Monday, November 16, 2009

When A Doctor Is Listening...You KNOW

I've railed about the many medical fiascoes I've battled over the last thirty years. And I've mentioned that there are great resources that help weed out the "professionals" who are urged by pharmaceutical companies to alter our lives by pushing meds for diseases that aren't even recognized by Lancet, JAMA, nor any other medical journal. What I haven't talked about much is the way you need to interview a medical professional to find out if he or she is the right type of LISTENER for your disorders and symptoms.

A friend of mine is going through a lot of the same issues I've been battling since teenhood. She is easy to gain weight, despite a healthy diet. She has very little steady sleep patterns. Her joints are unstable, and her stomach issues are creatiing pain and have no specific source for the issues. I know her symptoms first hand, as I am also someone who can't sleep, gains weight when my calorie count is in the 1200 range, and both of us are consistent at a body temperature of 97.1 or within .1 of this. She has thyroid issues. She has digestive issues. She has connective tissue issues. She's also 20 years younger than I am, and has already given up on getting any help from any medical professionals. Her care has always been during the years when HMOs and PPOs are the only source of care. As a child all the way until my early twenties, I was fortunate enough to have a personal physician- a Family Doctor. Within twenty years, the model of Family Doctor has given way to Corporate Designated Healthcare professional. We no longer have relationships with our doctors. She is a victim of this, and I can see how it is destroying her ability to trust any medical professional.

Concierge Medical Care is the newest catch phrase, but it really is the once common practice of finding a doctor you trust, making an appointment, and having enough time to talk to a person who has professional experience and is willing to use that time to help us discover the reason for our symptoms. Symptoms seem to be lost on the current health care models. Symptoms are secondary to tests. Symptoms are what we are hoping lead to a solution, a diagnosis. But we don't see medical diagnosticians. We see formulaic, must-fit-in-a-medical billing code push to diagnose. We are losing contact with the humanity of our doctors. What once was common and general practice is now an overpriced, option for the have's, and seems out of reach for the have-nots.

I am, as a disabled person, on a Medicare program. This program isn't the government run Medicare- but a contracted health organization that is supposed to help support the system. According to the 153 page package I received this month, allowing me to determine if I should keep this option or move onto a different option, I am supposed to expect to have at least 15 minutes with my healthcare specialist, can have up to four "covered" appointments, and I am allowed at least two psychological related visits per year.

My friend, who has been seeking employment for months, is on a waiting list for Medicaid, a state run program. While she waits for the approval, or disapproval, she is unable to afford any concierge visits. If she goes to a county hospital, she cannot guarantee being seen by the same doctor on any visit. And, she has to pay out of pocket. For anyone on a fixed income, this can be a decision between paying rent or finding a diagnosis. Then, once a diagnosis is reached, medications or tests become another large financial concern. My friend is too sick to afford the help she needs to be healthy enough to find a job that would pay her benefits.

The problems for most who struggle paycheck to paycheck come from doctors who don't take the time to hear and understand the symptoms a patient is trying to explain. Because the low income patients have allotted less than 15 minutes per visit, no real medical history can be documented. The battle is getting years of poor health understood by someone who has up to 20 patients to see a day, and to expect that individual attention to lead to at least relief, if not a diagnosis.

Some ways to expand the amount of time a doctor takes with us is to ensure we schedule an appointment during a slower period of the week. Most doctors are fully booked Mondays, Wednesdays and Fridays. Ask your medical office which days seem to be less booked, and try to get in on those days. Another way to be heard is to find out if the doctor has a history of taking time to read a full chart before s/he sees you. Some doctors will ask for your records, and simply not bother checking through them before you're seen. Ask the NURSING staff of the medical office if the doctor has a set time of day to read through charts prior to your visit. If the doctor is NOT a chart reader, find a different doctor, or you'll be wasting your time repeating information that is already documented.

Do your research with the internet and determine if the doctor you are considering is aware of other patients who have a similar history. My friend will likely see a doctor I spent years seeing because the office is experienced in dealing with people with my condition. Her symptoms are so similar to mine, she can use me as a referral case. YES, letting someone share your doctor and saying "When you saw Cathe you noticed she was experiencing similar issues with pain in joints, a history of insomnia, migraines, and agitation, along with pain when eating." Letting a doctor know that you're aware of similar symptoms in a diagnosed patient can help lead her to the correct tests to offer, and the right diagnostic tools to use.

