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
I just wanted to say thank you to the friends that nominated me, and those that endorsed me as well. I appreciate the seal of approval and confidence. ;-) You’re the reason I work so hard to maintain the pages, the blogs, the groups. I could do any amount of study and research for myself alone, but it wouldn’t be as meaningful. I like to see the successes of others as well.
This is long, but worth it. What a day in my life is like…. Followed by how I choose to view the experience. I don’t talk often about the details of my health challenges in-depth, because it usually serves no purpose. I want to take the time to be clear that even my good days are not easy, and I am no different than anyone else in that regard. It is how I decided I am going to manage these things that makes a difference. Anyone can make that choice, and do it every single day. It is a daily decision.
When I wake up, my mouth often feels very dry – about as dry as my eyes felt when I went to bed the night before. I can feel stiffness in my connective tissues, from my neck to my feet. I never know which joints or muscles are going to be sore, but it’s always something. My body usually feels like lead, and I have to stretch and turn over a time or two before I feel the energy to roll up to a sitting position (the way I was taught to in physical therapy to protect my lower back). I have to wait a few seconds to adjust to being upright, and then again use what I was taught in PT to safely stand without straining my low back and my knees. Then I have to wait a few more seconds to adjust to being on my feet before taking a step. The first few steps are done carefully, so as not to strain anything in my feet, ankles, and back that has tightened up in my sleep. How many “spoons” have I used at this point? Unknown. (Look up “The Spoon Theory”, if you have not yet read it.) I make sure to drink some water first thing when I’m up as well. Low blood volume doesn’t go well with left ventricular hypertrophy (my heart condition).
At this point I am assessing how my bronchial area feels today. Does it hurt to take a breath? Am I wheezy? Congested? Too dry? I am also finding out how cooperative my nerves and muscles are as I walk down the hall to the bathroom and splash cool water on my face to ease any puffiness around my eyes. How bad does the 2nd metatarsal in my left foot hurt today (it always hurts, just how much varies)? How bad is my right ankle cracking? Which one of my knees feels unstable today? How bad is the “tennis elbow” (both sides), and do I have to be careful with gripping and lifting things today because of it? Do I need to use either of my inhalers? Which one? Is there irritation/inflammation, or is my airway feeling constricted? I never know when I wake up if it will be a bad allergy day with uncontrollable sneezing, wheezing, coughing, or not. I have steroidal nose spray, a steroidal inhaler, and my albuterol. Mix and match.
Everything to this point is also affected by the season. If it is Winter, the process is slower because the cold weather not only puts more strain on my joints and any arthritic areas, but also takes a toll on the vascular system in my extremities – I have Raynaud’s Syndrome. If it’s Summer, I may be dehydrated from the day prior (and I do drink a lot of water, believe me), or simply overtaxed by the heat. I have a few conditions that make me hypersensitive to extreme temperatures and temperature swings, as well as barometric pressure changes. I have Fibromyalgia and Dysautonomia, as well as Systemic Lupus and Raynaud’s. I am photosensitive, so I have to very strictly protect myself from UV exposure when I am out on sunny days. Sometimes those measures fail to be sufficient, and I am paying the price for it by the next day. That reaction could last days, or possibly weeks. I haven’t even made it to the kitchen for breakfast yet…. I’m still in the bathroom putting aloe gel on my forearms because they are tender, dry, and warm from inflammation of the skin. That’s any time of the year.
I have to brush my hair too, by the way. That often involves retrieving my brush from the floor a couple of times because my nerves misfire and I drop it. It might be a morning when I am just too stiff and sore to function without a hot shower before I even eat breakfast, so I may have to step over the edge of the tub to get in and out as well. That’s a normal action for a healthy person, but for me it is a place of caution. I have a sliding glass shower door, so thankfully I have a sturdy frame to hold over my head to prevent falls.. but if I don’t watch that foot lift, clipping the edge of that frame with my toes is an agony I can’t even begin to describe. I’ve done it enough times to move pretty slow these days. When you’re tired…. sometimes you just miss. Or maybe don’t miss would be more accurate. Ouch. Presumably that shower loosened up my muscles enough to make it easier to dress for the day. This is on a day that I am NOT flaring, to be clear. There are days that my only goal is to make meals, check messages, and take it easy. I just try to prevent very many of those from stacking up.
