I've been feeling sorry for myself a lot lately. Unfortunately, it happens more than I care to admit. I've been sick, with a cold that made itself so comfortable in my lungs that even a week's worth of antibiotics couldn't make it go away. Or else maybe it's my new normal to have my chest hurt when I breathe. I don't know anymore.
Originally, I was going to write about the treatment I have undergone with Wegener's for this post, but I have decided to share my misery with you instead. Probably misery is too strong a word, but I sure do feel like crap in more ways than one. When I started writing about Wegener's this month, I had visions of reaching hundreds of people through the power of the Internet. I know I don't have very many blog or Facebook followers, but I was counting on the fact that some of my followers would pass on and it would all snowball into one great discovery of a rare disease. Well, that didn't happen. As far as I know, I have had seven different people repost, tweet or share on Facebook a total of 13 times. I didn't ask for money. I even had a giveway as a prize. The more someone shared with others the stories on Wegener's, the more chances to win they would have. Perhaps no one liked my prize. I thought it was pretty good and it was my first attempt at using both copper and silver clay together. *sigh*
So then I have asked myself is it because my stories are boring? I'm sure they are. I bet reading about Wegener's is not any more fun than having it. So, wallow with me, will you, a bit as I talk about what it's like to live with Wegener's? I'll try not to whine too much.
What's it like to have Wegener's? Well, sometimes it is only a minor inconvenience and other times it really sucks. At the best of times, I have a runny, stuffy nose. Whenever I blow my nose, I either blow pink stuff or dried, crusted blood. I have a hole in my nose and I whistle when I breathe. Probably no one can hear it but me, but it's annoying, especially when I'm trying to sleep. I find I breathe through my mouth a lot because I don't always feel like I'm getting enough air and my mouth is always dry as a result. On good days I have enough energy to get through the day. I try to exercise because I know that is good for me for many reasons, and I do walk mostly, but when I try to step it up, my hips and knees start to hurt. My left elbow and my right wrist hurt almost all the time and I get sinus headaches fairly often. Naprosen is sometimes my best friend. I take what seems like a bazillion pills a day for all my various ailments. Once a week I give myself a shot of a toxic medication that slows down my immune system. I have to be extra careful not to catch anything because whatever I get always goes into my sinuses and lungs. I'm supposed to do two different inhalers a day but I'm trying to wean myself off those to see how my lungs feel without them.
I'm one of those "high risk" people who had to have the H1N1 and seasonal flu shots. That's no big deal to me, because I have never really been bothered by needles. I bruise easily and cuts don't heal as fast as they used to because of the Methotrexate injections. Thankfully, the folic acid I take helps counteract the nausea I had when I first started the injections. Just as another annoyance, my hair has changed. I am thankful I haven't lost it (which my doctor tells me is possible, even on the lower dosage of MTX that Wegener's patients take), but it feels all wispy now, like old lady hair. I have to have blood and urine tests every two months to make sure my liver and kidneys aren't damaged by the disease or the medications I take to fight the disease.
When it's bad, it's really bad. Take everything above and add nosebleeds a couple of times a week, difficulty breathing and chest tightness even without exertion. Aching in my joints, especially my hands, so bad that I can't type or do my work without stopping to rub my hands a lot. Exhaustion. And much, much more. And I'm one of the lucky ones - my Wegener's is considered limited because I have no kidney involvement. I can't imagine having to undergo dialysis or having my trachea stretched because the Wegener's causes swelling that tightens it up so you can't breathe.
Sometimes worse than the physical problems are the mental ones. I get frustrated with myself when I don't have the energy to do something. Each time I have an ache or pain that's new I wonder if the Wegener's is spreading. As I type, my chest hurts every time I take a breath. Does that mean the Wegener's is causing more problems with my lungs? I had a chest x-ray today, so if there is damage, it will hopefully show up. I read once that Wegener's patients often don't look sick. So it's hard to reconcile the way I feel when I look just fine on the outside. And I try not to complain too much so most people don't know that I even have this stupid disease. Each time I have to get stronger reading glasses, I worry that the Wegener's is affecting my retinas (there are some preliminary studies that link Wegener's to retina damage - and I already have early-onset macular degeneration). I worry about what will happen if it spreads to my kidneys. I worry that it's a potentially fatal disease.
I know that I should be thankful that it's not worse. I can still do most things as long as I take care of myself. I don't have cancer and I'm not incapacitated. Most of the time I am thankful, but sometimes it's not easy to be thankful when you don't feel well.
So all in all I would have to say that Wegener's sucks. Having it sucks. Being tired all the time sucks. Trying to explain to people what it is sometimes sucks. So please help me spread the word. Tweet about it, post about it, talk to someone about it. And let me know that you have so I can know that maybe the word is getting out (email me at firstname.lastname@example.org). Thanks.
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