Category Archives: Things That Make You Go… AAAaaaauuuggghhh!!!

Warning: I may vent here. I cannot be held responsible for anyone bursting into flames spontaneously.

FIBROMYALGIA SYNDROME is Not a Fashionable Label


Stop telling people that you “think” Fibromyalgia is a symptom of something, or a “catch-all” label for something that can’t be otherwise identified.  If you are a public speaker, or have any kind of a public following, you are not helping us by doing that.  If you are not a physician educated on the topic, or a patient living with this SYNDROME, just stop.  It has taken many, many years, and a lot of blood, sweat, and tears, to finally be taken seriously by the medical community and even a portion of the public, and it is a very definite individual diagnosis even qualifying as a stand-alone application for disability!  Quit trying to drag us backwards.

Educating yourself on this topic is not all that difficult these days.  This is not about conjecture and philosophizing about the causes of it.  You can speculate all day long about why you think it happens to *some* people but that does not make it any less legitimate, nor does it invalidate the diagnosis and make something unworthy of proper medical recognition.  It is a neurological condition.  Some choose to use medication to manage it, and some of us choose to stick with natural means, but it does require management and treatment either way.

When someone with a public following makes a proclamation that they think something like FMS is some kind of emotional issue, it only makes life more difficult for those of us trying to manage it in our lives.  You are validating completely uneducated and critical friends and family of ours and creating more problems that we don’t need.  Do us a favor and just don’t try to speak on the topic if you can’t be bothered to catch up with current info.  I am not advocating for anyone to not deal with emotional damage if they have it.  Please just do not label Fibromyalgia as being solely an outcropping from something like that.  The two issues are distinctly individual, and can exist independent of the other.  Even if some traumatic event was the trigger that set it in motion, mending emotional pain is not a guarantee to end the manifestation of the syndrome.  It shows up quite often in autoimmune patients for a reason.  Nobody has figured that out yet but it IS on the suspected list for being autoimmune itself.  Stop making our work harder for us.

T

Advertisements

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

 

 

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


I’ve been mulling over how to address this very directly for a few weeks now.  As I am watching friends go through the same questions that I have faced in the past, I think it’s time to spell some things out.  If you have a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia and Dysautonomia… I don’t say something like this often but I am BEGGING YOU to take the time to read this blog entry.  If you truly care about that person, take a few minutes out of this one day and inform yourself about what their day will be like today.  PLEASE.

I want to encapsulate as much pertinent information as I can here.  It does however require some insights that may be foreign to the average healthy individual.  I cannot ask you to put yourselves in our shoes, because you’ve never been in them.  You can only use your imagination and then from there take our word for it about the things that you have not fully experienced.  I will also add that I genuinely hope that everyone reading this that has not experienced one of these conditions NEVER DOES, and I mean that.  I literally would not wish my life on my worst enemy (and I have some people out there that I can actually say that I hate.. as strong of a word as that is.)

I have written before what my day is like from the time I wake up and the tedium that goes into each move and decision.  I won’t detail it the same way again, because it’s already been done.  I will shorten it here by saying that as a Lupus and Fibromyalgia patient, with autonomic dysfunction and other comorbid conditions, every single finite detail has to be approached for what it is singularly, when a healthy individual can execute several in one smooth motion.  I don’t open my eyes immediately.  I don’t sit up suddenly.  I don’t hop out of bed and walk anywhere without first sitting up for a minute to see how I feel, then stopping again once I am on my feet for the same reason – before taking one step.  Imagine your whole day having to be analyzed that way whenever there is a change in activity, venue, or position.  If I have been in the chair at my desk for more than a few minutes, when I stand up I have to be careful.  My blood pressure drops 20 to 30 points (medically documented) and people with that condition are at risk for passing out.  It’s called Orthostatic Hypotension, and happens with something called Postural Orthostatic Tachycardia Syndrome (POTS) which is a Dysautonomia condition.  This is Dysautonomia Awareness Month, by the way.  You might want to take the time to look that up and learn a little.  It is neurological, and incurable – just like the other diseases I’ve mentioned.  They can all only be treated and managed, and most of them are progressive.  At the very least, some of them cause progressive symptomatic manifestation, even if they don’t cause direct damage to the patient’s body.  The stress caused by lack of sleep, lack of REM sleep, difficulty absorbing nutrients, adrenal exhaustion, cardiac strain, dehydration, constant firing in the central nervous system, and more than I could possibly name here has a deleterious effect on you.  It’s debilitating, even when the disease itself is not considered progressive and debilitating (as with Fibromyalgia).  The human body can only endure so much strain over time.  Things begin to break down.  Other diseases and damage creep in. In the case of something like Lupus, internal organs take damage during flares because the immune system is attacking healthy tissues in every possible system in the body.  You cannot predict where it will attack either.  Sometimes it takes time to find the problem and try to get it under control.  This is why some Lupus patients end up needing chemotherapy as a treatment.  Their immune system is so over-active and out of control that it has to be severely suppressed.  That’s to keep us from… you know… dying.  People die from the complications of Lupus every day.  It’s that blunt.

