How to Treat a Housefire

Most of you know by this point that my filter is pretty thin in some aspects--we'll be hitting the ground running on this one.  So, I had a bladder infection recently.  I'd had the symptoms--painful urination, increase in frequency/urges, cloudiness, discoloration (brown means blood sometimes, folks), sharp odor--for almost a week before doing anything about it.  On the one hand, I'm a little mad at myself.  I knew what the problem was and after one, quick lab test, I could be on my way to feeling better.  On the other hand--and this will sound dumb and understandable at the same time--I had other things to do.

 The thing is, I've definitely had a few of these last year.  And I recognized the signs and symptoms then, too.  This wasn't a new discovery, understanding what these symptoms probably meant.  Didn't do anything about them at the time because, well, there were bigger problems at hand.  I went to my primary care physician for the first time in, gosh, I'm not sure how long.  At least five years.  I go to the doctor a lot, but it's always a specialist.  My GP sees a lot of paperwork from me, since I send a copy of my lab reports and all else their direction, but they don't ever really talk to me.  I have on a few occasions held this as an odd point of pride. 

Stay healthy, my friends

And it is occurring to me now that this might be, at least in part, due to some really skewed perspective.  My basis of comparison is pretty messed up. 

When you're treating the equivalent of a housefire, who cares if the sink is overflowing?  A broken closet door isn't nearly as important as a hole in the roof.  Hell, a fire in the bedroom is more important than a flaming, isolated garbage can.  For a long time, now, my body has been that housefire.  A lot of little things just were not as important as salvaging the structural integrity of the metaphorical house. 

In other words, I'm realizing that I didn't go to my GP not because I was never sick but because I had bigger problems that needed different care.  I would still argue, at least, that I was seldom the kind of sick that required my primary care physician, but I can think of at least three more bladder infections (bearing in mind where those fistulas were located and subsequent increase in regional bacteria) that I waited out, drinking as much water as I could and monitoring if it seemed like it was moving to my kidneys.  I was constantly in pain from my rectum--what was a little occasional, minor pain from my urethra?  A new fistula was breaking through my skin--that cavity in my molar was going to have to wait.  I only had so much time and emotional energy to treat the big problems.

What this means is that, weirdly enough, treating bladder infection is a sign that things are going well.  And the fillings that I had the week prior.  And the check-up appointment I have for where one of the fistula sites is still oozing a bit.   I'm feeling an odd mix of overwhelmed/annoyed at having to now attend to these "minor" issues while also relieved that I have the freedom to treat that part of my holistic health, too.  So, it really does seem like things are starting to calm down, relatively speaking.  

This prioritizing has been, and continues to be, a difficult thing to manage.  Symptom triage is a tricky beast.  My experience with Crohn's Disease has never been one problem, a single symptom.  There are always many little things along with it.  And now the rules are changing on me again.

And I've had my doubts in my ability to triage wisely as we've gone along:  I remember waking up from the exam/seton drain placement last summer, where there were many things to think about.  I was trying to pursue all angles of thought while simultaneously refusing to live in a world of "what-ifs" because there always could have been something else, and the choices that I make regarding my health are the best that we could have made based on the information that we knew at the time.  All other components fall under "It just is." Guilt for not acting sooner.  Action vs inaction.  Worry that I hadn't made the right decision.  All in one keenly remembered in an isolated moment, summed up in the reverberating thought "What have I done?"

And as always some decisions are harder than others.  Apart from the fistulas, rectal symptoms, isolated infections, etc., I still need to manage other systems--dental and chiropractor for example--as well as those day-to-day life balances.  Going to the gym or resting?  Eating well or conserving the energy by eating what's available or eating what's emotionally beneficial?  When it's better to save the energy of going out or when I need the spiritual/emotional recharge of being with friends?  I'm not actively dying so can I call off work for this particular barrage of symptoms?  Can I even touch the subject of preventative care in this arena?  

One fire at a time, adding in new pieces as I can stomach them but still a constant push toward betterment.  Talking to those that understand.  Educating those that don't.  Still kicking.  Still balancing the best I can.   

