There is, of course, a well-known correlation between PMS and migraine headaches. Nobody knows exactly why more women than men get migraines, but we know that many migraines are triggered by hormonal shifts, and one of the most common of those cyclic shifts happens during PMS, so many of us dread that monthly week or so when we're most prone to migraine headaches.
I'm no exception. Even if I'm used to having headaches 15-20 days a month, or even more, I know that I'm almost predestined to having them for the few days before my period and during it, and they will be worse than usual. Something nasty to look forward to while I'm already in a great mood.
And I guess it makes a kind of sense. That's when my estrogen levels are at their lowest. By contrast, when I was pregnant, both times, I never had a single migraine headache. I threw up all day, every day, for the whole 7-8.5 months I was pregnant, starting four days after conception. That wasn't much fun, and it's a good indicator that my estrogen upturns hit me fast and furious. But with it came a total reprieve from migraines. Almost, but not quite, makes me long for pregnancy. When I remember the sciatica too, though, I come to my senses.
And no, I can't just do hormone therapy to keep the migraines at bay. In the first place, it's counter-indicated for lupus patients. In the second, even the tiniest mini-pill causes the same morning sickness I have almost immediately after I get pregnant, and that isn't either a comfortable or a socially acceptable alternative. I've baptized every offramp in town and had to assure more than one nice highway patrolman that I haven't been drinking and I really am ok. Funny in retrospect, but not when you're in danger of soiling the man's highly polished boots. He's also more likely to believe me when I look six months pregnant than he would now when I merely look overly thin. The last thing I need is to spend time proving I'm not a DUI.
So my apologies to everyone who crosses my path for another, oh, two to three days.
Have a nice day.
Friday, October 3, 2008
Tuesday, September 30, 2008
New Doctors
The Great Battle For A New Psychiatrist started last January when my clinic "did not renew the contract" of my last one. They pulled out of retirement my previous psych for six months part time, but he wasn't willing to keep working forever, and in that six months, they failed to hire a new doc. So, since June, I've been without a psychiatrist and they haven't hired yet.
As a result, I've been actively looking for someone who is taking new patients and will see me in under six more months. I need prescriptions, and the clinic won't refill things written over six months ago, so this was getting to be a crisis. The last time I took my ADHD son in to see HIS psych for med checks, I asked his psych's office if he was taking new patients. He isn't: he's retiring at the end of the year. But another doc in the office IS. Fine; I scheduled an appointment with him.
I was nervous last week when I went in; I admit it. I have a very long psych history though it isn't very interesting. I take narcs for chronic pain relief, and this doc's intro letter said he likes to treat "the whole patient" not just use meds, so I was afraid that he would start off by trying to take me off my meds.
He didn't, at least in the first 2-hour intake visit, which was supposed to be 75 minutes. However, I had already signed a release for my psych records and in addition, he DID want records from my PCP, my pulmonologist, rheumotologist, and dermatologist! I'm surprised, but it's ok with me. He can check and see if my stories are true; they all are.
Also, over the years I've found that I virtually always have to carry information between my specialists. They don't communicate with each other. If this doc is willing to read my health history, it's that far to the good. I doubt he will (he doesn't know what he's asking for), but if he does, bully for him. What won't work is if he starts second-guessing my other docs.
So we'll see. He's a counselling psych -- an oddity -- but that's ok with me, too. For over a decade I've been limited to 15 minutes every 3 months for med checks, even when I was in crisis. I'd rather have someone I can actually talk to enough to tell him where I really am in this weird process called living. Assuming he doesn't just look at my records and tell me that I need to be on fewer drugs and imagine myself lying on a warm beach, feeling my toes relaxing as I sink into the sand ....
Been there, done that. I need meds, thanks.
Have a nice day.
As a result, I've been actively looking for someone who is taking new patients and will see me in under six more months. I need prescriptions, and the clinic won't refill things written over six months ago, so this was getting to be a crisis. The last time I took my ADHD son in to see HIS psych for med checks, I asked his psych's office if he was taking new patients. He isn't: he's retiring at the end of the year. But another doc in the office IS. Fine; I scheduled an appointment with him.
I was nervous last week when I went in; I admit it. I have a very long psych history though it isn't very interesting. I take narcs for chronic pain relief, and this doc's intro letter said he likes to treat "the whole patient" not just use meds, so I was afraid that he would start off by trying to take me off my meds.