Now that I’ve explained the basics of the diseases… here is why it is disabling enough to stop a lot of us from holding employment.  Let me first say that I applaud anyone that is able to work, and I hope you continue for a long time.  Your strength is admirable and I’m happy that you have your conditions managed well enough to allow it.  For our healthy friends, we’ll address what happens with those of us that can’t, when we can’t.  One preface: This is variable for some people.  Sometimes a patient is able to go back to work and continue for a while, and then they crash again.  Sometimes it’s temporary and sometimes it’s not.  Autoimmune patients tend to be overachievers, people that started working young and were driven to continue for many years without a break.  People that started college young.  Women that excelled in fields that are primarily male-dominated.  Many were athletes.  We tend to go until we drop.  When that happens, it’s a hard crash.  We tend to ignore pain and fatigue because it’s just in our nature to do so.. but when you ignore your body’s signals, it can cause a lot of damage.  Most especially in the case of a disease that is as destructive as Systemic Lupus and it’s friends.  To be clear, there is no way to mediate how this disease will eventually manifest to any sufficient degree.  It absolutely IS progressive, even when caught early and treated early.  The only thing you can do with a medication like Plaquenil (what I take) is slow it down, and how much you slow it down depends on the individual – things out of our control entirely, like genetics, environmental exposures, the weather, and the randomness of the disease itself.  We only have control over a few things and I encourage other patients every single day to do what they are able, from eating right to exercise and reducing stress where they can.  That’s important for regaining and maintaining quality of life.  It is not however a stop sign for Lupus.  We’re all on a timer that we have some input for but no real control over.  It’s also… just that blunt.  Those of us that have the disease are fully aware of it even when we don’t discuss it openly.  We are trying to enjoy the years we have with as best quality as we can get without dwelling on the future decline we may face.

To interject before anyone thinks it, this is not the same as the normal decline of age in a healthy individual.  We face all of the things that you will but sometimes 20 to 30 years earlier than we should, and more of them together than the average healthy individual.  It’s a storm and it arrives too soon.  Please don’t try to compare it to your normal aging experience.  If you already had your healthy youth, then you don’t know what it’s like to miss out on that.

Just as a side thought… When our acquaintances keep asking intrusive questions about WHY can’t you do this, or WHY can’t you do that, it makes us have to stop and think about the negatives a bit too much.  I don’t mind people asking questions about my illness and I am an open book.  My entire world however is about awareness and advocacy.  This IS my job, along with taking care of me so that I can stay functional enough to create the awareness videos and other projects.  I have committed to that alone because I am able to do that.  I do it for everyone that cannot.  Some people can’t do what I do, and all they can do is try to manage their symptoms and the progression of their illness in silence.  Don’t push them too hard.  They may be more fragile than you realize.  Words hurt.  Disbelief HURTS.  Badgering in areas where you do not understand the reasons and circumstances is not helpful to anyone and it seriously just makes you look like an ass.  I can’t say it any other way.  If that sounds offensive, consider it a dish back out for the offenses dished out onto us.  Even if you are someone that believes in “tough love” (and I personally do, for the record), it’s not your place to chastise someone that is already fighting to survive and to keep their head above water.  Unless you have actually taken the time to be an intimate part of their support system, and you have earned to be entrusted with the details of what their day is like, you honestly have no idea what you are talking about.  I hate to be so exclusive, but I am being frank for a reason.  I have seen too many friends being harassed and hurt by people that think they mean well.

