Tag Archives: chronic illness

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

 

 

 

 

 

Deeper

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I am one hour and fifteen minutes removed from doing one of the most ridiculous things I never ever thought would do in my life.  I was an adult leader in a  weekend retreat for a group of 12 teens from our church.  We fasted.  Seriously.  I did not eat for approximately 38 hours.  I could have never done that on my own, but in the presence of the kids and the five other adults, it was ridiculously easy.  I ate a bit at lunch, but haven’t been back to the trough, yet.  The realization that nothing is going to satisfy me, even the best food I can think of…  the enjoyment will quickly fade.  

I’m different today than when I left – mentally and emotionally.  I’m different in one way because my perspective on God has changed.  The first night we were there our Not-Youth-Pastor, Hunter, led us in a lesson, worship music, and prayer.  During the prayer he said, “God, we love you.”  I realized quickly in that moment that I didn’t even feel love for God.  I want to serve God, I want to please him, but I’m not sure how to love Him in the right way.  In the way that a daughter ought to love a father.  That should concern me and it does.  I do not know how to fix it right now.  I am willing to learn.  

That night we split up into girls and boys groups and it started to become real about what we were doing.  So, we’re really going to bed hungry?  We’re just going to read the Bible, talk shop, and pray?  For a day and a half?  I did not know what that looked like.  Who does that?  

Saturday morning was quiet.  I could tell that some of the kids were struggling and becoming restless and I was sort of concerned.  Were they able to get passed the hunger, lack of cellular devices, and awkwardness of this retreat and find the Jesus behind it?  I am so happy to say that, YES!  Yes they were able!  It was a day filled with Biblical lessons, life application, inspiration, motivation, and prayer.  My Toby gave a lesson.  I never thought he was more handsome.  I was proud of him.  It wasn’t just delivering his message, but the preparation that I saw him do in the weeks ahead of the retreat.  He is a good man.

My Shannon and I were led by the Lord to make some pretty powerful “prayer stations.”  There were 12 different themes to each station and the kids were asked to go to them and interact with the station.  For instance, there were candles and matches at the “Light” station.  At that station there was scripture of God creating light, Jesus being the light, and how we are a light to others.  The kids were asked to pray and meditate on the scriptures while they considered how their own lives reflected the light of Jesus.  We also had things like forgiveness, strength, wisdom, and discipline.  This could be something easily used in Sunday school or at any revival.  They were fun to make and the Lord worked through them well.  At the “You” station, the kids read about God being their maker and they had play-dough, a globe, and a model-statue thingy.  This activity was really meaningful to me, for some reason.

We did have a few breaks throughout the day and we tried to make it a light atmosphere, but the thing I think I like the most about these kids and their response to this process was – it was not designed to be fun, entertaining, or for their a-musement.  It was a hard core, Jesus in yo’ face, what are you going to do about it challenge.  It would be us leaders that would finally be the ones to crack Saturday evening.  Okay, it wasn’t all leaders, it was me.  

We had read and discussed Elijah relinquishing his spirit to Elisha.  As one generation of leaders to the next, we wanted to pray over the kids in a special and meaningful way.  We each had drawn two kids that we had been praying for leading up to the event.  Even before I got to my first girl, I was crying.  I just knew it would be a hard prayer.  Relinquishing some of my hopes and dreams over to my Kelsie.  Realizing that my time with my hands is limited and that, I am so thankful that I was able to use them to spend time with her at the flower shop.

I am not getting better.  My symptoms of spasticity, tremor, and pain are very difficult to treat.  The progression of my illness into my upper body has really slowed me down.  I am uncomfortable, now, in any position.  I usually don’t sit for too long because my legs ache and now that my upper body is crappin’ out on me, it’s really put me in quite the pickle.  My neck, shoulders, and arms are just tired.  Just lifting my hands up to lay on the kids, was a struggle for me physically.  

I’m normally very excited to go to work and get to “play.”  It is a burden now.  Dana is tired.  I pray for miraculous healing.  I am hopeful that my neurologist will help me.  I get in to see her the 28th.  I can hang on for 23 more days, right?  After that, Toby and I will assess the situation and see if the shop does need to be sold.  It makes me cry.  It might be what the Lord is asking me to do though.  Maybe I have to get rid of the shop to get somewhere else.  I’m just not sure.

Perhaps the most challenging part of the entire weekend was signing an agreement with all the other attendants – a contract, a call, a commission to serve God wholly and completely.  I am good with that.  We were asked to commit to Bible study, devotional time, scripture memorization, and to seek the Lord first everyday.  I am good with that also.  The part that didn’t feel so good was committing to use my suffering for the growth of the Kingdom.  From the outside, it’s like, “Yes!  I will do anything for the Lord!”  But, when you are IN the suffering, you want nothing more than to get out.  

I have been trying to recondition my mind to understand that this illness and the problems it creates can help me and are actually a good thing.  I’ve been trying to accept that healing may never come.  I’ve been living and waiting as though I would feel better someday and as I realize that it may not happen,  I grieve for the dreams and experiences I haven’t had.  I am sad to be limited by this stupid body.  At the same time, I know I can offer the world a completely different perspective on things because of the uniqueness of my walk.  I might help someone.  And, if I can, but instead I choose to sit and feel sorry for myself…  that is not the legacy I want to leave.

The difficulty in signing the agreement, for me, was a few words.  Bryon presented the lesson and gave us a beautiful message on a friend he had lost years ago.  The friend died, full of life and love for the Lord, and his character not only impacted his immediate circle of friends, but generations of family’s now.  The friend, Bryon illustrated, lost all of his lifeblood in one moment.  The rest of us who struggle, serve, and work for the Lord may not lose our blood in one foul swoop, but one drop at a time.  

One drop at a time.  

Can I be okay with that?  For me, to be OK with it would mean that I could face my pain and illness with strength, with a good attitude, and joy.  As it is, I don’t have that mentality about it.  I don’t trust that it will all be OK.  I’m seeing these little droplets of blood everyday and I’m freaking out and well, freaking out isn’t really helping anyways.  But, dang it!  I just wish I had the ability to carry this cross for the Lord with a happy heart.  I want to change in that way.  I want to pursue His will for my life because I know that is the place that I will be used most.  If his will for my life is for me to weaken in body slowly, yet ever so surely, how can I accept that for really reals? 

I am interested to see the ripple effect that continues in me, the other leaders and in the kids.  The retreat is like a big rock getting plunked right in the middle of a quiet pond.  We’ve only just dropped the rock.  The first wave of reaction is in the works and I’m thankful.  I’m tired.  Our prayer as leaders was that this experience might cause a chain reaction that didn’t just end with the teens leading church today, but continues to envelop the kids in their homes, with their family’s, friends, peers and the generations that follow them.

I am thankful that I got to shut the whole world off and focus on God.  That is a rare opportunity.  Happy to be home with my monsters and as I type in my chair, watching all four of them cuddled up on the couch, I have tears.  If this is the only way that I could have them, I would do it all over again.  That makes me glad.