I cry

I cry.

I have this moment after every infusion where I cry.  I’m alone.  It’s just a few tears, but it’s tears of remorse and a reminder of my reality. 

Even after four years of coping with RA and figuring out the best treatment, I still haven’t grasped the concept of this 1000 mg bag of medicine.  The last year has been bittersweet.  The infusions are working.   I am now in control of the pain.   The pain is manageable and rarely debilitating, BUT I can’t get over this bag of medicine.   I get so emotional.     It’s as though this bag of medicine reminds me of what I try to hide from the world every day.   It feels like this medicine holds the key to all my health successes.    It resembles the past and the failures of past treatments.  It also represents my future and my life expectancy.  

As I sit here writing I think to myself when I actually pull emotions apart from logical thinking, I can recognize that for me dealing with the pain daily is more bearable than coping with “the bag” of medicine.   I can deal with the madness of the pain.  I can deal with the lack of empathy and the lack of understanding from others.   I can swallow the prejudice and judgments that come from those who don’t really understand survivors of chronic illness… but this bag of medicine causes me emotional and psychological grief.  It causes me to pause in my willingness to fight.  It makes me weak. 

And so I cry not because RA has beaten me down on this day, but because I’ve become reliant on the biologic medicine.  I lean on it to make me feel better.  I cannot fight this battle independently which is indicative of my strong personality.   It reminds me that RA cannot be cured.   It reminds me that I am mortal and there could be a sooner end to me because of it.  The medicine reminds me that RA will continuously complicate my life and my quality of it.

I’ve been crying a lot lately.  Crying to me means many things.   It is a release and a sense of power.   It is fear and its happiness.  Crying is a sense of loneliness and togetherness.

I cry after yoga which I just returned to after four years of a hiatus…(yay me!!!)  because it’s a release.   A release of stress, anger, and fear. 

I cry because I got through an hour of yoga with success.  I pushed through the discomfort and pain.  I cry because once again I backed RA up into a corner and kicked its ass. 

I cry because I know how much willpower I will have to gather to come to another yoga class.

I cry because I know the pain that is coming after this bout of yoga.  The pain that will make me second guess my successes and make me want to give up.  I cry because I know I’m going go through this cycle repeatedly. 

I cry because I feel lucky enough to have a small support system to get me through the bad times when I know many chronic sufferers do not. 

I cry because I feel alone…almost always.  Even with my small supportive group of loved ones, I truly have no one that fully understands my battle.  I cry because to truly understand chronic illness and RA you have to live it and I do not wish this on anyone. 

I cry because every day there is someone else being diagnosed with an autoimmune disease and they will feel like me. 

I cry because it doesn’t matter how many punches RA or the people who doubt me throw, I will continue to fight back. 

I cry because I know another invisible fighter will come across this, read it, understand it and know I am writing for them…

Inspiration… where??

I haven’t written in a while. I haven’t been in an inspirational place.  My Blog was created to inspire others.  To encourage others to keep fighting their chronic illness.  Right now, I feel nothing of the sort.  I, myself am barely hanging on so how could I inspire others right now.    My husband suggested that I write anyway.  He said my followers deserve my truth.

I’m struggling.  I’ve been struggling for months now.  The pain is not as potent due to the infusions but my energy has not increased. I have no motivation and care even less.  In many ways I have given up or at least it feels that way, currently.   I really don’t want to be anywhere with anyone at any time but in my bed or in front of the TV.  Right now, the death stare is on full blast every evening.   I get the impression my husband is terrified of me.  He comes to bed late often.  He says its due to computer work for his photography club and\or laundry.   I think it’s to ensure that I am fully asleep.  To ensure the miserable wife has gone to bed and walking on egg shells is no longer required.

I can barely make it through the day.  All of the body movements you are required to use to complete tasks, the ones that everyone takes for granted; hand movements, walking, and driving is exhausting for me.  Its absolute torture for me because all movements and all tasks rob me of energy.   Every morning I wake up and contemplate calling in sick so I can sleep the day away.  So I can be alone in peace and do the bare minimum until my kidlet gets home.

