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Dear Doctor…


Dear Doctor,

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.

Signed,
The 1.5 Million Lupus patients in the United States

 

 

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“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

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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

On a Razor’s Edge


Living with an autoimmune disease like Lupus.. is life in the edge of a razor. You walk a fine line of conformity to strict routines, and defined boundaries, and a small deviation can send you sailing right off – painfully. The longer I live with this stupid condition, the more I see that the only people that really understand what that means are the other people directly living it with you. That is not your family, or your spouse, or your healthy friends that say they are there to support you. It is your fellow warriors that are also afflicted. There are a lot of people that will tell you they “understand”. They will say they are supportive. The truth is, they have no idea how to be.

I prefer to write when I have something more inspiring to say. I like sharing my breakthrough moments, and successes.. but right now, at this moment, I feel very low emotionally and I have to put a few thoughts into print. One of the worst things about dealing with loved ones is that you end up spending more time and energy explaining to them what they should already know, and feeling bad (like it’s your fault) about disagreements, conflicts, and perceived disappointments. You feel bad that you have to tell people no. You feel bad that you have to tell yourself no. You feel bad that people don’t understand why any of that is happening. You feel bad that you have to explain it to them again and again. You feel bad that you are facing limitations. You feel bad that you have to pick and choose between not only the things you need to do and want to do, but also between the things you want to do when they are all there is to choose from. We Lupies could have all the money in the world in our hands, and it’s not going to take away the fatigue, the muscles that rebel and quit on us, the nerves that inflict pain and unwanted sensations and movement, or the risks of everything we are exposed to every time we try to go anywhere and socialize. Every move we make has to be a calculated risk assessment. There is no such thing as a spontaneous decision in my life. I can’t just “Hey! Let’s go to the beach today!” anymore. I can’t have a friend calling me up and saying “Let’s go have lunch” without warning, or drop everything and change my plans for a day where I have set aside to take care of matters at home. My reserves are precious, they are small, and I have to save them for the most critical things. When those are done, then I may be able to choose things that I “want” to do for myself otherwise. The next thing that happens on the trailing end of it is… someone placing a demand on your time, and your energy, what little of it is left. There is always someone that thinks they know what is best for you. Always someone that wants to put their own interpretation on the situation. Always someone with their own brand of a good idea. They also rarely want to hear what you really need.

Real life with real disease is boring. It just is. As one writer put it – and I still find this so true, even after 4 years of this – then every once in a while, something truly terrifying happens… I guess it keeps us on our toes, but honestly I’m kind of getting tired of it. Both the boring, and the terrifying are things I could do without for a while. Level would be nice. Not having to manage someone else’s feelings about my situation would be REALLY nice, considering I have enough to deal with managing my own. Hint for anyone living with an autoimmune patient: Don’t put your issues about it off on them. They’re sorting out their own challenges, so you’re going to have to sort yours too. Don’t knock them off of their edge. Don’t disrupt what little balance they’re maintaining. It’s so hard to get back.

My main focus is always telling people they have no expiration date, and they can do more than they are being told is possible.  All of that doesn’t happen without some backing, some support system (which ideally SHOULD be at home first and foremost), and people that don’t create oppositional static for you.  I would love to tell you that the changes I have made, and what I am doing now is easy, but it’s not.  In fact it is more work, harder for me, than it was just being in a state of mental paralysis… not progressing, not improving.  Giving up is easy, and you at least feel initially like you can lie your head down and rest (which is about all you ever think about doing when you have an illness like Lupus).  It accomplishes nothing, but it’s comfortable.  It’s also boring.  Quickly.  I talk about the successes, the positives, the motivation.. but it is because I have to keep my focus there in order to do it.  It’s not easy.  Not one step of this has been easy.

The person that knows best what they need is the one that has a daily war to fight with this disease in their own body.  If you really want to support someone like me, you’ll listen to what we are saying and not try to come up with a fix for everything from your own perspective.

T

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

Walk to End Lupus Now – L.A., CA


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.

http://lupus.donorpages.com/LosAngeles2013/TalaSmith/

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.