I am not able to hold a job.  If I dressed myself up and went for an interview right now, I could make myself appear qualified (other than a really out of date resume’) and lie to an employer about being reliable.  I would have to lie, because I am not reliable.  The question has got to be in a lot of people’s minds as to why I can hike, camp, and do other outdoor sports, and have this big project for Half Dome planned, but I can’t hold a job.  This is why I started the video series this year on my YouTube channel called “The Price We Pay”.  I can do it, on my own schedule, in the timing that my body allows, and then I pay for it later.  Up until this year, I wasn’t sharing the aftermath.  I was only showing the accomplishments to encourage others.  I realized they were missing something vital about my process and not getting the full picture, and I realized that had to change.  An employer isn’t going to accept you calling up one morning and saying that you can’t be in today, maybe not tomorrow or the next few days, but you’re not really sure… and it could be a few weeks or months, can’t say.  That is the reality of Autoimmune Diseases in particular, and several neurological conditions as well.  I happen to have some of each – that’s a common problem.  We all see wealthy celebrities “forging ahead” and continuing to work as well, and they are probably spending a ton of money on the very best treatments so they can stay on their feet longer, but I guarantee you they are crashing later too.  You just don’t SEE it happen.  I am willing to show the world my pain afterwards, but not everyone has the emotional strength to be that honest either.  Understand that on my own schedule, I can cancel a plan or activity without notice.  It affects no one but me.  I can decide that even though last night I thought I was going to get up early and hike, today I just can’t.  I do that on a regular basis.  Not everyone knows about that part;  it’s not important to announce.  I can also guarantee you that anyone else that you know with one of these diseases is doing the exact same thing.  Again… an employer cannot accommodate that.  They will not.  There are a few cases where someone manages to get a work-at-home situation but it’s not terribly common.  It usually requires some specialized experience or skill too, or having had the job in a location for a time first.  Some people are also not equipped to meet the deadlines those type of jobs require.  They may be too dysfunctional even at home to be reliable there.


There is a well-known set of statements that all of us in the rheumatic autoimmune community have seen and heard repetitively.

One of them goes like this: My friend so-and-so has that and they work full time. 

Another: My aunt had that and she took aspirin and got on with her life. She was just fine.

Also: I have back pain too but I have to get things done and I power through it.


Stop telling us that life is hard.  We are fully aware of that, and in fact we empathize with whatever aches and pains anyone on the planet has had to endure – probably more than you are capable of understanding, in reality.  Some of us (not me) started off with normal, healthy lives, and had many years of activity and athleticism, and great memories that are now haunting us.  Personally, I was born not quite right.  I’ve had chronic pain since childhood and I have no idea what it’s like to have a totally pain-free day.  Chew on that concept for a few minutes.  You still want to be me?  Do you still want all of my “spare time” to enjoy what I endure?  I doubt it.  I have moments where I am having fun like anyone else.  You really do not want what goes with the copious “spare time” though.  Trust me.

If you have never read The Spoon Theory, please look it up.  It’s a great analogy that explains how our energy is limited for everything we have to get done in a day, even ordinary things that everyone does.  It’s written by Christine Miserandino and a copy can be found on the Lupus Foundation of America’s website. 

I wish there were a way to adequately describe to a healthy person, or someone with the usual and common health conditions that happen to many and come with age… the depth of what it is like to have an immune system that is literally trying to KILL YOU.  If you’ve seen someone say that and dismissed it, you need to understand that it is not being stated merely as an expression.. like when someone says “My feet are killing me.”  No.  I mean KILL YOU.  Dead.  Your immune system is supposed to protect you.  It’s a ready and armed military unit, and when it goes haywire like ours has, it will look for anything to attack.  Your eyesight.  Your heart (like me).  Your kidneys.  Your muscles (me).  Your connective tissues (most of us).  Your central nervous system (I have that too).  Your skin.  Your reproductive organs. Your teeth and gums. Your bones.  Your hair.  Everything is subject to attack.  I’ve lost about 40% of the hair I used to have, maybe more.  That’s “just” an emotional impact but I still feel it.  That started before I was even 30 yrs old.  Sometimes, some days, there is so much pain and fatigue that you can’t tell where it is all coming from.  It’s just everywhere.  Others maybe it’s one or two joints, but something still hurts.  When you have neurological involvement, along with the random stabs that feel like someone is sticking you with an ice pick, you’re simply so depleted that your muscles won’t respond as needed.  I can go from one day working with weights at the gym to the next day unable to crack the seal on a new water bottle.  There is no way to predict these changes.  How does one plan a life around that?  We can’t make firm plans for anything.  Don’t anyone dare try to tell me that life is random, and no one is assured of things going perfectly one day to the next.  I am totally aware of that too.  You however, as a healthy individual, can go to bed at night with relative certainty that when you wake up tomorrow your body will be as functional as it was when you went to lie down.  Most of the time, there won’t be any significant changes in the night.  For us… that is never, EVER true.  Every single day is faced as a new slate with unknown factors that could be good surprises, or a month-long horror show.