He didn't, at least in the first 2-hour intake visit, which was supposed to be 75 minutes. However, I had already signed a release for my psych records and in addition, he DID want records from my PCP, my pulmonologist, rheumotologist, and dermatologist! I'm surprised, but it's ok with me. He can check and see if my stories are true; they all are.
Also, over the years I've found that I virtually always have to carry information between my specialists. They don't communicate with each other. If this doc is willing to read my health history, it's that far to the good. I doubt he will (he doesn't know what he's asking for), but if he does, bully for him. What won't work is if he starts second-guessing my other docs.
So we'll see. He's a counselling psych -- an oddity -- but that's ok with me, too. For over a decade I've been limited to 15 minutes every 3 months for med checks, even when I was in crisis. I'd rather have someone I can actually talk to enough to tell him where I really am in this weird process called living. Assuming he doesn't just look at my records and tell me that I need to be on fewer drugs and imagine myself lying on a warm beach, feeling my toes relaxing as I sink into the sand ....
Been there, done that. I need meds, thanks.
Have a nice day.
Monday, September 22, 2008
Yummy Pred
I've been in flare now for quite a while, as you know if you've read this blog before and heard me complaining about it.
Last week my rheumie doubled my steroid dosage and told me to call this morning if I didn't feel better. I don't. I've gained four pounds, but I don't feel better.
In fact, I feel like I'm wasting my life away, lying in bed without even wanting to read, mostly thanks to ongoing migraines but partly due to fever and other sx's, too. I don't have the energy to *do* anything, but resent not having accomplished anything at the end of the day, as well. I thought I'd accepted my limitations a long time ago, but when they become more restrictive, I still kick at them.
So I call back today and find out what our next step is. Yet MORE yummy pred? Increasing my chemo dose to what it was when I was first dx'd? (That worked, toxic as it was.) Can't put me back on Plaquenil... so we have limited options. I sure hope my divus doctor thinks of something though, before I lose what's left of my lupie mind. The world is getting tired of my excuses, and I continue to be tired of being tired!
Welcome to flare?
Have a nice day.
Last week my rheumie doubled my steroid dosage and told me to call this morning if I didn't feel better. I don't. I've gained four pounds, but I don't feel better.
In fact, I feel like I'm wasting my life away, lying in bed without even wanting to read, mostly thanks to ongoing migraines but partly due to fever and other sx's, too. I don't have the energy to *do* anything, but resent not having accomplished anything at the end of the day, as well. I thought I'd accepted my limitations a long time ago, but when they become more restrictive, I still kick at them.
So I call back today and find out what our next step is. Yet MORE yummy pred? Increasing my chemo dose to what it was when I was first dx'd? (That worked, toxic as it was.) Can't put me back on Plaquenil... so we have limited options. I sure hope my divus doctor thinks of something though, before I lose what's left of my lupie mind. The world is getting tired of my excuses, and I continue to be tired of being tired!
Welcome to flare?
Have a nice day.
Tuesday, September 16, 2008
Botox For Migraines?
Yes!
An article in the financial section of my newspaper this morning noted that Allergan's stock was up over 11%. The financial market had reacted to news that Allergan had had a positive trial in the use of botox for migraine.
In the trial, the average patient suffered from chronic migraine 15 days per month and experienced both a reduction in number of days per month and in severity of pain per episode with the use of botox injections. As a result, Allergan will be pursuing further testing in order to get FDA approval for the drug as a migraine preventative.
There really aren't very many approved treatments for migraine. There are a lot of drugs used off-label, but surprisingly few drugs approved for migraine prevention or treatment. I know, because I've taken most of them.
I've used botox for years now, and it DOES work. According to my Beverly Hills dermatologist, it actually only works in about 30% of patients on whom he tries it, but for those patients, it is a real godsend. And yes, he believes it is safe: so much so that he injects his son.
I found out about it because I complained about my ever-increasing headaches to my wonderful rheumatologist. I have the best rheumie anyone could want. Around our house, he's referred to as the "divus" (Latin for "divine") doctor. And he referred me to my dermatologist. I drive somewhere around 2.5 hours to see them both. It's worth it.
My derma got into using botox in his practice precisely because it did work on his son. A friend of his, another doctor, had lobbied Medicare to pay for it (successfully) on the grounds that it was cheaper to prevent migraines than to pay for emergency room visits for patients who had frequent, ongoing headaches. When my doctor found what it did for his son, he decided to offer it to his patients. I'm grateful he did.
