Tuesday, May 26, 2009

To Be Child-free

Many women are preparing for their weddings this time of year. It's inevitable that along with the "Are you excited about your wedding?" the conversation will turn to "Are you planning on children?" Whilst some women gleefully cheer out the names of their future fantasy brood, others, like me and millions more change the conversation to something more pleasant. Some of us are not physically or mentally able to have children, and others are not likely to have children by choice, and that's today's topic.

I remember being a 20 year old, in the Navy, and wondering what might have become of any children I may have had, with a failed marriage at hand. All throughout my childhood it was drilled into my head that women grow up and have children of their own who cause as much grief as we gave our parents. In all my years as a child, I never really thought that I was the 'growing up to be a wife' type. I saw my parents marriage as a great example of what not to be like, and I saw my father's subsequent relationships as examples of how nothing lasts forever. It's a bit bleak to say so, now that I'm in a happy marriage, but in my strongest understanding- relationships weren't about having children, they were about trying to be human around another person.

I only truly considered what it would be like to be "mom" one time. I was in my twenties, and involved with another artist. As a pair, we were pretty fun, and as a family, we worked out- but medications took away that idea. We broke up when I moved to California, and he was happily a dad within a year with someone else. Meanwhile, I was tested for brain disorders and given chemicals that render people sterile. When I ended up on much stronger dosages while I was in grad school, I was told by a medical student, "I'm sure you are aware that you have almost no possible way of conceiving at this point." Actually, I hadn't. I had no idea. That's when I realized, I probably wasn't ever going to consider it again.

When I was 30, it was confirmed that I had an ovary missing, and another that was doing only part of its job. I started talking to other women who were childless, some by choice, and others, like me, who had medical issues. The common bond to us seems like a new society- almost a new culture. It isn't uncommon to find couples who are not parents as it was when we were growing up. It's not uncommon to find women who elect to adopt, or go through a surrogate. It's not uncommon to find happily married couples adopt a child later in life. And, its certainly not uncommon for women to become surrogates for others. Fertility clinics exist in nearly every major city across the country. And yet, we're still asked "When do you plan to have kids?"

Some friends have gone through the worst kind of hell known to man- the red tape it takes to adopt. One couple we know tried using the fertility clinics, attempted to harvest eggs, thought about surrogacy, but elected to adopt. With millions of children hoping for a home they had age and illness against them, so reached out to the foreign agencies. My cousins, also dealing with MS, ended up finding the only source of adoption available to them, in Korea. I now have a pair of twin cousins who looked like little china dolls when they arrived here, and friends who have the tiniest little daughter with the prettiest brown skin. Both families became complete with the adoptions, and they just worked best that way.

Another friend of mine lives in San Francisco, and has worked hard for the possibility of having her infertility reversed. She and her partner lived together for almost sixteen years before realizing that they wanted a baby of their own. After several failed attempts, she succeeded with an egg transfer from her own younger sister. Genetically, her daughter is similar but not 100% hers, but physically, she says, 'I feel like she is a part of me because she came from part of me.'

We all know single parents. My dad raised my sister and myself for several years on his own. One of my best friends not only has two children of her own, but is working towards getting her daycare license. She is only 27, and yet she is years ahead of me for maturity and mothering instincts. Knowing her makes me wiser in how much work, and love, and amazement comes from raising a child. Her children reflect her sense of values, kindness, and altruism. Another of my closest friends has two teens, both are home schooled, and her husband and she work diligently together to ensure that whatever may come, the children feel important, loved, and are growing to be good people. Parenting is the most difficult job, and when people do it well, it makes our world better.

Then, there are those who could take the options of adoption, or surrogacy, or even fertility treatments, but we just are not parents. We are not going to be parents. And, we may love the children in our lives, but we have no interest in sharing our lives with children of our own. Some people call us selfish. It strikes me more selfish to see children in the world who are orphans. It strikes me more of vanity to procreate based on the idea that "you gotta". If I ever felt the urge to mother, I see the need for taking in someone who needs love. I don't find that to be selfish. I also see that as I grow older, and my illness progresses I am not as able to do things for a child as someone able-bodied might be. That can't be selfish. And, as my parents age, I see that there may be a time in my life when I will need to focus my attention on being their care taker, and I think that's not very selfish either.

Women who are asked, "When do you want kids?" often feel uncomfortable answering. We should. It's a personal question, invading our deepest emotions. You'd never go up to a senior citizen and say, "when do you plan to die?" (Or maybe you would, I know who reads this blog!) These are the same people who ask a pregnant woman to "touch the belly". It's not a matter of intentional rudeness, in most cases, it's a matter of ignorance to the idea that this question is difficult to answer for many of us.

