Every time I hear that line, I remember the Fen-Phen debacle of the 1990’s, and the even more recent Vioxx scandal. Both drugs were approved by the FDA, and both drugs caused untold damage to the health of the American public, killing patients and causing permanent heart and lung damage.

Fen-Phen (Redux) was approved in April 1996; even though, according to a Frontline report, the FDA knew that a soon to be released study had linked it to primary pulmonary hypertension. In spite of testimony by Dr. Stuart Rich, co-author of the International Primary Pulmonary Hypertension Study (IPPHS), and the opinions of experts on neurotoxicity, the FDA approved the use of a drug reported to have caused a fatal, incurable disease in Europe. Seventeen months later Fen-Phen was withdrawn from the market, after an article in  The New England Journal of Medicine reported primary pulmonary hypertension and heart valve abnormalities in patients taking the drug.

In 1999, the FDA approved the drug Vioxx, mostly on the evidence provided by the manufacturer that the drug was safe. After 5 years, and an estimated 60,000 deaths , Merck withdrew Vioxx from the market when a 3 year study showed that patients taking the drug had an increased risk of cardiovascular complications. Later developments indicated that Merck had known about this risk since 2000, 4 years before the recall, and had purposefully hidden the information.

So - back to my question, “Does FDA approval mean a drug is safe?” The answer HAS to be, “obviously not,” considering how many patients have died from the side effects of FDA approved prescription drugs. As far as I can tell, FDA approval means only that a drug has not yet killed enough people to be considered too dangerous for human use.

This is  a huge decision to make, with all my issues, and I’m guessing it’s going to be an ongoing thing, since most doctors want to medicate, medicate, medicate. I figure I’m going to have to make individual decisions for everything, although I have been using this time without insurance to experiment with non-medication options like herbs, essential oils, stress reduction, etc. I’m surviving, but it’s not easy, and there are days when I wish I could just go to the doc and get a pill for the pain, so there’s that to take into consideration as well.

For the bipolar, I’ll most likely go back to the mood stabilizer when I can, since cycling is very hard on me, but I’m learning how to manage the anxiety and depression with herbs and essential oils, so that med can probably be left off without too much of a problem. Since the anti-anxiety pill is the most expensive, and causes the most trouble with side effects, I think avoiding it if possible is the best option.

The hypoglycemia is pretty much decided - I control that with diet, but I haven’t had a glucometer to check with in two years, so that comes back, no question. The strips and lancets can be expensive, but that’s pretty much a necessity to really keep my glucose levels where they need to be.

The really difficult question is the meds I was on for the fibromyalgia - that’s where most of the pills came in, and that’s the thing that causes me the most physical issues. Muscle relaxers, anti-inflammatories, pain killers, a specific fibro drug (Lyrica - I doubt if I’ll go back on that one, there were too many side effects with too little benefit. Don’t get me wrong here - I am NOT saying that if you take Lyrica you should stop, or that you shouldn’t try it, or even that it’s not a useful treatment for fibro. I’m just saying that it didn’t work that well for me. I know other folks that it works miraculously well for, with fewer side effects. It’s all in body chemistry and lifestyle and the other meds you take.) I’ve learned I can live without the muscle relaxers if I have to, so I don’t know what I’ll decide about those, it depends on how my experiments with the alternative treatments go, and the pain killers aren’t much of an issue, it took me over a year to use up the last month’s supply I had, so if I need them, I’ll probably get some.

Migraines - the herbs work pretty well to reduce the frequency, so I probably won’t bother with the meds for them. If I get a really bad one I end up having to go to the ER for shots anyway.

My allergies are life threatening sometimes, so the inhalers are definitely coming back when I can get them, and I keep benadryl on hand for emergencies (thank goodness that one is over the counter now.)

There are some alternative treatments I’d like to try if I ever have the money, too. Things like massage, and accupuncture, and myofascial trigger point therapy; and maybe even color therapy or some crystal healing, just to see if they really have an effect. (Even a placebo effect would be fine with me, if it makes me feel better, I really don’t care if it’s science or all in my head.) Just because a lot of folks don’t think something could help doesn’t mean it isn’t any good - remember all the arguments about chiropractic treatments and theraputic massage when they started?  Now both are accepted as valid adjuncts to standard medical treatment, and have graduated from “alternative therapies” to “complementary medicine.”

