Just another Weggie day

Well the wonderful chaos of the holiday season has come and gone, and I'm taking little steps closer to my computer - alas, a post.

Things are confusing in my Weggie world right now. I'm cutting down on the pred (at 19mg right now) but you wouldn't know it to see me. I'm such a giant in my face, neck, upper back and torso. It's totally gross. People I've known for years don't recognize me from a foot away. Then they feel bad (and they shouldn't cuz I look totally different - totally). I have bizarre lumps growing all around my upper body - hump on my back/neck, two large humps on either side of my throat, a couple of large ones on my back between my shoulders and my neck - it's disgusting... and it's all from the pred. So I'm cutting down, BUUUUTTTT, the more I cut down the more my symptoms come back. So I'm in a pickle right now.

Brian has a new theory that might just be dead on. When I went to the hospital and we started treatment in May, I had lost a ton of weight, and they based the chemo dosing on that weight. I'm now about 15 lbs heavier than my normal weight before getting sick, so Bri's theory is that we're under-treating with the chemo drugs. I'm at a sub-therapeutic level and the pred keeps the symptoms at bay, but the chemo isn't actually snuffing out the fire. So I don't think I'm flaring, but I do think I'm smouldering and as I get lower on the pred I feel the smoulder more and more. To further support the theory, my WBC (white blood cell count) has been above normal for even healthy-non immune suppressed people, which is the exact opposite of what should be happening when on high pred and chemo - it should be way low, so what up? My inflammation markers are quite high as well so there is a few things that need to be tweaked I believe.

My head is starting to do it's constant headache, accentuated with the odd shot of crazy pain again, my sinuses are constantly stuffed and bloody and I can't sleep at night because of it. Getting some pain in my left leg again, like someone is holding a vise just below my knee. Face and scalp are sore, nose is crazy sore, pain in ears is coming back (and I hate that one)- so yeah, smouldering.

I have an appointment with my rheumy on the 17th but I'd also like to see someone with some vasculitis experience for a second opinion. I know that the biggest problem with Wegener's is under treatment or over treatment. Since I got sick, three people on the forum have passed away from complications of the above two mistakes made by docs not familiar with the disease. That's since last May. I don't want to be another stat of a doc who wasn't sure or didn't want to consult when they didn't know. Treating Wegener's is as much an art as it is a science and you have to look at the symptoms the patient is experiencing as well as the blood work and lab work - can't make decisions based on only one of those factors. I know they're busy but my life is my life and I plan on living a long time and watching my little monkey grow up into the wonderful woman I know she will be. I want to grow old with my amazing husband, and see if he actually will look old one day.

Excited Marta

Just went and got my lab results from yesterday and guess what - wooot woot!!!! Liver function tests are normalizing. The reason I'm excited about this is because we're trying the experiment again, but this time it's more controlled. I've been on the cytox for several weeks, and the symptoms are subsiding. I was taken off the dapsone in fear that it was elevating the liver enzymes, and just last Friday we decided to reintroduce it and see if it throws things off. Not only has it not elevated them, but they continue to normalize. ALT is within normal range for a healthy person, my GGT is still high but getting lower (last test before yesterday was at about 150+ and yesterday was 117) Also my ESR (sed rate - an inflamation marker) is 11. This is where it has been hoovering all summer. It went up to 69 when I was in hospital in November, and I just found out that it was at 118 on May 03, when I went to Emergency in Hinton.

Speaking of which, I had a great appointment with my ENT on Monday - got to see up my nose and down my vocal chords - pretty wild. I was concerned that I might have some tracheal involvement as I've been short of breath and have had some painful episodes in my throat/neck area, but my vocal chords are looking sweet. So I think my problem is stupid pred side effects. Either because I'm blowing up so much in my face and neck area and/or acid reflux from the pred. I think it might be acid reflux. I've got some pills for that now too - just to add to the cocktail.

I had an absolutely horrible appointment with a rude, condescending opthamologist at the Royal Alex Eye Clinic with a total disregard for other people's time or dignity. Arrrghhh. Thank God I didn't cancel my Vancouver trip for that appointment because I would have lost my cool. I managed to keep it but moreso because I was stunned into silence by his comments. Nevertheless, things happen for a reason and since that appointment, things have been going pretty well. Did you see my lab results??? Yaaa hhooooooo!!!!!

Back from Vancouver

Had a wonderful trip to Vancouver with the goils, mom and Hana (the older, wiser version.) We saw Adam, and although I can't speak for the goils, I can say for myself that I had a very interesting and uplifting experience. The positive momentum turn that I mentioned in my last post has continued on its merry way and the weekend in Vancouver just gave it some extra accelerant.