This is the one reason it is so important for an autoimmune patient to learn to embrace moments and love every second of the ones that work out right.  This is why some of us reach hard to do the occasional off the wall thing like a tandem skydive, or a trip that is offered to us, or any experience that we’ve long dreamt about.  It’s almost a requirement for us to have a bucket list because it gives us reasons to keep breathing at times.  Not every disability is visible.  Having a disability also does not require us to hole up in the house, look miserable, and cut off all social contacts like we aren’t fit for humanity.  Yet… we always, always have people looking sideways at us if we even dare to crack a smile or laugh at a joke.  God forbid one of us goes out for an ice cream cone, or sees a movie, because we are expected to not have a life at all.  We are not allowed to enjoy anything and talk about it because the second that we do, someone is there asking well if you can do that, why can’t you do THIS?  If I am on my own time, and I am in control of saying when I have to stop, possibly go home, probably lie down, then you can darn well shut your mouth about what I do with my “spare time”.  Having gone through the agony that I did in 2006 when I couldn’t even stand up under my own power, if I find enjoyment in something I am going to do it!  Your approval is neither required nor desired.

If a cancer patient had wishes, people would stand up and cheer them on.  They would say how sweet it was of people to provide them opportunities, and how brave they are for still participating in life.  Autoimmune and neuro patients though?  If we take one step out the door for anything other than a Dr appointment, suddenly there must be “nothing wrong with us”, and we can’t possibly be that sick.  ARE YOU SERIOUS WITH THAT?  Get out of here.  If that’s how you think of me or any of my friends then get off my blog, get off my social media, unfriend me, and don’t ever talk to me again!  I am done.  If anyone wants me to choose, here it is.  Those that have been there for me through the worst, and cheered me on both through that and the best… those that have proven they are trustworthy, honorable, sincere, and genuinely loving friends are deeply appreciated.  You will go with me all the way to Half Dome, and more.  I love you for that.  Anyone that thinks any of us are faking it, milking it, or making more of it than it is, BYE.  Either get educated and get with the program or GTFO.  NO MORE ABUSE.

Be a grown-up.  Realize that you don’t know everything about someone else’s life.  Try asking and listening instead of talking and assuming.  It develops character.

T

10686815_316323431885041_7335455495085544114_n

You Were Fine a Minute Ago…


Tala's Tracks

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

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

View original post 1,584 more words

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

At Least I Am Free


Over and over I have said that what I am doing is not easy.  It is the hardest path I have chosen in my life, and every day is tremendous work, start to finish.  Some days my impression is that very few people understand what that means .  Hard paths are the best and most rewarding ones in life.

From childhood I have been an individual of deep thought and emotion.  There are things with which I connect in ways that I cannot put into adequate words.  Most of these are found in nature, whether it is adventure or beauty, and if the two are combined then all the better.  It has never been in my nature to just disconnect from emotions, however I did determine a long time ago that if I do not do the work necessary to manage it, then it will be my undoing.  There are times when that does not set well with others, and they do not understand why I am not being soft and sympathetic.  They may think I am being cold when in reality I could be raging inside, usually because I want to scream for them to do something proactive to rescue themselves.  Do you really not think I have been in your shoes?  My case of Lupus might look mild to anyone just meeting me today (or anyone not paying attention).  My true friends that have been there from day one, and made themselves trustworthy for my confidences, can tell you otherwise.  I can accurately say that NONE of you were there when I couldn’t even stand up off the floor for months on end.  That was before the support groups entirely.  I went through that alone.  It is part of what has made me the individual that I am today.  Where do you think I built my foundation?  At rock bottom, baby.

That ugly place I left behind.. the one full of agony, Vicodin, muscle relaxers, and despair… it’s been behind me since 2007.  It was not however until two years ago that I really shook free of it and started to climb the rest of the way out.  I know people that have never hit their rock bottom (though they may believe they have), and I know people that hit it and set up camp, and I even know a few that like me they stopped halfway up the ladder to enjoy the moderate reprieve.  It’s still dark in there, and you don’t have to stick around.  I am speaking metaphorically and I do that a lot.  If it doesn’t apply to you, skip it. If your world is really dark.. then it probably applies.

