Celebrating the small victories

Who would have thunk that something as little and seemingly insignificant as one's Eustachian tubes would generate so much joy. Well, they have in my case.

I had completely given up on my sad little Eustachian tubes but I just found out from my ENT that the tube in my right ear has gone the way of the Dodo, and now while I enjoy the sunny world of my most therapeutic place on earth, my second ear is fixing itself up. I can once again whistle out my left ear (the one that still has a functioning tube left in the eardrum) which means that my Eustachian tubes are no longer inflamed shut... a condition I was certain would be with me for the rest of my life. The joy from this one turn of events is so tremendous and a tiny little sign that things are moving in the right direction that I've been so happy and not focusing on the horrible feeling of trying to get of the prednisone.

I'm still at 6mg about to go down to 5-6 alternating in about a week and I dread the next phase of feeling like a useless bag of poo, however I am treading in the pool of joy over the Eustachian tube development...and did I mention I can whistle out my ear... how's that for a killer party trick.

Worm hole

I feel like I've been stuck in a worm hole and time has taken on a whole new quality. It seems to be flying by at phenomenal speeds and I'm just stuck watching it warp by.

I've been conspicuously absent from here and the Common Thread blog and have been thinking about getting on and writing my ever present swirling thoughts down but these impulses to write always hit me in the middle of the night when it would be completely not feasible to get up and start things up while the rest of the family is in their fragile sleep mode.

I pulled through the first annual Pajama Day and it was a screaming success. I spent most of the day on February 29th covered in goosebumps and on the verge of tears, completely overwhelmed by the support and sportsmanship of my beautiful community. I put on my PJ's (my going out PJ's) that morning and dressed Hana in hers hoping that there would be at least one other person out there wearing theirs. Well to my complete shock and surprise, I got to the school and saw a number of the parents dropping off their PJ clad kids while wearing their own PJ's. The feeling and PJ wearers just snowballed from that point on. It was a magical day. Truly.

I spent most of the energy I had stored for the whole month on that one day but it was so totally worth it. I've been sick with a cold since then and it's just now starting to go away but again, worth it. People are telling me how wearing their PJ's all day changed their perspective in so many different positive ways.

My other issue right now is that I'm weaning off the pred, and it's lower than what my body makes but higher than what is needed to get the adrenals to even start waking up, let alone making their own corticosteroids. Soooo, the crappy side of this equation is that I wake up with no energy and the energy levels just drop from that point on throughout the day. There are also constant aches and pains throughout my body - all the time - that I am attributing directly to the wean. I think the disease is at bay now - I'm scared I might jinx it by saying so because this stupid disease can turn on you at a moment's notice. I have this feeling now in my brain that the pred wean might be one of the more difficult things throughout this process. I can really feel it, and I know that if you misjudge it by even a little bit you can set of a flare and be back at square one within a week. It's happened to a Weggie friend, and I do NOT want to go down that road.

There, I just got my mandatory whining in - sorry. I try very hard to keep my wa-wa's to myself, but I assume that there are other Weggies reading this and it might be something they might also be feeling and would want to know that it's not the exception but more the norm.

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.