Wednesday, November 23, 2016

The End of an Era - Changing Doctors

I went to my doctor today, for what will be the last time.  After fighting with different insurance companies for the previous couple years, I finally found myself with no insurance options that would cover my specific doctor.  After checking all my options I ultimately resigned myself to striking out to find a new PCP.

While this may seem insignificant to a lot of people, changing doctors for a "spoonie" is a big deal.  It can take a lot of effort and expense to find a doctor who will take fibromyalgia seriously and have the patience to help you manage it on an individual level for the long run.

I find myself reflecting back on the intense stages of life that my doctor has seen me through, and I can only walk away from the past 4 years thanking God for putting her in my life at exactly the right moment to help me cope and gently walk me through some of the roughest days of my life thus far.  

Each time that I previously thought I would have to give up my doctor, I went through an emotional roller coaster of fear and anxiety, feeling hopeless.  This time, I simply accepted it.  It was time.  As I saw her this afternoon to get a medication refilled and to check in, I was able to thank her for the truly compassionate care I've received from her and the staff.  I broke the news that I would no longer be able to keep coming to their clinic.  In response to my news, she broke her own revelation--that she would be moving on as well to a different clinic.  I thanked her for her help and wished her all the best.

All I can say is--thank you, God, for keeping her there as long as I needed her, and giving me grace for the changes to come.  It's no exaggeration to admit that leaving her office today felt more emotional than leaving my college campus after graduation.  Normal people probably aren't typically that close with their doctors, but when so much of your life is impacted by what happens at the doctor's office, and you find the first person in a white coat who offers a listening ear and believes you when you share your symptoms and struggles--that relationship is not lightly replaced, and I am confident it won't be.  But I have hope that I am now better equipped to be my own advocate in the medical world, and I am ready to face building a new relationship with a new doctor.

Those of you who spend enough time with your doctor to reach first-name basis know the significance of this transition.  For those of you who don't, I genuinely hope you never find out.

Saturday, October 22, 2016

Fibromyalgia and Tattoos


Getting My First Tattoo


Why is it so significant? 

My tattoo in memory of our miscarried child "Kai"

Why does this matter?




Monday, June 6, 2016

The Value of Relationship

I've talked a lot in this blog about the way relationships shift or die out from complications relating to our chronic conditions, but in this post I'd like to discuss the flip-side of that issue.  I'd like to tackle how cultivating deep relationships can actually prove to be a healing aspect on your journey through pain and illness. -ktg-

Pain is a difficult challenge on the best of days, but what many healthy people don't realize is often the most crippling thing about chronic pain is the utter isolation it creates.  When other people your age are off making friends, growing in their chosen career, starting families, and living their lives, you are managing doctor appointments, counting prescriptions to see if you have enough to last to the end of the month, and trying to decide how many spoons you're willing to spend on taking a shower for the day.

This makes meaningful relationships difficult, but they are no less important.  If anything, the extreme strain put on relationships from health problems actually highlights the fact that we are created as social beings.  We are not designed to live by ourselves without a social support structure in place.  We are meant to live in community and share our lives with others as they do with us.

This requires purpose and intentional choices.  Deep, meaningful relationships will not just naturally develop for most people.  You do not suddenly wake up one day and magically find lifelong friends popping up in your yard with the dandelions.  Maintaining and sustaining relationships of this magnitude requires emotional investment, physical presence, gut-wrenching empathy, and in most cases a whole lot of time.  Just because you've known someone's name and address for twenty years does not mean you know them.  Just because you see someone everyday does not make you good friends.  Years of small talk is really just...a whole lot of small talk at the end of the day.  I don't know about you, but I don't feel especially close to people I can only discuss the weather with.  

A difficult reality I am coming to these days is that true friendship is deciding whose struggles you're willing to take part in.  Whose burden are you willing to take a piece of?  Whose hopes and dreams are you willing to listen to for the fiftieth time?  Whose sadness are you willing to weep over?  Whose life do you want to care about?  Whose children do you love like your own?  Who will you spend time getting to know, even if it's hard?  

This is relationship.  This is what truly creates family.  This is what makes those nights of sitting awake at 3am wishing for the comfort of sleep bearable.  This is what makes you continue to sort out the pills when it would be easier to just give up.  This is what makes the "good pain days" worth waiting for.  This is what makes us human.

Tuesday, March 29, 2016

A Psalm for Brain Fog

I was reading through a favorite Psalm recently that has long been a source of comfort and encouragement in rougher periods of my life.  This time, however, something new caught my attention, and it seemed worth sharing with the rest of the Spoonie community since I know we can always use some more encouragement. :)

I am talking about Psalm 131.  I'll include the text below in the ESV so you can see what I'm talking about.

Psalm 131 (ESV)
O LORD, my heart is not lifted up;
my eyes are not raised too high;
I do not occupy myself with things
too great and too marvelous for me.
But I have calmed and quieted my soul,
like a weaned child with its mother;
like a weaned child is my soul within me.

O Israel, hope in the LORD
from this time forth and forevermore.

So, I realize there's a lot there, and I don't really want to take the time to get into the reference to Israel and whether or not the church is "today's Israel."  I would like to simply focus on the similarities being expressed by David and the struggles the chronically ill community faces.