New Video Project – I Am That Wolf


Okay so, I’m working on a new video project that may take some time but I believe it will be worth the effort in the long run. It’s taken on a life of it’s own and I am grateful to the members of the Lupus community that are stepping up to participate. I believe that it is our responsibility to not just show the world the “ugly side of Lupus”, because anyone can do that with snapshots of rashes and hospital stays.. and really, our job isn’t to horrify the public. If you have it, you know it’s awful at times. If you have a loved one that has it, you have some clue to that as well. It takes seconds to inform someone that it’s a destructive disease. If that’s ALL you do, then all you have done is create sadness and quite possibly.. pity.

What I think many people miss is our adaptability, our strengths, and our spirit. So do you want to be the object of “I feel sorry for you”, or do you want people to say, “Omg… that’s amazing”? I have that reaction to my inspiration, Montel Williams. Amazing. He doesn’t invoke a “sorry for you” response because he’s determined and productive. If I ever let go of that motivation myself, someone slap me, please. I hit rock bottom in 2006 and I really don’t want to ever go back there again. So this project is about both sides of the coin, but very definitely highlights our capabilities. We live with pain, we manage it, we live around it… but it doesn’t define who we are or own us. That’s the message I am after. I hope that if you’re reading this, you will check back to see what it’s about when we’re done. In the mean time there will be other little things uploaded. Thanks for looking in.

http://www.youtube.com/user/TalaSmith/videos

Tala

Tala’s Story


I have several videos up in You Tube now.  Some are walks in forests for those that may not be able to get out but want to see a few trails.  One is a compilation of my stills set to music.  This is the latest, and it’s my personal story about Lupus, diagnosis, and continuing to have a life.

http://www.youtube.com/watch?v=Ztuneg564DY

 

Good Things Come to Those That Wait


Sometimes it only takes a little thing to give encouragement.

Sometimes it’s direct, and sometimes it’s a joy for another person in your life. Other times it may be things that creep up when you’re not looking. We usually think of the negatives in that context, but even a good event can slink in when you least expect it. It’s easy to feel so buried that you don’t even notice right away.

I still feel overwhelmed. I still feel “stuck” in many ways. A moment or two of encouragement however lightened the load a bit.

First, I went to log into an email that I don’t check very often – the one used for my online store. There I discovered that on November 11 someone decided that my artwork was worth paying for, and I had my first sale. It’s not much, and the royalty is small, but it doesn’t matter. It’s been so many years since I sold any of my artwork that I’m ecstatic about it. The fact that anyone felt it was worth their hard-earned dollars is enough for me.

Then when I woke up this morning and reached for my glasses, I had another realization. My hands felt stiff so I automatically went into a careful paw-like grasp by habit. When I did, I realized that it was completely unnecessary. My fingers are stiff, true enough, but I can FEEL them and was able to grasp small objects without fearing I’d drop them. This problem has been plaguing me for many months on a regular basis, and happened periodically in years prior, during flares. Stress seems to make it worse. I’m under tremendous stress right now, and yet… I don’t seem to have had an episode with it in at least 3 weeks. That tells me one very important and simple thing.

The Plaquenil is working.

I have had some reduction in pain level. A lot of it we attributed to the Medrol, and I’ve been tapering off of it for a while now. I’m down to 1mg a day, so I know it’s not the steroids at this point. I never was looking for a perfect solution or magic pill that made all the symptoms go completely away. I don’t expect that but I did want some control back, and the ability to function closer to normal. I think I’m getting that. There are still good and bad days… and the fatigue is still a looming factor. It’s still an improvement though, and I’ll take it. Now if I can just pull the money together to see the new Dr. ;-)

____________________________________________________________

I’ve been sick – down with a cold. One of the scariest things that happens while you’re immunosuppressed. So I’ve had no head for writing at all for about 3 weeks, or I’d have been back up here sooner. Thankfully, I’ll be completely off the Medrol soon. Hopefully, I won’t need again any time soon. Those of you that still check in here, even when I haven’t added anything new, I really do appreciate it. I can see that there has been some activity. Thank you.

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