Breakfast these days is usually a fresh fruit and vegetable smoothie. I made that change one year ago, and haven’t regretted it for one second. Occasionally I will make something more “traditional” like eggs, cheese, bacon (in moderation), sometimes with corn tortillas, sourdough toast, or a gluten-free bagel. Once in a while I will have potatoes with that. Sometimes I just have a Larabar or BelVita wafers and some almond milk. What I eat, and how much I eat, varies depending on my energy needs for that hour of the day and whether or not I feel nauseated that morning – a common problem with autoimmune disease, for no definable reason. I also continue to drink more water at this point and through the rest of the day. I drink a lot of water. I have to. I have to take my heart and BP meds. I have to take my Plaquenil along the way – the antimalarial med that tones down the over reactive receptors in my body and keep my immune system in check. I also have a bunch of vitamin supplements to remember. One-a-day chewable (thank you Trader Joe’s), D3, Chromium picolinate, krill oil, bromelain (for the same reason I eat fresh pineapple almost every day – anti-inflammatory), primrose oil, ALA, carnitine, biotin (to manage my hair and nail problems)…. I’ll stop there. In that smoothie, by the way, there are chia seeds, hemp seed nuts, turmeric, ginger, and cinnamon (all 3 anti inflammatory), and cacao nibs consistently. Those are part of my necessary supplementation. So are the avocados that I eat every day. I avoid as many processed foods and preservatives as I can. I don’t eat candy bars. I don’t eat ice cream. I don’t drink commercial sodas (the rarely occasional crafted type with sugar, not HFCS). I don’t get fast food burgers and fries. I don’t go out for pizza – haven’t in many years. Does this sound dreary to anyone? I figured I would ask at this point. Think it over, and you can even post your reaction to the idea in a comment if you feel like it. I’ve posted a blog entry before of what I do and don’t eat, if you’re curious for a detailed rundown before commenting.
Does that make you interested, or repelled? I’ve seen all manner of reactions to it. One person said one time that they felt “overwhelmed”. Let me state plainly here that I made these changes over a matter of YEARS, and the most drastic changes were one year ago. No one can switch everything out overnight unless they are independently wealthy and have the intestinal fortitude of Hercules. Seriously. Finding proper resolve takes work. I’m not perfect either, but I don’t dwell on my shortcomings. There is no point in doing that. Somewhere you have to pick a spot and start there. That’s all anyone can do.
To shorthand meals, I eat every 2 to 3 hours in the day to keep my blood sugar stable. I make meals from scratch and create systems that make that easy to manage. I keep it simple. I put away leftovers after serving myself a reasonable portion. I am not compelled to eat what I do not need to eat – food is a utility for fueling my body, not an emotional event.
To shorthand the rest of my day… everything continues a lot like the morning that I described. I have to decide what clothing is comfortable to wear, depending on my Fibromyalgia symptoms and whether my autonomic system is dysregulating and making me uncomfortable. That could be temperature, or how sensitive my skin is, or whether my stomach is touchy. I have to evaluate my anxiety level as well – am I okay to deal with a lot of people and noise in a store, or will going there put me on the edge of a panic attack? I have to consider the weather before I decide to leave the house – too cold/too hot? Moment by moment autoimmune patients have to make decisions based on how their body has decided to respond to each little event in the day, and we have to adapt and make changes to our plans based on how the day progresses without any way to predict it. Based on prior experience, we can guess at a framework, but it often changes anyway. This unpredictable nature of the diseases we face is part of the reason that winning a disability claim can be really difficult. One day I may seem perfectly fine (and yes, I typically look fine most days like most lupies), and the next I am down for the count and it could last days, weeks, even months. It could be from too much sun, or too much unregulated activity, or a cold virus, or an allergy. It could be anything.. and sometimes nothing that we can see. I have not held a job since 2003 as a result. I cannot commit to an employer. They aren’t very understanding when you call up one morning and say you won’t be in, and it might be a couple days… or maybe a couple weeks… or a couple months, you’re not really SURE right now. Each day is new. Boy, that is the TRUTH! I never know what it will bring.
