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’ve been mulling over how to address this very directly for a few weeks now. As I am watching friends go through the same questions that I have faced in the past, I think it’s time to spell some things out. If you have a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia and Dysautonomia… I don’t say something like this often but I am BEGGING YOU to take the time to read this blog entry. If you truly care about that person, take a few minutes out of this one day and inform yourself about what their day will be like today. PLEASE.
I want to encapsulate as much pertinent information as I can here. It does however require some insights that may be foreign to the average healthy individual. I cannot ask you to put yourselves in our shoes, because you’ve never been in them. You can only use your imagination and then from there take our word for it about the things that you have not fully experienced. I will also add that I genuinely hope that everyone reading this that has not experienced one of these conditions NEVER DOES, and I mean that. I literally would not wish my life on my worst enemy (and I have some people out there that I can actually say that I hate.. as strong of a word as that is.)
I have written before what my day is like from the time I wake up and the tedium that goes into each move and decision. I won’t detail it the same way again, because it’s already been done. I will shorten it here by saying that as a Lupus and Fibromyalgia patient, with autonomic dysfunction and other comorbid conditions, every single finite detail has to be approached for what it is singularly, when a healthy individual can execute several in one smooth motion. I don’t open my eyes immediately. I don’t sit up suddenly. I don’t hop out of bed and walk anywhere without first sitting up for a minute to see how I feel, then stopping again once I am on my feet for the same reason – before taking one step. Imagine your whole day having to be analyzed that way whenever there is a change in activity, venue, or position. If I have been in the chair at my desk for more than a few minutes, when I stand up I have to be careful. My blood pressure drops 20 to 30 points (medically documented) and people with that condition are at risk for passing out. It’s called Orthostatic Hypotension, and happens with something called Postural Orthostatic Tachycardia Syndrome (POTS) which is a Dysautonomia condition. This is Dysautonomia Awareness Month, by the way. You might want to take the time to look that up and learn a little. It is neurological, and incurable – just like the other diseases I’ve mentioned. They can all only be treated and managed, and most of them are progressive. At the very least, some of them cause progressive symptomatic manifestation, even if they don’t cause direct damage to the patient’s body. The stress caused by lack of sleep, lack of REM sleep, difficulty absorbing nutrients, adrenal exhaustion, cardiac strain, dehydration, constant firing in the central nervous system, and more than I could possibly name here has a deleterious effect on you. It’s debilitating, even when the disease itself is not considered progressive and debilitating (as with Fibromyalgia). The human body can only endure so much strain over time. Things begin to break down. Other diseases and damage creep in. In the case of something like Lupus, internal organs take damage during flares because the immune system is attacking healthy tissues in every possible system in the body. You cannot predict where it will attack either. Sometimes it takes time to find the problem and try to get it under control. This is why some Lupus patients end up needing chemotherapy as a treatment. Their immune system is so over-active and out of control that it has to be severely suppressed. That’s to keep us from… you know… dying. People die from the complications of Lupus every day. It’s that blunt.
Now that I’ve explained the basics of the diseases… here is why it is disabling enough to stop a lot of us from holding employment. Let me first say that I applaud anyone that is able to work, and I hope you continue for a long time. Your strength is admirable and I’m happy that you have your conditions managed well enough to allow it. For our healthy friends, we’ll address what happens with those of us that can’t, when we can’t. One preface: This is variable for some people. Sometimes a patient is able to go back to work and continue for a while, and then they crash again. Sometimes it’s temporary and sometimes it’s not. Autoimmune patients tend to be overachievers, people that started working young and were driven to continue for many years without a break. People that started college young. Women that excelled in fields that are primarily male-dominated. Many were athletes. We tend to go until we drop. When that happens, it’s a hard crash. We tend to ignore pain and fatigue because it’s just in our nature to do so.. but when you ignore your body’s signals, it can cause a lot of damage. Most especially in the case of a disease that is as destructive as Systemic Lupus and it’s friends. To be clear, there is no way to mediate how this disease will eventually manifest to any sufficient degree. It absolutely IS progressive, even when caught early and treated early. The only thing you can do with a medication like Plaquenil (what I take) is slow it down, and how much you slow it down depends on the individual – things out of our control entirely, like genetics, environmental exposures, the weather, and the randomness of the disease itself. We only have control over a few things and I encourage other patients every single day to do what they are able, from eating right to exercise and reducing stress where they can. That’s important for regaining and maintaining quality of life. It is not however a stop sign for Lupus. We’re all on a timer that we have some input for but no real control over. It’s also… just that blunt. Those of us that have the disease are fully aware of it even when we don’t discuss it openly. We are trying to enjoy the years we have with as best quality as we can get without dwelling on the future decline we may face.
To interject before anyone thinks it, this is not the same as the normal decline of age in a healthy individual. We face all of the things that you will but sometimes 20 to 30 years earlier than we should, and more of them together than the average healthy individual. It’s a storm and it arrives too soon. Please don’t try to compare it to your normal aging experience. If you already had your healthy youth, then you don’t know what it’s like to miss out on that.
Just as a side thought… When our acquaintances keep asking intrusive questions about WHY can’t you do this, or WHY can’t you do that, it makes us have to stop and think about the negatives a bit too much. I don’t mind people asking questions about my illness and I am an open book. My entire world however is about awareness and advocacy. This IS my job, along with taking care of me so that I can stay functional enough to create the awareness videos and other projects. I have committed to that alone because I am able to do that. I do it for everyone that cannot. Some people can’t do what I do, and all they can do is try to manage their symptoms and the progression of their illness in silence. Don’t push them too hard. They may be more fragile than you realize. Words hurt. Disbelief HURTS. Badgering in areas where you do not understand the reasons and circumstances is not helpful to anyone and it seriously just makes you look like an ass. I can’t say it any other way. If that sounds offensive, consider it a dish back out for the offenses dished out onto us. Even if you are someone that believes in “tough love” (and I personally do, for the record), it’s not your place to chastise someone that is already fighting to survive and to keep their head above water. Unless you have actually taken the time to be an intimate part of their support system, and you have earned to be entrusted with the details of what their day is like, you honestly have no idea what you are talking about. I hate to be so exclusive, but I am being frank for a reason. I have seen too many friends being harassed and hurt by people that think they mean well.
I am not able to hold a job. If I dressed myself up and went for an interview right now, I could make myself appear qualified (other than a really out of date resume’) and lie to an employer about being reliable. I would have to lie, because I am not reliable. The question has got to be in a lot of people’s minds as to why I can hike, camp, and do other outdoor sports, and have this big project for Half Dome planned, but I can’t hold a job. This is why I started the video series this year on my YouTube channel called “The Price We Pay”. I can do it, on my own schedule, in the timing that my body allows, and then I pay for it later. Up until this year, I wasn’t sharing the aftermath. I was only showing the accomplishments to encourage others. I realized they were missing something vital about my process and not getting the full picture, and I realized that had to change. An employer isn’t going to accept you calling up one morning and saying that you can’t be in today, maybe not tomorrow or the next few days, but you’re not really sure… and it could be a few weeks or months, can’t say. That is the reality of Autoimmune Diseases in particular, and several neurological conditions as well. I happen to have some of each – that’s a common problem. We all see wealthy celebrities “forging ahead” and continuing to work as well, and they are probably spending a ton of money on the very best treatments so they can stay on their feet longer, but I guarantee you they are crashing later too. You just don’t SEE it happen. I am willing to show the world my pain afterwards, but not everyone has the emotional strength to be that honest either. Understand that on my own schedule, I can cancel a plan or activity without notice. It affects no one but me. I can decide that even though last night I thought I was going to get up early and hike, today I just can’t. I do that on a regular basis. Not everyone knows about that part; it’s not important to announce. I can also guarantee you that anyone else that you know with one of these diseases is doing the exact same thing. Again… an employer cannot accommodate that. They will not. There are a few cases where someone manages to get a work-at-home situation but it’s not terribly common. It usually requires some specialized experience or skill too, or having had the job in a location for a time first. Some people are also not equipped to meet the deadlines those type of jobs require. They may be too dysfunctional even at home to be reliable there.
There is a well-known set of statements that all of us in the rheumatic autoimmune community have seen and heard repetitively.
One of them goes like this: My friend so-and-so has that and they work full time.
Another: My aunt had that and she took aspirin and got on with her life. She was just fine.
Also: I have back pain too but I have to get things done and I power through it.
Stop telling us that life is hard. We are fully aware of that, and in fact we empathize with whatever aches and pains anyone on the planet has had to endure – probably more than you are capable of understanding, in reality. Some of us (not me) started off with normal, healthy lives, and had many years of activity and athleticism, and great memories that are now haunting us. Personally, I was born not quite right. I’ve had chronic pain since childhood and I have no idea what it’s like to have a totally pain-free day. Chew on that concept for a few minutes. You still want to be me? Do you still want all of my “spare time” to enjoy what I endure? I doubt it. I have moments where I am having fun like anyone else. You really do not want what goes with the copious “spare time” though. Trust me.
If you have never read The Spoon Theory, please look it up. It’s a great analogy that explains how our energy is limited for everything we have to get done in a day, even ordinary things that everyone does. It’s written by Christine Miserandino and a copy can be found on the Lupus Foundation of America’s website.