Sounds like a combo therapy is what I’m gonna end up with, making decisions on individual drugs on a case by case basis. One of the things I’ve learned since not having insurance is that just because a doctor suggests something doesn’t mean I HAVE to take it, and that there are other ways to manage symptoms than throwing pills at them. (And sometimes the alternatives are BETTER than the pills. I much prefer the flavor of a cup of ginger tea to the taste of one of those hideous melt-under-your-tongue migraine pills.)

That means that I STILL can’t get treatment for my bipolar, fibromyalgia, or arthritis; and my husband can’t be treated for his high blood pressure, high cholesterol, or adult ADD. Of course, once we pay out half of his check in insurance and child support every week, we can’t pay the copays anyway, so I guess it doesn’t matter whether anything is covered or not.

If the health care reform bill passes, I wonder if it will make any difference to policies already in effect. If it does, is the insurance premium going to go up so much we can’t afford to eat once it’s paid? I’m not sure how I feel about the bill anyway. I think there are some good provisions in it, but I wonder about some of them.

Like requiring everyone to buy a policy. For people who don’t make enough money to live on, how is forcing them to pay insurance premiums going to help anything? Charging an extra 2.5% in taxes if they DON’T get insurance isn’t going to work, they don’t earn enough to have to pay taxes. The best that will do is reduce the amount of the refund check, and if the refund isn’t enough to cover it, is the government going to send them to jail? Then what? The kids get put in foster care and we spend even more tax money to support them and their parents? I don’t understand it, but then, maybe I’m just stupid.

The system is definitely broken, but I don’t know if government control is the way to fix it. I’ve seen too many government programs that sounded wonderful in the beginning go the way of social security. Too many hands in the cookie jar, too much bureaucracy, and too much of the money going to pay administrative costs instead of into the programs themselves means higher costs for fewer services.

But maybe it’s better than the alternative . . . The free market system hasn’t worked very well, that’s for sure. If your job doesn’t provide health care benefits, it’s almost impossible to get insurance at a price you can afford, especially if you have any health problems. An individual policy for me (just me, not the whole family) would cost us more than our entire monthly income. How does that help, even considering that the premiums are STILL less than the monthly cost of doctors and medications? (Before you say that maybe we should be spending our money on health care instead of internet, you should know that the internet is included in the rent, and the computer is 3 years old, bought back when I had a $60,000 a year job.)

I don’t know the right choices to make, I just know there are thousands of folks like me, that have major health issues and can’t afford to get treatment for them, and SOMETHING has to change.

For example: You get a severe case of bronchitis and have to go to the doctor for treatment. The doctor is unfamiliar with bipolar disorder, and prescribes an antibiotic, a decongestant, and cortisone for you. Not knowing the dangers, you fill the prescriptions and start taking them, triggering a manic episode. (Both cortisone and decongestants can cause mania.)

Prescription medications and illegal drugs are a HUGE risk for those with bipolar disorder. Medical doctors are unlikely to know which prescription medications are unsafe for patients with bipolar disorder, since this is outside their area of expertise. A bipolar patient should never fill a prescription before researching the possible interactions and side effects, because once the prescription has been picked up, you’re stuck with it. It’s illegal for a pharmacy to accept a return on a prescription, and if you fill the prescription before making sure it’s safe for you to take, you’ve spent money on something you can’t use.

My method is to have the doctor spell out the medication name for me if it’s not printed out (if you’ve ever tried to read a doctor’s handwriting, I’m sure you understand why,) then come home and research it before taking the script to the pharmacy. My favorite website for medication research is RxList, but I also use Google to do a search on the medication for additional resources that may be helpful. If I don’t see any dangerous interactions with meds and supplements/herbs I’m already taking, it’s not listed as a stimulant, and there are no indications that it could cause mania, I have it filled. If there are dangerous interactions, or other contraindications, I call the prescribing doctor and request a different medication be prescribed (asking for a list of possibilities to research,) and call my psychiatrist for advice on which would be the safest option.

Prescriptions aren’t the only danger, however. OTC medications, herbs, and supplements can be just as dangerous. Your psychiatrist will be familiar with OTC meds that you shouldn’t take, and can most likely provide you with a list, but if not, the information is easily found online with a little bit of searching. Herbs are mostly safe in the amounts used in cooking, but if you eat large amounts of foods with stimulant herbs, it could cause an issue, so being aware of which ones can be a problem is important. The situation is similar with supplements, since vitamins and minerals are necessary for good health, and quite safe in the amounts recommended; however, megadoses can be dangerous.

