May is Lupus Awareness Month, so here we go again. It’s time for those of us with a voice to take the time to communicate a little more with others, and help educate our friends, family, and acquaintances about this disease. Help out, whether you have Lupus or just know someone that does, and encourage more research both private and professional. There is a lot to learn.
So on that note… my dear friends, and Lupies at large… Do us all a tremendous favor and do NOT start posting memes and comments to others that they should “Google it!” I’ve seen a couple of those going around, and I find them extremely offensive. I’m not even the person they are directed at, and I find them offensive. How do you think the people that we are trying so hard to reach are made to feel when they see that? It’s dismissive, insulting, and irresponsible. I’m saying it now before I start seeing those posts left and right again, and I get really mad at someone. I’m saying it because it’s unnecessary, and it’s not what we’re about this month – or any other. This is our time to shine, ladies and gentlemen, so do it well. You have the whole world at your fingertips, and you are the ones living with this disease. It may be a good time to educate YOURSELF more about your own illness, if you aren’t able to come up with important facts to share directly with your friends. You might be the one that needs to “Google it”, huh? So.. if you don’t know what to post, fire up your search engine and look up the things that you know you want others to understand and look for ideas. Even if you just take a second to copy and paste a URL to a good article, that is a worthwhile effort. You don’t have to post 20 things a day. One a day, or every other day is fantastic. You’re already online. I see you. You’re on Facebook. You have the time. Do it.
Our responsibility is to not come off like an angry jerk. If you want people to be interested in what you live with, then be inviting and desirable to talk to. Offer to answer questions once in a while. Give people something specific to think about. Make an effort as well not to be the figurehead of doom and gloom while you’re at it. We want people to know that it can be a devastating disease, but we’re also not supposed to be in the business of scaring the crap out of the newly diagnosed and their families. The FACT is that there are ways to manage this disease – I know because I’m doing it. The REALITY is that we do not have an expiration date. Lupus is not a “terminal” disease, so stop acting like it is. Yes, people die from the complications sometimes, but nobody stamped you with a 5 or 10 year life limit like the ignorant medical ideals in ages past. At the same time we are educating those without Lupus, give those with it reasons for a hopeful life. All of this is important! Get to work!
Some thoughts today on physicians. In being around a lot of other chronically ill people, I see some common issues taking place, and they are things that will cause you more grief than necessary. While we know it is true that there are “bad Drs”, and sometimes Drs that just have antiquated ideas – unable to move forward and update – and there are also some that are just bullheaded about their beliefs, they are not all worthless. Creator appointed people in this life to certain callings, and being a physician is one of them. We can’t discount everyone, based on the experiences we have had with a few. I don’t care if you’ve seen 15 different Drs, it is still “a few”. There are thousands out there.
It is easy when you are ill, and especially in pain, to become defensive. Negative experiences serve to bolster that feeling of defense, and it can even become an offensive stance over time. If you go into a Dr’s office with the attitude that you’re in for a fight, you will probably get one. When you are meeting one for the first time (or even the first few times), that is not a good time to put your dukes up. I’m not talking about cases of obvious abuse, as that does occur. I’m talking about you don’t know each other, and it is an introduction, an interview, and a time to get to know each other – it goes both ways. Don’t present yourself as angry and defensive from the second they walk in to talk to you. Be aware of your body language, as well as your tone of voice and how you say things. When someone speaks unkindly to you, you react to it. So will they. A new Dr is not one bit responsible for the last one you dealt with, and they should not have to pay the price for whatever happened before they met you. Exercise the same kindness and social graces that you would offer to a new friend, because they are being offered the job of helping you care for your physical (and sometimes mental) health now. I will often tell people this is someone you are paying for a service. That’s true. You cannot however develop a good working relationship with someone that you pissed off in your first encounter. At the very least, it will take time to undo the damage done. None of us have time for that.
The Dr I have now, we get along okay. That was not the case early on. Initially he seemed okay, but we hit some rough patches and disagreements. Instead of bolting to someone else though, I stuck it out and fought to develop an understanding between us. We still do not see eye-to-eye on every detail, but he has come to respect my views and needs. That would not happen if I had gone in there and told him off, or wasted time in a heated argument about things, and certainly not if I had run to someone else without any effort on my own part. What I have learned to do is walk away from an appointment that seems at an impasse. I take time to do my own research on an issue, make sure that *I* am educated on a health condition and any relevant medications/treatments, and my options. Then I go back and discuss what I have learned and do it in a rational manner – and you have to be open to ask the Dr questions about their views, and let them explain to you WHY. You will find that the more you are willing to listen to the average physician, the more they are willing to listen to you. In most cases, they need to have their say first. The reason for this is their schedule, the pressures, and the many things filling their head about all their patients for that day. Make notes so you don’t forget what you want to say, even during an appointment, but honestly let them speak first. When they are done, then you aren’t fighting their mental processes so much. Both my Dr and I were defensive in the beginning. We BOTH had to stop doing that to get anywhere. We both did.