Just as I sat on the couch last year feeling like I've done something drastically wrong and feeling like life is about to take a turn for the worst (two months before the first symptoms, on the day that I came home from getting the H1N1 shot)  this weekend gave me a feeling of something drastically right and life taking a turn for the best. The feeling was almost identical but on the opposite side of the spectrum. It was a very good moment, and I hope to report to you a few months from now that I have no symptoms.

Now it's time to go to bed and get some rest. I am fully pred girl, in appearance and in sleep habits. I'm on 30mg now and hoping to get down to at least 20 as fast as I can. Pred saved my life, but it suuuuucks!!!!

It's a new day

Today I told Brian that it's a new day. I've been feeling a bit beat down by this latest flare, both physically and emotionally, but today that all changes. I told him this as he was leaving the house to go to work, and he sent me this picture via his phone. So even the cosmos agrees with me. Things are about to go right.

It's been exactly a week today that I started back on the chemo and it's also the first day that I've felt like I have a little more energy, less pain, and can breathe through my nose.

I made the decision to snap out of the funk before I woke up today, when I was feeling gross and overcome with yuckiness last night, but here it is, a new day, a decision to take control, and a new, slightly renewed level of energy.

Bring it on!

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.

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

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.

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

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?

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

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.

The hunt is on

Looking for a vasculitis or wegener's doctor. I've searched the Alberta docs and have found a couple of potential doctors who seem very very nice and interested in this nutty disease. I will follow up on Monday to see if they are taking any new patients. Cross your fingers for me, better yet, if you know of someone pass their info on to me. Gracias Amigos.

A little whine with your cheese?

So I went woohooo when I went down to 12.5mg of pred, but now I'm crying the sorry blues. I've been feeling like a bag of poo since then ( a little before, but I think I had a cold then) and it's been nasty the last several days. I actually had to open up the old codein bottle a few days ago. Finally I decided to be brave and up the pred, so I did, two days ago I went up to 20mg. I thought I'd do that for a few days and then come back down to 12.5mg. I've since changed my mind and decided I'll go down to 15mg and stay steady there while trying to figure out if the new immunosurpressant jives with me.

So within two hours of popping 20mg, I felt a relief of the headache, the earache, the stuffed sinuses, the runny nose, the overall body blow feeling. I was really exited about that but nooooooo... nothing can be steady with this gig. Right now I feel like I've been hit by a truck. I'm stuffed, sore and sneazing every few minutes. So what up? I think rheumy is going to get a call tomorrow. Any other weggies out ther experience the same thing? I'm a little mad at Wegener's right now. Or am I mad at pred? Not sure, but I'm mad at something!

There another rant brought to you by your somewhat friendly neighbourhood Weggie.

Hang on tight. Roller coaster ahead.

I remember when my dad worked at Galaxyland at West Ed and kept calling me a chicken because I wouldn't go on the roller coaster. He finally made me go on by saying "You want to be a pilot with the air force but you wont go on the roller coaster". Fine!!!! I went for a ride and absolutely loved it. I went for 14 consecutive rides immediately after the first one. This was many many many years ago.

Well I'm on a different roller coaster now.

I went to Dr. Yan (rheumy) on the 20th and was told that we are going to stop the cyclophospamide - weeeeeeeeeeeeeeeeeeeeeee
I have to stop the pred wean though for at least a month and a half
aaaaaaaaaaaaaaaaaaaaaaaaaaaaa
I'm going to be put on a less toxic chemo drug
weeeeeeeeeeeeeeeeeeeeeeeee
I have to inject it once a week instead of just popping pills
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
He told me that my ANCA was quite high (didn't get an actual number) when I got diagnosed, and now it's in the negatives (again no number)
weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
Have been feeling off for the last couple of weeks (crazy stabbing headaches, ear aches, phlegmy like the early days, stomach pain, eye pain, chest pain and sore teeth)
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
For sure it's not because of coming off cyclophosphamide as I was feeling this way before I stopped taking it
weeeeeeeeeeeeeeeeeeeeeeeeee
Could be the flu shot, could be a cold, could be the pred wean
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa

A roller coaster of a much different kind. I like the one at West Ed better... you are more certain of the outcome than the one I'm currently riding on. But I guess like a roller coaster, it's always more scary when you are on it than it is when you get off and look back at the experience. I guess I just have to keep that in mind an know that I'll look back on this one day and hopefully giggle.

12.5 Today - Woot woot!!!

Pretty exciting!!! 12.5mg of pred starting today. I know the end is farther than it looks because the wean is going to slow down dramatically once I get to 10mg, but it still feels like it's coming closer and closer. I also know that when I say 'the end' it doesn't necessarily mean 'the end' but it'll be an end of one chapter and the beginning of another. The 'baby steps' program is a hard one for a brain like mine to follow, but I think it's like going for a long run or a long bike ride.... you set yourself little markers that you know are along the way and it gives you a sense of accomplishment and a boost to go forward every time you pass one of your self created markers which of course are much more attainable and imaginable than the whole run or bike ride or disease battle process.

