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
Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t! The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all. We’re not special.
Here are some remarks I ran into on a popular page this morning that set me off:
I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea.
[My thought on this is that someone is lying. You NEED to exercise, and unless you are a quadriplegic, you have no excuses. It doesn’t matter whether that means just taking a walk, or raising your arms over your head a few times, or wiggling your toes, MOVE YOUR BODY! If you are sitting around, doing nothing, you’re hurting yourself worse than taking a medication ever could.]
-I refuse to take drugs with their unwanted side effects. I suffer with my pain. Taking drugs to ease my pain will only kill me in another way. Nope will just deal with my pain even when it gets unbearable!
[Clearly this person has never hit “unbearable”…. I have.]
-I so agree. Pharmaceuticals scare me to death.
[News flash, your heart stopping can kill you too. Some pharmaceuticals do serve a purpose.]
-You be never had a kidney stone.
[Someone with experience and an intelligent comment.]
-I’ve never had a kidney stone, but I have a dislocated shoulder that destroyed the rotator cuff and has been this way for 12 years, I’ve also broken my back and wrist and the only drug I took was aspirin… and not Bayer as I refuse to support them.
[I didn’t realize we were in the company of such greatness. I’m not worthy. *bows down*]
You will not get kidney stones, [name omitted], if you are on a healthy diet.
[Well, if that’s not the biggest bunch of hooey I’ve heard all week, I don’t know what is.]
I believe the only medicines we need god gave us is water and vegetables. We don’t need to feed drug companies pocket when all they do, is help kill us with their chemicals.
[Belief is a wonderful thing. Let me know how that works out for you when your genetics catch up with you, because they get everyone sooner or later. Birth is a death sentence, and these imperfect bodies DO break down, whether it happens when you are 9 or 90. It happens.]
The only medicine the cures anything when properly used is antibiotics, the rest of the 250million medications in the Physicians guide only treat symptoms.. Hoping that your body will heal itself before whatever is wrong wears you down.
[I can’t even make a sarcastic remark here because that was so ignorant that it speaks for itself.]
Here is how I finally felt compelled to respond to the stream of ignorance:
[Name omitted] – and the rest of you holier than thou commenters, shame on you. I AM minimally medicated, and I AM one of those proponents of eating whole foods, anti-inflammatory, avoiding preservatives, and anything else you can think of and I DO THOSE THINGS consistently in my life. I promote it, I teach my friends about it, I live it without deviation, and it has given me back a lot of my life.
How dare any of you smart off about chronic illness, not understanding what that life is like? How dare any of you have an opinion about how someone else needs to handle their issues? Do what YOU do for YOU and stop being so high and mighty. Chronic illness, such as LUPUS (which I have, among other things) is not curable by medicine or by how you eat, either one. It requires a genetic predisposition that you are born with to even develop it in the first place, and it’s not coming from modern “agra”, or “pharma” either one, as the disease existed long before those came onto the scene. Education is a wonderful thing! Get some. Triggers that put rheumatic autoimmune diseases into motion vary, and I will only agree that there are *some* modern conventions that contribute to it, but they did not create it. In the end, the result is the same. You have a disease that isn’t going away and can only be managed. I have done pretty darn well for myself too, going from unable to walk in 2006 to I’m out hiking again in 2014. I am not however a professional athlete, and never will be. I still have to manage my energy levels, consider how I feel at each given event, week, day, even moment, while I make my decisions about activities. No one else can do that for me, and no one else can tell me HOW to do those things. It’s my own responsibility. It is also my own responsibility to now take a beta blocker because my heart is damaged. Eating right isn’t going to fix that issue, nor will it make the hereditary palpitations or dysautonomia go away. It takes *both* a medication and eating right (and knowing how to reduce stresses of all types) to manage that condition.
Some of you act like I should throw my pills in the ocean. If I do that, I’ll be dead and you won’t have to listen to me scream about this stuff anymore. I guess you would prefer that. In the mean time, I will be so crippled up that I won’t be able to walk and possibly not type much and you still won’t have to listen to me. Is that your goal? I take Plaquenil (a biologic) to manage my Lupus symptoms because my pain levels were too intolerable. Let me say this about that… I can take a lot of pain – probably a hell of a lot more than many of you. I also eat correctly now to deal with inflammation and everything else. At the end of the day however, some of us just have such severe conditions that we need a little assist. That is what medicine was always supposed to be. An assist. That’s how I utilize it. Does no one understand “happy medium” anymore? Anyone? Anywhere? Even ancient medicine as in my own culture (Native American) is still medicine and still utilizes chemical compounds from plants. I have training in that as well, but it’s not sufficient to manage what I live with. That’s the bottom line. I enjoy being able to walk. I enjoy not having my heart stop suddenly. It’s the little things, eh?
If it’s possible for an individual to entirely eschew medication, then I am always happy for them. I even have friends with Lupus that have been able to do that – for the most part. One uses the very occasional pain med when it becomes so unbearable that she cannot even sleep for days on end. Another is going through a recent flare due to terrible life circumstances, and has had to go back on some other meds TEMPORARILY. She does not see it as a permanent switch back. I respect those choices, the same as I respect the choices of those that want to just suffer (though I find it insane), and those that are able to manage without any and feel better, and those that stay on more meds because it is all that has worked for them. We are all individuals, and all on a path, and all learning, and none of us have a right to turn our noses up at the necessary decisions that others make. You are not in my shoes. You do not know my pain. You do not know how my own body and mind process that pain. It is the height of arrogance to tell someone else that they should do precisely as you have done because you have it alllll figured out. [Name omitted] is 100% correct here. Chronic illness is a beast that you cannot understand unless you have lived with it – yourself or a close loved one, either.
[Name omitted], not everything is curable or 100% manageable with eating the right food. That is a fact. You can improve your conditions, and symptoms – and I will even say that you can *always* get some level of improvement by doing so. That does not mean that it makes every single condition go away, or improve enough for everyone to function the same. We live in flawed, imperfect bodies with very individual needs. This is not a one size fits all scenario. So try developing a little compassion for the needs of others.
Why did I write such a long comment? Because I am fed up with seeing ignorant remarks like this and a bunch others on this thread. I am happy for anyone that has been able to get better results, but you all are not representative of the entire population. I bust my a** to “eat right”, to exercise (as much as I am able and sometimes more than I should and I pay for it), and adapt so I can live my life, and do more than I used to, and encourage others to do the same, and stay in a positive and hopeful mindset, and set fantastic goals, and everything else you could possibly come up with, including consuming turmeric, pineapple, avocado, and everything else you could throw at me…… BUT….. sometimes we need a medical assist. Let’s try to show some respect for those that do and stop putting them down for wanting to stay alive and be able to get out of bed in the morning. We all do what we are able and continue to learn along the way.
Yep. I said it.
We are all as unique as snowflakes. We have different DNA patterns, different flaws and imperfections, different advantages, different experiences and exposures, different environments and life paths, and our outcomes and needs are very individual. Along the way, we can only make comparisons. We can find others with whom we identify on some level, in some area, but no one is a carbon copy of another – not even identical twins. There are no living clones at this time, and even if it does ever happen they still will not be precisely the same once they have taken a few steps into life and had experiences and exposures in this world. That is the wonder of life itself. Embrace that, and you can get on with it.
I lost an old friend recently. He hit “unbearable” and just couldn’t anymore. I have been there myself, as I said. I grieve the loss and what could have been, but at the same time I cannot judge. There is not much I can say about it other than that it hurts deeply that he is gone, and that he felt that he had to just let go of life. Anyone that cannot understand what goes through a person’s mind at that stage has never been there themselves. The words are used far too flippantly these days. R.I.P., my friend.
*** [Edit – additional thought]: Just as an added note, regarding pain (which is not the only thing people take medication for, and “pain medication” is not the only kind of med that treats conditions that cause pain)…. Pain, when intense and intractable, causes stresses on the body that in turn causes damage. Just for information sake. There are valid reasons in some situations for treating pain. While it is inspirational to see someone able to tolerate and push through, it is NOT the right choice in all situations 100% of the time. Adrenals become exhausted, blood pressure spikes, and the constant stress can easily elevate inflammation levels. Continuous pain without relief is not a healthy condition. It even interferes with reparation processes for healing. Lack of sleep resulting from severe pain does even more damage than I can go into here, including screwing up hormone balances. It’s complex and to be taken very seriously. So if you think butching up and bearing all of it is impressive…. it’s not. Know when enough is enough, please.
