Spreadin' the word

So I'm back at work and it's awesome. I love the energy of the people I work with despite the fact that I'm working from home. Still a little germ shy with all the insane drugs in my body. I've been feeling a little off lately but I'm hoping that it's germ related and not antibody related. I went for a blood test yesterday and will see what the results are today. If anything is strange I will call my super doc and see if another RTX is a wise step. What I'm really really really not interested in is letting something go too far so that I have to start the fight from scratch again. I'm on 9mg of pred and not even remotely interested in going up on that evil, life saving grossness.

Things are looking like I might end up on TV spreading the word of Wegener's. Nothing is final until it's final - an important lesson I've learned sportin' this disease (amongst a myriad of other lessons) but it's looking like it's a go thus far. If / when it happens I'll post a link of me looking like a fool.

Take care my friends and remember to only sweat the big stuff, the good stuff, the important stuff.... the little stuff is just that - little.

I owe, I owe, it's off to work I go....

Well, tomorrow is that day. The first day back at work since all of this started. I'm going back part time to start and working from home to ensure that cubicle land doesn't get the best of my compromised immune system, but I still feel a bit like a kid on the night before their first day back at school.

Don't know if you know that feeling... the one where you're feeling like your body is putting on a brave face and is all calm and cool on the outside but inside there is this twang, this subtle but overwhelming vibration that's making you question yourself.

I'm excited to be at that point in this ride where things are getting more and more like life before Wegener's, but as I said in an earlier post always a little afraid that I might jinx the whole thing and fall back into the vortex. That's one vortex I'm so not into falling back into. I look forward to seeing all the wonderful peeps I work-ed with and to see what kind of trouble I can stir up at work (that's my nature if you haven't noticed yet - wa ha ha ha).

It was a year ago now that I went and got my first flu shot (second H1N1 shot - which was combined with the regular flu shot) and ended up with a full on flare in the hospital getting pumped up with insane amounts of steroids. So I scoff at all the signs around town encouraging people to get a flu shot. Apparently they have the H1N1 in there again this season, and I'm not interested in another hospital visit and setback that takes a year to get a handle on. Just before going to Hawaii, my blood work was the BEST it's been since this all started. Everything on there was within normal range. Two weeks ago I went and all of my liver function tests were quite elevated again... total bummer. I went again today - two weeks early - to get another blood test and see if I'm trending or if it was just a blip. I'm hoping for the latter. Will know tomorrow. So tomorrow is a big day in more than one ways. Guess I should go to sleep now and get ready.

Nighty night y'all. Remember to enjoy all of the little wonderful things life has to offer. They truly are beautiful and make the things we worry about seem quite insignificant.

Peace.

Shit!

Jack's avatar on the forum was
 Leonard Cohen (one of his two fave
artists, the other being 'The Gorilaz')
I will never see Leonard the same again.

I am super bummed about the events of the last few days where yet another great person was taken from this planet by this ugly disease. "Jack sadly died on Friday 23rd September 2011 at 11.05pm UK time"  - we were informed by his loving family. He was diagnosed in 1988 and has gone through many years of intense drug therapy and ups and downs due to both the disease and the treatment.

Jack was an inspiration to everyone who went on the Wegener's Forum for advice, guidance and camaraderie amongst those in the battlefields of Wegener's Granulomatosis. His awesome sense of humour and compassionate ways made the worst of days better and most uncertain of situations bearable. He was quick, witty, economical with words (something I very much envy) and full of wisdom and unfortunately lots of experience with dealing with Wegener's and the medical profession.

This is something he wrote to me not that long ago. "Hope you continue to improve, you have certainly come a long way in the past year and although you will never be the same person, you might even be a better one!"

Love you Jack. Rest in Peace wherever you are and know that you will be alive in our hearts as long as we're here, and after that.... we'll see you on the other side and party without stupid Wegener attached.

Time's fun when you're having flies

I know I've been the absent Weggie, but there's a reason. The reason? Things have been looking up. I'm always so scared to say that so that I don't jinx it (as I'm so well aware now that things can turn on a dime) so instead of telling the world I'm feeling stronger I've just been trying to use that time to try and get closer to the old Marta. I miss her, and want her back in my life. On that note, I got a glimpse of her (not on the outside, but more on the inside) on our first REAL holiday as a family since this all started. We went off to Hawaii for a couple of weeks before I head back to work and since the Wegener's gig started and it's the first time I felt like a normal person in the last year and a half or more. It was great. Amazing. Not sure what part of the experience triggered that feeling, or maybe it was a combination of things, but it was amazing. I had a hard time coming home not because home is bad (home is paradise and I love where I live) but because I really didn't want to loose that feeling of 'normal'. I still get a little weepy at the loss of that liberating state of mind - liberated from Wegener's.

But onto new things now. Hana just started kindergarten and it's only her second day today but she seems to be liking it. There is a whole change of life around starting school which is new and slightly cumbersome but will become second hand in no time. One thing that is slightly perplexing to me is that I think with this disease came some very important lessons in life - whether the disease was brought to us to teach us those lessons or they came as an accompaniment to the disease is irrelevant but they were very focal and powerful when we were in the thick of it - and as things get closer to normal the lessons learned seem to be sliding off the plate like plastic plate full of raw chicken breast quickly getting taken out to the BBQ. This makes me sad. It's sad that we have to get a bitch slap to learn what's important in life and what the priorities are but once the sting from the slap goes away we start to forget, it also scares me that the universe will give another little bitch slap to remind us of the lessons and I'm really not up for another one at this point.

just sayin....

just sayin' not much, but thought I should post. Ma and pa are in Europe and it's hard getting in touch so I'm gonna use this forum to communicate with the rents.

Life's been gouda. I've been feeling stronger and all of the little aches and pains that were so reminiscent of the 'early days' have now left the building. It is because of them that I went to Dr. Y to see if she can put me on the maintenance drug sooner and seems to have done the deed. I did get a sore throat last week though and popped a few oregano pills and did the old 'grappa on a wool cloth on my throat' trick which eliminated the sore throat within two days. The bummer of it is that it has now silently moved on to my lungs. I will do the same routine but if it doesn't do the trick I have some antibiotics prescribed to me for just such a case. I had my doc prescribe me an antibiotic in case I got something while on the plane travelling to Hawaii next month (oh yeah, only 30 more sleeps until I hit the beach and am promptly thrown 'back' into the water by some well meaning environmentalists.) I have a feeling I will be going in for another prescription.

Wendy Hall, bless her soul, lent me her behind the bike trailer for Hana and we tried it out a few days ago and it ROCKS!!!! So today Hana and I went for our first real mountain bike ride together. It was absolutely fabulous. Absolutely! We rode. We talked. She's a smart kid. I so totally love that monkey. We hung out and just sat on a bridge and looked at the scenery. It was a magical afternoon, and I got to get some exercise and get one step closer to 'old Marta' (there are a lot of steps to go, but as with Wegener's, one little step at a time.)

I'm also going to do a little experiment this week. Hana is in Drama Camp (they let her in underage because of her natural aptitude for drama - ha ha ha ha - she looooves it even though she's a year and a half under age) and while she's in there this Wednesday, I will give selling elephant ears/ beaver tails (deep fried dough with icing sugar on it) a go at our local Farmer's Market. It might suck, or it might be great. I want to try it though so I'm never asking myself 'what if'.

Talking/preparing to go back to work in September (end of) after we get back from our holiday, so that's kind of ominous, but gotta do it. I'm looking forward to doing something productive with all of my old buds from the office. I will be working from home though just to avoid the cubicle land petry dish. I'm quite freaked out about getting sick again. "They" - docs and other smarty pants who know about this disease say that an infection of any kind can kick off a flare, something I am not in the least bit interested in, also I have a harder time fighting any bacterial infections and viral stuff takes a long time to get out of my system with my lack of 'fighter cells'. Oh well. I found I was the most productive in my life when I worked my home business before getting on with Parks, so we'll see. Maybe I'll start a trend.

Dancing in the streets

The 100 block street party is on tomorrow and I'm up looking for just the right ideas. I just downloaded some face painting ideas to add to the party feel, also some good Bulgarian eats are in order. Trying to get some pop up tents to make sure we don't get rained out, but it'll all be great. I'm stoked and quite looking forward to it. Yeah, another distraction.

'nuf bitchin'

I just noticed that the last couple of posts have been a wee bit on the negative side of things and this needs to be rectified this instant. From now on only good stuff (until something comes up that pisses me off ;)

My garden looks great. My treadmill sits there looking at me longingly. I have heard the faint siren call of the P90X discs (baby version of course) and I just read a post from a fellow Weghead who just pulled off a 60km road ride with a 1500ft elevation gain - maybe it's time to saddle up the old pony and check out Athabasca Falls - very very slowly. I'll report which one of those activities wins. I am without childcare and hubby is off to another bike race this weekend, so I think it might be one of the first two in the immediate future.

Peace out friends.