A week since Michael Jackson passed, and I have to admit that I'm way more disturbed by it than I was initially. My immediate reaction upon hearing the news, albeit it makes me sound really cold, was "good riddance." I'm quite familiar how "inappropriate behavior" can influence a lifetime of choices and decisions. I'm also quite aware of how he has influenced Pop music and Pop Culture. He was a force somewhat akin to the Beatles and Elvis... more than just the music that he produced. But to my mind, that does not mitigate using individual power and influence to take advantage of innocents.
In the week of incessant press that followed his death, I've read some of it; watched some of it. Most of it is the news agencies creating their own news by engaging in rumor, speculation, and innuendo to drive their own needs, and few facts have actually come forth. But there was one report in the Huffington Post that caught my eye and has tortured me since reading it. In it, they disclosed that MJ had Lupus.
I know a little bit about Lupus. I know a little bit about Auto Immune diseases in general. They have ruined my life as I had planned it in my youth; I'm unable to sustain enough energy or health to work at a regular job; medically I'm un-insurable without outside help, so I'm not able to pursue more unorthodox methods of bringing in income in any significant way. But what I talk about very little is the pain. And there is a lot of it. Continuous, unremitting pain at various decibels over time. Sometimes at a level that I can work through and even appear perfectly normal, while at other times, I'm incapacitated. Even those who see me a lot (like at Slimmons) don't generally understand the depth of what is happening, and frankly, it's not something that I care to discuss. The only people who really understand the implications of Auto Immune Disease are other afflicted people.
A lot of the speculation as to the cause of his death was drug abuse. There is ongoing discussion of excessive pain medications housed in his home, reports of him being so affected by it at times that he was unable to function, countered by others that he was obsessed by healthy living and choices. I can't help but personalize this topic. If you were to go through my medicine chest (well, actually, all over my home), you'd find a cornucopia of medications that would make your heart beat faster. Pain meds... Darvocet, Percocet, Neurontin, Ultram, Celebrex, Vicodin, and many many others. Sleep meds and mood stablizers... Ambien, Klonipin, Xanax, Valium, Prozac, Zoloft, Lyrica, and many others. Asthma/Restrictive lung Disease meds... Advair, Spriva, Albuterol, Singular, and others... Hormone replacement meds, Steroids, BP medications. Antibiotics of all sorts. Massive quantities of syringes and accompanying injectables in my refrigerator as well as my cabinets. I will give you that all of the prescriptions are written under my name so I am not and have never tried to hide any of this. But does the possession of this quantity and assortment of drugs make me a drug addict?
I can imagine what, if I were famous and the press were following my death, what would be said about me. You'd see officials carrying out medications in big bags, just like they are filmed doing at MJ's Holmby Hills home. "How could she have built up such a supply and assortment of drugs? Who would prescribe all of that to her? She must be an evil drug abuser!"
Nothing could be farther from the truth. I hate the medications that I am forced to keep in my home. I hate that I have to take them. I hate that there is such a build-up, and many of them have not been opened in a year or more, but I'm afraid to throw them out for fear that I will need them and not have immediate access when I do.
The nasty truth about autoimmune disease is that you never know where it is going to strike you next, or how it is going to manifest. Pain Meds that are effective when I am suffering from Fibromyalgia are not when I am having severe Crohns cramps. Lupus and arthritis pains require something else. Sometimes I'm not sure which of my conditions are causing what, so I may have two or three on my nightstand at any given time.
Auto Immune suppressants rotate in my home too. Sometimes one thing is effective for a while, and then it stops working, so I move on to something else. Then something else and something else and something else and eventually usually come back to the old medication again. All under doctor's instructions.
My sleep is effected by my disease process along with my mood. Those closest to me know that I've been complaining for weeks about something "being in my brain." I can't focus, I can't organize, and I'm certainly not getting a lot of sleep. Rest is critical for Auto Immune patients, and my doctors have not only been cooperative, but have encouraged the use of certain sleep agents to allow me the maximum amount possible (maybe 3 to 5 hours a night as of late).
