I was reading the Wegener's forum today and an old post had been revisited. It was about what everyone had learned since their diagnosis. While my actual, official, 100% for-real diagnosis is about a week old I am not sure much has been learned in that time but, I've had this disease floating around in my peripheral since January so there have been many-a-lesson learned in that time.
Where would I even begin?
First and foremost, doctors aren't always 100% knowledgable on everything. There are certain specialties, and some never, ever heard of what I have. I've seen many a doctor stare back at me blankly when it's mentioned. Also, even if they've heard of it, specialize in what would deal with it, they aren't always completely informed on how to handle it. Case in point, my first rheumatologist didn't want to diagnose me because I wasn't dying. Glad I moved on so that I didn't have to wait til that point to finally have a diagnosis.
Secondly, I've been reminded, as I was already taught several times, that life is wholly unpredictable. You can eat healthy, exercise, work hard, be a good person and still something bad can happen, or your life can change directions without notice. I had adopted a Paleo lifestyle because it had been touted as the best way to eat and that people had been cured of lifelong illnesses ... and that was when mine popped up and no, Paleo living will not cure what I have. I do have a gluten intolerance so inflammatory foods are a no-no. (I ate bread today, I'm not doing well with cutting it out!!!)
Death can and will happen to every single one of us. No amount of driving perfectly, eating right, or whatever can keep it at bay forever. And for me, I can't NOT think about that. Every twinge, pain, cough, sneeze, ... it makes me wonder if I am going to flare back up, be worse, shoved in a hospital, etc. I am trying to learn not to think of that, but it lingers in the back of my mind daily.
It is important to accept what's happening and LIVE with it. I can't lock myself in a room and hide. Well, I could but really what good would that do, it's not going to go away. Acceptance! It's how this blog started. Accepting that I was a cancer patient just like the generations before me. And now, I am accepting my life as a Weggie, a patient with vasculitis, a sufferer of Wegener's Granulomatosis. A lifelong, life threatening condition that I will have to manage and maintain.
Little things mean everything!!! A good book, some writing time, a moment to sit in the silence, birds flying in the sky, fluffy white clouds on a vibrant blue sky, the bold green of grass, the popping color of flowers. The song of crickets at night in the dark, twinkling stars hanging against a colorless black sky. A huge moon coming up over the horizon. The smell of flowers, grass, life in the air (except marijuana *GAG*). The scent of a fresh rain, the sound of rain on the glass, on the roof, on the sidewalks. Waves crashing against a beaten smooth shore, the flapping sound of my puppy's paws in the wet sand. Loki's huge gigantic ears, his sweet smile, his fluffy peach butt, puppy cuddles, my cat purring in my ear, and yes ... even the husband snoring.
Even the best laid plans can be changed. Don't put things off for tomorrow because what you put off may not be possible tomorrow ... or tomorrow won't come. Live for today. Live for the moment. Try not to let the darkness swallow you. It's easy to sink into the sadness that lurks, waiting for a weak moment. Don't let it get to you.
I've learned that I didn't think I could celebrate being diagnosed with a life threatening illness, but I did. When you're sick for as long as I have been and everyone has been scratching their head or denying what was going on ... it's easy to be over the moon and happy to have a name to associate with what's going on. I now have my support forum I've found, I can run things by them, by my doctor, etc and not feel like I'm talking to a brick wall. I have my family and friends whom I need to make more of an effort to be around. When I'm alone, I can feel the darkness creeping up behind me, trying to engulf me. I need to get outside and walk with my doggy more. He loves it, I love it. It's good for both of us.
I let my overtime get a wee bit out of control and I need to reel it in, focusing on what I actually need, and not taking what I don't. Right now, I do need to maintain at least 25 hours. It's a lot I know, but I don't need anymore than that and I find myself with more than that. I need to make a conscious effort to stay away from that. I know, I've said this all before. It's a learning process, I latched on to what I know, what I could control. I felt like I was in control when I was able to get lots of hours. I had control of SOMETHING because I am not in the driver's seat with life right now. You know? But, I am in control of it and I need to take care of it.
There have been many lessons I've learned in recent months, and there are many more still to be learned. I will take them as they come and use them for my life. Hopefully, there's still a lot left to live.