Shopping is a changing adventure. I might “need” to go to 4 or 5 stores and services. I might set out to do it, and some days accomplish that… but others, I might have to cut it short and go home after 1 or 2 stops. I may get home and head straight for a nap because my stomach is upset, or I’m just too tired to continue, or everything hurts too much. Thankfully with the changes I have made, that does not happen as often as it used to. That doesn’t mean it never happens. It is a part of life with autoimmune disease that you have to expect unexpected changes in your day. The key is not to get mad about it. It happens.
This is where I am addressing how I choose to view the events of my day. The reason my Facebook timeline and pages, and my blogs, are not full of complaints about every little ache and disaster is because I consider it the hand I have been dealt in life. I am not angry about it. If you read my posting, you know that I have said that I have had Fibromyalgia since very young. Pain is not new for me, and I don’t have a challenge-free life to look back on wistfully. That may give me a different perspective than some people have. I am still not angry about it. Why be jealous of someone else’s life? Sure, I would love to drop these issues and know what it’s like to not feel weighed down physically, but it’s not going to magically happen. So why stew about it? It makes no more sense than it does for people that jealously rage about others that achieve control, inactive phases of their disease, remission, etc., or criticize others that have a milder case than theirs. The truth is that often the ones we see as a “milder case” are not spilling all the details of their personal rough patches. They may not be as “mild” a case as you think they are. I may be that example. I’m not hiding anything. I just don’t feel the need to dwell mentally in horrors. They exist. They happen. We keep on. I can take a minute to rant about it when I feel the need, but then what? I prefer finding solutions over wallowing there. It’s how I manage to thrive, rather than simply survive. Surviving is only a starting point.
This is how I do NOT see my day: I woke up in so much pain. Just getting up is going to be difficult. I don’t feel like eating, but I have to eat. Nothing is appealing, and what I ate upset my stomach. I have to go to the store and I feel exhausted. I just want to go back to bed. I don’t want to deal with people today, and the thought of it makes me feel like crying and crawling in a corner. I went to the store, but I felt like punching people by the time I was done.. and now I have to carry everything in from the car and I’m too tired. I need to eat lunch, but I don’t feel up to making a meal now. I haven’t worked out today and I know that I need to, but everything hurts too much. The noise in the store (and someone’s perfume) was so overwhelming that now I have a migraine starting. The bills need to be paid, and I’m so stressed thinking about it that I don’t know where to start. The laundry needs done, but I just don’t have the energy to pick anything up. I need a nap. I took a nap, and now I’ve lost a couple of hours of my day and nothing else is getting done… and I’m hungry, but I don’t feel like cooking. My back hurts. My feet hurt. I have to take my evening meds.. can’t forget those. Have to feed the cat. Have to feed the fish. The lawn… the garden… they need water, and I so do not feel like it. There must be a storm rolling in because now I have stabbing nerve pains and I just want it to STOP. Cooking dinner means washing dishes.. and I don’t feel up to either one. I’m tired, but I can’t sleep. I keep waking up… why am I awake again…?
How do I choose view my day? I woke up. I am breathing, and I can move. I may be nauseated, but I have choices in my kitchen and I’m sure I can find something. Rolling out of bed was hard, but I am thankful for the PT that taught me how to do it correctly and not make my back worse. I may be too tired to feel like going to the store, but I have enough in the bank to get what I need the most and if I don’t make it to all of my errands, they can wait until tomorrow. I will do the best that I am able today, and do that again the next. I didn’t like dealing with crowded stores, and I feel very wound up, but I’m proud of myself for getting through it and looking like a sane person in the process. Yay me! I hate carrying bags in from the car, but I got my shoulders repaired 2 yrs ago and I can do it without help now! I may not feel like working out today but I will try to do a little. If I REALLY can’t do it today, tomorrow is another chance and that’s okay too. The store was full of screaming children that hurt my ears and left my hands shaky, but now I am home and it’s quiet here. I can relax again. I can be grateful for that – and grateful for having an effective migraine medication if I need it. I can also deal with the bills one at a time and choose to breathe slowly and control my anxiety about it – what a great skill I’ve learned. I FEEL scrambled, but I can choose to take my time and sort it out. My feet hurt so I’ll take my shoes off and put them up for a few minutes. I have also learned that short breaks are one way to take care of me. Needing a nap is not a crime. I let myself do it when I need to. It’s a healthy choice. The cat, the fish, and the lawn didn’t die in those 2 hours. Nerve pains are anything from annoying to awful at times, but I can walk – maybe slower than I wish to, but I can. There was a time when I could not. Dinner can be something really simple, as long as I make healthy choices. That too is okay. I can’t sleep, or stay asleep sometimes.. but not all the time. (And you know what? When I make the choice to see my day on the level of the successes, I rest a lot better.)