Am I a drug addict? Or am I responding to an unremitting and unbearable medical situation that there is no cure for? My friends and doctors, knowing me and my attitudes and habits, would strongly endorse the latter. I know the latter to be true. But that doesn't mean that I am not, on occasion, stoned out of my mind in an attempt to get some relief. How would unfamiliars view me? I fear I know.
So now we come back to Michael Jackson. The man had Lupus. I didn't know this until I read the report. What formerly seemed eccentricities all of a sudden make perfect sense. The umbrella and the hats? That's about Lupus. Sunlight makes the flares much worse. The mask? Probably about autoimmune vulnerabilities. The glove? He turned it into a fashion statement. Now that I think about it, though, how much do you want to bet that there was some kind of support going on under it that he had the right to keep private?
The massive amounts of prescription medications in his home? Of all the unfavorable reports we've heard about MJ over the years, drug abuse was one that was not one that was circulated. His inner circle clearly knew that he was imbibing excessive amounts, but they also likely knew the extent of his medical issues and, as things got worse, they understood what he was doing and why.
Certainly I do. Lupus shuts down organs; it burns muscle, it swells veins, it immobilizes joints, and it messes with your mind.
I do not have nor do I have the access to the kind of medications that MJ purportedly held in his home. I don't have the financial wherewithal to get them, nor do I have the influence. On the other hand, I do not have the same kind of commitments that the man had either. He was about to launch a very public come-back. (Stress makes auto immune issues flare so much worse.) He, unlike me, did not have the option of backing down if issues of body became unbearable. He absolutely had to move on no matter how his body was revolting; no matter how much pain that was not visible to the uninitiated-to-lupus-crowd might notice. He certainly needed his meds in a much more immediate way than I, and I understand unbearable pain. I understand trying to keep face when my body is failing me. (I was recently told by somebody close to me to get over the pity party because I was no longer able to put on the show... I suppose that person was not used to me not being able to cope with the ramifications of my illness.)
So where does that leave me regarding MJ? I do personalize the situation. I can't help it. I, to some extent, know the hell of not being able to depend on anything, not even one's own body.
Do I endorse the hospital-quality meds that he was purportedly taking? I'm keeping an open mind. I do not think he was suicidal at all; rather, I think he was trying to get relief from unremitting pain. Pain that nobody recognized or understood. The kind of symptoms that they think you're crazy for having, and nobody will do business with you if they do understand.
Do I forgive him for 'inappropriate behavior' if it was true? And I do believe it.
No. I can never forgive that kind of thing. But I'm starting to think he paid his penance for it. Auto Immune is the kind of hell that nobody, and I mean NOBODY deserves, no matter what they may or may not have done.
And, for the record, there have been times that if I had been able to lay my hands on the kind of meds that MJ purportedly took, I'd grab them up in a minute. I am not a drug addict. I get no pleasure from any of my prescription medications. But I do understand what it is to hurt.
Saturday, July 4, 2009
Friday, June 26, 2009
Wednesday, June 24, 2009
Friday, June 19, 2009
Scratching the Surface
One of my doctor's appointments was with the Eye Doctor. That happened yesterday afternoon late. I've been very concerned as my sight seemed - even wearing my prescription glasses... especially when wearing my prescription glasses - to be diminishing at a very rapid rate. I had mentioned this to other doctors who had reacted with cautious alarm. After all, Cimzia is an anti-TNF medication. Permanent eye sight loss is a risk when taking it.
So upon arrival, the usual protocol ensues. The nurse (or whatever she is) came into the room and had me read the eye chart with my glasses on. I couldn't see it! This, of course, confirmed my worst fears. Yes, she admitted, there is a sharp decrease in function since last year. She'll call Dr. Katzin in now to see me.
Dr. Katzin is a very nice man with whom I barely have a relationship. My eyes, fortunately, have not been much of a problem other than standard middle-aged deterioration, so I'm on a once-a-year rotation with him and this was only my second visit ever.
So he comes in and has me put my head into the usual device. "Read the letters. Is the image sharper with this lens or with that? With this one or with that one?" i answered the questions dutifully, and soon he pronounced that my eyes had not changed much at all over the last year. "Very good!" he said.
"But I can't see!" I replied. What about the fact that I can't see much of anything even when wearing my glasses. And he admitted that there was a sharp delineation between the results of his test and that of what his nurse had recorded. "Let me see your glasses" he replied.
He put them under some kind of microscope and peered into it. And then turned to me in surprise. "These glasses are more scratched up than any pair I've ever seen in my career!" he exclaimed. "What on earth have you been doing to them? No wonder you can't see!!!!"
I just shrugged. "I'm kind of hard on stuff."
And so the mystery of my dimming eyesight was solved. After I was dismissed, which was quickly, although not until I had the standard dilation, I went across the street to "Cedars View Optics" and ordered new glasses.
So upon arrival, the usual protocol ensues. The nurse (or whatever she is) came into the room and had me read the eye chart with my glasses on. I couldn't see it! This, of course, confirmed my worst fears. Yes, she admitted, there is a sharp decrease in function since last year. She'll call Dr. Katzin in now to see me.
Dr. Katzin is a very nice man with whom I barely have a relationship. My eyes, fortunately, have not been much of a problem other than standard middle-aged deterioration, so I'm on a once-a-year rotation with him and this was only my second visit ever.
So he comes in and has me put my head into the usual device. "Read the letters. Is the image sharper with this lens or with that? With this one or with that one?" i answered the questions dutifully, and soon he pronounced that my eyes had not changed much at all over the last year. "Very good!" he said.
"But I can't see!" I replied. What about the fact that I can't see much of anything even when wearing my glasses. And he admitted that there was a sharp delineation between the results of his test and that of what his nurse had recorded. "Let me see your glasses" he replied.
He put them under some kind of microscope and peered into it. And then turned to me in surprise. "These glasses are more scratched up than any pair I've ever seen in my career!" he exclaimed. "What on earth have you been doing to them? No wonder you can't see!!!!"
I just shrugged. "I'm kind of hard on stuff."
And so the mystery of my dimming eyesight was solved. After I was dismissed, which was quickly, although not until I had the standard dilation, I went across the street to "Cedars View Optics" and ordered new glasses.
Wednesday, June 17, 2009
Where Have I Been?
Where have I been? Why haven't I been blogging? I'm starting to get questions about my status via e-mail and phone messages, so I'm sitting down to write briefly right now.
Something is happening to me that's imparing my mental/emotional ability to focus. I feel like I'm having an intellectual slip, but it's, according to my Therapist, more likely physical in nature and easily treatable.
I'm doing crazy things like leaving my home and driving over the hill without my purse, putting things down where they don't belong, and then not being able to find them. Losing things... a beaded purse and a beaded bracelet - both very expensive items - out of my inventory of finished product. And not just lost in my home where I'll find them. Lost in public places when I shouldn't have brought them along in the first place.
I'm unable to sustain any kind of food or exercise program, even as I know what I should be doing as I deviate.
The craziest part of all of this is that I can't seem to get off the mark with most of my projects, but when I finally do get something done, the final outcome is still up to my normal standards. Like I said, it's nuts.
My appointments with doctors over the next five days are numerous. One today. Two tomorrow. Another next Monday and yet another next Tuesday. Dr. M-, my Therapist, has agreed to take an active role as advocate during this round of appointments to be sure that they are not only taking my complaints seriously, but don't write me off as a mental case. And he's also going to ensure that they are talking to each other.
With all of this going on, something had to give, and I chose to let it be my blog. Sorry. I'll be back, and hopefully soon. And I have so much to tell you about.
1.) My new hair.
2.) My new make-up.
3.) My garden make-over (very much still in progress).
4.) My dogs - who are both still with us, thank you for caring.
5.) My diet, or lack thereof.
6.) The Slumber Party of 4 (the miniature Fab 4, so to speak) that I had at my home a couple of weeks ago.
7.) Miles's Birthday Party and Inky the Squid.
8.) Breathing Helium.
9.) Warner Center Concerts in the Park
10.)My jewelry, and whole new classes of product that I'm making.
So you see, it's not for lack of intent or subject matter. But for now, please bear with me. I'm doing the best I can, but I have to take care of myself first and foremost, and definitely before the Blog.
Something is happening to me that's imparing my mental/emotional ability to focus. I feel like I'm having an intellectual slip, but it's, according to my Therapist, more likely physical in nature and easily treatable.
I'm doing crazy things like leaving my home and driving over the hill without my purse, putting things down where they don't belong, and then not being able to find them. Losing things... a beaded purse and a beaded bracelet - both very expensive items - out of my inventory of finished product. And not just lost in my home where I'll find them. Lost in public places when I shouldn't have brought them along in the first place.
I'm unable to sustain any kind of food or exercise program, even as I know what I should be doing as I deviate.
The craziest part of all of this is that I can't seem to get off the mark with most of my projects, but when I finally do get something done, the final outcome is still up to my normal standards. Like I said, it's nuts.
My appointments with doctors over the next five days are numerous. One today. Two tomorrow. Another next Monday and yet another next Tuesday. Dr. M-, my Therapist, has agreed to take an active role as advocate during this round of appointments to be sure that they are not only taking my complaints seriously, but don't write me off as a mental case. And he's also going to ensure that they are talking to each other.
With all of this going on, something had to give, and I chose to let it be my blog. Sorry. I'll be back, and hopefully soon. And I have so much to tell you about.
1.) My new hair.
2.) My new make-up.
3.) My garden make-over (very much still in progress).
4.) My dogs - who are both still with us, thank you for caring.
5.) My diet, or lack thereof.
6.) The Slumber Party of 4 (the miniature Fab 4, so to speak) that I had at my home a couple of weeks ago.
7.) Miles's Birthday Party and Inky the Squid.
8.) Breathing Helium.
9.) Warner Center Concerts in the Park
10.)My jewelry, and whole new classes of product that I'm making.
So you see, it's not for lack of intent or subject matter. But for now, please bear with me. I'm doing the best I can, but I have to take care of myself first and foremost, and definitely before the Blog.
Saturday, June 6, 2009
A New Computer!
Yes, it's finally happened... Eric installed my new computer! Never mind the fact that I've just jumped about 8 years in software and technology. Never mind the fact that I don't have a clue how to open up the files from my old computer (piggybacked onto the new) nor can I figure out a myriad of other issues that are sure to turn out to be as simple as can be.
I open it, it opens. I type on it, it types! I search for a new web page, and OMG! it's there is seconds instead of minutes (or hours)!
The rest will work itself out for sure. I only hope that I can figure out how to get to my food sheets before I forget all the good (and bad) choices I've made since last evening.
I open it, it opens. I type on it, it types! I search for a new web page, and OMG! it's there is seconds instead of minutes (or hours)!
The rest will work itself out for sure. I only hope that I can figure out how to get to my food sheets before I forget all the good (and bad) choices I've made since last evening.
Thursday, June 4, 2009
Are Foot Issues Social Diseases?
I didn't really want to go to the Podiatrist. Yes, I knew I was in trouble and the issue was escalating, but in my world, getting diagnosed with yet another issue is frustrating, especially because a lot of things can't be treated (read both knees still need surgery but I'm not medically cleared for anything even remotely elective) and what's the point of finding out yet more is wrong?
