A poem composed in Emerg

Nothing is promised. 
There are no guarantees.
Everyday is a gift and so if you please, 
Fight for your life.
Fight for every moment. 
Fight for the love that keeps you moving.
Life is hard, so many barriers to burden. 
Life wasn’t meant for just rainbows and flowers.
It was meant to create thought and events to keep holding. 
Evolve your mind, body and soul and in the end hopefully you’ll achieve your reward of feeling whole. 

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Depressed … Who Me? 

I think it’s about time I admit it.   Yes, I am depressed.  I feel lost… for many different reasons.   I am now in my mid 40’s.  I am scared to death of getting old and what that will bring on all levels but especially with the autoimmune diseases.   I’m already nasty when in pain.  “Lard… help the children in our neighborhood during that time period”.

 I’ve had to terminate my goals of higher education because I physically can’t do it.   Mr. Lupus and Ms. RA will only allow me to do so much in a day… My career goals are on hold because again I can only do so much and right now I have to focus on staying in remission.    YAY!  Such ambition… stay in remission…  I know for many of you, this would be a significant achievement.  It truly is.   I’m just so use to accomplishing goals on so many different levels. It’s tough for me to be stagnate. 

Now I hope that the word “depression” hasn’t sets off alarms in people that know me.   Depression comes with this autoimmune territory.  It comes in waves and in stages.   There is also a big difference between situational depression, chronic depression and a chemical imbalance.  This is situational depression.  The term and the emotion “depression” shouldn’t be scary. There shouldn’t be this huge “gasp” knee jerking reaction when you hear the term.  Life in itself can cause depression.   Significant changes in life can cause depression.   Losing a loved one through death and\or heartache causes depression.   Being broke causes depression.  There are many many many situations and circumstances that can cause depression.   Life is depressing sometimes!!  Life can really suck ass and make us feel like shit and that’s DEPRESSING and guess what?  It’s common. 

Be concerned when that depression stops you from living.  Be concerned when that bout of depression is more than just a time out away from life.   When you’re having trouble getting out of bed, taking care of your hygiene and you’re missing lots of work\events… maybe it’s time to seek professional help.   If you are thinking suicidal thoughts and\or thoughts of self-harm, please reach out to someone… you are not alone. 

I am getting up every day, functioning in my roles (wife, mother, daughter, friend, counsellor) and being part of society.   I am laughing and trying to be happy but there’s something off.   I do not know who I am anymore.   Who have I become?  Where has that fun, silly, energetic, thriving person gone?   I know that the wife, mother, daughter, friend, counsellor in me is present and I’m fucking fantabulous in those roles  but  the ME is suffering.   It feels as though the RA and Lupus have taken over.  They control my life.  Everything is scheduled around medication, pain and mobility.   My ambition, my goals, and even my outlook on my life depend on my pain threshold.   It’s maddening…

So as I sit here in my room of shoes, my tranquil room (side note “who would have thought the smell of leather and stinky feet would calm me”) reflecting… I come to realize that waiting for the pain to back off or take less control of my life is a waste of time.  I need to find a way to work with it, and to work within it.   The pain will always be there.  It’s may subside but it is a part of me now.  This is my reality so I might as well stop wishing for it to go away completely and ride it.   So I’m going to push through it. Swim anyway.  Dance anyway.  Live anyway.  AND when I’m tired and the pain is intolerable then I rest and do it all over again…

No single sufferers here

It’s amazing at how much our diseases consume us.  There are times when we only can see our own hands in front of our own faces.  At times we get so caught up in our own suffering that those “non-invisible fighters” become invisible to us.   Being a true invisible fighter also means knowing when to put your suffering aside to prioritize a need of another. 

  It feels as though I rarely see my “go too peeps” anymore.   I only have a select few that I bare my soul too.   So when I have the chance to catch up with these people I ensure that my soul “gets naked”.  Let it all hang loose, laugh, cry, fart, laugh hysterically, put the kids to bed and start again.    

