Sorry bout my absence

Wowee.... So all of this time that I've had a secret little hate-on for pred (yes, I know it's keeping me alive, but I still have a little love-hate relationship with it) all of the sudden I'm feeling an appreciation of the magical elixir properties of the wretched drug. As I posted earlier I had gone down to 6mg a week after my last infusion. Well, holy crap. I've been dragging my ars around like it weighs a ton (it's up there compared to old 'normal' but it's not at a ton yet.) I haven't felt so tired and lacking energy as I have the last few weeks. I had no idea how much energy pred gives you in your day (again I knew this but was avoiding thinking about it - our bodies produce about 7-10mg of the equivalent corticosteroids that pred gives you but your adrenals don't start to wake up until you're at about 5mg, so until they wake up, you're (I'm) functioning at an energy deficit - big time.) Thankfully my wonderful doc happened to be on here and noticed that and gave me a call to say 'let's try something a tad more conservative' - apparently at these lower doses 1mg is a big drop - I knew that but was trying to see if I can be one of the magic ones who pulls it off.

No way!

So now I'm doing one day 6mg one day 7mg for a month, then 6mg for a month, then 6mg one day 5mg the next for another month and I go and see my super doc so we can assess further. I find it trickier now with the pred wean than it was just dealing with taking all the sick drugs. Ughhh. But I'm moving in the right direction and keeping my mind focused on some other stuff - which for me is very therapeutic.

Now, I got a couple of stories from two more amazing fighters. Thanks you guys. I'll post them in the next day or two (unless I manage to sneak that in today). Thank you from the bottom of my heart for sharing your stories. I've received feedback that the stories on here are helping others who have been diagnosed, so we're accomplishing the overarching goal - thanks to you!

Another Weggie Story

I have just added another story to the Weggie Stories page. Thank you Ian for sharing your story with everyone. I know it's a little tough putting yourself out there, but it gets easier and even moreso when you know that perhaps it might help someone who's just starting on this journey.

I've been trying to take a few days and spend my precious spoons on myself and my family. Easier said than done but I'm trying.

I'll get back on in a day or two. Feeling like I'm in overdaft on the spoons right now.

Strange Sounds

What's that strange sound I'm hearing? Oh it's the sound of the snowball rolling down the mountain. It's the  Find the Common Thread Pajama Day snowball and I'm loving what's happening. LOVING IT! So keep it going friends. Start a little 'viral' PJ oriented activity in your neck of the woods to raise awareness for autoimmunity (nothing crazy though, when I say viral I mean through the web and word of mouth - just to be clear.) Find others hiding their pain in secret (or not so secret if you're me) not knowing how many of their friends are doing just the same. Lets all get together and stand up for the most neglected disease group out there - autoimmunity. Stand up in your PJ's on the 29th. Colour your finger red and make a fashion statement for Autoimmunity. We can post our pics and video here or on www.findthecommonthread.com - When this is bigger than any of us imagined, we can all say that we were there when it started.

RTX check, UofA talk check, remission - checking

Well, doneski. RTX done yesterday. Knocked me on my buttocks but it's done, and again I wave nostalgically to my dead B-cells with each toilet flush. I was quite emotional today and realized that after round one, two weeks ago, I was also quite emotional after the infusion. Me thinks the pred has figured out a way past my Bulgarian defence system. I was talking to Brian today about how totally lucky I've been with that aspect of the pred side effects. I've heard of some really bad horror stories about pred and emotion and mine has been kept in check throughout the last almost two years. I do feel it now though. But as I mentioned to the Medical Anthro students at the UofA tonight (they were very gracious and didn't make fun of me once - thanks you guys if you are reading this) I've been primed to notice unnatural emotional reactions just from being a goil, and having to go through PMS (a long lost and un-missed acquaintance, PMS that is).

