Monday, November 29, 2010

Are you a Weggie and want to contribute your story to the book?

I have the outline ready to go and if you are interested in sharing your story, please send me a note with your contact information and I will send you the outline and information on what's next.

I think that if we all get our stories done and together by early to mid spring, then I can get an editor to make sure that it's all readable and start laying out the material for the final product.

The money from the Weggie goodies sales is coming in slowly but surely, so hopefully by the time we have all our ducks in a row with content, there will be enough to self publish. I will also seak out some publishers that might want to help us out.

Just like with Wegs, baby steps.... tiny little baby steps towards a beautiful goal.

Saturday, November 27, 2010

Survey's In - and still coming

Just got back from the city and felt like doing something interesting and with forward momentum. So I just purchased the pro version of the surveymonkey survey and can now post the results without having to do a bunch of work. As I write this we have had 94 Weg Heroes fill out the survey and here are the results. It's quite interesting and telling. Maybe Wegener's should be more discussed in ENT school. Hmmmm.

http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96ekw28_3d

Wednesday, November 24, 2010

The puzzle continues

I've been off for a while.

I'm getting stronger now, but there are issues that are making the docs go 'hmmm'. My rheumy called me a 'strange case' yesterday - he has no idea  how strange I really am.

So now, just weeks after being in the hospital with a flare, I am officially on nothing more than 40mg of pred. This does not a Wegener's treatment make. It does make for one giant round face, big rounded shoulders and a belly that made a lady Buddha rub me and say congratulations last week.

The mystery? My liver enzymes keep going up and up. The initial thought by the docs is that maybe it's the cyclophosphamide that's making them rise. So stop the chemo. The day I stopped though I had been taking the chemo for just over a week (which is how long it takes for it to start doing it's magic) and the next day they started to drop. So are they dropping because I stopped for one day or because the chemo just started to work and is making things better????

Possibility #2. I am taking Dapsone (an antibiotic to help me eliminate the threat of a deadly lung bacteria that likes to hit immunosuppressed chemo junkies like myself). Normally I would be taking Bactrim, but am allergic to it, so Dapsone it is. Apparently Dapsone is known to mess with liver with a significant percentage of it's users. So STOP the Dapsone and see if the liver gets better. On a side note, it's funny that I never actually looked into Dapsone (I'm a bit of a geek and read all the info on all the drugs I'm taking, for some bizarre reason, I never got curious about Dapsone - apparently used to treat Leprosy -  hmmmmmm)

So I understand the experiment we're attempting, but I don't think we're controlling the variables well enough to make any significant conclusions, and in the meantime we're not treating the disease.

I'm giving this experiment one week, as I know that things can take a turn for the worse in no time, and then it's a total pain to try and reel it in, then I'm going to need some concrete plan as to what we do to get this bitch kitty under control.

My theory? My theory is that although 'exceedingly rare' there is a possibility to have liver involvement with Wegener's, and well, I'm exceedingly rare, that's why Brian married me. My liver enzymes were high before diagnosis (before dapsone, before cyclophosphamide) once treatment started liver enzymes went down. Now I  had a flare and poof, liver enzymes up. I think that when I'm active Wegs (as opposed to active Marta) I have liver issues. But better safe than sorry with the liver I guess. I can get a liver transplant, but being exceedingly rare, I also have (A-) blood type, so a donor would be hard to find indeed.

Tuesday, November 16, 2010

Feeling Wasted

I haven't been ignoring, just trying to re-group and it's a long long long process apparently. Been thinking about posting, but the energy level is way down, so I'm mustering to do this and will be back on with updates ASAP.

Peace out y'all.
m

Thursday, November 11, 2010

What a week or two

Just met a real living Weggie. It was Weggies Unite for real. Phil, it was great meeting you in person and sharing horror stories and laughs at the same time.