The Walk to End Lupus Now in Los Angeles is this Saturday, September 28th. I am a member of the Big Bad Wolves team, lead by Nicole Masry McAdam.
Thank you to those that have so graciously donated for this LFA event, and to any that might still today or tomorrow. <3 Your help moves us closer to better answers for Lupus patients everywhere, one dollar at a time. If you are able to help, the link is below.
It doesn’t always make you a popular individual to draw a hard line when it comes to diet. (Refresher: that word refers to “what you eat”, not a prescribed outline like being “on a diet”.) Dietary choices – and choices they are – will make a difference in every aspect of your daily life. They determine how you wake up, how you walk through your day, and how you go to sleep at night. They’ll have effects on your level of concentration, energy, and emotional state throughout your day. They’ll have effects (positive or negative) on your sexual function as well. They’ll change the way your skin looks and feels, your fat distribution, the type of fat you carry, the muscle you build or lose, the health of your bones and connective tissues, the condition of your hair and nails, and ultimately even your unseen cellular repair and regeneration rates and quality. That’s the center of what we are in body. It’s our lifespan and the quality therein.
Quality of life is of extremely high importance to me. I am a Systemic Lupus and Fibromyalgia patient. I am also a heart patient. I never thought that I would be saying at 45 years old, “I have heart disease.” I spoke just now about choices and diet, but I want to be clear that I am deeply aware of the factor genetics play in our physical health and make-up. It is however a tremendous problem in today’s society that people are blaming such a large portion of their issues on genetics. MOST things are predispositional, and can be managed with good choices and self discipline (and a drop or two of adaptation to live by). I have some inspirational figures that I look to when I feel blocked or weary, and they are not just people that have disadvantages. They are people that have adapted and beyond surviving, they THRIVE. I don’t believe in merely surviving. I know a lot of people that feel that is all they do, and I do understand what it is to have utterly overwhelming pain and dysfunction that makes you not want to take even one more breath. I was there in 2006. I am still here in 2013, seven years later. I no longer feel that every breath is a chore I am uncertain I wish to undertake. I had to make changes for my quality of life.
I was at my rock bottom then. I couldn’t stand for more than few seconds. I couldn’t walk because the pain was so intense. I couldn’t sit in a chair to eat a meal. I couldn’t drive. I couldn’t crawl to the refrigerator because my floor was hard tile and it hurt too much. I had to have food set within reach for the day before I was left on my own, and that went on for months on end. I was on multiple medications just to keep me from screaming, and not one Dr would give me a cortisone injection or suggested any lab work for a more involved problem that “a bad back” (it wasn’t a bad back.. not entirely). I went through so many flares before I ever knew anything about Lupus, or even heard the name “Fibromyalgia”, and for many years all I could do was take to bed and take pills when this happened. Anyone that knows me knows that I don’t like to take medication if it’s avoidable. I was at the point of unavoidable. Seven years later, I can say that yes I have prescription pain medication if I need it but I am no longer on daily doses. Yes, I take Plaquenil for the autoimmune diseases but I am on a low dose. On occasion I need a steroidal med for a flare, but really not often. For my heart… unfortunately, I am probably stuck with a beta blocker for the rest of my life. I have a careless insurance/medical provider corporate entity that shall remain nameless to thank for the amount of damage I sustained, undiagnosed for 2 years worth of complaints. In the aftermath however, I will still adapt and keep living. It is a choice I make each day when I open my eyes.
I see people every day in my online travels, both autoimmune patients and those who are not, that rave about “treats” and “yummy recipes”. I see pictures of things that turn my stomach to even look at, and to my dismay the ensuing comments and applause are all either “I love that” or “I miss that”. It saddens me, because in many cases I know those same people will in short order be complaining about how ill they feel. A relatively healthy person may indulged or over-indulged and say “I know I’ll pay for that later.” That itself is tragic enough, being an intentional carelessness committed with the knowledge that it is self-harm. When I see someone that is not only diagnosed with a chronic illness of epic proportions, but knowledgeable about what those unhealthy choices will do to them, I find it appalling. I’m taking a hard line today. I love my readers. I love my friends. I love my extended family around the web. I want you to have the same and better quality of life that I strive for every day. One of my very favorite quotes in the world is from Sean Stephenson. “Pain is inevitable, suffering is optional.” We make choices every minute of every day that will have a banked effect for good or bad on whether we are going to thrive, survive, or suffer. Which do you want?