Another marker down!

"Healing forces are working their mojo"

When I was working we'd get together every Thursday and read Rob Brezsny's awesome and insightful astrological predictions. It was not only entertaining but always seemed to hit the nail right on the head. I just looked at this week's musings for the first time in many many months and this is what it said.

VIRGO (Aug. 23-Sept. 22): "The art of medicine consists of amusing the
patient while nature cures the disease," said French philosopher Voltaire.
With this in mind, let's evaluate your current discomfort. From what I can
tell, healing forces beyond your control and outside of your awareness are
going to be working their mojo to chip away at your problem. But it will
still be wise for you to occupy yourself in activities that you think will
expedite the fix. Doing so will minimize your anxieties, allowing nature to
do what it does best.

Cool! Hey? Me likey!!!
If you want to see what Rob has to say for your upcoming week - check it out here: http://www.freewillastrology.com/horoscopes/


On a completely different note, the Zazzle store is doing great in the last two days since it's been open for business. I know the prices are higher than normal but the product isn't being mass produced, so I can see how it would cost them more to make. The 'royalties' that I get (which will go towards publishing the book) aren't very high but in our first two days we've done $300 USD in sales. Way to go Weggies and friends. You really rock! Another thing that makes me think that more good things are coming out of this sickness in my life than bad. I have many more ideas that I will continue to play with and put more products on there with more choice. I'll also contact some other portals that might direct people who I might not personally reach.


Again A BIG FAT THANK YOU to you all.

Shirts and other goodies are ready to be purchased

Lets start making money so that we can go to phase two and build a book. I've just put together a bunch of t-shirts, to-go mugs, and porcelain mugs on Zazzle where you can purchase what you like for Christmas or just for fun. If you have any ideas, please feel free to pass them on and I'll bring them to reality. Here are links to the my new store:

Canada:
http://www.zazzle.ca/weggiesunite*
United States:
http://www.zazzle.com/weggiesunite*
UK
http://www.zazzle.co.uk/weggiesunite*
Australia:
http://www.zazzle.com.au/weggiesunite*


There are some Wegener's specific designs and there are some Prednisone only designs and there are a couple of shirts for Weggie lovers, you know the people in our lives that have been there through thick and thin. So go shopping and have fun.

Thanks Anna

Thanks Anna for the inspiration.

I've gotten back to the task at hand.

I've written the intro - a very rough and dirty (as in still needing some serious editor love) version but the skeleton is there. Now I'm working on how to organize each person's story so that the book is easy to navigate for information gathering but it also flows and is interesting to read for the individual stories within the pages. Once this is done the gathering of stories will start and the forward momentum will continue. Woot woot!

House

When I was in the hospital getting diagnosed, a few people happened to see 'House' that week and told me when I came out that it was about Wegener's. Since I've gotten stronger and less sleepy - ha ha, I've been watching House every night hoping to catch the episode. Well a couple of nights ago, jackpot. Sorta. I saw the episode where a young man of Romani descent got into the hospital with strange symptoms (Season 3, Episode 13, 'Needle in a Haystack".) His organs kept shutting down or blowing up one by one, and his parents weren't into the treatment because they had a history of being persecuted and didn't trust the medical system. The docs would get a handle on one organ and then another would go - at one point the spleen completely blew up and they were convinced it was WG. They thought they saw granulomas on an MRI, but as we all know, you need a biopsy to have a true diagnosis. It turned out to not be WG but a swallowed toothpick travelling through the guys's body and poking organs as it went by them. The parents were right not to treat as we all know the treatment is just a little less nasty than the disease ;)

Watching the episode was both interesting and a little unnerving. It was hairy watching it from an outsider's perspective, but when you're in it knee deep, it's different. You just kinda go with the flow and be thankful that you have something that's not gonna off you today or tomorrow.

So now that we're here and hanging with our families and friends and loved ones, lets laugh as much as possible and enjoy every minute of bonus time given to us.

P.S. See, no pred rage rant today. Ha ha ha.

Getting schooled by a toddler

Well my bunny is off to her first day at school and I had to wake up early to get her there. A hard task for someone who can't fall asleep until 3am. This is all pred induced insomnia. I hate it. It's the thing about the drugs I hate the most. It's a cold and rainy day outside, just like I remember all of my first days at school, but Hana was indifferent as she had no idea what to expect. She went forward with a big smile. A good lesson for us all. Life is always unknown, tomorrow is always unknown, and if you move forward with a smile and no expectations, outcomes can't really disappoint. A lesson learned from a toddler.

Heading into the Elementary School.

On a different topic. I've just checked out the stats on this blog and am amazed at the visits I've had and some of the new friends who are reading it. Thanks to you all for coming to my pages of ramblings. This inspires me to pull up my socks and get working on the two projects I started out with. I'll keep you posted on the progress. I know it's moving slow, but life seems to trump the computer, so I'll try and focus better. So here are some of the countries that have peeked through the keyhole of my Jasper; Canada, Sweden, US, Norway, Australia, Russia, Germany, Denmark, Hungary, Bulgaria, New Zealand.

So welcome my friends, and lets work together to make a difference. I have to say that since I've gotten diagnosed, I've heard of so many people who have WG or Vasculitis and have gone through a painfully long time of misdiagnosis and various medical runaround that I don't think this family of auto-immune diseases is as rare as people think. I think there is more people walking around with it and not knowing they have it than we know. This is why awareness and research is so important. I think new doctors coming out of school are more tuned to it, and we need to do something to alert the long term practitioners to look at and diagnose all of people's symptoms together rather than treating one at a time and missing the correct diagnosis. My dad went to a doctor a few years ago and was trying to tell him what was wrong with him ( he had several symptoms presenting at the same time) and the doctor REFUSED to hear more than one symptom. Told him he has to go out and wait for a second appointment to get his second symptom heard, and so on for the third and fourth (this after dad had waited for over two hours to see him.) I was sooooo totally pissed when I heard that, I wanted to go and wring the doctor's neck. Needless to say dad never went back to him - even though he had been with him since the guy started his practice. Jerk. That is not medicine, nor a doctor. This is what we need to eliminate from our medical system. Doctors who forgot what doctoring is all about.

Ooops. I think I might have ranted there a bit. Oh well. Have an awesome day friends.

Life changes again tomorrow

I was talking with a buddy who's also got WG (shorthand for Wegener's Granulomatosis) and we were talking about change. I love change. I have always loved change. I find that any change is change for the better, even if it sucks at the time. Wegs has been like that for me. It has changed my life in so many ways but I think most if not all have been for the better. Granted physically I am in crappy shape compared to where I was before the events of May of this year, but it's giving me an opportunity to work towards a much cooler goal as far as physical shape goes then before. Before it was just for the fun of it... the skiing, the biking, the running, all of it was just for fun - now the goal is to get better and stronger and healthier and be there for my family, a much worthier goal, no?

Back to the topic at hand. Change. "Change is good donkey", and tomorrow life takes on another great change for my amazing little family. Hana goes to her first day of Nursery School. I know, little change in the big scheme - every family experiences it, everyone goes through it, but boy does it taste sweet to me considering that for a few moments in a hospital bed about five months ago I didn't think I would be alive to see this day. I'm so stoked, I have tears running down my cheeks as I write this. The happy kind of course.



Hana getting a bang cut for first day of nursery school.

 Today I also went down to 15mg of pred. I've been dealing with a cold the last few days, my first since I started the drug cocktail (I still owe you a list of immunosurpressant side effects - later) and being immune compromised. The physical effects were there but I think they were less of an issue than my mental angst about the whole thing. The viral stuff is OK, I think it might hit us a little harder and linger a little longer, but it also opens us up for bacterial and fungal infections. THAT is what I worry about. THAT I don't want to deal with. I see my rheumy on the 20th of this month and we will probably switch from crazy toxic chemo to just toxic chemo and see what happens. By the time I see him, I should also be on 12.5mg of pred, so hopefully by then I'll be able to report some improved sleeping habits. Any sleeping habit is good as long as it has actual sleeping in it, I'm all over it - ha ha.

Prednisone and it's wonderful side effects

I'm feeling a little guilty cuz I haven't done much on the t-shirt or the book front, but I've been really trying to get out and get stronger, and somehow the day's hours just slip away into oblivion. I keep wanting to have a sleep in the daytime too because sleeping at night is absolutely impossible (one of the pred side effects I hate the most) but again, I have no idea how it is possible for each day to slip away so supersonically and stealthily, but they do.

I finally coloured my hair today. The three strands left on my head (I'm exaggerating, but not by much) hadn't been coloured since before I got sick, and my hairdresser refuses to touch me while I'm on chemo, and I was starting to look a little witchy - just in time for Halloween. So thanks to my beautiful sistah, I now have a continuous brown hue around my head. Feeling a little better on the self esteem side of life but there's a loooooooooong way to go before I feel like my old self again. The trick thus far has been to avoid mirrors and pictures and any reflective surfaces, cuz on the inside I feel like Marta but on the outside there is no link between what I feel and what's there.

So I was talking to a friend today and was thinking about how little people know about the side effects of prednisone and or cyclophosphamide. So here goes...

