I'm going to try to not sound all "Woe is me" on this one. Stick with me. By the end, it should make sense.
The problem I am having, mentally as well as physically, is the lack of improvement in my general health. Obviously, there is no quick-fix, and I have been told that I will be on all of these medications for months, and lower doses for possibly years. Still, I had hoped to see some kind of uptick by this point. In fact, stairs still give me trouble, the chest tube hole is still leaking, my suppressed immune system has given me a slight cough, which doesn't help the lung that had the tube in it, and I am still very anemic (Yesterday, I received an injection of iron in my blood which was supposed to help with that, but it really just gave me a metallic taste in my mouth. And freaked me out a bit because it was black.) I have appointments the next few weeks with various specialists (lung, kidney, blood, and whatever the Hell a rheumatologist specializes in), and they all seem to have their own ideas on how treatments should proceed. I feel kind of like that episode of Curb Your Enthusiasm where Larry is trying to decide to trust the doctor or the pharmacist.
That's the physical part of it. Mentally, the challenge is trying to get back to something resembling normalcy. Part of me (the brain) knows it will take time, and this is a bump in the road. The other part (like the little devil that sits on the shoulder of Tom before he hatches his Jerry-snatching scheme in the old cartoons) says, "You're 35 now. This disease struck you when you were in the best shape of your life, and it had taken all your energy to get there. Pack it in, lard-ass. You'll never have that strength again. Kiss the hundreds of sit-ups and push-ups good-bye."
***I should note that the high dose of steroids I'm on makes me kind of bloated, and kind of hungry. So while I suppose I'm not a "lard-ass," in the conventional sense, I do weigh more than I have ever weighed in my life. And come on, this is my complaint here.***
One of the problems I have encountered is that some people don't "see" the problem. Specifically my Dad, who keeps telling me that I should go back to work, and that I can't "milk it forever." And, bless him because he means well, but my brother too, who gave a slight chuckle when he asked how I was doing and I answered that there was no real improvement. Maybe it was my delivery. It's not their fault, really. They see that I am up-and-about and hear my voice and figure that this guy is doing okay. The fact that no one has ever heard of Wegener's before seems to be the stumbling block. If I had cancer, they would probably react differently, despite the fact that they are very similar diseases as far as I can tell, and I was actually given a chemotherapy drug to treat the Wegener's. Not saying I wish I had cancer obviously, it's just interesting to note people's reactions. The fact that my own father, who saw me in the hospital every day for the over three weeks I was there (all told) would suggest I was milking this is a bit hard to handle.
But then there is also the rest of the world. Pretty much everyone at work, close friends, even facebook friends whom I rarely see in "real" life have all wished me well, or simply asked how I am, or told me to just get better, fight thins thing, and not worry about the other stuff like getting back to work or not being a lard-ass (Okay, that was me. No one else actually believes me to be a lard-ass.) I posted a picture of my iron IV yesterday while I was waiting, and almost instantly had responses from my online support group. A lot of them Iron Man jokes, but still, they cared.
Obviously, my dad cares, too, but these are the folks that really help me through. Just the simple, "How are you's" and "Hope you're feeling better's" make it that much easier to carry on. And the cards and emails and texts and messages and all the other billions of ways to communicate these days have really overwhelmed me. I've kind of criticized the whole social networking thing and the misuse of the term "friends" in the past thanks to facebook and things like that, but I may have been being a bit too hasty in my judgment (I know. Me?) You are my friends, anyone who sent me a card or a message or thought of me or asked how I was or hoped I got better, anyone out there in the world who sent any kind of positive vibe, regardless of how I know you, you have contributed to my feeling better in no small way, and for that, I thank you.
Now let's get these "specialists" to do their job, and we'll really be rolling.