I really just touched the surface of my physical issues and discomforts, even in this writing. Someone once told me when I described how sick I had been as a child, and how often, that they would not want to live that way. I didn’t want to live that way either, but they really meant they would rather die than have the life I had. That to me is not only shocking, but rude. It is as if to say that nothing I endured justified the value of my overall life, or what I may bring to others. This is also a pointless statement to make to a sick person. You do not know what you would be able to endure, or how you would face challenges, or how you would feel about it until it is YOU. My life is hard, but it is still a good life.
Are you building yourself a good foundation, or self-sabotaging? The power for that is in your hands alone. We autoimmune patients are not the only challenged people in the history of the planet, and we do not have a corner on the market in suffering. We have the exact same opportunities to strive for a better quality of life in the midst of adversity as everyone else has always had. When you hit a rough patch, scream if you need to and get it out of your system. Cry if you feel like it, and cleanse yourself. Rant about it to your closest friends that you can share with mutually, and confront the feelings. When you are done, be done. Wash your face, take some deep breaths, shake off the anger, and embrace your blessings. It’s then time to move forward again, at whatever pace you are able.
I go through time frames where I am able to do more. I take full advantage of them when they come, and it’s not because it is easy for me. It is because I choose to do it in spite of the effort it requires of me. You should see how I am when I wake up in my sleeping bag in a campsite after a cold night in the woods. I don’t move any faster there than I do at home, and in fact it takes me longer. For these things “can’t” is simply no longer in my vocabulary, and it did once occupy a space. Doing things differently and more slowly – adapting – is how I managed to accomplish this. I can accept changes without accepting defeat.
Over and over I have said that what I am doing is not easy. It is the hardest path I have chosen in my life, and every day is tremendous work, start to finish. Some days my impression is that very few people understand what that means . Hard paths are the best and most rewarding ones in life.
From childhood I have been an individual of deep thought and emotion. There are things with which I connect in ways that I cannot put into adequate words. Most of these are found in nature, whether it is adventure or beauty, and if the two are combined then all the better. It has never been in my nature to just disconnect from emotions, however I did determine a long time ago that if I do not do the work necessary to manage it, then it will be my undoing. There are times when that does not set well with others, and they do not understand why I am not being soft and sympathetic. They may think I am being cold when in reality I could be raging inside, usually because I want to scream for them to do something proactive to rescue themselves. Do you really not think I have been in your shoes? My case of Lupus might look mild to anyone just meeting me today (or anyone not paying attention). My true friends that have been there from day one, and made themselves trustworthy for my confidences, can tell you otherwise. I can accurately say that NONE of you were there when I couldn’t even stand up off the floor for months on end. That was before the support groups entirely. I went through that alone. It is part of what has made me the individual that I am today. Where do you think I built my foundation? At rock bottom, baby.
That ugly place I left behind.. the one full of agony, Vicodin, muscle relaxers, and despair… it’s been behind me since 2007. It was not however until two years ago that I really shook free of it and started to climb the rest of the way out. I know people that have never hit their rock bottom (though they may believe they have), and I know people that hit it and set up camp, and I even know a few that like me they stopped halfway up the ladder to enjoy the moderate reprieve. It’s still dark in there, and you don’t have to stick around. I am speaking metaphorically and I do that a lot. If it doesn’t apply to you, skip it. If your world is really dark.. then it probably applies.
