Blog Archives

Fantastic Little Snowflakes, Each and Every One


Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t!  The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all.  We’re not special.

Here are some remarks I ran into on a popular page this morning that set me off:

I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea. 

[My thought on this is that someone is lying.  You NEED to exercise, and unless you are a quadriplegic, you have no excuses.  It doesn’t matter whether that means just taking a walk, or raising your arms over your head a few times, or wiggling your toes, MOVE YOUR BODY!  If you are sitting around, doing nothing, you’re hurting yourself worse than taking a medication ever could.]


-I refuse to take drugs with their unwanted side effects. I suffer with my pain. Taking drugs to ease my pain will only kill me in another way. Nope will just deal with my pain even when it gets unbearable! 
[Clearly this person has never hit “unbearable”…. I have.]

-I so agree. Pharmaceuticals scare me to death.
[News flash, your heart stopping can kill you too.  Some pharmaceuticals do serve a purpose.]

-You be never had a kidney stone.
[Someone with experience and an intelligent comment.]

-I’ve never had a kidney stone, but I have a dislocated shoulder that destroyed the rotator cuff and has been this way for 12 years, I’ve also broken my back and wrist and the only drug I took was aspirin… and not Bayer as I refuse to support them.
[I didn’t realize we were in the company of such greatness.  I’m not worthy. *bows down*]

You will not get kidney stones, [name omitted], if you are on a healthy diet.
[Well, if that’s not the biggest bunch of hooey I’ve heard all week, I don’t know what is.]


I believe the only medicines we need god gave us is water and vegetables. We don’t need to feed drug companies pocket when all they do, is help kill us with their chemicals.
[Belief is a wonderful thing.  Let me know how that works out for you when your genetics catch up with you, because they get everyone sooner or later.  Birth is a death sentence, and these imperfect bodies DO break down, whether it happens when you are 9 or 90.  It happens.]


The only medicine the cures anything when properly used is antibiotics, the rest of the 250million medications in the Physicians guide only treat symptoms.. Hoping that your body will heal itself before whatever is wrong wears you down.
[I can’t even make a sarcastic remark here because that was so ignorant that it speaks for itself.]


Here is how I finally felt compelled to respond to the stream of ignorance:

[Name omitted] – and the rest of you holier than thou commenters, shame on you.  I AM minimally medicated, and I AM one of those proponents of eating whole foods, anti-inflammatory, avoiding preservatives, and anything else you can think of and I DO THOSE THINGS consistently in my life.  I promote it, I teach my friends about it, I live it without deviation, and it has given me back a lot of my life.

BUT

How dare any of you smart off about chronic illness, not understanding what that life is like?  How dare any of you have an opinion about how someone else needs to handle their issues?  Do what YOU do for YOU and stop being so high and mighty.  Chronic illness, such as LUPUS (which I have, among other things) is not curable by medicine or by how you eat, either one.  It requires a genetic predisposition that you are born with to even develop it in the first place, and it’s not coming from modern “agra”, or “pharma” either one, as the disease existed long before those came onto the scene.  Education is a wonderful thing!  Get some.  Triggers that put rheumatic autoimmune diseases into motion vary, and I will only agree that there are *some* modern conventions that contribute to it, but they did not create it.  In the end, the result is the same.  You have a disease that isn’t going away and can only be managed. I have done pretty darn well for myself too, going from unable to walk in 2006 to I’m out hiking again in 2014.  I am not however a professional athlete, and never will be.  I still have to manage my energy levels, consider how I feel at each given event, week, day, even moment, while I make my decisions about activities.  No one else can do that for me, and no one else can tell me HOW to do those things.  It’s my own responsibility.  It is also my own responsibility to now take a beta blocker because my heart is damaged.  Eating right isn’t going to fix that issue, nor will it make the hereditary palpitations or dysautonomia go away.  It takes *both* a medication and eating right (and knowing how to reduce stresses of all types) to manage that condition.