Save your fight for your daily challenges. Save your fight for moments when it really is necessary to get what you need in the medical setting. Don’t fight every time you walk through their door. They will grow to hate seeing you. That is unproductive and pointless. Be as gracious as you want them to be toward you. If they prove to be incapable, THEN move on to someone else. Be someone that you would want to spend time around.
Since some of the posts on the new blog relate to Lupus directly, I’m going to paste the link to the one from today here. I don’t know how many readers have migrated there. If it could be missed, well… here it is. :-)
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.
I remember these tests I used to take when I was in counseling… temperament sorters. One of the questions asked in the “which is more important” list is honesty or kindness. I can never answer that in good conscience, because I simply do not believe that one can exist and function as a normal, healthy, adult in society without exercising both.
Anyone that knows me well knows that I value honesty above all else. That does not however excuse anyone’s need to blurt whatever they are thinking. Sensitivity to others is just as important, and you don’t always need to say what is on your mind. I believe the applicable saying here is that discretion is the better part of valor. If you want to go with childhood rhetoric, then “If you don’t have anything to nice to say, don’t say anything at all” works. I don’t believe in keeping everything bottled up, don’t get me wrong. I just see a trend lately where people feel justified in regurgitating their bitterness and distress all over the internet. Then they sit back and say, “What? I’m allowed to have an opinion.” You are. You are also expected to have a conscience about how your actions affect others. If it’s of no concern to you that words can cause hurt, and you don’t care about fellow humans, then by all means blurt away. In the mean time, I will be spending time with my friends that understand compassion and accommodation for the feelings of others.
There is more than enough hatred to go around. We don’t need to add to the pool, so learn to temper yourself a little. Be a REAL warrior. Warriors are not about attacking everything in their path. They are disciplined and introspective creatures that take steps sincerely and know when to stop and observe in silence. That is an honorable path to walk.
We all know the expression, “I wouldn’t wish this on my worst enemy.” For anyone with any level of decency about them, that is a genuine principle to uphold, and as an abuse survivor I think I am qualified to say that I have known individuals that could be wished harm. I don’t. What purpose does that serve? Is my own harm going to suddenly vanish because someone else paid some nebulous “price” that we can’t even legitimately tie in to retribution? Is it really acceptable to relish suffering, just because you don’t like something about someone?
I’m not just talking about evil people here. I don’t feel qualified to define between individuals and their level of deserving ill befallen. I could sidetrack to the legal system here and crime, but that isn’t where I’m headed.. so NO. There are two things bothering me, and neither of them have anything to do with criminal behavior. When I log in to Facebook lately, there are days that I just want to cringe. It’s not just there, mind you. Anywhere I go to read public input in posts has the potential for being an unpleasant enlightenment to what is inside the ugly minds of far too many. How did we end up here?
Topic 1 is about the Lupus community. We are supposed to be a support network for one another. We are the only ones that truly understand what we all go through living with this disease. I have talked before about it not being a competition – who is the sickest and most deserving of sympathy – but it goes beyond that. I am seeing a trend that is disturbing, and it is one where a sicker patient actually wishes harm on others so that they can better “understand” their plight. It’s bad enough when someone wishes that a healthy person could be sick, but to wish upon another Lupie that their disease were more advanced? Seriously? What did you just say??? Yes, I sure did read that. So those of us without major organ involvement are somehow privileged and should experience damage so that we can better sympathize with your personal nightmare. Got it. I mean I have a damaged heart. I can’t remember ever wishing anyone else could experience my difficulties with that – even for a day – so they could be educated about it or so they could be humbled or something. I don’t wish my discomfort or ailments on anyone. I am also not lacking in compassion from my support network for that or anything else. When did it become acceptable to turn on each other? I am seeing some elitist snobbery that I really dislike. FYI, anyone with Lupus in any form has the potential for eventually developing organ involvement and damage. It is the thing we pray for others NOT to experience. That is our appointed place to stand. Save your bitterness for conversations with your deity about how to manage it.