Pain is inevitable. Sooner or later it touches all of us. Suffering is optional. I am going to keep repeating it until someone else gets it – and then some more until someone else does. If there are no military or good Veterans in your life, maybe you need to make friends with some. You can learn a lot from them, and I guarantee they will loyally be there to help you through the lessons. They’ve taken on the responsibility at it’s grittiest level to let themselves be torn down, rebuilt, molded, and perfected into beautiful strengths that only the most disciplined training can bring out of a human person. Professional athletes have to call on the same internal fire, and chose to drive themselves to new achievement for the intangible rewards it brings. We all have that choice, no matter what our level of capability is. We just have to choose to tap into it.
I grew up hearing the irritating words “the truth hurts” far too often. The philosophy was (I believe) abused. The truth is that the truth HEALS. It’s just that not everyone appreciates the mending process, and some are unwilling to accept that parts of it can be unpleasant, uncomfortable, distasteful, and even painful at times. Look at surgery as an example. Damage has to be inflicted in order to correct and repair, but it is sometimes necessary and when it is necessary then it is the right choice. Maybe something needs to be surgically removed from your inner workings, metaphorically speaking. When you hear a “cutting” truth, you react to it, and many chose to react negatively rather than to consider what is being presented. I’m sorry but I don’t have any anesthetic to present people when I am sharing concepts, and while I can mince words by choice, I tend to believe that for some people it dulls the message too much. Even in medical procedures, sometimes it just can’t be done that way. If you’re asleep when this message hits you, you’re not going to hear it. This is a wake-up call.
There is not a morning that I wake up and automatically want to get my shoes on and go for a jog. I have to stretch and move slow, and consider the messages my body is sending me. I have to converse with myself about what I want to do, what I am up to doing, what I need to push through, and what benefits and risks there are. This is after four years of treatment, the latter two including a fitness routine, two major surgeries in the midst, and a complete dietary overhaul for the last year. I will ALWAYS have to be circumspect with every move I make, every activity that I undertake, and every morsel that I consume. I committed to it because I decided that my life and living it was important to me – that I did not want to spend it miserable. This starts on the inside, dear ones. It is a decision. You cannot manifest a reality without first imagining it. There are days when I want to roll over and cry and go back to sleep. If I want the things that I desire to manifest, I do not have that luxury. This is MY choice about my own life.
Where there seems to be a problem is the reaction others have to cutting truths. If it’s not for you, then it’s not for you, but you don’t have to get upset about it in that case. Something unimportant in your world is a thing that you can walk by without a thought. If you reacted to it, maybe that’s what you need to be examining instead of getting upset at me or anyone else. When I share what I am doing, it is because I love other people enough to not want them to unnecessarily suffer. At no point have I presented anything as a cure-all for disease, but I do guarantee that you will see changes if you do the work. If you’re not willing to do that, then just admit it and drive on brothers and sisters. The hard fact is this… until you actually do what I have done, and make the sacrifices, the hard choices, discipline yourself, say no to “wants”, and stay consistent with it at length, then you cannot rightfully criticize those of us that are living proof of what can be done. You can’t have it both ways. Either admit you don’t want to do it, and accept where you are at, or make every effort that you can drag from the depths of your soul and give yourself a righteous voice with which to speak. If there were no successes, I would not share suggestions. I would not share the words of others that I admire, if I saw them to be hollow and unfounded. It is a basic truth that we are all individuals, and a disease like Lupus affects us all differently, but it does not discount the basic truths of how the human body functions. I promise you that 100% of the time how you treat your body will affect your outcome. You may not think it is enough, or significant, but it is still the truth. You are the one that decides whether it is worth the effort or not. It’s up to you.
There are people that I find quite inspiring to watch. Some of them are like me, and they have catastrophic illness to manage. Others are disabled physically in an obvious way, either missing limbs or unable to use them. Others still are amazingly fit and blessed, but they have been through horrific injuries that would make an ordinary person want to give up. Virtually all have been told NOT to do things, or that they would not be able to anymore, and they chose not to accept that prognosis. In the end, each of them has made the same choices that I did… that I continue to make. Life. Motion. Desire. Joy. Passion. Fire. Get some. Or don’t. Just don’t get mad at those of us that do. In embracing that you will be free.