Some of you act like I should throw my pills in the ocean.  If I do that, I’ll be dead and you won’t have to listen to me scream about this stuff anymore.  I guess you would prefer that.  In the mean time, I will be so crippled up that I won’t be able to walk and possibly not type much and you still won’t have to listen to me.  Is that your goal?  I take Plaquenil (a biologic) to manage my Lupus symptoms because my pain levels were too intolerable.  Let me say this about that… I can take a lot of pain – probably a hell of a lot more than many of you.  I also eat correctly now to deal with inflammation and everything else.  At the end of the day however, some of us just have such severe conditions that we need a little assist.  That is what medicine was always supposed to be.  An assist.  That’s how I utilize it.  Does no one understand “happy medium” anymore?  Anyone?  Anywhere?  Even ancient medicine as in my own culture (Native American) is still medicine and still utilizes chemical compounds from plants.  I have training in that as well, but it’s not sufficient to manage what I live with.  That’s the bottom line.  I enjoy being able to walk.  I enjoy not having my heart stop suddenly.  It’s the little things, eh?

If it’s possible for an individual to entirely eschew medication, then I am always happy for them.  I even have friends with Lupus that have been able to do that – for the most part.  One uses the very occasional pain med when it becomes so unbearable that she cannot even sleep for days on end.  Another is going through a recent flare due to terrible life circumstances, and has had to go back on some other meds TEMPORARILY.  She does not see it as a permanent switch back.  I respect those choices, the same as I respect the choices of those that want to just suffer (though I find it insane), and those that are able to manage without any and feel better, and those that stay on more meds because it is all that has worked for them.  We are all individuals, and all on a path, and all learning, and none of us have a right to turn our noses up at the necessary decisions that others make.  You are not in my shoes.  You do not know my pain.  You do not know how my own body and mind process that pain.  It is the height of arrogance to tell someone else that they should do precisely as you have done because you have it alllll figured out.  [Name omitted] is 100% correct here.  Chronic illness is a beast that you cannot understand unless you have lived with it – yourself or a close loved one, either.

[Name omitted], not everything is curable or 100% manageable with eating the right food.  That is a fact.  You can improve your conditions, and symptoms – and I will even say that you can *always* get some level of improvement by doing so.  That does not mean that it makes every single condition go away, or improve enough for everyone to function the same.  We live in flawed, imperfect bodies with very individual needs.  This is not a one size fits all scenario.  So try developing a little compassion for the needs of others.

Why did I write such a long comment?  Because I am fed up with seeing ignorant remarks like this and a bunch others on this thread.  I am happy for anyone that has been able to get better results, but you all are not representative of the entire population.  I bust my a** to “eat right”, to exercise (as much as I am able and sometimes more than I should and I pay for it), and adapt so I can live my life, and do more than I used to, and encourage others to do the same, and stay in a positive and hopeful mindset, and set fantastic goals, and everything else you could possibly come up with, including consuming turmeric, pineapple, avocado, and everything else you could throw at me…… BUT….. sometimes we need a medical assist.  Let’s try to show some respect for those that do and stop putting them down for wanting to stay alive and be able to get out of bed in the morning.  We all do what we are able and continue to learn along the way.


Yep.  I said it.

We are all as unique as snowflakes.  We have different DNA patterns, different flaws and imperfections, different advantages, different experiences and exposures, different environments and life paths, and our outcomes and needs are very individual.  Along the way, we can only make comparisons.  We can find others with whom we identify on some level, in some area, but no one is a carbon copy of another – not even identical twins.  There are no living clones at this time, and even if it does ever happen they still will not be precisely the same once they have taken a few steps into life and had experiences and exposures in this world.  That is the wonder of life itself.  Embrace that, and you can get on with it.

I lost an old friend recently.  He hit “unbearable” and just couldn’t anymore.  I have been there myself, as I said.  I grieve the loss and what could have been, but at the same time I cannot judge.  There is not much I can say about it other than that it hurts deeply that he is gone, and that he felt that he had to just let go of life.  Anyone that cannot understand what goes through a person’s mind at that stage has never been there themselves.  The words are used far too flippantly these days.  R.I.P., my friend.

