It's been awhile there folks......

Hello Faithful readers…..

I’m sorry I haven’t updated in awhile. Quite a lot has been going on in my little world lately and it seems as if it is just now only dying down. So, I took the plunge. Snagged me a husband. Became a Mrs. Got Hitched. Yup. I’ve actually been married for almost two months now. Two months on October 4th! Time certainly flies. The day certainly flew. It felt like one minute it was 4:00 am and I was saying “Oh-my-goodness-it’s-my-wedding-day” and the next minute it was 11:30 pm and I was saying “Oh-my-goodness-my-wedding-day-is-over”. I fooled a whole bunch up too…..I forgot my pretty unity candle holders (the ones from Michaels that were absolutely beautiful!), forgot the “throw-away bouquet”, forgot the “throw-away garter” , forgot my speech, forgot my list of pictures that I wanted taken (so, I didn’t get the pics I wanted) and here’s the biggie….I FORGOT MY FAVORS!!! Yup, sat down for hours with my nieces, tying tulle and ribbons and here I left them in the fridge! Now, how stunned is that? My advice to anyone with upcoming nuptials, have a “wedding day coordinator”, if I had my time back, that’s what I would have done!! But, I don’t have my time back and it’s over…..It’s sad really. Two years of planning for a day that goes by so quickly that I can’t even distinguish if it was a dream or not. But, I have my hubby and we’ve started our little family (by family I mean, me, hubby and the furbabies….no human babies….yet). Now, all I have left to do is get all my thank-you cards out and give it the rest of my Bridal party gifts (OOOPS). But, this is not a “wedding blog” it’s a WEGENERS BLOG….YAY! Well, maybe not “Yay” but, meh!


Is it Flu season Again??.......


So, I’ve been quite sick for the past couple of weeks. It all started off about 3 weeks ago when I came down with the flu. It started in my nose and worked its way down to my chest. I was coughing up grosseties (I know, it’s not a word, but, it’s the only way to describe it), was stuffed up like crazy and eventually lost all the hearing in my left ear. Do you know how frustrating it is to not being able to hear? I found myself shouting half the time and completely ignoring people the other half of the time. But, I digress…..anyways; my doctor put me on 2 different lots of anti-b’s. One was for 10 days and the other was for 7 days. Neither lot worked. Finally I went back to her and that’s when she dropped the bomb. She thinks I’m having a Wegener’s flare up and needs to up my prednisone. She said, my symptoms should have been cleared up with the antibiotics, but, those symptoms were the same ones I got when I first got diagnosed. Gross, hey? But, never fear, I didn’t believe it. I know my body and I know how I felt back then compared to now. And I don’t buy it. It would explain it, but, I don’t want to believe it. Now, the day after W-F Bomb hit, my ear miraculously popped. I was able to hear again! Yay! So, I took that as a sign that my “cold”, “infection” WHATEVER was starting to clear up and some of those “grosseties” were moving on. So, I didn’t take the extra pred and decided to wait until I go back to Dr. K for my regular appointment (which is Wednesday). So, I’ll know for sure what’s on the go when I meet with him. My lovely little nephrologist….whom I kinda miss, actually?!

A month? WHAT?............

Why do I miss him when I see him weekly, you say? Because, I haven’t had an appointment with him in about 5 weeks! The last time I saw him, he informed me my disease was “stable” and I didn’t need to be monitored weekly. Good news, hey? Wonderful, we thought……until the old flu bug came around. We’re also waiting on a chest X-Ray which I got on August 17th, but, it’s STILL not back yet!!! Apparently they don’t have enough transcriptionists in this province to type all the stuff up, so, there’s a big backlog of reports and apparently my chest X-Ray is one of them. Hopefully he’ll have it when I go in to my appointment. I’d like to know how Wegener is making out in there. Last time we had an X-Ray; the granulomas had moved from one lung and started to latch on to the other one. Hopefully now the savages have disappeared. Let’s cross our fingers! I believe that’s what the cyclophosphamide is supposed to do…..banish the buggers. The sooner I can get in to remission, the sooner I can get off these pills…..then, I can put some normalcy back in to my life. I can lose the pred weight, lose the pred pimples, lose the moonface, stop having pains in my hips, stop feeling as if my heart is on overload and start living outside of the bubble! I want to have babies in a couple of years and being on these ugly medications is not allowing me to do that (not that I want to birth a child right now, but, I’m just sayin’). SO, other than battling the flu-like-symptoms and all the pred symptoms…..I’m best kind! Just waiting for this phase of my life to pass over.


While I’m waiting…………..

I’m going to do something about all of this. I could sit here and complain and blog about my symptoms. Sure, it may help people down the road who are experiencing the same thing as me and it does keep my family informed (though I may no longer have any readers as I haven’t updated in SUCH a long time, if you’re still out there, please comment :) ) but, I’m actually going to DO SOMETHING! Here it goes; I’m starting a Newfoundland Chapter of the Vasculitis Foundation (VF). I’ve been in contact with the VF and they’ve been sending me all sorts of information on how to go about doing something like that. I think it’s going to be a pretty big task, but, I’m up for it. Hopefully, eventually down the road, by me starting this, there will be more information out there for Newfoundlanders about vasculitis. I mean, who else has heard of it before? And I don’t mean from Dr. House, either…. So, it is my “mission” to make people aware. I’m going to be doing fundraisers, events, support meetings etc. etc. etc. SO, I’m counting on you, my family and friends to help me out with this one! But, you’ve all been so supportive along the way, so, I know it won’t be a problem!! I’m just waiting to hear back from the VF person to get the last little bit of info before I can this ball rolling. Then, it’s off to the media! Hi-ho-hi-ho it’s off to the media I go. Hopefully they’ll be interested in my story! I mean it IS are rare disease and it HAS been on House……..so, maybe they’ll be excited to stop reporting about missing ducks from the duck pond and start reporting on something a little different. Hopefully…..again, cross your fingers…..very tightly this time. I’ll keep you posted!

The end……..

So, that’s it for me…that’s all she wrote. Literally. I think I’m going to be updating this more as I go about this VF Chapter starting journey. I’m sure there will be lots to tell! I’m quite excited about it and can’t wait to get it going! Yay!

