Multiple Sclerosis & Chronic Health

The Thing About Chronic Illness…

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…is that there isn’t just one thing about chronic illness.  You don’t plan for it.  You didn’t ask for it.  Yet, you are subject to it.

I have certainly played the victim of my circumstances.  And, I am super harsh on myself for not being one of those amazing “rise abovers” that go on to win Nobel Peace Prizes with their four disability’s, unstable childhood’s, or breaking of addiction’s coupled with a determinate attitude to persevere.  I’m just your average lady, trying to wing it like everyone else.

I am learning.  Willing to be taught.  Call me a slow learner.  Perhaps this is mid-life crisis time?  At 38, I’m no spring chicken.  I can say, with a bit of confidence, that I am getting a bit smarter.  Is that arrogant?  I hope it’s not arrogant.

My internal flight or fight is still easily provoked.  Due to my childhood, it’s still a little trigger happy, launching much quicker than others, I am assuming.  But, now I am able to look past single moments and try to find what is beneficial long-term, instead of what is just, what is right, what is okay in the here and now.  It is in the acute lows, feelings of blame, and moments of potential hope that pass me by that the fight or flight emerges.

This last week revealed some abnormal blood work.  It was this blood work that launched these old questions brand new.  It was this “abnormally normal” blood work that made me fight back fierce tears and realize that there was still a hope inside of me that life could be better.  I didn’t order the lab tests, the office called me back due to my last tests being off a few months ago as part of a wellness check-up.  This time, still off, the doctor disregarded them with no further investigation as to why.  Neutrophils are probably way overrated.  She said very few lab tests are actually indicative of something, most just relative and susceptible to clinical interpretation.  Only a few, such as Potassium, actually indicate something.  So, when you don’t find the standard, you just disregard the value and chalk it up as abnormally normal.  Can I live with that?  Am I a hypochondriac?  Where do I go from here?  So many questions, so few tangible answers.

I’ve come to a point where I know that choices must be made about this super long experience of chronic illness of mine.  A couple of decisions, actually.  I know I am a stubborn human.  As a stubborn human, I have been fighting the circumstance of chronic illness for years.  Lots of them.  About 17.  If you count when I first knew that there was somethin’ fishy going on, it was about 19 years ago.  That makes me gulp hard.  I think of Scooby Doo and the loud “Gulp!” that he would make when he was stuck in a debacle of sorts.

gulp

The thing about my situation that is somewhat unique, is that I lived in this chronic illness wonderland for nearly 14 years without a diagnosis.  The first neurologist I went to told me I was crazy and needed a psychiatrist.  If that doesn’t knock your socks off, I’m not sure what will.  I lacked confidence as it was and to hear this professional, who wasn’t able to find easy answers, disregard me as a nutcase…  man, that caused a lot of damage and still causes me to doubt myself.

The difference between now and then is that I have been diagnosed.  I have seen one neurologist for about 10 years or so, and though she is nice and kind, whether it be the vagueness of it all or the liability or the lack of courage, she was unable to officially diagnose me with anything.  It took a trip to the Mayo Clinic in Arizona to get a diagnosis of Multiple Sclerosis in 2014.  Or, 2015.  No, it was 2014.  Years blurring into years.

The diagnosis wasn’t obvious there, either.  Multiple Sclerosis didn’t come until I expressed, quite desperately, that I would rather be in heaven than live the way I was and a super empathetic resident demanded a spinal tap before I left my three day visitation at the clinic.  The overbooked lumbar-puncture lady suddenly became available and it was this test that confirmed that I was not crazy.  You should know that I had had one of these pokes before and it revealed nothing.  This time, though, a few years later, the oligoclonal bands would be too numerous to overlook.  Another puncture, in 2016, revealed several more bands.

bands

So, it was official.  I was officially diagnosed with Multiple Sclerosis.  My Idaho neurologist will say it is ‘atypical’ or ‘chronic.’  Not following the same patterns that the typically unpredictable disease is supposed to trend toward.  Sometimes, I even get the feeling that she doubts the diagnosis and I fall into this category of “We are treating you, but we aren’t totally sure what you have.”  It does not feel good.  But, at least I am getting some treatment.

By treatment, I mean, I get prescriptions to respond to some of my symptom’s.  Baclofen is for spasticity and helps with pain I get in my arms, back, abs, hips, and legs.  That, in combination with the Ativan, do help my muscles to relax.  I have a pretty rad tremor in both hands, but much worse on my right.   The Baclofen, which I am now taking 20mg 4x daily, helps to settle this tremor down on most days.

I am unable to keep my head in one position for too long.  The rest of me stiffens up, but not as intensely.  My neck and back get super sore from straining one way or another, even for short periods (5-15 minutes).  An example of this, would be needing to sit straight on toward a speaker, stage, or screen if at church or watching TV.  Otherwise, I have to look away a lot, or prop my head on something for support.

