I've held off on writing this post because I haven't felt great and I needed to get some things figured out at work. Now that things are ready to move forward, I'm ready to talk. Thanks to the steroids, my count today was 218,000, which is amazing for me. It also means my body has been working in major overdrive.
Jimmy and I made it into the clinic Wednesday morning. At the appointment, Dr. M looked me over and we decided that other than the nosebleed, there was nothing that would have brought me into clinic or needed treatment. We had a good deal of discussion about what would come next. Chronic diseases flare up occasionally. I haven't had major flare-ups since high school and college (when I was a standard, once-a-month fixture in the Duke Children's Hospital). Dr. M thinks this is a flare-up and I agree with him. Since the school year started, I've just been off. I've had the female symptoms and just haven't felt as good as I usually do. The conversation I've always had with Dr. M is that when my symptoms start affecting my quality of life, that's when we need to start some sort of maintenance treatment. I told him Wednesday that I put it in his hands. I said, "I can't have nosebleeds like this and live my life, work, and do the things that I love. I'm ready to start this medication whenever you say it's time." Dr. M said, "Okay, it's time."
Nplate is the new drug I will be taking. It is a subcutaneous shot that is platelet growth factor--if you remember the red blood cell stuff Lance Armstrong got in trouble for using, this is the same thing, except for platelets. The medicine has only been on the market for 2 years and is a controlled substance. This means that before I take it, I have to have blood work done to help determine the dosage and make sure my count is where it needs to be. Nplate is not used to make a platelet count within the normal range (150,000-350,000ish), but within a safe range, approximately 50,000. I am also now in the Nexus Nplate registry. Part of being on this drug means the drug has to be administered in the office of the prescribing physician, which also means I will be going to Duke once a week.
This was the most stressful part for me. The medicine doesn't scare me because we have been finding out information on it for about a year. But what am I going to do with my "kids"? Thank God for a supportive work family.
I spoke with my principal on Thursday. She was truly wonderful. I found a sub who is able to come in for the Mondays between now and Christmas. My kids will work hard for her and I know she will do a great job. I am blessed beyond belief with my students. They are one of the best behaved groups of kids I've ever taught. My wonderful coworkers have also been just amazing. Despite being on steroids and not feeling like myself, I've been humbled by their kind words, thoughts, and offers.
Segueing, this round of Dexamethasone/Decadron is much different from what I remember. I am much more in charge of my emotions and haven't had major mood swings. However, I am in a lot more pain than I remember being in before. My bones, teeth, and stomach hurt. I've been hungry, but certain foods turn my stomach and don't taste normal. I've woken up about 3:45, 4:30 the past few mornings just wide awake. I've been trying to listen to my body and do what it says to make life easier for these 4 days. Tomorrow is my first day without steroids. Coming off of them will be very difficult--like going 100 miles an hour then hitting a sudden stop. Again, I'm very thankful for my wonderful husband, who I have warned and my father has pitied for this round of steroids. Even when we forget, God is looking out for us.
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