Days that become years.

 

It would seem that just not too long ago, I was every perception of healthy.  Vibrant, maybe.  Lifelike.  Slowly, things just started to shut off.  Lower tolerance to stress.  To pain.  Less fight.  Fewer emotions.

With a chronic illness like MS, there are no doubt to be emotional and mental battles, trapped in a body that just does not feel well.  On my best day, I have substantial enough pain that I must medicate every couple of hours with both prescription and over the counter meds.  The fatigue comes out of nowhere to collapse the canopies over the top of your perfectly planned days.  It becomes difficult to schedule.  Difficult to see past today.

In February, I had a stomach bug.  I do not vomit.  I am not a vomiteer by nature.  (I totally just made that word up.  Nailed it.)  Wouldn’t you know, that the this flu would hit me, the owner of a flower shop, on the evening and day of Valentine’s.  The thing is, Valentine’s happens once a year.  It’s like the super bowl.  You have to wait a whole season to go at it again if you’re not one of the two teams playing or one of the devoted fans.

So, I start feeling nauseated the afternoon before the big day of love and, to make it even better, this year, this year only, I make a different plan and decide I can make enough flowers in advance to totally wing NOT having to have another florist come on staff.  In theory, and in actuality, it would have worked out perfectly, but I got sick.

Bending over, talking, moving…  all created the sense of nausea.  I was so exhausted from all the hours I had put in before the holiday.  My body ached in places I didn’t realize existed.  It was a true test of God’s stamina and endurance in me.  I worked until three that day and then had to leave my employee and a big group of family and friends in charge to finish the day.  Even though I was so sick, it was such a good day to me (the next day 😉 ).  A major core of the people I love most coming together to help me.  It felt good.

As I recuperated from Valentine’s, I still struggled emotionally and mentally.  I had completed extensive work with my therapist the summer, fall, and some winter before.  We worked a lot on creating a world for me where I felt safe.  I had some worth and some power.  I did put in a lot of time trying to get better from my depression, as much as being a mom, wife, florist, and my budget would allow.  Something was still not clicking, however.

Later in February I would discover that I was really thought to have PTSD.  I had been told this before, but evidently, it didn’t really register.  Silly brain.  The therapist explained to my husband that there are certain triggers that spur my already agitated, anxious body into full battle mode.  As I sat there listening, I felt like such a freak.  Not that she was calling me a freak, but that I really didn’t realize how sick my mind and body were.  Suddenly, nothing became real.  Are any of my feelings real?  Why now?  I was defensive, upset, overwhelmed.  Couldn’t breathe.  I left that appointment early.  I felt ashamed and embarrassed.  I haven’t been back to therapy.

I needed time and space to evaluate things.  To figure out who was safe.  It sounds so silly, but it’s true.  Nowhere in the world feels safe at times, except being alone.

As days faded into weeks, I purchased a great book on trauma, started doing research on PTSD, and started discussing it with some of the people closest to me. It seems that my case is probably complex-PTSD as it was the duration of my childhood.  The trauma occured at critical points in my development and it changed the way my nervous system, my physical and emotional self, my God intended design, would grow and blossom.

Since before my son was born, just over five years ago, I have regressed into a fragment of who I used to be.  I can trace it back now and see where PTSD took over Dana.  Empty and disconnected.  I lost a lot of friendships, could not engage in new relationships and experiences, and have suffered with depression, suicidal thoughts, and more.  I don’t have much of an attention span. I can hardly answer the phone at work and dealing with customers feels like a major ordeal.  Confrontation at any level immediately sends me into “CODE RED, find safety.”  Criticism at any level immediately sends me into “CODE RED, find safety.”  Rejection at any level immediately sends me into “CODE RED, find safety.”  Betraying my trust in the slightest sends me into “CODE RED, find safety.”  What is ‘code red?’  Like, in real life?  This is a real question, as if I heard it in a hospital or grocery store, it might have different meaning.  To me, I’m just sayin’ CODE RED is like, “Immediate danger!  Escape!  Run!  Flee!  Who is safe?”  My heart will be pounding and I will experience something similar to panic.

It is hard to digest that this is what you have become:  A “Code Red” machine.  Always looking for signs of new pain.

In the meantime, my neurologist has consented that she is treating me for Primary Progressive Multiple Sclerosis (PPMS), rather than Relapsing Remitting.  There is a new drug selling in Europe, the first drug targeted at PPMS, that has just been approved by the States.  It is still in trial mode, but is expected to be a viable option soon.  It will not fix what damage has been done, but will delay progression.  I can’t help but wonder how the emotional deficits in my life are not to blame for the physical damage that has been done.  Autoimmune disease.  My body physically attacking itself.  I can’t fix the damage of one while ignoring the other.  So much damage.

I hate damage.  I’m at a juncture of what to do with this damage. Some of it is beyond me to heal.  Like, without the mighty hand of a valiant God, I will not get through this.  Where I go from here and how to get there, God please lead me.  Lord, grant me comfort, peace, healing of body and mind and spirit.  Rejuvenate my broken heart, Lord.  Consume my thoughts with you so that I may not destroy the temple you have created.  May I not be held captive to fear.  May God know my heart. In Jesus name, Amen.

 

 

 

 

 

 

 

 

 

 

Pain

There is something deep and dark and sad within me.  Something that words, man, there aren’t even words to pray.  I start praying, but the words are empty.  They don’t mean much.  Even though I went through this amazing “miracle” cancer procedure with my mama and everything seems like it’s going to be okay, there are still so many hurts in my heart and the presence of God is not felt within me.

