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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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New Year 2013


It’s been a while since I’ve written. It’s a new year now, and so it seems like a good time to get up and move again (proverbially) in spite of the present challenges. I’m going to make an effort to keep the blog more active again.

Right now I just want to say that last year is not an experience I would care to repeat. I commented on my Facebook page that I’m not sure whether to threaeten to grab 2013 by trhe throat and drag it down a better road, or talk nice to it and pat it on the head. One way or another however, I expect more positive changes this year – and I will to find ways to make that happen for me. Somewhere in between the days that require medication to get out of bed and function, there are the days that can be seized and relished. I was doing that some before I went down the path of two major surgeries, loss of household income, loss of health insurance, and various other blows. It’s taken me some time to recover balance, but I’m getting there. I lost my remission. I hate to say that anywhere, but I did. I flared. Oh well. I’ll get it back.

I have to say something encouraging though. I have the perfect news to share in the light of that intent. If you’ve followed the saga of my freakish discovery of an idiopathic (means “We have no idea why you have this”) heart condition, then you know just how challenged I have been over the last year. I scrambled to get in my annual cardiac stress test before the insurance coverage ended, and it was a blessing. I already knew the left ventricular hypertrophy was stable (it had to be for the shoulder surgeries to happen), but I was not given much hope for improvement any time soon, if ever. There was a small chance of it over time. With an ejection fraction of 45% (which is 10% below normal), I needed two medications to lower my blood pressure and regulate my heart rate. It needed to be slower and better controlled because of palpitations. As of my recent test, my EF is back to 55% – NORMAL – and goes up to 65% during exercise as it should. The Dr indicated that day that he believed it might be, but I wanted to wait until the follow-up visit for verification before blurting about it. I am stuck with medications for maintenance. I think however I can live with that. The alternatives are not appealing.

Unfortunately it also seems that I have autonomic dysfunction. Some type of neurocardiogenic issue, possibly POTS, possibly something else related. Let’s call it orthostatic intolerance to be totally accurate, and I’ll add that I only have “pre-syncope”. What all that means is when I stand up my autonomic system doesn’t regulate like it should and my blood pressure drops instead of compensating for the change in position. My brain isn’t getting enough oxygen and I get lightheaded. Some people pass out (syncope) but mine isn’t that severe. I’ll be grateful for that and hope it stays that way. It is apparently responsible for some of my fatigue and other symptoms like electrolyte crashes and sudden cold sweats. I mention all of this for the same reason I share any of my health concerns. Someone else out there reading may say HEY… that sounds like me! Women’s heart disease is a serious matter and I am all about education on the subject. I wish I had known what I know now MUCH sooner! So I have to be diligent about staying hydrated, and it turns out I have been right all these years when I told Drs that I cannot reduce my salt intake without getting sick. They always insisted I should because of the hypertension. The problem with that theory is that 1. Not everyone’s hypertension is affected by salt, and 2. I have distinct and oppositional conditions that make that a bad proposition. They also assume that all of their patients eat the same. I am not consuming a typical American diet of prepackaged, prepared, processed meals. That means the only salt I get is what naturally occurs in the fresh food as it grows or what I shake on it myself. If I take that away I feel like death warmed over. I was right. I’m gonna say it. I TOLD THEM SO.

I will also say right here that I have the best cardiologist in the world. I love him to pieces and I hope he doesn’t retire until I don’t need him anymore, or maybe he has some fabulous protégé’ to replace himself with. I wouldn’t trade him for gold. He’s conservative, invested in his patients, highly intelligent, and absolutely sensitive to our well-being and how every decision affects our lives. He didn’t want to change my medications other than to try reducing one of them because I’m doing so well – with caution. Basically he said I’ve lived with this other thing a long time and adding a medication would fight with the present treatment. He said I know how to manage it and there’s almost no chance of it worsening. I’m good with that.

This sums up 2012’s events in a nutshell: Cardiomyopathy diagnosis, two major surgeries, SLE remission, lost my insurance, lost my remission, got great news about my heart, and ended the year not sure where to go from here because of all my Drs that will work with me on cost, I can‘t afford to see my rheumatologist until I get insurance again. That should make you laugh, and I hope it does. I’m smirking right now because what else can you do? I often ponder the irony that I constantly live one of my favorite literary lines… “It was the best of times, it was the worst of times”, and I have been doing so for a very large portion of my 45 years. I believe I am in the throes of an extreme example at present.

Now you know the meaning of the ancient curse, “May you live in interesting times.” (That’s not supposed to be a good thing.) Would I however wish for boredom? Never. In the midst of conquering my fear over what this diagnosis meant for me, I created new avenues to bring awareness to other women about heart health. Life is work, even when you don’t work. Purpose is what makes us real humans. If you don’t have one, find one.. great or small. You never know what some small thing may mean to others.

 

 

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