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.