T

*** [Edit – additional thought]: Just as an added note, regarding pain (which is not the only thing people take medication for, and “pain medication” is not the only kind of med that treats conditions that cause pain)…. Pain, when intense and intractable, causes stresses on the body that in turn causes damage. Just for information sake. There are valid reasons in some situations for treating pain.  While it is inspirational to see someone able to tolerate and push through, it is NOT the right choice in all situations 100% of the time.  Adrenals become exhausted, blood pressure spikes, and the constant stress can easily elevate inflammation levels.  Continuous pain without relief is not a healthy condition.  It even interferes with reparation processes for healing.  Lack of sleep resulting from severe pain does even more damage than I can go into here, including screwing up hormone balances.  It’s complex and to be taken very seriously.  So if you think butching up and bearing all of it is impressive…. it’s not.  Know when enough is enough, please.

Strong

Advertisements

Thriving or Surviving?


This is long, but worth it.  What a day in my life is like….  Followed by how I choose to view the experience.  I don’t talk often about the details of my health challenges in-depth, because it usually serves no purpose.  I want to take the time to be clear that even my good days are not easy, and I am no different than anyone else in that regard.  It is how I decided I am going to manage these things that makes a difference.  Anyone can make that choice, and do it every single day.  It is a daily decision.

When I wake up, my mouth often feels very dry – about as dry as my eyes felt when I went to bed the night before.  I can feel stiffness in my connective tissues, from my neck to my feet.  I never know which joints or muscles are going to be sore, but it’s always something.  My body usually feels like lead, and I have to stretch and turn over a time or two before I feel the energy to roll up to a sitting position (the way I was taught to in physical therapy to protect my lower back).  I have to wait a few seconds to adjust to being upright, and then again use what I was taught in PT to safely stand without straining my low back and my knees.  Then I have to wait a few more seconds to adjust to being on my feet before taking a step.  The first few steps are done carefully, so as not to strain anything in my feet, ankles, and back that has tightened up in my sleep.  How many “spoons” have I used at this point?  Unknown.  (Look up “The Spoon Theory”, if you have not yet read it.)  I make sure to drink some water first thing when I’m up as well.  Low blood volume doesn’t go well with left ventricular hypertrophy (my heart condition).

At this point I am assessing how my bronchial area feels today.  Does it hurt to take a breath?  Am I wheezy?  Congested?  Too dry?  I am also finding out how cooperative my nerves and muscles are as I walk down the hall to the bathroom and splash cool water on my face to ease any puffiness around my eyes.  How bad does the 2nd metatarsal in my left foot hurt today (it always hurts, just how much varies)?  How bad is my right ankle cracking?  Which one of my knees feels unstable today?  How bad is the “tennis elbow” (both sides), and do I have to be careful with gripping and lifting things today because of it?  Do I need to use either of my inhalers?  Which one?  Is there irritation/inflammation, or is my airway feeling constricted?  I never know when I wake up if it will be a bad allergy day with uncontrollable sneezing, wheezing, coughing, or not.  I have steroidal nose spray, a steroidal inhaler, and my albuterol.  Mix and match.

Everything to this point is also affected by the season.  If it is Winter, the process is slower because the cold weather not only puts more strain on my joints and any arthritic areas, but also takes a toll on the vascular system in my extremities – I have Raynaud’s Syndrome.  If it’s Summer, I may be dehydrated from the day prior (and I do drink a lot of water, believe me), or simply overtaxed by the heat.  I have a few conditions that make me hypersensitive to extreme temperatures and temperature swings, as well as barometric pressure changes.  I have Fibromyalgia and Dysautonomia, as well as Systemic Lupus and Raynaud’s.  I am photosensitive, so I have to very strictly protect myself from UV exposure when I am out on sunny days.  Sometimes those measures fail to be sufficient, and I am paying the price for it by the next day.  That reaction could last days, or possibly weeks.  I haven’t even made it to the kitchen for breakfast yet….  I’m still in the bathroom putting aloe gel on my forearms because they are tender, dry, and warm from inflammation of the skin.  That’s any time of the year.