Prednisone:

1. The most commonly known and most obvious is the bloating, moon face, and weight gain. This is for many reasons including water retention, the most ridiculous munchies you can imagine - a constant thought in my mind is food, and how to battle the urge to be constantly eating. It also plays a number on your muscles (muscle wasting and muscle pain - the heart is a muscle so that's something to keep an eye on), tendons and ligaments, and combined with being sick and not being able to exercise, this creates a nasty little circle - pardon the pun.
2. A false sense of increased energy on higher doses, and withdrawal and very low energy on lower doses during weaning.
3. Mood alterations - heightened moods in either direction (including what we Weggies call 'pred rage') This happens for a few reasons, but one of them is that prolonged high dose of pred stops the adrenal gland from functioning and in fact atrophies it - which creates a hormonal imbalance in the brain/body.
4. Insomnia - your body's tired but your mind wont let you sleep. This is the one that's been driving me batty since the beginning.
5. As well as having potent anti-inflammatory properties it is also an immunosurpressant, so normal things that people's body deal with on a regular basis without the body's owner even knowing are more tricky in this world. Thinks like thrush in your mouth, plantar warts, a cold, a cut or scrape on your skin and many many more.
6. An altered state of mind. Spacey and hyped up at the same time. Forgetfulness (way beyond what I thought was bad before I got sick) and hyped up all the time - empty running thoughts that are constantly going on and no way of putting on the brakes.
7. They're nasty on your stomach, but since I have no problem eating I always have food in my stomach before I take them, so - touch wood - I haven't experienced any problem with that so far.
8. My hair is stupid. The normal side effect of the steroids is to give you extra hair where you don't want it... which is happening, but it also changes the texture of my head hair, so what little I do have left (the cyclophosphamide - chemo drug - makes it fall out) is super scraggly.
9. Thins your skin - permanently.
10. Gives you funny little marks on your skin. I have a rash on my chest that the doc thinks is pred induced. Also those nasty little skin tags, yup, they like pred parties and are the guests that overstay their welcome.
11. A hump on your back. Right at the top of your back by the neck. It's really cool. Apparently the same thing happens on your shins, but I haven't noticed that yet.
12. Plethora - when you can see the subcutaneous vasculature because of the thinner skin - especially noticeable on the face - make that the moon face.
13. Stretch marks - I thank God this hasn't hit me yet, but with this it could be around the corner any day - apparently due to the thinning of the skin pred stretch marks can be the worst and have the lowest chance of going away to any degree.
14. Decrease in bone density and strength by limiting calcium absorption and altering the bone growth mechanism. This can cause brittle bones and osteoporosis.
15. Avascular necrosis - a rare but possible condition where the ends of certain bones where the blood flows in an opposite direction to most (hips, heels and hands) can die off. Not a good thing.
16. Eye problems. Glaucoma and cataracts can be induced by long term pred use.
17. Increased blood pressure
18. Increased risk for diabetes
19. and how could I forget the sweats... oh those sweats that creap up on you anywhere and soak your face and your clothes, yeah, there's the sweats too.

How's that for a barrel of monkeys?

So there, a miracle drug that treats so many things and treats them so well, but has this great list of side effects that make you look and feel your best - ha. It's what (along with cyclophosphamide - and in Wegener's Granulomatosis' case they have to go together - hand in hand or it doesn't work) is keeping me alive and able to hang out with the people I love, so side effects be damned, I'm upright and watching my family grow.

I was going to write about the side effects of the cyclophosphamide, but I've been typing for way too long now so maybe some other time.

Prednasone under 20mg

Arrrrrrghhhhh!!!!

I've been told

I've been told to do another post, so here goes. I'm at 17.5mg of the nasty stuff - woohoo! Feeling goodish. Went for a walk with Hana (the older version) and she asked me what I see in the future.... like a year from now. I told her that I see life being back to relatively normal - with a few minor modifications. Back to work, back to playing outdoors regularly, back to being me. My Weggie friends would cringe to see this, but I'm putting it down anyways. Sorry guys. Gotta dream. I know I'll have to be vigilant, I'll also have to minimize any stressors from my life as that tends to cause flares, I'll also have to keep getting blood work, but hopefully low to no meds, and strength back at least enough to do the stuff I love doing.

Last week I had a horrible brain week. I'm blaming it on the pred. I took Hana (the younger version) to gymnastics one day too early and dance one day too late - both on the same day. Had her dress up in costume twice in one day just to let her down - psych! The second time, when she realized it was a no go AGAIN, she sat there in her tu-tu, looked at me, then dug her face in my neck and started to cry the saddest little cry ever. Talk about feeling like a horrible mom. Today I've felt a couple of moments of 'pred rage' - just moments - seconds really - then I catch myself, but it's almost like PMS. You know it's happening and the silent observer inside sees it happening but you can't do anything about it. I've read on the forum that the head games that pred plays happen more so when you're weaning and get below 20mg. So here goes. Bastards beware!!! Pred Biatch on the loose.