A little bit of good and a little bit of bad

July 21? WHAT? July 21, where has the time gone? I can’t believe it’s actually been almost 2 months since I was diagnosed with Mr. Wegener. It’s peculiar because for a long time Wegeners was something that was so new and so scary, but now, it’s just so routine. Which could possibly be even scarier than when it was new. I’ve become an expert in my own disease. I could possibly even write a book about the bugger…..though; I don’t think I’d attempt that. I hardly have time to update my blog these days, let alone write a book! Let’s step off the Weggie train for a minute and hop on to the Wedding wagon. I haven’t been able to update because as you know, I’M GETTING MARRIED IN 2 WEEKS!! Yipppeeeeee……Yes, I’m quite excited. Everything is getting down to the final little details and it’s pretty exciting. It was so nice to have something so wonderful to look forward to while going through all of this. It was great to have something to keep my mind off it all too! If I sit and dwell on it, that’s when I start to get a LITTLE freaked out. We also have a honeymoon planned as well (we hope). We DO have a trip planned, but, have run a little over budget with the wedding, so, we’re not sure how much of a trip it’s going to be, but, at least we’re getting off the Island for a bit! I have SOOO many things to do this week and to finish off a hectic week, I have my BACHLEORETTE PARTY!!! YAYA….I’m really looking forward to that. Anyways, let’s jump back aboard with Wegeners.


It’s All About the Weekly Visits……..

Oh, those weekly visits….I’m still having them and still getting poked in the arm with a needle each time I go. It’s so funny, well not HAHA funny, more like, “odd”, the ladies in the blood lab know me now. The lady knows I come in every week and she knows I’m afraid of needles. She also knows I have small rolling veins and there is only one vein that will happily give them some blood (let’s call him Vince). So, she uses that vein each time. Last time I was there I asked her if there was a possibility of that poor little vein collapsing from giving up to much of his blood and by being poked too much. As she started saying it, poor little Vince threw a hissy fit and wouldn’t give the blood up. It was crappy for me because that meant she had to poke some more. Finally, Vince “gave up his secrets” (as V would say) and co-operated with her. Then, we both thought it best we never, ever speak of collapsing veins again as it may have jinxed the whole process. Poor Vince….poor me….oh, did I mention I HATE needles???


MMMMM….Bran Buds….

So, Dr. K, as lovely of a doctor he is, is still a little….odd….he says very odd things which put me in uncontrollable fits of laughter that can put me in even more uncontrollable fits of laughter just thinking about it days later. For instance, last week we had a particularly amusing conversation about bran buds. This time, it was Dr. K, Dr….ummm….I forget her name (she’s the resident in the nephrology clinic), she can be Dr. KR for Kidney Resident. So, Dr. K asks me what I eat in the morning and I tell him Shreddies….he says “WHAT, SHREDDIES??” (in the most dramatic oh-my-gawd-you-did-WHAT voice). Now, I didn’t think there was anything wrong with Shreddies. It’s not like I was eating honey combs or cocoa puffs or anything. Anyways, apparently Shreddies are bad. So, he says “why not have a bowl of bran”. Dr KR starts laughing. We then get in to “bran buds” and she’s giggling the entire time. Dr. K turns to her with venom “WHAT ARE YOU LAUGHING AT”. Of course, I then start laughing, as does Mom, because he’s getting so worked up over the flippin bran buds. Anyways, we quickly change the subject to what I eat for lunch. Odd, odd, man…..nice, AWESOME doctor…..but a little odd….


Take the good with the bad….


Other than lectures on bran buds, we got some nice news that day. The news was regarding my ANCA. As I had mentioned before, ANCA is the “Wegeners marker. In a “normal person” it’s supposed to be between 1 and 5 whereas mine was greater than 100. Well, I’m happy to say, my ANCA has gone down to 31!! Yup. That’s quite a bit! So, obviously this “lovely” concoction of pills must be doing something for me…….I know it’s a little ways to go before I get to “between 1 and 5” but, it’s a start, a BIG start. And, it’s pretty exciting. Mom and I went to Mustang Sallys for a lovely wrap to celebrate, after that visit! It was a celebratory ANCA lunch. Funny thing, up until a couple of months ago I hadn’t a clue what “ANCA” was, for all I knew it was an acronym for some sort of organization……and now, we’re having lunches in its honor. It’s odd how life can change so much in a few short months. I’m not sure if it was in honor of ANCA or not, but, Dr. K took my dosage of prednisone down 15mg too. Maybe he thought he should do something nice for ANCA as well.


Unfortunately, we got a little ugly news that day too. The prednisone is driving my blood pressure up and I’ve been having chest pains. One chest pain was so bad that I thought for sure I was going to pass out. I had just gotten off the elliptical at the gym when it started. I felt it in my chest and out my back. My neck started to get stiff and I thought I was going to throw up. I thought for sure I was having some type of coronary. It was that intense that as I was driving down the road, I was actually contemplating making a left hand turn toward the hospital, instead of going straight and heading home. Anyways, I told Dr. K about this and now I have Dr. H. Yup, another new doctor! He’s a cardiologist. Another buddy to add to the team. Dr. K just didn’t send me to a cardiologist; he also gave me another pill to add to the cocktail. I’m now on Zestoretic. It is a blood pressure/diuretic pill. Apparently it keeps my blood pressure down by stopping the enzyme that makes one retain fluid. It also filters out the kidneys by making you pee all the time. So, if I didn’t pee all the time already, I’m certainly doing it now…..HOLY DINAH, I’m sure the people that sit next to the bathroom think I’m absolutely nuts because I’m always in there. Anyways, the pills are supposed to do good things for me, so, I’m going to take their word for it. I’m kinda excited about this whole “stopping the enzyme that makes you retain fluid” thing because hopefully it’ll take some of the fluid I have already retained with it. AND QUICK! If my moonface gets any bigger, it’s going to take over the world……..So, I now await the cardiologist visit. I was supposed to go on Wednesday past but, the appointment was cancelled.