I went to see one of my dearest recently.   We arrived and I wanted so badly to tell her how lost I’ve been feeling but when she looked at me in her foyer I knew that she needed me this time… So I put the lost me aside and enveloped her in the support the best way I knew how… I just listened.   She needed someone to lean on.  She needed to be pulled from the dark and I was able to do this for her.   Why? Because I am not the only one suffering.  Because I know that there is more to me than my disease.   Because I know that I can put my own heartache aside for someone I love. Because THIS… this exact moment of helping another in need is important, setting a side your own needs to prioritize theirs is what makes the world go round.   I strongly believe you only get what you give.  I know that I cannot live this life alone and I would never leave someone alone to live it…

It’s really challenging at times to come out of your own grey cloud but you have to.  You are more than just your pain; you are more than just your disease.   You are more than your depression.  Caring, loving, helping and assisting is a way to show yourself that it hasn’t consumed you.  You ARE still a selfless lovely human being… There are no single sufferers in this life…

Balancing Act

How many times do you hear “take care of yourself”?  How often do you hear from your medical professionals that in order to be well you need to follow a self-care regime?   How accurate am I when I say you sacrifice your health regularly for loved ones?  In all honesty, how much of your needs do you put off for others? 

If you have characteristics like me balancing your needs with the needs of your loved ones becomes a daily juggling act.   Being chronically ill doesn’t make me put myself in front of others.   I find myself putting off my own needs and\or struggles for others every day.  Even today, my mother needs something and my daughter wants to see her Gaga (grandmother- my mother) so I am putting off swimming (my medically ordered exercise for my RA) again.   This has turned into a regular occurrence and I know I am not the only Invisible Fighter (autoimmune\chronic illness sufferer) that does this. 

 Daily we have to balance whether or not we take the much needed nap or play with our kid.  Do we exercise or run errands for our elderly parents?  Do we take our meds and rest to decrease pain or do we take more pain killers to go out on that scheduled social outing?   In most cases I chose the latter.   Unless I am in absolute bad shape.   I know the fragile line of not putting my needs first, my condition will worsen and my family will suffer.  I walk that tight line…that tight rope consistently.   I’m quite aware if I do not take care of myself, I can cause more damage and/or end up in hospital.  AND unfortunately I am willing to risk this so I can care for others.  

So where do you draw the line?  How do you take care of yourself and others?  What do you do with that guilty thought of “am I being selfish?” when you do put yourself first?  Well… you start with identifying your triggers.   What can’t you say NO too?   What CAN you put off?   WHO can you say NO to?   You might have to take that big step and admit to family and friends that you cannot do everything. You might just have to communicate that you’re suffering in that moment and need to make the time to heal yourself. 

Balancing your needs against the needs of others… this is not an easy task.  Putting “you” first and saying “no” is incredibly hard.   THIS is work in progress for me.    I have a young child, an elderly mother, and both are extremely needy.   I have an amazing husband who would do anything for me, however he is a procrastinator.  A MAJOR procrastinator.  Soooo things will get done either in 3 days, 3 weeks or 3 months.   With me being an organized planner… this drives me absolutely insane and can cause World War 3.   Therefore, I have to be in pretty bad shape to ask him to organize anything. Truly…desperate.

 I suck at putting myself first.  It’s not in my nature.  It’s not who I am.   I always put others first, especially my loved ones.  If you need me, I am there… always.  I’m like a 7Eleven…open 24\7… packed with fun snacks.   I miss swimming often and I don’t take naps.  I pop Advil until I crash.  It takes crashing for me to stop.   It takes excruciating pain for me to put myself first.  It actually took a biologic infusion (IV therapy) to get me to think.   What would happen to my family if I were to deteriorate to the point of non-functional?   What would happen to my family if I couldn’t work?  Where would my friends and family be if I had a stroke and\or heart attack because I didn’t take care of myself first?  How would my loved ones feel if I died because I neglected my needs?  Prioritizing self-care is not selfish, even though it feels that way.   How can you taking care of yourself be selfish when the end results means you can continue to do for others? 