I think I was wrong

When I was panicked last week about flaring. I think I was wrong. Thank goodness!!! The symptoms I have been feeling and freaked out about (sending a panicked fax to my rheumy and having a bit of a panicked visit with my GP)  have all calmed down. I'm holding off going down on predi for another week just to make sure, but I'm hoping that it was just another blip. Hopefully Dr. Button doesn't start to see me as the 'boy who cried wolf' - this is my second freak out with weird symptoms. At least I got to remember where exactly the pain in my head was. I will never forget now.

What do you expect though, they've put all the responsibility in my hands without really telling me what to do if something odd happens. I will talk to Dr. Rheumy about that on our next visit.

The important thing is that it has not taken a turn for the worst, and is in fact much better than a week ago. Now it's time to concentrate on the good things and the positive goals on the horizon.

Talk soon.

What up?

Soooo, I guess the thing with being a Weggie that is a commonality amongst most of us is that uncertain feeling I spoke of earlier. I've been having a return of the old symptoms - not to the same intensity as before I got diagnosed - but they're there nevertheless. It's funny actually, 'cuz just the other week I was saying to someone how I don't remember the location of the pain I had in my head... I remember the unreal, crazy, ridiculous intensity of the pain, but I don't remember where on my head it was. Well, ask and ye shall receive! I now remember exactly where the pain was because I have it in the same places. If you're curious, it's all over the place really, but the epicentre is in my ears and it radiates out in all directions. Temporal to sagital, occipital, mastoid to mandible (that one feels like a bad toothache) and of course there is the frontal / sinus area above eyes, and below around cheekbones. Cool, hey? My nose was hurting too the other day quite bad, and all I can think of is, how fast do the granulomas eat away the delicate bones of the sinuses when this thing is active and thus, how long before my nose caves in if I'm flaring. My joints are also hurting along with my chest below my ribs (which was owie when I went into Emerg that fateful night).

I'm really really really hoping that this is all because of the prednisone wean and not a flare. I just read some stuff on my 'go to site' where all my super wise Weggie friends manage to bring me back to reality when I have a panic attack in my head that the joint pain and some of the other stuff I've been feeling might be associated with the wean, so I'll hold off a little more and see what happens. The problem is that if I'm active again, the trick is to catch it ASAP so that A) the damage done to the body is minimal, and B) we don't have to start the treatment from scratch again. I really want to be off these drugs. We're talking about getting off the cyclophosphamide in the next month or two and switching to something less toxic. Will still be on chemo daily, but not the 'super chemo' that can mess you up pretty good.

Funny where life's path has veered to in my situation. Who woulda thunk that these would be the crazy thoughts going through my head five months ago? I had a completely different set of crazy thoughts going through my head at that time. Thoughts like 'hope I do well on that web job interview', 'how am I going to get Hana to gymnastics today?', 'can't wait for the weekend so that I can go skiing, and I sure hope is pukes snow on Friday night', 'what am I going to make for supper tonight?'... you know those kinds of crazy thoughts.

I'm baaa - aaack

Just got back from the first holiday since THE EVENT, you know the one...

Shuswap Lake (Blind Bay / Eagle Bay area) was great for us, the smoke cleared up as if by magic. The rain came in just before us to clear things up and then it got nice for a few days anyway. Went with mom, dad, Wendy, Dave, Sadie, and my beautiful peeps of course, Bri and Hana. Food was great, company was great, I got to do stuff and be around people so that the constant topic of contemplation was pushed aside for a while. I still had moments where I was trying to figure out what was behind the odd stuff I would feel, but distraction is a good thing.

I went water skiing - one flip - but got up nevertheless. Yeah, I did. Dropped a ski too and got in some turns. I really did and had a great time doing it. In the back of my mind was the imagined voice of Sangye (I've never heard her talk, but have seen her words of wisdom quite a bit over the last couple of months) telling me about my ligaments and joints and how prednisone messes them up. I was imagining a Monty Python moment where both my arms get pulled out of their sockets by the boat as I say "GO". "Oh, I'm alright, it's just a flesh wound." BUT that didn't happen and unfortunately for you, my arms and the middleman between my crazy thoughts and the keyboard, are still attached.

I think the most dangerous thing I did was to go to the outdoor water slides with the families and take Hana down the kiddie water slide into the kiddie pool. Healthy people are squinting their eyes right now, trying to figure out what the heck I'm talking about, but all of us immunosurpressed Weggies are saying ... 'ahhhh'. Swimming pools with a number of children in them are a very creepy place indeed.

