Tag Archives: autoimmuner

Life Lesson #4 – Unrealistic Expectations

While I wanted to make it to the end, I didn’t expect to and was happy with what I did do! Snowy trail I hobbled in sandals!

 

Commercials show us people building playgrounds and golfing after taking their miracle RA drugs, movies always show the perfect romances we are supposed to have, TV shows us that most of us should expect upper-middle class, healthy lives, and somehow we are under the impression that life is not supposed to be hard at all.  It is human to have goals and expectations.  We expect that this life will be one of happiness and relative comfort.  I am still trying to figure out the “0.5” in the “2.5 kids” we are expected to have.  My third child was actually a whole kid, so guess I passed the 2.5?!    Unfortunately, these completely unrealistic expectations also contribute to a lot of our stress and unhappiness – thus impacting our illness in a negative way.  Life lesson #4 is to temper those unrealistic expectations.    This will help your mind and body more than you ever know!

  • Life is hard.  Don’t expect anything else.  Take a look at life realistically through the centuries.  Life is the “easiest” it has ever been in the history of man, yet we have this illusion that life is way too hard of a struggle.  Yes we have disease – been around for ages (mostly without treatments), yes we have war, hunger, struggle, suffering, and injustice.  All of these have been around since the existence of humans.  Media in the developed world has created this illusion that we deserve and should never have to struggle or weather storms.  Life is a series of storms with some incredible breaks of amazingness in-between.  It always has been, and it is those storms that allow for the true beauty of life to shine through.  How we perceive these “storms” ultimately decides how we weather them.    No trial has ever been permanently bad.  Even the disease has brought so many positives into my life, and I would venture to say it has into yours as well.  No one wants to be sick, struggling, and dependant on someone else.  However, I expect to struggle.  I am sick.  I know that my life has to be planned very differently than most people’s.  So when something goes wrong (like my photoreaction at Arches), it becomes easier to roll with the punches and be thankful for what I did accomplish, rather than what I did not.   It is unrealistic to expect that my life will be anything but hard, but I think most struggle more than they let on.
  • Doctors aren’t Gods.  We often expect our doctors to have all the answers and treat us with a magic bullet.  Considering that we can go to 15 different doctors, and end up with 20 different diagnoses means that doctors don’t have all the answers.  Many are winging it!  While they are trained in the rheumatics, keep in mind there are over 400 of those diseases that they have to keep up with!  Reasearch on the few that are autoimmunes is relatively new and most doctors training predates this information.  Unfortunately, we still have doctors that won’t recognize the potential fatal complications associated with most autoimmune arthritis diseases or that any major body trauma could kick in a flare.  Disheartening is what it is, especially when trying to get answers!  While, we should expect quality care from our doctors, we forget they don’t have the Googling time we do, nor do they have the time to haunt social media support groups for perspective.  Doctors also have over-filled practices, leaving us with very little face time and often with substandard care.  We have a responsibility to help our doctors in this situation.  When you find a good doc (hard, I know), help them out by keeping up with the research yourself and educate them!  Don’t expect them to have all the answers!  Expect that your treatment will be trial and error.  Expect that your doctor will be human.  Expect that many meds won’t work.  These will make it much easier to handle all these roadblocks as they come up, and they will come up!
  • Expect to hurt and expect to get worse.  This is a degenerative disease.  Whether by age or illness, we will all get sick and deteriorate.  Autoimmuners just do it quicker than others.  Even with the best meds out there, very few of us escape the daily pain, fatigue, and strife associated with autoimmune diseases.  We will never go back to where we were before the disease hit.  So much depression is caused because of this single expectation to life a pain-free life.   Because of the nature of autoimmune arthritis, we will also consistently get worse over time.  The most advanced medicines out there are only effective for about 1/3 of autoimmuners, and by effective, I mean “shows some positive effect” not cured.  There is no cure for our illnesses.  We will get worse, and we need to live life expecting to get worse.  Everything we do is temporary, and this is especially true for Autoimmuners.  Every repetitive motion (like typing) destroys our joints and tissues.  When I was injured and tried to learn a desk skill (PHP/SQL), within 4 months of consistent typing I needed a new knuckle.  Every step I take is slowly crushing my knee, and I think I just dislocated my navicular this last PT round.  (Navicular is a bone in the arch of the foot.  I no longer have arches in my feet.)  However, I expect this and have decided I want the memories.  The bones will muck up regardless of whether or not I hike, so hell – I want the memories.  I also know that this ability is very temporary.  I am one bad flare or major body trauma away from losing it again, so I suck up every moment I am hobbling.
  • Expect no one will understand or even care.  People can only understand what they have been through.  Again.  People can only truly understand what they have experienced.  So when you complain about the pain of autoimmune arthritis, most people equate that with a stubbed toe.  They simply have not felt the constant pain of having their bones dissolved or deformed.  Likewise, unless they have a personal reason to care – most won’t.  We are the ones stuck between what is considered to me a mild illness and those who have immediately terminal illnesses.  Autoimmune arthritis is a long-term terminal disease (trying to coin a new term here).  It is potentially fatal, but kills over a long period of time.  Again, most of the research is within the last 20 years so most doctors have not been fully updated on this.  (***At 14 I found out RA was fatal in an Arthritis Foundation brochure, so the information was out.***) Most people these days are consumed with the daily struggles they deal with (that have been blown way out of proportion as far as seriousness goes).  Since we are not dead, this truly can’t be that bad – right?  Sad as it is, this is where humans are.  Very self-absorbed and completely ignorant of the interconnectedness we have.   They feel immune to the struggles we have, and somehow justify our diseases as something we did to ourselves.  Clearly we have not eaten enough cherries, turmeric, or ate too much gluten.  While this is disheartening, it is reality.  Utopia where people actually care doesn’t happen.  We cannot expect anything other than reality.  We can hope, but not expect.   I have found dealing with healthy people much more pleasant now that I don’t expect them to have empathy.  Those that do are pleasant surprises, and the stress of an ignorant person no longer boils my blood.  It is one of those “Bless your heart” moments as we say in the South!  (That means you are an idiot.)