Herbs that can trigger mania: St. Johns Wort, nutmeg, licorice, ginger, purslane, rosemary, ginko biloba, and ginseng

Essential oils that could cause mania:  allspice, ambrette, lemon balm, Canadian balsam, French basil, bergamot, cassie, grapefruit, helichrysum, jasmine, true lavender, orange blossom, rose, clary sage, sandalwood, hemlock spruce, vetiver, and ylang ylang

Supplements that can cause mania:  5-HTP, SAMe, DHEA, and selenium

All of these (except SAMe and St. John’s Wort, which should NEVER be taken by someone with bipolar disorder,) are relatively safe when used in small to moderate amounts, but some individuals have higher sensitivity to certain substances. I watch carefully when using any of these, and if I (or my family) notice any indications of extreme mood change I discontinue use immediately.

The fact that we don’t have health insurance makes it more difficult. I can’t afford to go to the doctor, and even if I could, I wouldn’t be able to afford to fill the prescriptions, but I’ve found some options that don’t require a prescription.

WARNING: If you are seeing a doctor and/or taking medications, discuss any herbal or essential oil treatments with your doctor, and check for possible drug interactions BEFORE trying them. Herbs and essential oils have active ingredients that can interact with medications, other herbs/oils, or vitamins/supplements; make diseases worse; and affect lab work. They can also be very helpful if you do the necessary research to make sure you’re using them safely.

• Hot baths: In the last several weeks, the only time I’ve been pain free is the time I spent soaking in a hot bath. (A hot tub or whirlpool would be better, but I don’t have access to one.)

• Lavender essential oil: Lavender is one of the few essential oils that can be applied directly to the skin without causing a chemical burn. I use it in multiple ways, for many purposes. Lavender oil is calming, antidepressant, relieves pain, is antirheumatic, antiseptic, settles the digestive system, promotes healing of wounds, increases the activity of the white cells in fighting infection, is antispasmodic and anticonvulsive, reduces blood pressure, and can be used as a bug repellent.(It should be used with extreme care by pregnant women, as it can bring on mensturation.) I use lavender in the hot baths I mentioned (20 drops added directly to the water), applied to the temples to ease headaches, mixed with other essential oils and a carrier oil for skin care and wound care/first aid, and inhale the scent directly from the bottle to calm and relax myself and help reduce depression.

• Catnip:  Yes, I know, catnip is for cats. It is also a sedative for humans, as well as an antispasmodic which can soothe an upset stomach and ease diarrhea and colic. I use a tablespoon of dried catnip (with 1/4 tsp ground cinnamon for flavor) to make a relaxing bedtime tea. In the morning, I make a tea with 1 Tbsp catnip, 1/2 tsp cinnamon, and 1/4 tsp nutmeg. The cinnamon and nutmeg are both stimulants, so they counteract the sedative properties of the catnip, while still allowing it to calm and relax me.

• Nutmeg: As I mentioned in the catnip entry, nutmeg is a stimulant which keeps the catnip from putting me to sleep. It is also an antidepressant, which helps to control the depression that accompanies chronic illness. However, I have to be extremely cautious with it, since I am also bipolar, and nutmeg can trigger a manic or hypomanic episode.

• Feverfew: I use feverfew (in capsules) to prevent migraines. In addition, if I do get a migraine, I add dried feverfew to an herbal tea with ginger and a bay leaf. (Feverfew is another herb that should not be used by pregnant women, as there is a slight chance it could cause a miscarriage.)

• Muslin tea bags: Not so much a coping strategy as a convenience, muslin tea bags are much better than tea balls if you use ground herbs and spices in your teas. A tea ball will allow ground herbs to escape thru the mesh, clouding your tea, while a muslin tea bag is fine enough to contain the powder, and is still reusable.

• Hot and Cold packs: I have two TheraBeads microwaveable hot packs (one of which is a cervical collar type pad,) and several reusable ice packs I use for painful areas. The hot packs get used more often, but if I have an inflamed joint, heat will frequently make it MORE painful, and I use an ice pack instead. There are also times when alternating heat and cold works the best. (When alternating, 20 minutes of heat, followed by a 20 minute break, then 20 minutes of cold and another 20 minute break works best.)

• Hypnosis CDs: It doesn’t really seem to matter what particular subject the hypnosis deals with, it’s more the relaxation and concentrating on something other than the pain that seems to do the trick.
• Meditation: Meditation relaxes and centers me, although it’s more difficult to focus when I’m in pain. If it’s too difficult to concentrate, I use a guided meditation or hypnosis CD.