The calm before the storm.
Hana and me on the boat before the big storm (after water skiing).
An hour later the scene was quite different - not in a good way.

Many other exciting things happened while we were there, a golf game (9 hole) with Bri and Dave of all people. Yes, Dave. Getting caught in a North Atlantic storm in our rented speed boat. I had no idea that a lake can create such huuuuuuge waves. I have to say that my little girl was awesome and behaved like I couldn't have hoped for or predicted. That was an expensive day as Brian lost his prescription sunglasses during that marine experience. Watching the salmon run was mind blowing - what a life. We have nothing to complain about when you compare yourself to that crazy salmon. The Enchanted Forest was great because it had witches, lots and lots of witches. Boccie, Frisbee, a lot of rock skipping, and of course tons of great food - which made the preddi in me very happy.

Needless to say, my plans of playing with the book idea during holidays didn't happen, but I will be putting some thought into it in the upcoming weeks.

Saving the drama for my momma

Blah blah smoke blah. Still can't see the mountains but it's been OK hanging in the house. This morning I looked at the weather forecast and it's supposed to rain tonight and Hana said to me " does that mean you won't be a prisoner in your own house?" - it's amazing the hearing they have and then DON'T HAVE when you want them to do something. I love that little creature.

Bri went for a bike ride today up to Cavell "just to get the blood moving". I use to be one of those people that paid no attention to air advisories. I love THAT creature too.

I feel alright when I'm inside, so I'm sure it's the smoke that made me so whiny on my last post. I'm still at 25mg but I think I'll go down next week while we're on VACATION - wooot double woooot!!

Mom and dad bought a couple of hepafilters in case the smoke is crazy at our destination, so if I have to stay inside, so be it. I can start the book template - incidentally, spoke with a publisher's representative about that yesterday, so it's seeming more and more like reality. I'm stoked.

Hopefully this post wasn't as whiny as my last. I hate being a whiner.

Oh yeah, it's Rodeo Week in Jasper, and I'd like to thank, hug, kiss, etc. Hana the First for taking Hana the second to the Rodeo twice now. Love ya Hanas.

smoke smoke go away....

The uncertainty continues.

The one thing that really messes with my mind since I got into the world of Wegener's is the uncertainty. Coming from a place of knowing, being more self aware of my body than the average Joe, to this constant uncertainty is quite un-nerving. So here's the quagmire I'm working on right now.

Factor number 1. The air in Jasper is smoky, very very smoke-eee. It has been this way for two or three days now from the fires in British Columbia.  When I left the hospital one of the things that was very stressed to me by the docs (my wonderful Dream Team) was to avoid smoke of any kind - campfire, cigarettes, any and all smoke (I would think that would include forest fire smoke in the air.) I had quite substantial lung involvement and can really feel it when it's even a bit smoky.

Factor number 2. I'm weaning off prednisone. Notice I said 'off' - dare to dream. I started at 60mg, am now at 25mg and supposed to go down to 20mg tomorrow. My rheumy has basically told me that I need to make the decision as to the rate of the weaning based on how I feel. Whoa!!! That's a lot of responsibility placed in the hands of a Weggie neophyte. The problem is that if the weaning happens too fast there is a risk of a flare. What's a flare you ask. A return of the gross Weggie symptoms that made feel like I'm at Death's Doorstep in the first place. How do you know if you have a flare? Not quite sure, but from chatting with my other Weggie friends, it's listening to your body and paying attention to what you're feeling, and if it goes on for 'too long' then you gotta go see your doctor to make sure you're not flaring. That in combination with regular lab work should alert us if I am flaring. What happens if I do flare? Not sure on that one either, but I think that we have to jump up again with the prednisone. That would suck because I'm not really digging the side effects of the drug and despite the fact that it's keeping me going right now, I would love to get off it ASAP.

Factor number 3. For the last few days I've been feeling some old feelings in my head. The intensity level is nothing compared to the last couple of weeks before diagnosis (which was out of this world painful) but they're there nevertheless. Popping ears, headache, sore throat, pain in chest area (same side that was bugging me just before diagnosis), leg in a vice grip feeling, generally quite tired (sleep is an issue too, but I got a relatively good sleep last night - had the bed to myself). I also had a crazy pain in my chest after being outside for about 20 minutes. I couldn't believe how much it hurt, and it felt like I couldn't take a breath... quite cool.

Factor number 4. Hana's all snotty and sneezy, there has been all sorts of bugs oscillating around me lately and not quite making their mark - the immunosurpressed large girl now living in my mirror. Have the germs finally succeeded?

So that's my dilemma. Why am I feeling the way I am, and should I be concerned? I think what I'm going to do is hold off on taking the 5mg predi off for this week and let it go another week. Hopefully the smoke goes away, and between the two I'll feel more 'new normal' again (old normal is a long ways away.)