Topic 2 is the vitriol over the present uproar on marriage equality. I don’t have a lot to say about my opinions on it, because there is no point. I will say this one thing however, and it is because again I cannot stand the vitriol being spewed from all sides. Why is it considered acceptable to make hateful statements while arguing that it is not acceptable to hate? I have seen some of THE ugliest and most violent suggestions of what should happen to people, and no I am not about to repeat them here. This was not coming from the religious sect arguing that gay marriage is wrong, although I have seen that as well in scores. I am talking about those that are pro on the subject. No one will be swayed to accept you when you suggest that people should be violated and abused, or make threats on them. If you believe in yourself, your life, and your choices, and the individual that you are, then be a fine example of that and stop acting like a homicidal maniac. It’s not an attractive color on anyone, no matter what your orientation is. I have tried surfing conversations because I am open-minded and unbiased. I have left conversations feeling like I needed a shower because of the horrible things I read. No, I am not referring to lifestyle statements, as that doesn‘t concern or affect me. I am referring to remarks that are tantamount to an assault – from those defending their right to their rights.
I’ll take you seriously when you show me that you really are about peace and love. How you have been treated is no excuse either. I don’t cut any slack to my Native brothers and sisters either on that one. We are in 2013, and we are adults. We make our own choices about how we live, and what we believe, how we present ourselves in this world. If you really believe in karma, you won’t inflict hatred in any form, on anyone, for any reason. Show me.
One of my favorite Maya Angelou quotes: “I can be changed by what happens to me, but I refuse to be reduced by it.”
I have plenty of reasons to be mad. I am caught between worlds in many aspects in my life, and held in the prison of an uncooperative and sick body that I constantly battle and bargain with to have my moments of life that so many people take for granted without thought. I have survived being beaten and damaged by someone that was never punished for their crimes. I have survived other terrible things inflicted also by individuals that were never punished. I am multicultural and often rejected by both sides for not fitting a mold. I am possibly too liberal-minded in some areas to be a true conservative, and I really don’t like labels anyway. I’m not living where I really want to be, and unable to change it just yet. I have had support and health insurance ripped out of my life due to illegal actions and false accusations on an upstanding individual, with no assurance that a legal case can be made to fix it. I still don’t have health insurance and I am a fairly sick lady. Oh yes, and now I am required to have insurance so I guess I have to pull that money out of somewhere. *cough* Should I go on griping some more? Why? We all have baggage, damage, and burdens. And?
I can be changed by what happens to me, but I REFUSE to be reduced by it. My life experiences are a part of who I am. How I embrace and process them, and then act on them, is my choice. It’s yours too.
Someone that I game with asked me a question a while back that I don’t think I’ve ever been asked directly before. I guess that would be why I’ve never answered it directly either, and the question made me think about the things that people don’t understand about chronic illness. It wouldn’t be the first time I thought about that. I just began to formulate more relatable responses because of the question.
What’s it like living with Lupus?
The odd thing is, in the course of that conversation I don’t think I ever did answer him directly. That’s why I’m writing here. Anyone that asks me that question again can get a clear picture without me forgetting something I meant to say.
It’s waking up uncertain about how you feel every morning.. until you first try to move. It’s a life of roulette. You spin that wheel every single day, and sometimes more than once in a day, and you wait to see what the result is. It could be anything, and you have no way to predict it or control it, although sometimes you can manipulate and take a guess. Sometimes you may even be right. Sometimes you’re surprised and it was wrong. Some surprises are good ones, and others are bad ones. I bet you thought I was saying that the surprise was a negative, huh? Yeah.. sometimes you guess things will be going badly and they DON’T. Those are the mornings when you have expended so much the previous day that you’re just certain the payback will be hard. It isn’t always. Once in a while you get an early Christmas and get away with your risky fun. That makes a lot of things worthwhile.
Risk for the ordinary person is doing something edgy, like hang-gliding or skiing. Risk in most people’s assessment is going beyond average activities and recreation. For most, it is the attempt to defy limitations of grand proportion and it is an act to impress self and others with a feat of tremendous effort. When your life is closed in by smaller limitations, those definitions change drastically. If your world is the house, and maybe the yard, and the occasional trip to the store, then risk is a completely different arena. It now includes things like driving an hour or more, or going to the beach, or even spending a few hours or more in a large shopping mall. For most people with Lupus, going to the beach is in fact a VERY big deal.. and for some it is something they will never again enjoy. Some will risk it, and even pay for it later when they knew they would. Having Lupus, and learning to live with it, means redefining life. Adaptation is the only way that you both survive and thrive with it.