I have to brush my hair too, by the way.  That often involves retrieving my brush from the floor a couple of times because my nerves misfire and I drop it.  It might be a morning when I am just too stiff and sore to function without a hot shower before I even eat breakfast, so I may have to step over the edge of the tub to get in and out as well.  That’s a normal action for a healthy person, but for me it is a place of caution.  I have a sliding glass shower door, so thankfully I have a sturdy frame to hold over my head to prevent falls.. but if I don’t watch that foot lift, clipping the edge of that frame with my toes is an agony I can’t even begin to describe.  I’ve done it enough times to move pretty slow these days.  When you’re tired…. sometimes you just miss.  Or maybe don’t miss would be more accurate.  Ouch.  Presumably that shower loosened up my muscles enough to make it easier to dress for the day.  This is on a day that I am NOT flaring, to be clear.  There are days that my only goal is to make meals, check messages, and take it easy.  I just try to prevent very many of those from stacking up.

Breakfast these days is usually a fresh fruit and vegetable smoothie.  I made that change one year ago, and haven’t regretted it for one second.  Occasionally I will make something more “traditional” like eggs, cheese, bacon (in moderation), sometimes with corn tortillas, sourdough toast, or a gluten-free bagel.  Once in a while I will have potatoes with that.  Sometimes I just have a Larabar or BelVita wafers and some almond milk.  What I eat, and how much I eat, varies depending on my energy needs for that hour of the day and whether or not I feel nauseated that morning – a common problem with autoimmune disease, for no definable reason.  I also continue to drink more water at this point and through the rest of the day.  I drink a lot of water.  I have to.  I have to take my heart and BP meds.  I have to take my Plaquenil along the way – the antimalarial med that tones down the over reactive receptors in my body and keep my immune system in check.  I also have a bunch of vitamin supplements to remember.  One-a-day chewable (thank you Trader Joe’s), D3, Chromium picolinate, krill oil, bromelain (for the same reason I eat fresh pineapple almost every day – anti-inflammatory), primrose oil, ALA, carnitine, biotin (to manage my hair and nail problems)…. I’ll stop there.  In that smoothie, by the way, there are chia seeds, hemp seed nuts, turmeric, ginger, and cinnamon (all 3 anti inflammatory), and cacao nibs consistently.  Those are part of my necessary supplementation.  So are the avocados that I eat every day.  I avoid as many processed foods and preservatives as I can.  I don’t eat candy bars.  I don’t eat ice cream.  I don’t drink commercial sodas (the rarely occasional crafted type with sugar, not HFCS).  I don’t get fast food burgers and fries.  I don’t go out for pizza – haven’t in many years.  Does this sound dreary to anyone?  I figured I would ask at this point.  Think it over, and you can even post your reaction to the idea in a comment if you feel like it.  I’ve posted a blog entry before of what I do and don’t eat, if you’re curious for a detailed rundown before commenting.

It can be found here:
http://talastracks.wordpress.com/2013/11/23/my-personal-dietary-choices-for-those-inquiring/

Does that make you interested, or repelled?  I’ve seen all manner of reactions to it.  One person said one time that they felt “overwhelmed”.  Let me state plainly here that I made these changes over a matter of YEARS, and the most drastic changes were one year ago.  No one can switch everything out overnight unless they are independently wealthy and have the intestinal fortitude of Hercules.  Seriously.  Finding proper resolve takes work.  I’m not perfect either, but I don’t dwell on my shortcomings.  There is no point in doing that.  Somewhere you have to pick a spot and start there.  That’s all anyone can do.

To shorthand meals, I eat every 2 to 3 hours in the day to keep my blood sugar stable.  I make meals from scratch and create systems that make that easy to manage.  I keep it simple.  I put away leftovers after serving myself a reasonable portion.  I am not compelled to eat what I do not need to eat – food is a utility for fueling my body, not an emotional event.

