On Being A Chipmunk

For the past 2 months, I have been on a drug called Prednisone. This is my third round of long-term steroid therapy, so I'm not new to the side effects, but it still affects my life more than any other drug has. This past week my doctor said I could start decreasing the dosages (you have to do it slowly to give your body time to make it's own), so I thought I'd recap my experience this time through. There are plenty of side effects I haven't experienced, but here's what it does to me:

1. Observe above picture and compare to my profile picture to the right. Chipmunk cheeks! This phenomenon is known as Cushing's syndrome, which basically causes water retention in the face/cheeks and upper back/neck. (Google the term and check out the images tab). The first time I went through this, it was REALLY rough. The devil was constantly telling me I was ugly, fat, yucky, shouldn't leave the house, etc. The second time I went through it, it was difficult, but better. The miracle is that this time, while it somewhat bothers me that I don't look like I normally do, it really doesn't bother me NEARLY as much as it did before. In fact, I sometimes forget this is not my normal face! Ha! So that's a blessing. I am, however, looking forward to not having my fat face anymore. :)

2. Increased appetite. This is unfortunate if no one knows you're on it, because, combined with the above effect, one might think you're eating yourself into being overweight. But really it does increase your appetite. The best way I've found to combat this is simply KNOW that it will make me want to eat more and simply don't. There are a few times when I eat the chocolate cake or have another serving of broccoli, but for the most part, I've done pretty good. If you know you're more likely to want ice cream if you drive by the ice cream shop everyday, you avoid it. Simple as that. So I've learned to check myself and ask if it's my tummy or the steroids talking.

3. This is a small side effect, but it was really bad during my first round about 8 years ago. Long-term steroid therapy can cause muscle cramps that come on suddenly and, obviously, are quite painful. For instance, if I'm holding a pen for a long time, my fingers might start to cramp and then my hand is essentially "stuck" in that position until I can get it to relax. When I had my first round 8 years ago, I would kick in my sleep (dreaming? who knows) and that would trigger a ridiculously painful cramp in my calf. It was pretty annoying. This time, I'm pretty good at being able to relax the muscles and stop it within a few minutes. Mostly happens in my fingers and feet.

If you've ever been on Prednisone for a week or less, or at low doses, these effects are not likely to happen. It's only when you take it for long periods of time that it will do this stuff. I think overall I've had a MUCH better attitude and been blessed this time around, and can only attribute that to the grace of God and the support around me. Believe me, when you look different, it helps when your friends treat you as if you look the same. :)

Health Update!

It's been awhile since I've given a health update, and this next week is going to be a big one, so I figured it was about time.

My eye is getting better! It seems less and less swollen each day (though in very small increments!). I also have been noticing that the numbness in my left cheek/nose/upper lip is changing. I can't really describe how - it just feels different, as if parts of it are regaining feeling again, which is good. And my teeth that are connected to the trigeminal nerve (the one pinched by my eye swelling that feeds the nose/cheek/upper lip) don't hurt nearly as bad or weird.

We made a pain medication change on Monday. Before, I had been taking some sort of painkiller every 4 hours, which made for quite the planning and inconvenience, and I had to eat every 4 hours with the medication, thus plan when and where I would be. There were a few times I had to be in pain for a bit until I could get some food in my tummy. Last week, though, I noticed the Tramadol was only lasting about 3 hours, when on the label you're only supposed to take it every 5 hours. I had been taking it every 4 hours, but when I told my MD it only worked for 3, he suggested we switch to Ultram, which is an EXTENDED RELEASE version of Tramadol. Why is that in caps?

Because that means it releases over a long period of time, as in, 24 hours. As in, I only have to take in ONCE a day. Just once! Amazing! No more waking up at 4 am to take meds, then again at 8, etc. No more worrying about whether I had food for my next dose! And it's worked pretty well. I'm still allowed to take a vicodin every now and then if it gets bad, but I only had to do that once this past week. The Ultram was more expensive ($90 bc it's name brand - generics under my insurance are only $2!), but it's SO worth it. I haven't slept fully through the night yet, but I know it's coming!

I also received a letter from my MD with my recent ANCA lab results - they've improved! Basically the ANCA marker is used to determine the autoimmune activity in individuals with my disease. The letter didn't say what the actual number was, but when I read it I just knew that it was the Lord's process of healing me. In addition, I have been on a steady decline on my Coumadin dosage (blood thinner). A few months ago, I was sailing steady at 15 mg/day, but now every time I get my blood checked, it's too thin so we decrease the dose. I'm now down to 2.5 mg and 5 mg alternating days! Just another sign that God is in the process of healing me completely and fully from this!

So on Tuesday I travel back to Houston to meet with the oculoplastic surgeon. He said last time that if my eye isn't better at the next visit, he would refer me to a rheumatologist he works with there. Based on the above and how I'm feeling, I would say that's probably not going to happen! My prayer is that he would come into the room and be amazed that there is no disease or inflammation anymore! I would be healed! So excited to see what God's going to do!

How do you deal with change?

Last week I attended a training for work entitled "Leading Staff Through Change." It's technically only offered to the leadership positions (supervisors, managers), but my director wants me to take a few of them to get some good education, and I am actually on board with that idea, so it was a win-win. The class was really interesting and I even used the assessment we took (see below) during our staff inservice this year.

The class brought me back to my phone interview for my current job (in which, btw, I had lost my voice!). They asked me that exact question: "How do you deal with change?" Considering I was an intern about to graduate with a Master's degree and possibly move out of state or wherever God led me, I had been thinking about change a lot in the previous few months. I remember answering that I'm very open to change, and realize that it's good in the long run. Staying in a rut is bad.

So when I took the assessment below, I was not surprised to be an Explorer. I took time to figure out what each of my coworkers were, and we have a good mix. So, what are you? How do you deal with change?

(Note: I thought I would be able to find the assessment online for free, but have had no luck so far. If I can't find one soon, I'll post the change personalities instead... sorry!)