Chronic illness sucks

There is just no other way to put it. It adds so much extra stress in my life.  I worry about my health almost constantly.  My illness is also invisible I struggle with how people perceive me. I am basically a paranoid drug addict. 

I have trouble understanding my own pain which makes it difficult to explain to others. As a chaplain I have told/been told ‘pain cannot be felt by another, only shared.’  This is true, but I have a hard time telling myself I am in pain let alone another person.  I was sick this weekend and it took me all day to realize I was crying out of pain and not an emotional reason.  I would start to cry and say ‘I don’t know why I am crying.”  I did so much better after I took a pain pill.

It’s lonely being sick.  I am blessed to have a partner in this with my boyfriend; but when I’m in pain or over-medicated I feel very far away from everyone, including myself.  It’s like only half existing.  I’m not able to interact or even just listen.  In these moments I don’t feel like myself and am debilitated by the feeling like I have nothing to give.   

I had to also take a day off from work this week.  I was struggling all morning and hit my breaking pint at about 1pm.  My boss understood but because I look fine I have a tendency to over explain.  Over explaining makes me feel like a liar.  And then I start to question myself, “am I really sick?”   

I have friends who understand my illness, and some who don’t. My closest friends have had moments of understanding, then not, and back again.  I had a friend who was so upset I could not go out exclaimed, “Your pain will always come before what I want, won’t it!!?!”  During seminary my roommate moved out because she could not handle the attention I got because of my illness.  These are the same friends that have held my hands in hospital rooms.

Lupus is often characterized as a wolf and that’s really what it is.  I live with this beast that terrorizes my life.  Even when the wolf isn’t gnawing on my leg I’m constantly peering out the window worried about its approach.  

What it’s like to work "on call"

It’s almost 3 am in the morning and my phone goes off.  The beeping makes my heart stop as a grapple with the sheets to sit up.  I answer the phone as formally as I can but I know I still sound half asleep.  Josh stirs but falls right back to sleep. 

Nurse on the phone, “Want to come to the south side of Chicago?” 

Me, “No.”

I go anyway.  There is no one else on the highway but it still takes me an hour to get there.  I chug caffeinated soda and sing at the top of my lungs on the way there to keep myself awake.  When I get to the nursing home they tell me there have been two death and the families of each are here.

I go to the first room, I give my sympathies and we say a prayer.  The family thanks me and goes home.

I go to the next room and repeat but we finish our prayer one of the family members open up the window and lets in the fall air.  He starts a Native American prayer song and he cries as he sings.  We all stand crying, holding hands circled around their deceased loved one.  My whole body covers in goose bumps as a let go and fall into the experience. The family thanks me.

I go and do paper work.

I get home about the same time I usually wake up.  I hug Josh and go to sleep for a few hours and wake up feeling like someone has hit me with a baseball bat.   

At work I discover that I will have to go and fill out paper work with a family two hours after work, also as part of my on call duties. 

Due to where they live and driving logistics this means I will not get to go home till 9pm that night.

I bight my lip and hold back tears.  I go to the bathroom and splash water on my face.  I try pawning off this responsibility on someone else.  I warn my manager that I am near my breaking point.

I sit in a grocery store parking lot eating bad sushi to pass the time.

When my job was done and I drive home, I cry very tired tears.  Josh listens to me and hugs me, my dog licks the tears off my face.  I am so tired. 

I drag myself into bed and try to sleep knowing that at any moment I could be called out again.  When that idea runs into my mind hot painful tears come out just imagining it. The painful part being that if I can’t rise to that challenge somebody who might need my support will go without.  This is a heavy responsibility. 

I fall asleep but wake several times in the night to check my phone and make sure I have not missed anything.

By some small miracle I make it to the next morning.  Get up, get dressed, and somehow find the will to make it through another day. 

A healthy bit of distraction

I believe we all need a healthy balance in our lives.  One of the most important things to balance is work and play. I think we all need a dose of distraction, silliness, stupidity, or guilty pleasure in our life.  You just can't give %100 of yourself %100 of the time. 

I had a life threatening experience and when I got out of the hospital I was determined to stop watching tv and be more productive. This was probably a side affect of the many many prescription drugs I was on. It's just not possible to be so productive without down time.  I slowly came to realize in the following  weeks after my declaration that I really just wanted to sit with my friends and just 'be.' 

When you are in pain, emotional or physical, tv can be used to numb the body. 

Sitcoms are great at this. 

I watch the office, there isn't even a laugh track to jar you awake. I suffer from chronic pain and tv has become so important to help me dull the pain.  

Your distraction doesn't have to be tv, it can be anything that makes you happy and requires only a few brain cells. It's even different than a creative outlet or catharsis, your not doing it to accomplish anything. You are doing it just to 'be.'

 I can tell a big difference in my day when I take the time to read at lunch. The change of pace does me good. 

But it's all about balance! 

I am not giving you free reign to watch tv all day and shirk your responsibilities. We need small doses of distraction and a dedication time and place for them. Put down your phone when you are talking to someone. Turn off the tv when your love tells you about their day. 

But also stoping pinning inspirational quotes like "You have the same number of hours in a day as Beyoncé."  That's too much pressure!

Be you, instead of Beyoncé. 

Be balanced and whole.

Be silly it's good for the soul. 

 

Does working for an unethical company make you unethical?

I have worked for my fair share of forprophet and non-prophet companies. One of these for-prophet companies was my father's, who kept me on the books as employee so I could have health insurance. (This was way before the affordable health care act)

 I asked a pastor friend if we were doing anything unethical. He said that to dup a corrupt institutions was not a sin. Meaning to fraud the institution of health care was not bad because the system of health care was bad. 

I have since studied theological medical ethics and am a board certifiable chaplain. In this education I came to the conclusion that any for-profit healthcare was an illogical paradox. 