Don't let a doctor dismiss your history or symptoms. NOTHING is more frustrating than hearing a medical professional say, "oh yeah, that's going around, you'll be fine after a few days." The fact is, you may have similar symptoms as someone with a flu but Lyme Disease can hide that way. Gallbladder disease can appear as Irritable Bowel Syndrome. Hives and rashes can appear to be psoriasis, or it may be an allergic reaction. Being dismissed as having something "everyone else" is going through is probably why so many people are misdiagnosed for hundreds of illnesses. For instance, a friend who has narcolepsy was misdiagnosed as having depression. If your illness is similar to common disorders, then you MUST get your doctor to hear you by explaining that this is NOT situational, it has a pattern, and you have documented the patterns.

If your body temperature is 99, and the doctor thinks that's just above normal, having a record of weekly body temperature charts- showing a "normal" for you as 97.1, you have a reason to say, "Listen to why this isn't normal for me." My left shoulder and rotator cuff were dislocated for up to 8 months one year because a doctor kept trying to convince me it was "just muscle strain from carrying a purse." To dispute his comment, I showed him photographs of the shoulder in the normal position on a Monday and dislocated on a Tuesday, back to Normal on Wednesday. Then, since he was just too stubborn to believe photo evidence, I simply put the shoulder blade in a position that was apparently and obviously just plain twisted and then back into the sockets again. After his jaw came off the floor he finally admitted that it might not be a "purse strain" afterall.

Doctors seem to be under the impression that if a disease is in a magazine or on the news that month, we're going to be sitting in the office just to discuss that disorder du-jour. A great many people probably see a disorder and assume that their illness is "swine flu" or something similarly over exposed by the media. In fact, the influx of patients who are armed with Web-MD information has done a lot to discourage medical professionals from listening to actual patient history. But, if you are armed with a family history, a documented history of your own symptoms, and perhaps even a few testimonies from family or friends that state- this is not normal for you- you may be heard with a more sympathetic ear.

Doctors also have a deaf ear to the idea that medications they are giving us could be causing other problems that appear as illnesses. Seniors are victims of this almost rampantly, with blood pressure medications given to someone who is having side effects of cholesterol medication, and then antidepressants given to help battle the side effects of sleep medications. The side effects need to be documented as soon as they appear. Just by documenting side effects, I was able to reduce my medication list from 24 different prescriptions per day to 9. I had a diary of what happened to my body after what prescription was given, and was able to show a pattern of several effects that directly correlated with new medications handed to me to combat disorders that apparently don't exist for me.

My current doctor with the Veterans Health Care office sets up one appointment per hour. That means, she spends 15 minutes before the schedule appointment to read through my charts. When I sit with her, she goes over any tests that were returned, and we also view my weight and temperature history. We go through my menstrual history to see if the depression I have is related to hormonal changes. We do this at every appointment so we can verify patterns. Fifteen minutes of the appointment is her examination to see if there have been any changes physically, mentally, and even if my appearance has changed. The last fifteen minutes is about the current prescriptions, side effects, and changes that have improved or have become worse since medications are added or removed. I see her at least once a quarter due to my autoimmune disorder, and chronic joint dislocations. Because of the documentation in my care, she can easily see when there are decreases in muscle tone, increases in calcium deposits, a change in my general mood, and if my body temperature has steadied at any particular level. She listens and she pays attention when I tell her something isn't right.

My civilian doctor hands me 15 minutes total, including the time she views my charts. She is focused on blood tests, and doesn't fiddle around with small talk. In fact, I think I've said less than ten sentences to her in the four visits I've had this year. Her documentation of my blood work is pristine, but she probably couldn't pick me out in a crowd of people if I left my cane in the waiting room. Because she is all business and no play, I hand her documents of diaries of the changes in my body, physical changes, and even comments from friends and family. She notes these, and after a few weeks, I will generally get a call stating what she sees has changed. The care is not personalized, and it feels like Jiffy-lube medicine, but at least since the homework is done for her, I know she will read through it.

The worst listener is one who is so scheduled that he will only nod at you, tell you what your condition is before you have even opened your mouth, and will shuttle you out with either a pill or a "get some rest". You are a number that fills the quota for the HMO and nothing more. If you find yourself being told your illness before you've had any chance to utter a word, fire that doctor. File a complaint with the HMO, and ask for a history of any doctor you are considering , including references. Not all doctors are working for their HMO quota, and you may find the right one will be the one that has been listening since the days before Concierge and Managed care. Listen to your gut. You'll know if you're being heard. And, if any doctor makes you feel humiliated by your symptoms or illness, again REPORT that doctor to the health care provider. You deserve health CARE not health apathy.

Today's questions- Have you felt dismissed or judged by a doctor before you had a chance to explain your symptoms? Do doctors you see prefer to look at numbers, or are you considered more than the sum of your blood counts? What have you done to get your doctors to hear you, and really listen?

