Tag Archives: MS

Days that become years.

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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.

 

 

 

 

 

 

 

 

 

 

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A complicated, beautiful mess.

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I have a moment.  One unoccupied, take advantage of the quiet, moment.  Life is blurrish.

In January, I had the mindset to sell the flower shop.  My beloved.  I was realizing my place was to support Toby and our children and I was feeling defeated in my physical self.  At that time I put the shop on the altar of sacrifice.

Little did I know that February would upend me and despite my notion to sell the shop, I didn’t have time to prepare.  I was trying to run a business, Toby had to be gone for work, Valentine’s Day, I prioritized finding a surgical oncologist for my mom, and then there is house and children and that silly MS thing.  I found myself with no time to organize and inventory and prepare the paperwork for the proper sell of a business.

What is my goal?  Take what I can get and get out quick?  Or, wait, re-stock, re-group, and take the time to sell it well.  I still haven’t finished my research on how to valuate a business.  My business.  My mind is always whirring and positives and negatives both stung me hard.  With all of this cancer talk and not knowing what was to come, I chose to cling to what I knew.  Ultimately, my brain and my heart couldn’t decide if I could lose them both.  My mama and my shop.  If I was going to lose my mom, could I stand to lose the structure that the shop forces me to have?

I’d like to think I was one of those who would just pick up the pieces of life and keep keepin’ on.  But, I know myself.  I know how chronic illness and depression pull you into idleness and days of pain turn into months and years of pain.  Pain, regardless.  I need something to draw me out.  The intention of the shop was to be that place.  But, that place had turned into something to avoid.  Paperwork piling up, behind on bills, taxes overdo, more bills, and all the people…  people I loved with relationships that turned bitter.  Life took a hard twist and friendship was broken and things at the shop aren’t the same.  And, things got more complicated.

The complicated issues of cancer on top of the complicated layer of flower shop on top of the complicated layer of family with three complicated kids on top of the layer of complicated MS on top of the layer of complicated everyday life…  would the fabric of my life be softer without some of these layers?  Could I weave a more fluid life?

I could.  I think I could.

But, then my choices to fight hard would turn into the easy choices of submission.  Submitting to cancer doctors and surgeons who gave my mom up for dead.  Submitting to my presumed future disability instead of doing what I can now.  Submitting to dreams left unfinished.  I know reality, and I know that I may do some of these things in the future.  I know submission can be a beautiful thing when done for the cause of Christ.  With these things, however,  I am not there yet.

We are waiting for biopsies and tumor board meetings and surgery dates for my mom.  She has a very realistic chance at a few more years of life, instead of certain death.  We are fighting hard at the shop to pay off debt, then to restock, then to start growing again, all with the thought of making the business a more valuable asset to sell at the right time.   The right time.  His time.

I’ve been learning about hope.  Hope is trusting in His timing.  And, the thing is, is that if we have hope in God, we have hope in two things.  We have hope that even if cancer hits hard, we are heaven bound because we believe Jesus died to make this possible.  We have a second hope that God isn’t going to leave us hanging.  We may be hanging by a thread sometimes.  A complicated, barely there thread from the complicated fabric of our lives, but we have hope that He won’t leave us that way.  All this hangin’ makes us stronger and soon we are swinging into the next step He has planned for us.  His plan for us to have a good life, a beautifully complicated mess, and have it to the full.  Amen.

 

 

My One Defense

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44.  That is the number of days that I have been on this restrictive gluten-free, sugar-free, fat-free fiasco of a diet.  We’ve (me and Tob) been detoxified and cleansed.  We’ve been vitamin’ed up and herbally enhanced.  We’ve drunk a lot of water.  It’s been good and bad all at once.  The whole purpose and intention for this was to feel better.  A desperate attempt to change the direction of my health.

I wish I could say so many good things.  There are several, actually!  I am mentally and emotionally pleased with myself for accomplishing something hard.  Cutting out sugar is something I would not normally do with sound mind!  I love all the foods that are bad for me.  Getting to the point of being thankful for lightly salted vegetables and brown rice – a beautiful meal for millions in the world – was difficult for me.  Being thankful for the manna.  Will you choose to be thankful, or not?