There is a way to balance your needs along with the needs of others…say “no” often.  Say “not right now” a lot.  Say “I need a day” once in a while.  Say “I need to do me” as much as possible.   

A Poet

No energy to care

You wake and you feel it in your bones.

The desperate wanting for a good day.

The feeling of positivity overcoming you as your feet hit the floor,

But recognizing it’s only the exhaustion that lives within. 

You close your eyes and say “fuck you I don’t have the fight today”.

So you drag yourself to your first cup of coffee and realize “I don’t have to fight THIS every day”.

“I don’t have to choose fight or flight every single day”.

 I can be neutral.  I can do nothing.   I can be nothing. 

I can fight for nothing and want for nothing for one whole day

And just be…

2 steps forward, 1 step back..

There will be several precipitating factors that determine how you’re feeling.   The weather and barometric pressure, the sun and how long you’ve been exposed, how much restful sleep you got, whether or not something and\or someone stressed you {short-term or long-term situations both contribute significantly}, the common cold, and most importantly your mind-set.  Feeling well is not simply based solely on medication.  This expectation will set you up for failure.  There is no wonder drug unfortunately…. or I would be popping it like candy!

This week was a struggle for me, as I’m sure many “spoonies” were feeling the same.   The inconsistent weather, this beautifully warm one day and cold as fuck the next is literally an autoimmune disease sufferer’s nightmare.  Your joints and muscles have no idea how to adjust to the barometric pressure so then they just get pissed off… and fight back.   It’s like Ms. RA and Mr. Lupus engage in an argument that turns physical except you’re the victim they attack.  They beat the living shit out of you, wrestling you down while you’re trying to fight back, but tapping out and giving up seems like the better option. 

This back and forth and up and down is sooo discouraging.    I was on a roll.   The infusions were working; I had little to no inflammation in my joints and no pain, so I started swimming again.  2 steps forward.  Then BAM… caught a cold that turned into a chest infection.    I can’t take my weekly self-injected methotrexate when I am ill.   So I lost a dose of meds which in turn makes me feel like shit.   I can’t swim, let alone function for the entire day…… 1 step back.   These are the days I want to give into the disease, throw in the towel, and just give up the fight.   I’m sure many invisible fighters just want to stop … and do.   They start making poor food choices, no longer exercise and\or socialize.   They barely leave their homes and allow the disease to fully take over.   If I were to give in to this disease, which does seem like the easier choice at times, I wouldn’t be me.   AND this is exactly what I remind myself during the lowest points…

Yes!  It sucks ass that I couldn’t swim today or haven’t swam for days, but I made it to work.   Yeah… I couldn’t wear the dress I wanted because putting on tights or nylon’s cause excruciating pain, but I walked up the stairs.   Absolutely, It fucking blows that I can’t dance and shake my ass all night, but at least I did for one or two songs with one of my BFF’s  on her birthday.  AND at times it’s absolutely devastating that I can’t run, play and chase my daughter around the playground, but I walked with her there, watched and laughed with her.  I even pushed her on the swings for a few moments and  that will be apart of her memory forever. 

Be an optimist; Someone that knows taking one step backward after taking a step forward isn’t a disaster, it’s the Cha-Cha.   

Spoons

Spoons

If you look around yourself and really hone in on those surrounding you; are you able to see those suffering from a chronic illness?    The answer is probably not.    Most of those who are fighting a chronic disease look fine.  Great even.  Invisible fighters rarely look sick and people usually can only see what’s in front of them.    This makes no sense because most of us become overwhelmed with emotion when we witness someone suffering and prefer not to see it.    So…most people try to look their best.   Looking ill is depressing BUT we only empathize\sympathize with what we can see.   Catch twenty-two.  Sometimes we humans are pretty stupid.

When I was first diagnosed with Lupus, my husband raised a good point.   “I understand all the medical technicalities regarding your illness but I still do not understand what it is like for you living with disease”.  It was then that I started to research a way that I could accurately describe it.