Friday, November 13, 2009

Medicare Scaring Us

You probably have your new "Medicare Options" package sent by your Part D provider. Starting Monday, we're supposed to be able to manage our decisions for the following year. What every senior and disabled person battles for this decision includes-
No Increase on Cost of Living For Social Security;
Increase by up to 28% of the Prescription Plans available;
No Sanctioned Increase of Insurance Premiums
Decrease in Available Medicaid Dollars
Increase in Co-payments (ie. Walgreens $4 prescription copay for generic will be $5 in 2010).

Addressing the obvious first. This year we have more Veterans returning from war than in any time in history since Viet Nam. During the early 1970's, the increase of those who went on permanent disability due to war related illness, PTSD, and other trauma was NOT picked up by the Veterans Benefits, and instead was placed into the general funds of Medicare. Service connected and Service Aggravated illnesses and trauma are not all covered by Veterans benefits. That saps quite a bit out of the funds for those who are in disability or are retiring seniors. Veterans care is increasing the amount we must pay for our prescriptions, and are charging for services at VA hospitals where before these were considered part of the benefits of service aggravated or connected illness.

The VA Healthcare System is being used as the model for Public Healthcare, a huge political battlezone at the moment. The system is very strict regarding the type of prescriptions, treatments, care, and surgeries are authorized per patient. I know, I'm a Veteran AND disabled. I've been on both systems for nine years now. The VA doesn't bill my medicare for anything, but instead, although my information is shared with both organizations and the cost could be spread between the two, I'm out of pocket thousands of dollars per year.

If I want prescriptions that are not in the VA system, I need to see and pay for a private doctor, then pay for the prescriptions, hoping they are covered by the Part D Medicare. There are very few pain meds that are covered by Part D. For those of us with Autoimmunity issues and joint disorders, the catch 22's seem innumerable. I can use a wheelchair but Medicare won't pay for it, but the VA will pay for one as long as it's a replacement of one I used for more than 10 years and was originally Medicare paid. Okay. I can have splints and braces on my hands, but I can't get them remeasured unless I pay for the second appointment, out of pocket, but I have to copay the braces up to 80%, unless Medicare copays, which they won't because they weren't the ones who authorized the braces. Got it? Yeah, me either.

Before the Part D split, I could apply for a wheelchair from Medicare or VA and they'd split the cost, and I'd have a small copay. Now I have to reapply for a chair with both, and if one approves first, the other form is revoked, so I end up paying not only my copay but the copay the other organization would have taken over. See how this gets confusing? See how this makes no sense?

For those on Medicaid- a state run version of Medicare, you have to meet financial limits. For most people on disability, full disability, I mean, you make about $300 to $1000 a year MORE than you should to qualify for Medicaid. So the money you make from Disability, which is borderline poverty level for most people on it, means you are too rich for assistance from your state, thus making more out of pocket costs a mandate. There are people who qualify for SSI, who cannot quallify for Medicaid. There are people who qualify for SSD who cannot get SSI, (such as married people like myself). If anyone thinks this government insurance system which we paid into is a hand-out- they're very wrong. They don't get that mose of us on disability had normal working lives, and had to work at least 20 years to qualify. We aren't sitting around eating bonbons.

Those of us on disability spend hours in physical therapy, sometimes psychological offices, oftentimes trying to find out how we will survive from one check to another. Homeless Veterans make up the largest number of people living on the streets, and without a permanent address, these heroes can't qualify for benefits. They aren't asking for a handout. They earned their place in society. Minimum wage doesn't prevent an adult from living in a hallway or a bus stop. And, being homeless doesn't mean being jobless.

Here comes the time of year when those of us who are trying to manage just being able to sit, stand, or speak in cohesive sentences are handed a book of options. The options are supposed to help us figure out how we want the government to best allocate our funds to pay for medications which may or may not be covered on the Part D of our insurance. I am on Morphine, an antidepressant, and a sleep assistant drug. Only the Morphine is covered, via the VA. I cannot get it through my private doctor. Only the sleep med are covered through the private doctor. Because both are "Controlled Substances" I sign a contract with each doctor and both pharmacies pull my records to ensure I don't double dose. If a doctor wanted me on a different medication, I may have to wait up to three months if it isn't on the approved list. Knowing all of this makes it very difficult to simply check a box and mail a form into Medicare.

I don't have Diabetes, high blood pressure, or a myriad illnesses that come with age. I will someday have some of these, as is the family history. Without the Medicare assistance, the cost of my health is upwards of $500 a month, because I have VA assistance. Without the VA, I would have a cost of about $1200 a month. My pay is nearly just that. I would be a homeless Vet if I wasn't married.