Jelly donuts, cake, and candy no longer appeal to me, even in the short-term. I will always be honest with my readers. About once a year I have 1 or 2 plain donuts of some kind. It always reminds me of why I don’t eat them too. When I “crave” something, it’s (99.9% of the time) something like avocado, cucumbers, tomatoes, spinach, various fruits, and sometimes specific types of meat, or nuts. I have allowed myself to become in tune with the nutritional needs and the cravings do serve a purpose. Craving sugar is not a meaningless “I have a sweet tooth” thing to joke around about. It is a symptom of a nutritional imbalance, and it can be controlled and channeled properly – and believe me, it will change your entire life. This is like the story about which wolf do you feed? Feed that sugar thing, and it will take over, guaranteed. The more highly processed it is, the worse it will be. Making the wrong dietary choices is – and I know this is blunt – not only a slow suicide, it is a choice to reduce the quality of life you have now as well as when you are 90 and someone has to help you.
NO, food is not “all you have left”. Food is sustenance, and a means to an end. It is medicine, and it is life. Not Lupus or any other illness or disability can remodel your life into a waste unless you allow it. It may not be the life you envisioned, or the path you thought you would have, but it is still a temporary and amazing journey that you have great opportunities to influence. I will never tell you that I do not commit indiscretions. I just told you about my once a year donut. When I say “rare” however, as you can see, I really mean RARE. I am leery of people that say “never”, and I offer the people in my life the same thing that I expect in return – respect, sincere care, and honesty. Don’t let yourself be a slave to your plate. When you’re done cleaning it off, what awaits in this life you that you may be missing out on unnecessarily? No matter your age or upbringing, you can learn to love the right choices. We have to work with the hand dealt to us. Let’s make a better life out of what we are given and find ways to thrive.
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?
Dr. House says that “everybody lies”. If that’s really the truth, then why are we placing our trust in physicians so deeply that are nothing more than another human being capable of a lie? While I believe there is an element of truth about the lies (haha), I don’t believe it is an unavoidable character flaw. Unfortunately, there are a massive number of patients that do withhold pertinent information from their physicians. As a result, they don’t even have an accurate picture of what the truth IS. I’ve said for years that men don’t know what 120 lbs really looks like on a woman, because most of them lie about their weight. I never do because I just don’t see the point. I look how I look, and speaking a number won’t alter that for good or bad either one. As a general rule, I don’t lie to physicians. What would be the point?
I say “general rule” because it is true that everyone commits omissions, even if it’s not intentional. It can happen. I do not however leave my Dr’s office and snort down a Big Mac, super sized fries, and a HFCS-laden soda. Yuck? When I tell him that I eat fresh fruits & vegetables, organic as much as I can, lean meat, wild caught ocean fish, omega rich cage-free eggs, almond milk, lowfat yogurt, dark leafy greens, nitrite-free preserved meats, nuts, berries, cook with canola & coconut oil, and drink water most of the time… I’m not kidding! If I do not do those things, I pay for it most readily. Most people may get away with it for a while but I can’t. So why would I do that to myself?
Dr’s are jaded by the untruthful lot. I know this. You would think after a few visits though, they’d get a clue and treat you with a modicum of respect. What can I say, I expect it even after years of not getting it.
Drs… lie. So I’ve spent a few days in serious distress over the idea that I’m stuck with a permanent type of damage to the left ventricle of my heart. According to my Dr, nothing will improve it and all you can do is try to prevent further damage by lowering your blood pressure. Well guess what? I READ. Not only have I found there is a medication that can offer (over time) reduction of LVH, but I’m a prime candidate for it. Beta Blockers can trigger asthma, and worsen Raynaud’s Syndrome – both of which I have. Losartan not only isn’t an asthma risk from anything I can find, but it is used to treat and improve Raynaud’s AND has some anxiolytic potential (treats anxiety). It’s in my record that I have anxiety disorder. Do these Drs not read what’s right in front of them?
I wish I knew why this information was withheld from me. One thing is for certain… come Monday, someone is getting a piece of my mind.
If you have LVH/cardiomyopathy and haven’t been offered alternatives to a Beta Blocker, ask your Dr about this medication. I will be.