He begins by being honest about his emotions and where he is at.  He is obviously struggling and discouraged by something.  Whatever his struggle is has overwhelmed him, and he is convinced that it is too much for him to handle.  Sound familiar, spoonies?  He is known as one of the Old Testament figures who danced and sang before the Lord in public, but this is obviously not one of those times.  He is deeply troubled, and even as a king and leader of his people there is nothing he can do to make it go away.  I read those words, and no amount of history can keep me from literally feeling that type of struggle.  David knows pain well, and I am not alone in my struggle.  

Moving forward, he talks about not spending his time trying to figure out things that are just too difficult for him to understand.  While you could take this many ways, in the context of his psalm and for our purposes, I think it's fair to say there is correspondence to brain fog.  He may not have struggled with a chronic disease, but all of us who are can readily relate to feeling that there are things (sometimes everyday details) that are too hard for our brain to process that moment.  It really is ok to just set them aside.  Why?  Because like a nursing child who has been satisfied with his mother's milk, all of our stresses and tensions do not rely on us to come up with a solution for them.  

As believers (especially as the walking wounded of chronic conditions) we can rest heavily on the welcoming arms of Jesus who never gets brain fog, never runs out of energy, and never tells us to just "suck it up" or "walk it off."  We can be confident and at rest within our souls, even when our bodies refuse to be rested.  

O Spoonies, hope in the LORD from this time forth and forevermore.

Monday, December 7, 2015

Fibromyalgia and Miscarriage

I'm a little scared to start writing this post, because I honestly don't know what will come out if I start typing. But I feel compelled to write and communicate about this in some way, so here we go...

My husband and I decided to start trying for children in October. It was a big deal for us, because we'd both agreed before marriage that we didn't think children were a good idea for us. The fact that God had turned this decision on its head and brought both of us around to a point of seeing ourselves as parents and desiring it so strongly only convinced us more than ever that it was the right choice. Then, in possibly the shortest season of "trying to conceive" known to mankind, we started celebrating as three at-home pregnancy tests came back positive. It seemed too good to be true; everyone had told us to be patient, that it could take a while. So, they were as shocked as we were when we got pregnant the first month of trying.

We'd been concerned prior to deciding to go forward, because I have fibromyalgia and we weren't sure pregnancy would combine well with that. We also wondered if parenting would be possible for us since my husband is working full-time and I am not reliably healthy enough to run everything on the homefront by myself.

But regardless of these concerns/fears/hesitations, we became convinced that somehow it would work out. Somehow we would beat the odds and getting pregnant so soon seemed like confirmation that we were making the right decision. I was so excited about the positive test results, but I was also told I should visit the doctor and get confirmation.

So I went, and they did tests. The blood test seemed a little low, but we decided it just meant we were a little earlier along than we'd thought. They had me come back three days later just to be safe and test again. And i did come back and test. Thinking little of it, I gave more blood and happily announced to the world that we were parents.

When the test results came back I was devastated. The levels they were checking were supposed to be doubling or tripling but instead they'd fallen by more than half. I couldn't believe it. Reading the message from the doctor I realized slowly that our baby wasn't going to make it. Such a short time into parenthood and we were already losing him. I say him because my husband and my mom both thought it was going to be a boy. Lacking evidence to the contrary that's how I've chosen to remember him as a person. A unique individual. Too beautiful for this world. Conceived in intimate love, and born in heaven with perfect eyes--seeing Jesus at their first glance.

In the aftermath of the test results we waited. It was horrific and miserable waiting for the cramping pain to begin. Less than 24 hours after getting our test results, I woke up early in the morning and felt the first pangs of what would last late into the night and become an endless ordeal of pain and emotion and fear and eventually result in a pseudo-labor that brought out the body of our precious child.

It's hard to explain the emotional ramifications of delivering a baby almost 6 weeks along on your own in the bathroom and putting a tiny face and shape to the concept that has seemed so abstract up to that point. It's even harder to describe the emotions and maternal hormones that drive you to search through bloody tissue in a desperate attempt to find the body of the child you'd already begun to love...only to accidentally destroy it by trying to hold him once to say goodbye.

There aren't words for the depth of brokenness felt afterward. I can only say that I feel irreparably shattered. My heart is incomplete, and I don't know how to get back to a point where it does not ache uncontrollably. There are moments in the day when I finally distract myself sufficiently to put it down for 20 minutes or so, but as soon as the opening credits of the episode begin to roll across the screen, or I sign off from the conversation, within seconds the realization is back. I am a childless mother. My baby was here, and now he's gone. The emotions that follow make you feel like it's all happening again back from the beginning. So it continues each time. Every morning is a moment of forgetting followed by the crushing realization one more time. It's true. It all really happened. He's not coming back.

The comforting aspect to this experience has been realizing just how deeply we are cared for by those who love us. People from all around the world, and specifically close to where we live have reached out to us and grieved with us. Women who have been through this experience themselves, sometimes on multiple occasions, have poured out their deepest heartache in an attempt to share my devastation and ease the way forward.

