It happens to all of us sooner or later. That nagging, insistent pressure in your forehead, or just behind the eyes, or sometimes in the top of your head.
Maybe not a full blown migraine. Those are blessedly rare (whether sufferers can believe it or not). But even a run of the mill headache can be miserable.
If you have no food intolerances, your course of action is simple. Head to your cupboard, or check your purse. If you're out of pain killers, simply ask if anyone around you (preferably work or social friends) happens to have any Tylenol or Motrin. Choose from the assortment offered.
If you are sensitive to some ingredients, simply head to the corner store any hour of the day or night. They won't even check your ID. Choose from an entire display case full of extra strength, migraine, tension, PM, non-drowsy and many other variations of a formula for pain relief. Read ingredients, choose what's appropriate, and you'll be out of their in under $10. Even if you have a dye allergy, there are a few options available. The most obvious are the dye free liquids for the 6-12 year olds, but there are a couple adult configurations as well.
However, if you have a corn allergy, things get sticky. If you've run out of your supply of safe meds, or it's your first headache since starting this journey, you need to start at the beginning. Contact your medical doctor. Weird, I know. But it's the vital first step in the process of obtaining the simple, Over the Counter variety of pain relief the rest of America pops daily without inhibition. You need to obtain a prescription that reads (your choice of pain killer, acetaminophen or ibuprofen) NO CORN DERIVATIVES. Then you need to contact your local compounding pharmacy. Or one that will work mail order with you, suck as Francks. Ascertain that they are capable of obtaining the pure, unadulterated drug of your choice. (There are a few compounding pharmacies that start with the ready made pills and just adapt them. You want to avoid these pharmacies.) Ensure that they understand what corn free entails (and that they believe microcrystalline cellulose can be derived from corn rather than always from trees) Then drop off or fax in your prescription.
In a few days to a week, you should be able to pick up safe pain killers. The exact same dosage and active ingredient as the ones available at any drug store or supermarket, for only a few times the cost.
It doesn't seem fair sometimes. To keep an eye on the expiration date, and budget for a $100 bottle of something that so many can purchase for a 10th of the price. To think and plan in advance, second guessing flu season and headaches and menstrual woes. But, then I take one.
Fortunately, the trade off of having meds that will kill off a headache at it's start is priceless.
(And companies...if you stumble on this...we'd love more 'pure' options. No dye. No gluten, lactose, or corn. Including microcrystalline cellulose. We don't mind the less polished looking capsules, or paying a little extra for something with a shorter shelf life and fewer ingredients. And although we may be in the minority right now, at least you won't have to compete for our business, at least at first.)
Showing posts with label health care. Show all posts
Showing posts with label health care. Show all posts
Monday, May 30, 2011
Friday, January 28, 2011
Corn Allergy
The thing about a corn allergy is that sometimes it;s not just socially isolating, it feels like a downright punishment.
It's bad enough that you can't just go out to eat with friends, or try out a new restaurant, or stop for coffee and a muffin if you're caught in traffic on a long commute.
A simple headache remedy costs a fortune, and you have to jump through hoops of red tape before you are given the privilege of paying it. But the worst is going to the doctor.
You're sick, with some complaint or another that simply doesn't improve on it's own. You need medical advice, and probably medical treatment. And you're tired, worn down from your ailment.
However, you need to remind your dr that those latex gloves could be dusted with cornstarch. Women need to bear in mind that the lubricant used during an internal exam is probably corny. (and generally just put up with the itch of a topical one-time exposure) And then you get to the prescription.
"Is there corn in that?"
You get The Look. Stifled laughter, poker face. Why would there be corn in medication? Corn is a vegetable. It grows in fields, it's easy to spot on the dinner table.
"There are often corn derivatives used in the excipients of medication."
This gets a little better reaction, at least it sounds as if you know what you're talking about. There's hemming, and hawing, shuffling papers or clicking of a computer mouse.
"Dextrose, microcrystalline cellulose, xanthan gum..."
At some point, you're told to talk tot he pharmacist, who blinks, and tells you to talk to your dr.
Eventually, you either get an answer and start the "What are my other options" routine.