It is true that I could easily tell you that having Lupus is terrible. I could tell you all about the random nature of your capabilities, the varying levels of pain from annoying to horrifying, even incapacitating. I could tell you that it’s never knowing if I can follow through on an activity that I’ve agreed to, and having no choice but to change or modify my plans.. and how that affects others in my life. I could tell you about the endless Dr appointments, and fights with Drs that seem to know less about my disease than I do. I could tell you all the many awful symptoms that can happen without notice, and much, much, much more. Yes, having Lupus sucks. My life however does not.
In my life I have two wonderful, living parents who are both in their 70s. They go out dancing, and to karaoke, and sometimes I get to go with them. I have a cherished only sibling, my big brother, and his family. I have a niece that I adore, and she adores me back, even when I can’t see her as often as I have always wished that I could. I have had in my life a grandmother to whom I owe so much of my life, and her love stays with me even now that she is gone. I have had friends that enriched my life, even when they chose to depart for selfish reasons. I still love the time that I had with them before. I have friends now in my life that understand the unpredictable and scarey nature of what having Lupus is like. I have some that don’t, but they’re valuable to me too. I love my photography, my art, my culture, my videography projects, my jewelry making, my walks when I can take them, and every waking moment that I can experience something new or beloved. I have love in my life. I have people that mean life to me. I have a life.
Those are the things I choose to share on a daily basis. The rest is just my pesky routine that I have to deal with. If I can’t get up right away when I open my eyes, I have my mobile and I peer into the day my friends are sharing in Facebook if nothing else.. until I am ready to sit up. There may be days that I feel trapped in a subpar body, but it doesn’t mean I stop living because of it. It makes me appreciate smaller successes more. When something bigger comes along.. it is just that much better. I could say that having Lupus has made me a better person. I don’t really have a reason to be shallow. Every step of my day has great meaning.
I am a survivor of suicide. Meaning.. someone in my family killed themself – many years ago, but it isn’t something that fades over time. You find ways to not think about it as much, but that’s about it. It is a horrible event for those left behind, plain and simple.
I don’t find jokes about suicide entertaining. I don’t have tolerance for people that use the threat of it for attention. I don’t have sympathy for people that act like a premature death is a solution for their problems. I’ve heard/seen the myriad of statements that one could imagine, from not wanting to live another 50 years “like this”, to the thinking “I don’t have anything to live for”, and frankly none of it impresses me. I have battled depression enough times in my life to know whereof I speak, and the key operative word there is “battled” – which is not lying down and letting it run over you several times. I also know overwhelming fatigue very, very well, and I live with it continuously myself. My illness doesn’t give me breaks either. It is what it is.
Is my life worth living? Why wouldn’t it be? One of the most pathetic arguements I’ve heard has been about how we are immortal beings, so why be afraid of moving on from here. My intent to embrace the life I have been given on this planet has nothing to do with “fear” of a permanent change of mortal address. I was placed here for a reason, so why should I be in a hurry to throw that gift away? Nobody likes to talk about this, because they’re either afraid of thinking about dying, or they’re afraid of offending someone else that is facing it, or considering it. Well, I’m not stupidly PC. I’m saying what I think about this. Someone has to sometime. Suicide is not powerful. It’s cowardly.
I do know “intolerable” pain. I know what it’s like to have pain so bad I cannot even stand up, and it doesn’t stop even if I don’t try. I’ve lived with that for intractable weeks, even months on end on multiple occasions. And? Life happens. Pain happens. So does a whole hell of a lot more. The truth is that you choose your focus. Deciding what you can’t do every morning is the same as deciding what you can do. If it’s more important to you that your focus is on the negative, then that will be your entire world. It is however a CHOICE – no denying that. Go ahead and insult the mind you were given. I have science on my side, as well as spiritual truths. That brain is more amazing than any computer man can build, and the intangible essence of who we are that is driving it is beyond belief. I choose to live THERE, not in my pain.
Excuses, excuses, that’s what I’m saying. The people that I know that whine the most quite visibly do not want help. When it is offered, they dodge and hem and haw, and duck out of the conversation. If you don’t want solutions, and a way to live your life with some dignity and respect, then don’t put your problems out there in the first place. The only reason to actually communicate with others is to connect with them. If you have a desire to connect, then you should have a desire to rise above. Begging for “poor you” responses, without an effort to recover… it’s unattractive at best.
I see people every single day with greater challenges than my own, and I allow them to inspire me. I am inspired by youthful energy, and by wisdom earned in years and experiences. I am encouraged by knowing people that have visited the brink and returned. In my worse moments, I remember that it is temporary and another good day will come. I look at all I have done, all that others have done, and I continue to breathe. It isn’t that difficult. Where is your focus? What do you value? Where do you invest yourself today?