Prednisone, Roid Rage, and Moon Face

I had started drafting this post about a month back, and Dynamo (Steven Frayne) coming forward to speak of his Crohn’s disease seemed like a great reason to finish and post it.  Here’s the link to a wonderful The Mighty article that includes Dynamo’s video and more information on the “MoonfaceForDynamo” movement (link).

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I was prednisone dependent for most of college – being thrown into a flare anytime I dipped below 15mg a day.  Once I began biologics, starting with Humira, I only needed prednisone during a flare.  I don’t know if it was because the length of time I was on steroids or due to other factors, but 3 years ago, prednisone stopped working for me.  I was no longer seeing any benefits or improvement from it – only the negative side effects.  Thankfully, my doctors have trusted me and my body, and I have not been prescribed it during a flare since then.

My moon face while on prednisone was one of my biggest insecurities.  Hearing strangers mention it was one thing, but comments (even the most well-meaning) coming from family and friends were definitely rough.  A few weeks before my final year of college began, I was in Resident Assistant/Housing training for the fourth time.  I wasn’t able to go to the camp outing that year due to a ulcerative colitis flare.  Though my GI at the time couldn’t get me in, one of the campus clinic doctors was very concerned and ended up giving me her cell phone number in case my condition worsened.  Though she couldn’t do much, she wanted to do what she could to help keep me out of the hospital.  When training resumed after camp, one of my fellow staff members exclaimed, “Oh! You weren’t at camp because you were getting your wisdom teeth out!”  This is my clearest roid rage memory.  In my head, I was screaming, “no, I didn’t get my wisdom teeth out, stupid!  It’s because I’m on fucking prednisone!”  Since she was a team member I liked, and I knew it would be inappropriate to scream at people during training, I responded by explaining that I had not and it was a side effect of one of my medicines.  Though I felt like the Hulk on prednisone (and the steroid-induced insomnia didn’t help), I had become quite skilled at hiding my rage and keeping up my Bruce Banner front.

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My first hospitalization during the four-month-long c. diff ordeal, there was a mix up with my steroids that ended with a lot more than moon face.  I was with my parents in northern Michigan at the time, so they called and consulted with my GI downstate – prior to the c. diff diagnosis. They had me on patient-controlled analgesia (morphine) that also gave me a small dose automatically at a regulated/scheduled rate.  Though it helped with horrible pain of the combination of c. diff and ulcerative colitis, it made me less cognizant of the care I was receiving.  It wasn’t until they were coming in to give me what they said was my “second-dose of steroids” that day that I began to be concerned.  My GI had said 30 mg of steroids, but the hospital heard it as 300mg and did not question it.  They were attempting to give 3 100mg doses throughout the day.  They insisted on giving me the 2nd dose as I was beginning to fight back.  I got my family involved.  I was telling the staff that my GI never prescribed more than 45mg, so I knew this wasn’t what he recommended.  They called my GI back and he was outraged.  I was so glad that I fought back and they finally listened, but it shouldn’t have taken that much effort for them to realize they were administering much more medication than I should have been receiving.  Needless to say, I blew up like a balloon.  Think Violet Beauregard.  My fingers were slowly turning into Aunt Marge’s from Harry Potter, and they hurt so badly they needed to be iced.  Thankfully, the swelling didn’t last long, and I went back to normal prednisone moon face, but that is not an experience I would ever want to repeat.

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A few months after my c. diff was cleared, my primary doctor ordered a bone density scan, which showed signs of early osteoporosis.  That obviously wasn’t just from this event, but also from the years during which I was steroid dependent.  Steroids definitely have their benefits in reducing inflammation, but they do have many negatives as well.  Though prednisone once provided me relief, I am personally glad that I no longer tolerate them.  Each patient needs to weigh the pros and cons in their specific case and make their own decision from there.  Moon faces, unite!

My Home Infusion Experience

I have tried my fair share of medication to find the right one(s) – including Humira, Remicade, and Entyvio.  Humira provided some relief, until my 4-month bout of c. diff – afterwards increasing to weekly injections without a difference.  During my last “loading” dose of Remicade, I began having drug-induced Lupus symptoms.  Though I’m not at 100%, Entyvio and methotrexate have reduced the inflammation and the amount of ulcers in my colon.