To shorthand the rest of my day… everything continues a lot like the morning that I described.  I have to decide what clothing is comfortable to wear, depending on my Fibromyalgia symptoms and whether my autonomic system is dysregulating and making me uncomfortable.  That could be temperature, or how sensitive my skin is, or whether my stomach is touchy.  I have to evaluate my anxiety level as well – am I okay to deal with a lot of people and noise in a store, or will going there put me on the edge of a panic attack?  I have to consider the weather before I decide to leave the house – too cold/too hot?  Moment by moment autoimmune patients have to make decisions based on how their body has decided to respond to each little event in the day, and we have to adapt and make changes to our plans based on how the day progresses without any way to predict it.  Based on prior experience, we can guess at a framework, but it often changes anyway.  This unpredictable nature of the diseases we face is part of the reason that winning a disability claim can be really difficult.  One day I may seem perfectly fine (and yes, I typically look fine most days like most lupies), and the next I am down for the count and it could last days, weeks, even months.  It could be from too much sun, or too much unregulated activity, or a cold virus, or an allergy.  It could be anything.. and sometimes nothing that we can see.  I have not held a job since 2003 as a result.  I cannot commit to an employer.  They aren’t very understanding when you call up one morning and say you won’t be in, and it might be a couple days… or maybe a couple weeks… or a couple months, you’re not really SURE right now.  Each day is new.  Boy, that is the TRUTH!  I never know what it will bring.

Shopping is a changing adventure.  I might “need” to go to 4 or 5 stores and services.  I might set out to do it, and some days accomplish that… but others, I might have to cut it short and go home after 1 or 2 stops.  I may get home and head straight for a nap because my stomach is upset, or I’m just too tired to continue, or everything hurts too much.  Thankfully with the changes I have made, that does not happen as often as it used to.  That doesn’t mean it never happens.  It is a part of life with autoimmune disease that you have to expect unexpected changes in your day.  The key is not to get mad about it.  It happens.

This is where I am addressing how I choose to view the events of my day.  The reason my Facebook timeline and pages, and my blogs, are not full of complaints about every little ache and disaster is because I consider it the hand I have been dealt in life.  I am not angry about it.  If you read my posting, you know that I have said that I have had Fibromyalgia since very young.  Pain is not new for me, and I don’t have a challenge-free life to look back on wistfully.  That may give me a different perspective than some people have.  I am still not angry about it.  Why be jealous of someone else’s life?  Sure, I would love to drop these issues and know what it’s like to not feel weighed down physically, but it’s not going to magically happen.  So why stew about it?  It makes no more sense than it does for people that jealously rage about others that achieve control, inactive phases of their disease, remission, etc., or criticize others that have a milder case than theirs.  The truth is that often the ones we see as a “milder case” are not spilling all the details of their personal rough patches.  They may not be as “mild” a case as you think they are.  I may be that example.  I’m not hiding anything.  I just don’t feel the need to dwell mentally in horrors.  They exist.  They happen.  We keep on.  I can take a minute to rant about it when I feel the need, but then what?  I prefer finding solutions over wallowing there.  It’s how I manage to thrive, rather than simply survive.  Surviving is only a starting point.


This is how I do NOT see my day: I woke up in so much pain.  Just getting up is going to be difficult.  I don’t feel like eating, but I have to eat.  Nothing is appealing, and what I ate upset my stomach.  I have to go to the store and I feel exhausted.  I just want to go back to bed.  I don’t want to deal with people today, and the thought of it makes me feel like crying and crawling in a corner.  I went to the store, but I felt like punching people by the time I was done.. and now I have to carry everything in from the car and I’m too tired.  I need to eat lunch, but I don’t feel up to making a meal now.  I haven’t worked out today and I know that I need to, but everything hurts too much.  The noise in the store (and someone’s perfume) was so overwhelming that now I have a migraine starting.  The bills need to be paid, and I’m so stressed thinking about it that I don’t know where to start.  The laundry needs done, but I just don’t have the energy to pick anything up.  I need a nap.  I took a nap, and now I’ve lost a couple of hours of my day and nothing else is getting done… and I’m hungry, but I don’t feel like cooking.  My back hurts.  My feet hurt.  I have to take my evening meds.. can’t forget those.  Have to feed the cat.  Have to feed the fish.  The lawn… the garden… they need water, and I so do not feel like it.  There must be a storm rolling in because now I have stabbing nerve pains and I just want it to STOP.  Cooking dinner means washing dishes.. and I don’t feel up to either one.  I’m tired, but I can’t sleep.  I keep waking up… why am I awake again…?