I found “the spoon theory” written by Christine Miserandino.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

She came up with the theory when her friend stated that same question my husband asked me.   So Christine tries to use a humanistic approach through using spoons as a metaphor for energy; to help her friend understand the effects of Lupus.   “The difference in being sick and being healthy has to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.  Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control” Christine says “when you are healthy you expect to have a never-ending supply of “spoons” {spoons being energy} But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting”. 

My husband would think that my evening ritual of reviewing and\or analyzing the next day’s routine and “to do” list was just my “anal organizational skills” or as he calls it “OCOD” {obsessive compulsive organized disorder} but it was really to figure out how many  “spoons” I need to get through the next day.  I sit there calculating “spoons” by the number of necessary tasks I absolutely have to complete in order to live life.  How many spoons does a spoonie use on a daily basis?

  • One spoon to get out of bed (worst part of the day)
  • Two spoons for lunch preparation.
  • Two spoons to shower all the parts, brush teeth, spread the lotion (this can take many more spoons depending on the day)
  • Two spoons for make-up, hair and dressing
  • One spoon for driving all day (I drive to my clients)
  • 8 spoons to get through a day of work. Overtime is extra spoons
  • 2 spoons for putting away dishes
  • 5 spoons dinner prep and cooking (another reason why I hate cooking)
  • 3spoons for cleaning up and washing dishes
  • 1 spoon for child’s homework and\or to play
  • 3 spoons to bathe child and prepare for bed
  • 2 spoons to complete any other household chore
  • 1 spoon for bedtime hygiene routine.

I haven’t included my child’s extra-curricular activities or notes written for teachers, extra homework, and\or play dates.   I didn’t add errands and\or shopping. Grocery shopping was entirely removed from my list for the safety of my husband’s well-being.  Friday nights would turn into Frightening nights and I was the nightmare.  First of all I hate grocery shopping period {there is nuttin fun or exciting about buying food} but once you add spoon absorption and pain to the equation… it’s deplorable.   I’d rather starve.  Then there is sex…. Sex does the body good… especially if you have spoons left over at the end of the night… if not… It’s literally go fuck yourself.  Unless you wanna just lie there then no spoons are required.  LMAO! {now that’s funny}.  Weekends… especially those spoonie parents need a shit load of spoons to get through them.   Days are longer and busier than weekdays.  Some spoonies nap to get through them and for added spoon bonuses.   The more you rest the more spoons you have.   I don’t nap unless it’s on a beach… I crash hard at the end of every day.  So on average it takes about 75 to have a basic functional day.

As of late, I’ve been short on spoons and therefore I reanalyse, prioritize and reorganize my “to do” list to fit my spoon collection… something I never thought I’d collect {spoons are not as enjoyable as shoes}.   I don’t even like them…

 

****Blog Picture – “Hammered Spoons by Heidi” was a purchase made to assist a fellow Spoonie in paying for treatment.    She is currently fighting for her life****

 

 

Laughing at the clock

Many would be shocked to hear that I hate my birthday.   I think the dislike came after my 25th.   The essence of time became limited and many deadlines came about.  Shit got busy and structured.   You’re always racing against the clock.  You never feel like you have enough time.   As we get older I find there is less time. AND  If you have children, there is even lesser time.   Our life expectancy is measured in time, years and birthdays.    So for me, birthdays are an indication that you are a year closer to your end date.  Yeah, I know… grim outlook. 

For someone who has such an aversion to aging,  I celebrate my birthday for weeks and with every important person available.   Hilarious right?  My theory is.. always spin a negative into a positive.  I use my birthday to my advantage.    Who can say no to you when you ask to see them on and\or around your birthday?  Not many…

The theory “age ain’t nuttin but a number” or ” its not about the number, its about how you feel”; doesn’t work for those suffering from an autoimmune disease.  We feel old all day, everyday.   Our bodies are old.  They crack, creek, snap and pop.  Get a few of us together, we could make some wicked beats.     We don’t look sick unless you open us up… and our organs scream “get off my grass”.  Then you know our bodies are old and miserable.   Just being diagnosed with an autoimmune disease shortens your life expectancy {scientific fact} ..so birthdays now are the “how long before I croak” reminder.   Its a scary thought, your life ending because a disease has the power to kill you.