Am I relieved? Sure, in a way. Am I sad, kind of. Am I scared? No, not really. Nothing has changed except that some person decided to get with the program. Sad, only a touch because you really always hope that some Dr. will walk in and say “Well, Ms. So and So, you have Blahblahblee and if you take this pill for a few days, it will all go away.” Not really hope, just a nice fantasy. Secretly though, we all wish that a Dr. would DISprove to us that we have something incurable and say something truly encouraging instead. Right now I just kind of wish I still had access to the rheumatologist that showed me the most that he cared about me for real, and spent so much time with me trying to get me back pieces of my life. Instead I have to navigate a half-assed system paid for by half-assed insurance, which altogether makes for one big complete ass, I think. Peachy.
Where is Dr. House when you need him?
Wouldn’t it be nice to actually hear, “It’s not Lupus… it’s never Lupus.” and get another diagnosis that’s just easier to manage? You know, one of those stupidly simple things that the team overlooks through a bunch of other failed treatments and then they all go Oooohhh DUH and fix it? Our choices seem to be Lupus or Mystery Disease. Yay. I can definitely accept Lupus better than Mystery Disease though.
Now that it’s in black and white, even if the current Primary isn’t on board, his opinion really doesn’t make any difference. I’m thinking of laminating this piece of paper for posterity.
The eyes of the world are on us right now. The media has put a banner out about Lupus because of this new medication, Benlysta, and people are listening. It may be for only a moment and within it is the time to use your voice.
It could be one person. It could be 20 people. It could be face-to-face with the people you see every week at the grocery store, or work, or school. It could be people that you socialize with online. No matter who it is you talk to, those of us that live with chronic illness are the ones that have to make a difference and be heard. If we sit back and take the presently accepted treatments, and don’t ask for better answers, then no one will see that there is an urgent need for more.
Fibromyalgia doesn’t even really have a good solution in western medicine. Antidepressants are an approach of mediocrity, considering you’re addressing a symptom and not really looking for the origin. The best results I’ve gotten came from Acupuncture that I can no longer afford, thanks to Aetna’s antiquated belief that it is unfounded, unproven, and without any sound scientific basis. At least Kaiser with all their many issues covered it. Insurance companies are part of the population that we need to assault with educated information. They’re depriving us of the very things that will give us real relief.
Regarding the present voices of disappointment with Benlysta – and there are many… let me point out that it was not originally intended to be a Lupus medication. It was being researched for Rheumatoid Arthritis. It treats what is considered the “mildest” form of Lupus (as if there is such a thing), where there is primarily joint pain. I have that joint pain, and let me tell you that there is nothing “mild” about it. It’s the reason I couldn’t walk & could barely get on my feet for a minute at a time for half of 2006. It’s the reason I am no longer hiking and rarely take walks. It’s the reason I’m slow to get out of bed every morning, and the reason some days it’s hard to even use the keyboard at my computer. It’s the reason I can’t run a vacuum cleaner on my own, and have difficulty opening jars in the kitchen. It affects every aspect of my daily life negatively. It doesn’t even stop there. Show me someone that has one single autoimmune disease and I’ll say it’s a white elephant. They show up in bunches – usually at least 3, and quite often more. So to say it’s “just” connective tissue disease, no organ involvement, is a sad underestimation of what’s going on. This new medication could give some people their lives back. It can return willing individuals back to the workforce where they want to be. It can give a mom the ability to care for her children without assistance. It can alleviate tremendous suffering. I know, because I know someone that has had that kind of answer to prayer from Benlysta.
Stress aggravates this category of disease tremendously. If we relieve one aspect of it, the rest may calm down as well. Some people even have the misfortune of having more than one type of Lupus. Taking control of one gives you the ability to better focus on managing the other.
I get it. I get that for some people it’s sad to find out that this is not their answer. Oddly, I’ve spent the last several months believing it wouldn’t be for me, and now I find that it might in the future be just what I need. We however are not the people to be elitist about who has a greater or lesser need. We’re a pack of wolves – survivors – and we have to be sensitive to the individuality of each member. We each have our strengths and our weak points, but all are equally important.
Each step in research is one of rejoicing, for it brings us closer to a cure. I may not see it. You may not see it. Someone, one day will.