Botox works for somewhere between 3-6 months on migraines. On me, it's more like 3 months. I know because I keep a headache diary for my neurologist, stating the level of pain I have on a scale of 0-3 morning, noon, and night every day, what medication I use for that pain, and what level of relief I get from it. At the end of the month, I give that month an overall score for pain level. I also note any headache triggers, my cycle, when I get my botox shots, and what preventative drugs I've taken and in what dosages. And I have YEARS of these diaries now.
I can tell that I have the fewest days of migraine pain in the month directly after a set of shots, and the most before a new set of them. My overall pain levels are greatest when my shots are old. Two or three times in the past few years I have missed an appointment with my dermatologist and gone six months between rounds of shots, and that has operated as a sort of control: my number of days with pain definitely increased in months 4-6 and so did my pain intensity.
The logs make it clear that it's worth it to me to go in for the injections. And yes, Medicare pays for it. Medicare gets good value for its dollar, as well, considering that I can also track my E.R. usage when I've had the injections and when I haven't. With injections, I use the E.R. on an average of only three times a year; without them, more than double that. Botox shots cost $300/set of 16 in Beverly Hills. An average E.R. visit for me, including I.V. cocktail of seven drugs, is around $1,300. If the botox saved Medicare ONE E.R. visit, much less 3-4, it would have paid for itself.
For those of you who may be taken in by the advertising for competing products which make a very big deal of "no painful injections" I will say this: I have fibromyalgia and I don't like needles. I also don't particularly like looking like I just walked through a mosquito-infested swamp, which I do for a few hours after my injections. But these shots are NOT painful. I wouldn't get them for fun. Some of them go directly into fibro points. They are uncomfortable. They are not painful. My derma uses a very fine insulin syringe and doesn't take long about it; my entire visit takes about 10 minutes. As soon as the needle is out, the discomfort is over.
I would very strongly recommend checking out a potential dermatologist and making sure that s/he has experience before getting injections. And YMMV. It doesn't work for everybody. Can I swear to you that there can never be any side-effects? Obviously not. But so do the narcs I'd take without the botox to prevent the headaches. So I'll be back in my derma's office on November 10 for more injections.
Have a nice, migraine-free day. And think about buying Allergan. It will be going up when FDA trials are over. :)
An article in the financial section of my newspaper this morning noted that Allergan's stock was up over 11%. The financial market had reacted to news that Allergan had had a positive trial in the use of botox for migraine.
In the trial, the average patient suffered from chronic migraine 15 days per month and experienced both a reduction in number of days per month and in severity of pain per episode with the use of botox injections. As a result, Allergan will be pursuing further testing in order to get FDA approval for the drug as a migraine preventative.
There really aren't very many approved treatments for migraine. There are a lot of drugs used off-label, but surprisingly few drugs approved for migraine prevention or treatment. I know, because I've taken most of them.
I've used botox for years now, and it DOES work. According to my Beverly Hills dermatologist, it actually only works in about 30% of patients on whom he tries it, but for those patients, it is a real godsend. And yes, he believes it is safe: so much so that he injects his son.
I found out about it because I complained about my ever-increasing headaches to my wonderful rheumatologist. I have the best rheumie anyone could want. Around our house, he's referred to as the "divus" (Latin for "divine") doctor. And he referred me to my dermatologist. I drive somewhere around 2.5 hours to see them both. It's worth it.
My derma got into using botox in his practice precisely because it did work on his son. A friend of his, another doctor, had lobbied Medicare to pay for it (successfully) on the grounds that it was cheaper to prevent migraines than to pay for emergency room visits for patients who had frequent, ongoing headaches. When my doctor found what it did for his son, he decided to offer it to his patients. I'm grateful he did.
Botox works for somewhere between 3-6 months on migraines. On me, it's more like 3 months. I know because I keep a headache diary for my neurologist, stating the level of pain I have on a scale of 0-3 morning, noon, and night every day, what medication I use for that pain, and what level of relief I get from it. At the end of the month, I give that month an overall score for pain level. I also note any headache triggers, my cycle, when I get my botox shots, and what preventative drugs I've taken and in what dosages. And I have YEARS of these diaries now.
I can tell that I have the fewest days of migraine pain in the month directly after a set of shots, and the most before a new set of them. My overall pain levels are greatest when my shots are old. Two or three times in the past few years I have missed an appointment with my dermatologist and gone six months between rounds of shots, and that has operated as a sort of control: my number of days with pain definitely increased in months 4-6 and so did my pain intensity.