People have brought us food delivered with a warm hug and tear-stained eyes. They truly are weeping with those who weep. Others have sent notes, messages, cards, and just generally tried to show us that they care and want to help. Still more have spent hours on the phone sitting with us in the silence and reminding us that we are not alone. The depth of compassion that this wound has brought out in our friends and family is almost surreal. When I think I am going to hit the breaking point, someone else steps in and gently pulls me out of it by the hand. This is grace. This is what shows me I will make it through one more night. This is how I know that this darkness won't last forever. These are the people who have been the hands and feet of Jesus to me.

Author's Note: This was written November 17th.

Sunday, November 1, 2015

Last Minute Cancelled Plans and Tackling Goals

Two-part post this time... Enjoy! :)

Cancelled Plans
I was supposed to attend a wedding this past weekend.  I had my tickets for traveling purchased.  I had planned for several months in advance with great anticipation.  This was going to be a very special weekend.  Then fibro decided that my plans needed to change.  I took too long getting over a respiratory flu bug, and followed it up by having a frustrating flareup and taking an additional week to get back on my feet.  By the time I could find the strength to even leave the apartment for a short duration it was crunch time and big decisions had to be made.  I had to choose to go and risk spending the whole time traveling and there being sick or surrender to the flareup and miss the whole thing.  

As you may have guessed from the first line, after great internal debating, I made the disappointing decision not to go.  I have written before about being realistic about the fact that you will have to occasionally cancel your plans due to flareups, but it has been a long while since I have missed anything of this importance for health reasons.  It is easy to say, but not as easy to work through in real life. 

Thankfully, I was still able to see some of the beautiful pictures on facebook and plan to attend a closer reception for the couple later on this year, but it was a stark reminder that there are times when my condition gets the upper hand, and I simply have to make a wise decision no matter how much I want to disregard it and do what I want no matter the consequences.  It's not fun, but it's a fact of living with a chronic condition.  

When you are running short of spoons anyway, you cannot afford to budget yourself into a severe deficit without a contingency plan.  Your supply of spoons is not the federal government, it will not allow you to just keep raising the debt ceiling--at some point you will just crash and cease functioning.  It is always best to avoid this result, but it is particularly problematic if it happens while you are hundreds of miles from home and traveling alone.

Tackling Goals
On the other hand, while it was a discouraging week in regard to physical health and missing out on exciting family events, it has not meant I am crawling in a hole and waiting for the flareup to go away.  I have found that when one aspect of my strength and energy is taxed beyond endurance, rather than ignoring the lack of energy it can be more effective to take the battle to a different front.

In this case, while I have been too sick to do any extensive traveling or even getting out of the apartment much over the past couple weeks, it has been an intensely busy season for my mind.  November 1st marked the beginning of NaNoWriMo which I am participating in for the first time this year. Just for fun I've included an automatic word tracker along the side of this blog that is automatically updated each time my word count goes up, so you can track my progress if you're interested.

I am also working on my first non-fiction book based on this blog that will allow me to dig a little deeper into some of the more helpful posts from the past couple years.  In the middle of all of that are some pretty lofty goals that I have never successfully completed before, and there are some I have never even tried.

It doesn't change the fact that I couldn't make it to the wedding I was hoping to go to, but it does help me keep my brain churning and it does help me practice working towards goals that once seemed impossible.  There's no guarantee that I'll actually finish the 50,000 word goal for NaNoWriMo in the month of November, and there's no assurance that the book based on this blog will ever be a best-seller, but these are two things that have always been goals I wanted to pursue.  

My takeaway from this week has simply been: don't let discouragement in one area keep you from making progress in another.  Make progress where you can.  If you need to slow down in one aspect, start working on something else.  Even if you don't hit your goals, it is good to keep pushing towards them.  If I don't hit the 50k words this year, I will try again next year. :)  The goal is to keep going--whatever that looks like.

Friday, October 2, 2015

Grieving Our Loss


















Saturday, September 12, 2015

Working through Betrayal from your own Body

This may not make a lot of sense to readers who are generally healthy, but for those of you who have been dealing with the emotions and discouragement that accompanies chronic disease for any length of time you will know exactly what I'm talking about.  I'm going talk about those times when we feel betrayed by our own bodies...

You might be reading this thinking--what?  That sounds kind of like an odd thing to say, but let me explain.  Typically a normal person spends the majority of their lifetime being healthy, punctuated with occasional bouts of disease.  In that sense, they depend on their body to have a normal amount of energy for them.  They expect to wake up feeling refreshed after a solid night of sleep, and barring a temporary condition, they can go throughout the majority of their lives without having to think too deeply about whether or not they have enough energy to make it through another day.  Like I said, this is our normal person.  Then you switch to someone whose health is not so normal for whatever reason.

This person spends the majority of their lifetime fighting to get their body to cooperate in order to accomplish the things they need to get done, whether for their job or their family.  They are constantly feeling stressed when people around them expect them to go at a normal productivity rate, and they can't.  Or they feel the social pressure to make plans to go out with friends or family only to have to cancel at the last minute due to feeling like they wish they were dead.  In these cases just described, they wanted to trust that their bodies wouldn't let them down (and by extension those counting on them), but many times that's not how it turned out.  They tried depending on their bodies, and they were disappointed.  Then they were disappointed again and again and again.  