I tell people when I give grief counseling that you should always have three responses to any question you feel uncomfortable answering. The first should be a polite, evading response. "I will let you know if its in the plans." The second should be the "For family only" response, "I think we're more excited about.." insert your next family event here. And the last is always the smart-arsed one. "Are you volunteering for babysitting? Breastfeeding? Surrogacy?" etc.

In daily conversation, we can expect people to be more interested in talking about themselves than about us. It's easy to change the subject if we give the other person a way to just let us know their opinions, thoughts, emotions, responses. People like to be cared about and this is a great way to show you care- listen. Your best response will be as different from my best response to intruding questions. But there are ways to handle general questions from some members of our circles.

The best response is always to turn it around and deflect if you aren't really open to the discussion. If there is someone who has children asking, "When did you decide to have children?" is a good response. Turning the reply into a self-reflecting question is a way to learn another's thoughts on the idea, and can take the pain out of responding. Or, if there is a persistent family member who can't really take "I don't really want to talk about this now" as an answer, sometimes its best to let them believe they've got you convinced about their ideas, and then move on. "Oh children would be wonderful someday, and I'll know when the time is right." Then, in the case of the rude, intrusive friend or co-worker, sister, or aunt, "Really, I prefer not to talk about such personal things. How about them Red Sox?" Pointing out that you are clearly not willing to talk about your feelings, or illness, is certainly a correct response. And, I have found that simply stating, "I'm unable to have children because of medical reasons, but I enjoy your company, let's have that for now." This is a great way to stop any further questions.

There's nothing wrong with being honest to others who are intrusive. We all know this can be terribly uncomfortable, and as much as it is difficult to hear ourselves rehash the conversations we had with doctors, it may be more painful to have family and friends give up on us because we snapped. "I hate kids, back off Nana!" Being tactful means being able to honestly state your feelings without being condescending to another person's feelings or even issues you are unaware of. (Maybe Nana was one of ten children, and the only one who survived. Maybe Nana fears living her last days without any family around and hopes that your children will be there for her.) Understanding another by knowing intentions eases all communications. If intention is unclear, it makes it hard to respond in the best way possible. Learn the intention, and you can get past the question. "No matter if I have kids or not, Nana, I'll be here for you."

Today's questions- Do you find yourself explaining to others why you aren't a parent? Do you want to discuss being childless with others, and where do you go for this? If you could have a child, would you, or would you adopt? What is the best response for people who ask about your status as a parent?

Monday, May 11, 2009

Conflicting Reports And Commercials

Today came an announcement of two dramatically different medical conditions and the results of studies which may change a patient's view of each. The article in Time Magazine, by John Cloud, points out the issues surrounding the clinical studies of Depression Medication. And, HealthDay News reported today that conflicts of interest between medical research and pharmaceutical company research is affecting the outcomes of cancer treatment studies- to the detriment of the patient.

What both articles point out is that our doctors, who read information via the same news services, are also getting confused by conflicting reports on clinical studies. Efficacy rates, which should be a priority in medication research, vary for reasons ranging from the patients available for studies, to the demographic in which the research is conducted, to the medications being tested against placebos rather than similarly formulated options. There isn't any one set of standards that are in place that protect the patient and give the researchers accurate information. Each study is done based on criteria set by those in charge of that study.

Company A- which manufactures "Kiwi Juice" can test its product for results against "scurvy". It can sit ten people in a room, have them drink a glass of juice once a day for a week, and put the same ten people in another room and give them access to nothing but bread and crackers for a month, compare the two results, and say, "Kiwi Juice did better at preventing Scurvy than other foods." They'd be telling the truth, but they aren't comparing against citric fruits, or other juices, or under the exact circumstances, and the results could be approved the the FDA.

Pharmaceutical Company B- which is seeking to cure teens of acne, can hire doctors who have promised to only use products from Pharmaceutical Company B. Then, they can ask these doctors how the product has helped their patients. The results will be "Seven out of Seven Doctors agree- Pharma-B is the best medicine for teen acne!" They'd be right. And, results could be verified and approved by the FDA.

When our doctors read the same studies, they assume, as we do, that there have been some sort of standards in place that clearly outline the correct patient for the correct medicine, treatment, or product. In fact, they'd be wrong. Most people who take part in clinical trials are volunteers, not selected for gender, genetics, or age. It is probably not surprising to you that many of the birth control options available to women were tested on male prisoners, some even well into their later years, and not on women of many nationalities, of childbearing ages. And, it's far less surprising that we don't get the full results of a medication or food product until well after it has been in the market and in our homes.