I tell every Dr I ever see the same thing when I first meet them. If I call you, it’s serious. I don’t run to the Dr. for every bruise and sniffle, so if I leave a message saying I need in, it really is right-now urgent. I don’t kid about that and I expect them to take me seriously. This woman rarely even saw me up until I got fed up with the pain and stiffness, and episodes where I could barely walk. After going through a carnival of horrors with my HMO in 2006, I hadn’t wanted to deal with any of them again. I knew from experience they would 1. Refuse to give me a cortisone injection for no good reason, 2. Send me home with pills – most of which I can’t take without severe digestive distress, and 3. Maybe send me to physical therapy if I yell about it enough, but it won’t do me any good in the long run. Since the discomfort is now affecting my hands, I really can’t ignore the problem for their convenience anymore. After a friend gave me more info than I’d have gotten in a decade of dealing with my provider, I requested some tests. It was then that this positive ANA popped up. It didn’t surprise me by then. I expected it.
Unfortunately, Drs don’t like educated patients that expect certain results. My feeling on that is basically, ‘cry me a river because I don’t care‘. I’m not going to play dumb for anyone because, I’m not. If they’re so insecure that they can’t handle an intelligent conversation with a patient, they really shouldn’t be a physician in the first place. I’m paying them to assist me, and I am the one in charge of my health care. Period. Thank God my rheumatologist doesn’t act like that. I might have to enact the Lupus Serenity Prayer if they were ALL that way. If you haven’t seen it, it’s such a scream I just have to share it here:Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of all the doctors I shot when they said, “You’re perfectly healthy, it’s all in your head.” You must understand how common a thing it is for a Dr to suggest to a patient with autoimmune inflammatory symptoms that they should be sent to psychiatry. They slip it in there like it’s the only possibility and you should just accept that answer and go away. It’s getting worse too. No one wants to pay for anything, and the most offensive part of it is that I’m really sure after 5 years of premiums and co-payments, I’ve paid for any test I might need about 3 times over – especially considering my coverage has DOUBLED in that time (the cost, not the care). Being that I do not have a long history of invalid complaints, drug-seeking behavior, or nagging messages, you would think the fact that I’m now complaining about health issues regularly would make them pay attention. Instead I get, “I don’t know where to send you, except maybe psychiatry.” Between that, refusal to repeat necessary tests, and various dropped comments based on her personal religious beliefs, I’m about to blow a gasket.
Yesterday I accidentally crashed my electrolytes. Apparently the care with which I set up my necessary dietary regimen to reduce my discomfort put me on a delicate edge. Somehow I managed to forget that I hadn’t had a solid meal, what with running errands and working on my websites. By the time it got to around 9:00pm, I felt pretty ill. My heart was beating hard and irregular and my skin felt hot, but dry. I’ve experienced heart palpitations so many times in my life (hereditary) that I routinely will just go lie down until it eases. I did, and it didn’t. It finally took someone checking on me and determining that it was too warm for me in the house before anything made sense. After a discussion about temperature and how I was feeling, I managed to get my brain in gear enough to hunt down some Gatorade. After that I realized I needed food. Oops. I contend with my Drs regularly that removing salt from my diet is NOT a good plan, and they never understand why. I guess they assume that I eat like the average American junk food junkie, but I don’t. When I don’t salt my food, I crash. Since I didn’t eat food, I didn’t eat salt. You see where this is going. It was hot yesterday and I was out there. The problem with such a condition is that by the time you’re getting critical, your brain no longer functions well enough to tell you what you need. End of story was turning the A/C up, which I wouldn’t have chosen since my feet felt like ice, and getting a lot of fluids with citrus and a meal in my system… and I felt better. Better, not perfect. I’m still struggling today. The PROBLEM is that shouldn’t happen so easily. It’s not “normal”. I’ve had issues with this most of my life in fact. Yet… I can’t get a Dr to take a real look at the list of difficulties. Take this pill, go away.
