Tuesday, January 24, 2017
If we are facebook friends IRL (as the kids say), this post will sound familiar... It comes from recent doctor appointment and processing through the reasons I really wanted to push back on some of the things he said.
What he said was basically this -- that there's a lot medicine doesn't know; that there probably isn't a good, solid diagnosis out there to find; that even if there was, there probably isn't anything medicine can do to help me.
And here's the thing -- this wasn't the first time a medical professional has hinted that trying to find answers would be a fools errand; that I'd be better off just accepting life in limbo.
I'm approaching year three of the first trip to the ER that official kicked off life with This Crazy Illness. Three years into this.... So at this point I think it's safe to say that I'm probably not going to wake up tomorrow and just magically be well. This is what life is, for the foreseeable future.
Except that I'm not sure that's true, either -- after believing things had stabilized, and that we had a good sense of what things were, last summer the symptoms changed again. Nerve pain spread to my left side for the first time. I began having a much harder time recovering from big events. I'm not able to leave the house as much.... it goes on and on. Basically: since last summer, things have been going downhill.
The other thing, is that if you look at my medical records it looks like I've been through the gauntlet in terms of testing. My medical records are filled with tons of test results.
But none of them all that recent. I actually had very few tests in 2016. One or two major ones, but the last half the year was especially quiet. So almost everything is from before I started going downhill again.
Also, no-one has actually sat down with all of these records and tried to put them together. I have information in 6 different medical portals. My PCP has most of these, but if you think she has time to wade through and try to match up tests and dates, you have gravely misunderstood what the life of a doctor is like, and how much time they have to spend on patients.
So. What I don't think this doctor gave enough weight to was that I've been sick with a life-altering illness for several years, the illness is progressing, and we haven't been actively looking for an answer for the better part of a year.
Every doctor visit feels like I'm spinning my wheels -- a waste of time, energy, and emotional well-being. A deeper, more meaningful diagnosis would not magically fix everything, but even if it was rare, not well understood, and without many treatment options, I still feel it would be quality-of-life-changing in a number of ways.
These are some of the reasons I wish medical professionals would not try to dissuade any patient from seeking a better understanding of their health:
1. Tangible support
Even if someone has a rare (or not-so-rare) disease, without a great set of treatment options, there is still a LOT out there, in terms of help and support.
A diagnosis means being able to connect locally, regionally, and internationally with others in the same boat. It means being able to leverage knowledge-sharing from well-funded groups. It means benefiting from local organizations that provide tangible support.
A diagnosis can put you in touch with all sorts of resources, specifically there to help you just because of this new label you're given.
Physical Therapists who would know what to do with my balance issues. (I went through 3 who kept treating me like an athlete who just needed to power-through some strength training.)
Or info about mobility devices (NO doctor or therapist has provided helpful guidance on this, my only good sources of information have been from online communities).
And there are groups that help guide patients with specific diseases to specific specialists, meanwhile I've wasted time with doctors who don't seem to have any interest in a patient who has anything more complicated than the flu.
Without a diagnosis, you have to figure everything out completely on your own, with no benefit from anyone who has walked the same path before you.
2. New research
The amount of medical research going on right now is incredible - investigative research as well as clinical trials. If you're diagnosed with a disease about which very little is understood, and very little treatment options exist, in one to five years that reality could be incredibly different.
It's easy to say 'well a diagnosis for X won't get you anywhere, anyways. It's not like they can do anything about it.' But take a look at clinicaltrials.gov and then get back to me.
If I know what to call this illness -- more importantly - if my doctor knows -- then we can keep a close watch on research studies, try to gain access to clinical trials, and hopefully be ahead of the curve when the next breakthrough arrives.
Or better yet, be a part of the process that brings that breakthrough about.
3. Words to give to medical professionals
More than anything, right now I am just exhausted. Exhausted from having the same conversation with doctors over and over again.
I am NOT GOOD at explaining my symptoms. Doctors -- even good, caring, intelligent, well-intentioned ones -- have about 15 minutes with a patient, and I have a LOT of symptoms and history to get through.