As far as the effects of the diet on my health; I’m unsure of how this detox and cleanse have impacted my body at this point.  There are a few things I’ve definitely noticed:

1.  I have zero wart on my thumb.  My body was able to fight that off after a year of it being there.

2.  I’ve lost like 10 whole pounds!  My jeans fit better, I’m leaner and within a handful of pounds to my ideal weight.

3.  I’ve completed something I set out to do.

We are sticking with the diet indefinitely.  I know, right?  Who would do that?  It must be doing something, huh?  It’s hard to see the good that it could be doing right now.  I think I will have to give it long-term approval.  I am exhausted.  I was tired when I started this diet and I’m just as tired now, if not more.  Sleepy fatigue.  It is very frustrating.  I want to do so much, but I’m just inexplicably tired.  I’m still at that place where I’m not sure when to sleep and when to fight it.  Lately, sleep has won.  I’ve maintained a regular sleep schedule during this diet, and for most of the year so I’m not sure what more to try in this area.  There is some medication that my neurologist said I can take for the fatigue.  More pills.

My leg pain is steady.  I feel like my left knee and ankle are pretty weak these days, on top of the pain from the spasticity.  I take Baclofen for this and it definitely helps.  However, there is a deeper, wandering aching – almost like a toothache – type of pain that is almost always lurking deep in my legs somewhere.  I say “toothache” because it is often ranges like that annoying pain where you know something is wrong with the tooth all the way to needing a dentist right NOW because of the pain you can’t ignore.

In addition to needing help with the pain and fatigue, I have a few other things that I’m just now starting to personally research.  I have been studying things like “clonus” and how to differentiate benign familial tremor from tremor caused by disease or damage.  The tremor has not lessened.  I feel pretty awkward when I notice people noticing it.  It’s like wearing a bright red Britney Spears latex jump suit.  People notice.  My left hand is the back-up plan.  I’m not very good at making it my dominant hand now, which I probably should be.  It is getting more difficult to write, particularly, signing my name type of stuff.   As luck would have it, my left forearm is crapping out on me!  I’m not joking!  Lefty is the back-up plan and lefty is getting weak.  I’m unsure what this means.  I have an odd sensation of pressure wrapped around a good portion of my forearm.  It “feels” weak.  I think the neurologist felt that my right hand was noticeably weaker than the left at my appointment.  I think we should pray for lefty and possibly righty.  I will not be human if I can’t use my workin’ hands!

Not only will this particular blog serve as super record keeping down the road, it’s also helping me get my thoughts and primary concerns ready for my appointment at the Multiple Sclerosis center of  OHSU in Portland.  That’s right.  I got an appointment!  This June.  I researched the clinic while waiting for all of my paperwork to be filed.  Which is another mystery in and of itself.  My information was faxed over to the clinic in November/December.  I got an appointment with Dr. River, my neurologist here, in January, so I didn’t pursue my application at OHSU as aggressively as I should have.  Meghan, sweet Meghan, reminded me I needed to be brave and after speaking with this angel, I got courage and called the clinic to figure out the status of my junk.  I had to get more information from Dr. River sent, a week went by.  I was laying around the house feeling bad.  Doing nothing.  I called again.  They need more paperwork.  I was totally confused at what other paperwork they could want.  Turns out, my chart was mixed up with someone else’s.  After a very influential phone call from my sister at the doctor’s office here in town, OHSU called to offer me an appointment that very day.  I was so shocked when the lady said she was calling to get me scheduled.  I’m like, ‘Wait, what?  Like, the doctor is going to see me?  OH!  MY! STARS!”  I felt so redeemed.   Thank you, Lord.

The doctor I was randomly paired up with is very knowledgeable in Multiple Sclerosis and Neuroimmunology.  She has special interest in dietary influences on neurological disease processes.  Um, could I not have found her at the most perfect time?  I am totally prepped!  45 days, now, into a variant of the diet she advises for conjunctive MS therapy.  I am so prayerful for this appointment.

