The Trouble with Being Human (Part 2)

I’d been in remission for about a year and a half.  The miracle drug had worked and I had been physically “normal” for so long, I’d almost forgotten what it was like to be sick –almost- and then, sitting in the middle of my New Testament Survey class, I felt it. The only way I can describe it is to call it a “pang” in my lower left side. I have no idea what it is, the first “break” in the lining of you colon or what, but if you have colitis, I’m sure you know exactly what I’m talking about. 

With my remission, my body had been okay for the most part, but my emotional and spiritual well-being had suffered more than I’d let on. As I said in my last post leaving sports medicine behind had been heartbreaking for me and, since then, I’d switched majors 3 times –the final switch involving the transfer to a private Christian college in hopes of pulling myself back together.

The fear that crept upon me the moment I felt that pang was maddening, but I tried not to panic. “You’re going to have flares,” my doctor had warned. “That’s just part of it. Sometimes, they’re triggered by stress or sickness. Sometime they just happen. This disease is one big wild card.”

With that in mind, I called the doctor and he temporarily upped my medication and told me to keep him updated over the next few days. I did. It didn’t help, though, so he put me on another medication that usually helps get flares under control. Didn’t help. He put me on another medication. Didn’t help. He put me on a steroid, which seemed to work for a week or so, and then it stopped. Finally, after a month or so, he told me something I really didn’t want to hear.

“Well, I was hoping this wasn’t the case, but I’m afraid it might be. Flares are normal, but because we can’t get this one under control, I think we’re going to have to try something different as far for the long-term goes because I believe your maintenance medication has stopped working. Sometimes that happens with the weaker drugs.”

Without going into a whole lot of explanation, the next step was to put me on a biologic immunosuppressant, which terrified me for three reasons: (1) The side effects can be really scary. (2) I was going to have to give it to myself via injection every two weeks (back to the needle and wimp problem again). (3) I’d recently decided to change my major to nursing because I missed the medical field so much.

“Don’t worry,” he said. “I treat nurses who are on this medicine. They manage alright.” This assurance pacified me for a while, at least until we got closer to my actually starting the medication (getting it cleared and ordered is a bit of a long process) and everyone kept telling me how vital it was for me to avoid infections and stay away from people who were sick. However, every time I voiced my concerns, I was assured that there were nurses who were on this medication and they were okay. TO THIS DAY they tell me that, but the logic just doesn’t add up in my mind.

Anyway… I’d been in a flare since April and I started the biologic in August, I think. In the those three months, my case had been upgraded from “mildly moderate” to “moderately severe,” and I was in as bad or worse condition as I’d been in in the beginning. Again, I was starting school (having left the private school and returned to my original college) with an intense schedule and poor health. This time, however, I wasn’t able to handle it as well. By mid-September, things had really gotten bad. I was bleeding constantly and severely, I woke up tired every morning because I’d been up all night with unbearable stomachaches, and almost everything I ate made me sick. I was rapidly losing weight and found it harder and harder to get around every day. As a result, I was struggling to keep up with my classes and was exhausted beyond comprehension.

I’ll never forget the day I went to my regular physician to for my nursing school physical. I’d never felt so bad in all my life. When I got to the doctor’s office, I already felt like I’d reached some sort of breaking point. When the nurse led me back for my eye exam, I could barely read the chart through the tears welling in my eyes –tears of sheer exhaustion. I passed, though, and she took me on into the room to take my pulse and blood pressure. Upon taking them she informed me that both numbers were higher than usual and when she looked at my application, she told me I was missing an important sheet required for my physical. At this, I nearly lost it. I wasn’t in the best frame of mind that morning and neither was she, I don’t think, because when I asked her to explain what I needed, she was kind of rude about it.

As soon as she left, I felt myself start to come undone and no matter how hard I tried to get it together, I couldn’t. When the doctor walked in and asked how I was doing, I burst into tears and began sobbing uncontrollably. He hurriedly shut the door, grabbed some tissues, and asked me what was wrong. All I could get out was, “I feel so awful! I never cry.” 

“Okay,” he said, gently. “This is a safe place to cry.” Then, he just let me cry and patted my shoulder until I was able to tell him about how back my colitis had gotten. I’ll forever be grateful for the way my doctor treated me that day. *For anyone reading this who may be going into the medical profession, NEVER underestimate how your manner affects your patients and your coworkers. The nurse had upset me so much with her rudeness that I was in this state, and my doctor was having to deal with the mess she’d created.

Finally, he just point-blank asked me if I thought I needed to be hospitalized. Looking back, I probably should have, but I wasn’t processing everything well enough to realize it, so I told him I didn’t think so. So, he filled out what he could of my physical and told me how to get the paper I needed for him to finish it. “Just bring it back and I’ll sign it, but listen. If you get ANY worse, you’re probably going to need to be hospitalized. Okay.”

I remember simply nodding and then wandering out to my car, where I fell apart again.

A week later, I was back in the doctor’s office. This time, because I was unable to eat anything without vomiting, could hear my heart beating in my ears (at a much higher rate than normal), and could barely get out of bed. When I did get out of bed and try to walk around, it was hard to breathe. Five minutes into the visit, my doctor ordered a transfer to the hospital and told me he’d see me that evening when he did his rounds. When I got to the hospital, they drew some blood, and about two hours later, my doctor arrived with the results. As usual, they weren’t too great.