The logs make it clear that it's worth it to me to go in for the injections. And yes, Medicare pays for it. Medicare gets good value for its dollar, as well, considering that I can also track my E.R. usage when I've had the injections and when I haven't. With injections, I use the E.R. on an average of only three times a year; without them, more than double that. Botox shots cost $300/set of 16 in Beverly Hills. An average E.R. visit for me, including I.V. cocktail of seven drugs, is around $1,300. If the botox saved Medicare ONE E.R. visit, much less 3-4, it would have paid for itself.
For those of you who may be taken in by the advertising for competing products which make a very big deal of "no painful injections" I will say this: I have fibromyalgia and I don't like needles. I also don't particularly like looking like I just walked through a mosquito-infested swamp, which I do for a few hours after my injections. But these shots are NOT painful. I wouldn't get them for fun. Some of them go directly into fibro points. They are uncomfortable. They are not painful. My derma uses a very fine insulin syringe and doesn't take long about it; my entire visit takes about 10 minutes. As soon as the needle is out, the discomfort is over.
I would very strongly recommend checking out a potential dermatologist and making sure that s/he has experience before getting injections. And YMMV. It doesn't work for everybody. Can I swear to you that there can never be any side-effects? Obviously not. But so do the narcs I'd take without the botox to prevent the headaches. So I'll be back in my derma's office on November 10 for more injections.
Have a nice, migraine-free day. And think about buying Allergan. It will be going up when FDA trials are over. :)
Monday, September 15, 2008
Deep Brain Stimulation: hope for treatment-resistant illnesses?
An article appeared in my local newspaper this weekend written by Judith Graham of the Chicago Tribune entitled "Deep brain stimulation offers hope to people with treatment-resistant illnesses". I was intrigued.
Basically, it said that deep brain stimulation is a technique in which doctors drill two dime-sized holes in the skull and guide small electrodes into two brain sites the size of tic tacs or small green olives. A battery pack is then implanted at the base of the skull in the back of the neck, and the electrode locations become the targets of pinpointed electricity. The current from the batteries tamps down brain circuits that are firing abnormally or revs up circuits that are underactive, experts hypothesize.
It is already in use to treat Parkinson's disease, but is in trials for other uses, such as treatment-resistant depression, OCD, epilepsy, traumatic brain injury, Alzheimer's disease, and chronic pain. In some cases, the results are little short of miraculous. One patient had been suicidally depressed for four years before the surgery and now enjoys a depression-free life, but it didn't happen overnight. For the first six months he felt nothing and was devastated. The doctors had to tinker with his implants until they got just the right settings. Then he woke up and realized "the pain, the fear and the anxiety were gone".
I know I could live with that. Deep brain stimulation is still considered a treatment of last resort for those for whom conventional treatments have failed, but in the U.S. that includes approximately 2 million depressed patients per year. It is expensive, costing approximately $150,000 per patient. There are potential side effects, as well, including problems related to medical hardware, brain bleeds or hemorrhages, infections, post-surgery seizures and headaches, pain and severe mood fluctuations, reports suggest. Not something to enter into lightly. But after twenty or more years of suffering, if I had the possibility in front of me of being WELL?
I know I have virtually no shot at being included in a trial because of my other medical conditions ... but I sure would take my chances.
Have a nice day.
Basically, it said that deep brain stimulation is a technique in which doctors drill two dime-sized holes in the skull and guide small electrodes into two brain sites the size of tic tacs or small green olives. A battery pack is then implanted at the base of the skull in the back of the neck, and the electrode locations become the targets of pinpointed electricity. The current from the batteries tamps down brain circuits that are firing abnormally or revs up circuits that are underactive, experts hypothesize.
It is already in use to treat Parkinson's disease, but is in trials for other uses, such as treatment-resistant depression, OCD, epilepsy, traumatic brain injury, Alzheimer's disease, and chronic pain. In some cases, the results are little short of miraculous. One patient had been suicidally depressed for four years before the surgery and now enjoys a depression-free life, but it didn't happen overnight. For the first six months he felt nothing and was devastated. The doctors had to tinker with his implants until they got just the right settings. Then he woke up and realized "the pain, the fear and the anxiety were gone".