Utopia is a nice concept, but isn’t reality.  A healthy, upper-middle class life is nice, but not reality for most.  A pain-free, struggle-free life is also not reality.  When we expect these things, life becomes a lot more bearable.  Mental stress is notorious for aggravating our diseases, and this is something we can actually control (with some practice).  Why add the stress and anxiety from unrealistic expectations into the mix?  Frustrations will happen and someone will annoy the living hell out of you at some point, but this will help to curb as much as possible!  Remember: You can only control your actions and thoughts, not those of anyone else.  So temper your expectations.  It starts with you!

Finding an Autoimmune Friendly Career

Market at Campo De Fiore in Rome, Italy. No where near my house, but it IS a farmer’s market!

 

Lately I have been much better  physically and have been considering going back to work part-time.  As Autoimmuners, it is very difficult to find a job flexible enough to cope with our ever-changing bodies, and management that will be supportive.  From day-to-day, flares come and go limiting our activity levels dramatically.   While I am feeling amazingly better than I was living in GA, I am still flaring and dealing with significant pain levels.  (After so many years, the damage is permanent regardless of the level of disease activity.  My disease activity is mild right now, but my damage is severe.)

Over the years, I have had several types of jobs ranging from optics to herpetology and pizza maker to educator.  Every career I start, I know isn’t going to last.  Any repetitive movements dissolve bone super quickly.  A few years ago after my knee injury, I tried to learn SQL and PHP.  I started a course in May, and by October my knuckle was eroded so badly it almost could not be saved.  I had it replaced, but lost all the length off that finger.   As an educator, I landed a knee injury after being wrongly placed in a severe autism room.  I loved those kids, but had restrictions on file.  Within a month, I was injured and needed a new knee (that was never fixed properly.)   So we have to be careful.  This isn’t as cut and dry as it looks!

Employers also do not want to hire sick people, and who can blame them?  If a healthy person is guaranteed to be there and be productive, why would you want someone who you KNOW is going to be sick?  Sadly, losing the ability to work a “normal” job is one of the most devastating experiences an Autoimmuner can go through.  It causes so much emotional grief and distress knowing you NEED someone else to take care of you.   What if there is no one there?  What if that amazing spouse gets sick or worse?  Lately, it seems many Autoimmuners are in that position.  Our diseases are not perceived as “bad enough” for community compassion, yet they are so bad that we cannot operate like every one else!  So what are we to do??

Being home working on my mobility has allowed me to pick up some new skills like bread, jam, and body care product making.  I have been considering working some of the local farmer’s markets here to see if that avenue would provide some extra income!  I am not sure how my body will cope, or even if it will do well – but I will be documenting the experience for y’all!  I have also considered setting up an Autoimmuner Business Exchange where those of us with crafts (etc.) can peddle their wares!  I am finding that the ONLY way to continue a career, is to diversify what I do in order to preserve my bones.  Besides, I don’t think we can count on Social Security OR the compassion of the community anymore.  We need to work together to lift each other up so we survive!   So fingers crossed that I can set up a small business that will do enough!  Ultimately, I want my husband to retire in his 50’s.  He is a former Marine that has served his country and our family well.  Without his support, I really would be so lost.  I need to contribute and make this dream of his come true.  He does so much for me and is so patient – even when I am prednisone grumpy!  Wish me luck!

Life Lesson #3 – leaving “human” in “humanity”

This tree made me push further. It is amazing how life can live in with such burdens. Like Autoimmuners.

 

The expression “to be human” or “only human” means that we show faults and vulnerabilities.   Some of our greatest strength and beauty is exposed during these times, yet lately the world’s people seem to be forgetting they are human.  Whether the labels are: gay, black, white, Christian, Muslim, or disabled – they are certainly flying with frequency.  Every time these are thrown out at someone, we see less of a human and more of an object.  This works both ways too!  As disabled people, I hear a lot of us griping about healthy people as if they were one annoying object.  They are our friends and family, neighbors, and not all are insensitive gits.  This extreme grouping/labeling thing crosses all boundaries.  Society is taking the human out of humanity and imposing the mentally constructed perfection on everyone else but themselves.

Why do we expect and accept this unattainable concept of perfection/normalcy?  Looking around from day-to-day, it seems that no one is the same.  Even the same person is different from day-to-day.  From minute to minute the weather changes, the river water is never the same water, etc.  See?  We can go on and on with examples.  So I think it is safe to assume the same concept applies to humanity. No person is the same, no one processes experiences the same, and no one has the same chemicals or experiences as the next.  So why then, do we use such a cookie-cutter approach to determining self-worth?

All these pains and issues will eventually happen to someone, whether by disease or age.  Everyone will eventually end up dead.  So why waste time bickering about things like: disease, sexual orientation, religion, and color?  (Just to name a few!)  It cannot be so hard to accept that some people seriously do feel legitimate pain worse than you may never know, that you condemn and marginalize those who feel it!  This concept applies to SO many things, and truly can be very spiritually liberating.  What does it matter who one loves, what they look like, or if they can walk!

When we start separating everyone into groups first, we train our minds to see that first.  We no longer see a human in front of us, we see that label.  Let me stop for a minute to say this,  labels are necessary.  They can describe us, explain things, and offer a lot of information.  It is all in how we use the labels, and react to hearing those labels.  When the labels start to polarize and illicit fear, then we have an issue – like what has been happening in the US and all over the world.  Let’s use an old example to illustrate this.  The Romans!  YES!  Those plucky Italians conquered the world, and wrote history.  Ever hear the word vandal?  What about barbarian?  Uncivilized?  Yep.  They used labels and ended up suppressing half the known world, to the point we still believe what the Romans wrote despite contrary evidence.  (Now would be a great time to Google Terry Jones’ series on Barbarians if you are lost.  It is good stuff, and Terry Jones!)  It has been a couple of millenea, so why are we acting like the Romans still??!!

So life lesson #3 is to keep the human in humanity.  Remember we are all imperfect beings, and the constructs of perfection are not reality.   Next time you see that person in the handicapped spot who doesn’t look sick, automatically assume they are an autoimmuner.  Don’t assume the homeless man can “get a job” or is using $ for drugs.  See yourself in others and put yourself in their situations.  As individuals, we like to think we are immune to certain things, when the reality is – we are always walking a fine line.  Things are always changing, and what is keeping you alive right now may not the next.  We are always having lunch with the Grim Reaper.   Always treat others the way you would like to be treated in that situation.  Never assume the worst.  Train your mind to assume the best.  Keep the HUMAN in HUMANity.