Ideally, since you're not feeling well, the dr and pharmacist would be proactive in helping you track down a brand name of a medication that will work for your condition and is safe. But more often than not, they leave you to do the legwork. Once you've exhausted all other avenues, you get to explore the world of compounding.
I find that doctors are reluctant to write a prescription for compounded medication. They prefer prefabricated pills, probably because the strength is guaranteed and they don't have to think about dosage or scheduling or anything like that. With the pre-prepared prescriptions and over the counter medications, there are also pre-prepared instructions. They fit into a neat little niche in your chart. Compounding confuses things.
Eventually, you usually get what you need and it only costs a small fortune. :P Or, if you don't *really* need it, you give up and save a small fortune.
And then there are medical procedures and tests. Some require contrast dyes and other niceties that just don't come with handy ingredient labels. And the personnel don't have time to argue with you or track down answers. So you either play a squeaky wheel, or give up and play the martyr. It's only a few days/weeks of reactions, and the benefits outweigh the discomfort.
Or there are tests where they say "If it's too uncomfortable we can always give you something."
Except...with a corn allergy, you need to prepare for that scenario and have something safe available. Which is expensive if you end up not needing it, and stressful even if you do.
So you suck it up and just deal. Cavities, biopsies, freeze off a mole. Things no one likes to do. As a human being, you suck it up and deal because you know that the end result is worth the discomfort.
But with a corn allergy, you quake inside because you know that if something goes wrong, they'll make you a whole lot more miserable the more they try to fix it. And you have a very limited number of options to minimize the discomfort to begin with.
It's no wonder they tell us it's just stress. The miracle is that we don't all turn gray the first year after diagnosis!
It's bad enough that you can't just go out to eat with friends, or try out a new restaurant, or stop for coffee and a muffin if you're caught in traffic on a long commute.
A simple headache remedy costs a fortune, and you have to jump through hoops of red tape before you are given the privilege of paying it. But the worst is going to the doctor.
You're sick, with some complaint or another that simply doesn't improve on it's own. You need medical advice, and probably medical treatment. And you're tired, worn down from your ailment.
However, you need to remind your dr that those latex gloves could be dusted with cornstarch. Women need to bear in mind that the lubricant used during an internal exam is probably corny. (and generally just put up with the itch of a topical one-time exposure) And then you get to the prescription.
"Is there corn in that?"
You get The Look. Stifled laughter, poker face. Why would there be corn in medication? Corn is a vegetable. It grows in fields, it's easy to spot on the dinner table.
"There are often corn derivatives used in the excipients of medication."
This gets a little better reaction, at least it sounds as if you know what you're talking about. There's hemming, and hawing, shuffling papers or clicking of a computer mouse.
"Dextrose, microcrystalline cellulose, xanthan gum..."
At some point, you're told to talk tot he pharmacist, who blinks, and tells you to talk to your dr.
Eventually, you either get an answer and start the "What are my other options" routine.
Ideally, since you're not feeling well, the dr and pharmacist would be proactive in helping you track down a brand name of a medication that will work for your condition and is safe. But more often than not, they leave you to do the legwork. Once you've exhausted all other avenues, you get to explore the world of compounding.
I find that doctors are reluctant to write a prescription for compounded medication. They prefer prefabricated pills, probably because the strength is guaranteed and they don't have to think about dosage or scheduling or anything like that. With the pre-prepared prescriptions and over the counter medications, there are also pre-prepared instructions. They fit into a neat little niche in your chart. Compounding confuses things.
Eventually, you usually get what you need and it only costs a small fortune. :P Or, if you don't *really* need it, you give up and save a small fortune.
And then there are medical procedures and tests. Some require contrast dyes and other niceties that just don't come with handy ingredient labels. And the personnel don't have time to argue with you or track down answers. So you either play a squeaky wheel, or give up and play the martyr. It's only a few days/weeks of reactions, and the benefits outweigh the discomfort.
Or there are tests where they say "If it's too uncomfortable we can always give you something."
Except...with a corn allergy, you need to prepare for that scenario and have something safe available. Which is expensive if you end up not needing it, and stressful even if you do.
