My word! The last time I posted, it was the middle of summer, July 31st! Perhaps the cooler weather will prompt me to return to this blog.
A lot happened in that time, mostly management of my mother’s and my financial and insurance business, something I don’t want to relive.
At this point, I don’t think I have insurance coverage. I’ve become one of those unfortunates who fall under the status “has pre-existing condition”. It’s a big ‘un, too. Wegener’s granulomatosis. Not on the Nebraska Comprehensive Health Insurance Pool list of pre-existing conditions they cover.
Well, there is one form of vascular disease- WG is a vascular disease- on the list, but it relates of arterial issues arising from smoking. Wegener’s granulomatosis isn’t that. Smoking!? And what about these other “pre-existing conditions”? Alcoholism. Attempted suicide. Cancer survivor.
I’m here to tell you, if you are going to have a pre-existing condition in THIS country, the United States of America, it better not be an orphan disease!
“I’m here to tell you…”
That expression crept into my awareness after I first came down with Wegener’s granulomatosis in March or April 2003. Surviving that initial flare, surviving treatment with Cytoxan and Prednisone (the standard treatment for severe cases then and largely now, and known among weggies as the “Toxic cocktail”), that phrase took on new meaning and life.
“I am here to tell you,” I’d say. It wasn’t a given before. I was near death, with lungs and kidneys under assault by my own immune system. “I’m here to tell you,” I’d say. And I meant it!
I. Am. Here. To. Tell. You! I am here to tell you that America’s healthcare system is failing me just now, its insurance side at least, and I hope and pray that my health holds out until the Republican- and insurance company-opposed healthcare reforms phase in or I reach the age where Medicare kicks in, if that will do the trick.
I’m waiting now for a call or an e-mail from BCBS’s local agent to let me know if I am “in” or I am “out”.
If I am “in”, I get to pay too much for less insurance than I had under my company, then COBRA, plans. And be grateful to a healthcare system that values dollars over people, rich people over poor, the advantaged over the disadvantaged, umm… I hear violins!
[“Can Jimmy Stewart return from heaven and play me in the tragic movie I’m playing in my mind. Yes? Oh, good!”]
If I am “out”, I probably will survive. I’ll even set money aside for a rainy day when my body’s auto-immune system runs amok, again, as probability tells me it most likely will before I die of it or its complications.
[I must get to work on that obituary and funeral arrangements. I’m a veteran, so should qualify for a burial by Uncle Sam in the new veteran’s cemetery built on top of an old prairie dog town where I used to watch burrowing owl chicks feed on grasshoppers brought to them by their parents. I’ll like that!]
These will be days of uncertainty, but not days bereft of hope. My faith in God, tempered by this terrible illness, is key to that. That and the fact that God in His infinite wisdom had the good sense to create cats, of which I have one very amusing and companionable specimen, Louie.
I’m here to tell you, that’s Louie in the photo in the super hero suit he’ll wear when he rescues me from this quagmire! Good kitty!
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This is a question. My hubby and I have been married for 11 years. He was diagnosed with Wegener’s about five years before we met. When we met, he was in remission and had been since his first diagnosis. Since we’ve been married, he’s had three flare ups. (They say stress induces flare ups. I can’t imagine marriage causing stress. LOL) Any way, when you have had a flare up, can you tell me your symptoms. He just seems to be draggy all the time. We’re on the upswing of the third flare up now. He seems to be OK for a week and then something gets him down. I’m just wondering what your typical experience is. He’s taking maintenance of methotrexate, prednisone & recently his dr. added septra. Thanks for your imput.
I haven’t had any flares, so I am a bit in the dark other that to say my understanding is they tend to have some or all of the same symptoms of the inititial expression of the disease. If stress induces flares, I should be in full raging WG at this point! I, too feel draggy, which I think is a typical result of deconditioning that comes on through reduced activity, medications, and the disease itself. A person tends to return to remission just a bit beat up, in a “new normal” state, one that may be a notch or two lower than where you started out- or just about the same. Go to the internet to read up on the three drugs and their side effects; ask your husband’s doctor what he or she thinks about the combination and its likely affect on your husband’s physical state; go to http://vasculitisfoundation.org/ and see what they have to say in the section where they list questions for your doctor; have your husband make a list of his symptoms for discussion with his doctor if he feels he might be in a flare that’s ramping up. Let’s see. Oh! The first two drugs suggest you husband’s doctor feels the measureables for a flare still indicate your husband is working toward remission. I’m unfamiliar with Septra (maybe I know it by another name), so don’t know what it does until I look it up. That link to the VF looks wrong. If it doesn’t work, try this one: http//:vasculitisfoundation.org/