Pain is inevitable.  Sooner or later it touches all of us.  Suffering is optional.  I am going to keep repeating it until someone else gets it – and then some more until someone else does.  If there are no military or good Veterans in your life, maybe you need to make friends with some.  You can learn a lot from them, and I guarantee they will loyally be there to help you through the lessons.  They’ve taken on the responsibility at it’s grittiest level to let themselves be torn down, rebuilt, molded, and perfected into beautiful strengths that only the most disciplined training can bring out of a human person.  Professional athletes have to call on the same internal fire, and chose to drive themselves to new achievement for the intangible rewards it brings.  We all have that choice, no matter what our level of capability is.  We just have to choose to tap into it.

I grew up hearing the irritating words “the truth hurts” far too often.  The philosophy was (I believe) abused.  The truth is that the truth HEALS.  It’s just that not everyone appreciates the mending process, and some are unwilling to accept that parts of it can be unpleasant, uncomfortable, distasteful, and even painful at times.  Look at surgery as an example.  Damage has to be inflicted in order to correct and repair, but it is sometimes necessary and when it is necessary then it is the right choice.  Maybe something needs to be surgically removed from your inner workings, metaphorically speaking.  When you hear a “cutting” truth, you react to it, and many chose to react negatively rather than to consider what is being presented.  I’m sorry but I don’t have any anesthetic to present people when I am sharing concepts, and while I can mince words by choice, I tend to believe that for some people it dulls the message too much.  Even in medical procedures, sometimes it just can’t be done that way.  If you’re asleep when this message hits you, you’re not going to hear it.  This is a wake-up call.

There is not a morning that I wake up and automatically want to get my shoes on and go for a jog.  I have to stretch and move slow, and consider the messages my body is sending me.  I have to converse with myself about what I want to do, what I am up to doing, what I need to push through, and what benefits and risks there are.  This is after four years of treatment, the latter two including a fitness routine, two major surgeries in the midst, and a complete dietary overhaul for the last year.  I will ALWAYS have to be circumspect with every move I make, every activity that I undertake, and every morsel that I consume.  I committed to it because I decided that my life and living it was important to me – that I did not want to spend it miserable.  This starts on the inside, dear ones.  It is a decision.  You cannot manifest a reality without first imagining it.  There are days when I want to roll over and cry and go back to sleep.  If I want the things that I desire to manifest, I do not have that luxury.  This is MY choice about my own life.

Where there seems to be a problem is the reaction others have to cutting truths.  If it’s not for you, then it’s not for you, but you don’t have to get upset about it in that case.  Something unimportant in your world is a thing that you can walk by without a thought.  If you reacted to it, maybe that’s what you need to be examining instead of getting upset at me or anyone else.  When I share what I am doing, it is because I love other people enough to not want them to unnecessarily suffer.  At no point have I presented anything as a cure-all for disease, but I do guarantee that you will see changes if you do the work.  If you’re not willing to do that, then just admit it and drive on brothers and sisters.  The hard fact is this… until you actually do what I have done, and make the sacrifices, the hard choices, discipline yourself, say no to “wants”, and stay consistent with it at length, then you cannot rightfully criticize those of us that are living proof of what can be done.  You can’t have it both ways.  Either admit you don’t want to do it, and accept where you are at, or make every effort that you can drag from the depths of your soul and give yourself a righteous voice with which to speak.   If there were no successes, I would not share suggestions.  I would not share the words of others that I admire, if I saw them to be hollow and unfounded.  It is a basic truth that we are all individuals, and a disease like Lupus affects us all differently, but it does not discount the basic truths of how the human body functions.  I promise you that 100% of the time how you treat your body will affect your outcome.  You may not think it is enough, or significant, but it is still the truth.  You are the one that decides whether it is worth the effort or not.  It’s up to you.

There are people that I find quite inspiring to watch.  Some of them are like me, and they have catastrophic illness to manage.  Others are disabled physically in an obvious way, either missing limbs or unable to use them.  Others still are amazingly fit and blessed, but they have been through horrific injuries that would make an ordinary person want to give up.  Virtually all have been told NOT to do things, or that they would not be able to anymore, and they chose not to accept that prognosis.  In the end, each of them has made the same choices that I did… that I continue to make.  Life.  Motion.  Desire.  Joy.  Passion.  Fire.  Get some.  Or don’t.  Just don’t get mad at those of us that do.  In embracing that you will be free.

It may be time soon for me to make a new video – one of me just talking to you about where I am at.  Sometimes that reaches people better than plain text.  You have not yet seen the changes that have taken place.  I am living proof of what can be done.  I am also completely sincere about wanting to help others.  Truth.