So you suck it up and just deal. Cavities, biopsies, freeze off a mole. Things no one likes to do. As a human being, you suck it up and deal because you know that the end result is worth the discomfort.
But with a corn allergy, you quake inside because you know that if something goes wrong, they'll make you a whole lot more miserable the more they try to fix it. And you have a very limited number of options to minimize the discomfort to begin with.
It's no wonder they tell us it's just stress. The miracle is that we don't all turn gray the first year after diagnosis!
Wednesday, December 01, 2010
Stress + Stress
About 18 months ago, July of 2009, I posted about the family stomach bug. The one that the kids seemed to eventually recover from, but I just never really did. Well, eventually I figured I was probably close to normal. What is normal, anyways? Other than an absence of being 'worse than usual'.
It turns out that somewhere between then and now, I developed a bacteria known as H Pylori. Ironically, this bacteria was originally called "stress" and is the number one cause of ulcers.
Diagnosis was really easy. Luckily, my dr did think to run the blood test and it was positive.
The next step should be relatively straightforward. A triple whammy attack of 2 antibiotics and a proton pump inhibitor.
Of course...I had 2 questions. What's the PPI for? And "Is there corn in that?"
The answers were not so straight forward. I'm uncomfortable that the answer to "What's the PPI for?" was 'That's the standard treatment, we find it works.'
I know it's just me. But I like to know WHY. And the answer of "You just don't understand" gets under my skin. Of course I don't understand! Why else would I ask?
And then it comes to corn. The list is quite long.
It encompasses a large number of potential names. I don't react to the protein. I don't know why. I'm not willing to study it too much further...not on myself. Not after dealing with it and learning more, and accepting what I've learned over a full 7 years.
7 years.
It's a long time. It's been a long process. You'd think after so many years I'd understand what was going on. I'd be able to navigate any system.
But I didn't count on a system that doesn't recognize or respect the acknowledgment of prior doctors, of unusual situations. I spent 4 days visiting with the pharmacy.
I was reassured. Placated. Confidently soothed. But I didn't feel validated or respected.
That's scary, and it makes me feel rebellious.
But the bottom line was that the ER was accessible. If I end up there they can do something.
There's nothing else they could offer. The dr says to talk to the pharmacist, the pharmacist says the doctor makes the call. They called the manufacturers and asked if corn was used in the process. They couldn't tell me if they ascertained "any corn derivatives" or if they specified starch as well as protein. The stress of going to the pharmacy on a daily basis for less than 10 minutes with the pharmacist before they walked away was getting to me.
The end result is that the decision was up to me. I could trust them, and take medication that may or may not help. And was likely to make me nauseous and crampy by it's very nature. Or, I could not take it.
H Pylori is common. It doesn't always cause symptoms.
But I'm symptomatic and I'm getting depressed. (from the symptoms...seriously? If you lived on rice because your stomach was volatile, you'd probably get depressed, too.) So, I took the meds. At least, I took them until I gagged on them, and couldn't keep them down.
Then I stopped taking the one I was most suspicious of (omeprazol, the PPI) and continued...much more successfully...with the antibiotics. I figured that vomiting undigested meds wasn't helping me any. So taking the antibiotics alone was better than nothing.
My colon still feels like it's been beaten to a pulp. Mostly because of the charlie-horses that set in not long after the meds took effect. Typical corn response, for me. I'm still having occasional tightness of breath, but that was one my complaints before...so who knows if it's corn related? I have chills, but it's pretty cold. Still struggling with nausea and lack of appetite. The itchiness has finally subsided. (Mostly.) I don't seem to have actually hived out. I've slept 16 hours a day (at least) for the past 2 weeks and I'm still tired.
But I'm thankful that the antibiotics are over, and I'm crossing my fingers that once the corny reaction finishes working it's way through, maybe I'll be able to enjoy the holidays.
It seems like I've missed spending time with family and friends a lot the past few years.
It turns out that somewhere between then and now, I developed a bacteria known as H Pylori. Ironically, this bacteria was originally called "stress" and is the number one cause of ulcers.
Diagnosis was really easy. Luckily, my dr did think to run the blood test and it was positive.
The next step should be relatively straightforward. A triple whammy attack of 2 antibiotics and a proton pump inhibitor.