It may be time soon for me to make a new video – one of me just talking to you about where I am at. Sometimes that reaches people better than plain text. You have not yet seen the changes that have taken place. I am living proof of what can be done. I am also completely sincere about wanting to help others. Truth.
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.
It’s been a while since I’ve written. It’s a new year now, and so it seems like a good time to get up and move again (proverbially) in spite of the present challenges. I’m going to make an effort to keep the blog more active again.
Right now I just want to say that last year is not an experience I would care to repeat. I commented on my Facebook page that I’m not sure whether to threaeten to grab 2013 by trhe throat and drag it down a better road, or talk nice to it and pat it on the head. One way or another however, I expect more positive changes this year – and I will to find ways to make that happen for me. Somewhere in between the days that require medication to get out of bed and function, there are the days that can be seized and relished. I was doing that some before I went down the path of two major surgeries, loss of household income, loss of health insurance, and various other blows. It’s taken me some time to recover balance, but I’m getting there. I lost my remission. I hate to say that anywhere, but I did. I flared. Oh well. I’ll get it back.
I have to say something encouraging though. I have the perfect news to share in the light of that intent. If you’ve followed the saga of my freakish discovery of an idiopathic (means “We have no idea why you have this”) heart condition, then you know just how challenged I have been over the last year. I scrambled to get in my annual cardiac stress test before the insurance coverage ended, and it was a blessing. I already knew the left ventricular hypertrophy was stable (it had to be for the shoulder surgeries to happen), but I was not given much hope for improvement any time soon, if ever. There was a small chance of it over time. With an ejection fraction of 45% (which is 10% below normal), I needed two medications to lower my blood pressure and regulate my heart rate. It needed to be slower and better controlled because of palpitations. As of my recent test, my EF is back to 55% – NORMAL – and goes up to 65% during exercise as it should. The Dr indicated that day that he believed it might be, but I wanted to wait until the follow-up visit for verification before blurting about it. I am stuck with medications for maintenance. I think however I can live with that. The alternatives are not appealing.
Unfortunately it also seems that I have autonomic dysfunction. Some type of neurocardiogenic issue, possibly POTS, possibly something else related. Let’s call it orthostatic intolerance to be totally accurate, and I’ll add that I only have “pre-syncope”. What all that means is when I stand up my autonomic system doesn’t regulate like it should and my blood pressure drops instead of compensating for the change in position. My brain isn’t getting enough oxygen and I get lightheaded. Some people pass out (syncope) but mine isn’t that severe. I’ll be grateful for that and hope it stays that way. It is apparently responsible for some of my fatigue and other symptoms like electrolyte crashes and sudden cold sweats. I mention all of this for the same reason I share any of my health concerns. Someone else out there reading may say HEY… that sounds like me! Women’s heart disease is a serious matter and I am all about education on the subject. I wish I had known what I know now MUCH sooner! So I have to be diligent about staying hydrated, and it turns out I have been right all these years when I told Drs that I cannot reduce my salt intake without getting sick. They always insisted I should because of the hypertension. The problem with that theory is that 1. Not everyone’s hypertension is affected by salt, and 2. I have distinct and oppositional conditions that make that a bad proposition. They also assume that all of their patients eat the same. I am not consuming a typical American diet of prepackaged, prepared, processed meals. That means the only salt I get is what naturally occurs in the fresh food as it grows or what I shake on it myself. If I take that away I feel like death warmed over. I was right. I’m gonna say it. I TOLD THEM SO.
I will also say right here that I have the best cardiologist in the world. I love him to pieces and I hope he doesn’t retire until I don’t need him anymore, or maybe he has some fabulous protégé’ to replace himself with. I wouldn’t trade him for gold. He’s conservative, invested in his patients, highly intelligent, and absolutely sensitive to our well-being and how every decision affects our lives. He didn’t want to change my medications other than to try reducing one of them because I’m doing so well – with caution. Basically he said I’ve lived with this other thing a long time and adding a medication would fight with the present treatment. He said I know how to manage it and there’s almost no chance of it worsening. I’m good with that.