Finally, they just stopped depending on their body to function normally.  They expected it to fail them, because it had done so many times in the past.  They just had to find a way to get things done regardless of their physical pain and fatigue, but that didn't lighten the emotional weariness of having fought for so long only to eventually acknowledge that their body couldn't be trusted.

It might seem like a small part of the fight, but for those of us fighting it, it's not.  The psychological effect of distrusting and eventually expecting your body to give out on you makes it hard to have the confidence to make any plans.  It makes it nearly impossible to hold down a job, and that social life becomes Netflix on the couch with your blanket and pillow (they never get upset with you for cancelling).  

It's hard to explain the relationship between our emotional dependence on our physical health and the damage that is done when we feel betrayed by the body's constant failure.  In a sense, it's like a small child whose parent has repeatedly promised to come watch their sports game only to miss every game of the season for 6 seasons straight.  Eventually the child stops looking for the parent in the stands, and in some cases the child may even lose interest in playing at all.  It becomes more a reminder of the disappointment than a fun diversion.  

That's an imperfect example by far, but certain aspects in it ring true to our situation.  The symbiotic relationship between your mind and body affects a lot of your outlook on life, and if you get to the point where you feel like your body is just waiting for you to make plans so it can fall apart on you, it will make things that much harder to push through.  I can relate to this, because I have struggled with getting very discouraged when things seem to be improving, I make plans, and then I crash--hard.  It feels like my body is actually punishing me for trying to be normal and productive.  I hate it intensely.  But I have found something that can help when I am starting to plummet into hopelessness about feeling like my body and the weather have conspired against me.

I have to remember the truth about this, which is:

1. My body is frail and weak, because of the Fall.  When sin brought the curse on all humanity, my body was affected too.  I try not to think about it a lot, because sometimes it can be frustrating, but in reality this is true for everyone.  Everyone's body is falling apart to some degree or another because of the curse.  No one's body is as God originally designed it.  I am not the only one "falling apart."

2. Even if my body is "conspiring against me" God is more powerful than my body's weakness.  This was an odd way to word it, I know, but I couldn't come up with a better way to say this.  Even assuming that my worst conspiracy theories are true, and my body is getting together with the weather to plan out the worst possible day for me, nothing that happens in my physical health is outside of God's control.  Even if all the forces of nature are aimed against me by the gates of hell (and I realize this is sounding very apocalyptic, but some days, that's how it feels) they are not outside of God's plan for my day.  My body may conspire against me, but God is conspiring for me.  That is a comforting thought in the middle of craziness.

3. Dependence on my body will always end in disappointment. I don't know where in the Old Testament it is, but somewhere there is a verse that discusses some people trusting in the strength of mankind and some trust in the strength of horses, but I will trust in the LORD.  I realize that is probably taken majorly out of context, so don't quote me, but my point is that while it feels good to depend on my body (most people don't even realize they are) my true dependence should be on God not on feeling healthy enough to go through my day the way I want to.  When I'm stuck on feeling "betrayed" I have to remember that I was trusting the wrong thing in the first place.

4. Be sensitive to those around you.  This is more of a side note for those who are living around people who are still processing the sense of hurt and betrayal that their bodies don't work the way they think they should.  Sometimes people assume that chronic pain is only physical, but it goes so much deeper.  Emotions, thoughts, and relationships are all heavily affected by these types of conditions, and a lot of times careless well-meant words can be misplaced and do more harm than good.  All I am asking is that you be sensitive when the sick person in your life tries to share where they are at in their journey.  It may be they have just begun to process this profound sense of intimate betrayal, and they don't have all the words for it yet.  Or they may have been soldiering on through it stoically for years and finally need to acknowledge how much it hurts and how disappointing it has been.  Whatever the case, remember to be kind, gentle and try to listen with a heart that wants to comfort.

Friday, September 4, 2015

Weathering the Relapses





Wednesday, July 1, 2015

To the Caregivers in Our Lives

A lot of the posts on this blog center their attention on our pain, our medications, our hope, our faith, our fatigue, and our daily suffering.  What we don't discuss very often are the people in our lives who help us keep going from day to day--our caregivers.  So, this is a shoutout to the people whose lives have been forever changed by ours, whose strength holds us in our weakness, whose hope reminds us that each day has value, even when we spend them in bed, and whose persistent, compassionate love shows us God's love to us in tangible ways when the pills and pain get to be too much.

In honor of Canada Day, I would like to share some traits about my husband who is Canadian that have strengthened me in this journey.  While marriage under normal circumstances can be stressful, adding a chronic condition to the mix, especially right in the beginning, will have challenges of its own.  It's not been an easy start, but having him along makes the rough parts worth it.  So, consider this a list of some of his character traits that I am grateful for.