I'm on a roll

Here are some more T-shirt ideas. Andrew, I've taken one of your ideas and added a picture to it. Hope you like. I'm having fun now. Caution, one of the shirts will get an ear worm (a silly song that gets stuck in your head and refuses to leave for days on end) going, but it's an ear worm with a twist....

Wegener's t-shirt idea (for the sleep deprived pred junkies)

Andrew's caption of 'Zero to Pred Rage in 2.3 seconds'

Wegener's T-shirt with ear worm potential. For those weggies who look in the mirror and see someone else looking back - while sweating profusely.

Here goes.

I've started playing with some ideas for T-shirts to get some awareness out there on Wegener's, have some fun with what we're dealing with (drug side effects, and more) and hopefully start the ball rolling with raising some money for research. Here's my first t-shirt design and any money that I make as profit (i.e. above what it costs me to produce and send out) goes to research for Wegener's. That goes for any money I might get from Google from people bouncing to various ads from my blog - I'm not holding my breath on that one though.
So, here they are... the first try. Looking for feedback. If I get some, there might be some tweaking of the design, otherwise, I can look into how much it will cost to print them and send them to you all throughout the world. Slightly anxiously looking forward to hearing what you think.

Here's the girl's / lady's / woman's / babe's (whatever you like to be called) shirt

Ladies Wegener's Granulomatosis T-Shirt design number UNO.

... and here's the boy's / guy's / dude's/ gentleman's/ man's version

Men's Wegener's Granulomatosis T-Shirt design numero UNO.

So, let me have it. I think I'm ready. Comments, suggestions, pred-rage, I'm ready for it all. I also have a few others brewing on my computer screen which I'll post in a bit.

Why am I doing this exactly?

The question posed above is more for myself than for anyone else. I just told my husband that I want to start a blog and he asked me why. Good question I thought, and I had a hard time articulating the answer.  I've been thinking about it for a while for several reasons, and I guess this is as good a time as any to put them down in writing for myself and anyone who happens to stumble on my rantings.

I've never thought that I have anything to say that would be of interest to anyone, but I now find myself in the unenviable position of having recently been diagnosed with Wegener's Granulomatosis. If I were playing the odds on the other side of the spectrum, I'd be one of those rare lucky folks who won the 'BIG ONE' - the multi-million dollar sweepstakes that we all dream about, unfortunately my odds came in the wrong side of the tracks and I find myself with a lifelong auto-immune disease that is so rare that there is hardly anything out there for me to use as a reference to get my head around what's coming my way.

I was lucky to stumble onto a Wegener's Granulomatosis forum (http://www.wegeners-granulomatosis.com/forum/ )(http://www.wegeners-granulomatosis.com/forum/) with a bunch of strong, wonderful, supportive and knowledgeable Weggies who have been a pillar of strength for me in the last month and a half. Thanks you guys! But if you wanted to go to a bookstore and buy a book on the disease, good luck. Apparently there's no money in selling to us... the curse of being so darn unique. Wegener's is part of the Vasculitis family of diseases - which is an inflammation of the blood vessels. If you want to know more about Wegener's you can check out the Vasculitis Foundation of Canada(http://http//www.vasculitis.ca/vasculitis-resources/wergeners-granulomatosis.html) or the Vasculatis Foundation in the US at (http://www.vasculitisfoundation.org/wegenersgranulomatosis)


So the reason I started this... I want to make some dough (not the cookie variety, although being on prednasone don't think it hasn't crossed my mind) for the research for Wegener's and I have ideas, lots and lots of ideas. Ask any of my friends, I'm always concocting something goofy in my little brain, but now I have a purpose, so lets see where the universe takes us. I want to use this blog as HQ for my ideas to make money for Wegener's research and awareness campaigns and shenanigans. Also I'll use it for some random musings and entertainment when I can't sleep at night (another great prednasone trick.)

 A few decades ago, 95% of people diagnosed with this disease died within 5 to 8 months from diagnosis. Once the drug "cocktail" as I like to call it, was discovered, a diagnosis was no longer a death sentence. I dare to harbour a fully realistic hope of a drug free remission in the future. Granted, this disease is anything but ordinary, and because it's systemic, it tends to affect everyone slightly (or not so slightly) differently, the drugs we're on (which are highly toxic and have some nasty, nasty side effects) also react differently with each patient and doses and combinations need to be 'noodled' with to get the closest to perfect effect - if there is such a thing. So YES, research is good, as I am given extra time to spend with my beautiful daughter and my wonderful husband and amazing family and friends, but more research is needed as people are still dying and suffering from this disease, and my sneaky suspicion is that we'll be hearing more about it rather than less.

Tomorrow I'll start putting some ideas out there.