Weggies Unite atop Marmot Basin - Nov 10, 2010
Me (big phat pred momma) and Phil (handsome young Weg dude)
 The flare is doing it's thing. I feel like there's a bar fight going on inside my body. The pred alone is helping with the inflammation and the crazy pain that goes with it, but there's definitely bad things going on inside. I'm spitting up granulomas from my sinuses. I'm having a hard time articulating my words - this happened the last two days before diagnosis the first time - not sure if it's physiological or neurological but my tongue doesn't seem to be working right inside my mouth. My eyes (particularly my right eye - which is where the action seems to be this time - right side) are quite sore and vision is decreasing and spots and floaters are increasing. Joints are quite sore, I hobble around like an 80 year old in the morning. Hearing is going very fast in my left ear (the epicentre of all the problems the first time) Breathing sucks. Energy level is at about 20 out of 100. My skin looks like 'The Man Who Fell to Earth' (remember Bowie?)

My local GP, Dr. Wilson (I will name the awesome people on here - so hope you don't mind doc) is amazing. I love her. She just got thrown into the Wegs fire a week before I landed in hospital, so I totally respect her holding off giving me the go ahead with the toxic crazy treatment that goes with WG, she's waiting for the go ahead from the specialist.

Has anyone heard of plasmapheresis for treatment of this disease? Would love to hear if you have any insight into it. Just stumbled into the idea yesterday (although apparently the my 'team' were discussing it as a treatment option when I got diagnosed, but that was when I was completely out of it, and don't remember any of that talk.) Also curious if any other WG patients had elevated liver enzymes before diagnosis. That's been the hick up on actually treating the problem. Also any comments about  cytox vs rtx?

Sunday, November 7, 2010

Made me a survey

So after the chaos of going through this again and trying to figure what next, I've been recollecting my brain cells into a coherent matter (hopefully without the aid of any granulomas.)

I was lying in bed and wondering about patterns that I've noticed from reading other WG stories and stuff and decided to put together a very unscientific survey that is just for me to settle my curiosity.

If you are a Weggie and would like to put your two cents in, it really shouldn't take more than 5 minutes max, I think it would be interesting to see if there are any patterns that emerge. I've only done the free version so I only have 10 questions on there (I have more but that's for later). I'll post all of the responses and they will be completely anonymous and private. Just a glimpse of stuff with no human names behind it.

Here's a link to the survey, and thanks in advance for doing it up my friends.

http://www.surveymonkey.com/s/LGMC9Y8

Saturday, November 6, 2010

Flare, Blaze, Burst, Flash, Erupt

Six months to the day that I got into the hospital in May is today, which is also one day after getting out of the hospital on round two.

Yup. Just got out of the hospital yesterday with my first flare. Total bummer, but it was to be expected. I've been feeling off since mid October and it's been getting progressively worse until I checked into Emerg last Tuesday. Hallelujah for morphine. The pain that comes with this gig is really quite something. Some docs who might be desencitized to patients who experience pain are quick to write off head pain as insignificant, but man can it be debillitating. It's unreal how completely useless a person can become when there's a hurricane of various types and levels of pain swirling around (it doesn't stay in one place, it swirls, and jabs and stabs, and you just find yourself chasing it and trying to figure out which is the best way to lobb of your head and still be a good parent.)

When I first got onto the treatment I was put on 60mg of pred, considered on the high end of pred regime, well this week I did three days of - are you ready - 1000mg per day. I was high as a kite. It sure took care of the pain though, it was comical too. I don't think I've ever been that buzzed in my entire life. My mouth and my brain were not in sinc, and it was hillarious. I was an outside observer unable to do anything as my body and mouth and brain competed for attention from the all mighty steroids.

I'm now on 50mg of pred a day, so the crash is significant. I'm also concerned as I feel like we're not really attacking the disease because I'm not on the immunosurpressant because it's messing with my liver. So pred alone, and if you know me (I like to research a little... a little- ha ha) one thing I have found with Wegener's is that pred alone or chemo alone does not do it. It HAS to be a combo of the two.

I'm also concerned because on this go round my right eye is quite affected. I am worried that by not treating by protocol (i.e. undertreating) I will do permanent damage to my body. There's the eye, there's the sinuses (which are continually popping like Orville Reddenbocker in my head) and of course there's the kidneys. There's silent damage that can be going on without us knowing on the outside that could render me into an incomplete version of my former self.

With all of this there is a silver lining. I have reconnected with an awesome local doctor who was with me when I was preggers and she just came back to town. She is my go to now, and I'm so totally thrilled that she's in my corner. It's also great to have someone so close and accessible when the shit hits the fan. She was totally there for me this week, and I know that with that energy we can lick this thing into several decades of remission.