I haven't talked to my doc and after the chickenpox freak out two weeks ago I'm hesitant to bug her again. I've decided to make a couple of decisions on my own using my experience, and the knowledge that I've acquired thus far. I WILL go down on the pred by 1mg. I was holding off until after the infusion - just in case - just in case what I don't know, but I thought I shouldn't change status quo before such a drastic treatment. I was meant to go down at the beginning of the month, so I'm going to bring it down 1mg tomorrow.  I've also decided that I'm going to stop the Imuran until I get home and get a blood test. I haven't had any here in the city (other than the v-zoster one) and even if I did, I wouldn't have access to the results (Dynalab won't give them to me) - I love living in a small town. In Jasper I can go and get the results the day after I get the blood test at the hospital. I can see where my White Blood Cell count is at and then decide if I go back on Imuran now or wait a bit. I just want to make sure I don't deplete my immune system completely because then I am very susceptible to potential invaders that I can't fight off. Last time (in March) when I had my RTX, I completely stopped taking cytoxin the day before I got the infusion and then didn't take any chemo for a few months, so I don't think that there would be any issue with stopping the Imuran for a bit to make sure I don't deplete completely.

There, I'm being a pretend doctor again. But I have my own best interest in mind and plan on living a very long and hopefully healthy and normal life, so I'm not just being foolish. I'm making educated decisions based on more information than most docs (other than rheumys) have on this disease and on knowing my body and having the experience with Wegener's.

Read some more Weggie stories

Since there is so much on my little plate (apparently that's a good trick to loose weight, eat from little plates) I just don't see being able to publish the book in the foreseeable future, I've asked some of the people who have submitted stories if I can post their stories on here. There are more at home, but I can't make Brian look through my disorganized email folder and send me all of them. He's sent me a few and I've asked the owners to post their stories and they have graciously agreed. Thanks guys. To read their stories go to the tab above that says Other Weggie Stories. We're making a difference, one little 'ouch' at a time.

Well I'm stuck in the city

Found out that I don't have any v-zoster antibodies. Blah. So I'm in the city, separated from my family waiting to see if Hana gets anything and if I get anything. If I do, then I have to go on an antiviral and see where that takes me. I've been checking for spots every day and so far so good. I'm also feeling that with each passing day I'm a little bit more out of the woods. 28th will be the full 21 day gestation period, so that will be the magic date. I still go on the 23rd for RTX number two and on the 24th to the U of A for a guest blah blah, so things overall are moving smoothly aside from this one little pox speed bump. Thanks friends for all of your support.

Peace y'all.

Don't Panic

If you were an intergalactic traveller and had the Hitchhikers Guide to the Galaxy in your pocket for advice, one thing you would know (because it's written in big, bold letters on the front cover) is DON'T PANIC. Well, I apparently lost my copy of the Hitchhikers Guide because I panicked last night. Big time panic. I'm calmer now, but man did I ever get worked up. I found out that Hana's friend who she hung out with on Saturday got spots on Sunday and was diagnosed with chickenpox on Monday. I also saw her friend on Saturday and got all of my B cells blown to smithereens on Monday. So I panicked.

Why did I panic? Because there are two things I've been afraid of contracting since being immune suppressed - pneumonia and chickenpox. AND chickenpox in an immune-suppressed folk like us Weggies, can lead to pneumonia (and encephalitis - ughhh). Again, I panicked cuz those things can kill us. I know, I know, it sounds so melodramatic, but I've been really good and calm about the whole process so I'm allowed to have a freak out once during the disease process. This was my freak out. When your B cells are gone, your immune system goes back to being where it was when you're a newborn, not much memory of what you've had or have been immunized against. I know that there are still some B cells that aren't killed so I'm hoping I have a few of those that can pull me through this, probably overblown, crisis.

I spoke with my doc and she ordered a blood test to see if I have antibodies for the virus and if I don't then we'll treat with blood product to protect me (IgG - I think). We'll hopefully know by Friday where I'm at with all of this and where we go from here. We will separate me and Hana for a bit just to be sure - which is a total bummer. Total! But gotta do what we gotta do to make sure we're around each other for a long time in the long run. I hope this doesn't mess up my RTX treatment ( I have a second round in two weeks time) as that will be a huge waste of time, money (the treatment is worth $10,000) and health. 

I panicked my friends too on Facebook, so I feel like a bit of  a putz. There's nothing I can do about that now though.

I keep telling Hana that a big rule in life and survival is DON'T PANIC. You can never make sound decisions or control your body or surroundings if you're in a state of panic, apparently though I should listen to my own advice a little better.