But Claudia was in a funk about her Plantar Faciatis and to induce her to do the right thing and get it seen and hopefully treated, I suggested that if she make an appointment with her Podiatrist, I would do the same here. I knew that my Neuroma was bothering me again (that wasn't supposed to be an issue ever again after the surgery), and that I thought I was getting heel spurs too. So what the hell? If it would get Claudia to get her issues looked at, I could stand to go through some X-rays and maybe get a shot of Cortisone in my Neuroma and maybe even some new Orthotics. I could deal.
But I should have known from Claudia's way more devastating diagnosis that it portended bad things for me too, and canceled the appointment. I didn't. I went in like a trooper because we "fucking agreed" and made my report to Dr. Kahlor - who is still absolutely gorgeous and glamorous and thin even though she just had a baby... the bitch. And she's smart and nice too. That makes me hate her even more, even as I can't help but like her. A lot.
Well, the Neuroma has grown back. Unusual, but not unheard of. Then we did X-rays. Guess what we found? Heel spurs, but also Planter Faciatis in my left foot, and Planter Faciatis / borderline Tarsal Tunnel Syndromein my right. I haven't said much to anyone about my foot pain up until now (dealing with knee and hip stuff which I also don't discuss much) but now I get to complain just a little. Ok?
This morning, I had two cortisone shots in my right heel. I had one cortisone shot in my left heel. I had one Alcohol shot in my left foot between the third and fourth toes. I was given great big giant boots which I get to strap on and wear "when I'm watching TV and when I'm sleeping." And I get to repeat the entire injection process in two weeks, and then again every two weeks for a maximum of 10 shots.
If what I has does not resolve, I am a candidate for surgery. Yeah, right. I'll schedule it right after I schedule the surgery for my right knee and then my left knee, both of which were deemed necessary about 18 months ago if I am ever cleared medically to have them.
Claudia, I'm screwed too. And now I'll admit it. I can't deal. I just can't deal
But Claudia was in a funk about her Plantar Faciatis and to induce her to do the right thing and get it seen and hopefully treated, I suggested that if she make an appointment with her Podiatrist, I would do the same here. I knew that my Neuroma was bothering me again (that wasn't supposed to be an issue ever again after the surgery), and that I thought I was getting heel spurs too. So what the hell? If it would get Claudia to get her issues looked at, I could stand to go through some X-rays and maybe get a shot of Cortisone in my Neuroma and maybe even some new Orthotics. I could deal.
But I should have known from Claudia's way more devastating diagnosis that it portended bad things for me too, and canceled the appointment. I didn't. I went in like a trooper because we "fucking agreed" and made my report to Dr. Kahlor - who is still absolutely gorgeous and glamorous and thin even though she just had a baby... the bitch. And she's smart and nice too. That makes me hate her even more, even as I can't help but like her. A lot.
Well, the Neuroma has grown back. Unusual, but not unheard of. Then we did X-rays. Guess what we found? Heel spurs, but also Planter Faciatis in my left foot, and Planter Faciatis / borderline Tarsal Tunnel Syndromein my right. I haven't said much to anyone about my foot pain up until now (dealing with knee and hip stuff which I also don't discuss much) but now I get to complain just a little. Ok?
This morning, I had two cortisone shots in my right heel. I had one cortisone shot in my left heel. I had one Alcohol shot in my left foot between the third and fourth toes. I was given great big giant boots which I get to strap on and wear "when I'm watching TV and when I'm sleeping." And I get to repeat the entire injection process in two weeks, and then again every two weeks for a maximum of 10 shots.
If what I has does not resolve, I am a candidate for surgery. Yeah, right. I'll schedule it right after I schedule the surgery for my right knee and then my left knee, both of which were deemed necessary about 18 months ago if I am ever cleared medically to have them.
Claudia, I'm screwed too. And now I'll admit it. I can't deal. I just can't deal
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