I love the suggestions. One was for my complaint of memory problems. Her diagnosis was “stress”, and her plan was that I should read more books. That will improve your memory, she said. She then added in that irritating sing-song mommy tone, “and not TV…”, to which I replied with a sour look, “I DON’T HAVE TV.” I haven’t for the last 2 years. She had nothing to say to that. I think she has a hearing problem. Seriously. We went round and round about blood pressure for a while too. They would use that damnable automated vice (no, I didn‘t mean device), which causes me a great deal of pain, then wonder why my BP was high. I would tell them to check it manually and it would be normal. They would have already recorded that it was high from the nurse’s station reading however, so I would get a letter from the HMO telling me how bad it was and that I needed to make another appointment. I would throw the letter away. Finally I got sick of hearing her bitch and started eating ½ cup of dry roasted soybeans a day. It was genuinely a TOUCH high (not nearly so much as the anaconda machine generated), so that brought it down sufficiently. She checked it after I’d done that for 2 weeks, looked irritated and said, “No, you’re not hypertensive.” I looked bland and said, “I know.“ This was in the wake of about 4 prior conversations that went like this…
Dr: If your blood pressure stays high I’m going to put you on medication.
Me: No you’re not.
Dr: Well I will have to.
Me: You can write whatever you want but I’m not taking it.
What not a single one of them could pull their head out long enough to hear me saying was I’M IN PAIN OF COURSE MY BP IS HIGH. I came in there in distress and then they clamped my arm so yeah it was high. The next beautiful thing was me trying to make them understand that when I stand up it drops… a lot. The nurse perked up and said they were doing a study on that right now, so she checked it with me standing that time and indeed it did. Almost 30 points. It’s enough to make my head pound at times. You would think she would have noted that in the chart. Instead she used the lower number only. That’s peachy to shut the Dr up about “high blood pressure” but it doesn’t get me any help with the real problem. It’s a total circus.
Most people would just take the blood pressure medication, I suppose. I know from past experience a couple of pertinent facts that make it both unnecessary and dangerous. The first is that when I am not in pain and am able to go about my normal routine, my blood pressure is also quite normal. The second is that when they diagnosed me with PCOS in 2003, they prescribed the usual course of treatment initially, which is a blood pressure med called Spironolactone or Aldactone. It has the side effect of being diuretic which flushes excess hormones from your system. That’s why they use it. That would be wonderful if I weren’t deathly allergic to it. What I couldn’t tell at the time was that it drops my blood pressure SEVERELY, even in miniscule doses. I mean I chopped those pills into thirds and took the pieces with meals and it still happened. I felt a weight on my chest, I couldn’t walk 20 feet without my heart pounding and feeling like I wasn’t getting enough oxygen to stay on my feet, and I felt panicky. Along with feeling like I’d swallowed razor blades, it was overall unpleasant. I’ve listed myself as allergic ever since without exceptions. My current HMO has record of this. Would you believe that her response to me pointing this out was, “Well that’s why there are a lot of different medications”..? The thing I’ve learned over the years is, they may change the name a little, but if it’s a specific type of medication… there really is little to no difference in it’s mechanism. That means the side effects aren’t likely to change when they’re as severe as my reaction was. I also had an ER crash my BP critically with Dilaudid and Phenergan in 2006 so I think I know what I’m talking about by now. My body doesn’t like foreign chemicals. What’s the mystery here? Bad things happen.
She took offense one time when I said I didn’t want to be a guinea pig. She defended her stance and the change in medication the HMO was pushing (cost does that regularly), rather than understand that I’ve already been through enough discomfort to know what does and doesn’t work for me. It isn’t like I live in my body 24/7 after all. What do I know?
For some reason, in the midst of all of this when I had a sinus infection she decided that prescribing a sulfa antibiotic for me would be a good plan. I won’t go into the ugly side effects in detail, but suffice it to say I won’t get within 20 feet of a bottle of that stuff again as long as I live. The petechial rash and endless itching was just one of the joys I had to endure before finally telling them where they could stuff their Septra/Bactrim and requesting ordinary old Amoxicillin. Lo’ and behold I got better. No one finds it odd, of course, that I’m allergic to the one type of antibiotic known well to cause severe and even life-threatening reactions in Lupus patients. Never mind that Aldactone is also a sulfa drug. HMMM… gee.
And now for my other favorite, a relaxation technique when you’re having a bad day….Picture yourself near a stream. Birds are softly chirping in the cool mountain air. No one but you knows your secret place. You are in total seclusion from the hectic place called ‘the world.’ The soothing sound of a gentle waterfall fills the air with a cascade of serenity. The water is crystal clear. You can easily make out the face of the person you’re holding under water. Tala
By this time I’ve been on the Lupie-go-Round for about 6 months. For some that sounds like a short hop, considering it took them many years to get a diagnosis. To me right now it seems interminable because I’m going nowhere fast, and nobody in the HMO system (to remain nameless, even though I’d like to blast them to kingdom come right here) is listening to me. I’ve been advised to pay out of pocket for a non-HMO physician, as I’d have a better chance, but who’s going to pay for that for me? I can’t afford it. That would kind of be WHY I have insurance in the first place.