If I had just a few words, which could explain even some part of this -- which would immediately translate to them some of the severity or physiology or life-altering-nature of this, it would be incredibly helpful. We could finally move forward instead of getting lost in the weeds or off on rabbit trails.
I need a better language to communicate with doctors, and a diagnosis would give me that.
I try to give people the benefit of the doubt. Everyone has a bad day. Everyone has a weird encounter every once in awhile. But I am so tired of having this conversation. Of trying to convince medical professionals that it would be worth looking a little bit further. That they haven't put all the pieces together yet. That there are things that seems small on the surface that could be bigger clues if they'd take a closer look.
And on the other side of things, I am so tired of being lectured over and over that patients should put their whole trust in evidence-based, science-based medicine, and stay far away from the internet. That is what I want. I want my western-medicine doctors to tell me the physiological reasons for my symptoms and the research-proven treatment options.
What are you supposed to do, when science-based medicine seems intent on giving up on you?
Patients have to walk a fine line in every conversation with doctors -- if I try to push too hard for a diagnosis, they seem to think I have an unhealthy obsession with needing to know every minutia of what might be going on, and worry that I might not be able to accept the situation I'm in; if I back off and let them lead the way, they think that I'm basically okay, just a little run down, and probably will feel better after a few months of rest.
I am so frustrated with this catch-22. I don't think it's unreasonable to keep asking questions about an illness that has turned my life upside down, and seems to be getting worse.
Saturday, January 21, 2017
Greetings dear choristers!
Welcome to Choir: Spring 2017 edition!
After a first-week (which I missed) and a snow-week, we are officially back!
It was a great night, very full of new and old faces, and a surprise spelunking expedition. Seriously a great and fun night.
I spotted some new faces as I sheepishly snuck into the alto section a tad tardy. Welcome new choristers, and hope to officially meet you soon!
Alas, we also celebrated, with food, drink*, and stories, the news of Gordo's retirement.
Fear not that his talents will be neglected: the inside scoop says that he has already been recruited by the Arbor Acres Sharps and Flats!
Confirmed: we will be kept apprised of any upcoming concerts to ensure that his many fans will be in attendance.
(Though as a former Southern Baptist I always suspect there's a flask hidden somewhere in any Presbyterian choir loft ;)
The Organ Tour:
Whilst the organ is under repair, it is open for super-secret private tours!
If you are able*, I highly recommend journeying to the center of the pipes with Susan.
My only regret is that I didn't take video. The pictures don't do justice to the size and scale, and Susan is a great tour guide, with all sorts of technical and musical and historic information. Very very cool to hear a musician talk about an instrument she loves playing!
*the only catch: it does require some climbing ability. 9 days out of 10 I wouldn't have been able to do it, so I'm so glad I was having one of those 1-in-10 good days this week! For this reason, I don't think I'll be able to go back up, but if someone wants to take pictures/video, let me know and I can post them on a future blog edition.
Christus Paradox. Yes. This week. The 22nd. Confirmed.
Despite the assurances of M. Dodds... "it's an easy piece!" "piece of cake" "we'll be great!" I have the recording on repeat the rest of the afternoon...
Of note: there is a lengthy in-depth commentary attached to the sheet music, from which we learn -
It's an exceedingly thoughtful text, reflecting on some of the many names of Christ.And.... that's as far as I got, while the Tenors were working on their parts.
M. Dodds would like to remind us that the 6:30 rehearsal begins at 6:30. Also, the 8:15 Sunday morning rehearsal begins at 8:15.
Mea culpa. Add "on-time to choir" to my resolutions. And probly to "Lenten goals", as well.....
Seeya Sunday (or soon)!
Monday, January 2, 2017
It's the first week of a new year, and time to take stock of The State Of Things; look forward and back.
The truth is that things are as they always are. Life is good. Full of joys big and small.
At the same time, things are increasingly different. This time last year, we generally thought that while I was a long way from 'well', my health seemed pretty stable. I was using time and energy to lay groundwork to return to work when I got better. This Crazy Illness(tm) seemed a confusing blip in the road, but I felt I had a pretty good handle on it.