Prednisone…..the oxymoron

It’s a wonderfully horrible drug. Yup. The little frigger completely contradicts itself. It’s wonderful because it’s making me feel so nice and lovely and wonderful all the time, but, it’s horrible because it’s making me feel not-so-nice and yucky all the time. Make sense? Nah, I didn’t think so. I’m grateful that pred has gone in there and taken (or is trying to) all the inflammation out of my poor little blood vessels. I’m also grateful that I’m now able to walk around normally, get up off a chair without taking 5 minutes to “work myself up to it” and turn door handles without screaming out in pain. I’m just not so grateful as to what it’s doing to me. The side effects are just not nice. Especially not nice for a shy, self conscious bride-to-be. I don’t mean to get in to another vent about side effects, but, I HATE THEM. As I said, my Moonface is out and shining, as it the “Moondust” which I had mentioned before. It’s no longer on one side of my face anymore; it’s all down the other side too, and along my jawline. It’s gross, gross, gross. I’m also getting this disgusting “pocket” of fluid on the back of my neck. It’s what they call “buffalo hump”. Greeeeeeeat…..so, now I’m a bison? Oh pred, what you do to me…… I’m actually having quite a hard time dealing with all this. I talk to Mom about it, and I always feel better after our conversations, but, I still feel horrible. And ugly. And horrible. I just feel like everyone is staring at me all the time. I also feel the need to explain to everyone “I’m on prednisone” so, that they know I have an excuse as to why I look like Quasimodo. However, with all stuff said in my little “pity party”, last visit he DID take me down another 20mg of pred. So, I’m now down to 40 mg when initially I was at 80 mg. So, MOONFACE, BREAKOUTS AND BUFFALO HUMP BE GONE!!

Till next time……….

So, I think that’s pretty much it. Nothing else has happened (fortunately). Like I said, I’m basically just dealing with all the side effects of the meds now. I can’t wait until I’m completely finished my treatment and in remission but, I’m taking it day by day.

A plethora of side effects

Wow, it’s my 1 month anniversary! Yippeeee……well, maybe I shouldn’t be so jubilant, but, then again, maybe I should. It’s my 1 month anniversary of getting diagnosed with Wegener’s. On one hand, yes, its an anniversary of something not so pleasant, but, on the other hand, it’s the anniversary of the day they could actually start treating what I have and allow me to feel better. It’s quite hard to believe that this whole ordeal started a month ago. I guess everything has been so hectic lately (with the wedding planning and all) I’ve just been going about my normal routine. That’s kind of why I haven’t been blogging. So, what have I been up to since I’ve last updated? Well, let me tell ya…..

Dr. K’s weekly visits……

So, I’ve been seeing my nephrologist weekly. For my second appointment he was still handing out restrictions. This time, he looked at my feet, gave me a “motherly tsk tsk tsk” and told me I’m not to wear sandals anymore. He wants me to wear closed toed shoes complete with socks……WHAT?? I can’t do that. I just can’t tell my massive sandal collection that their services are no longer required! Those sandals came from years and years of trips to shoe stores! Some have even traveled from afar as my parents usually bring me back sandals each time they go on a trip (which is twice a year). So, you can imagine my dilemma! I cannot have closed-toed-socked-feet for the rest of the summer!! So…..I don’t. I know it’s bad, but, I don’t do it. I just can’t break the hearts of my poor little sandals in all colours of the rainbow. I also can’t do pretty summer dresses or summer capris with a pair Nikeys. But, that’s okay. I just have to be very, very, very careful. Of course, if I’m traipsing through the woods or something I’ll need to wear some sneakers, but, for everyday back and forth to work or out on the town is fine (or so I’m saying). I just need to remember that when I DO go in to see Dr. K, I need to make sure I’m wearing the appropriate footwear because he WILL tell me off. I guess his reasons make sense as to why I need to have my feet protected. It’s because I’m on such a HIGH dose of steroids and because of the chemotherapy. The first thing, I’m more susceptible to bruises and cuts because prednisone makes your skin very…..ummmmm….delicate. Your skin gets very thin and you can bruise just by applying pressure. It really sucks. REALLY. I have all sorts of little marks on my arms and legs and it’s from my dog jumping up on me! Then, there’s the other side of it…..the chemo. Because my immune system is so suppressed, when I do get a cut/bruise/scrape etc. it takes forever to heal. However, not only does the chemo do that, the prednisone does the same thing!!! GREEEAAAAT! So, I guess the whole sandal thing is a precaution…..either that or Dr. K is insanely jealous of my sandal collection, thus he’s not allowing me to wear them!! Yup, that’s definitely it!

I think that’s it for restrictions. Other than the fact that he wants me to move out of my house. See, the house is very, very old and hasn’t been touched since they laid the last piece of siding 70 years ago. There’s mould and mildew and rot and even the scattered mouse. Lovely, eh? So, when Dr. K caught wind of this, he decided I shouldn’t be around that crap. Though nobody should be around that stuff all the time, I especially shouldn’t be around it because of my immune system and lungs. We don’t want anything to make me sicker! So, after the wedding (because there’s NO WAY I’m moving BEFORE the wedding) we’re going to be moving. It just has to be before it starts to get cold again. It’s okay for the summer because I can keep the windows open and it’s not so bad. But, when it gets cold, look out. Not only do we need to bar up the windows, the house is very, very, very cold. It’s drafty and needs new windows. It didn’t matter how high the heat was up, we never could get the place warm. So, we pretty much ended up spending a fortune (like sometimes over $400) in our power bill, basically to heat the neighborhood…..wonderful. Then, there’s nothing that can be done with it either because our landlord will be tearing the house down (yup, it’s THAT bad) next summer, so, he doesn’t want to put any money in to it….which does make sense. Ah well….so, now we’re house hunting. I’m not completely focused on that though, because I’m getting married in 38 days and still have soooooo much left to do!! So, the house business is an after wedding/honeymoon thing!

I think that’s all that came out of my previous visits. They’ve been checking my blood/urine/weight/vitals every week just to make sure everything is okay. My levels haven’t changed and I’m just waiting on the results from my ANCA test. As I’ve said before, ANCA is the test that is a Wegener’s marker. Your ANCA is supposed to be between 1 and 5, mine was greater than 100….ack. So, I’m waiting to hear back from my lovely nurse Betty who is going to tell me how my ANCA made out. So, other than the appointments, how have I been feeling? Well, I’ve been dealing with side effects…..they’re not nice.