I wish there were a way to adequately describe to a healthy person, or someone with the usual and common health conditions that happen to many and come with age… the depth of what it is like to have an immune system that is literally trying to KILL YOU. If you’ve seen someone say that and dismissed it, you need to understand that it is not being stated merely as an expression.. like when someone says “My feet are killing me.” No. I mean KILL YOU. Dead. Your immune system is supposed to protect you. It’s a ready and armed military unit, and when it goes haywire like ours has, it will look for anything to attack. Your eyesight. Your heart (like me). Your kidneys. Your muscles (me). Your connective tissues (most of us). Your central nervous system (I have that too). Your skin. Your reproductive organs. Your teeth and gums. Your bones. Your hair. Everything is subject to attack. I’ve lost about 40% of the hair I used to have, maybe more. That’s “just” an emotional impact but I still feel it. That started before I was even 30 yrs old. Sometimes, some days, there is so much pain and fatigue that you can’t tell where it is all coming from. It’s just everywhere. Others maybe it’s one or two joints, but something still hurts. When you have neurological involvement, along with the random stabs that feel like someone is sticking you with an ice pick, you’re simply so depleted that your muscles won’t respond as needed. I can go from one day working with weights at the gym to the next day unable to crack the seal on a new water bottle. There is no way to predict these changes. How does one plan a life around that? We can’t make firm plans for anything. Don’t anyone dare try to tell me that life is random, and no one is assured of things going perfectly one day to the next. I am totally aware of that too. You however, as a healthy individual, can go to bed at night with relative certainty that when you wake up tomorrow your body will be as functional as it was when you went to lie down. Most of the time, there won’t be any significant changes in the night. For us… that is never, EVER true. Every single day is faced as a new slate with unknown factors that could be good surprises, or a month-long horror show.
This is the one reason it is so important for an autoimmune patient to learn to embrace moments and love every second of the ones that work out right. This is why some of us reach hard to do the occasional off the wall thing like a tandem skydive, or a trip that is offered to us, or any experience that we’ve long dreamt about. It’s almost a requirement for us to have a bucket list because it gives us reasons to keep breathing at times. Not every disability is visible. Having a disability also does not require us to hole up in the house, look miserable, and cut off all social contacts like we aren’t fit for humanity. Yet… we always, always have people looking sideways at us if we even dare to crack a smile or laugh at a joke. God forbid one of us goes out for an ice cream cone, or sees a movie, because we are expected to not have a life at all. We are not allowed to enjoy anything and talk about it because the second that we do, someone is there asking well if you can do that, why can’t you do THIS? If I am on my own time, and I am in control of saying when I have to stop, possibly go home, probably lie down, then you can darn well shut your mouth about what I do with my “spare time”. Having gone through the agony that I did in 2006 when I couldn’t even stand up under my own power, if I find enjoyment in something I am going to do it! Your approval is neither required nor desired.
If a cancer patient had wishes, people would stand up and cheer them on. They would say how sweet it was of people to provide them opportunities, and how brave they are for still participating in life. Autoimmune and neuro patients though? If we take one step out the door for anything other than a Dr appointment, suddenly there must be “nothing wrong with us”, and we can’t possibly be that sick. ARE YOU SERIOUS WITH THAT? Get out of here. If that’s how you think of me or any of my friends then get off my blog, get off my social media, unfriend me, and don’t ever talk to me again! I am done. If anyone wants me to choose, here it is. Those that have been there for me through the worst, and cheered me on both through that and the best… those that have proven they are trustworthy, honorable, sincere, and genuinely loving friends are deeply appreciated. You will go with me all the way to Half Dome, and more. I love you for that. Anyone that thinks any of us are faking it, milking it, or making more of it than it is, BYE. Either get educated and get with the program or GTFO. NO MORE ABUSE.
Be a grown-up. Realize that you don’t know everything about someone else’s life. Try asking and listening instead of talking and assuming. It develops character.
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!
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 hope that my friends and family will take a few minutes to read this. I have a few important sentiments to relate to the people I love, and the people that I like but maybe don’t know that well yet too. ;-) It has come to my attention that for many people the word “awareness” can be an emotional hot button, and I have always had a goal to change the face of such campaigns. I just want to share some realistic views about who I am and what motivates me. I do not consider myself to be defined by my illness. If I allowed that, no one would ever see me out of the house. I know people that live that way. I can’t do that.