I don't know how you live your life, but it is my greatest honor to speak with senior citizens. I know the struggles they face. I face them too. It is my greatest honor to meet another person in a wheelchair. I don't know what they do to survive, but I'm doing it too. I know I'll try to elect the right choice that offers me the most of my medications and allows me the smallest of dignity.

Today's questions. Are you disabled and battling the big Medicare Question? Are you a senior and not sure what to do with the lack of COLA? How will you change your medical care this coming year?

And here is the rest of it.

Friday, November 6, 2009

Tears and Empathy

A lot can be said for a friendly cup of coffee with someone you care about. There's a lot to be said for people who just want to be heard. The issues that many of us who face depression come from places that are chemical, genetic, situational, and even diet based, can often be alleviated by being heard- really listened to- and through the shedding of tears. Sometimes I wonder if the answer to milder forms of depression area as close as the ducts in our eyes.

Tears that come from emotional release have a different chemical make-up than those which come from a reaction to an allergy, a response to an onion's odor, and just about any other form of crying. The emotional tears release a remarkable number of hormones in that salty flavored water. The hormone that produces lactation in women, prolactin, is higher in emotionally created tears. ACTH, adrenocorticotropic hormone, is one that appears to go haywire in people with adrenal issues. Lab numbers in those who have thyroid disorders, and adrenal disorders include measurement of ACTH because depression is so prominent within those conditions. Leu-enkephalin helps work almost the same way morphine does, by alleviating pain, and it is released in emotionally derived tears. When someone says, "You'll feel better if you can cry" they're not yanking your chain.

Like most people who have battled depression, I've gone from feeling as if the sadness was manageable, to feeling like nothing would ever be better, ever. And, like most of us who have depression, I was put on medications before learning if the illness was a manifestation of a side-effect of another medication, if the depression was a matter of female hormone fluctuation, or if it was a symptom of a bigger illness. The problem isn't always the doctors, but it isn't always the patient's either. It is clear that the medical profession has no idea what it is that causes mental disorders like this.

A couple of years ago, a university in North Carolina made it a point of describing Efficacy Rates of Antidepressant medications. Most of us are familiar with everything from Amytriptaline to Zoloft because we're given them to try out- not to see if the medication works for us, but to see if the side effects are tolerable. I remember that Lexapro, Wellbutrin, and Zoloft each made me feel like my skin was crawling, I was agitated, and that nothing was happening fast enough. Whereas, Prozac, Paxil, and Celexa were just making me swell up rather than calm down. I finally settled on SAM-E, partly because it was available without prescription, and partly because it seemed to have the same affect on me that Prozac had without the bloating feelings. I also could take it for a few days at a time, rather than weeks at a time, and feel just as fine. It's probably a placebo affect, but rather than argue that point, I accept that I feel fine on it.

But just as some people like chocolate, better than vanilla, some people prefer blondes to brunettes, some people are happy in the morning and others are night owls- none of us seems to have a single response that makes one pill the answer to depression. My husband shakes his blues away by running at the gym, or having a piece of chocolate. Both give him a satisfied feeling and he seems much happier- except when the chocolate is gone. If I started running, the knees would be so mangled after just a few steps, I'd be more depressed. His answer isnt' mine, and my answer may not be yours either. Except in the case of tears.

A year ago, Science Daily posted an article regarding the power of human tears. It points out that those who have serious mental disorders don't seem to have the same emotional release from tears, but those who are experiencing situational depression and sadness can feel better by crying. Yet some studies state that crying is gender specific- men don't do it, women do. That's simply not the case. The chemicals in depression that cause us to cry don't care if we're male or female. We decide if we are able to cry- in front of others or not- and sometimes our emotions are better accepted if we are female than if we are male. Women are "allowed" to cry. Men may just be better at hiding when they do it.

This comes back to the first paragraph, the title of this week's blog. Sympathy is the ability to feel something for someone based on your own understanding of the human condition. Empathy is the same ability based on shared experiences. Men who sit together and talk with a friend, a spouse, a family member- who need to feel human can and do cry. Women who want to share feelings, who can't express them verbally, and just need the release can and do cry. And, if you're like me, sometimes sitting alone at a beach, or taking a walk, or just being alone for a few moments gives you that key that unlocks tears. The cathartic feelings that flow with those tears are priceless. It can be moments of release or it may last for weeks, months, years. It's just a matter of letting yourself be empathetic- to yourself. It's not a cure for depression- it's just a bandage that life has built into our biology. Sometimes that bandage is strong enough to help us get past the roughest of slices into our psyche.

This week's question- What makes you cry? What do you feel like after you cry? Do you know men or are you a man who likes to let out tears?