And then something clicked:  I'm still in survival mode.  I thought I was done with it.  But I've been in it for so long that I don't really know what to do out of it.  It's a huge paradigm shift.  I don't know how else to be.  It's not EVERYTHING IS ON FIRE survival mode, but it's still a state of heightened awareness and subsequent anxiety, holding the metaphorical fire extinguisher and frantically pointing it at flickering shadows as I expect the carpet to erupt in flames at any moment.  It's hard to pick up the hammer to fix that closet door or a wrench to fix the overflowing sink when I'm still clinging to the fire extinguisher.  I'm nearly afraid to focus on one aspect too long, that I might fail to check a closet and miss something important.  

I don't know how to turn it off.  

I can see glimpses now, where I can sit on my metaphorical couch and watch TV for a little while, but then I look up and see a project that I hadn't been able to get around to yet.  There's an element of my Self that identifies as the tenacity I have in fighting for myself, if that makes sense.  I'll try again:  part of how I define "Me" is in how I fight this disease, the grit I have in bettering my condition.  It's not Melvin or my disease or being differently-abled that defines me, but how I have chosen to react to it is decidedly an important part of who I am.  I read an article recently that argued that person-first language (i.e. "person with disabilities" as opposed to "disabled person") is inherently problematic in the implication that a "person" is therefore assumed to be able-bodied.  The part that really stuck out to me, though, was the final paragraph--I feel this captures the same sense of what I'm trying to say, that I don't want to be seen without Crohn's because it has, in a sense, made me who I am and all the more deeply human, not human in spite of it.  So, being in this constant battle has become a part of my own identity.

My therapist and I have been talking about a specific symptom of my survival mode on and off for a while now:  I view my body with contempt but I also have separated my body from my sense of Self.  I could not say when this happened, but it makes a certain kind of sense:  I could hate that part, be safely angry at that part of me if I distanced it from Me.  It kept my Emotional Me safe but ultimately has bottled away a lot of latent anger.  This in inherent even in the ways I talk about my body to myself.  "How are you failing me today?"  "**Complex string of expletives**" "Really?  You have to shut down now?"  "I have to fit in another doctor's visit?  Could you...not?"  I love parts of my body; I appreciate how parts of it move and can feel confident in how parts of it look.  It makes complete sense to me how we got here, but this separation is not a good long-term solution.  I need to learn how to embrace all of Me, even the crumbling bits, to respond to my own body needs with compassion instead of frustration and anger. 

There's just a lot of conditioning in the way, yet.  Years of it.  Complete paradigm shifts and retraining.

Addendum on "Went to Ditch your Doctor"

After a couple of discussions after the last blog post, I have one more to add to the list.  I would add this to the sin column, but depending on what the role of that health care professional is for your life, perhaps upgrading to a dealbreaker (i.e. in my case, it would be okay for some doctors but not for my GI doc, for example).

Complacency
I don't want to work with a doctor that fights me every step of the way, where I don't feel that I'm heard/respected, but I also do not want a member of my care team to be completely complacent.  I am pushing for my best health--that needs to be their goal, too.  Not prescribing pain killers to make me quiet or giving me an antibiotic for a viral situation without a good explanation of why this is helping my secondary issues or specific nods to the medicine I take that slows down my immune system.  Similarly, I  would not take my hypothetical child to a pediatrician that allows families to opt out of vaccines for personal reasons--those avoidable diseases will be in that office to infect persons who cannot take the vaccine because of a compromised immune system.  And just to throw out there again, yes, vaccines are perfectly safe barring the very rare instance of some specific allergies.

A physician, nurse, etc that gives me what I want isn't necessarily helping me in the long run.  Actually, I would say flat-out that they are enablers.  I might be out of their hair temporarily, but if they're not going to go along with anything I say, then I'm treating myself.  I happen to know a fair bit about my situation, but what about the next person that walks in?  I hope that these persons will stop flat-out hazardous requests, but, again, what I want is a productive dialogue.  In any other team, a person that just says yes doesn't contribute anything meaningful.  It also means that they're not actually interested in my case, which is not anything I need--it may seem like a convenient temporary fix, but that is not the way I want to be in charge of my health.  

-----
Now, as I was thinking through the original blog post and the need for this addendum, I was thinking through some of the situations that my friends and family have related to me about different healthcare scenarios that they have been in and through.  I have heard stories about shitty doctors.  I have heard stories about places that never responded back.  I have heard stories where I was more angry at the patient than the doctor. 

In fact, I would say that I have a knee-jerk reaction to a lot of these scenarios that I need to sort through, too.  There's a lot of anger there, latent anger from my own experience.  When I'm hearing someone's current woe, there is the part in the back of my mind that immediately jumps in:  I have a lot of preconceived ideas of the "right" way to handle things.  I know at what point I start calling my doctor twice a week and then once a day and then twice a day to get the information I need.  I am the politest, squeakiest wheel.  Insistent but pleasant, with a lot of "how can I help you help me?"  I know logically that there are nuances and reasons for why people approach their medical situations as they do, and that is why I try to put that knee-jerk reaction in check.  But, Lordy, it is there.  Sometimes, I'm furious at the patient or the patient's family for not advocating enough.  Sometimes, I'm furious at the healthcare professional for a sin/dealbreaker against my friend or family member.  I think mostly, though, I'm just angry at the situation and remembering my own frustration.  I try to keep this off of my face the best I can and at least think I'm mostly successful.  This feeling settles into more like a heightened awareness and some compassion by identification as my brain remembers I'm not privy to all the details, but there is that odd case where the anger doesn't go away.  And, to be perfectly clear, I am still happy to listen to someone that needs to talk about these things; bear in mind, though, that if you ask if I have an opinion I definitely do.


I know on a visceral level how exhausting it is to fight for your health.  I have worked very hard to achieve the quality of life that I have.  It is a discouraging, frustrating, and seemingly Sisyphean process.  But I say truly that it is worse for you to be complacent than it is your doctor.  Now, sometimes there are those symptoms that are just going to be what they are--I have a couple of things that aren't going to get better and I accept them with a certain level of annoyed peace, if that makes sense.  Now, that doesn't mean that in another few years I'm not going to ask questions again.  If there was "nothing that can be done," sometimes that means it's time to get a second opinion or forwarded on the University of Chicago or Mayos, especially if that "nothing can be done" was ten years ago--medical science has certainly changed and it is probably overdue for another look.  

Keep fighting the good fight, my friends.  You are worth it.  

When to Ditch your Doctor

Whenever Andy and I are talking about where we'll end up in the world, in the grand scheme of everything, I have an additional factor that I consider that is probably a little unique:  I would like to keep my GI doc for as long as possible.  

My doctor and I have developed a strong doctor-patient relationship.  He knows that when he tells me to rest I won't listen, that I will be on top of calling insurance, and when I say I need to go to the hospital, it's definitely time.  I know that he doesn't want to resort to surgery until we've exhausted everything else, and he will absolutely look into most every question I have.  We have a history.  We have patterns.  And I know that we have a profound respect for the others' opinion.  

I'm struggling to find a good way to articulate how important this is, particularly to anyone who doesn't manage some kind of chronic condition.  My GI (gastrointestinal) doc is my main doctor.  I have a primary care physician (or GP, if you prefer), but I see him maybe once every other year.  By contrast, I go to my GI doc's office every 8 weeks to administer my medication as well as managing bloodwork, phone conversations about those bloodwork results and various other symptoms, arranging and undergoing larger tests (I get a colonoscopy every other year), and otherwise a checkup two to four times a year, depending on the state of my disease.  Aside from my Crohn's, I don't tend to get sick--or when I do, I make it count--or maybe it's just that things don't seem that big of a deal by comparison.  Or perhaps there isn't space for other issues when the flare is too "loud."  I've said glibly more than once that "my immune system is so good it attacks me."  This is both hilarious and sad to me.  There are a few specialty doctor's thrown in there, too, but my GI doc and I get each other in some good ways.  

But it wasn't always that way.  I've had other doctors where our relationship was not so constructive.  There have been a couple now that I have dropped and can't be bothered to feel guilty about it.  One of them is still in the same practice as my GI doc.  This happens.  I don't think most doctors take it personally anyway; that doctor simply wasn't a good fit for me but maybe is a good fit for someone else.  By this point, I have some clear guidelines of what makes a good physician for my needs and what makes a not-so-good physician.  I have a fair bit of patience--an okay doctor is okay, depending on what kinds of purposes and durations of time we'll have with each other--but there are some very real sins and dealbreakers.  The list of what will drive me to seek a different doctor is short, but it is firm.  

Dealbreakers

Danger/Safety Concerns
I had a radiologist once that was to perform a barium enema on me.  It was about as terrible as it sounds.  Firstly, I felt pretty wretched going in there--at that point, if I didn't eat when I was hungry I was going to feel very sick for the rest of the day and I couldn't eat for X amount of time before the test.  I had the ileostomy at that time.  The test was to determine how the tissue was healing between the rectum and the part of reattached colon (loop ileostomy allowed some matter to go through, but not all; more details here).  At that point, my rectum was very inflamed and was starting to become more and more scar tissue than flexible tissue--they had to use a pediatric size for the test and it still hurt like hell.  I will never go back to this particular radiologist.  Andy has instructions to not allow the particular radiologist into the equation if I am unconscious and cannot insist by my own power.  I say this playfully:  radiologists are sadists.  "Hold that extremely uncomfortable/painful position where you feel like you're going to pass out for four more shots.  Don't move."  The real point, though, where I was dead certain that I was never going back to this person was when I had to shout "Woah!  Wrong hole!"  

If I feel that my safety is compromised or that I am in danger, that's a dealbreaker.  Yes, medical procedures are not comfortable and some are full-out painful, but there is still a line.  I had a nurse at Mayos that tried to help me onto a bed by pushing against my fresh incision--that was a mistake that I would not allow her to do again.  If my caretaker has little awareness about the situation, I don't feel that my safety and wellbeing are well met in other necessary ways.  This is not to say that the doctors I've kept have never made mistakes or accidentally harmed me, but there were apologies and an awareness of my feelings/needs in the situation or at least the mistakes were not past a certain level of wrong.  Not applying the testing equipment to the right part of my body, that is definite no.  Laying a careless hand on a fresh wound is a definite no. 

Our previous dentist left Andy alone in the dentist chair for three hours, because they went to start someone else and never came back and they were overbooked, according to them.  He didn't even leave with the fillings he went in for, which our new dentist asserts were not actually necessary.  Yeah, no, we weren't going back there for anything.

I might try to suggest that people find where these lines are for themselves, but I know that I certainly didn't know them until they were crossed.  It's a hard element to pin down.  I don't think I could have anticipated the examples that I mentioned.  But I can at least explain the feeling that it left me with.  Both of the situations I experienced fill me with a lot of anxiety to think back on them, the nurse specifically part of a whole traumatic event, when they put in a surgical drain between my ribs and I had to cooperatively breathe at specific points--I was awake and in a lot of pain before a fat needle was involved.  Andy's example mostly just makes me angry.  In any case, we no longer trusted the person directing our treatment.  That particular feeling of being unsafe has not diminished when I think of those incidents, and the persistence of that anxiety is what has cemented it for me.

Not Listening

This one is a little more complex.  I know that people come into the doctor's office with WebMD print outs and all kinds of ideas about what they have and how to fix it from five minutes of internet searching.  I like to think that my thoughts on my medical care are more informed than that, but I know that the doctor can't always just take my word for it, either.  But I know a lot about my condition and a lot about my body.  I expect the doctor, nurse, etc. to have seen a lot of cases and have a general idea of how to treat it as a result; they know the science and medicine, but I know my body.  I have had more than one rant about a particular medication that many, many doctors have tried to prescribe me that I do not react well to.  Truth be told, no one really does.  If you can muscle through the symptoms, it does its job well, but I'm not a fan of projectile vomiting.  Trying to talk me into a medicine that I know doesn't work well for me and my body chemistry is a red flag.  I feel ignored and that my feelings aren't valid to the "expert" in this case.  No means no.  

When I met my gynecologist and, more recently, my new dentist, they came in clearly having read my chart and history, immediately addressing the elephant in the room, which was how my care was going to be affected by my history with Crohn's.  Both allowed me to say my peace regarding the abridged history of my medical journey and asked questions based on what I told them.  They also brought in specific things that I might need to watch for because of my particular symptom history and even the long-term effects of certain medications.  They listened to my experience.  Subsequently, I am definitely keeping both of these wonderful women in my care team. 