I know I could live with that. Deep brain stimulation is still considered a treatment of last resort for those for whom conventional treatments have failed, but in the U.S. that includes approximately 2 million depressed patients per year. It is expensive, costing approximately $150,000 per patient. There are potential side effects, as well, including problems related to medical hardware, brain bleeds or hemorrhages, infections, post-surgery seizures and headaches, pain and severe mood fluctuations, reports suggest. Not something to enter into lightly. But after twenty or more years of suffering, if I had the possibility in front of me of being WELL?
I know I have virtually no shot at being included in a trial because of my other medical conditions ... but I sure would take my chances.
Have a nice day.
Thursday, September 11, 2008
Managing Cyclic Depression
Most people who don't have clinical depression have no idea how totally disabling it can be. It's easy to say "I'm depressed" when what one means is "I'm sad". They're not the same thing -- ask anyone who has ever been truly depressed. Being sad makes you want to cry. Being depressed sucks out your soul, makes you apathetic, makes you want to die, even when you can look at your life objectively and realize that there is no legitimate reason for feeling that awful. I have looked at my doc when I was off my meds because I was pregnant and said "I just want to die and I know there is nothing wrong with my life. But give me my drugs back and in two weeks I will be fine." And I was. That is depression, not sadness.
I have struggled with clinical depression since my childhood, as my parents did before me, and have taken medication for most of the past twenty years. It takes a cocktail of meds to keep me stable and, for the most part, high-functioning and even content. I am a testament to big pharma. Better living through chemicals. I accept this.
I have "severe treatment-resistant cyclical clinical depression", which means basically that I have it badly, that most drugs don't work on me and that that is why it takes a cadre of them to keep me stable, and that my depression gets worse in more or less predictable cycles. In my case, I can almost post on my calendar in advance that I will have a hard time in March-April and around November, and then I'll pull out of it again to some extent. Various psychs have posited the theory that this is SAD (Seasonal Affective Disorder), but that doesn't make sense, since SAD is linked to sunlight deprivation. If it were SAD, I would be, well, sad from October or November when it gets grey UNTIL March or April when it gets sunny again. I would not be fine from December through February while it's grey. Nope: it's cyclical, and those months are my two downward cycles, more or less.
Does anyone know why? Not that I know of, least of all me. I could make up answers, but that's what I'd be doing. I've had these cycles since childhood.
Nobody I've ever met really understands cyclical depression. All they can do is give me drugs to keep me stable and hope those drugs get me through the two worst periods of the year in relative stability, knowing I will still have a bad time of it for a while. The rest is up to me, and since I've had enough practice, I should be good at it, right?
It does actually help that I recognize the onset now and I know what is happening. I know that the SX's will pass in time, and even about when. That puts light at the end of the tunnel, although the end point may seem very far away, and that is hard. It's even hard knowing I'm coming up on one of them. Does that cause it? I don't think so. I got away without this year's March-April cycle completely, but that was unusual.
What can you do when I'm down? If you are another depressive, by all means share that with me if you're willing to, along with your best wishes and coping mechanisms. I will be warmed to know that someone understands how awful it is.
But realize that you don't HAVE to know how I feel to comfort me. On behalf of all truly depressed people everywhere, I beg those of you who have never experienced this not to believe you know "just how it is" because you were really down in the dumps once. I'm sure you felt bad; I'm sorry. But you still don't have a clue. It does NOT help to tell me just to "cheer up and everything will be fine". This makes me unreasonably angry: why would anyone assume that I'm enjoying this and wouldn't change it if I could? I LIKE huddling in my bed all day with suicidal thoughts, dragging myself out just long enough to drive my kids to school and make sure they're fed? Um ... maybe not? Maybe I'm actually doing the best I can just to keep going at all under the circumstances?
If you want to be supportive of me even though you don't understand why I'm like this, don't assume you could handle this better than I am. I'm not exaggerating how bad things are in MY world: that's the nature of the illness. That's my reality. Instead, bring us a casserole so I don't have to cook dinner, offer to bring my kids home from school one day or take them after school one day, pick up milk and bread at the grocery store when I can't make myself get dressed, tell me you love me (that always helps, even if I can't express that it does). But please, tell me you know how I feel only if it's true.
And please, don't judge me. I didn't choose this. I'm not crazy, I'm depressed: there is a difference. This is a disease with an underlying genetic basis which I got from both parents. Unlike them, I seek professional help and I take my meds. It is not a moral issue, and I would not be well if I'd just "have a more positive attitude" or "more self-control". If you wouldn't criticize a diabetic, don't criticize me. I'm doing my best.