At the same time, I am fully aware that I cannot rely on this doctor to fix this mess of mine.  I know I can’t.  I’ve been there before.  I think the best strategy for my brains and my heart going into this is this:  she is a part of my faith journey, a very intentional act of God.  If she helps me, it is with divine guidance and wisdom from Him.  I understand that this may be nothing more than a waste of fuel to drive to Portland, she may not even want to actually talk to me when I get there.  She may be a jerkface.  Regardless of what happens, I will go with the Lord, I will come back with the Lord, I will pray for the Lord’s hand to be in this, to lead me, to help me and to be with my doctor.  My hope can only be in Him.  I am so much closer to believing He is always with me.  Amen.

 

 

T-7

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Who has two beautiful gerbera daisies and gets to see a neurologist next week?

This girl!

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I am relieved and excited!  When I think about it too much I get anxious.  Here’s the thing.

I cannot put all my stock in this neurologist.  I did that with the Mayo Clinic and it was really defeating.  I have to set my mind on Jesus and thank him for the progress that will be made at the doctor next week, whatever that is.  I pray that no matter what I will be joyful, continue praying and have a thankful heart.  I cannot come up with the number of different outcomes that next Tuesday might bring.  Definitely MS and still on a progressive slope?  A different, treatable form of MS?  Not MS at all???  Do I still have to have another spinal tap?  Are there really lesions on the left side of my brain now?  Is that what has caused the dysphagia?  How severely can this problem progress in MS?  What can I expect the tremor to do over the next five years?  Can we do anything for the pain?  Am I crazy?  I almost wish she would tell me I really am actually just crazy and this is a hallucination.

My grandma was 36 when she lost the use of her legs because of her severe and progressive MS.  Her name was Franka.  I didn’t know her as a granddaughter ought to know a grandmother.  I knew her as handicapped, drooling, in a wheelchair, confused.  She was on her horse and my Papa Roy told her to get off and get the gate closed.  He saw the cattle getting out and came over to where she was and she couldn’t move her legs to get off of her horse.

This last month I had my 34th birthday.  That morning I chatted with a friend who happens to have the same birthday as me.  His mom had MS and she died when he was 15.  It’s hard not to be scared of my disease progressing to the state of being paralyzed.  On my 23rd birthday I went to a neurologist because the tremor, muscle fatigue, and pain had all started the November before.  That was the day that he told me that we were first doing a scan for MS.  My scan came out with lesions on it, smaller than would be expected, and the week after that neurologist told me that I was a mental patient.  He said there was nothing wrong with me and that Toby needed to get me to a psychiatrist IMMEDIATELY.  There was screaming and chaos and people gawking.  Straight out of a movie.  Crazy.

Two weeks later, I wake up one day and I fell multiple times trying to stand up out of bed.  I didn’t understand what was going on and I realized I couldn’t bear any weight on my right leg.  It’s not that it was painful or there was something damaged, I just couldn’t walk on it.  I finally figured out how much of a stride I could take and though it wasn’t much, I was not going to waste it.  I called Toby and told him what was going on.  Then, I hobbled down our apartment steps and went walking.  I walked and walked around the busy Boise city blocks surrounding our apartment.  Toby came home from lunch and tracked me down.  From the way I was walking he knew I needed assistance.  We went and bought a cane.  I had to use it for several weeks and then tapered down to months until I finally was strong again.

Sometimes I wonder if I was actually spared.  I really think that if I had laid there in my bed, crying, and grieving I’d still be in bed.  Progressive MS typically starts in older patients and it usually does involve walking difficulties as the onset of the disease.  I wonder, if my choice to get up and walk was honored by God before I even knew Him.

There are so many outcomes of my doctor’s appointment.  So many possibilities.  I’m afraid to hope for comfort.  It may be in God’s will that I am meant to suffer.  We may not be able to slow down or stop this disease from happening.  I am prayerful that whatever the doctor tells me, if she tells me I’m crazy, tells me she can’t do anything, can or cannot give me medication…  whatever it is…  let my hope and my faith and my strength be in my Master and Healer, Christ Jesus.  Please pray for me.

My get up and go might be busted.

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Feeling a bit stuck today.  Not just today but lots of days, but especially today.  Stuck in a sort of good place.

 

I’m puny right now.  Been on the couch quite a bit.  I’m not very good at this “listening to my body” crap and normally I do what I want or have to do regardless of my body.  These days, I feel like I don’t have the gumption to get up and go.  Sucks.  However!  I was stir crazy enough by yesterday evening that I was excited to go to Bible study last night!  That’s a good sign I’ve learned to recognize in myself.  When I *want* to get up and go and have the motivation to do it.  A real good thing.