By contrast, I had one specialist recently that ignored my experience, a dermatologist referenced here, that I have been looking into possible alternatives.  The GI doctor that I had previously, that I switched off of, I made that decision when I was eighteen or so.  He never did talk to me like I was in the room.  My father and I were in the exam room for a while, and I was looking at the anatomy chart and conditions listed on a poster.  When the doctor came in, we had some discussion and then he asked if I had any questions.  I asked him something about a condition on the poster.  He finally looked at both my father and I and then asked, "Do you have any questions about your condition?" 

I shut down immediately.  As Dad and I were leaving, I started to broach that I didn't really like that doctor, trying to articulate that I didn't feel comfortable/valued/something.  Dad, perhaps with a touch of relief, asked me if I wanted to switch--he didn't care for him either.  I did feel bad at first about going to a different doctor in the same office, if I'm being honest, worried about running into him.  Dad helped me get over that with some good advice.  

A caretaker that doesn't seem present when they're talking to you is not okay.  Any caretaker that would direct questions about me to my husband, parents, etc. when I'm right there is also not acceptable.  Condescending and/or sexist comments are also not okay.  A caretaker that writes off my pain or symptoms is a definite "no."  In the end, I have to feel that I'm heard.  This doesn't mean that I am right or get my way, but I need to feel that the concerns and ideas that I have brought up were at least heard and addressed.  And this understanding should ideally go both ways, that my healthcare professional can explain the science and reasons why we're pursing a particular path.  

Sins

Staff Issues
Staff members that are not the doctor that display either of the "dealbreaker" components can be a problem, too.  Maybe the physician/medial professional in question is awesome but the support staff is decidedly not.  This, while not desirable, is certainly annoying but as it is not with that primary contact and our time is limited, I can let some of that slide.  They are not who I came to see.  And there's also a place where I can ask for a different person or address these concerns with the caretaker, office manager, etc. 

Not Respecting my Time
The wait time at a doctor's office is stereotypically an issue.  I can think of two specialists that I see that can run a little behind.  But with them both, I know from experience that when I am in there with the medical professional in question I have their full attention.  Whatever questions I have, whatever exams or minor procedures are needed, they are focused on my case in that time.  I expect that they do the same for other persons, which means that sometimes they get a little behind in the day.  However, I do still need to get back to work.  Waiting can be a good thing--it means you're not dying--but when a lack of timeliness becomes a chronic issue, that I expect to wait at least an hour past my time, that's a point of frustration.  I have a fair bit of anxiety about taking time off from work to attend to my medical needs enough as it is.    

Slow on Paperwork/Details
When the insurance company is waiting on one piece and another component hasn't been faxed in yet, this can slow down the whole process.  With how expensive some of my medications are, I MUST have the paperwork in and done before the medication is administered.  We cannot afford to be on the hook for all of it, if something goes sideways with the paperwork.  My GI doctor's office won't administer it without the prior authorization or whathaveyou at least verbally approved from the insurance, though the physical letter (faxed or otherwise) is the preference.  My GI office knows that I'm proactive, calling and making myself annoying--polite and friendly, but persistent.  An office that won't work with me or won't get back to me doesn't stay around long either.  

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I've told people bluntly before about their doctor, based on the concern they've told me to "Drop their ass."  You deserve to be safe.  You deserve to feel heard.  Your time and urgency should be respected.  I know that sometimes health insurance dictates that you need to pick from a small pool or a certain specialist, but it is possible to file for exceptions in certain situations and definitely get a solid primary care physician that can help advocate for you.  Multiple sins can add up to their own dealbreaker, symptoms of not listening can accumulate over a few visits or be a single violation, and there are other scenarios that I have yet to come up with, but theses are still the main components that other issues have ultimately reduce to.   I approach the appointment with the expectation of having a dialogue with a knowledgeable peer rather than an authoritarian dictation.  Some healthcare professionals are okay with this, often appreciative; a small pool of others, I have found, treat questions with contempt.  I don't keep the latter long.  The thing is we have to work together.  I cannot be silent about my symptoms--by definition, no one knows these but me and it is important to communicate them--and I also have to advocate for myself, by asking a lot of questions and being insistent on their answers.  And by contrast, any treatment that healthcare professional might recommend is irrelevant and useless if my cooperation isn't there.  It is a team effort, and I am interested in building a strong, productive team.

That's the key thing to remember--you are a part of your health care team, too.  And I feel it's important to be an active part of your team rather than a passenger.  Remember that this is a mutual relationship to meet your health goals and no one has a greater stake in this than you.  Communicate.  Advocate.  Demand answers.  AND follow the course of treatment that you've agreed on to the best of your ability--take medications on time, actually do the physical therapy, follow-up when needed, and otherwise generally pull your weight.  Assemble your team with thought and then work with it.  

Adulting Achievement Unlocked!

Hey, all!  I have something fun and exciting to share with you today.

Notice anything different about this face? 

I mean, it's a nice face

Whelp.  That is a face of a man free from college debt.  Andy's student loans are completely paid off.  Need another look there? 

Again, totally nice face.

Don't blame you at all for wanting another look.

Notice that the worry around the eyes is incrementally less.  The smile, while indulgent of my shenanigans, has a little edge of relief in it.  

Andy and I have been managing our budget and snowballing our debt a piece at a time.  To hit his milestone as at this point in our lives, with how ridiculously expensive college has become, the irresponsible exploitation of student loans in our society today, and the missing reflection in average wages, is kind of a big deal.  I've been managing the budget and the finances; Andy has been good to remind me that it's okay to give ourselves a reward from time to time, to celebrate the progress we've made, particularly around the arrival of Melvin and subsequent expenses (and short-term disability instead of a normal paycheck)--we could not have made it through that process so smoothly without the help of many wonderful people in our lives.

There are a few new financial goals to tackle next, but we're adding in saving money as part of that, some of which is specifically for whatever adventure we want to tackle next.  It's nice to feel that kind of hope.

...Particularly as we look toward the 42K of debt still attached to my name. 

One step at a time, my friends.

Medical Insurance and "Couponing"

Andy and I were listening to NPR one day on the way to work after lunch and we heard a very interesting story.  The discussion was regarding health insurance companies and some potential changes to plans regarding "couponing."  As we were listening, I quelled the knee-jerk reaction and then settled into burning, righteous anger instead.

I've been trying to find the original article, story, or transcript and have met with limited success (would you believe that searching for "couponing" brings up a lot of interesting ads?).  As such, the following will subsist of two things--explaining what it is and explaining why it's important.

I'm on a medication called Entyvio.  This helps manage my Crohn's Disease and the treatment plan is working pretty well for me so far, meaning that I can live, work, and otherwise contribute to society.  This particular medication is administered via infusion, meaning that I need to be at my doctor's office or hospital to have them start and IV and put the medication directly in my bloodstream over the course of a half hour or so.  I go in for this treatment every eight weeks.  And it does not come cheap--each dose of Entyvio is $8,000, so about a grand a week.  I have the EOB (explanation of benefits) documents from my insurance and bills from the doctor's office to prove it.

Check out this eyesore, from my insurance company

The "Drugs" component is the medication itself.  And, yes, the prices are egregious (more on that here).  The Medical Service, as I understand it, is the doctor's office, the IV materials (tubing, alcohol swabs, gloves, tape, etc.), salene bag, proper disposal of biohazard materials, and the like as well as the staff for the building.  

Andy and I have a deductible of $4,500, after which in-network components are fully covered, but as you can see we reach that $4,500 in a hurry.  Thank goodness for a strong HSA fund which makes it possible if still six shades of frustrating that we have to have it in order to keep me healthy (or out of bankruptcy).  But that's a different rant. 

With me so far?

Okay, I am also signed up with a program called Entyvio Connect.  The folks there are incredibly helpful in working with both my doctors and my insurance to sort out my treatment plan for this medication, making sure that all of the appropriate paperwork is filed, acting almost like a case manager when it comes to sorting out everything for this medication.  Truly, since it is an expensive medication, insurance companies can require some very specific hoops and secret handshakes to sort it all out.  In addition to those services, they also have a copay assistance program.  I've had them explain it to me each time how it works because it sounded too good to be true.  Entyvio Connect, a program in affiliation with the drug manufacture, as I understand it, helps pay for the drug, so persons like me that need these specific and/or weird medications can afford them.  AND that payment that they make still counts toward my deductible.  In other words, I take their medication, they pay for a chunk of it, and I get credit for that in my insurance deductible.  So I might end up paying $350 or so total for that bill, but I am still halfway done with my insurance deductible for the year.  Again, I made sure that this was indeed how it works.  It makes getting my medication and thereby the care I need so much more manageable.  We can save up our HSA funds for things like dental care or new glasses--what a luxury for a millennial! 