For the record, I’m also getting really tired of the question (from people outside the Lupus community I mean), “Do you have an official diagnosis yet?” The answer is no. That doesn’t make the symptoms go away, or the fact that I plainly had a positive ANA result that is slightly above a low positive… which means it’s not a low positive… it’s a positive. I won’t debate that fact with anyone. I know what I read. It also doesn’t change the documented fact that you don’t have to have precise labs to actually have Lupus. I don’t mind explaining that part to anyone that isn’t educated in the matter, but I do mind the disbelieving attitude I get from some people because I don’t line up with a textbook. If there’s one thing I’ve learned in my months of conversation with many SLE diagnosed individuals, it’s that there is no such thing as a perfect profile on anyone. We’re like a bunch of snowflakes and there’s no way around that fact.
This label of “Preclinical Disease” has been a source of entertainment for me since the rheumatologist handed it to me. While I appreciate his demeanor, professionalism, education, and the time he spent with me in our two appointments… it still isn’t right. I considered it the words of someone tied by the system who might otherwise say that yes, this looks like Lupus to me even though you’re not full-blown at this time. That, partly because he offered me Plaquenil if I wanted it. In looking up the definition of that diagnosis however, I am bothered by what I found. Here it is: Of or relating to the period of a disease before the appearance of symptoms. Now… what part of I have pain of all types, a malar rash, serious digestive distress, photosensitivity, drug & venom sensitivity, a sulfa drug allergy, blood pressure drops when I stand up, memory loss, hair loss, splinter hemorrhages under my nails, hyper and hypo pigmentation, anxiety, breathing difficulties, and a tendency to develop infections did he miss??? It isn’t like I have all those symptoms, in overwhelming capacity, at all times, every single day, but the major ones are ever-present enough to cause me concern and change the way I function daily. I struggle to maintain normalcy because I don’t want to be a burden or chore to anyone else. There are still many wonderful things I want to see and do in my life – and plan to. I do like being self-sufficient, more than anyone realizes I guess… but I digress. That definition bothers me. I have symptoms. How can I have a diagnostic label that states that I do not? So they didn’t find the precise lab result they were looking for. That’s not a symptom. It’s a technical analysis. Where are we trying to go with this? (Besides out the door so I’m not taking up their precious time.)
I know a woman who was told recently, as she was handed some prescriptions, that she didn’t have Lupus and NOT TO COME BACK. What??? I mean, my response to that is 1. Thanks anyway you self-righteous S.O.B., I won’t. and 2. I’ll be looking for a way to get you sanctioned for negligence in care and 3. Doesn’t anyone take the Hippocratic Oath and believe in it anymore? Maybe that SHOULD be required by law for a physician. Military requires an oath… Police service requires an oath… Why not the person that is supposedly there to make sure you stay healthy and don’t die before your time unnecessarily? Where are the Drs that actually care how you feel? I need one.
Call it what you want, something isn’t right. It isn’t like waiting will make it any better, and in the mean time one of the important tests that could show a variance in disease activity was NOT repeated at the time I actually had pain, even though I requested it. The explanation I was given was that the ANA is a “nonspecific test”. Well if it’s so unimportant, why did my positive result prompt you to run more tests back in February in the first place? Not only that, why is it that every Lupie I know has the ANA repeated when there seems to be a change in their well-being? If it’s an indicator of disease activity, CHECK IT! But no. She refused. After five long years of payments into the insurance plan, I’m relatively certain I’ve paid for the tests several times over. I would reassign myself simply because I’m sick of looking at her smug face, but I know that the system will provide me with someone under the same limitations. It’s become a what-does-it-matter situation. I also might have to drive 17 miles (further than now) to find someone I can tolerate. While it might lower my blood pressure a bit to have someone new, I don’t know if I want to add that kind of driving distance to my problems.
In conclusion, I can only surmise that the good Dr. Rheumy decided that he had to come up with some sort of diagnosis for me so I would stop worrying. It doesn’t make me not worry. It makes me angry.