Our doctors are as easily confused as we are. Most are given long sales pitches about specific drugs or treatments that are so convincing that many become advocates for them. In recent news, the failure of a catheter for heart patients has become a big headline, but the information was available as long ago as 2005. There are also failures of heart treatments on women that seem to work well for men. The procedures have been in practice at numerous hospitals and cardiac specialist clinics- and yet, the studies that show proof of these theoretical failures have only come to light after many women died. The first studies published on this were as long ago as 2006, but no definitive tests were completed. Deaths of patients were the only true statistics that could be verified- well after these theories were tested.

A lot of the confusion in our doctors office is directly related to the same television commercials we see when we watch our favorite programs. More confusion comes from the placebo affect patients feel when given those same publicized drugs and treatments. Psychologists have long confirmed that hearing something enough will make it seem factual, even when there is a lack of supporting information. As patients, we're likelier to believe a celebrity endorsement of a treatment before we read the facts and statistics. When we hear our friends say "This worked wonders for me" enough times, we start to believe it will work wonders for us too.

You may note that the birth control option, Yaz, has changed their advertising to make it sound more truthful. It begins "We have been told by the FDA that we should clarify points regarding the prescription medication, .." Then a very pretty woman, with a very sincere face, explains the side effects and issues with the medication, including the words "fatalities". In fact, previous advertising listed the exact side effects, but in written form, so it wasn't as clearly stated to the television consumer. Our favorite magazines, Sunday paper inserts, and even posters on public transportation, advertise medication and treatments, showing required Side Effects, prescribing information, and the phrase, "Be sure to talk to your doctor about...".

As consumers who want to sound informed, we may just do as the ad requested, and say to our doctors, "you know, I'm reading about that pill X, and it says that it would be good for people like me who have Y." Your doctor probably has seen the same advertising, and even heard other patients request the same medication for the same reasons. Your doctor is under the belief that this medication is something that may help you because you have told her so. The doctor may have other patients who claim to feel different on that treatment. The placebo affect may prove true, or the medication formula may be the one you need, but do the research beyond the advertising first. Keep in mind that every thing we see on television is designed to make us watch, and repeat what you have learned. That's the power of group thought, of advertising, of things that SOUND true.

Tonight, I saw an advertisement for the product touted as a cosmetic industry "must"- Botox. This form of botulism has proved useful to patients who suffer from MS, and those who have nerve damage, joint issues, and even muscle atrophy. But, the ad featured a beautiful actress, Virginia Madsen, who also offered her story for People Magazine. Jamie Lee Curtis has become spokeswoman for Activia, a yogurt product which has probiotics as part of its formula. Probiotics are relatively new to the public consumer, but are used in Veterinary Medications, and by gastrointerologists, and have been for years. Botox isn't what improved Virginia Madsen's looks enough to aid her career. In fact, a contract with Botox helped her career, by giving her a new job in the public eye, and offering her an income for letting people know about her use of the toxin.

Both women, beautiful, older, and trustworthy in the public eye, are causing doctors to hear patients requests for "probiotics" and "injectible cosmetics". Neither woman is a medical professional, nor did either take part in long term studies for either treatment. Public trust has helped increase the number of patients coming to doctors. Advertising has convinced doctors to "try" these treatments.

We all are aware of the lawyer advertisements that warn us against the dangers of specific medications, such as Phen-Fen. The lawyer ads are not as prevalent, and instead, for each ad that claims a diet drug causes heart damage, there are dozens if not hundreds more, praising the results of the same drugs. This weekend, Hydroxycut was pulled from shelves by the FDA. As a product that has paid for more advertising that motor companies do for entire lines of cars, this may be the lawyers' next "phen-fen". Because it is an over-the-shelf product, consumers think of it as "safe". We don't often tell our physicians if we are taking a treatment like this, because we mistakenly assume we're safe by taking it. It is important to give your doctor a list of all medications, supplements, including vitamins, and over-the-counter products we consume to keep her informed, and to help protect our overall health. It is part of being a smart self-health advocate.

Today's questions- Have recent news stories changed your opinion of treatments you have had? Have commercials influenced your discussions with your doctors? Do you find that news stories and advertisements are in conflict? Have you read the unbiased studies regarding your treatments prior to accepting them from your physicians?

Wednesday, May 6, 2009

Do TV Shows Cure Illnesses?

I have read several emails from people who are members of the Discovery Health Channel board on Mystery Diagnosis. Three women and one man have told me that they've discovered the cure for their illnesses are found directly on this website, and are excited about it. Two other women said they are still waiting, and I'm quoting both emails, "for SOMEONE to help". Each has posted a long letter regarding symptoms, letting the readers and board members know the frustration each has faced. One was very upset that the television show hasn't contacted her to help her find a solution. The simple response is- television can't cure us.