To all of my brothers and sisters out there suffering silently, with or without meds, all year, keep fighting. One day they will unlock this, and we will be free.
Have a nice day?
I have struggled with clinical depression since my childhood, as my parents did before me, and have taken medication for most of the past twenty years. It takes a cocktail of meds to keep me stable and, for the most part, high-functioning and even content. I am a testament to big pharma. Better living through chemicals. I accept this.
I have "severe treatment-resistant cyclical clinical depression", which means basically that I have it badly, that most drugs don't work on me and that that is why it takes a cadre of them to keep me stable, and that my depression gets worse in more or less predictable cycles. In my case, I can almost post on my calendar in advance that I will have a hard time in March-April and around November, and then I'll pull out of it again to some extent. Various psychs have posited the theory that this is SAD (Seasonal Affective Disorder), but that doesn't make sense, since SAD is linked to sunlight deprivation. If it were SAD, I would be, well, sad from October or November when it gets grey UNTIL March or April when it gets sunny again. I would not be fine from December through February while it's grey. Nope: it's cyclical, and those months are my two downward cycles, more or less.
Does anyone know why? Not that I know of, least of all me. I could make up answers, but that's what I'd be doing. I've had these cycles since childhood.
Nobody I've ever met really understands cyclical depression. All they can do is give me drugs to keep me stable and hope those drugs get me through the two worst periods of the year in relative stability, knowing I will still have a bad time of it for a while. The rest is up to me, and since I've had enough practice, I should be good at it, right?
It does actually help that I recognize the onset now and I know what is happening. I know that the SX's will pass in time, and even about when. That puts light at the end of the tunnel, although the end point may seem very far away, and that is hard. It's even hard knowing I'm coming up on one of them. Does that cause it? I don't think so. I got away without this year's March-April cycle completely, but that was unusual.
What can you do when I'm down? If you are another depressive, by all means share that with me if you're willing to, along with your best wishes and coping mechanisms. I will be warmed to know that someone understands how awful it is.
But realize that you don't HAVE to know how I feel to comfort me. On behalf of all truly depressed people everywhere, I beg those of you who have never experienced this not to believe you know "just how it is" because you were really down in the dumps once. I'm sure you felt bad; I'm sorry. But you still don't have a clue. It does NOT help to tell me just to "cheer up and everything will be fine". This makes me unreasonably angry: why would anyone assume that I'm enjoying this and wouldn't change it if I could? I LIKE huddling in my bed all day with suicidal thoughts, dragging myself out just long enough to drive my kids to school and make sure they're fed? Um ... maybe not? Maybe I'm actually doing the best I can just to keep going at all under the circumstances?
If you want to be supportive of me even though you don't understand why I'm like this, don't assume you could handle this better than I am. I'm not exaggerating how bad things are in MY world: that's the nature of the illness. That's my reality. Instead, bring us a casserole so I don't have to cook dinner, offer to bring my kids home from school one day or take them after school one day, pick up milk and bread at the grocery store when I can't make myself get dressed, tell me you love me (that always helps, even if I can't express that it does). But please, tell me you know how I feel only if it's true.
And please, don't judge me. I didn't choose this. I'm not crazy, I'm depressed: there is a difference. This is a disease with an underlying genetic basis which I got from both parents. Unlike them, I seek professional help and I take my meds. It is not a moral issue, and I would not be well if I'd just "have a more positive attitude" or "more self-control". If you wouldn't criticize a diabetic, don't criticize me. I'm doing my best.
To all of my brothers and sisters out there suffering silently, with or without meds, all year, keep fighting. One day they will unlock this, and we will be free.
Have a nice day?
Monday, September 8, 2008
Witchcraft and Autoimmune Disease
I was talking to a very old friend this weekend -- a Craft student of mine, in fact. He wanted to know if I'm teaching now. I'm mostly not. The reason isn't obvious, either. It has to do with my autoimmune diseases.
No, they're not contagious. The problem is that they're exhausting. Chronic fatigue is one of the primary SX's (symptoms) of lupus and is a defining SX of fibromyalgia, which, although it is not technically an autoimmune disease (there are no blood markers for it), mimics AI diseases so closely in its SX's that it is often counted among them.