• Writing: Sometimes writing about the way I’m feeling is cathartic, but other times I need to write about something else entirely, to distract myself.

• Cooking: On days when I can, cooking helps me to feel useful and appreciated, and allows me to express my creativity in another way. Most of my cooking involves throwing in a bit of this and a pinch of that, and seeing what I end up with. I use a lot of herbs and spices in my cooking, and sometimes choose according to the medicinal properties of what I’m using.

• Reading: I read a lot of non-fiction, especially on the subject of alternative healing, and treatments for my illnesses, but if I really need to just relax and get away from it, I read science fiction/fantasy.

• IRC (Internet Relay Chat): I have a lot of online friends (real friends, that I’ve known for years) that I can talk to about what’s going on with me. Some of them have literally saved my life by talking me thru it when I was suicidal, and some I’ve even met r/l (real life.)

• Exercise: This one is the most difficult for me. I don’t LIKE exercising, and when the pain is extreme, or I’m seriously depressed, the motivation just isn’t there; but I’ve noticed that on the days I manage to force myself into some mild exercise, I feel better.

There’s my list, I hope you find something in it that will help you cope with your own illness, or the illness of someone you care for. I’ll be doing resource pages and/or posts in the near future, with book recommendations and links to websites for more information on the various coping mechanisms I’ve listed.

People don’t really understand what a huge issue shame is for those with invisible illnesses. They can’t SEE that we’re sick, so they ask us questions or make accusations about us being lazy, or faking it so we don’t have to do stuff we don’t want to. I wish they could understand how badly we DO want to be able to live a “normal” life, to be able to keep our homes clean and work 40 hours a week, how badly we HATE being sick.

I actually screw myself over a lot, because I force myself to pretend it’s not as bad as it is and I refuse to talk about how much I hurt. It’s a protection for the people I care about. If they knew how often I wish I was dead, how much I hate my life, how much pain I’m in, they would worry. They’d worry, and they’d feel guilty that they couldn’t DO anything to make it better, and then they’d feel bad too. It’s a protection for them, but it’s also unfair to them . . . They have a right to know what’s going on, why things are the way they are; they have a right to do what they can to help. I know there’s a balance in there somewhere - a balance between pretending everything is fine and complaining constantly, but I can’t find it. I wish I could.

There are millions of us out there, 3 to 6 million diagnosed with fibromyalgia alone. Then add in arthritics with no visible deformity, those with spinal damage that is not severe enough to put them in a wheelchair, diabetics with neuropathy, knee damage, ankle damage, and on and on. Those with “invisible” disabilities outnumber the wheelchair bound, but because our disability can’t be seen it’s assumed to be non-existent, even by others in the disability community.

Not only is there discrimination in public areas, there is also discrimination in the very offices set up to help the disabled. State disability services frequently require that their clients be receiving Social Security Disability to qualify; but the Social Security Administration has a pattern of denying claims by those with invisible disabilities such as fibromyalgia, mental illness, etc.; perpetuating discrimination within the very institutions set up to aid the disabled. Denial letters may even acknowledge that disability exists, while minimizing it and stating that it does not “prevent all work.”

Discrimination is everywhere, even in our own homes, where our family and friends can’t see our pain and don’t understand why we have to pace ourselves. They frequently accuse us of being lazy or procrastinating because we have to ask for help with the things that trigger flares in our disease and because it takes us longer to complete household chores.

Is there anything we can do to stop this kind of discrimination? Yes, there is. We can use the same methods that every other disadvantaged group has used to improve their lives, the same process that is already in place in the disability community. We can use letters and political activism, we can use the legal system and the Americans with Disabilities Act, we can raise our voices and speak out against the unfairness of being ignored and treated as less deserving because our disabilities aren’t readily apparent. Our silence helps to perpetuate the misunderstanding and the discrimination, and we need to tell others what it is like for us, or they will never understand.

If it wasn’t for wonderful friends, I wouldn’t be alive today; if it wasn’t for wonderful friends, I’d be homeless and living on the street; and if it wasn’t for wonderful friends, there would be much less hope and joy in my life. My friends have talked me thru suicidal depressions, given me hope for the future when I had none, listened to me cry, celebrated with me when I was happy, and loved me when I felt unlovable. My friends have giggled at me when I was manic and being silly, talked me out of doing stupid crap, given me advice when I needed it, and told me I was being an idiot when I needed to hear it.

