A Eulogy For The Person I Was Before I Got Sick

https://www.buzzfeed.com/laraparker/i-wonder-who-i-would-be-if-i-didnt-have-chronic-pain?bffbhealth&utm_term=.hupM55KKEp#.sp33nnkkwP

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Groundhog Day, Chronic Migraine edition

What’s migraine like? It’s Sunday and I woke with a migraine.  I think the weather has triggered me: it’s rainy, it’s windy and allergies are bad.

I took my medicine. Ice, Cefaly, rest. Marc did cranial compression. The pain is less but the other symptoms suck: lethargy, dizziness, nausea.

Gotta eat. Gotta shower and get myself clear fresh and made up.

It’s like Groundhog Day, the Chronic Migraine edition.

Got myself ready. Almost 6pm and I’m in bed… On top of the covers… Hurting.

When a well-meaning friend’s post triggers me…

This is my friend’s post:

This is my friend. She’s a super great person and I’m glad I know her. 

I can’t “like” her post and I can’t comment either. Because she doesn’t understand. And when I was 34, I didn’t understand either. God bless her. Her dream is to be a fitness model and I’m very happy for her. And she may never have anything Chronic happen in her life. The words in her post shock and sadden me; I feel accused. I feel belittled. I feel singled-out and misunderstood. I don’t think she means to be offensive; she’s speaking her Truth. But her words feel cruel and unleash feelings in me and I feel compelled to analyze them. 

I found a picture when I was 30. And I was blissfully unaware.

I worked out every morning – cardio, weights. I have always (and will always) make healthy food decisions. I woke up feeling refreshed. I moved like lightening. I cared for my little people as a doting mama and I found great joy in it all. I knew I had found the answer FOR ME. But I never ever assumed that my answer would be the answer for EVERYONE. I wouldn’t know that, in less than a decade, things would be totally different. My once episodic migraines, would start slamming me more and more frequently. And I strongly suspected there was something else – why couldn’t I wake up refreshed anymore? What was happening? Why were morning workouts becoming impossible on some days? I was an RN accustomed to working the early day shift but suddenly I was unable to come alive until noon. Someone help me! Something is wrong! 

Already experiencing depression and anxiety, my head was demanding a front row seat in my very busy life. The thyroid was demanding too. 

And here I am at 45. Unrecognizably changed. 

I still eat healthy. But I fight every morning to get out of bed. I demand every morning that my body do gentle yoga and free weights. Over the last decade, well-meaning doctors have tried so many medications to help me and my head: the meds have never helped my ailments much, but have made me gain lots of weight, taken my hair out in fistfuls, made me lose sensation of my face and mouth, made my legs swell to enormous size and given me trouble breathing, killed my libido, elicited fits of blinding rage, made me suicidal, produced a cough that left me gasping for air daily.

 

And through it all, I fight. I fight to be a mother for my kids, a wife for my husband, a friend to my friends. I fight pain…endless and pointless pain. I wake up exhausted, collapse several times a day and go to bed early – hurting and utterly exhausted. I sleep and sleep and sleep. And wake up to start the cycle again.

I wish to God there was a JUST DO IT button I could press. One to make it all go back to my early thirties when I was well and energized.
My friend doesn’t understand, bless her, and I pray she never does. When your body betrays you… despite your workouts, despite your positive “go-get-em” and determined attitude, despite your healthy eating.
Today, I’m lying here in bed…can’t even consider rising yet and using my body to move properly…11:00 on a Sunday morning…my RA flares every extremity and their joints, my Sacroiliac is screaming (I’ve got heat on it), my head…my head stings at a 5 but I’m delaying medicated because I want to make my pills last. My pills are the only thing that can keep me moving like a Normal human being most days. But I’m lying here in pain and totally useless. I slept all night – only getting up to replace ice packs for my head and adjust my heating pad and support pillows – oh and go to the bathroom because migraine makes me diurese. I went to a college football game yesterday. Sat in the stands and watched. I cheered, held my breath for plays, got to my feet for victories, expressed disappointment with errors. 

My husband and I walked thru the stadium and a few blocks to catch a cab. We laughed last night, we held hands, we talked about our children, friends and extended families.

This lying in bed almost to Sunday afternoon now is not my choice. I’d much rather be up by 9, showered, make breakfast for all, get to church, get washloads going, organize the garage or my house, clean the floor, garden outside… But I’m trapped…trapped in a body that hurts like hell with every movement. Trapped in a head that’s fuzzy and HURTING. Hurting so much that it robs my life of energy and stamina. 

Mind over matter…. I tried that noise. Over and over. And my mind and body said: NOPE!

I may not be ill for the rest of my life. I may be able to regain my health. But my friend is so lacking in understanding: I don’t have diseases based on how I treat my body daily. That’s bullshit. I’ve always treated my body super healthy. When my health began to fail, I had to be reminded to stop pushing my body for success. To lower my standards of success. To STOP challenging myself unrealistically – because what I used to be able to do – was something I could no longer do. Not because I didn’t want it the same, not because of poor health choices I was making, not because of anything I could change…but because I was slowly imprisoned…in a body of betrayal. 

I lived ignoring the pain for years. I tried mind over matter; no pain, no gain. I was determined to shake it off. I would end up sicker, with more pain and symptoms. I would end up crippled – just praying for death that wouldn’t come. 

I was even smacked with a disastrous case of Shingles at 38 for all my pushing – I was treading water just as fast as I could, trying to keep my head above and trying to breathe.