That means I take stimulants all day to function, but by the end of the day, I'm wiped out. Fortunately, if you're Wiccan, you can worship anywhere, anytime, in the middle of a crowded room, and nobody will know. But you can't do most full and new moon rituals mid-day. And even staying awake past dark to do a ritual requires extra rest during the day and extra stimulants for me. Easier in the winter when dark comes earlier. Since my kids are getting of an age to train soon, I'm going to have to figure out an answer to this one.
The diseases have other impacts, as well. Lupus patients have a seven times greater chance than "normal" people of being migraineurs, so my lupus is a contributing factor to my chronic migraines.
As a Ps (priestess), I am supposed to fast before rituals -- something that is likely to trigger a migraine. And because it is, I am absolved from the requirement (we're not inhumane, and we wouldn't want, say, a brittle diabetic fasting), except that I know perfectly well why the rule is there and what a difference it makes whether I do it or not. So I prefer to keep to it and take my chances, which don't always manifest. Or to limit myself to liquids, anyway.
And what if I have a migraine anyway on a ritual day? Fasting includes no sex, alcohol, or drugs beyond prescriptions. Technically, my pain meds are prescriptions, but the point is not to alter consciousness artificially, but to leave it open to magical change during the ritual. You can't do that on Vicodin. So if I'm in pain, ideally I go without pain management, at least for the few hours before the ritual. But if I'm in a lot of pain, I can't concentrate on the ritual. It's a toss-up. I have to make my best call. Again, the disease sneaks in on my magical life.
Nobody ever said life as a chronic pain patient was easy, but probably not that many people are concerned with how it affects their religous lives.
Meanwhile, some very nice people some distance from us have invited our family to rituals at their place, but we have turned down the invitation more often than not because I couldn't stay awake. I enjoy the fellowship. They're even from a cousin tradition to my own. Regrettable, truly.
My friend is right. I should be more proactive. These are my challenges, though, not his. I need to practice what I preach about everything being possible despite these diseases if one is motivated enough...
Guess I need to work on the motivation.
Have a nice day.
No, they're not contagious. The problem is that they're exhausting. Chronic fatigue is one of the primary SX's (symptoms) of lupus and is a defining SX of fibromyalgia, which, although it is not technically an autoimmune disease (there are no blood markers for it), mimics AI diseases so closely in its SX's that it is often counted among them.
That means I take stimulants all day to function, but by the end of the day, I'm wiped out. Fortunately, if you're Wiccan, you can worship anywhere, anytime, in the middle of a crowded room, and nobody will know. But you can't do most full and new moon rituals mid-day. And even staying awake past dark to do a ritual requires extra rest during the day and extra stimulants for me. Easier in the winter when dark comes earlier. Since my kids are getting of an age to train soon, I'm going to have to figure out an answer to this one.
The diseases have other impacts, as well. Lupus patients have a seven times greater chance than "normal" people of being migraineurs, so my lupus is a contributing factor to my chronic migraines.
As a Ps (priestess), I am supposed to fast before rituals -- something that is likely to trigger a migraine. And because it is, I am absolved from the requirement (we're not inhumane, and we wouldn't want, say, a brittle diabetic fasting), except that I know perfectly well why the rule is there and what a difference it makes whether I do it or not. So I prefer to keep to it and take my chances, which don't always manifest. Or to limit myself to liquids, anyway.
And what if I have a migraine anyway on a ritual day? Fasting includes no sex, alcohol, or drugs beyond prescriptions. Technically, my pain meds are prescriptions, but the point is not to alter consciousness artificially, but to leave it open to magical change during the ritual. You can't do that on Vicodin. So if I'm in pain, ideally I go without pain management, at least for the few hours before the ritual. But if I'm in a lot of pain, I can't concentrate on the ritual. It's a toss-up. I have to make my best call. Again, the disease sneaks in on my magical life.
Nobody ever said life as a chronic pain patient was easy, but probably not that many people are concerned with how it affects their religous lives.
Meanwhile, some very nice people some distance from us have invited our family to rituals at their place, but we have turned down the invitation more often than not because I couldn't stay awake. I enjoy the fellowship. They're even from a cousin tradition to my own. Regrettable, truly.
My friend is right. I should be more proactive. These are my challenges, though, not his. I need to practice what I preach about everything being possible despite these diseases if one is motivated enough...
Guess I need to work on the motivation.
Have a nice day.
Subscribe to:
Posts (Atom)