Of course...I had 2 questions. What's the PPI for? And "Is there corn in that?"
The answers were not so straight forward. I'm uncomfortable that the answer to "What's the PPI for?" was 'That's the standard treatment, we find it works.'
I know it's just me. But I like to know WHY. And the answer of "You just don't understand" gets under my skin. Of course I don't understand! Why else would I ask?
And then it comes to corn. The list is quite long.
It encompasses a large number of potential names. I don't react to the protein. I don't know why. I'm not willing to study it too much further...not on myself. Not after dealing with it and learning more, and accepting what I've learned over a full 7 years.
7 years.
It's a long time. It's been a long process. You'd think after so many years I'd understand what was going on. I'd be able to navigate any system.
But I didn't count on a system that doesn't recognize or respect the acknowledgment of prior doctors, of unusual situations. I spent 4 days visiting with the pharmacy.
I was reassured. Placated. Confidently soothed. But I didn't feel validated or respected.
That's scary, and it makes me feel rebellious.
But the bottom line was that the ER was accessible. If I end up there they can do something.
There's nothing else they could offer. The dr says to talk to the pharmacist, the pharmacist says the doctor makes the call. They called the manufacturers and asked if corn was used in the process. They couldn't tell me if they ascertained "any corn derivatives" or if they specified starch as well as protein. The stress of going to the pharmacy on a daily basis for less than 10 minutes with the pharmacist before they walked away was getting to me.
The end result is that the decision was up to me. I could trust them, and take medication that may or may not help. And was likely to make me nauseous and crampy by it's very nature. Or, I could not take it.
H Pylori is common. It doesn't always cause symptoms.
But I'm symptomatic and I'm getting depressed. (from the symptoms...seriously? If you lived on rice because your stomach was volatile, you'd probably get depressed, too.) So, I took the meds. At least, I took them until I gagged on them, and couldn't keep them down.
Then I stopped taking the one I was most suspicious of (omeprazol, the PPI) and continued...much more successfully...with the antibiotics. I figured that vomiting undigested meds wasn't helping me any. So taking the antibiotics alone was better than nothing.
My colon still feels like it's been beaten to a pulp. Mostly because of the charlie-horses that set in not long after the meds took effect. Typical corn response, for me. I'm still having occasional tightness of breath, but that was one my complaints before...so who knows if it's corn related? I have chills, but it's pretty cold. Still struggling with nausea and lack of appetite. The itchiness has finally subsided. (Mostly.) I don't seem to have actually hived out. I've slept 16 hours a day (at least) for the past 2 weeks and I'm still tired.
But I'm thankful that the antibiotics are over, and I'm crossing my fingers that once the corny reaction finishes working it's way through, maybe I'll be able to enjoy the holidays.
It seems like I've missed spending time with family and friends a lot the past few years.
Saturday, February 27, 2010
Blue Dye
It's out there. It's a neurostimulant. It's actually being used as an experimental treatment for migraines.
I knew that it affected migraines because several years ago, we traced some very spectacular looking migraines (total pallor, projectile vomiting, collapse) to blue toothpaste and pretty blue jellybeans used in math centers. (Count the red and blue jelly beans. Now eat the blue ones. How many are left? No wonder Penguin doesn't like math.)
However, the greater medical community (and the even greater American populace) seems to remain in the dark.
I recently had yet another argument with a pharmacist about the relevance of inactive ingredients in medications. She stated that it wouldn't be serious. I politely replied that it would counteract our attempts to treat the migraine by adding new triggers. She disagreed, because there isn't a lot of blue in the medication. It looks white and red.
This is the trouble. Even if people begin to suspect a trigger, whether it's for migraines or stomach aches or behavioral issues, members of the medical community dismiss them in a hurry. They're too quick to cast shadows of doubt on people's personal observations. They ignore statements. Talk over people in reassuring tones. And sometimes we let them. I know I used to. And sometimes, especially when I'm sick (and it's regarding me) I let them.
But this was for my daughter. So I persisted.
We spoke with a new neurologist on Wednesday. She was interested, and believed us about the blue dye being a trigger.