Its because of that reason exactly that  I ensure I celebrate my day of birth.   I refuse to allow some disease dictate when and how and where I live my life and in what manner.   I refuse to allow this grim circumstance consume all of my life events and turn them into “I can’t moments” or “I’m too afraid” pity parties.  I need to continue to make memories.. feel good moments.  Everyone deserves happiness.  Everyone deserves to laugh.   Laughter is a great cure.  It’s an amazing pain killer and so I try to laugh as often as possible.  

Laughter is very present on birthdays when surrounded by your favorite people and so every year for mine, I gather those who are my “feel good” people to celebrate with me.   Most of my friends and close family members are younger and I read that hanging out with younger people helps you live longer.   I like this.  I now have another excuse other than an “immature mentality”{which also keeps you younger} to hang out with “the youngins”.  We get together, we bust balls {insults}, we laugh and we make memories.   I ensure that I take the time to cherish my life because in the end the clock won’t mean shit.  I also stay younger by being as silly and immature as possible.   I quote Eddy Murphy often {delirious and raw}.   Anything and everything to do with gas … has me in stitches.  I have a trucker mouth cause cursing just adds flavor to every story and I find it fun.   During these  precious times.. I forget that I am sick and for those few hours, I am pain free and just living.  

 

 

 

 

 

 

 

The Brain Fog

I’m making soup for my daughter and hubby.    I rarely cook so this is a big deal.   I cut the veggies.   I add my spices and broth and note that I need more broth.   I walk from my kitchen to the pantry which is literally 15 steps, open the pantry door and…. my mind is blank.   I walk back to the kitchen.   Then I remember the broth so I walk back to the pantry, open the doors AND blank…. I can’t remember shit.  I walk back to the kitchen, remember I need the broth… scream out FUCK!!!  Almost run to the pantry while the thought of broth is still on my mind, open the doors and grab the broth in a panic.  FINALLY! Task completed.   It only took 10 fucking minutes. 

Welcome to a day in the life of Brain Fog.  This is asshole Brian Fog who enters everyone’s life at some point… {usually due to sleep deprivation or when the age monster is comin to get ya} however for us Invisible fighters {autoimmune diseases suffers} this is an everyday occurrence.  Brain fog is not a medically recognized term but is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity.

Brain fog happens to the average person who is lacking sleep. When they catch up on sleep they’re back to normal brain power.  We Invisible fighters… towards the end of the day or on a day where we are struggling, most of us can’t even finish a sentence without forgetting what we’re saying, and\or stuttering.   Brain fog is basically what it sounds like; it’s fog in your brain that is clouding your thought process and disturbing your communication skills.    Many times when I am in the middle of a session with a client where I am on fire with providing great suggestions or challenging them regarding their own insight, all of a sudden I can’t get the words out.   Out of nowhere I appear to have a speech impediment and\or language barrier.  In that moment I just want to scream “I know the English language, I swear!  My brain is an asshole with a dark sense of humor!”   I’ve had friends and family members make fun of me and\or correct me.   BUT that stopped after they got the “don’t fuck with me “look and\or the “how the fuck can you be so insensitive” speech. 

 I have now created my own language; “pass me the thingamagigers… I need the whatchamacallits… those thingies”… also pointing and moaning has become quite common.    My admin assistant has learned to speak my language fluently.   It’s quite accommodating and refreshing.  My husband still needs practice.

If you are a great communicator, this is very frustrating.   For me, I take a great deal of pride in being able to reach others through communication. I have a gift where I am able to connect with others using my words.  When I can’t speak because I’m stuttering or forget what I want to say, I feel stupid and uneducated.   It’s extremely embarrassing.   I feel as though the disease is not only taking over your body but it’s also mocking me through fogging up my mind. 