 

I’ve left my last two shifts at work early.  I sent out a message to get another florist hired to replace me ASAP.  It’s not what I want to do, but it’s what has to be done.  I know who I want to hire.  I’d appreciate prayer that the flower shop continues to thrive, that I am able to give it over to God in every way, and that my team continues to make it happen while I’m absent.  Thankful that my mom is there to oversee a lot of the day to day operations.  Thankful for my Barbara and her loyalty to me over the years.  I love you, B.  Thankful for Shannon, Alexa, Greg, Kelsie, Toby, and D’Ann.  They all make the shop what it is. 

 

Blessed.

 

In an effort to understand God’s love for me, I’ve decided to start documenting stuff about God and His love.  I’ve been wrestling with some ideas.  A lot of us look at “love” as one blanket term.  I’ve learned that with God, love is revealed in different forms.  They even have names that I don’t know how to pronounce.  As a parent, you can identify some of them without knowing that there are scientific psychological scholars who were paid tremendously for making up a word we can’t pronounce, but know is there.

 

See, if you put yer kids in time out, you love them in the way of discipline.  You want them to be better human beings so you choose to punish them to correct behavior.  Welcome to my relationship with God!  Seriously.  I have a lot of discipline left to learn before I am an acceptable human.  I’ve gotten a lot better, but I still need so much refinement in this area.  Doing what needs to be done even if you don’t want to do it.  I suck at discipline.  And, I respond to it in anger toward God, a lot, which He doesn’t really honor so much.  I look at it as rejection and being disliked.  Regardless of how *my* brain interprets things, I think we can all agree that discipline is a difficult form of love. 

 

In contrast, some of the more obvious forms of love – affection, time, and gifts – are the way that most of us have learned to receive love.  When God plays the ole switcheroo and suddenly love is not in the form of provision or protection, but in the form of discipline…  um, it’s a stinky baby.  Ha.  Not that I haven’t been provided for or protected, because I have.  But, the physical withdraw from God and His replacing that physical love with spiritual love, has been very difficult for me to understand.

 

This is how I think God would be talking to me right now. 

 

“Dana, we need to talk.  (*sigh*)  You’re going to sit in time out and think about things because I need you to realize that my love for you hasn’t changed.  I still love you the exact same way I love all of my kids.  But, I want more for you!  It’s ready and it’s yours!  But, you’re going to have to go through some tough crap to get there.  I promise that it’s going to be worth it.  But, I guarantee that at some point you’re going to want out because, girl, the tough stuff hasn’t even started.  Here’s the thing – whether you choose to acknowledge me or not, I’m there.  You can choose joy, because I am there providing you with joy when you have none.  You can choose peace, because I am always there offering my peace when yours is rocked.  You can let go of those negative, scary, anxious thoughts and think about me and my stuff.  My stuff is way more powerful than anything you can contrive.  My stuff, added onto your uniquely made self, is a pretty rad combination.  You are where you are for a reason.  Look at those babies, look at your adorable husband, Toby.  I’ve given these gifts to you.  Look at your beautiful mother and sister.  They may not make it to me, without you.  You need to be here.  You need to get over yourself.  You have a purpose.  You better buck up, pull up your big girl panties, and get’rdone.”

 

Yesterday Toby held the kids and they were all crying over me.  It really sucked.  We all know my health is getting worse and they are so scared.  My throat issue is pretty intense.  It’s actually kind of funny because it feels like the sensation of being choked.  Not painful, just awkward pressure.  I have to gulp extra sometimes.  Food doesn’t seem to bother me as far as choking on it, but I get tired eating meat or cheese type of textures.  Yesterday, it was as though every 30 seconds to two minutes, I get these waves of choking in some parts of my throat or esophagus.  If this is an MS thing, it basically falls on the mercy of our Lord.  I don’t think that there is much in the way of treatment and it’s associated with more severe forms of the disease.  The 28th can’t come soon enough!  My friend, Elise, has some of the same swallowing issues and she is warned against eating alone and stuff.  I’m not ready for those types of restrictions!  Like I would really obey that. 

Anyways, the funny part about it is that my husband is a purple belt (?) in Brazilian Jiu Jitsu.  A big part of this sport is submissions and choke holds.  It is the goal.  It is what Toby works so hard to learn how to execute and what I am seeking so hard on how to avoid.  Irony.  God is grinning right now.

 

Until we know what is next, the girls have been asked to step it up a notch in our home and that is difficult for me.  I know I rely on my Q a lot already.  She doesn’t complain.  Toby doesn’t complain.  Sometimes he gets frustrated, but seeing how statistically men tend to bail ship when the wifey gets sick, it’s pretty profound that he’s still here.  I am not a big ball of sunshine, so the only reason I know I have him is because God loves me. 

 

God loves me enough to give me three amazing, healthy children.

I know God loves me because he blessed me with the best mother on planet earth.

I know God loves me because he gave me D’Ann, aka “thebestbigsisterever”

God loves me enough to bring me the most loving, supportive church family a girl could ask for.

I have a flower shop and more importantly, my Barbara.

I have a house, car(s), and more than I physically need. 

I am blessed enough to have to deal with 1st world problems.

A door opened to get me into my neurologist much sooner than expected.

I know that God loves me because he has taught me to be more obedient with my money which has helped with a lot of stress in my life. 

Today is my real day off.  Which is really a day at home with my babies.  Homeschool.  Housework.  I’m so thankful the Lord has given me a rest.   I could get used to this “love” thing.

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It’s ALIVE!!!

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A few weeks ago my daughter, Quincy, read through Robinson Crusoe for school.  We listened to parts of it on audio and I overheard Robinson say, when he crashed to the shore of the island, “Thank God I am alive.”  I can still hear it plain as day.

“Thank God I am alive.” It wasn’t so much the way it was said, the context, or even the circumstances.  It was my reaction. I immediately thought, “Why would anyone be thankful for that?”

In my mind, death is entry into a place with no pain.  Hear me clearly:  I am not suicidal and I make sure to keep a dialogue going with my husband when I do fall into the ditch of depression.  As much as there is for me here, I can say without hesitation, that I am excited to be in heaven.  Death has no consequence to me.  It is my freedom from this suffering.  I have nothing to lose.

In those moments of realizing just how disconnected I was from this life, I became saddened, angry, and guilty.  It’s not that I am not grateful for the beautiful blessings I have in my life, it’s just harder to appreciate them when you are unwell.  The revelation that I was so beaten down in body and mind and spirit, just flooded me.

I chose to kick things in high gear and be more aggressive than I wanted to be with my application to the neurology department at the Mayo Clinic.  Once and for all, I could face this MS thing and figure it all out for sure.  My case is so atypical and complicated. Is it really MS?  Is it really progressive MS?  Nothing has been easy.

After speaking with my family practitioner, my friends with Mayo Clinic experience, my husband, and doing my own research, I felt confident that if any place could help change my life, it would be the Mayo Clinic.

This brought me so much hope. What if life didn’t have to be painful?  Hope.  Nobody sees how much I can’t do because I’m worn out. Nobody sees how much Toby and the kids have to sacrifice beause I don’t feel well. We don’t get vacations, we get medical tests, treatments, and hospital bills.  My husband works in a job he is amazing at but has no passion for, because of the health insurance we have to have for an illness we can’t treat.  I needed hope.  Big hope.

My prayer life changed over the few weeks we prepared the final paperwork. I felt *IN* my prayers.  Friends prayed, family prayed.  Aaaaaaannnnnnnnnnnnnnd:

I totally got rejected.

I guess I don’t meet the application criteria.  We are not given that information. The letter was extremely vague.  Toby brought it to me at work Saturday afternoon with the saddest eyes.  I left in tears, certain that life was going to suck forever. We had all prayed.  I was asking for a doctor…  how could the Lord deny someone a doctor…  in America?  It seemed like a cruel joke.  Get my hopes up, put myself out there, and then whack me in the knees while everyone is watching.

Is this really the God I believe in?  It rocked my world.  Toby and I talked about doing this life thing with God and without God. Sometimes it feels so much easier to do it without God because how can you explain a father who leaves his only son on a cross to die and blesses his daughter with a life of struggle and pain?