T

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

News Flash


Not everyone is going to have the same views on everything all the time. In fact, I dare you to try to find one friend, lover, or relative with whom you never disagree, ever. That kind of a “perfect” match doesn’t exist anywhere in life, and I wouldn’t consider it truly “perfect” if it did. Differences between individuals is what makes life what it is – colorful.

Where some people get lost is in thinking that a difference means being oppositional. I have said this before, and will keep saying it, but I am always amazed that anyone is afraid to discuss things related to politics and religion. Why? Are you afraid that having a different view than someone else will make one of you implode? It’s not acceptable to share ideas and simply respect the other person having a different experience or take on it? It’s really interesting that some people take a more passive-aggressive path on this, and rather than simply state “this is how I feel”, they would rather become irritated and then fall silent. Silence speaks volumes, my friends, and not all of it is nice. If I am simply presenting what I see in something, or sharing what my experience with it has been, why is that offensive to someone with a different experience? Why can people not just accept it for what it is and stay friendly?

I’ll give you an example. I don’t approve of recreational use of marijuana (or tobacco, for that matter). Marijuana has medical applications, and tobacco is ceremonial in my culture. That said, I don’t hiss at people when they light up a cigarette, and I don’t hunt for recreational tokers to insult. I am capable of expressing how I feel about it, living MY life according to it, and letting others do as they do. If it harm none. I’m not going to tell someone it’s okay to drive drunk, because obviously that endangers them and others. Common sense. Interestingly enough however… many that defend recreational use are really very pissy about it. I don’t have a better word, sorry. If you feel you are in the right, then why are you so defensive about it? Why do you have to loudly, repeatedly declare that you disagree? Just say how you view it in a normal tone without the agitation already. That’s not difficult. I run into this over and over on various topics. To me it is disheartening. I enjoy the few friends I have that can converse without condemnation, but they are very few. In most cases I have also found that they never bothered to consider the reasons behind my views on any one thing. There is a perspective they are missing, and unable to hear it.. perhaps colored by their own experiences but none the less it is a blind spot. Once you’ve thrown up a wall of thorns about it, then I am not able to say anything else. I think there is a misconception that being open-minded on a topic means you are willing to change your beliefs. It doesn’t. It just means accept the other person’s experience as their own without judging it. There are more things in heaven and earth than any one person can know. Life is about exploring them.

Some things are personal choices. You never know why an individual is living their life the way they are, not really. You can’t be inside their head. Cultures have important nuances as well. If you’re kind and accepting, they might just share a piece of it with you though. When I see that I can trust someone, I sure try to. I also get burned a lot when people hit some point where they realize there is something unexpected in the picture. A real friendship however… is one where those unexpected things we learn about someone don’t matter. It has to be a two-way street. Differing views don’t erase the rest of the foundation in any relationship. If you never had a varied thought from the people you talk to daily, you would have nothing to discuss. That is the very definition of boring and pointless.

Gender Bashing, Really?


Here I am again on the topic of gender bashing. I know I’ve talked about this in the past, and it doesn’t bother me any less today than it ever has. The graceless words that for some seem to just roll off the cuff are in fact more and more offensive each time I see them. It’s really unattractive.

I am really disgusted at times at the double standard. In online groups that tend to end up with a member base consisting of more females than males, it seems to become the norm to make remarks about “MEN” in a blanket generalization that no one would tolerate in the reverse. Then if challenged, the posting individual either becomes indignant that you would dare to disagree, or they try to pass it off as a joke while painting you in a bad light for taking their remark seriously. “It was *just* a joke” doesn’t cut it with me, and it never did. You weren’t laughing, and neither was anyone else, and trying to backpedal with smileys and hahas doesn’t make that nasty comment any less rude retroactively. If you hate men, at least be honest enough to just admit that you have a personal problem and say that you hate men. Stop being passive-aggressive and smarmy about it and own your words. There is a lot of cowardice behind all of that, as well as inappropriate rage. An entire gender is not responsible for your issues. Get help.

Let me talk about the flipside that the man-hating populace wouldn’t tolerate. How would you like it if a man posted in such a group that all women are PMSing bitches? Would that agree with you? Is that kind of a generalization fair turnabout? No? Then mind your words about men, because no human person is created the same. Snowflakes, each and every last one of us. We all have beauties, and we all have flaws. We have our gifts and we have our unpleasant sides. Glass houses… throwing stones… sound familiar to anyone?

