Here's to more than 30.
In about a month I celebrate my eighteen year anniversary. What's that, say you? Clearly, no for marriage . . . that would have put me hitched at sixteen. Since I am still flying single and solo I am certainly not hitched. For sobriety? Um, really? I like whiskey. Jack, to be exact. Never Beam as it always makes me hurl; remembered that the last trip to N'Orleans too late. Jameson on occasion, usually in a rare sexy, lonesome,and solitary kind of mood. Maker's only in a pinch, on account of a weekend in college. Evan Williams never, as I think it tastes like rot-gut ass. Okay, okay enough with the whiskey diatribe. I celebrate eighteen years of having been diagnosed Lupus; though I doubt you really call this plight a celebration. More so, notice I said "having been diagnosed." Yea, Lupus always manifests before diagnosis. In my case, I was thirteen and contracted Lymes Disease, did a stint in the hospital, saw the light, came back, and then I never really recovered. Why? Because the Lupus factor of my gene pool took over.
As I've said before, and in that article I wrote two years ago, there is no concrete genetic base for Lupus. There is a one in four chance of family members having it. Sister Redempta is her name, and maybe some other time I'll converse about encounters of the spiritual and supernatural kind I have with her. Though, now I will tell you that before joining the church Sister was known as Genevieve. My Momma wanted to name me Jennifer, but my Dad won the race to the birth certificate. Hence, Jennifer has become a cursed name in family folklore.
Now that you have the humor, here's the point du jour. _The View_ will be having another discussion on Lupus today. For real. They had one about a week or so ago too. Interesting to say the least. It has been more than fifty years since the FDA approved new medications specifically for the treatment of Lupus. Eisenhower was still president. I shit you not. That is a long time to wait. Too long. Yea, folks like me have benefited from newer drugs, but none of these are specifically targeted for the treatment of Lupus. Why? Well . . . Lupus research isn't as glamorous as cancer and there's no known cause or cure for Lupus. You can't take an x-ray of someone and point to an irregular blob and say "there's your Lupus." You also can not stick a needle, or two or three, into a vein and analyze the red goo. Yea, analyze that red juice all you want and all you can do is give an educated guess on Lupus based on a battery of tests. Lovely. Then, patients like me have bizarre numbers. Very literally, depending on the direction of the wind determines if I have high or low numbers and so forth.
Most Lupus patients, or at least those active with their care and keen with their body, will tell you that numbers don't even tell half of the story. When you wake up in the middle of the night, or afternoon, dizzy and collapse back into a fitfull sleep there is usually something going on. Particularly if you find yourself drenched in sweat. You have the eyes of vampires with their slinky blood shot lines, and your purple colored skin would make most ER docs and members of the poe poe think that you've got an abusive other half. Your joints ache as you climb the stairs. Your chest hurts because you've got some kind of pleurisy going on. It hurts to breathe. Your head hurts. You are puffy and bloated. You wear an extra layer, or two, of makeup to cover the damned butterfly rash on your face. On that same note, when you are covering your flaming red rash you once again do not see the humor, dignity, or sense in calling it a butterfly rash. It is just fucking ugly, a constant reminder that your life is not normal and can not be.
So _The View_ showcasing Lupus does my jaded and hardened heart good. It's about damned time Lupus gets more attention. It's about damned time that folks know what the butterfly and purple ribbon stand for. It's about damned time Congress got off of its ass and pushed for deeper research. It's about damned time the FDA got off of its ass and tested more Lupus drugs. Lupus patients are disproportionately female, and I have a hunch that if Lupus affected mostly males--particularly their penises--there would be substantial research, drugs, and known causes by now.
On a different Lupus note, in May a family friend died from complications of Lupus. He was sixty-four. Yes, sixty-four. Needless to say, I have been freaked out about it since. Why? Go look up the average age of Lupus patients and life spans. My stats do not fit the normal realm, as I was diagnosed in my teenage years. The stats are all over the place, saying survival rate is 90 percent after five years. Here's the thing, Lupus can't be quantified in the same ways that cancer can. Lupus patients have flares and remissions. From what I can gather average life is thirty or so years after onset/diagnosis, and most patients go sometime in their young sixties. Do my math. See the issue? Not to mention I haven't had health insurance in two years, I know my history, I know my hospitalizations--or when I should have been in but refused--and issues thereof, I know I beat the odds once, and I know my body.