When the Moon Hits Your Eye………

One of the biggest side effects of prednisone and I got it. Great. It’s called “moonface”. Your face literally blows up like a blowfish. I can understand why they call it moonface because I’m pretty sure it’s that big I could stand up on top of a hill and all the sunlight can be reflected off my massive face to light up the city. Seriously. Now, for some skinny minny it’s okay, but, when you’ve already got extra weight on, you don’t want anymore. The thing is, it’s not actually fat. It’s fluid. So, my face is like a water balloon. I’m just stocking up on fluid. This has been one of the hardest side effects for me to deal with though. It’s so depressing. Especially with the upcoming wedding and all. It makes me so sad to know that I’m going to be having all these pictures taken that day and I’m going to look back on it and all I’m going to see is Mac Tonight (you know, that big moon head from McDonalds). It really looks awful. Then, people are looking at me and I’m sure they’re thinking “oh my goodness, her face is HUUUUGE, she needs to go on a diet”. So, having to deal with this has also given me another perspective on things. I can’t help it! It’s the drugs! I’m not eating piles and piles of McDonalds each day, in fact, I haven’t had fast food in AGES! I’m actually eating better than I have ever eaten in my entire life! So, just for me, next time you see someone and they look a little off (extra weight, abnormalities etc.) try and think, maybe they can’t help it and have a little sympathy! Okay, I’m off my little mini-rant. It’s just bothers me, that’s all. I’m quite upset about the whole moonface thing and of course, all I can think about is the wedding….and everyone looking at me…..and all the pictures….the pictures…..GAH. But, as I’ve said before, it could be worse and whaddayado??

Where there’s moonface, there’s moon dust…….

It’s too bad by moon dust I don’t mean pretty little sprinkles of sparkliness illuminating my face…..I mean, breakout. Symptom #2 that I’ve been experiencing. From the top of my eyebrow to my cheek is broken out. It’s not like big ugly pimples, it’s just little bumps. It looks like a rash and makes me feel like an ogre. My V says there are lots of lovely things we can do with make-up, but, I don’t want to be broken out. It’s horrible. I’ve never been one to get a lot of pimples and I don’t want to start now at 25 years old! Let’s just hope they can get me off this high dose soon. If I’m getting these symptoms, I’m afraid for the bigger irreversible symptoms. With steroids you can run in to things like osteoporosis and hip replacements. So, let’s keep praying that they can wean me down soon, without making me sick again……


Is it Naptime Yet?

The third symptom I’m experiencing, but, not from the pred…..fatigue. Absolutely horrendous knock me out fatigue. This symptom is coming from the cyclophosphamide, or the chemo drug. I’ve been super duper tired. Most people get the “mid afternoon slump” well; I get the 10:00 in the morning slump. I start feeling tired mid morning and by afternoon, I’m ready to curl up under my desk and have a nap. I’m actually very grateful that I have a big window because if I didn’t, I think the combination of the florescent lights and looking at the walls would make it so much harder. At least I have natural light shining in (well, when we can get passed this fog). It’s just very difficult trying to do your work when you’re sooooooo tired. I literally wish I had a cot under my desk to have a little mid afternoon siesta. Then, my nighttimes are shot. I get home and want to go to bed right away. I can’t give in to it though, because if I do nap when I get home, I won’t sleep in the nighttime, so, it’s a no win situation. I just have to deal with this whole tiredness bit…….


A concoction of symptoms……

So, other than the aforementioned symptoms, the only other ones I’m getting are very minor. I recently starting getting the “shakes”. I can be standing up cutting something up and my hands will be going in overdrive. It’s like being on a sugar high or something. It’s weird. I mentioned it to the nephrologist on Monday and he took me down 5mg of pred. So far I haven’t felt any weird side effects from my dosage being lowered and I haven’t had any of my ugly illness symptoms come back. So, no joint pain, no coughing up blood, nothing……

Another small side effect is feeling slightly nauseated. Since starting the cyclo, I’ve been feeling ickier than usual. It’s silly, but, it’s the only way I can describe it. Just icky. It’s like, I can be going along fine, then, all of a sudden, I just feel like I’m going to throw up. Not exactly a nice feeling. I feel it in the morning, but, by the time I have my cereal, take my meds, come to work, start working, I generally feel a little better. Though, this is not always the case. Sometimes the savage lingers!

Last but not least, the only other side effect I seem to getting is the mood swings. I can turn from sweetie-mcsweet to mega-“beotch” in 2 seconds flat. It doesn’t take a whole lot to set me off either. It could be something as small as dropping a spoon on the floor. It’s crazy. Jekyll and Hyde I tell ya. But, I really can’t help it, I really can’t. I don’t know why it happens. It just does! I am glad to know it’s a side effect of the pred though, and not a personality trait. I consider myself a pretty nice person. A little shy, but, I’ll do anything for ya. So, if you catch me in one of those moments when my eyes are blazing red, I have little horns growing out of my head and my nostrils are flaring, I apologize. Please don’t think any less of me for it, because I’m really not that bad.

Other than being sleepy and sick sometimes, I’m good.

Dealing with it all…….

So, how am I holding up? I’m doing pretty well. I have a wonderful support team of family and friends. I still get phone calls and e-mails all the time from concerned people wondering how I am. Those phone calls, emails and support are what is going to get me through all this. You wouldn’t believe how much I appreciate it to know that there are so many people out there that love me and care for me so much. It’s especially reassuring because there are people around me that really don’t understand what going on with me. There has to be people there that are just thinking this is just a flu and I’m getting too worked up about it. People have made comments to me about it. They may not realize that when they’re making comments that it hurts, but, nonetheless, they comment. Like, kind of “making fun” of my situation. Talking about me “Being around crowds” in a mocking way……or what I can and can’t eat. It hurts. However, I just need to keep in mind all the support I DO have. People like that don’t matter; it’s the ones that love me that do!

So, I’m going to take my sprinkled moonface and go do some more wedding stuff now. I’ll update again soon! For now it’s pretty much wedding, wedding, wedding……it’s a very hectic/busy/crazy time, but, it’s an exciting hectic/busy/crazy!!