Now, backing up a bit, the discussion that was happening on the radio that day, as I understood it, was the insurance company representative didn't want that money from the co-pay program to count toward the patient's deductible anymore.  So that bill was drastically reduced, but that family/individual would still have to meet the full deductible out of their pocket, paying more on future bills instead.  There was an attempt to spin this as helpful to the patient and patient's family, but I still don't understand how paying more could be something helpful to anyone but the insurance company.  Specialty medications can be egregiously expensive (I was on one that was 28K for each dose) and tend to be the places where these kinds of programs exist.  Undoubtedly that individual is going to need additional care besides that one expensive medication (I have another that's $300 a month as well as subsequent labs and doctor visits), and I cannot think of a good reason to increase that burden further.  

I'm still looking for additional articles and conversations about this, because I have to --I cannot afford (in more ways than one) to not be informed.  I'm expensive to keep around, my friends, and acutely aware of it.  The kind of emergency plans and concerns that Andy and I have obsessed over, well, it's definitely had a significant impact on the direction of our lives.  Now that we feel like we're starting to stabilize again, I would really rather not have to plan out holing away another few grand for the next treatment or putting off other treatment in the meanwhile.  If you happen to run into any conversation or resources regarding changes in this kind of policy, I would be appreciative if you could let me know.  And otherwise, I hope that you will watch for your own sake, too.  No one wants to be hit with that surprise when they're sick and/or injured.  Take care of yourselves, my friends.

Some Little Things

I've had a series of small thoughts recently that I wanted to share but none of them seemed to be worth their own post.  As such, here are some vignettes.