Cut to today 

I work for a for-profit hospice 

(Face palm)

I work for a illogical paradox and my position is one of the only ones that is all overhead, basically I'm the only one that cost the company money.  

Overall I believe that this company is desperately trying to help people, because of the caring skilled people they have hired. But they have also taken a staff that should cover 9-10 hours of the day and stretched us to fill 24 hours. 

I take extreme issue with this and have even searched labor laws in an attempt to fight it. But overall I have been complicit in these policies. I shut up for two reasons: 

When I am stretched it is for an actual need a person we care for needs

And because I can't afford to lose this job. 

I know I'm not alone in feeling this way about my company. 

Is my silence unethical? Does the good I do everyday for others outway this issue? 

Maybe what I'm talking about is the struggle we all face in the disparaging difference in our ideals and our practices. 

My ideals call me to help people, even when they cannot afford it. My bills say I can't do that. All of our ideals and ethics come at a price, know what yours are worth. 

Is it impossible to have a 50/50 relationship?

The struggle is real people!  My lovely boyfriend and I communicate well.  We can talk about everything from philosophy to the consistency of our poop.  We strive for a 50/50 relationship with bills, chores, and general power. 

I do the laundry, he does the dishes. 

I pay for Netflix etc. and he pays for cable.    

I take him to the farmers market he picks the restaurant for dinner.

We have had problems with this!  I find it hard when the dishes start to pile up and he doesn’t seem to care. Both of us have been underemployed during this relationship and can’t pay our share.  He does not cook, and this drives me crazy.  When we first moved in together I would cry, “I’m not your fucking wife!”  I hate being stuck in the kitchen mostly because of gender stereotypes; yet it is actually an activity I enjoy. 

It’s a constant struggle to find a balance, to enjoy and love one another even if the dishes aren’t done.  I try to breath and reboot and remember all the times he has shown me mercy when I wasn’t holding up my end.

We also play with this dynamic in the bedroom.  I am dominate and he is submissive, not %100 of the time and no we do not have a sex dungeon.  We don’t have a safe word, no still means no… but I do tie him up and whip him.  This is still a 50/50 endeavor.  I think all sex should be!

I hope that in our relationship we get points for trying.  

Small Problems

I have trouble sympathizing with my friends and family who have ‘small simple problems.’

In the midst of getting a flurry of text about one friend’s bridal shower I was also receiving texts from another friend who is being tested for cancer.  It’s hard not to compare the two.  I place judgment or value on each crisis. Cancer is a real crisis….having to throw a party for a friend who is throwing herself a wedding, not a real crisis.   

            In my head I know that each person has a different normal and when things divert from normal it is a crisis for them.  But, my reaction is to roll my eyes at brides and pray for my friend to please not have cancer.

            In vain hope, I pray as you read this, you might think, of course one is more important than the other!

            Those of us who have been to hell and back can sometimes become callous to others’ problems; because we judge that we have been through far worse. As a chaplain I hold hands of people who are dying and comforting the families who lose them.  I, with incurable disease and chronic pain… I become callus.  I become unfeeling to the rest of the world that have issue I deem smaller than mine.

 I view the world through “first world problem meme” goggles.

            Though I feel justifiably right judging others problems, this attitude will not serve my relationships.  I truly believe that “comparison in the thief of joy” (Theodore Roosevelt)

            If I want to be there for all my dear friends, I have to unroll my eyes and listen to their pain.  As I write this I also think this is a balancing act and that SOMETIMES people need to be told, ‘some people wish their problems were as small as yours!’

            I remember once, when I was in a pit of pain and depression I was on my way to see a friend who was graciously willing to hear me cry and talk.  In the dark of that winter’s night when I pulled out of the driveway I saw a homeless man looking through my garbage. 

I felt like garbage.  I felt like my problems seem so small compared to this man who is looking for something to eat. My friend reassured me that I can have compassion for the homeless man and still be in my own pain.

Pain is pain is pain. 

Pain cannot be shared, only felt.

In spite of my own pain I can still listen to yours.  

Welcome!

So about once a year I get urge to write a blog.  Who knows why, maybe it’s a hormonal imbalance or the fear of winter, but… yah, I want to try and write another blog.

In the past I have tried to write anonymous blogs about Lupus and Chaplaincy.  I did put my name to a blog about spirituality before. 

But this blog will be different!   

This blog will be about everything and I am putting my name to it.

If you are here to correct my spelling and grammar, please go away.  I am a writer in desperate need of an editor.  So, when this blog becomes a book I will let a professional fix that.

Who am I?

I am a 31 year old white woman, plus size, liberal, chronic illness fighter, ginger American and chaplain; residing outside of Chicago with my boyfriend and dog. 

Some things that matter to me:         

Being analytical

Inclusivity

Caring for others

Validations of faiths and philosophies that cause no harm to others

Embracing contradictions and hypocrisy

Crying as a strength  

            (and here’s the big thing)

Having a philosophy that works in your life and knowing why you make or made decision.

Each day we make choices.  Even when we take no action, that is a choice made.  Even in times of survival instead of thriving we are creating our personhood by the choices we make. I used to yell at a friend of mine who had been dating a guy she didn’t seem to like for something like 5 years.  Whenever she said something disparaging about him I would declare, “1/4 of your life!”  Our choices define the time we spend on people and endeavors. 

In a way we are obsessed with time.  We pour over the seconds of a day and when we need to be where, but we hate adding it up into larger sums. I spend at least 5 hours a week in my car, that’s 20 hours a month.  1,040 hours a year in my car. I “have” to commute for work.  But I chose my job so in a way I am choosing to spend 1,040 hours in my car each year. 

Today I challenge you to take ownership of your life by owning your choices.