I made a hard choice at the flower shop this year and hard choices mean hard roads.  It was a difficult journey coming and going and leaving the shop during one of the most prosperous weeks the shop will see this year so that I could be with my mom during her surgery and recovery.  Without a full-time florist, how do you flower shop, right?  During Mother’s Day week.  A group of awesome angels and Toby geared up to rescue me and I tried, through the miles, to give them direction as much as I also tried to let go.

The experience at UCSD wasn’t just about my mom.  There was this inevitable “break” that would happen at the end of all of it.  Me and her and Oscar’s ceviche and the beach for a few weeks of recovery time.  The biggest break I’ve gotten since my oldest was born 12 years ago.  A break I fought, but a break I realized I needed.  And, just as I succumb to it, it’s scooped away into the emptiness it came from.  And the month turns into just days and I come back late to work early and hard and I’m left feeling well undeserving of rest and quiet and finances and goodness.

That’s the thing with me.  Always unworthy.  I can work hard and get all this seemingly “extra” money, but there is always medical debt. There is always a prescription.  You get one bill paid off and turn around to find eight more.  Lesions scattered across my brain MRI, new lesions, at least five, and I get the call from my neurologist’ assistant, “Everything on your MRI was normal.”  This is not normal.  The radiologist even notes that this is an abnormal presentation of Multiple Sclerosis.  At what point will I really get help?  And how much will that cost?  I’ve invested at least one college education into my health and have no long-term help.  There is no light at the end of the tunnel except that of heaven.

The pain is  everyday.  Sometimes a leg, sometimes an arm, shoulder, neck.  This “Stiff Person Syndrome” thing, that I have positive blood tests for, that nobody will treat me for, is seemingly progressing.  Spasms, cramps, inability to walk far…  no escape.  The only thing that helps it is rest and sleep and there are not enough hours in the day to sleep it off.  Sleep I often wish I won’t wake up from.

I went through this school of hard knocks with ministry, hoping that somehow, being devoted to Him and His word would somehow benefit the rest of my life…  it doesn’t work that way.  Just because you serve, doesn’t mean He offers you protection from the pain.  Just because you love Him, doesn’t mean He will make it easier.  I laughed at scripture, really laughed, that said He was with me holding my right hand.  He is not with me right now.  I often wonder what I’ve done to earn this life and  what I need to do to get Him to help me. I am at a loss.  I can’t even believe His promises because I don’t want to be hurt by His abandonment anymore.  I know I’m not good enough, let’s just, both, settle on that so I can stop trying to love you and you can stop rejecting me, ok?

I cried on my way to church the other day.  A faith choice to go, my feelings telling me I’m going to continue to get hurt chasing after this Jesus, especially here.  The church, my once beloved church, long since feeling like home to me.  A hard reality that I’ve been working on since last October and beyond.  A church, ironically, where my husband is now the associate pastor.

On the day when he serves communion, his first time being approved to do so, was the first time I didn’t take it.  The first time since becoming a Christian eight years ago that I didn’t celebrate in Christ’s death by consuming the bread and juice, a remembrance of Him.  Wouldn’t you know, that I’m in this empty pew, Toby up front to pray over the sacrament, and sure enough the pastor of the church comes to sit by me.  Then, the tray of bread and juice is served to me by two of my loves, my Brucey and Ster, and I have to audibly tell them I’m not partaking.  Then, the pastor’s wife comes to sit by me after she is done helping to distribute communion to the congregation.  The one day I don’t take the elements because I know my heart is long from being right with God,  I have my husband officiating, my pastor and his wife sitting on each side of me, and I can’t even just pass the tray, I have to verbally and shamefully turn it down.  Of course it happened that way.

I probably shouldn’t, but I feel super embarrassed.  Super stupid that the two most meaningful people in the church sat at my right and left while I sat empty handed during one of the most intimate rituals one can partake in for our God.  It was humbling and hard.  My lips didn’t move in worship that morning.  I sat, eyes mostly closed, clenching onto tears.

Sadly, this is most of my days.  Waiting for the pain, always on the defense.  Facebook became one of those places.  Not only because people, good “Christian” people bring me down, but because I gave up on sharing the story, sharing His glory, when I realized that I was only going to continue getting attacked -spiritually, physically, emotionally.  Unable to continue spouting out how great things are, when deep down I didn’t feel loved and protected and hope for the future.  His promises empty.

I am as weak and poor spiritually than I have ever been, even pre-Jesus.  We have enough money to get by, but there isn’t a future of prosperity for us, despite how hard we will have to work.  There is not a doctor in Idaho that can help me and I don’t know who to go to and I’m not wasting anymore of my time or money pursuing empty attempts at getting help. The physical pain is my only constant.

I am at this point that I have to accept that this is life.  I was born to suffer and endure emotional, physical, and financial pain.  I’m at this breaking point where I need to decide if it’s worth it.  Where do I go from here?  There is nowhere to run.  There is no God holding my right hand guiding me to a place where I can be favored like my mom and Toby.  These two.  If I didn’t have them and some of God’s goodness that I was able to breathe in when I’m around them, I probably wouldn’t have any favor at all.  I am both thankful and hurt that I can’t be loved the way they are.  The way things just happen and align for them always.  Not much effort on their behalf.  And, I’m here drowning…  it doesn’t take long before you realize that you’re the one that doesn’t fit into this Kingdom.  And it’s so hard fighting it.  And, I’m tired.  The deep, dark sadness inside of me festers bigger and my worth has wore down to just shreds that once were.

I’m sorry that I am not a source of hope and joy and spiritual enlightenment today or always.  Sometimes, like now, it’s just too hard to fake it anymore.  Pain too close to the surface. Just, too much pain…