In tandem with this baggage comes an obsessive need to ruminate publically over the evils perpetrated on them. We have all seen it. I might suggest that while you can privately vent to your girlfriends, ladies.. and you should have one or two that you can be completely open about FEELINGS with when you’re chatting PRIVATELY, a public venue is not a good place to show your ass and be angry and insulting to the thousands and millions of others that belong to said gender.. just because you had a bad experience or ten. If it’s been 5 years… 15 years… 25 years… it’s time to move on from the incident. While you do carry scars, and it’s okay to be real with people about pains inflicted and how it affected your life, it’s not okay to wallow and wail continuously. No one even knows what to do with that. Their response is to post hearts and I’m sorry comments when they’re really sitting there thinking… WOW… Uhmmm…. Angry ain’t pretty, girls! Pick yourself up, dust yourself off, and take care of you. All that rage will literally kill your body if you keep dragging it around.

I’m not one to say that positive thinking fixes every ill in your life, whether physically or emotionally/mentally. I will tell you that it does have a very upward and healing effect though, and you can’t even buy that in a store. If you are choosing intentionally to make yourself sick with negative energy, more power to you and let me know how that works out. I will be over here sipping on my coconut water, listening to some birds, and remembering that I woke up today and I am still breathing. Everybody has pain in life, and everybody dies – nobody gets out alive. Birth is a death sentence. It’s what happens between those two events that matters. What do you want to be remembered by? Anger. Peaceful demeanor. Grief. Acceptance. Giving in to destructive behaviors. Being motivated to create change. There are a lot of choices here. By my age, I’ve figured out which ones work the best. Are you there yet?

Let me add here… men develop Lupus too. I believe that the statistics are skewed because they respond differently to illness. They are more likely to keep working, ignore pain, try to work through it, and avoid the Dr. When they do go, they prefer a quick fix, gimme a pill and get me outta here solution. They also don’t ask as many questions about what the problem is. When they do finally end up forced to stop, they are suffering so badly that the illness has taken over. This is why men are seen as being affected more severely by the disease than are women. We seek help sooner. We root for more answers. Consider that the next time you’re calling a man names for complaining that he is ill. They may be hurting far worse than you could possibly understand. They’re not going to tell YOU how bad it is, especially if they’ve heard criticism before. This society expects them to butch up and tolerate discomforts. Imagine yourself in those shoes for one moment. Now reevaluate your harsh responses and think how YOU wish to be spoken to, and about. Support groups are not a place to injure other members. They are a place to be kind and sensitive to the other human beings reading our words. You don’t have to paste hearts and flowers, and respond to every post with soft hugs to be helpful. Just try not going out of your way to be ugly.

A little addendum… anyone freaking out and thinking this is directed at them needs to take a step back. I have been in support groups for over 3 years now and this is a cumulative observation of events over that time period. So before anyone takes it personally, they should consider that the world is bigger than one or two individuals. What I am addressing happens just about everywhere on the web.

What Defines Us


I hope that my friends and family will take a few minutes to read this. I have a few important sentiments to relate to the people I love, and the people that I like but maybe don’t know that well yet too. ;-) It has come to my attention that for many people the word “awareness” can be an emotional hot button, and I have always had a goal to change the face of such campaigns. I just want to share some realistic views about who I am and what motivates me. I do not consider myself to be defined by my illness. If I allowed that, no one would ever see me out of the house. I know people that live that way. I can’t do that.

Right at the top I want to state that Lupus is not the only thing I am interested in talking about. Right this minute, I am talking about it more because it is Lupus Awareness Month. This is our time to work harder and get information out there and attention for the LFA, and it is important because we need funds to research, and we need support. Because of that, I put a 2 or 3 things a day on my profile – give or take – to that end. If it bothers you, unsubscribe. I wish you wouldn’t, but it’s your choice. To those that have been supportive and good listeners, and unafraid to discuss it with me, I bow humbly and thank you. To those that seem afraid to ask me questions… STOP IT. I am open about it for a reason, and I am not afraid to talk about it or answer any serious questions. To follow that up however, I must point out that I have always had very real interests that haven’t gone away. I love the outdoors and have camped and hiked since I was a child, and I have studied wildlife and conservation. I even had my yard set up as a wildlife habitat when I lived in Banning, and documented the great variety of species that visited and lived on my property. There is a lot more in Southern CA than many people even realize. I love to swim. I have been a dancer, though I had to take a step back from it for a long time now. I have a singing voice, and used to go to Karaoke with my parents every week when we lived close enough together for it. I am an artist – I work with pencil and water color mostly. I am a traditional crafter (Cherokee nation), so I do beadwork as well when I can. I am also an Intertribal dancer – Southern Cloth, and a Stompdancer. I have studied herbal/natural medicine, nutritional health, pathology, medical terminology, and a smattering of other things. Those are the things that define me, along with my experiences in life. The illness is something that I carry, and live with, and help others deal with as much as I can by running support networks. It is something that I work hard for awareness about because many people need it. It does not however define the person that I am today.