The story behind bubble girl...and a recap of my first appointment

Yes, the girl in the bubble……you want to know why I’m referring to myself as the girl in the bubble? Sure, I’ll tell you.

I had my first “official” appointment with the specialist that is going to be following me and my disease on Monday past. He is a nephrologist….or, a “kidney doctor”. The reason he is following me is because the kidneys are a place that Mr. Wegener likes to hang out, reeking havoc as he goes. Once he pokes around your kidneys, he does all sorts of nasty stuff which can lead to things like dialysis and even kidney transplants. Luckily for me, my kidneys are functioning quite normally. Which is amazing because I’ve been mean to my kidneys over the years. Anyone who knows me knows that I pee a lot. That’s the bad thing; the bad thing is the fact that I hold it. I hold for hours and hours and hours. Bad habit, I know. So, I have to be nicer to the little guys. Especially since they were just poked and prodded with a big needle.

So, I visit the dialysis unit of one of my local hospitals and immediately am greeted with people who look quite, quite sick. My heart really goes out to these people. It also makes me a little afraid for me. It’s scary. So, I check in with the receptionist who tells me I’m supposed to get blood work done. Yippee, more needles!! Fortunately for me, the blood lab is open for another 5 minutes, thus, I got there just in time. Great. She also asks for my “pee bottle”. I was supposed to do“24 hour urine”, which is basically pee in a big Tupperware looking bottle for 24 hours straight. Well, maybe not straight, but, every time you have to pee. So, I explain to her that my bridal shower was the day before and as lovely an accessory the big orange pee bottle is, it really didn’t go with my outfit. Though, I suppose I could have changed my sandals to match or something. So, she outfits me with ANOTHER pee bottle and tells me to bring it back when I come to see him again on Monday. I go off to get prodded by needles and come back down to the waiting room to “patiently” await my turn to see the doctor. The receptionist informs us at this point that there are 7 people ahead of us, even though it was past the time I was supposed to be in my appointment.

Finally, I get the call. “Miss Insert-Last-Name-Here”, come with me. He gives me a lovely blue “Johnny coat” and asks me to suit up and lie down. Hey! I didn’t sign up for any Johnny coat….I think the outfit I have on is just fine and dandy, thank-you very much. So, with some reassurance from my Mom, I put the stupid thing on (I HATE THOSE THINGS, HATE THEM). Finally, the moment I was anticipating happens. Dr. Kidney-man comes in to see me (let’s call him Dr. K). Well, I tell ya. It was an experience.

Germ free.....

The first thing he asks me about is the pee bottle. I quickly dodge the subject with an “I’ll do it when I come back” kinda statement. Then, he starts talking about Wegener and the drugs, and this is when I become “Girl in the Bubble”. Because my immune system is being suppressed, the good stuff it would normally do for me (like fight infection) goes away. So, if someone has a cold, I can’t be around them. If someone has the chicken pox, I can’t be around them. If someone has the…..well, you get the point. He told me to be careful in crowded areas. If I notice people coughing and stuff, stay clear of them. I also need to avoid large crowds if possible. “Hello Hermit”. Hand in hand with that is the washing (pardon the pun). He told me not to touch my eyes, touch my mouth or pick my nose without washing my hands first. I can’t eat without washing my hands (which is a given anyways) and I cannot forget to wash my hands when leaving the bathroom (another given). I’ve stocked up on purell for those times when I just can’t get to the sink. I also think I need to stock up on some moisturizer because the soap and purell overload is starting to dry my hands out. So, keep hands clean and germ free. CHECK. Stay away from sick people and big crowds. CHECK. Now, on to the food business.

My food restrictions

As I previously mentioned, Wegener likes to hang out in the kidneys, thus they need to be monitored regularly. So, that means NO SALT. What the? I don’t eat a whole lot of salt anyways, but, I do like to taste my food. So, he lists off the things I can’t eat. It included everything from processed meats, to ANYTHING in can, right down to ketchup. I pretty much have to eat all fresh food. If it is fresh, I can eat it. So, lots of chicken, fish, vegetables and fruits. Which is OK, but, unfortunately they won’t have any taste. This leaves me in quite the bind. I don’t even know what to eat anymore! I’ve been eating salad everyday for lunch, but, I don’t even know if I’m allowed to be eating the dressing. I don’t know what amount of sodium is “high” and I don’t know how to read the label properly. Luckily for me, my family doctor is sending me to a dietitian. Hopefully he/she can figure me out. I guess the best thing about the food is the fact that I’ll be much healthier. Which is a good thing, considering……

Another food restriction I have is SUGAR. The reason for this is because prednisone drives up your sugars, leading in to all sorts of nasty things, like diabetes. Diabetes is something I DONT want to have on top of all of this. So, I can have NO SUGAR. NONE. Zilch. Like the salt, I'm not really one for a lot of sugar either, but, I do enjoy me the scattered peice of chocolate eruption cake. One thing I AM allowed to have, and have a lot of it, is water.

More H2O?

Water, water, water. The next thing I know, I’ll be drowning myself. The reason I’m supposed to drink so much water is because of the cyclophosphamide and septra. Cyclo can cause bladder cancer, thus, we don’t want anything to irritate the bladder lining. So, I need to drink litres upon litres of it and flush it all out every hour (even if I don’t have to go). As a side note, I never did understand that whole “go even if you don’t have to go” thing. If I don’t have to go, I’m not going to be able to go. So, what’s the point? I’ll just be sitting there straining and praying, hoping to pee. That’s it, I guess. So, V and I went on a Wal-Mart run and picked me up a HUGE water bottle. So, I need to fill it and drink its contents many, many, many times throughout the day. I drank a lot before I got sick, so, it’s not so bad, but, I have to work on drinking EVEN MORE!! GAH. So, I’m basically going to be peeing and drinking all day, but, I think I’ve expanded on this topic enough. For some, it’s probably waaaaaay too much information.

The rest of the appointment....

