Blog Archives

“Why Can’t You Work?” – Invisible Illness From the Inside


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.

T

10686815_316323431885041_7335455495085544114_n

You Were Fine a Minute Ago…


Tala's Tracks

Rheumatic autoimmune disease in particular has a habit of presenting symptoms that are unpredictable.  They can sneak up and take you to the ground unexpectedly, and mercilessly.  (For some people that is quite literal, not just metaphorical.)  I asked some of my friends for input on this because I’ve been mulling the topic over for a few days now, and I wanted to hear perspectives.  I am (anonymously) including some excerpts from that conversation here.  I hear them echoing my own experiences and frustrations.

The typical patient – anyone with Lupus, RA, Fibromyalgia, Lyme disease, Cushings, MS, Sickle Cell, Dysautonomia, Myofascial Pain, Chronic Fatigue, any Chronic pain… is always dealing with symptoms.  The amount, degree, and intensity varies, but we are nearly always symptomatic.  With a disease like Lupus, we don’t even have a true remission.  We can achieve clinical quiescence but to be totally symptom-free is not really a…

View original post 1,584 more words

At Least I Am Free


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.

T

Cards Dealt, and Choices at Hand


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.

Whole Foods for Better Lab Results


I do get questions fairly often about what I eat, since I don’t have a “typical American” dietary tendency. For the record, I don’t believe in “dieting” because it’s an unhealthy mindset as well as physical endeavor. I exercise the whole foods concept as much as possible and I don’t open a lot of cans. I buy real food and make real meals. I’ve created a list so many times for various people that I finally just saved it so I can reprint it.

When I talk about “whole foods”, I’m quite serious. You need the entire egg. For anyone that missed the update a few years ago, something in the white counteracts the cholesterol in the yolk, so quit worrying and eat it. You need the white part of orange peel, because that’s where the bioflavinoids are that you need for metabolising the vitamin C in the fruit. Forget about orange juice and eat an orange. Leave the peel on your potatoes – scrub them when you wash them instead – even for mashed. Dissecting food is the worst idea any society ever came up with for nutritional matters.

  • Fresh fruit (berries, citrus, bananas, nectarines, organic apples, plums, tomatoes, avocados)
  • Carrots cooked and with Smart Balance – the Carotene is primarily fiber-bound till cooked and it is fat soluble so you need something like that with oils (even a little real butter is ok) to really utilize it nutritionally.
  • Legumes like green beans & peas – and yes I even eat those raw sometimes, Black-Eyed Peas, Pinto & various beans.
  • Jasmine & wild rices (no instant!), soba noodles (buckwheat), rolled oats (also no instant)
  • Bulk granola from the health food store, oat cereals, grits, amaranth, quinoa
  • Whole seed bread with flax and sunflower, sometimes Sprouted Wheat bread, corn tortillas, Tandoori bread
  • Wheat thins, triscuits, Wasa crackers, tortilla chips (no transfat variety), and popcorn (air popper, no nuke bags)
  • Walnuts, almonds, peanuts, cashews, pumpkin seeds, dried peas, dry roasted soybeans, and sunflower seeds
  • Dried fruit like raisins, apricots, and cranberries
  • Carob chips, organic dark chocolate
  • Organic/natural peanut butter
  • Olive oil, Canola oil, Hemp oil, Apple Cider vinegar (Bragg’s unfiltered), Balsamic vinegar, Bragg’s Aminos (soy sauce w/ no sodium benzoate, alcohol, or wheat)
  • Tubers/roots (potatoes, sunchokes when I can find them, beets, turnips… and technically this is where carrots belong)
  • Other random items: Red onions, Bell peppers, avocadoes, tomatoes, and artichokes
  • High Omega-3 cage free eggs
  • Hormone free chicken and turkey
  • Fish (wild caught ocean, such as salmon, tuna, raw ahi, mackerel, sardine)
  • Hormone free beef – grass/range fed when I can afford it.
  • Yes I eat pork in moderation
  • If I eat lunchmeat I find one with no Nitrites
  • Nonfat/calcium fortified/lactose free milk, soy creamer, coconut milk
  • Cottage cheese, sharp cheddar, occasional other types of cheese
  • Plain yogurt for anything most people would use sour cream on or in
  • Lowfat fruit-on-the-bottom yogurt with real sugar – not corn syrup!
  • Fage (Greek yogurt)
  • Filtered water, Tonic water, No sweetener juices, Green tea, Ginseng tea, occasionally regular iced tea, rarely crafted sodas with sugar (not corn syrup)
  • My spices: Real Salt, black, red, & white peppers, granulated kelp, dill weed, sage, turmeric, mustard powder, onion powder
  • Condiments: Minced garlic, olive or canola oil mayonaisse, brown mustard, and not much else

Do I ever deviate from it? Some, but not much. This of course explains why my Dr is always so disappointed to find nothing wrong in my bloodwork even though I’m overweight by their standards to a level that they think I should have diabetes, a thyroid condition, and be on the verge of heart disease. I really don’t get it because while they’re hunting for some diabolical condition of neglect, I’m sitting in front of them and clearly not a sloppy person. I may not be svelt, but I’m not exactly a barge either. The rheumatologist was the only one to actually LOOK at me, then look me in the eyes and tell me that he himself would not term me as “obese” but it’s the chart. The chart. The chart that doesn’t take individuality, general build, and musculature into consideration. The chart that would have me in a size 7 because of my height and I’d be gaunt and weak. Give me a break. ONE Dr looked at me and asked, “What’s your secret?” My reply was what I said above… food. She looked confused and so I explained that I don’t buy prepared “meals” (if that’s what you call them).

Does no one bother to cook anymore? Just a clue: Heating something in the microwave does not qualify as cooking, and opening cans and boxes does not qualify as preparing a meal. Honestly, I’ve heard the arguement about time and effort but I can walk into my kitchen right now and make a fabulous salad in 5 minutes flat because I have all the ingredients right there in my fridge. It’s not that difficult. I keep all of my crucial spices on a double-deck lazy susan my grandmother gave me. Right near that is the bottle of olive oil, and the apple cider vinegar. If people would organize their workspace in the kitchen well, they wouldn’t have to worry about how this is done. Excuses, excuses, excuses. I may not be in perfect health but I know the difference made by what I am doing. If I don’t stay on track, I feel it. To those who would say that they don’t have any real health issues to motivate them to eat right… wait for it. It eventually catches up. I’m not talking about never having a burger and fries. Even I’m not that militant. I love french fries. I like the occasional licorice, sorbet, or gummy worms. I just don’t have them every day – or even every week. I have a lifestyle that allows me the occasional indulgence without fear.

To anyone that says they can’t afford to eat this way and asks “Doesn’t it cost more?” Maybe. Does it cost you more to pay your Dr to fix things than it costs me to eat good food and make fewer appointments? Likely. Would I rather cut corners other places to feel better and live longer? Definitely. I want a quality of life while I’m here that allows me to do all the things I have yet to do on my own two feet.

Besides… it tastes better.

Tala

%d bloggers like this: