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!!