A little red cheeked

I feel a little embarrassed for not posting for so long, but I have a reason. I also have a reason for getting on here right now... all in due time.

My reason for being absent is that I am getting a full on '$#!^ kicking' while weaning off the pred. I must admit it was at its worst when I went down from 7mg. You've already read that if you hang out here, but it really did a number on my body, my brain, and my emotions. I don't know, am I wrong to assume that as you're getting off the meds things should actually be on an improvement tangent? Well, it's not that way with pred. My wretched life saver. For all the good it's done in keeping me upright and alive, it sure has a heavy price to pay. I am now at 5.5mg (taking .5mg off each month) and according my my super doc, the adrenals don't start waking up until you're at 5mg.

There are so many thoughts that I have been wrestling with (nothing scary) and as I sit here and write on this blog again, I really want to share them all, but then it would turn out to be yet another novel type entry, and I wont subject you to that.

I am writing for a reason though. I just heard a story that shook me to the core. Reinforced the idea that I'm one of the lucky ones because I'm still here - raising shit, and causing all kinds of trouble. Apparently though that's not enough, I need to stir the pot more, and more and more, until there are no more senseless deaths from this stupid disease. I think one of our biggest problems and obstacles is the fact that a) this is a rare disease that masquerades itself as a common cold, or flu, or chest infection, or ear infection, or eye infection or throat infection... and regular doctors who either missed rare disease day in med school or are not listening to their patients and treating them like a hypochondriac or just another number or means to a living for them are missing diagnosis and in some cases letting people die. It makes me so so very angry, I wish I could explain it in words how this gets me to the core. Another problem is that kids are dying undiagnosed because the doctors that might know this disease from a textbook would think that it's a disease for people in their fourth or fifth decade of life. Well Charlie, that's not the case anymore. If you check out the results from the Weggie Survey http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96ekw28_3d - out of the 741 Weggies that have answered, 10 are under the age of 12years old and 81 are between 13 years old and 20 years old. That's 91 kids that if they ended up under the wrong doctor might have died. I just read a story of a 17 year old in UK dying from it, getting tossed back and forth between doctors and told there's nothing wrong with her, she ended up in a coma and then passing away a day before they were going to give her plasmapheresis, I know of a two year old diagnosed with WG and now today I heard another horrible story very similar to that of the 17 year old in the UK, but this one is way closer to home. It absolutely infuriates me. This is a scary but treatable disease, and people should not be dying because of lack of treatment. Since diagnosis two years ago, I've heard of at least 10 people dying from it, and most of these cases are either due to under-treatment, over-treatment, or complications from the treatment.

I find it so strange that in order to survive you have to be lucky enough to land in the lap of the right doctor or team of doctors. We're super unlucky to get the disease in the first place if you look at the stats, so luck at that point is not really on our sides. I have now met too many people dealing with docs who don't care, don't try and make them feel like horrible people for complaining about the pain that comes along with this. And if you haven't been there, let me tell you it's a doozey. So what do we do to eliminate the survival rate that's dependent on chance? I'm so crazy lucky to have landed in the lap of Dr. Zia and his team, and now to have Dr. Yacyshyn who is the best thing to come my way since diagnosis.

What do we need to do to take this horrible thing and use it to make a change for the better? How do we save more people from ending up on the wrong end of the life spectrum? I will not rest until I see something positive and good, not just for my family but for many people, come out of this. I promise.

2 hours later:  I have now thought about it for a bit and let myself cool down from being so upset, so I have to say that I get it from the doc's perspectives. They are regular people like everyone else, and in the experience of their career if someone presented with said symptoms, of course you'd go for the most common of possibilities when diagnosing. But I think if you see someone keep coming back with the same symptoms and they're not responding to any treatment, and the person is deteriorating in front of your very eyes, then it's one of those moments when you as a doc need to dig deeper and help that person get well, find a diagnosis and get them to the right experts. What also irks me is specialists who refuse to consult, to listen to symptoms and treat someone with a life threatening disease like any other patient dealing with inflammatory issues. This is where under and over treatment come in. I'm watching a friend right now dissolve while her specialist is dilly-dallying and ignoring her and has her on the most insane pred wean regime I've ever heard of for a WG patient. If you scour the forums, you'll quickly learn that too quick a pred wean is a very likely suspect in triggering flares. From listening to her symptoms I'm so worried that she is in the midst of a flare and her support system (medical) is a little shaky with the main wheel missing three and a half bolts.


But for the regular docs out there dealing with millions of colds and flues and chest infections, and ear infections, I don't begrudge you, you are working a hard job and it's so very repetitive. I would also be going to the most obvious answer first, but when the patient keeps coming back and back and back, take notice.