How do I choose view my day?  I woke up.  I am breathing, and I can move.  I may be nauseated, but I have choices in my kitchen and I’m sure I can find something.  Rolling out of bed was hard, but I am thankful for the PT that taught me how to do it correctly and not make my back worse.  I may be too tired to feel like going to the store, but I have enough in the bank to get what I need the most and if I don’t make it to all of my errands, they can wait until tomorrow.  I will do the best that I am able today, and do that again the next.  I didn’t like dealing with crowded stores, and I feel very wound up, but I’m proud of myself for getting through it and looking like a sane person in the process.  Yay me!  I hate carrying bags in from the car, but I got my shoulders repaired 2 yrs ago and I can do it without help now!  I may not feel like working out today but I will try to do a little.  If I REALLY can’t do it today, tomorrow is another chance and that’s okay too.  The store was full of screaming children that hurt my ears and left my hands shaky, but now I am home and it’s quiet here.  I can relax again.  I can be grateful for that – and grateful for having an effective migraine medication if I need it.  I can also deal with the bills one at a time and choose to breathe slowly and control my anxiety about it – what a great skill I’ve learned.  I FEEL scrambled, but I can choose to take my time and sort it out.  My feet hurt so I’ll take my shoes off and put them up for a few minutes.  I have also learned that short breaks are one way to take care of me.  Needing a nap is not a crime.  I let myself do it when I need to.  It’s a healthy choice.  The cat, the fish, and the lawn didn’t die in those 2 hours.  Nerve pains are anything from annoying to awful at times, but I can walk – maybe slower than I wish to, but I can.  There was a time when I could not.  Dinner can be something really simple, as long as I make healthy choices.  That too is okay.  I can’t sleep, or stay asleep sometimes.. but not all the time.  (And you know what?  When I make the choice to see my day on the level of the successes, I rest a lot better.)


I really just touched the surface of my physical issues and discomforts, even in this writing.  Someone once told me when I described how sick I had been as a child, and how often, that they would not want to live that way.  I didn’t want to live that way either, but they really meant they would rather die than have the life I had.  That to me is not only shocking, but rude.  It is as if to say that nothing I endured justified the value of my overall life, or what I may bring to others.  This is also a pointless statement to make to a sick person.  You do not know what you would be able to endure, or how you would face challenges, or how you would feel about it until it is YOU.  My life is hard, but it is still a good life.

Are you building yourself a good foundation, or self-sabotaging?  The power for that is in your hands alone.  We autoimmune patients are not the only challenged people in the history of the planet, and we do not have a corner on the market in suffering.  We have the exact same opportunities to strive for a better quality of life in the midst of adversity as everyone else has always had.  When you hit a rough patch, scream if you need to and get it out of your system.  Cry if you feel like it, and cleanse yourself.  Rant about it to your closest friends that you can share with mutually, and confront the feelings.  When you are done, be done.  Wash your face, take some deep breaths, shake off the anger, and embrace your blessings.  It’s then time to move forward again, at whatever pace you are able.

I go through time frames where I am able to do more.  I take full advantage of them when they come, and it’s not because it is easy for me.  It is because I choose to do it in spite of the effort it requires of me.  You should see how I am when I wake up in my sleeping bag in a campsite after a cold night in the woods.  I don’t move any faster there than I do at home, and in fact it takes me longer.  For these things “can’t” is simply no longer in my vocabulary, and it did once occupy a space.  Doing things differently and more slowly – adapting – is how I managed to accomplish this.  I can accept changes without accepting defeat.

T

31seo08qqdL

 

 

Sometimes it is Lupus


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!

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: