Lupus Medications are my Chronic Illness Reality

My psychologist wants to wean me off of my anxiety medications.  Fine, super, go ahead.  I can do this.  (I lie to myself.)  During our 10 minute session, she asked me wpsychologistho my pain doctor was, and she said that I should also get off of my pain medicine.  She didn’t ask one question about what pain(s) I deal with regularly, no inquiry of how lupus and fibromyalgia effect me.  I haven’t been seeing this doctor for very long, so the answers to these questions have not been established.  She simply declared that I no longer needed medications.  Then she floored me as she brazenly stated, “It’s not like you have cancer, or terminal cancer.”  I picked my jaw up off the floor and told her to go to _#!*%, and I charged out of her office.  (Only in my mind, sadly.)  My unfortunate reality froze me and I stared at her, dumbfounded, silent.

Did I hear what I think I heard?  Yep.  Does she not realize what chronic illnesses I have?  Can a doctor (psychologist) be so ignorant?  Why did I say nothing?  Not even a peep.  I have several, anxiety medicationbeautifully prepared, eloquent speeches for this exact situation.  I’ve rehearsed for this moment, to educate folks about the challenges of living with lupus and fibromyalgia.  Yet I sat there tacit and statuesque, afraid to breathe too hard.  I’m a coward.  Doesn’t she remember when I shared with her that I recently had a panic attack while getting a massage?  Who does that?  Of all places on a massage table?  I mean, really now!  If that isn’t proof of my anxiety problem, then nothing will convince my doctor.  I want to tell her where to shove her prescription pad.

My doctor’s ignorance and disinterest in knowing the fundamental nature of my diseases offends me.  It’s shocking that one of my doctors is so uninformed about chronic illnesses in general.  My silence is more surprising, disappointing. 

silence

I hate the world some days.  But the hardest to stomach is when I hate myself.  Today is that day.  There’s no escape from oneself. 

When I started my blog, I promised myself to keep it upbeat, positive, and motivating.  I wanted it to be educational, where you could cozy up, relating and feeling comradery with your chronic illness laden brothers and sisters, your nonjudgmental family.  I’m straying from all of that today.  I’m not going to apologize for this. 

What I will beg your pardon for, is letting us all down.  I allowed an opportune moment go by, where I could share and stand up for all of us living with chronic illnesses.  I failed us today.  I am truly sorry. 

While I would never want ill for anyone, sometimes I wish folks in my life could walk in my body for bed riddena bit.  Take a little walk-about in my skin.  Perhaps then, they would understand why I’m afraid to leave the house some days; why I can’t get out of bed occasionally; why I cry and don’t want to talk about it; why some days I’m ok and some days I’m on death’s stoop; why simple tasks exhaust me most days; why I’m depressed; why I have anxiety; why I need medications to help me get through each day.  My disease pains and challenges are the motives of my “whys”.

I try so hard to be strong, but I realize now that my silence does not equate to strength

The current me would find a new psychologist.  Then tell my old psychologist where to find my blog.  She would then read this and be filled with sorrow and regret, vowing to educate herself on lupus and chronic illnesses in general.  Reality dictates that I quit day dreaming, grow up emotionally, and most importantly, make you proud that I am one of you.  I need to speak up. 

speak up

Hey doctor and family, I am sick.  I’m not getting better – ever (unless a miracle occurs and a cure is discovered).  I have lupus.  I have fibromyalgia.  I have Reynaud’s phenomenon.  I have a Chiari malformation.  I have polycystic kidney disease.  I suffer from chronic migraines, intermittent joint and muscle pains, extreme fatigue, anxiety, depression, brain fog and photosensitivity. 

I have found that one of the best ways to describe what my body experiences, is that it’s like moving through water.  Imagine how strenuous it is to walk in a pool, or the exertion needed to get ready for the day moving under water, or making medications-1442283_640dinner where the fishes breathe.  All movements would take considerable effort and it would be exhausting.  That’s my life practically every day (even the good days).  Medications enable me to get out of bed, to function on a more “normal” level, to live life in almost every respect.  I despise needing medications, but since I don’t want to be bed-ridden with pain, I choose to take pain medicine.  I choose to take anxiety medications to keep my fear-monsters detained.  I embrace life on my chronic illness terms.  I am not sorry for this. 

I promise you that I will speak up next time. 

Crap, now I need to find a new psychologist.

find new psychologist

 

Lupus Awareness

May is lupus awareness month. Bringing publicity to lupus can make a difference in funding research and hopefully finding a cure. On a personal level, when is the right time to make others aware of your lupus?