He is a constant source of strength to me when I am weak.  One aspect of chronic illness that I hate is constantly feeling my weakness and feeling the fatigue.  It's easy to focus on the fact that I can no longer accomplish things I used to be able to "power through" or things I've always wanted to try are now out of the question, but it is a great comfort to know that even on the days when I have a hard time getting out of bed, Jon is ready to lend all of his strength (and he is a pretty tough Canadian guy, eh) to me at a moment's notice.  If I can't cook dinner or help with laundry or sweep or whatever needs to be done, he is ready to fill in the gap where my ability is lacking.  Also on an emotional level, when I am upset at my status, he is ready to sit with me and let me vent the emotions or cry until his shirt is drenched in my feelings.  He is ready to be my strength, and there are lots of days where I need that.

He is patient with my limitations.  As previously mentioned, there are distinct limitations on my physical energy and strength.  This means that sometimes basic household stuff doesn't get done.  Rather than coming home and looking around at what I haven't finished while he was at work, he is just so glad to see me.  When I need space and time to collect my wits in the morning and prepare myself to face another day, he's willing to back away and give me that space.  There are lots of ways that my condition has become his condition, and rather than venting the inevitable frustration he faces from that back onto me, he is patient and gentle and kind.  

He is constantly looking out for my best interests.  This might sound like an odd thought, but when we are out somewhere and friends ask if we want to go have dinner at a restaurant with them, he is always checking on how I'm doing before just automatically assuming we can go.  If I am seeming tired, he wants to know how I'm doing and what he can do to help me.  When it's time to pick what we're going to eat he wants to make sure that it will not upset my stomach.  Whether it's being my advocate in conversations where I can't think quickly enough to interact because of fibrofog or simply just checking with me before agreeing to make plans that will affect us, he is constantly doing his best to consider my needs and see that they are met.

He is learning my condition.  This one is incredibly special and important when dealing with a caregiver who is also a spouse.  It is good to read and study on the abstract condition that you've been diagnosed with, but to actually study how it affects the person you're caring for emotionally, physically, spiritually, etc. is so much more meaningful.  I can't put into adequate words how good it is to know that someone is not only watching out for you but is also actively working on learning how you function within the specific condition you have.  Somedays Jon knows my tendencies and needs with fibro better than I do, and that's a good thing because I can't remember them anyway.

He loves me--fibro and all.  It's hard to explain to a dating couple or engaged couple or even a healthy married couple, what love looks like for a young couple who are less than two years into marriage and dealing with life altering chronic conditions on a daily basis.  It really does become a third entity in the relationship.  Every situation must take it into account, and nearly every conversation and interaction is affected by it somehow.  Choosing to marry Jon knowing some of the extent to which it would weigh on him was one of the hardest decisions I've ever had to make, and it was one I struggled with extensively.  It didn't feel fair to put this on him, knowing that there was no way to adequately explain my condition to him until he was living with it everyday.  However, even though it makes our life together much more complicated than a lot of other newly-weds I am so glad we went through with our decision.  Fibro with Jon is so much better than fibro before Jon.  I thought I had a rough idea of what love might look like before this, but seeing Jon deal with my condition on a daily basis as if it truly was afflicting his own body--I now feel confident I have a more intimate understanding of what it means to love your spouse.  

To those fighting these conditions with no one by your side -- I am sorry.  I am so so sorry.  I know that so much of the struggle of our conditions is the isolation they bring on us, and it is so much more heavy when there is no one with us at home to carry the load.  I have had some days of my own in this camp, before Jon, and the struggle runs deep.  It can drive us into the ground if we let it.  I think I would say to you who are still in that place, don't let yourself be alone.  I know you can't really choose to just go out and get married or call back your family if they've written you off from misunderstandings of your condition, but there are online communities out there designed to bring support and empathy.  Reach out for help.  Don't let yourself go through this struggle alone.  If you need someone to listen to your battle, I want to be here for you.  You can reach me through the comments or the facebook, twitter, or google+ pages.  Bottom line: we are meant to face these trials together.  This can be the loneliest existence in the world if we let it, so let's choose not to.  Let's take that power back and reach out.  

Happy Canada Day to everyone far and near.  Happy Canada Day particulary to my favorite Canadian :) and to our family who will be celebrating it miles away.  We miss you and will think of you as we celebrate it this year.  Thank you for raising a son who is a strong, gentle caregiver.  He is loved and appreciated.  And to someone I don't say it often enough--Thank you for being my husband, my best friend, and my caregiver.


Friday, June 26, 2015

Afraid to Hope (Trial and Error in Treatment Plans)

Have you ever felt afraid to hope for something?  Something you wanted so desperately that you were afraid to actually start anticipating it in case it didn't?  Remember when you were first diagnosed and everything seemed fresh and new?  All kinds of new ideas poured in from all sides and you were ready to try just about anything now that you had a word for your symptoms and you weren't alone or crazy.  It was a great day!  But after three different diets, endless different types of medications, hot packs, ice packs, different sleep routines, sleep aids, changing around of schedules, trying different specialists, and even several ventures into the homeopathic realm, you just weren't as chipper every time someone came up with a "new miracle cure" for your chronic condition... To be honest, you weren't even up to discussing new ideas for it some days.  If you've ever hit this rut a few months or even a year or so after your diagnosis (or even multiple times since your original diagnosis as different treatments work for a while and then get less effective) then you will understand why tonight I am edgy.