Until this year, my Entyvio infusions were in an out-patient hospital setting in one of the main branches of my hospital system.  Due to changes in coverage with Blue Cross Blue Shield, this was no longer covered, but they do cover home infusion care.  Especially with the current flu epidemic, I was more than happy to avoid the hospital and relax in my home.

5. Infusing

Because I was notified of this coverage change in advance, and I knew how long changes in care can take to process, I reached out to the home infusion provider in November 2017.  Unfortunately, I was still following up to get the order processed and authorized by insurance the week before my infusion.  Thankfully, once everything was processed and I was called by scheduling, there was a nurse available on Saturday and I had my pick of times.  With how close we were to my infusion date, that was my biggest concerns, so I was relieved when my appointment was finally on the books.

There were a few things that were different (and initially concerning) that I learned from the scheduling call.  The biggest one was that this company doesn’t use an IV pump to administer Entyvio since it’s infused through such a short time period.  Since I have always infused with a pump, I was nervous how they were going to time it for it to run at the correct rate.  Day of, I learned that instead of a roller clamp, the tubing had a twistable clamp with a variety of mL per hour measurements noted around the circle.

5. IV-Entyvio

Three days before my infusion, the company sent over my Entvyio, pre-meds, an anaphylaxis kit, and any other supplies needed for my infusion – including an IV pole.  Because I wanted a pole of my own with wheels, I ordered one (and a small folding table for the nurse to use for prep) on Amazon Prime.

5. Supplies Delivered

The nurse I ended up having for my infusion was extremely nice and very helpful.  Because I had gotten mixed messages from the company on whether or not my husband could be trained to flush my port, she walked my husband through the process step-by-step and wrote out detailed notes, just in case.  The infusion ran really smoothly, and it was interesting to see how the process differs from facility to facility.  I was nervous before the infusion, as I’m normally used to nurses who are balancing multiple patients, but I would be happy to have her as my reoccurring nurse.

5. Supplies Set-Up

It was a very smooth experience, and I am excited that I can continue my care at home.  Anyone who is considering home infusions, I would definitely recommend it if your insurance covers it.

Fund A Life

Today, I want to talk about a non-profit that, though I only recently became aware of, I am deeply passionate about them and their cause.  I first learned of it through a coworker who is the sister-in-law of the founder, Mark Howell.  In October 2012, he was diagnosed with Stage 4 Metastatic Melanoma.  Mark’s community raised hundreds of thousands of dollars to help him and his family cover medical costs.  Because of these neighbors, he was able to travel around the United States and get the care he needed to help beat cancer.  Mark wanted to give the same opportunity to others going through catastrophic life events.  In 2015, as a cancer survivor, he established the Fund A Life Foundation to support this effort.  They do constant fundraising so funds can always be available for those in need, instead of fundraising on an as needed basis.  As of now, Fund A Life focuses on the Michigan community, but has a vision to expand their outreach across the country.

Another one of our coworkers in no stranger to chronic illnesses.  His amazing wife has been battling multiple heath issues for years, only recently getting a diagnosis – Long QT Syndrome.  Many of her treatments aren’t covered by insurance, so hospital bills have been piling up.  She is one of the most giving, caring people I’ve crossed paths with – even when enduring tough times of her own.  She has helped family members get the proper resources when overcoming addiction and has saved dogs from abusive homes.  She has also volunteered her time to create a fundraising event for SADS (Sudden Arrhythmia Death Syndromes), a wonderful resource for people with heart disorders.

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Once Fund A Life became aware of their story, the began putting the plan in place to help and set up a surprise reveal of their grant approval.  I was brought into the surprise-planning process to help ensure he would be in the office.  I scheduled a fake meeting so he would be in our HR office – a more secluded area.  A few moments after he arrived, Mark walked into our office with a Publisher’s Clearing House sized check.  The recipient was truly surprised and very grateful.  He shared an update of their most recent medical battles and that his wife has been feeling anxious about the bills they owe.  I am also grateful to Fund A Life for providing an opportunity for this family to pay off medical bills and help in the recovery process.  It was a very special moment that I feel honored to witness.  Our company’s motion graphics team also caught the reveal and is putting together a video for the Fund A Life website, so you can share in witnessing the moment once the video is posted.

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I have reached out to Mark, because Fund A Life is a foundation which I would love to be involved.  If this non-profit could help you in your health journey or it’s a cause you want to help with, follow this link to learn more:  http://www.fundalife.org.