Real friends point out when you’re being an ass, gently if they can, more harshly when that is needed; but they tell you what you need to hear. Any friend who ALWAYS agrees with you, even when you know you’re wrong, is not really a good friend; and if that’s what you’re looking for, you should probably go out an hire yourself a “yes man.”

Friends you’ve had for a while are great . . . There’s a relationship there: you know each other; likes and dislikes, history and sensitive areas, family details and job status. You know bits and pieces, but those bits and pieces form a coherent whole and give you a comfort zone, a place of safety to retreat to when life gets too scary or too painful.

New friends are different . . . You don’t know anything about them yet, and it’s exciting to find out what you agree on and what you don’t, how they feel about things and what you have in common. With most of these folks, you’ll find out that there’s not enough to hold you together, and you’ll drift apart; but every now and then you find a keeper, someone you care about and can spend time with, someone that enriches your life and makes it better than before.

And then there are the special ones . . . The ones you meet and immediately “click” with, the ones that are comfortable from the first moment, that you feel you’ve known forever even tho you’ve never met them before. If you find one of these, rejoice in your good fortune, for these kinds of friends are the rarest of the rare and the best of the best.

How can you love yourself when you feel betrayed by your own body and mind? My life has been nearly destroyed by my diseases; which have stolen my health, my job, my home, my car, and most of my belongings. They’ve destroyed my credit; tortured my body with hideous pain, and my mind with suicidal depressions and crazed manias; and deprived both my husband and myself of medical treatment because losing the job lost the insurance as well.

We can’t even use the free clinic, because if we get treatment for any of our issues within 6 months of getting new insurance, they count as pre-existing conditions, and won’t be covered when my husband’s work insurance kicks in after he’s been there for 6 months.

We’re still together, and surviving, but it’s not easy. He’s got Adult ADD; and with my bipolar, PTSD, chronic pain, and anxiety disorders; we are frequently irritable and snappy with each other. The money stress increases the tension levels immensely, and makes it even harder to avoid arguments, especially living in one room. Thank heavens for the computer, which gives us an outlet and friends to vent to.

We’ve both spent the biggest part of the last year suicidal, and it’s a rare day when I don’t wish I would die of something, ANYTHING, just to end the pain and struggle. The only thing that keeps me going is my husband and my friends, who constantly remind me that my death would leave a huge hole in their lives. I don’t understand it, but I’m grateful that there are so many people out there who love me. I have to just accept that there are things that they see in me that I can’t see because the pain and depression interfere with my ability to make rational judgements, and trust them to make those judgements for me.

The second chapter consists of an alphabetical listing of the various herbs, drugs, and vitamins covered. Each listing includes a short description, followed by the scientific name, the common names, which part or parts are used, what its used for, the typical dose, possible side effects, a list of drugs that may interact with it, lab tests that may be altered by its use, diseases that may be triggered or worsened  by it, foods that may interact with it, and supplements that may interact with it.

The third chapter contains listings of medications that interact with herbs (listed by generic name) and the herbs and vitamins they interact with. This section is much less informative than the previous section, simply providing the herb/vitamin so that you can look it up in the previous section and see what the specific interaction is.

The remainder of the book consists of three appendices. Appendix A lists the 10 most popular herbs, Appendix B provides the properties of various herbs, and Appendix C is a listing of medications by brand name. These are small, but quite useful, sections.

Appendix B allows you to look up herbs by their action, such as checking to see which herbs lower your blood sugar. It is a very useful section; however, I found an error and a couple of omissions here. The listing for herbs and supplements with hypotensive properties is labeled as blood sugar lowering in parenthesis, when hypotensive actually means blood pressure lowering, which could cause a dangerous situation. The omissions are the sections for herbs that raise blood sugar and blood pressure. This omission is not a danger, since that information is included in Chapter 2, it does, however, make it more difficult for the user to find out which herbs have those properties.

Appendix C allows you to look up your medication by brand name, and gives the generic. This is very handy, since in Chapter 2, all medications are given by generic name to reduce the length of the listings. (Many generics are sold under multiple brand names.)

In all, this is an excellent reference, and an absolute necessity for anyone who wishes to use herbs and vitamins in combination with medications. The only modification I would like to see is the addition of a comprehensive index to allow quick reference to every page where an herb, drug, or supplement is mentioned; but even without an index, this book is very convenient to use, and finding the information is quite simple.

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