Tomorrow a new medical device arrives in the mail that I am eager to try on the one hand, and terrified to put any hope in on the other.  I have been in some really difficult pain the past few weeks, and this new shot in the dark could just be that, another futile attempt at finding a lasting solution.  But it could also provide so much pain relief without nearly so many over-the-counter pain killers.   So, I am hopeful, but I am also afraid.  I am afraid to have this hope.  Afraid I will be let down and in being let down, that I will feel guilty for even hoping to begin with.  That can be a hazard when dealing with a chronic condition such as fibro or RA or lupus.  It's easy to feel as though your body has betrayed you when something doesn't work.  It's easy to get discouraged when a treatment doesn't help you as much as it helped the 10 other people who suggested it.  It's hard to walk that fine line between perpetual skepticism and gullibility without living on a roller coaster of emotional ups and downs.  Working through all of this with my husband has given me a few thoughts to share on trying to work through these types of emotions and decisions without becoming a victim of your body.

1. Don't attempt any new trial-and-error treatments unless you are emotionally prepared to deal with whatever the outcome will be (effective or complete failure).  This might sound odd, but it can actually be better to just stay with what you can predict than to risk making things worse if you are not ready to deal with that possibility.  Take an account of yourself before proceeding with anything new.

2. Always consult with your spouse or anybody you live with (or any caretakers) before changing your treatment plan.  It can be easy with a chronic condition to fall into tunnel vision and think that your condition only affects you, but it's important to realize that your health actually affects a great deal of other people, most directly your immediate family and those you live with as well as those who may not live with you but take care of you on a daily basis.  Before making any drastic changes or decisions about your treatment regimen, it is a good idea to check with those who live with you.  Not only should they get input on the decision, but they may be able to give you feedback on aspects of your condition that you aren't aware of.

3. Don't try more than one or two new things at the same time.  There are a lot of options out there when it comes to trying new treatments.  It is usually best to only change one or two things at a time in order to be able to tell if any improvement or digression is from what you changed.  If you completely change everything overnight, it can be very hard to tell what's helping and what's not made a difference at all.  Change things slowly.

4. Don't be afraid to hope for improvement.  This one strikes a chord with me personally the most.  I have found that being several years into my diagnosis now, I am very often hesitant to try anything new that I read about online or hear about through other people.  One reason is that fear I mentioned earlier, but I also find that sometimes I just feel bombarded with solutions and suggestions from people who don't have my condition who want to be helpful.  While I appreciate their sentiments, it sometimes has the effect of making me feel that they see my condition as being my own fault.

The nature of fibro is to get better for a short time and then unexpectedly get flareups from time to time.  Over time the condition typically progresses to more and more severe symptoms.  With this knowledge, I often struggle with losing hope that things will ever be better.  It's easy to feel they will just get worse, but I have to fight the idea that it's ok to just give in to those feelings.  Occasionally, it's a good idea to take a chance and try something new.  So, this is me, trying something new.  Tomorrow, it should arrive in the mail.  I've ordered a Quell unit from, and I'm hopeful that it will be effective in improving my quality of life without more drugs.  Whatever new treatment options you are given the chance to try, don't be afraid to hope for some improvement as technology and medical sciences advance.  But, beyond that, remember that our ultimate hope is not in medicine or even in pain relief.  Our ultimate hope lies in Jesus, and no amount of pain can take that away.  Because of Him, I can walk through that fear and hope anyway.  If it works, that would be great.  If it doesn't, I'll still be ok. 

grace and peace to everyone out there in pain <3

Thursday, June 11, 2015

To Medicate or Not to Medicate

 Finally we reach the topic that seems to bring out the worst from all sides--medication.  It seems that some of the most genteel and compassionate people can sometimes unleash their claws when doctors and medications are mentioned whether in favour of them or in harsh anger against them.  It seems to be a trend these days to forsake medical professionals in the name of "all things natural" and "natural is always better" ideology.  While I have an appreciation for some natural remedies and don't want to be disrespectful to those who practice them on a regular basis, I do feel the need to explain more extensively why my husband and I have made the decision to pursue a more traditional medical doctor in treating my fibromyalgia and why I do not hold that "natural" is necessarily better.  Please do not consider this a rant against natural or home remedies, merely an apologetic to open up more honest discussion for both sides.

As a young teenager I had very little confidence in medical doctors.  I don't mean to imply that I didn't think they could be good at their job, but I didn't have a very consistent relationship with my personal doctor and tried my best to avoid doctor visits whenever possible.  Doctors weren't someone you saw often enough to confide in or show weakness to or even complain to.  Doctors were the ones you went to in order to get physical forms signed off or in the rare case of being so sick your school might tell you to stay home until you got a doctor to (again) sign off.  Most diseases were to be suffered through until you felt better, not worth spending money on a doctor visit.  If something unexpected happened in your health, the first response was to call around to people you knew who had various levels of experience with the healthcare profession who wouldn't charge.  A doctor was always a last resort.  So, I understand people coming to the table with little or no trust and confidence built up in their doctor/patient relationship.

I also had limited experience with chiropractors.  I'd only been to one extensively, and I had very limited symptoms before starting those "adjustments."  This doctor/patient began and soon had me sitting through seminars designed to destroy whatever small trust I'd still held for traditional doctors and medical professionals.  I was given X rays at the chiropractor's office and told that my problems were severe, even though they didn't feel so at the time.  After the first several adjustments the pain did become severe, but I was told I was getting better, so I kept going.  This continued for several years.  To this day that pain is still present.  I no longer frequent a chiropractor, but I have been there as well.

As a young adult, I decided to give doctors another chance and struck out to find my own primary care physician.  It was a difficult decision and left me afraid and anxious wondering if anyone would listen to me, and if there was anyone I could trust with the unexplained pain and fatigue and headaches.  I had yet another migraine headache and decided to start a relationship with a new doctor.  What I found in the world of "being an adult and choosing your own doctor" was an amazing world of finding someone you could trust.  I found a caring, compassionate, professional woman who could handle the most awkward, embarrassing, scary, confidential information I could give her.  

So, when test after test came back negative and the only diagnosis I came back with from the referred Rheumatologist was Fibromyalgia, I started getting advice and prescriptions from my newfound confidante and doctor on dealing with this condition.  She became an expert I could bounce ideas and my own research off of.  She became a trusted "friend" I could confide my bad flare-ups in, and when the pain got really bad she was the one I could go to and ask for some temporary help to get me through the worst points of it.   When my brain struggled with obsessive thinking patterns, she's the one who helped me navigate a medication that gave me back control over that thinking, and when I just needed to tell someone my struggle with this disease.  She was there to listen.

Current Perspective
That was the beginning.  I've now been with her for several years, worked through trial and error on several different treatment plans that include medication, vitamins, exercise, sleep patterns, and more.  She's been a steady source of support and advice for me on the journey of walking through the pain and flare-ups.  I understand that hasn't been everyone's experience with doctors.  I also know that not all doctors are good listeners or humble enough to be upfront when they don't really know an answer.  Finding a good doctor is not an easy task, and I won't oversimplify the up's and down's that go along with this process.  Navigating the medical insurance isn't any easier, particularly with Obamacare and rising healthcare costs.  It can be expensive and emotionally taxing to say the least.  Medications can be costly, depending on your insurance.  These are not easy issues to make wise decisions on.  However...

Here's where it gets a little less anecdotal and a little more controversial--

Moral Implications
I understand that there are many varying reasons that some people decide not to use traditional medicine for their conditions or genuinely can't find the answers they need from it.  It is often not an easy decision to make the step away from traditional Western medicine.  What I find disheartening is when some of these same people decide that their personal medical decisions (whether using essential oils, a chiropractor, homeopathic remedies, or traditional Chinese medicine, etc.) are morally superior or intellectually above the common person choosing to use a traditional doctor.  

People's experiences in this area will be vastly different depending on your personal health, your body's chemistry, your background experiences, your family history, the area of the country you live in, and even your personality.  It is unrealistic to expect every other person to be held to your method of dealing with disease and health, and unkind to judge other people's health choices by your own decisions.  If you find a certain diet, in conjunction with supplements, helps your pain, go for it.  If you opt for acupuncture and yoga, and it helps--awesome.  If essential oils and a combination of vitamins make your flareups better, go in peace and keep it up.  If you find that your treatment plan includes some strong prescriptions and traditional medical doctors, blessings.  This is not one size fits all.  It doesn't have to be.

It is not morally superior to choose one diet over another.  It is not a mark of your extreme intelligence or your family's great achievement that you follow one specific health regimen over another or refuse to use over-the-counter pain relievers.  It doesn't make you wrong to choose alternative treatments, either.  The Bible does not give us specifics when it comes to our physical health.  As such, we rely on principles and wisdom to make the best decisions we can with the information we have and the resources available to us.  It is unkind and unhelpful to treat others poorly or snub them because they have made the best decision they can for their situation and it does not match the decision you would have made in a similar situation.   This is a wisdom issue, not one of morality.

Concluding Thoughts
So, how can we apply these thoughts to our everyday conversations and interactions with others as we all try to stay as healthy as possible and just show Christ in our basic pursuit of being well?  Here are some practical thoughts I came up with.

1. Show grace when others' medical decisions make no sense to you.  Allow others the courtesy to make their own decisions and love them the same.  Don't make them feel the need to defend or justify their decisions to you.  It's likely they put a great deal of thought into it.  Give them that benefit of the doubt.  Going on serious medication is a big decision, and a lot of people have serious fear and doubt about making that decision because of the backlash they face when others find out.

2. Be kind when engaging in public conversation about debated medical practices.  Some people are very concerned about the dangers of vaccines; others are scared of the results of not getting them.  Realize that both sides have reasoning for their positions and deserve respect.  There are people involved, not just ideas.

3. Promote without bragging.  It's not wrong to encourage others to consider the health choices you've made.  Just try to do it without making others feel like trash for not necessarily agreeing with you.

4. Practice Healthcare Universalism.  This will probably be most difficult for those of us who cling to absolute Truth, because just the term "Universalism" seems to bring out a perpetual twitch.  By this I simply mean, in the world of health, what works for me may not work for you.  Keep in mind, there is A LOT we still don't know about how the body and mind work.  The test is not whether it matches my definition of good healthcare, but whether or not it is working to improve your quality of life.  This is healthcare, not religion.

