed to have nonsteroidal anti-inflammatory drugs (NSAIDs) — no Ibuprofen, no Advil, nothing of the sort — it is all Tylenol from here on out when it comes to OTC medications.
I also cannot have live-vaccines anymore because my immune system is compromised. Essentially, I am broken. In all of the anti-vaxxing coverage you have probably herd about the concept of “herd immunity,” which public health experts are practically screaming from the mountain tops that we must, must be more vigilant about because of people like me. So for those who aren’t up on their public health game, herd immunity means that people like me rely on the “herd” that is all of you out there to be vaccinated to protect me and my weak-ass immune system from getting something that could kill me.
Let’s be honest, between my childhood pneumonia and general poor physiology I would have been culled from the herd a long time ago if not for modern medicine, so keep giving me a fighting chance!
Again, good for my parents and my pediatrician for being very much into making sure I was vaccinated as a child and I have had boosters so I seem to be OK on most fronts except Shingles — I got the chicken pox literally four months before the vaccine was available, so cross your fingers I don’t develop Shingles on top of all this.
Again with having a just truly lackluster immune system comes being more susceptible to infection. If I get a fever, chills, aches, anything that could signal an infection, it is straight to my doctor for a good look over and antibiotics. Friends, family, please keep your germs to yourself.
I am now the girl with Lysol at home and work and always carrying hand sanitizer. Cool, right?
Back to living my life
Post-doctor appointments on Monday I started to get back into the swing of things. I went to a local bar/bookstore/coffeeshop/record store called The Wild Detectives to see Shakespeare at the Bar present “A Barely Rehearsed ‘Much Ado About Nothing.'” I am writing a feature on the group for GuideLive.com that will be published soon. (I am going to keep saying it, if you haven’t checked out the site, just go do it now, also follow us on Facebook, Twitter, Instagram and Snapchat.)
In attending the performance though, I was at the absolute height of steroid-induced craziness. Thank (insert your choice of deity here) for technology because at some point in my notes “DAT ASS” is scrawled, which I believe is an ad-lib quote from the performance, or so I hope. Either way, even though I was absolutely exhausted afterwards, it was good to be out and reporting. I was also running the GuideLive Instagram and Snapchat accounts, which was fun, but also made my steroid-fueled crazy even more frantic.
Like I said, story TK.
I’ve never really thought of myself as an anxious person, and I don’t know if it is the steroids that I am on, or just the general idea of having a disease FOREVER that has changed me, but I have felt such intense pangs of anxiety over the past several weeks.
At least for now, I am going to chalk it up to a combination of the two. Being 23 and being told that, as one of my Crohn-ies said, that you are giving birth to a baby chronic disease, it is a little much to handle.
Initial reactions: “Okay, cool. I don’t have leukemia or some other form of cancer. I can do this. This is manageable.”
Few days later: “Holy shit. This is real. This is forever. Where the hell am I going to be in 2 years, no wait, 10, wait I am going to live for potentially 50 or more years according to current life-expectancy rates! I have to do this for all that time!? That is a long-ass time.” *panicked breathing and rapid texting to friends*
I would say this is all something I am still wrapping my mind around.
It is probably one of the dumbest thoughts I have ever had, but I was reading someone’s obituary in The New York Times recently (I am a terrible person for not remembering who died.), but I got to the third graph where, according to NYT obituary writing style, if a cause of death is provided by the person confirming the death, there it sits waiting to be read by some eyeballs.
The cause of this particular person’s passing was something like complications from pancreatic cancer.
I sort of stopped reading there. This summer when I was an intern at The New York Times I read countless obituaries. I still do. They are well written and if you want to really learn about some humans who lived meaningful lives, in a positive or negative way, obituaries are a good way, albeit morbid, way to do it.
For some reason, in that moment reading a cause of death that was a disease suddenly became much more real. Now, this is not me saying that I think I am going to drop dead from my Crohn’s — I do not think that at all. In fact, according to a fact sheet from the Crohn’s and Colitis Foundation of America, death from complications from Crohn’s is uncommon especially when treatment begins early, but patients still have an overall increased mortality rate due to increased risk of cancers.
Logical right? I am sick, therefore I could die sooner. I suppose all I am saying with this little written soliloquy is that my ways of thinking about a lot of things that I had some how just accepted are changing. Kinda cool actually. Shows that I am growing and maturing as a human being.
Monday I am returning to the office full time! I am thrilled! I think my co-workers are pretty jazzed too. This has left me wondering what my new normal is going to look like — probably not like the cancelled TV show unfortunately.
This week I’ve figured out that my new normal is a lot more structured than I used to operate. The structure comes from my medication schedule as well as needing to eat with the medicine (I prefer for my medicine to stay in my body, but that’s just my personal preference. No judgement if you have a different way you like your medications.) It is also a much more clean and organized one. I’ve taken the past several days to get my apartment back in order and really scrub all of the germs that I can from the place. It has been therapeutic in a lot of ways. I feel like I am back in control of my existence.
In fact, in a couple of weeks I will be in Washington D.C. for the Society for News Design conference. I am very excited to be with other designers discussing the future of news design. I know that I am going to learn so much from such smart, talented people. Going to be at SND and want to connect? Twitter and email! Friends of mine in DC, let’s see if we can see each other. I love the District and I love you. Let’s make the most of it!
I suppose I would say my new normal is still developing. My kitten Brünnhilde and I are still doing an awful lot of reading. Our daily reading list in no particular order:
- The New York Times (online, except for Sundays when we read the entire print issue)
- The New Yorker (the entire weekly print issue, online as well)
- New York Magazine (online)
- Texas Monthly
- The Dallas Morning News
- The Washington Post
- Buzzfeed (love that LIFE tab)
- The awl
- Various media blogs
I am also doing a fair amount of creative writing. If you are curious about that material, email me to inquire about reading it. Most, I am saving from the bowels of the Internet as a back up plan worth of material, you know, just in case I need to get some sort of short essay book published to put food on the table in the future.
Again, thank you for reading. This time around I wanted to share the Spotify playlist that has been feeding my cleaning and writing binge. It is titled “David’s Songs.”
The link was shared on Twitter shortly after David Carr, one of my favorite, most respected and now most missed journalists, passed away in February. His death actually came the day before my first hospitalization, now that I think about it.
There are a lot of things I could say about him as a journalist, but also as a person. I do not think my words can do his quality justice by any means. He truly was a giant. I remember being giddy for days when I was in Minneapolis (his hometown) and tweeted at him on a whim for a dinner recommendation. He replied with several! I stopped breathing.
In a lot of ways, little interactions like that between journalists and their public, or with aspiring young journalists are the ones that I think we (journalists/media) should take most seriously. We are humans. David Carr showed his humanity in his reporting. He reported out his own life of drug addiction and recovery for all to read in “The Night of the Gun.”
If that doesn’t show dedication to the craft, then I don’t know what does.
To whoever made this playlist, thank you. I like to think that you are someone who was closer to David than I. I like to think that David Carr listened to Liz Phair, Bright Eyes, Springsteen, R.E.M., The Jayhawks, Beck and so many more listed on this playlist.
I like to think that you will listen to them too.