So, you've just been informed, maybe after countless doctors appointments, maybe after one faithful trip to the ER, that you have this rare disease that can cause life ending damage to your internal organs if you don't keep an eye on it. This is the moment where you decide that maybe that's not a good thing and it's something that you should get on top of as soon as possible. I mean, no one (well, maybe that one person has, cause there always has to be one) has said that end stage organ failure is on the list of things they want to do before they die.
Then, maybe you start thinking, 'Well, I'm not a doctor, how do I know my livers and spleens and kidneys and lungs and harpsichords and whatever else is inside me is being damaged?' Just as a forward note, you won't notice your kidneys going until they have packed their bags and have all but left the building; they don't hurt. You might get a hint if your, pardon, urine is particularly pale or foamy, but that can also be caused by drinking lots of water. Sometimes you'll get visible blood which is a sign that you need to head to the nearest person with needles and a stethoscope, but rest assured, you won't know it's your kidneys doing this to you. It could be a bladder or urinary tract infection. I had one of those recently, in the bladder, lots of blood and more pain than anything I've had with my kidneys (kidneys that the doctor was surprised weren't failing because of how much damage there was).
But, back to the original point. You are not a doctor, so you might need some help in monitoring these things that are inside you and make life so very livable.
Enter the specialists. As a Weggie (I wonder if we should come up with something new to call ourselves, as our disease has had a name change after all) I need help with all the areas that my disease has effected. I've mentioned my ENT before, he only looks at my ears, nose/sinuses and throat. This is what he does. He fixes any scars that come and can give me tips on trying to keep these parts of me healthy.
I also see a pulmonologist. This lovely lady is the one who actually got me into full blown treatment for Wegner's. Really, though, she takes care of my lungs. I get chest x-rays whenever I go in and she is helping me to prune the little tree growing in my airbags. She helps me keep my breathing in check with all her fancy inhalers and oxygen monitors and tips about keeping allergens down and preventing an asthma attack or working through one if I'm stuck without my inhaler. Mostly she just impresses upon me that I need to keep the inhaler on you I swear...
Of course, I also see a rheumatologist. Now, this one can be a little tricky. You can't just go see any rheumatologist, but you have to see one that specializes in vasculitis. Many of them don't. But you need to have one.You are more likely to find these special breeds of doctors near big medical and research centers such as John Hopkins or the Mayo Clinic. I lucked out, again, in that mine are relatively close to my house, are very knowledgeable and I didn't have to search for them. They are connected to Intermountain Medical, but are not entirely dependent on them so my insurance will cover me going there.
Many other people with Wegner's see a renal specialist so that their kidneys can be monitored. I do not, mostly because my rheumatologist shares his office with a kidney specialist so they can consult right there. Lucky me again, I have one stop shopping in this area.
You'll also probably need a GP. I must stress though that you need a good GP. One that doesn't mind taking a backseat to the specialists. I am currently struggling in this area. My GP that I've had for many, many moons, from back when I was only so high has trouble dealing with my condition. I have gone to him before, experiencing sinus activity (this was post diagnosis which he was aware of) I mentioned that since I started treatment for my Wegner's I have had MRSA before (for those that don't know, MRSA is an anti-biotic resistant staff infection that can turn into flesh eating bacteria if left unchecked) and I thought that this was the same thing. It looked and felt the same and is a known risk for people on immunosuppressant drugs specially those that work in a high risk area (I have mentioned before that I work with pre-kindergarten kids, right?). He didn't even check me for it, just blew off my concerns, gave me an antibiotic that didn't work and when I went in to see the ENT two weeks later was diagnosed with MRSA... again. Currently, I am looking for a new GP, possibly one that is an internist.
Don't be afraid to try out some new agey things either. I have heard some vasculitis patients describe acupuncture as something that helps them a lot. I haven't tried it, yet, you need funds for things like that. Massages can work wonders (also something I can't afford to do), yoga and meditation help a lot as well. Part of vasculitis is triggered by stress, so anything you can do to keep stress free will probably help. Some supplements will be good too, just don't go for things that are supposed to boost your immune system. As my rheumatologist told me, your immune system is the problem, the treatments are supposed to suppress it, what would be the point of doing something to boost it?
Granted, I am no doctor. I am only a patient. A fairly new patient at that. If your doctors have told you something different certainly listen to them over me!