This happens because of chronic fatigue but there are other reasons for it as well.  The average person who is suffering from a chronic disease doesn’t get a lot of sleep.  That sleep is disrupted by pain.  In dealing with the pain on a daily basis, trying to ignore the pain, and\or trying to cope with the pain also causes brain fog.  When you are in constant pain you give off a hormonal response that triggers your endorphin’s.  Your endorphin’s are a short term pain killer but if you’re in pain all day eventually those endorphin’s wear out and you produce another hormone (cortisol) that can make you quite angry when high levels are made.    Just ask my husband…. I have become quite the angry woman since Mr. Lupus and Ms. RA made their long unwanted visit.   

Several of my friends have now noticed when I hit my “wall”, the brain fog wall.  It is infrequent and illogical.  I don’t give much notice.  All of a sudden I am disrupting my husband or whomever I am with stating urgently that I need to go and NOW.  At this point; I have nothing left in me, no spoons {another blog to come}, no patience, and no mind.  I cannot process anything and therefore need to shut down.   There’s no real warning sign, you go from tired to non-functioning.    So if you ever met someone or are with someone who suddenly takes long pauses when speaking and/or stutters and/or mispronounce words, the Brain Fog may have taken over or they may just be an Invisible Fighter…. I actually think of them as Invisible Hero’s

 

Self-Pity in Chocolate

Peggy Bundy had it all figured out {the show…married with children}   Do nothing…   No housework, no cooking and no cleaning {well I can’t do that…seriously not possible}, while lying on the couch in front of the television eating Bonbons.   This is my kinda party… the pity party. 

My pity party is a private party for me, myself and I.   It consists of comfort food; chocolate, popcorn, chocolate, and sometimes ice cream  along with a complimentary box of tissue.  There’s no alcohol at this party and\or other substances {plus my addiction or substance preferred is shopping…retail therapy… which is my husband’s worst nightmare}.  Strictly water is permitted and encouraged to replenish the water loss from the waterworks eye show.  

 This usually occurs after I have suffered for several days consecutively and that one morning…simple tasks are  just extremely difficult and utterly frustrating.  I then know this is going to be a bad day.   I’ve been fighting hard but I just accept that Mr. Lupus and Ms. RA have won today.    So I put on my “fake face” for my daughter and see her off.    I go back to bed and sleep until the early afternoon, then move to the couch with my comfort food, water and tissues.  I watch all my sappy shows {This is US … sooo fing good} so I can ball my eyes out.   I’m not talking that cute cry with big sexy like tears.. like in the movie…looking all sultry and shit.  I’m talking the big nasty ugly cry… eyes swollen; nose running snotty face …where people would be afraid to approach you even if they were able recognized you. 

The pity party is therapeutic.  It’s a time to cope with all the emotions you’ve been pushing back and under the rug for the last several weeks.   It’s a time to allow yourself to have a “real “moment where you’re not putting on a front or a show.   This is where you feel your real emotions of resentment, anger, pity… It’s the “feel sorry for yourself phase”.   Not only is it OK to do this.   You NEED to give yourself permission to do it.    For me, these pity parties are essential for my mental health.   They give me the strength to move on and continue my “mind over matter” strategy.

A couple of hours before my family arrive;  I get myself together by putting the tears and self-pity away.    I start my “ positive self-prep talk”.   I remind myself that everyone has a story and mine could be much worse.   I could already have hands that are disfigured.  I could already be crippled instead of it just being a risk at this point.   I remind myself that I’ve been fighting my ass off  and have more points on the score board then Ms. RA and Mr. Lupus to date.  I remind myself..I AM winning!.. and today is just another indicator of that.  I also thank myself for the emotion cleanse and remind myself that I deserved this day BUT tomorrow we are back to KICKiNG SOME ASS. 

So enjoy your pity party.. and get the good chocolate.   Bad chocolate just makes you feel worse.