In September I will be the proud holder of health insurance, once again. I plan on the seeing the doctor the day it does into effect. Ending the two year dance of no insurance will be a sweet relief. Until then, let's just hope that this disease I try to ignore, forget about, and talk into submission cooperates. I am certain drugs will be coming my way, as my face could suit the sideshow at Coney Island on most days, the purple shots of bruises appear seemingly in my sleep, signs of anemia don't subside with the intake of iron pills (which really do taste worse than sucking on rusty nails), and I've been pretty good at the flow of my body's ills. I would like to run more, but I'm so tired these days. I also know . . . I am essentially on borrowed time for awhile more. More so, here's hoping that I've got more than twelve to thirty years left.
As I've said before, and in that article I wrote two years ago, there is no concrete genetic base for Lupus. There is a one in four chance of family members having it. Sister Redempta is her name, and maybe some other time I'll converse about encounters of the spiritual and supernatural kind I have with her. Though, now I will tell you that before joining the church Sister was known as Genevieve. My Momma wanted to name me Jennifer, but my Dad won the race to the birth certificate. Hence, Jennifer has become a cursed name in family folklore.
Now that you have the humor, here's the point du jour. _The View_ will be having another discussion on Lupus today. For real. They had one about a week or so ago too. Interesting to say the least. It has been more than fifty years since the FDA approved new medications specifically for the treatment of Lupus. Eisenhower was still president. I shit you not. That is a long time to wait. Too long. Yea, folks like me have benefited from newer drugs, but none of these are specifically targeted for the treatment of Lupus. Why? Well . . . Lupus research isn't as glamorous as cancer and there's no known cause or cure for Lupus. You can't take an x-ray of someone and point to an irregular blob and say "there's your Lupus." You also can not stick a needle, or two or three, into a vein and analyze the red goo. Yea, analyze that red juice all you want and all you can do is give an educated guess on Lupus based on a battery of tests. Lovely. Then, patients like me have bizarre numbers. Very literally, depending on the direction of the wind determines if I have high or low numbers and so forth.
Most Lupus patients, or at least those active with their care and keen with their body, will tell you that numbers don't even tell half of the story. When you wake up in the middle of the night, or afternoon, dizzy and collapse back into a fitfull sleep there is usually something going on. Particularly if you find yourself drenched in sweat. You have the eyes of vampires with their slinky blood shot lines, and your purple colored skin would make most ER docs and members of the poe poe think that you've got an abusive other half. Your joints ache as you climb the stairs. Your chest hurts because you've got some kind of pleurisy going on. It hurts to breathe. Your head hurts. You are puffy and bloated. You wear an extra layer, or two, of makeup to cover the damned butterfly rash on your face. On that same note, when you are covering your flaming red rash you once again do not see the humor, dignity, or sense in calling it a butterfly rash. It is just fucking ugly, a constant reminder that your life is not normal and can not be.
So _The View_ showcasing Lupus does my jaded and hardened heart good. It's about damned time Lupus gets more attention. It's about damned time that folks know what the butterfly and purple ribbon stand for. It's about damned time Congress got off of its ass and pushed for deeper research. It's about damned time the FDA got off of its ass and tested more Lupus drugs. Lupus patients are disproportionately female, and I have a hunch that if Lupus affected mostly males--particularly their penises--there would be substantial research, drugs, and known causes by now.
On a different Lupus note, in May a family friend died from complications of Lupus. He was sixty-four. Yes, sixty-four. Needless to say, I have been freaked out about it since. Why? Go look up the average age of Lupus patients and life spans. My stats do not fit the normal realm, as I was diagnosed in my teenage years. The stats are all over the place, saying survival rate is 90 percent after five years. Here's the thing, Lupus can't be quantified in the same ways that cancer can. Lupus patients have flares and remissions. From what I can gather average life is thirty or so years after onset/diagnosis, and most patients go sometime in their young sixties. Do my math. See the issue? Not to mention I haven't had health insurance in two years, I know my history, I know my hospitalizations--or when I should have been in but refused--and issues thereof, I know I beat the odds once, and I know my body.
In September I will be the proud holder of health insurance, once again. I plan on the seeing the doctor the day it does into effect. Ending the two year dance of no insurance will be a sweet relief. Until then, let's just hope that this disease I try to ignore, forget about, and talk into submission cooperates. I am certain drugs will be coming my way, as my face could suit the sideshow at Coney Island on most days, the purple shots of bruises appear seemingly in my sleep, signs of anemia don't subside with the intake of iron pills (which really do taste worse than sucking on rusty nails), and I've been pretty good at the flow of my body's ills. I would like to run more, but I'm so tired these days. I also know . . . I am essentially on borrowed time for awhile more. More so, here's hoping that I've got more than twelve to thirty years left.
Comments