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!