Other than the restrictions, my appointment basically didn’t given me much new information. He stressed that it’s a very, very serious illness and it’s not something to be taken lightly. He really wants me to follow all the restrictions he gave me so that I can be extra super nice to my kidneys and immune system. He also threw in the “D” word, which threw ME through a little loop. His statement was “The ultimate thing we’re trying to prevent here is DEATH”. Now, how scary is that? Though, I guess it makes sense. If you have a bad flu, they do what they can to prevent “Death”; however, it’s in much less drastic measures. Or, they don’t want you to die from the measles? I think the thing that made it so frightening for me is the fact that you actually CAN die from Wegener’s. Though, you CAN die from the flu. But, Wegener’s is just more scary and unknown. I must admit, the doctor really knows his stuff. It’s hard to trust a new doctor right away, but, I think *I hope* he knows what he’s talking about. I get to meet with my respirologist and ENT soon too. So, I have a whole team of physicians caring for me….WOO-HOO!!

So, I think I pretty much covered everything that went on in the appointment. SO, that’s why I am the bubble girl. I am the water logged, veggie eating frightened to death girl in the bubble. But, do you know what scares me the most? The fact that I left my big orange pee bottle on the Dr. K’s desk and he’s going to be mad at me on Monday.

Wegener's...what in the heck is it?

So, about that Wegener’s….I guess I should probably explain what the disease is, seeing how it’s what my entire blog is about. Before I go on, remember, I am NOT a medical professional; I am simply just another Wegener’s patient. My attempt is not to give anyone medical advice, but, maybe just some more information and personal experience. It’s so easy to look through the internet when you’re diagnosed with a new disease and come back with a whole bunch “information” that probably makes you more confused than you were in the beginning. It’s also easy to come back very frightened! The thing we need to remember is Wegener’s is an elusive little fella that shows up many different ways, so, you could have all of the symptoms, or some of the symptoms…..the only true way to know is to speak to your doctor and get tested. As it’s so rare, people need to be more informed. We need to find a cure! Anyways, I digress…….

What IS Wegener’s?

The very first time Wegener’s surfaced was in 1931 and was “founded” by a medical student named “Heinz Klinger”. A couple of years later a German pathologist came along and actually recognized the disease as a particular form of vasculitis. So, guess what the German guys name was? Yup, Wegener…..Friedrich Wegener. I betchya Klinger was awful P-O’d that the disease wasn’t named after him!!

Wegener’s Granulomatosis (WG) is a VERY rare type of vasculitis which effects approximately 1 in 300, 000 people (gee, I must be so lucky!) (http://www.vasculitisfoundation.org/book/export/html/40). Vasculitis is an inflammation of your little arteries and veins. The arteries and veins that WG likes to inflame are the ones which give blood to the lungs, sinuses and kidneys. Thus, why there are so many very odd symptoms which makes it very hard to diagnose.

Symptoms?

The classical symptoms of Wegener’s include, fatigue, weight loss (how come I couldn’t get that one?), fever, shortness of breath, coughing up bloody mucous, joint pain, sinusitis, ulcers in the nose, and nosebleeds. Other parts of your body can be affected as well; your eyes (mine turned a very bright shade of red and was easily confused with “pink eye”), your middle ear (for me, I had some serious ear infections, one of which lasted almost a month making it very difficult to hear, it kind of felt like “swimmer’s ear”) and the skin (Again, mine came out in a rash).

So, that’s why for me, the doctor’s just kept thinking I had chest infections or sinus infections or even just the flu. It was only until we really started looking in to the joint pain that we realized there was something bigger there. So, if you DO have any or all of these symptoms, don’t freak out just yet. It could very well be, “just the flu”. But, I’d get it checked out by your doctor, just in case!

How does the doctor know you have Wegener’s?

Well, like I said, it’s so hard to diagnose so, the doctor definitely can’t tell just by looking at you. More than likely, if your doctor thinks there’s something going on, he/she’ll order a bunch of blood work, urine tests and perhaps a chest X-Ray (depending if you have chest symptoms) to start you off. In people with Wegener’s there is normally blood and protein in the urine (it’s there, but can only be seen under a microscope). Luckily for me, I only had a little bit of blood and a little bit of protein.

For the X-Rays, they look for abnormalities that come from the inflammation. In my case, they found little nodes on my lungs, which were confused with pneumonia. I’m not a radiologist, but, I’m assuming everything on an X-Ray is all fuzzed together anyways, so, it’s probably hard to determine what exactly is floating around in there, but, then again I’m not a radiologist.

In blood tests they check a whole bunch of stuff. They look for any inflammation, which can be found in your sedimentation rate (ESR). My sed rate was pretty high and c-reactive protein. The actual “Wegener’s marker” however, is the ANCA test. This is the antineutrophil cytoplasmic antibody……fewf; say that 3 times fast……When your disease is active, this “ANCA” is elevated. It’s supposed to be between 0-5 but, mine was greater than 100….woo-hoo! I’m above average!!

Ultimately, the final diagnosis needs to be confirmed with a tissue sample….so; they can either do a kidney, lung or sinus biopsy. Yuck, yuck and yuck. As I mentioned before, I had to get the kidney biopsy. So, they stuck a few needles in to my skin to freeze it, then, they put a “biopsy gun” in my back. I told them not to use the word “biopsy gun” around me, and they were pretty good about that. I also asked them not to show me the needle, you know, given the length and thickness and such…..So, it wasn’t the most excruciating thing I’ve ever gone through, though it wasn’t the most pleasant either. I tell yah though, I was VERY happy when he said “we got two good samples! We’re done”…..hallelujah! The worst thing for me was the fact of the “extra fluff”. If you have any extra weight on at all, it makes a kidney biopsy harder to do, I guess because they have to go through more stuff to get to the organ. Anyways, in the biopsy they’re looking for vasculitis and little granulomas, or nodular inflammation….or, in layman’s terms little bumps on the tissue.

Now, how do I get rid of it all?

WG is quite serious and sometimes can be fatal. As my doctor said “the ultimate thing we’re trying to prevent is DEATH”….just like that, he threw in the D word and scared the beejeepers out of me. The point of the treatment is to suppress the immune system and stop the inflammation.