I can barely eat with pleasure now. I have permanent indigestion.  Everything bloats me, causes gas and heartburn.   I’m a great date.   I either want to vomit or shit and I’ve just learned RA causes this too…  LUCKY ME!   YAY for us RA sufferers!...   Unfortunately, I’m still fat.   Which seems even more evil than the symptoms.   At least Ms. RA could help me lose some weight through all of this.  I swear this is why RA’s gender is female.  She can’t help a Sister out.     “You can’t look good while she has revenge on your body”….

These last few weeks I’ve had tendinitis.  It started in one foot now it’s in both.    I’m barely walking.  I’m shuffling now.    This feels old and sad.   I get a glimpse of what I will be like when I am crippled.  Crippled is not a nice word but that’s exactly what you are.  Your hands and feet become crippled.  Your toes and fingers become deformed and physically mutilated.   You are crippled.….and this is common for many RA suffers.

It seems everything I’ve researched lately, all my symptoms are indicative of RA.  RA is the cause of this , the culprit of that… the asshole behind all negative symptoms.   Just once I’d like to look up a symptom of RA and it says “RA helps you becomesa millionaire” or “because you have RA you get a dream house in Aruba” …

Welcome to depression.    I have entered the autoimmune disease depression phase.   This is also common and hard to avoid.   It happens to everyone and several times throughout your autoimmune disease life.  This is my first real bout of it.   I’ve had my “pity party” sadness but that usually ends after day one.  This is different.   This is the realization that you will feel all of these symptoms for the rest of your life.  This is the realization that many of you life goals may not be accomplished.  And the biggest one for me is… the realization that you will be dependent on someone or something (cane, walker, wheelchair) at some point during a duration of your life.   This is the kicker for me.   This is the hardest to accept.

I have been independent all of my life.  Usually it is others that depend on me, which now is also troublesome.    I do not have the strength to physically be there for others nor do I have the strength to accomplish tasks on my own.  I can’t bring anyone coffee because I can’t carry more than one cup.   I can’t apply complex make up or wear shoes with buckles.  I can’t hold the makeup brush for very long nor can I use my fine motor skills to do up the buckle.   I feel useless.    I feel as though every fun characteristic that is me… is fading.

I haven’t worn heels in weeks and it is contributing to my madness.   I know … many of you are thinking big deal… it is to me.   Heels are my way of expressing myself.  Heels can give you grace and confidence.   They give you height and poise.  They add pizzazz to any outfit and they are damn sexy.   And I’m all bout showing off dem sexy legs….   Flats are exactly that… flat.   Boring and uninteresting.  Although, I do have to say shoe designers are coming out with some nice designs as of late… and of course I’ve bought some, cause I have a shoe buying issue and cause I wanna and cause it makes me feel better... But to say the least my personality is quite flat right now so why not wear fabulous flat shoes…

As this is coming to a close,  I think to myself, others will think that I am trying to get sympathy or attention.  Others will think I need the attention of people checking in.  I don’t.   I need you to listen.   I need you to open your eyes and see what goes beyond what is in front of your face.    I am writing this because how I am feeling is how many men, women  and children feel alongside me.   This is real.   This is the reality for many people that you encounter everyday and sometimes it is worse than this.   The suicide rate is high among chronic illness sufferers.   They feel as though they are alone.   They feel as though their pain is swept under the rug and that they are invisible.   No one is truly invisible.

And even though I may not feel very inspirational or that I am accomplishing very  much.   I know I am.  When you break it down.   I get out of bed every day.   I make my daughter’s lunch every day.  I do my daughters hair every day.  I go to work every day.  I help others every day.  I run errands every day.  I smile at someone every day.   I still GET UP and DO… every day.  Even though it kills, even though it hurts, even though it’s tough.   And that is… inspiring.  And That is  the true definition of fighting.

Keep fighting… and keep being kind.