I need to be able to trust you. I am not a healthy patient or I would not need your services. I need to be treated not only medically, but also with respect and dignity as a patient in your care. I need to be regarded as a valuable human individual, regardless of my age, gender, ethnicity, financial status, or any other defining characteristics. I have rights as a patient.
As a patient, my needs come first, not your reputation. Not your “scores”. Not your time. Not your students. Me. I am ill… and the honest truth is that when treated well, you could not ask for a better patient than me, because I want to take care of myself. It’s just that sometimes I can’t do it on your schedule, because your schedule does not exist in my daily life. Mine does. What exists in my life is bills (besides the ones from you), and expenses like food, fuel in my car, house payments, all other manner of care items from taking care of my fragile hair down to clipping my toenails that seem to be getting harder to reach each year. What’s important to me is getting my tires rotated, changing the oil, and wondering what that noise is that is driving me nuts every time I drive somewhere. Important is trying to keep dishes washed, and make sure I don’t run out of things like drinking water, healthy fresh foods, and basics like bathroom tissue and toothpaste. It’s critical that I can fill the medications I cannot go without, and get the supplements that keep me feeling reasonably functional. Those are just the financial stresses (and add into that the unexpected emergencies, and things like dental and eye care that I really can’t afford anyway). That doesn’t account for what my entire day is like, from waking up feeling beat, and trying to brush my hair without dropping my hairbrush, to worrying about aging parents and growing godchildren that I have so little energy to give time to. My day… my world… is about all of those things before I even cross the threshold of your office. You’re a blip on my radar, and yet… I give you undivided attention and time once there. I deserve the same in return.
I’ll reiterate: As an individual, you could not ask for a better patient. One of you once told me not to expect. Not to expect much recovery. Not to expect improvement. They used the word “permanent” (damage), and they were wrong. So why should I trust anyone now? Yet… I do try to do so. I have proven that I am dedicated to taking care of my health (and my heart) by proving that bad prognosis wrong. By exercising, changing the way that I eat, and taking the right meds and supplements… by doing what I said I would do. To act like I won’t is an insult, and because of my life which keeps happening when you are not around, I cannot help that sometimes it takes me longer than you wish it would to get some appointments or tests done. I don’t always have the money. I used to have great health insurance, by the way, Doc. I had it covered. Now… the insurance carrier is the only one that seems to care less than you do. I pay, and I pay, and I pay… and they don’t pay. So yes, it takes me time to set aside enough to take care of what YOU want done, and it’s not my fault. I’m doing the best that I can. I’m human. While you are considering that statement about me being human, please realize that my medical needs don’t stop while I’m struggling to meet your personal guidelines of what you think has to happen. Holding medication refills hostage seems to me to fall into a malpractice category of failure to treat. That seems to be the new practice too. “Sorry you can’t afford to see me AND refill your meds, but you have to see me… even though you won’t be able to pay for the refills I will give you after you’ve run in and out of my office several times a year.” I’d like to hear you just say it that way once to be honest. Apparently that’s my problem, not yours, so you can’t be bothered to help with it. I’m doing the best that I can… so, why aren’t you?
By the way, your veneers are great. You have a beautiful smile. I’d like to get some work done myself that is concerning so I can chew without pain. I’m willing to bet I can’t afford your dentist, so I don’t need a referral on that… thanks. But you.. you look great.
There was a time, Doc… when physicians worked with their patients and listened to their needs as an individual. Humanity has been shoved into a crate and warehoused. While I choke on my $45 copay, remembering when it was $25, you’re happily cashing in on the $450 you charge my insurance company and I guess because of that… you think it’s chump change I’m putting out. That $45 is a tank of gas. It’s a week of groceries. It’s my water bill. It’s some basic and essential need.
I live with a stress-triggered illness. You and your agenda should not be a source of stress for me. Your job is to assist me in staying well and reducing stress, but these days it seems like you are working overtime to make my life even more difficult. Try not to forget that when I leave your office, I have to go home and recover from the fluorescent lights, exposure to noise and temp changes, and unfamiliar environment, and people poking and prodding and asking intrusive questions, and feeling like a guinea pig… and I started off tired so now I am exhausted. Believing that you are at least sensitive to how this visit will demolish the rest of my day would help. I only have enough energy for just so many tasks per day. Doctor appointments cut into the energy for the next day as well as this one. That’s a big deal in my world.
In this… I am not unique. Everyone needs a care provider that actually provides care, and that they can trust, and on a daily basis I am seeing less and less provision for needs. Stop blaming “guidelines” and insurance companies and take personal responsibility for your own actions, Doc. Compassion and respect don’t cost you a dime and they should be part of your routine.
The 1.5 Million Lupus patients in the United States
Y’know… it’s funny. I mean odd, not haha, or “that way” kind of funny. I love many things about my friends but sometimes I see some unattractive traits that are truly dumbfounding. People don’t need to be cookie-cutter, don’t get me wrong – I’m the first one to encourage individuality and say vive le difference! It’s just when I see unpleasantness over trivialities, it’s disheartening. Maybe it’s merely the difference in how we see things, and what is trivial vs. important to us each uniquely. I’m taking a minute however, to put my perspective out there.
I’ve been an activist. I still have my causes, though some have morphed a little. I still stand up for what I believe about Native rights and incidents around that. I still say free Peltier, and with conviction and sincerity I believe in that. I’m still an avid conservationist, preservationist, nature-loving, culturally immersed, red earth Indian woman that I have always been. I also still say that casinos are the worst thing that ever happened to us, and it’s a shame that sovereignty has become all about having one. I’ve seen the ugliness. I say all that to point out that I know what it’s like to have a driven political motivation.