Currently I’m taking a very high dose of steroid called “prednisone”. Hand-in-hand with the prednisone, I need to take calcium and vitamin D (because of what steroids do to the bones). I am also taking something called septra; this apparently helps prevent a relapse. Finally, the scary drug…..the “chemotherapy drug”…..Cyclophosphamide or Cytoxan. The cyclophosphamide has some serious side effects thus; we needed to do some serious thinking about when to start the drug. The biggest side effect of our concern was the infertility thing. They told me I may not be able to have babies when I’m finished my treatment. This spun us in a brand new direction. We had to meet with a fertility specialist and start thinking about the options. However, the only option which existed was the “harvesting of my eggs”. This option is not always guaranteed and it’s quite, QUITE expensive. It would cost approximately 15, 000 for us to get it done. It involves taking a whack of drugs to make a whack of eggs, then; you need to fly to Calgary, Alberta. Then, they take a huge needle, stick it up in to your lady parts and remove your eggs. After that, they take your spouse’s sperm, fertilize your eggs, put it in a tube, pack it in a Ziploc and put it in the freezer until you’re ready to have your baby. So, this is not actually “harvesting your eggs” it’s more so, harvesting embryos. But, the egg harvesting option exists as well. Or then, there’s the option my best friend, V suggested , it involved a turkey baster and some Rubbermaid containers……though I’m thinking that’s probably NOT such a good idea……Anyways, that’s too much information for a newly diagnosed WG patient. Back to the cyclophosphamide. You need to drink lots and lots and lots and lots of water, stay away from people with colds/infection, be constantly monitored and so on and so forth. It CAN make your hair fall out and it CAN make you sick. However, they DO have some nice drugs to make you feel not-so-sick and there are some lovely wigs, hairpieces and hats out there for you. So, it’s not the end of the world. The best thing is, you’re getting the treatment you need.

So, how do you get rid of it? Unfortunately you don’t. It’s something you’re going to have forever (until they find a cure). With that being said, they have many wonderful treatments which can put it in to remission and make it stay there for a long, long, looooooooong time. So, they key is to have a positive attitude. I have a super “support team” and I know with their help I’m going to be beat living heck out of this thing. While there’s no cure yet, there’s hope. So, I hope I can do my part in helping find that…..even if it IS just a little tiny, tiny part.

**References for this blog, because it certainly didn’t come off the top of my head!

http://www.vasculitisfoundation.org/book/export/html/40
http://www.medicinenet.com/wegeners_granulomatosis
http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833
http://vasculitis.med.jhu.edu/typesof/wegeners.html

At the beginning of the road

Hi everyone…..my name is LeighAnne and I have Wegener's Granulomatosis. There, it’s out. Even though I don’t even know how to spell it yet, I’ve decided to start a blog and maybe everything I am going through will help someone else in the future. I’m not really sure where this disease is going to lead me yet, but, I have hope, love, support and wonderful doctors and treatments.

Let’s start at the beginning……..

For quite a long time (maybe 5 years) it seemed like I was ALWAYS sick. If it wasn’t a chest cold, it was a sinus infection or headache. So, what did I do? I took advils and antibiotics and made many trips to my doctor and many calls to work and school saying that I was sick. By the end of it all, I’m sure at least ¾ of everyone I spoke to thought I was a hypochondriac (you know, someone who thinks they have ailments when it’s all in their head). Well, at least I’m not a hypochondriac, though; I wish that was the case and not this stupid, stupid disease.

Anyways, in 2004/2005 I started going through a very stressful period in my life. I was sick all the time and trying to attend school. I was doing a very demanding program in College and couldn’t focus on it. Though I DID graduate, I’m certain I could have done much better. I’ve always been an ‘A’ student, but, unfortunately couldn’t pull it off in College. Anyways, the year before I graduated I went through a situation which wasn’t so nice. No matter who was to blame, it was quite stressful on all involved. This situation caused me to move out of my apartment. Now, why am I telling you this? Well, because that’s when the most noticeable symptoms started.

The “Traveling Pain”

My joint pain, which a friend of mine and I later dubbed “traveling pain” started in the summer of 2005. I was sitting at the beach with my two nieces when I started to feel excruciating pain in my ankle. It was almost as if I had fallen down and sprained or broken it (Yes, it was THAT bad). I couldn’t even get up from the spot I was sitting. So, I rubbed and rubbed and rubbed it and finally hobbled over to the car to drive home….luckily it wasn’t my “driving foot”. Anyways, the pain persisted throughout the night and I even started to get a fever. I didn’t think anything of it, but, figured if it still felt like that the next day I’d go to the doctor. Well, I woke up the next morning and the mystery pain was gone. Wonderful! Weird, but, I was glad. Until a couple of days when the same sort of pain returned, however, this time it was in my wrist. The pain was so weird and intense that it was like someone had snapped all the tendons off in my wrist and I couldn’t even move my fingers. This time I did go to the doctor, he told me I had a tendonitis. But, like the ankle, the pain went away in a day or so. I was cured once more. That’s when it started to get really odd. The traveling pain seemed to travel more frequently and to more parts of my body, almost always affecting my joints. I can remember sitting at my fiancé’s (B) cousin’s wedding and wanting to get up to dance but, my knees and ankles were in so much pain I couldn’t move. I would just grin and bear it. I had bought a pair of really pretty shoes and a really pretty skirt to wear, but, I remember going to B’s Mom’s house to change in to something longer and more comfortable because my ankles and knees had swollen in to large melons. That was when I said enough is enough.

I went back to the doctor and he did a bunch of tests. He thought I had rheumatoid arthritis, but, I didn’t have the RF factor in my blood at the time, so, he kind of ruled that out. He sent me to an internal medicine specialist, but, by the time I got my appointment (winter of the following year) my symptoms had gone away. He basically felt up my legs and stuff and said there was nothing there. I think we all came to the diagnosis that it was a virus. I was done with it, and it was a good thing to. Little did I know that the constant sinus headaches and chest infections had all that much more to do with the disease. I was at my work term at a very prestigious local company and they were very understanding about the amount of time I had missed, but, missing time was something I hated doing. I even missed the last day of work before Christmas because I had one of these horrible chest infections. Then, the summer of 2006, I started having more chest infections and sinus pain. I was working with a big company on a 6 month contract and had to call in sick quite a few times. I didn’t know why I couldn’t feel better! Anyways, let’s fast forward to when it all came out in the wash.