Ultimately, Sunday morning I had to make a choice.  I was up most of the night crying. Thinking I would start getting my business ready for sale, anticipating that in the next few years I would be a vegetable just like my grandma was.  Yay Jesus!  I was irreverent.  Bitter.  Upset.  Guarded.  I felt forgotten, rejected, alone.  “Sure, He is always with us,” say the perfect favored people who never get ditched by God.

Sunday morning Toby and Tripp stayed asleep late.  The girls were routinely taken to church by grandma.  I debated what to do.  Did I want to go to church?  I did not want to be any closer to God.  He was freakin’ me out.  I did, however, find a very curious spot in myself that questioned what Jesus would have done.

I’ve been studying him. The human Jesus.  Trying to understand why I should value what he did, because honestly, it didn’t mean enough to me. I have actually thought, “I didn’t ask him to do it, but I am supposed to be thankful because I get to live a life of pain and misery?  Thanks, Jesus.”

I can only confess these intimate thoughts because my mind has been renewed.  The thing I find inexplicably interesting right now is that I absolutely do not know where I stand with Father God.  But, me and JC are tight.  Is this even possible?  My brain is slow.

After debating a half hour or so, Sunday, I finally decided I would go to church.  But, I wasn’t getting fancy, I wasn’t showing up until service started, and I could not talk to anyone about the Mayo. No eye contact.

I made it to church, puffy eyes, in the middle of a row, perfectly alone.  And then, I spot the gold dishes stacked up in front of the Pastor’s podium and stare them down.  Communion.  Publicly partaking in the bread and juice as a symbol of your acknowledgement in Christ.  The pastor cautioned us that our hearts ought to be right with God before we take communion.  Was I?  My heart was hardened.  My eyes burned with tears for two reasons:  1.  Was I right with God?  and  2. I’m alone.

If you have intention tremor, it is extremely difficult to make visually guided movements with your hands.  The test they use in the neurologist’s office is having the patient use their pointer finger to repetitively touch their nose, the doctor’s finger or pencil tip, and back to their nose.  If the tremor gets worse the closer you get to the target, it’s defined as intentional tremor – it’s only during meaningful, voluntary actions.  Like getting communion cups and breadcrumbs.

Here I am trying to figure out if I should partake or not and, if so, how do I do it?  I decided since I went to church in pursuit of Jesus, I wasn’t completely righteous, but righteous enough to make the choice to participate.  “Righteous enough” was probably not the commitment the Pastor was looking for. But, I decided I was gonna do it.

I glanced at one of the ushers to the left and a lady down the pew from me to the right who walked in late.  Tate was right by me, but that’s like having a giant gorilla in a parka with a badminton racket to rely on.  I finally decided the usher on the left was quickest and I tried to discretely ask her to grab the tray for me.  I whispered that I needed help.  She nodded and smiled and then…   did not move.   As the tray was passed before me I had no choice but to grab it.  I reached for it with my left hand, but as I tried to grab the 1/4″ bread piece, I knocked others off the small dish in the center and I knew I couldn’t get the teeny juice cup.  I switch hands.  It is at that moment of crisis when me, the usher, and my gorilla girl all sort of realize, my tremor is going to spill all of the juice.  My usher-friend realized what I had been asking and stepped right in.  Toby is almost always with me, so this has never been an issue.  But, the more I sat there with my miniature fluted cup and bread…  I felt embarrassed and mad all at once.  I didn’t know how many people behind me saw me shake.  I wonder if they thought I was detoxing.  I sort of hope so now. Fun story.

The experience rubbed me the wrong way and it felt like another one of God’s cruel jokes.  Deny me the very medical help that I need just to take part in Communion.  Frustrated.

My pastor and his wife checked up on us later that day.  I don’t know why.  Nobody has clearly told them how clinically crazy we are.  Messages.  Prayers.  Friends.  By Sunday evening, I felt like I was brushing myself off. Monday I was sad, but in the Word.  Today I took a much needed day off. It was difficult, actually.  I went out this morning almost lost as to what to do. I came home from an errand and felt myself somehow moving forward in an awkward way.