Right at the top I want to state that Lupus is not the only thing I am interested in talking about. Right this minute, I am talking about it more because it is Lupus Awareness Month. This is our time to work harder and get information out there and attention for the LFA, and it is important because we need funds to research, and we need support. Because of that, I put a 2 or 3 things a day on my profile – give or take – to that end. If it bothers you, unsubscribe. I wish you wouldn’t, but it’s your choice. To those that have been supportive and good listeners, and unafraid to discuss it with me, I bow humbly and thank you. To those that seem afraid to ask me questions… STOP IT. I am open about it for a reason, and I am not afraid to talk about it or answer any serious questions. To follow that up however, I must point out that I have always had very real interests that haven’t gone away. I love the outdoors and have camped and hiked since I was a child, and I have studied wildlife and conservation. I even had my yard set up as a wildlife habitat when I lived in Banning, and documented the great variety of species that visited and lived on my property. There is a lot more in Southern CA than many people even realize. I love to swim. I have been a dancer, though I had to take a step back from it for a long time now. I have a singing voice, and used to go to Karaoke with my parents every week when we lived close enough together for it. I am an artist – I work with pencil and water color mostly. I am a traditional crafter (Cherokee nation), so I do beadwork as well when I can. I am also an Intertribal dancer – Southern Cloth, and a Stompdancer. I have studied herbal/natural medicine, nutritional health, pathology, medical terminology, and a smattering of other things. Those are the things that define me, along with my experiences in life. The illness is something that I carry, and live with, and help others deal with as much as I can by running support networks. It is something that I work hard for awareness about because many people need it. It does not however define the person that I am today.
I am very pro on not living your life from a recliner or your bed unless you’re totally incapacitated to an inability to get out of it. Many years ago I remember Richard Simmons telling people that were severely overweight and struggling, to do whatever you are able to do where you are at. He said if all you can do is raise your arms, then raise your arms. At my lowest point in 2006, when I lost half a year to what was then an unknown ailment, I was unable to walk. I couldn’t stand up for more than a few seconds at a time. What pulled me out of the mental state that I sunk to after months on end of this was that statement… Do what you are able to do. It took a lot for me to back out of the medication cycle and find a way to manage the pain and recover. I have slipped back into that severe pain over, and over, and over since about 2001, and it is what keeps me from seeing people sometimes. When it happens, I can barely walk even in my house. It does not however take me down mentally anymore, because I know that when the flare ends the pain will subside as well.. and I can go back to a semi-normal routine again. It is not an end-point for me. It is not “where I live”. I live with it, but it’s not who I am. I try to convey to other Lupus patients that there is always hope, and it is not reserved for the hope for a cure. Hope is about each day, moment by moment, and taking advantage of each one that is such a gift. It’s about sharing your time and energy with people that you love, and savoring it.
I am reluctant to convey certain lines of thinking. I see some posts by other Lupies that are angry. Although I understand why, I can’t allow that in my life. They feel slighted by both their disease and the way they are treated by others, but to hold onto that rage will only eat them up. Ignorance is curable, after all. So the angry posts about not judging me, and you haven’t walked in my shoes, won’t come from me. I have even seen some wishing that others could experience what they are going through, and I am horrified at the thought. I literally would not wish this on my worst enemies. No. There is no point. Instead, I would rather focus on curing ignorance and helping myself walk through my days the best way that I can.
Being an activist of any sort comes with pitfalls. This thing of people being afraid to talk to you is just one of them. Another is that every time someone finds out you have Lupus, and they don’t know much about it, you end up having to explain to them that it’s not contagious. It’s genetic. Then invariably someone eventually asks you if it’s terminal. There is no short answer for that. Let me just say that birth is a death sentence. We all die. Some know better what will be their end, or maybe even some idea of when.. but we all die. Do I believe that eventually some complication of this disease will be my end? Not really. I believe that something will, but I don’t have a clue what – or when. Heck, it could be my heart one day. It’s already damaged and that could be because of the Lupus, or it could be something else. They don’t know. It could be a Mack truck. I don’t know! (I’m smiling wryly here.) No one knows. Even if you get a terminal diagnosis, you don’t know if it could end up something else before it gets to that point. We are all on mysterious paths in life. That said, my illness is fairly well managed now. I fought for that, and I fought hard. I will simply continue to do that because it is a part of my own path. It’s that simple.
I may write a descriptive soon of what my day is like. Not today. Today I simply want to say to my loved ones of many backgrounds that I appreciate those that have stood by me over the years in their individual ways. I want to say thank you to those that have taken the time to actually ask me about this “Spoon Theory” I mentioned. Your attentiveness is precious to me. Your genuine interest has been heart-warming. Believe me, it is not that common.
A few have chosen to make their own stories into their own reality. It makes me sad, but I have to move on from it. A few have decided that they know all about me and my life, and they may have read a paragraph and thought themselves well-educated. In some cases, I have been left in the dark for years as to what the problem is between us. It makes me sad to lose what I thought were friends, but I cannot change what another chooses to believe. All I ask of people is to talk to me when they have a question. Don’t engage in idle gossip and presumptions. It’s really unbecoming.
That’s all for now. All my love to all my loyal friends. You may not know how much you have done for me, simply by being there or smiling and making me laugh with jokes. Laughter is amazing. You can never have too much joy in your life. I may not be able to see you as often as I’d like (face to face), but as my sweet grandmother used to tell me.. rest her soul… “You’re thought of a lot more than you are seen.” You can believe that is real.
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.
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.