It's a hairy ordeal...gross

Well it's been a little while since I last wrote, to say things took a nose dive is greatly understated. Or at least at times it feels like the end of the world. Today is a good day though. I'm a little more positive. Seeing a friendly face at the blood lab this morning made my usually dreary weekly blood run seem less...sad to say the least. Usually I go in, sit down and wait, stare at everyone who still don't know how to read signs that say TAKE A NUMBER, but being a seasoned veteran at the blood lab does not boost my ego so I really should just let that go.

I'm not really sure where to start, maybe from today and I will go backwards? Or maybe I won't? If you're wondering what is with the title of this post I will share, although somewhat hesitantly but after talking to a good friend last night I realize I have to laugh at it or I'll just lose it. So the doctor has me on prednisone, it's a steroid, to keep my kidneys hopefully functioning, and it's a cheap drug with tons of side effects. Apart from possible osteoporosis (spelling?) there are little annoying side effects I didn't mind so much at first but are now driving me mental! Like the breaking out, no amount or high strength anything will fight this acne. They are acne on steroids and they are picky about where they want to live and they make me feel just beautiful. Then there's the mood swings, holy moly rollercoaster ride. Mine unfortunately have taken there position in the super happy to angry and dead silent roles. No tears for this girl unless the angry and silent part has gotten too frustrated and snaps.

My least favorite and most recent finding, is the hair. I wish that it would make my hair grow faster, but no, instead it has just decided to grow in places it never used to exist. And of course they are darker and more obnxious than normal hair. I'm a fuzzy mess! At first I kept telling myself to just leave it, I am sick and it's like a right of passage for getting better, but then I looked too closely at the mirror and realized I was growing a damn mustache! GASP! As someone who made a living off waxing people's body parts I never had to worry about this. So I went through the week debating if I wax it off or leave it. Then my doctor changed the course of action because of my immune system crash last month and said I'd be on prednisone longer than planned, probably another 6 months at least...by then I would have a full grown mustache and could probably participate in Movember. This is unacceptable. Plugged in the wax pot, and now I'm silky and smooth again. I know now I will have to maintain this but it was a small price to pay to feel feminine again. Sometimes outward beauty is the best we can do when our insides are being less than agreeable with us.

So last month, what a horrible time. It started off great! I worked a couple days, then I went to Hinton to visit my family and came home happy and refreshed after what had been a hard couple of months learning to deal with Wegeners and all it's fun little outbursts. The next morning I woke to mega chills...uh oh a fever! 104 degrees! This went on until Sunday (started Wednesday), so I went to the hospital and they gave me some antibiotics, but I kept getting fevers every day of 103 or 104 so Thursday they gave me better drugs and by Sunday with fevers everyday still, back to the hospital. As it turns out my Immune system decided to take a nose dive, I got pneumonia and my lungs collapsed. Then because of this my kidney function that was all the way up to 80% (when they thought it wouldn't reach 60 ever again) dropped down to 40 again. So if it wasn't one thing it was another. While in the hospital I had some severe reactions to GCSF; bone pain. I would rather give birth to a 15 pound baby then experience that again. Bone marrow is not to be taken lightly. OUCH! So finally after 7 days in the hospital again I was sent home but this time with a friend, Mr. Oxygen.

It is not fun relying on something to breathe. In fact when my lungs collapsed in the hospital (not to be too descriptive) I was in the washroom when my oxygen level dropped to 30% and I was gasping for air. Then I started coughing and as I came out of the washroom nearly dying I threw up. Luckily there was oxygen tubes in the room from when I first got there and had a smaller episode, so I quickly put it in my nose and cranked it up. It's definitely the worst feeling I have ever had, you're suffocating and yet nothing is blocking you except your own body. So Mr. O and I spent a handful of days at my house which my son quickly became aware of how it worked, and whenever he needed me he would step on the hose and cut me off or he would pull on them from another room (it was 50 feet long so it went everywhere). Little smarty pants. Then I was taken off of it and told to take things really easy. Again. Me? Take things easy? Well this time, yes, I am. Apart from a few cleaning outbursts that I had I am a sitting duck, it's just not worth the hassle.

I feel horrible missing so much work, and it's a HUGE stress for me. One because I need money to live and two because I know they are short handed and could use me. But the doctor says no and I have to listen. He thinks I rushed it last time and that's why I ended up sick again. Too much, too soon. And now after only 2 weeks out of the hospital my white blood cell count is outrageously high again which usually indicates infection...back to square one. I am trying not to focus on the numbers so much and just focus on how I feel but sometimes it's hard to do and to say I am a nervous wreck is an understatement. I never know what will happen, my knees and hips hurt SO bad all the time and my stomach has now formed an army against me which I am being sent to a specialist for...another doctor. It's like my mind and body are now two separate people, and they don't talk, or like each other. I am trying to stay positive, what else do I have? I am focusing on all the love and support I have and my beautiful boy. His birthday was during my fevers and I plan on making up for it whether he notices or not, I do.

So that's basically all for now, I'm tired all the time because I am also anemic and the iron treatments I have been getting have done nothing for me yet, but I am listening to the doctor who I have to give a huge shout out to for him and his nurse because they have been absolutely amazing, as are the staff at Rockyview. I never imagined needing so much medical attention, especially at 29 but I must say I couldn't have gotten through it without them. Some days in hospital were so emotional and hard and the nurses would sit with me and let me cry and even hold my hand when I just couldn't take another needle. They truly are amazing!

Everyday does not get better for me, there's no steady incline in my health, each day is different and anything can happen. This is life though. My plan now is not to wait for something to happen, but to enjoy the moments I don't feel sick, tired or sore. They are few and far between but they exist. You can live entire lifetimes in one moment, and it can be amazing or horrifying, but you keep moving forward regardless and keep living. Coming so close to the end a few times now in the last 3 months has really put a lot in perspective, it's hard to wrap my head around death and I'm not ready to go. I'll keep fighting even on the days I am at my worst, I am alive, I can see my son grow up, and it's so worth it. And although Wegeners is not curable and the other things that keep happening can keep happening, I'd take that over not being here. I miss my mom a lot during these hard times and am so mad that she is not here for me, and I can't imagine not being here for my son, or friends or family. Because even though everyone is treading so lightly around me to not worry me, they too have things going on and in their lives those are important too, just because I am sick doesn't mean I don't want to be there for them too. I am here, and God has decided to leave me here, so I want to make sure I make the most out of it for me and for those I love and who love me.