Traveling Pain Returns

In November of 2006, my traveling pain came back. This time it was like it was all out of whack. I’d be affected at more than one joint at a time, and the pain was much more severe. I had infection after infection after infection. I had recently started a new job and started missing time from there as well. Though it was only a part time job, I still had to inconvenience them with numerous appointments, sickness etc. etc. Little did I know my immune system was just preparing for an eruption. I saw SO many specialists and had SOOOO many tests. However, March 26th was the day it all went helter skelter.

It started with a very bad chest infection. I know the date because it was also the first day of my new job at a big, wonderful company. It was so bad that I actually had to go home on my very first day because I couldn’t breathe and thought I was going to pass out. So, I went to my family doctor that night who gave me some biaxin (an antibiotic) told me I had a bit of something on my chest and said I should be fine to return to work in a couple of days. However, it didn’t get better. While I kind of “felt better” the chest congestion was still there…and then the bleeding started. Every time I coughed, it would be a wonderful mixture of mucous and blood (sorry so graphic). This persisted for a couple of days before it started to turn in to more blood and less mucous. Finally, it became just blood. I was coughing up blood for over a month when I finally decided to go to the doctor. I had missed another day at work, and had to see the only available doctor on that night. Today, I’m thanking my lucky stars that I did. This is when I first met Dr. H, the one I now think of as my angel doctor. I complained about the blood and also mentioned my traveling pain. I kind of brought it up to her in a round of about sort of way. Pretty much starting it off with…..”Okay, you’re probably going to think this sounds weird and think it’s all in my head BUT……” Then I started on with my traveling pain story. Instead of brushing me off, she showed nothing but concern. She ordered a blood test right away and also sent me in for a chest X-Ray. She also told me it was very important I get the tests done, which most doctors don’t do.

The Call that changed everything

On May 15th, I got a call at home from my doctor. She told me my chest X-Ray came back and it turned out there was pneumonia on my chest. She gave me some anti-biotic to pick up right away and made a follow up appointment to see her the following week. Then, I got another phone call from the doctor. She was so concerned about me that she phoned a respirologist (lung doctor) to get his opinion on my ‘pneumonia’. This is when she found out my blood tests had also come back and my RF was up, my ESR (sed rate) was up and my white blood cell count was up and my Sinus CT Scan was back and I was blocked BLOCKED with infection. The lung doctor advised her to put me on a stronger lot of anti-biotic, gave me a bunch more blood work and said I should be feeling better on Tuesday (this was a Friday).

Well, I went back to see her on Tuesday and was NOT feeling better. You could almost say I was even feeling worse. This is when she started to get really concerned. By this time, my eye had become involved. It was red and painful. Also, I had a rash on my arm. So, let’s get this straight, I had a really bad sinus infection, I could hardly walk or even turn a door handle, I was coughing up blood, I had a very painful and red eye, my arm had a rash on it and I overall felt like crap. My doctor called another lung specialist that night (the one on call) as well as an internal medicine specialist. Both doctors told her to continue treating me with the anti-biotic. They figured the pneumonia was causing the blood. So, she let me go that night with a yaffle more prescriptions and gave me the best advice possible. “IF IT GETS WORSE OR YOU CONTINUE TO FEEL CRAPPY PLEASE GO TO THE ER”. Okay, so maybe those weren’t her exact words, but, she really put the fear in me that something else could actually be wrong and don’t hesitate to visit the hospital if I continue to feel bad. Friday I felt icky, Saturday I felt ickier, finally, Sunday morning I told B that I’ve had enough of it and needed to go to the ER. That’s when the world wind of information started.

In the ER

The doctor at the ER was lovely. He sent me for blood work and a chest X-Ray. He even went over all the blood work and tests I’ve had over the past few years. I think he knew something was up, but, wanted to do some investigating. He came in to my room at about 5:00 that evening and told me, my Mom and B that he suspected I had something called “Wegener’s Granulomatosis”. He was going to get an internal medicine person down right away to see me. As soon as he left the room I started to cry. He was so nice and thorough, but, he did say some scary things like “chemotherapy”, “admit to hospital”, and “kidney failure”. B left the hospital to pack me a bag and decided to have a look on the internet. BIG MISTAKE. A lot of sites on the internet basically say the outlook is grim, but, you need to know how to filter the information. That night, I had to get a CT scan angiogram (they had to inject dye in to my veins and it makes you feel like you’ve peed your pants). This is when they confirmed I had a lot of hemorrhaging on my lungs and these little nodes called “granulomas’”, something which is very typical of Wegener’s patients. So, throughout the week (the week from Hell), I was thrown so much information that my head started to spin. I learned about the drugs I was going to take, their side effects, the outlook for my disease. I tell you, it’s not the most pleasant thing to have to go through, but, I keep telling myself it could be so much worse.

The road to remission

So now, I’m on the road to remission. I’ve started the first batch of drugs which have completely muted my symptoms. The drug I’m taking is called prednisone. It is a steroid which can have some very serious side effects. They make me feel so good, yet they’re so bad. I love ‘em, yet I hate ‘em. Well, I can’t say I hate them yet, they’ve done nothing but good for me so, we’re going to hope it stays like that.

This past Friday I had to get a kidney biopsy. This is something I wouldn’t wish on my worst enemy. I could feel the needle going in and I could hear it piercing through the layers of fat and tissue. It’s an experience I’m trying very hard to forget. With that being said, I can say it wasn’t THAT bad. Sure, it hurt a little when the freezing needle went in, but, all in all I think it was the thought of one of my organ’s being poked and stuff coming out of it.

Yesterday, I had an appointment with my nephrologist (kidney doctor) and that’s a new blog all in it’s own. From that appointment, I got my “Girl in the Bubble” name. I’ll explain later the week.

Tomorrow I start my chemotherapy. It’s a drug called cyclophosphamide. I’m super scared about that, but, I know it’s just to make me better. While this disease is not curable, it’s treatable. So, that’s what I need to go on.

The Point of it All

So, what’s the point of this blog? Well, I pretty much would like to document whatever goes on throughout my treatment. Also, I’d love for my information to help someone else in the future who is newly diagnosed. Wegener’s is a VERY rare and VERY serious illness and unfortunately it’s one that most people haven’t even heard of (unless they’ve watched “House”).