Unfortunately, she's never had to deal with the pharmacy and inactive ingredients before. And apparently she's had as much trouble with them as we did. I think part of the problem is that it isn't the neurologist's job to look at the inactive ingredients of a medication. It's the pharmacist's job to find a suitable form of a prescription medication. They are supposed to be the experts in formulas. The doctors are supposed to know diagnosis, tests to use for diagnosis, and suggested treatments. It's the patient's job to choose a treatment, in consultation with the dr, and then carry it out. It's the pharmacist's job to assist them in getting the suitable treatment.
But when they don't feel like helping, it leaves the patient high and dry. The government is making it more and more difficult to access compounded medication. Compounding pharmacists need to protect themselves in order to serve the majority of their customers; and compounding pharmacies are a dying breed.
With the rising awareness of dye reactions, inactive ingredients in medication is going to continue to be problematic. And misinformed medical personnel can actually prolong diagnosis if the patient believes, in error, that medication is safe for them. If it should be safe, but it causes a rash, or anxiety, or depression, or insomnia...these symptoms could be construed as complications of conditions being treated.
How many people take medicine for depression? Or blood pressure? Or ADHD? Or countless other mild, but chronic, medical conditions? Ones that include symptoms like headaches, anxiety, behavioral issues, insomnia. How do you know of your symptroms are solved by a medication that can cause the symptoms you're treating? What sense is there in treating my daughter's migraine with a medication that contains an ingredient known to trigger her migraines?
I may not have a medical degree, but that doesn't mean I don't need an answer to that question before taking a chance. I'm concerned for the individuals who miss the fine print, who don't question the pharmacist, who suffer in the dark.
But I'm not sure how to fix it.
I knew that it affected migraines because several years ago, we traced some very spectacular looking migraines (total pallor, projectile vomiting, collapse) to blue toothpaste and pretty blue jellybeans used in math centers. (Count the red and blue jelly beans. Now eat the blue ones. How many are left? No wonder Penguin doesn't like math.)
However, the greater medical community (and the even greater American populace) seems to remain in the dark.
I recently had yet another argument with a pharmacist about the relevance of inactive ingredients in medications. She stated that it wouldn't be serious. I politely replied that it would counteract our attempts to treat the migraine by adding new triggers. She disagreed, because there isn't a lot of blue in the medication. It looks white and red.
This is the trouble. Even if people begin to suspect a trigger, whether it's for migraines or stomach aches or behavioral issues, members of the medical community dismiss them in a hurry. They're too quick to cast shadows of doubt on people's personal observations. They ignore statements. Talk over people in reassuring tones. And sometimes we let them. I know I used to. And sometimes, especially when I'm sick (and it's regarding me) I let them.
But this was for my daughter. So I persisted.
We spoke with a new neurologist on Wednesday. She was interested, and believed us about the blue dye being a trigger.
Unfortunately, she's never had to deal with the pharmacy and inactive ingredients before. And apparently she's had as much trouble with them as we did. I think part of the problem is that it isn't the neurologist's job to look at the inactive ingredients of a medication. It's the pharmacist's job to find a suitable form of a prescription medication. They are supposed to be the experts in formulas. The doctors are supposed to know diagnosis, tests to use for diagnosis, and suggested treatments. It's the patient's job to choose a treatment, in consultation with the dr, and then carry it out. It's the pharmacist's job to assist them in getting the suitable treatment.
But when they don't feel like helping, it leaves the patient high and dry. The government is making it more and more difficult to access compounded medication. Compounding pharmacists need to protect themselves in order to serve the majority of their customers; and compounding pharmacies are a dying breed.
With the rising awareness of dye reactions, inactive ingredients in medication is going to continue to be problematic. And misinformed medical personnel can actually prolong diagnosis if the patient believes, in error, that medication is safe for them. If it should be safe, but it causes a rash, or anxiety, or depression, or insomnia...these symptoms could be construed as complications of conditions being treated.
How many people take medicine for depression? Or blood pressure? Or ADHD? Or countless other mild, but chronic, medical conditions? Ones that include symptoms like headaches, anxiety, behavioral issues, insomnia. How do you know of your symptroms are solved by a medication that can cause the symptoms you're treating? What sense is there in treating my daughter's migraine with a medication that contains an ingredient known to trigger her migraines?