I’ve said many times, many places, “They all suck!”. I mean that. Not one politician ever born is perfect, because man is not perfect. I believe that power corrupts, and I believe that in giving them SO much power, we have allowed corruption to run rampant. I don’t think any of us really know what a Democracy should be – not our generation – though we think we do. It doesn’t run as it should. We all know it and nobody wants to admit to it. All the things we supposedly “don’t allow” in this country just happen in a clandestine manner, but they still happen. Let’s just be real. I don’t really care to discuss how that can be fixed because I don’t believe that it can be. It just is. Those that feel they have the life energy to work on it, I encourage you to follow that calling. I don’t have it.
I could tell you what my party orientation is… but why? It doesn’t change who I am. I’m the same person you’ve always known, whether it’s been 20 years or 20 days. I don’t ask people what theirs is because I’ve never felt the need. It so doesn’t matter. I don’t even look at party when I’m watching what a politician does in office – and for the record, I don’t care what they do at home. I really don’t. I don’t want them looking into MY home life, so why would I look into theirs? Too many people these days are screaming a double standard when it comes to privacy. What I care about is how actions affect me, and that my friends is not based on being a Democrat, a Republican, a Libertarian, or anything else. It’s based on your basic ability to show concern for the rest of humanity. What I want to know about another human person is whether they are passionate, compassionate, sensitive, generous, intelligent, intuitive, and that their actions effecting others have a moral base… of some sort. Honesty. If you know me, you know I value that above all else. I also don’t believe we should hunt public figures like an angry mob with torches for personal information to the point they feel backed into a corner and must lie to protect themselves. That’s insanity at it’s best. It makes the aggressor’s just as guilty.
I don’t make it any secret that I’m unhappy with the current administration. I would be lying if I did that. I have to state plainly however that it has nothing to do with party affiliations. It has everything to do with how it has affected me, personally. I can past a lot of flaws, and accept that no human is perfect or will please everyone in that office. I cannot accept a massive number of flaws being flaunted and a blind-eye turned to the harm being brought to many people. So let me tell you a little story….
I used to have Kaiser for my health care. They had their issues, it’s true. I screamed about a lot of problems there but I was able to make it work, and more than that my medical needs were met at any hour of the day or night that I needed help. The records were accurate and accessible, and the Drs had decent educations along with great medical equipment for testing and treating their patients. The facilities were clean and orderly, as well as in good repair, and there was sufficient staff at them all. In the end, the only real issue I had there was this one primary care physician that was dismissive and self-absorbed. I believe I could go back to them and choose another pcp and get along just fine. I had a FABULOUS rheumatologist that worked with me to find answers, and respected my education deeply. Kaiser even covered acupuncture. That’s progressive and beneficial.
I don’t have Kaiser anymore. I have Aetna. Aetna thinks acupuncture is unproven and will not pay for it, in spite of testimony from former physicians that believed in it and evidence that it was helping me with the Fibromyalgia. Aetna also has a network of physicians that is an absolute circus to navigate, and I am constantly fighting not only to find one I don’t want to whack upside the head but that I can actually get an appointment with in less than THREE WEEKS MINIMUM when I call! Can you tell I hate Aetna yet?
Why do I have Aetna? Well, the household income-providing employer played “chicken” with Kaiser as they usually would in yearly contract renegotiations… and lost. Kaiser said they wanted a 20% increase, the company said they wanted 5% as they’d gotten in the past, and Kaiser said basically “screw you, 20% or byebye”, and that was that. Being that it would have translated to another $100 a month for us on top of the already $75 a week… the company decided it wasn’t affordable and Kaiser went POOF. Now don’t get me wrong on this either, it was alot more money and would have hurt us. I believe however in having CHOICES. At no point has this company offered choices. Well… you have a choice. Insurance or no insurance. So we end up with Aetna, which has forced all employees to switch Drs a minimum of 3 and as many as 7 times in the first 4 months of having this package just trying to find someone with a brain to take care of their families. I would rather have the option of having to find a way to come up with more money if it means better medical care. I have some very serious needs. What is it costing us if we’re not treated correctly?
Why did this happen? Obamacare. There, I said it. The insurance companies became so worked up over the fear that they would not be able to raise rates later on that they panicked and drove the cost up to a ridiculous degree immediately. The end result was I could no longer afford the health care provider I’ve been with for SEVEN YEARS that has all my records and information, and the Drs that got me some reasonable diagnoses and help finally, and all the nice clean buildings and available staff that I need for my many, many health difficulties. You see… this affects me, quite directly. It hurt me. It’s still hurting me now, many months later. My medications cost more now too. That hurts me. Change. Yeah… we got change alright.
I’m just one woman. I run a private support group and am a member of others, and they are all full of women and men alike being harmed by this situation on a daily basis. We are people waiting for a cure, and in the mean time clawing desperately for a better quality of life for as long as there is no cure.
Be unique and love the differences, my friends. Just be aware of what your chosen representatives are doing to your friends and neighbors lives before you yell so loudly how righteous you think their causes and actions are. Admit to their failings like an intelligent and honest person should, and let those of us that are suffering know that matters to you on some level.
So did anyone want to ask me again why I hate the current administration so much?