Reboot

I’ve been wanting to write for a while now. Unfortunately, the words don’t seem to come. I really want to… 

Ever since the beginning of the COVID-19 it’s almost like I feel lost. It’s almost like I’m stifled. 

I want to write, I want to inspire, I want to but…

The words… won’t… come…

Instead of inspiring, I find myself joking and not at all being serious.

To be honest, I find myself distancing from anything inspiring. I haven’t been reading my Bible. I haven’t been reading the multiple books I own.  I haven’t been reaching out to all my peeps.

I… Haven’t… Been…

I want to, but I haven’t been.

The only thing I can think about to get me out of this funk I’m in is to reboot myself. 

You know, a reboot.  Like when you turn your computer on and off when it’s not working or you shut your phone down when an apps not working correctly. 

I’m not functioning like I should be, so I’m rebooting myself today. 

Stop. 

Reboot. 

Take a step back. 

Be still.  

Now it’s time to go #BeHappy and #FindTheJoy. 

Pray. Always Pray.

There are times dealing with a chronic disease leaves me feeling less than victorious.

I spent a small portion of my yesterday calling specialists.

I was able to schedule an appointment with a new Dr in March, I was told that another Dr has 500 other patients in front of me (no thank you for the wait), that another Dr’s next available appointment is in June (no thank you) and I’m waiting to hear from another tomorrow.

I’m not looking for any ole neurologist.  I’m looking for the best.  I’m looking for those accredited in head pain…. UCNS diplomats.  United Council for Neurologic Specialities.  From UCNS.ORG site:  “Achieving subspecialty certification though the UCNS is the recognition that a physician has met the requirements and standards of knowledge set by experts in the subspecialty and with the oversight of a peer-reviewed process.”  

After trying over 25 meds – preventatives and abortives combined, all on every migraine med site I’ve found….  It’s hard to believe that another Dr will have something new to tell me.  My current and previous neurologists are UCNS certified as well. 

I’ve done it all.  I’ve literally tried it all.  Literally over 25 different medications – preventatives (taken to prevent migraine) and abortives (taken at the onset of a migraine to eliminate or lessen the symptoms).  This is not including alternative treatment like acupuncture and vitamins/minerals.

Okay, maybe the only thing I haven’t tried is some crazy brain surgery.  Um… No thank you.

I don’t want your pity.

I want your prayer.

If you’re not a believer.  Pray anyway.  I’m begging you to pray anyway.

If you’re not a believer or not sure how to pray, you can say the following in your mind or out loud for no other reason other than I need you to say it and that I truly believe it will make a difference:

“Dear Heavenly Father, I am not sure about this, but Sue asked me to pray for her to you.  She believes in you and I am doing this for her.  Please ease her suffering and bring her back to us.  Thank you and in Jesus’ name, amen.”

My Normal

I look normal on the outside.  Walking by me, you would think I was like everyone else.  This weekend at church, walking in with my sunglasses (because I had been crying), favorite boots and jeans (to hopefully make me feel somewhat human), someone said to me, “You always look so glamorous.”  My honest response, “It’s all an act…” as I looked back and then walked toward the auditorium with more tears in my eyes.

Underneath the surface, I am not like everyone.  I have an invisible disease called chronic migraine.  The daily struggles I encounter aren’t what one would consider to be a normal handicap.  

I walk.  I talk.  I laugh.  

I struggle putting sentences together sometimes.  So there are times I may pause or not make sense.

My memory fails me more times than I care to admit.  So I may not remember a conversation or email from the day before.

I have super human sensitivity to light, sound and smell…oh the smells…. 

There are times the sound of crushing a piece of paper or chip bag sounds like dynamite.  There are times when the rushing water from the faucet sounds louder than Niagara Falls. There are times when a pin prick of light in the darkness seems like a super nova.

I often walk around in a fog.  So if I seem ambivalent, it’s not because I don’t care.  It’s because I’m incapable of acknowledging all that is going on around me.

Concentration is a gift I am thankful for on my good days.  If it seems like I’m struggling to listen, it’s because I am struggling and not that what you are saying isn’t important.

I experience some level of head pain daily and sometimes multiple times per day at different levels.  

How do you explain that it feels like an ice pick is coming out of your left eye?  Other than saying that, I’m not sure. It doesn’t burn or throb.  It only exists. 

This disease leaves me exhausted at the end of the day.  If I cancel plans, it’s not because I want to, it’s because I have to.

I hoard candy-canes.  If you see me with one and it’s not Christmas, it’s because the pain is so bad that I’m nauseous.  (Peppermint is a natural anti-nausea remedy)

If I miss work, it’s because I can no longer take the pain another single moment.

I will never “get well”.  My disease is not curable.

I don’t go to the ER because they treat me like a drug addict.

To break a long cycle of pain, I have to sign a waiver for the medication they give me.

I don’t want or expect sympathy.  

I am my worst critic and often blame myself and feel less than worthy. 

I know it’s okay to not be okay.

I pray this disease is not part of my legacy.  

I pray that my daughter, her children and those to come, are not afflicted with this burden.  (Although I know my daughter already suffers from them.)

This is my normal.