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