• I took a slightly different path than I usually do on the way home from one errand or another and happened to pass by the Meijer off of College Avenue.  The last time I had passed by this way, I noticed that there was a new building popping up.  As I was driving past it this time, I had the distinct thought of "I wonder what new restaurant we're getting."  And I was very confused, then, to read "Sherwin Williams" on the side of the building, at which point I had a good laugh at myself.  Only in Bloomington-Normal, with more restaurants per capita than anywhere else in the world  is it such an easy assumption that all new things that are not obviously residential are new restaurants.  However, the more I tried looking for a quick source for "Most restaurants per capita," the more disappointed I was.  I really couldn't find anything that backed that up for Bloomington-Normal.  We show as "dense" but definitely not in the top much anything.  That was jarring, too, in its own way.  I had heard it from many, many different sources and believed them collectively.  This was and is a point of quirky pride in our big-small town.  It was almost as jarring as when I learned that antibiotics don't do anything against viral infections or that the weird, backwards "G" shape in "Disney" was actually a stylized "D."  There are many, many pieces of common knowledge that I know we as a culture in the Midwest or as Americans or a number of other sub-groupings repeat as fact without thinking much about.  I'm glad this was, at least, a rather innocuous one, but it definitely has my brain going on a few more tangents, asking what other things am I spreading without verifying, particularly after vilifying the online equivalent in a recent post...  We like a good story--so many pieces of "common" knowledge perpetuate because they make an interesting story.
• And speaking of that post, I was using our program the other day to view a client's screen at work so that I could help him through a problem that they had run into.  The program took a little longer than usual to load and show said screen, and it became apparent immediately why that was the case:  they had at least 26 tabs open (yes, I started counting) and every available space on his desktop had a shortcut on it, some with titles indicating that they were at least two years old.  He apologized that his computer was running slowly today, and I bit back any kind of retort, not trusting what I would say, and made some kind of non-committal grunt.  After we saw a successful report and I closed out the program, I took quick stock of how many programs I had open and how many shortcuts I had on my desktop.  How many desktop icons are "acceptable" or at least non-cringeworthy?  This, I think, is one of those lighter faux pas, one that's not a big deal the older you are, but a bigger deal the younger you are, or maybe it's about organizational preferences.  In any case, at least close out any damning material--a friend of mine this last week saw some unsightly images on a client's Twitter (pointedly ignoring them) before they settled into the problem.  If you know that someone is going to be seeing your screen, at least close your Facebook and ANY questionable content.
•  My cousin Neil loves a good villian.  That makes me ridiculously happy.  If the hero isn't "edgy," they're often flat and we're supposed to like them for the sake that they're good.  How boring.  But a complex villain?  That's where things get interesting and is better reflective of the world we live in--nothing is so cut-and-dry.  What breaks a person outside of their moral code?  How did that individual form their morality in the first place?  Why is it so fascinating to know the backstory of the bad guy?  There's all kinds of good psychology to help explain why it fascinates us.  More and more, though, I look at it as a place to practice empathy.  The people that we see as villains in our own lives are the heroes in their own; in fact, people aren't usually against us, they're just for themselves.  So, seeing elements of that kind of thinking, well, that's a good thing to see.  A few years ago, I was watching him play Minecraft, and he showed me a house he built.  The outside looked to be made of wood, but the inside was entirely covered in black wool.  He explained to me:  "See, the outside looks normal but inside there's a deep, dark secret, just like real life."  What a wonderfully profound thought.  I still think about this from time to time.  How much of that we choose to share, the color of our own secrets (are they only black because they're hidden away from the light?), how do others decide what to share and what not to share, etc.  I mean, I've only talked about wrestling with this kind of vulnerability in a half-dozen blog posts...
• My older brother had an interesting encounter the other day.  Now, an important thing to know about David for this story is that he doesn't pick up well on social signals, but he does pay attention in his own ways.  For example, I have needed a couple of blood transfusions over the course of all my Crohn's treatment.  David put together that we have the same blood type (AB+ is pretty rare) and continues to do a beautiful, selfless thing:  David is an active blood donor.  As in, watching the intervals and scheduling when he's able because that was one way he could theoretically help me and consequently others like me.  This touches me very deeply.  And I still smile to get another phone call where he reports another visit to the vampires.  As such, he has a collection of blood donor t-shirts.  Whelp, he happened to be wearing one of these shirts the other day when he answered the door to some Jehovah's Witnesses.  For those not aware, Jehovah's Witness will not give nor accept blood transfusions for religious reasons so David (and I, when he shared the story with me) had a laugh on how that might have been a little awkward.  And then, I wonder, too, about all of the bacon paraphernalia must feel like to our Muslim and Jewish community members.  In trying to think of a good example for something that make the stereotypical Christian feel awkward, I started thinking of evolution.  If someone was wearing a Darwin shirt when a church member hands them a tract, what kinds of thoughts happen in that moment?  For the record, I myself see no contradiction between evolutionary theory and the Bible--I'm of the opinion that God wants to us to think and is not anti-science, that exploring the secrets of our world makes it all the more miraculous.  So, I know that I would look at a t-shirt like that and say, "Right on;" I know a few other people that would take it as an invitation to try and brow-beat the individual into submission.  In the end, both sides can be gracious and allow the other to carry on without "winning."  Let's take this a step further:  there is a difference between choosing not to drink alcohol for yourself because it is against your religious beliefs and refusing to let other people drink because it's against your religious beliefs.  The former is great, making a choice for yourself is expressing your own freedom to do so; the latter is not okay, forcing others to adhere to your choices infringes on the rights of others.  Similarly, laws cannot be made purely on one group's religious beliefs, because that is enforcing one group's beliefs--even a small sect of that group--on the rest of the population.  A number of folk might jump immediately to manufactured fears of Sharia law, but I'm more worried about "the Religious Right"  trying to dictate their perspective on homosexuality on people who don't have that religious belief (i.e. denying equal marriage rights to our LGBTQ community members) or neonazis demonizing non-white people and being excused for hate crimes.  These are happening and are not okay.  

The shirt in question, by the bye

I could stretch any of these into their own post, I suppose, but it didn't seem right to do so today in any case.  Or perhaps I'm thinking about little incidents a little too hard...but it's so fun to do on a rainy afternoon.