This sums up 2012’s events in a nutshell: Cardiomyopathy diagnosis, two major surgeries, SLE remission, lost my insurance, lost my remission, got great news about my heart, and ended the year not sure where to go from here because of all my Drs that will work with me on cost, I can‘t afford to see my rheumatologist until I get insurance again. That should make you laugh, and I hope it does. I’m smirking right now because what else can you do? I often ponder the irony that I constantly live one of my favorite literary lines… “It was the best of times, it was the worst of times”, and I have been doing so for a very large portion of my 45 years. I believe I am in the throes of an extreme example at present.
Now you know the meaning of the ancient curse, “May you live in interesting times.” (That’s not supposed to be a good thing.) Would I however wish for boredom? Never. In the midst of conquering my fear over what this diagnosis meant for me, I created new avenues to bring awareness to other women about heart health. Life is work, even when you don’t work. Purpose is what makes us real humans. If you don’t have one, find one.. great or small. You never know what some small thing may mean to others.
Just a short note today to say that Losartan seems to be doing right by me. I’m glad I did my research and stood up to the Dr about what I wanted treatment-wise. My pressure is down, no weird side effects, and I feel better.
For anyone considering a BP med, do your reading on the various ones and inform yourself. The Dr won’t necessarily do that for you, and you have to be educated for your own safety. I’ll be seeing a cardiologist in a couple of months (darn wait for specialists is ridiculous at times), but in the mean time it’s managed.
Lisonopril apparently has a fairly common habit of giving people a dry, hacking cough – seen it happen. If you’re struggling with that, ask your pharmacist about it and they may tell you skip a pill to see if it improves. They might just tell you go to your Dr and get it switched right away. Don’t tolerate feeling like you’re swallowing broken glass unnecessarily. Side effects really shouldn’t be ignored, even if it’s just to reevaluate. There are MANY blood pressure meds of different types on the market and you have choices. Get the right one for you.
I do of course, as always, advocate that you make whatever lifestyle changes you may need to make. I had this moment of realization after starting this med… the reason some people don’t do better with their diet, activity, and habits is because there are pills to fix everything these days. If one doesn’t work, take another. If one doesn’t work by itself, take two. If those two cause a problem, take a third… and so on. It’s a disaster in some cases that could be prevented by just taking care of yourself in the first place. Whatever you do, don’t let a pill do all the work for you. If you smoke, stop. If you drink to excess, get help and cut down. If you’re sitting on the couch when you could be walking around the block, get off your ass! I’m not speaking to people that are physically unable, but let’s remember the lessons from many yrs of Richard Simmons in the spotlight and do what you’re able to do from wherever you have to start. If you can only raise your arms, do that. Don’t just give up on everything because it’s hard.
A couple of pieces of information that I wish I’d had earlier on. The first is that high BP can damage your heart. That may sound obvious to some people, but it was never explained to me in detail. Of all the many things I studied, the cardiovascular system is one I hadn’t gotten to until my recent Medical Terminology class. The second is that BP that is up, then down, then up again, then down again… is more damaging than a consistently high reading. [Source of info, Dr. Mirkin] Mine was vascilating like that for a long time. The normal readings were enough to prompt a Dr to say I was okay. I was not okay. I wish my Dr at the time had been better informed. Now my readers are better informed. I can at least try to help someone else avoid the damage I now have.
I don’t yet know what the significance of it may be, but I was also experiencing orthostatic (aka postural) hypotension. It was documented in the Dr’s office that this happened when I would stand up – a good 30 point drop in my systolic pressure. They never did anything about it. I’m being told now to stay well hydrated, but I believe there is more involved than that. I’m better hydrated than most people. If I drank more water I’d be running to the little girls room about every 10 minutes! When you stand up, if you (consistently/often) get lightheaded, dizzy, or can feel/hear your heart pumping in your head like it’s working hard to get the blood up there, or worse you pass out, get in your Dr’s face till you get answers. It shouldn’t be ignored.
If you feel a weight on your chest as if you’re short on oxygen, even if it seems respiratory, get it checked by someone bright enough to consider a cardiac problem.
I started out with what is termed “white coat hypertension”. That can later turn into primary hypertension that no longer drops when you leave the stress of the Dr’s office. If you’re prone to these swings, get informed and do something about it.
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.