But things changed this summer. The reality is that my symptoms have spread, and I'm getting slower, and basic activities are getting harder. Going up and down stairs, keeping the house clean(ish), writing regular blog posts....
So. Where is 2017 headed? What will life look like this year?
I have a long long list of things I'd love to dig into. A couple data science projects, some arts-and-crafty type stuff, the Etsy store, books, parks, family and friends near and far I'd love to see....
But the world inches smaller, and there's just not room for all of it.
My best laid plans keep getting derailed; sometimes by illness, but more often by the bureaucracy of illness. I spent the last two months of 2016 completely overwhelmed by taxes, and health insurance. I have an upcoming blog post on all the reasons I was 'not compliant' with medications during the last year. Hint: none of the reasons were because I was lazy or just didn't want to take them.
So I have no big goals or resolutions for the year. The year is too expansive, and I'm not sure what 'achievable' looks like these days.
But I do have some plans for January.
For a short while, at least, I'm taking a hiatus from the ambitious posting schedule. Even the Music Monday posts can be incredibly time consuming. (One reason: when I say that things are more difficult, that includes writing. Picking words, editing... it takes hours just to write a small, simple, focused post. It seems like it should be easy because I'm sitting. Nope. Thinking is work. Just like everything else. I don't have the energy to cook dinner and also write. It's one or the other. Something's gotta give.)
So for January, I want to write just a few good posts focused on life with this illness -- the challenges with travel, and finding medications, and things like that. Maybe get a little ahead on upcoming posts, and work back up regular posting when I'm able.
At the same time, while there might be less on the blog, I want to share much more on social media.
It is too difficult to share all of what's been happening in passing moments I run into people. And there's a big difference between good and bad days (and if I'm out and running into people... it's definitely a good day).
There were a couple times in December when dear friends stopped to ask if I was doing much better... because I seemed bright and cheerful and.. well, I just seemed better.
The truth was that those days were, ironically, the days that I'd had exactly zero hours of sleep the night before. I'd been up literally all night long in pain.
Caffeine and will-power are powerful forces, my friends, and I am proud that my default-setting is 'fun and positivity'! But I need people to know the truth of what's going on. And that includes the in-between, stuck at home, house-is-a-wreck days, too.
So I want to try to share more. Not for sympathy or attention. But just to give light to more of the story.
The number one thing on the agenda for health is to find a local patient advocate. There are many pieces that I keep trying to handle and lately I'm dropping more and more of them. I need help managing appointments, and figuring out the next step, and with even 'small' things like going to pick up medicine.... I need help. Patient Navigators, where are you?
This is a long story, and one I've been hesitant to talk about because it potentially opens everything up to unasked-for opinions and criticism. But for reasons many and varied, I've been unable to work for two years. And thus, have started the never-ending process of applying for disability.
Each time I think I've accomplished a step, they hit me with something new that throws all my other plans out the window. I was supposed to have an appointment with my Neurologist this month, but instead will be meeting with a doctor at the request of DDS. This is my life. Another reason I desperately need a patient advocate.
I was recently reminded of how important the heart-building stuff of life is. On paper I could make a good case for dropping everything except the medical stuff. But it would be a big mistake. One of my favorite verses is "The JOY of the Lord is your strength". The good life-stuff is what gives me the energy and encouragement to keep moving forward through the Terrible Bureaucracy Of Illness (tradmark pending).
The big event this month is a father-daughter roadtrip to Kentucky for a basketball game at Rupp! I'm so excited I honestly don't know what to do with myself. Other things like choir and bells and Bible study will happen when I'm able to, but #WildcatWeekend is going to be the awesomest.
I spent New Year's eve in PJ's, with Netflix. But I spent the first day of 2017 at church.
First Pres was packed to the rafters on New Year's morning, celebrating Epiphany with stories of Light. And Lord of the Rings references, and handing out flashlights for kids-participation, and totally cracking up (seriously - the whole congregation totally cracking up mid-song) at the powerpoint typo that included 'golf' as one of the three great gifts brought by the magi.
I laughed, and prayed, and worshiped with my community of faith. A beautiful way to start the new year.
It's a New Year, and a New Day.
Go out in JOY and be led forth in peace.
Let's go exploring.