5.  Be open to listening to others, without feeling the need to correct their choices and opinions.  Don't shutdown discussions with others whose experiences don't match yours.  If you find yourself in a conversation with someone who had a good experience where you had a bad one, consider it an opportunity to learn and grow, not something that needs to be corrected and stopped.  Their experience doesn't invalidate yours and vice versa.  

6. Recognize and acknowledge the unknowns.  Fibromyalgia is still not narrowed down to one specific root cause, and no known cure exists.  More so than even typical health issues, Fibro often comes down to individualized treatment plans that address the issues most significant to the patient.  Don't berate someone for doing their best to deal with their situation.  After numerous attempts at trial and error, it gets really discouraging to finally have some progress with your treatment only to have someone come along and lecture you for not pursuing the "right" treatment.

Friday, June 5, 2015

Stretching the Limits and Facing Your Fears

I had the opportunity to travel across the country this past week for a special graduation celebration. *Shoutout to Rachel! Congratulations!*  As a part of the trip, which even most "normally healthy" people would find exhausting, there were some fun extras that got thrown in.  Some were physically taxing and others were less so.  One such endeavour was hiking through a canyon in Idaho.  As a Midwesterner, I can attest that our version of "hiking" is very different and involves some moderate hills with a few lakes if you're lucky and in the right part of the state.  We do not have cliffs, canyons, massive rocks, and certainly not most of the nature you'll see in the posted pictures.  When the hiking trip was originally brought up, I'll admit I was a bit intimidated at the prospect of a "real western hike."  What if I was too weak?  What if I slowed everyone else down or couldn't finish?  What if it made me too sick to do anything else the rest of the trip?  

Box Canyon, Idaho
Ultimately, against the advice of even my closest friend around I decided to try.  I wasn't going to miss this chance to spend the day with the group or the chance to have hiked a real, proper canyon.  I tried to mentally prepare myself for the challenge and got as many details as possible from people who'd gone on this hike before so I knew what to expect and where the worst challenges might be.  It was somewhat helpful, though it did make me wonder if I had made the right decision or not.  Even on the drive out to the canyon I was still wondering if I should have just stayed at the hotel and rested for a few more hours...

The hike itself was physically draining, and there were points where I could feel my spoons fleeing me by the handfuls instead of being carefully portioned out.  My knees were woefully unprepared for the steep climb down and up, and breathing became a little difficult at points when the rain came and we were trying to hurry back the way we'd come to avoid the mud for the worst parts.  

When we finally came back to the top of the canyon and looked down the steep face of rocks where I'd just been struggling to get back out, I was awestruck.  I could barely believe that I had really conquered this personal equivalent of a marathon and lived to tell about it.  I was so relieved and happy from the experience and the fun company and the great pictures, that I was ready to tell the world I HIKED THROUGH A REAL CANYON!  Then I stopped.  Wave after wave of exhaustion hit me, and I had to sit on a rock until I could breathe deeply enough and my knees would stop shaking enough that I could walk back to the cars.  Should I really tell people?  Would anyone even believe me?  Worse, would they think my fibro was all a big joke?  Surely if I could hike through a legitimate canyon I could work in a normal job like everyone else and maintain a normal lifestyle.  Sick people were supposed to always be sick.  Sick people weren't supposed to test those limits or they risked losing what little understanding may have been extended to them.  Was it really worth it?

This probably seems like an odd response to having just hiked through such beautiful surroundings for the first time, but to anyone who has ever struggled with an invisible illness that makes everyday life a struggle and has to take great care in each choice to expend their energy, it makes a lot of sense.  Hiking that canyon was a big deal for me.  It was something that I honestly didn't know I could do, and common sense said I couldn't.  It was a challenge that took me to the end of my strength and energy and pain tolerance, but it also showed me such natural beauty and outdoor solitude and opportunity for deep and meaningful conversation with good company.  For me, it meant a lot to finish, even if it took what energy I had left.  

After living with fibro for a while now, it's easy to forget or ignore the limits and pay for it later.  It's also easy to flip to the other side of the spectrum and become afraid of planning to have energy and then running out of it too early.  The problem is, if you only ever plan to have the minimum amount of energy, you won't be able to do anything.  The hard part is learning to aim for the middle--to know when to aim high and when to aim lower, and how to somehow land between the two often enough that you don't sabotage your own health or become a recluse.  

As a chronically ill Christian, it's easy to only push yourself for "ministry-related" activities and to limit yourself when it comes to your personal life, but while your body needs rest, it also needs to be reminded occasionally that you are still alive, and God hasn't made you sick to punish you.  

So, when you can go out and do things (like climb a mountain or watch a movie) do it.  Push yourself occasionally and see what happens.  You won't regret those memories or conversations.  But, don't let other people make you feel guilty for the times when you just can't do it.  You will have days when your body can't handle getting off the couch, and then there are days when you can literally hike through canyons.  When you can hike--hike.  When you can't get off the couch--don't.  Don't be afraid to know your limits, and don't be afraid to occasionally push them. (Remember, guys, I said OCCASIONALLY...)

<3 g&p