Who was this that I had become – despite my healthy life choices, my drive and determination, my great Love, my Faith, my kind heart? What a Life Lesson this is! One I would spare anyone from ever experiencing.

The Day My Botox Appointment Went Weird.

Monday started. It was Botox Day!🎉 Which is akin to Christmas morning for a Normal. It’s a BIG flippin’ dealio.

I’ve been looking forward to this day for weeks…since my magic juice ran out ~2-4 weeks ago. I’ve been a Botox regimen patient and going every 12 weeks for Botox injections for migraine prevention for seven years.

When I woke Monday, I had my old pal Pathologic Lethargy saddled up next to my psyche. Sigh. Moving through quicksand in a body full of lead. I muscled through getting ready (shower, hair, makeup), made my protein shake, got in the car and drove to Austin Neurocare. I sang the whole way (Twenty-one Pilots, Imagine Dragons and more) and enjoyed my smoothie.

Arrived on time.

Filled out my Return Patient Form. Took my #WaitingRoomShoePic. Posted to Facebook. Nurse Mary took me back, same intake as always, gave me my gown and left to get Botox.

I had a migraine budding as well as my Pathologic Lethargy. Hence, I was wearing my new pair of Axon Optics I snagged recently on eBay for $75. My back was being a bastard and I had medicated.

Mariah came in the room and we chatted. Small talk about our families and migraine. Then it was time for injections. Nothing unusual.

As usual, I relaxed into my procedure and Mariah poked away. We continued to chat.

But something wasn’t right. I wasn’t feeling right. Mariah moved around to do my forehead. I closed my eyes as usual and followed her directions about frowning. She was done the forehead. I opened my eyes. 

“Mariah I don’t think I’m ok,” I said nonchalantly, “I’m having tunnel vision.” I was covered in sweat already. 

She moved in front of me and calmly braced me from falling out of the chair. She spoke to me quietly and reassuringly.

I know I lost consciousness. She was taking my pulse the whole time. She was saying my name. Calling to me. “It happens all the time. But you’ve never had this reaction?”

“Absolutely not and I’m so sorry.” She assured me there was no need. But I kept apologizing: “I know you have lots of patients; I’m taking too long.” 

My BP was never less than 120/80 which is higher for me. Mariah finished by injecting my jaw. My favorite spots.

This episode felt very similar to my panic attacks…almost identical. Which begs the question: why? Why a panic attack? Was it from migraine?

It took me so long to recover. I stayed in the room awhile. I walked to the waiting room and sat there until Mary suggested I make my next appointment.

I made my next appointment for Botox, got in my car and waited. Then I made the difficult drive home. I was ready to pull over and vomit. But I made it. Couldn’t stop for mail or run an arrand. Made it home.

Crawled into bed. And stayed there. And then my day was done. So dumb.

When I posted about my odd appointment on Facebook:

Not so great today. First time in seven years I passed out cold. Made it home. Bed all day with ice. Chronic Migraines are so fun😄 Hope your Monday is shiny!💜

I received tons of kind, supportive and concerned comments. Which surprised me. Because to me, it was same ol’, same ol’ and not that exciting. Lol. 

Marc asked me later why I didn’t call him to pick me up. Um…I dunno… Probably because that would involve me asking for help. I don’t need help! Help is for other people! Doi!😜

I’ve been dealing with less stable depression of late. Anxiety seems status quo. Sacroiliac is tantruming after being relatively quiet for weeks. I’m ridiculously overweight. I’m lonely. I’m feeling alone. I’m feeling irrelevant. Just part of the road I walk. Things are bothering me more. I’m working hard in EMDR with Shanna. More on that later. I described to Shanna: “It feels like I’m an open head wound walking around my life. More than usual.”


Changes

​”It never occurred to me that one day I’d wake up sick and never get better.”

September 26, 2016:

You constantly look back on events: was this the moment? Was this where things went off track? Then you’re face to face with decisions you can no longer ignore, becuz you’re life has become so impacted by this uninvited stranger. Who am I? What’s the most important things in this life? Are there others like me? Do I accept this? Fight? Cry victim? Struggle struggle struggle…fight fight fight…try everything to reclaim the person you once took advantage of being. And there are tears. You thought you knew about tears before… And there is pain – physical and emotional. You thought you knew about pain before… And there is surviving, just moment to moment. Survive; keep breathing, just move forward. And smile. Becuz you can still smile. So do it. Just do it.

#painawarenessmonth

#chronicthuglife

She wasn’t bitter. She was sad though. But it was a hopeful kind of sad. The kind of sad that just takes time.

In 2013 on this day I was having my third and final set of infusions at Austin Neurocare… My neuro had ordered them because she wanted to make sure I wasn’t in a migraine rebound. The infusions are Magnesium, Depacote, and a steroid. I remember being very hopeful with the treatment (as I always am). They didn’t really do anything. Infusions have never really helped me and I’ve never been in rebound.

Just feeling a bit overwhelmed today. Loneliness and Aloneness. My friends from Tucson threw a big party for one of our friends turning 50. I was not invited. Sure, it’s been 4 years since I moved away, we are probably growing apart and it’s ok and all. But I also wonder if my Chronic pain advocacy makes me harder to tolerate. Friends don’t know what to do with me. Why would they invite me? 😦 It’s not the same; they think I’ve changed. I’m sure I have. And they just don’t find me as appealing anymore.