Honestly, I think I’ve got some valid points to be a little pissy.  God has heard an earful.  I can’t tell you if I please Him or appall him. All I can say  is that I am super thankful that mercy trumps judgement because I suck at life and I can’t imagine him liking me.

I felt led by the spirit to write a letter to the radiology group that serviced my last MRI.  I’ve asked for them to explain what I don’t understand. Basically, I need something bad to happen before something good can happen.  The last MRI indicated lesions in both hemispheres.  My 2009 scan only had lesions on the right.  If I do, in fact, have new spots, it will help validate the progression of the disease and open doors to treatment.

Somehow, getting crushed by the medical giant of the Earth doesn’t hurt as bad today.  I think the reason why, is because I made a choice.  Even though I didn’t want to, I went to church.  I chose to take communion. I chose to meet with my small group Monday morning to talk Bible.  I am getting better at handling disappointment as a Christian.  It has been a process.  I am so weak in faith that I feel sort of like a fish out of water when it comes to trusting God’s plan.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” -Romans 15:13

God is my only hope.  By default.   LOL.  And, I’m thinking I’m gonna make it.  I believe in His strength.  I know I am a wiener at all of this.  Who knows?  Maybe I will be miraculously healed.  Maybe I will end up in the care center like Gramma Franka and Toby will come visit me every sunday just like Papa Roy.  Maybe I will never get any better, but never get any worse.  How I handle it, as trite as it sounds, is a choice.  I can choose to allow this illness to come between me and God.  I can decide it’s too hard to get out of bed, too embarrassing to take communion, and too painful to move…  and I will go back to that desolate dark place I came from, shrivel up, and wither away.

I will make a choice.

Thank God I am alive.

The Cure

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I think I’ve decided what I “need.”  I heard this song last night by the Sidewalk Prophets.  It said something about ‘show me you’re a bigger God than I could have ever imagined.’  I also read this blip out of “The Cure” by John Lynch.  The tagline of the book is “When God isn’t who you think he is…  and neither are you.”

I’ve had this vague understanding of who God is in my short walk.  Sometimes I don’t think I fear Him the way I ought to.  My friend Shawna taught me the verbage, “He knows my heart.”  No matter what I say or do, he knows my heart and even if I can’t articulate my conceptions, He hears me.  Sometimes it’s just me who needs to be able to articulate what I am thinking.  Not so much for Him, but for me.

The other night I lay on the floor while Toby tried to massage and stretch out my left arm.  Something is going on.  My shoulder is tender, sore, tires easily.  I am getting cramping throughout the whole arm.  In places it waxes and wanes like a painful toothache.  It seems to be triggered more when I have my arm bent – it does not have to be flexed.  By Saturday, it had built up for 4-5 days.  We’re trying to figure out how to make this pain better and I am at the point of havin’ to do something.  The pain is acute.  I had all three babies naturally, I know what severe pain feels like.

Tears roll from my face to the carpet beneath me as Toby tried to work on my arm.  Tears are welling up in Toby’s eyes and heart.  This is so hard you guys.  I am so beyond tired and frustrated and sad.  I cannot nurture Toby and it’s difficult that I am the cause of his anguish, even if its not my fault. I cry to the Lord, but sometimes it seems that the trials are only getting harder, faster, and more complicated than before.

Lord, hear my cry.  We are not fine.  Sometimes it feels like this life has started at the point of difficulty and then it just got worse with time.  There are times when I see you.  But, there are a lot more times when I don’t see or feel you.  I’ve always felt justified in asking that if this life must be so physically and emotionally painful, that you could make something else easier.  Evidently that’s not your plan.  In case you haven’t noticed, I sort of need you a lot right now.  Big.  I need you to make your presence in my life bigger than I ever could have imagined.  I need some hope to hold on to.  I need a season of peace.  Bless me with your wisdom Lord, that I might use it in every aspect of my life.  Let me find myself living the life of trust and grace in you. Amen.

The last decent issue I had with my health was in July.  It was a similar version of what I’m going through now, but in my right arm.  More in my armpit and shoulder.  The most similar experience that I could relate the pain to was shingles.  I started on the shingles medication right away so I never did break out in the rash.  Now, I’m unsure if it really was shingles or part of my disease process.  July…  August…  September…  October…  November.  It’s building momentum.

I need a really big God.

the cure