My leg pain, which has been my chief complaint for most years, has been helped with the Baclofen, Cymbalta, a Quell tens unit,  and alternating Tylenol and ibuprofen throughout the day.  All of this still does not completely stop the pain.

My arms and legs both get tired quicker than they used to.  I really enjoy walking and try to walk regularly.  A few times I have tried to jog and I notice that my ankles respond by being unwilling to bend to absorb the stride when my foot hits the ground.  It is both a  painful and odd sensation.  “Why aren’t you bending, silly ankle?”  I am super thankful to be walking.  I have experienced a time many years ago of not being able to walk on one leg at all and throughout the years have needed a cane, during super difficult seasons of the disease, to get around.  Canes are not cool.

In addition to treating some of my symptoms, I was also prescribed Copaxone injections as my first MS disease modifying drug.  It was not bad in the beginning and I took the injections well for over one year.   But I slowly developed anticipatory anxiety and huge diversion from the treatment.  I was experiencing a large amount of anxiety in my overall daily grind, so I am not sure if it was just the shot, or a phase of my life.  It was during this phase that I started the Ativan for the anxiety issues and found it helped with other things.  After I struggled for some time with the Copaxone, my doctor prescribed Tecfidera.  It is pill form for fighting MS.  Like the Copaxone, it would not make me feel better, but would hopefully prohibit the disease from progressing.

I was prescribed the Tecfidera a little less than a year ago.  Unfortunately, I was given the full dose at the onset of this pharmaceutical therapy and the thing is, it is super hard on your stomach.  I was feeling sick daily and struggled through it for months before tapering off.  I had escalated issues outside of MS that made not feeling well for several months super inconvenient.  I do want to try this medication again with the appropriate low dose starter package that I did not get before.  I should have already called my neurologist and had this corrected, but life has been difficult outside of MS.  It is difficult to take something that may or may not slow the disease down, and does not offer any feelings of  better’ness now, but actually causes more problems in the present, when you’re already dealing with life and pain and life and more life.

And, that’s the thing with chronic illness, is that there is life beyond it.  Life struggles that everyone faces and you’re doing it with a hand and a foot tied behind your back.  Which, brings me to the whole point of what I was trying to get at eight paragraphs ago…  decisions must be made.

Decisions to accept or to fight.  Do I accept that this is some wonky type of MS that my own neurologist doesn’t feel confident in diagnosing, but is very staunch about treating;  I have not scheduled an annual exam just because I don’t want to be lectured about the Tecfidera.  “Maybe if you took the medication you wouldn’t have more lesions on your brain MRI.”  This came from the medical assistant when we updated my medications last year.  Those same lesions your doctor wouldn’t call MS in the first place?  Are those the lesions we’re talking about?  The ones that were there and have been gaining for 14 years before going out of state to get help?  Are you talking about those lesions?  On top of that, no, I do not want to pay a thousand bucks for another MRI that is abnormally different, but was never enough evidence to help me all these years.  I think I may be bitter.  Regardless,  here I am.

At a point where I know my heart, mind, and spirit need to align to the same purpose.  Accept this for what it is, think it is, have been told it is, or to fight for assurance in my diagnosis and the possibility for a better quality of life.  Will accepting this bring peace or will fighting produce different results?  Is it possible to do both?

As I fervently pray for the right choice to be made clear, my heart reaches out to those in similar situations.  If there is one thing I know, I know it sucks to be in a chronic illness whirlwind where life seems to pass you by while you’re just struggling to hang on and find some joy out of this gig.

When I contemplate my choices from a spiritual standpoint, I wonder what might bring the Savior more glory.  I wonder if the victory is the faith, the perseverance, the hope I have in Him WITHOUT getting the answers I so desperately seek.  Moses did not get to basque in the promised land he strove to get millions of Hebrews to.  I may not see healing this side of heaven.  Can I still believe in an all-powerful, all-knowing God who chooses not to provide my miracle in this earthly life?  Absolutely.  Is it hard?  Absolutely.  The measure of one’s faith is not weighed in the answers they receive, but perhaps, in the solutions that never come and the choice to seek, serve, and love Him, anyways.  With that in mind, I suppose perhaps I was led on this journey only to proclaim that I believe God is good even in the storm.   Even if my life turns out to be one big blessing of a stormy mess or a messy storm, God is still good.

I will continue to pray for clarity on which direction I should take:  surrender in this diagnosis or fight for a solid solution that brings closure to my soul.  I am thankful to serve a God who will answer my prayers, provide me with patience not to rush or question His sovereignty, and to feel loved in circumstances that I wouldn’t choose.

With love and hope to those in familiar trials, may you be blessed with endurance and assured with the salvation that only Jesus can bring, Amen.

~Dana

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

Pain

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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…

 

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.