Tonight there's a show called "I Want to Save your Life". Dr. G. Medical Examiner has a show about ways not to die. My friend Stacy Kaiser has a show called Diet Tribe. Another friend, Ant, does Celebrity Fit Club. Dr. Oz has the "You, On.." series. There are dozens of shows about diseases and disorders on every day, on many networks, and in any language. But, although we can learn about our conditions, or perhaps find resources that will lead us to support, tests, or even medications, the bottom line is- we need to be the active participants in our own care, and we can't solve our problems with remote controls.

For those of us who have chronic conditions, it may be a great time to get in exercise- simply watching television and getting some- any - movement happening in our lives. Ten sit-ups, ten push-ups, arm curls with a can of peas- leg stretches- all can be done in less than ten minutes a day. If we can manage enough energy to sit and watch television, we can move, and that's always a great way to help improve our health. If we are in wheelchairs, or even partially mobile we can try to tighten and relax our muscles to complete some isometric exercise. It doesn't take much effort to keep our muscles alive.

But what if you find some clue to your illness from something you find on television? What if Dr. House mutters some random symptoms that you've been fighting with for years? What if you hear a woman and her children on a Discovery Health network program discuss the exact episodes you've faced for months? Can you find a solution for your illness from a television program? The answer is up to you, and in your ability to see past a television program for answers.

We've talked about finding a doctor who will listen to you as well as have you take your tests. We haven't talked about ways to approach your doctors with information that may assist in your diagnosis. Part of the problem is that television gives part of the answers, but not always the full solution. Some misdiagnoses go on for years because of misinformed doctors and patients. Right now the "hot diagnosis" is Vitamin D deficiency and partly due to Oprah, Hypothyroidism. The hot cure-all is Acai for weight and Sam-E for depression. Some doctors are dazzled by the advertising and representatives from Pharmaceutical Companies and gladly will hand you the latest and newest pills and potions. Others prefer to concentrate on your own individual responses to medications, tests, and even mental reactions to questions. They treat you like a person and not a product tester.

These are the doctors we want to have. We want to be able to say to our doctor, "you know there was a program on television that listed symptom x, y, z, just as I have. The show discussed the idea that the patient had Disease A." Then, if your doctor listens you will have a discussion about that particular disorder, why he thinks you could or couldn't have it, and what should be the next step in ruling it out. The smartest approach is to do your homework and write out your questions that lead to specific answers. Let's use the example of "Lupus", as it seems to be ruled out dozens of times on the show, House MD.

First, search for sites with Lupus support groups. Learn from the members the different tests that were take to discover the illness. Lupus isn't always easy to test for, and some people have symptoms for years before ever having the butterfly shaped skin color change, or the multiple joint failures. Find out what tests seem to provide the clearest answers to doctors and to patients alike. Then write down the names of these tests, how many times the tests should be performed, and of course, if you can, how the test is performed so you can have a discussion about it.

Secondly, make a note of all the of the symptoms you have the correlate to this illness, but also note the symptoms that may not be related. All symptoms you have may relate to other disorders, and could be mistaken for Lupus. Some people who have MS, for instance, are misdiagnosed with Lupus or having Fibromyalgia just for not being clear on all symptoms. The more symptoms YOU are clear about, the better your doctor will be able to assist you and diagnose you right the first time. Even if you think it's not important, it may be just the right symptom that is the key for your doctor. Include body temperature changes, weight fluctuations, and if you have changes in hunger. All of this could be important. It is better to have more details than none.

Make a list of questions that start with the words "What if..", such as "what if the tests show nothing the first time, will there be a second test?", or "what if the test is positive, will you treat immediately, or will you offer a second test to confirm?" The doctor should be able to help you as best he can, given the information he has at the time. But, be prepared to leave a list of questions with your doctor to give him time to research your condition, and give you proper responses. You may not get all the answers you want, especially in the land of 15 minute or less appointments.

Just because the person on the television has your symptoms doesn't mean you have the same disease. Be prepared for the idea that your doctor may counter your suggestion with reasons as to why this tv diagnosis isn't right for you. Some disorders have similar symptoms, and more to the point, your illness may not be as simple as something cured on television in 60 minutes or less. I knew for years that I had Ehlers-Danlos but I never knew it would put me in a wheelchair. My doctors weren't discussing this with me because I never said to them, "Yes, I have this, and I want to know what happens with me in the future." It was just acknowledged, and all of my illnesses that related to it were disregarded or thought of as something different. This is the issue with not clearly understanding a condition. With years of misdiagnoses came the resulting Hashimoto's complications.

Today's Questions- Would you bring a check list of symptoms to discuss with your doctor at your next appointment? What have you found on television that was close if not exactly your condition- so much so you've sought medical assistance? Have you found support through the forums from television programs on health?