Tuesday, April 20, 2010

Wegener's Sucks

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 blog@willowandme.com).  Thanks.


  1. Lisa - You are not alone! I don't personally have the same auto-immune disease but I do have two others. I was diagnosed with Behcet's about 12 years ago and recently with celiac disease this January. I know how hard it is to have something most people don't know anything about.

    Celiac is pretty common now so that's not a big deal and finding foods is much easier than it used to be. Having Behcet's is something altogether different. I don't often even talk about it anymore. It's just something I live with everyday.

    I know it's discouraging and depressing and I work really hard to not let it rule my life. I take a bunch of pills everyday too. It's not that much fun at all.

    I just want you to know that I hear you and can understand in some small way what you are going through.

    One day at a time is the only advice that I was given that actually works.

  2. Gosh...huge hugs to both of you! Lisa, I am so sorry you have to go thru this. I so admire your work. Your jewelry is so beautiful, and now I know what you have to endure to create it. That makes it even more beautiful and special. I wish I had some great words of wisdom, but words fail me now. Just know that there are some of us out here in this big old world that care about you, even if we have never met in person. Try not to be hard on yourself. And please give yourself a big pat on the back for all the things you do accomplish while enduring this terrible disease. And for taking care of yourself and not giving up.

  3. You are not alone :) My mom was in kidney failure and on dialysis. We prayed for a kidney and she got one... It failed. I do understand the nasty meds you have to go through. Probably some of them the same as my mom. The aches, pains, bruising. Know that people around you care. I'm glad you posted this on our thread. I love it that you keep your head up and truck on through all of this. I had really never heard of it before. I admire you through all your ups and downs. Big Hugs to you and Willow!

  4. New follower to your blog and fellow Etsian. I was recently diagnosed with Lupus another Auto Immune disorder so I can somewhat relate. While I don't have the serious symptoms you mentioned I do understand your aches and pains, when you're so tired all you want to do is lay around.

    I'm sending you big Ehugs and I'll keep following you and sharing your story and mine to educate more people about the "mystery illnesses" that auto immune disorders consist of. It is really hard when you don't look sick but feel like crap all of the time. No one really understands so it helps to have others to talk to.

  5. Thank you so much, everyone for you kind words and support. I am truly overwhelmed by the kindness of so many people.

    Anise, I am so sorry about your mother. That must have been hard.

    Janie, thanks! I so appreciate the care!

    Elizabeth, hugs to you, too. I have heard so many nasty things about Lupus. And I hear you about just wanting to lay around.

  6. Hi there are a mess of us weggies on facebook that support one another. Come look us up! Christine Marie White :)

  7. Lisa,

    My husband just found your website blog on Wegener's tonight. He was diagnosed with Wegener's about 18 months ago after 14 months (and 3 scary hospital visits) of not knowing what was wrong with him. He read your article and said that he could have written it himself! Thank you for your blog on this. Everything that you have written he has told me, and it made him feel like someone understands how he feels after he read about your experiences. And, I thank you for that! He has really felt alone and I really feel like I can't help him feel better which is very frustrating to me! Are there any Wegener Support Groups out there that you know about? I hope that you are in remission now and feeling better. Good Luck!

  8. I have been recently diagnosed with Wegeners Vasculitis. I am so grateful for you writing about this. I am in a kind of isolated rural area, and nobody seems to know Wegener's exists.. I have already gone through two surgical procedures on my lungs. I was put on high dose steroids for 5 months. I now have the pain of rheumatoid arthritis. I am very tired all the time, can't sleep, and suffer terrible migraines. I am feeling ready to lose my mind, because from the outside, I appear to be fine. I am scared to death about the side effects of the treatment drugs. I need people to talk to who know my pain and frustration, and can offer insights and support. Thank you. Please contact me @ eaovercome@gmail.com


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