I may not have a medical degree, but that doesn't mean I don't need an answer to that question before taking a chance. I'm concerned for the individuals who miss the fine print, who don't question the pharmacist, who suffer in the dark.
But I'm not sure how to fix it.
Wednesday, February 03, 2010
If I were to fix the healthcare system...
Just a few of my thoughts after spending a day arguing with our new "insurance specific" pharmacy about whether or not blue dye reactions are valid, and another entire day waiting next to the phone to talk to a doctor about migraines and dye and medication options. I can see where this insurance could be good for someone without allergies or extenuating circumstances. But, we have extenuating circumstances. And I don't have the patience for them to learn on us, especially if they don't want to learn from us.
- Forget insurance for everyone. Healthcare for everyone. Affordable healthcare.
- Standardized billing codes. They have standard numbers for produce, they can create nationwide billing codes for well child, well adult, pap smear, emergency stitches, UTIs, heart attacks, etc.
- Responsibility in the healthcare field. Everyone makes mistakes. Doctors and nurses are human. But grown ups own up to their mistakes. If a healthcare provider makes an error, they should cover the costs of fixing it. Period. That's the way it is in any other industry. If they forget to run a B12 test when they draw blood, they pay to draw more blood. If they cause an allergic reaction by inadvertently giving a medication containing a known allergen (for the individual) the individual should not bear the cost of treatment. (within reason. If they insist on a -cillin drug and know that they'll react, it's their own fault.) If they remove the wrong mole, they should cover the cost to go back in and remove the right one.
- Full disclosure. All options should be discussed. And if an insurance plan does not cover the cost of a chosen course of treatment, a payment plan should be implemented. One that takes into account a person's financial situation. In other words, income should not dictate your access to the best treatments.
- For non-medically necessary treatments and procedures, predicted costs should be readily accessible. The patient's portion of a payment for a ct scan or laparoscopic surgery "just to see" should be part of a decision making process if the patient feels it is relevant.
- An extremely unsatisfactory office visit deserves a refund of at least part of the copay. The patient is the customer. They should be treated with respect, educated to their degree of willingness and interest, and should be a partner in their own healthcare. If a doctor disagrees with a patient, they should free them to go elsewhere. Doctors should be free to admit when they aren't comfortable treating a patient's condition and not willing to learn. This would probably cut down on misdiagnosis, and overuse of the mental health system. :P
- Not sure if this should be a healthcare mandate, but patients should be encouraged to use doctors wisely. Perhaps a "good patient" benefit for not overusing the cold/flu visits? Or for getting standard tests run prior to an appointment so that you can have the best use of your, and the doctor's, time. (A doctor can request or approve a request for tests but insist the patient come to an office visit to receive results and discuss options.) This would encourage doctors to educate patients on managing their health, and encourage patients to take charge of their own health, and make wise personal decisions (wait and see if a low grade fever breaks within 48 hours) Perhaps having a health nurse who can reccomend home treatments with the caveat that any patient wanting to be seen will be given an appt would work.
- Pharmacies should be required to release a prescription (print an electronic one) if the patient requests it. That way if there is a disagreement between patient and pharmacist, the patient can go to a different pharmacy. This would encourage the pharmacist to work with patients, as well as empower patients to self advocate when necessary.
- The process for applying for insurance should be fixed. You should be able to get a quote before submitting estimated payments. You should be able to get quotes from several companies. And you should be able to regularly shop around while insured, without endangering your insurance. If currently insured, there should be no "pre-existing conditions", even if you're switching from employee sponsored to self subscribed. And self subscribers shouldn't have to pay more than employee-sponsored programs do.
Just a few of my thoughts after spending a day arguing with our new "insurance specific" pharmacy about whether or not blue dye reactions are valid, and another entire day waiting next to the phone to talk to a doctor about migraines and dye and medication options. I can see where this insurance could be good for someone without allergies or extenuating circumstances. But, we have extenuating circumstances. And I don't have the patience for them to learn on us, especially if they don't want to learn from us.
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