I am very pro on not living your life from a recliner or your bed unless you’re totally incapacitated to an inability to get out of it. Many years ago I remember Richard Simmons telling people that were severely overweight and struggling, to do whatever you are able to do where you are at. He said if all you can do is raise your arms, then raise your arms. At my lowest point in 2006, when I lost half a year to what was then an unknown ailment, I was unable to walk. I couldn’t stand up for more than a few seconds at a time. What pulled me out of the mental state that I sunk to after months on end of this was that statement… Do what you are able to do. It took a lot for me to back out of the medication cycle and find a way to manage the pain and recover. I have slipped back into that severe pain over, and over, and over since about 2001, and it is what keeps me from seeing people sometimes. When it happens, I can barely walk even in my house. It does not however take me down mentally anymore, because I know that when the flare ends the pain will subside as well.. and I can go back to a semi-normal routine again. It is not an end-point for me. It is not “where I live”. I live with it, but it’s not who I am. I try to convey to other Lupus patients that there is always hope, and it is not reserved for the hope for a cure. Hope is about each day, moment by moment, and taking advantage of each one that is such a gift. It’s about sharing your time and energy with people that you love, and savoring it.

I am reluctant to convey certain lines of thinking. I see some posts by other Lupies that are angry. Although I understand why, I can’t allow that in my life. They feel slighted by both their disease and the way they are treated by others, but to hold onto that rage will only eat them up. Ignorance is curable, after all. So the angry posts about not judging me, and you haven’t walked in my shoes, won’t come from me. I have even seen some wishing that others could experience what they are going through, and I am horrified at the thought. I literally would not wish this on my worst enemies. No. There is no point. Instead, I would rather focus on curing ignorance and helping myself walk through my days the best way that I can.

Being an activist of any sort comes with pitfalls. This thing of people being afraid to talk to you is just one of them. Another is that every time someone finds out you have Lupus, and they don’t know much about it, you end up having to explain to them that it’s not contagious. It’s genetic. Then invariably someone eventually asks you if it’s terminal. There is no short answer for that. Let me just say that birth is a death sentence. We all die. Some know better what will be their end, or maybe even some idea of when.. but we all die. Do I believe that eventually some complication of this disease will be my end? Not really. I believe that something will, but I don’t have a clue what – or when. Heck, it could be my heart one day. It’s already damaged and that could be because of the Lupus, or it could be something else. They don’t know. It could be a Mack truck. I don’t know! (I’m smiling wryly here.) No one knows. Even if you get a terminal diagnosis, you don’t know if it could end up something else before it gets to that point. We are all on mysterious paths in life. That said, my illness is fairly well managed now. I fought for that, and I fought hard. I will simply continue to do that because it is a part of my own path. It’s that simple.

I may write a descriptive soon of what my day is like. Not today. Today I simply want to say to my loved ones of many backgrounds that I appreciate those that have stood by me over the years in their individual ways. I want to say thank you to those that have taken the time to actually ask me about this “Spoon Theory” I mentioned. Your attentiveness is precious to me. Your genuine interest has been heart-warming. Believe me, it is not that common.

A few have chosen to make their own stories into their own reality. It makes me sad, but I have to move on from it. A few have decided that they know all about me and my life, and they may have read a paragraph and thought themselves well-educated. In some cases, I have been left in the dark for years as to what the problem is between us. It makes me sad to lose what I thought were friends, but I cannot change what another chooses to believe. All I ask of people is to talk to me when they have a question. Don’t engage in idle gossip and presumptions. It’s really unbecoming.

That’s all for now. All my love to all my loyal friends. You may not know how much you have done for me, simply by being there or smiling and making me laugh with jokes. Laughter is amazing. You can never have too much joy in your life. I may not be able to see you as often as I’d like (face to face), but as my sweet grandmother used to tell me.. rest her soul… “You’re thought of a lot more than you are seen.” You can believe that is real.

%d bloggers like this: