After the first visit hesitation, I have looked forward to my visits with Dr. I immensely. He is such a genuine guy, never making me feel as if I am one of his many patients. I always feel like I am number one when it comes to him. I think part of the reason why I feel like that is because he came to visit every day when I was in the hospital. The new pharmacist asked if that was due to the fact that he had to, but I said absolutely not, he came to ease my mind. At least that's how I saw it.
Why am I talking so much about Dr. I you may ask? It's because I had an appointment with him yesterday.
Yesterday was the first doctor's appointment I had in months. Seriously, I had not had to step in a doctor's office since May/June and I could not be happier about the fact that it is months between appointments for me. I guess Irene is thanks to that, but I still feel like it's a huge relief that I don't have to see a doctor every month like I had been.
Anyway, we discussed my progress per usual, but we also discussed taking me down my steroids once again. Now we are going below the dosage I was on before going to the hospital which is exciting because I have no had any flair indications at all. So small victory on that part. He did say that when I see him next, which is in a few months, I should be off the steroids!!! This will be around the year anniversary of these whole shenanigans starting so I could not be happier with the idea that another one of my medications will be discontinued when the year anniversary occurs.
Anyway, I also learned my weight with this appointment and while it's completely fine with my height, I'm still not fully okay with it and will begin running on Monday to become more in shape. Please don't roll your eyes. Being in shape and being skinny are two completely different things and I need to start running in order to not only sort things out in my life in my head, but also to feel better about myself.
Dr. I and I also discussed what happens during flare ups. Those damn things scare the hell out of me if I'm going to be completely honest. Last flare up I ended up in the hospital, and a friend was recently hospitalized when she experienced a flare up. I just do not want to end up in the hospital again. That was not a fun experience at all. He told me how a flare up would work in my situation and if I am understanding him correctly, it shouldn't occur if I stay on top of my medicine. This is not to say that the medicine will eventually stop working. I had to take blood work immediately following the appointment to check various levels, one being my liver level. He said that it had been slightly elevated which was not caused for concern but he wanted to keep an eye on it which is why he asked for the blood work right after the appointment.
If I'm going to be completely honest here, I'm completely terrified. I'm terrified that I will end up in the hospital again for a week, or even longer, without many people who will want to visit me. I'm afraid I am going to eventually have to give up my favorite food because it causes a flare up. I'm afraid that at the age of 24 I am already taking 10 different pills if I don't count the steroids which I will be off of hopefully by the end of the year. And I'm afraid that this stupid disease is going to control my whole life. I have had to worry about my pills whenever I go anywhere. I have had to worry about the nearest bathroom and stomach pains whenever I go out. I'm not a fan. How do you explain this thing to someone who has no experience with it. Luckily I have friends who also have it so our group has become understanding about it, but still. How do I even begin to explain this to people who come into my life in the future? This damn thing has been a pain for close to a year now, and I have tried to hide my worries from everyone. But what I would not give to be normal again. With a normal stomach that I no longer have to worry about medicine, and blood and enzyme levels.
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