Saturday, March 2, 2019

The Great Mast Cell Activation Controversy: Finding a middle ground.

When is a diagnosis not a diagnosis…

Welcome to the weird and mixed up world of Allergy/Immunology Mast Cell debates.

A few folks have been asking lately --- "I thought you finally got a diagnosis - it seems like you're still searching for answers?", so I thought it might be time for an update.

Here is the deal with Mast Cell Activation Syndrome:

  1. There are A LOT of people out there, who are very ill, and no-one is able to explain exactly why. Some of these patients are truly "undiagnosed" - some are misdiagnosed or are living with a diagnosis that we don't really understand (ie: CFS, Fibromyalgia, "psychosomatic" disorders).
  2.  A few years ago, an oncologist who had been treating Mastocytosis (the cancerous version of MCAS), started seeing a number of patients who had all the hallmark signs of Mastocytosis, but were failing the standard tests to check for it.
  3. These patients, it turned out, DID meet an obscure set of diagnostic criteria set by the World Health Organization for "Mast Cell Activation Syndrome".
  4. Also, these patients, incredibly, Responded To Treatment, as if they did have MCAS or Mastocytosis.
  5. Note: basically the difference is that in Mastocytosis, your body makes too many Mast Cells, and in MCAS, you have an appropriate number of Mast Cells, but they are over-reacting and releasing a ton of biochemicals that cause all sorts of problems. Mast Cells are responsible for allergies -- they are the cells that release Histamine. But they can also release a bunch of other biochemicals. Unfortunately, we can only test for a handful of these, so it's hard to prove exactly what is going on, unless you have elevated levels of Tryptase.
  6. MCAS was quickly picked up by a number of doctors and patients looking for answers, and many of these patients saw relief from all sorts of symptoms
  7. As it gained traction, however, more and more undiagnosed patients who have been incredibly sick and living without any answers, started showing up at random Allergy offices, requesting to be evaluated for MCAS.
  8. These allergy doctors quickly became overwhelmed with complex patients who did not meet the 'traditional' criteria for MCAS OR the traditional criteria for allergies in general. (ie: these patients had a normal Tryptase test, and often even failed skin-prick tests).
  9. This has led to a tremendous push-back from the Allergist/Immunologist community. Doctors are working to change the guidelines for diagnosing Mast Cell Disease, and are actively pushing back against the patients who are flooding their offices looking for answers.

Here's the thing -- there are a lot of moving pieces going on and I can see several sides of this.

My take:

  1. Dr Afrin's book probably pushes things a bit too far.. I look at it as a compelling hypothesis, but one that still needs rigorous testing. (Once you have a shiny new Diagnosis hammer, everything looks like a nail....)
  2. However: there IS a good deal of evidence that this could be a big clue to the crazy symptoms experienced by patients with a wide range of Autoimmune diseases, as well as a clue to what is going on with some undiagnosed patients
  3. Trying to navigate the medical system as an undiagnosed patient is one of Dante's circles of Hell. I continue to be astonished by the arrogance and carelessness of doctors when faced with a patient they don't know how to help.
  4. At the same time, I sympathize with doctors who are being overwhelmed with patients who are not in their normal wheelhouse. 
  5. However -- I would expect a doctor who disagrees with this diagnosis to say: "huh, that's not how I understand that disease and I don't feel comfortable commenting on it or treating it." Instead, I have personally experienced appointments where the doctor responded with a condescending, insulting lecture that would drive many other patients from the traditional, science-based medical community entirely.

Somewhere in this, we have lost sight of the fact that:

  • patients are suffering, 
  • it is a Good Thing when they seek out traditional medicine for answers, 
  • and that this seems to be a reasonable, intriguing hypothesis that needs to be thoroughly tested.

For solid, science-based information about what we know and don't know about Mast Cell Disease:

The one thing that gets me about all of this, is the giant elephant in the great Food Intolerance and Allergy Controversy is this:  Migraines.

Migraines are widely accepted to have crazy, weird food triggers, and importantly: we don't really understand why. There is a TON we don't understand about what happens in migraines.

Also: a large majority of my symptoms would, under slightly different circumstances, fall easily under "complex hemiplegic migraine". And in fact, a couple doctors (including at least one neurologist) have suggested I am stuck in some sort of weird, semi-permanent state of this.

But because it never completely goes away and doesn't follow exactly what doctors expect for that to look like… well, it's just like every other theory out there. This is either something new that we don't understand, or it's a very weird version of something we sort-of know about but don't really understand.

I will just end with this:

  1. This month with mark 5 years with this crazy illness.
  2. It has been almost that long since I have had a piece of pizza.
  3. It is Not In My Interest to limit my diet so strictly. It is hard. And isolating. And a huge pain in the neck.
  4. If you can tell me how I can go eat a piece of cheese and a piece of bread and NOT have blinding nerve pain, I will kiss the ground you walk on and phone in my order to Mellow Mushroom right now.
  5. There is no traditional neurological medicine (ie: Gabapentin, Topomax, etc), which has helped the nerve pain in any appreciable way. While, inexplicably, but miraculously, KETOTIFEN* (a Mast Cell Stabilizer), has made a huge difference in all of my symptoms.
  6. Moreover, while the Gabapentin may have had a tiny effect on the pain, it definitely wasn't stopping the process -- after the pain recedes, the area that it was hitting is then numb, losing the feeling of 'sharpness' and hot and cold, and if it's in a place like my hand, or arm, or foot, the area is then weaker and I have motor control issues. It's subtle, but I am right-hand dominate and my left side is definitely the stronger one now. On the other hand, Ketotifen seems to reduce the entire reaction-process, meaning that I have not lost as much motor function with each attack as I previously was losing.
  7. I get that it doesn't make sense and there isn't an easy explanation for it, but before jumping on the "this is the next crazy thing that weird patients will latch on to" bandwagon, I would just ask -- what would you do if you were faced with crazy, life-altering pain, doctors had no answers, and you found something that actually helped? What if it was someone you cared about and respected in this situation?

Finally, as a patient, it sucks to hear "I don't know, and I don't think I can help you", but that's a message I am prepared to hear.

But MCAS is NOT the next anti-vaccine campaign or Opioid crisis.

There IS some science behind this, and it is time to find a middle ground.

This is probably not the answer to life, the universe, and everything.

But it does seem to explain a few things that we haven't understood before, and absolutely warrants more research.

At this point, I am just advocating for patience and respect -- for those living with illness and needing answers, and for the doctors that these patients are seeking out.


*Part of the pushback for  ketotifen is that it has to be ordered through a compounding pharmacy.

Here's the deal:

  1. It IS FDA approved in the US in the form of eyedrops and asthma inhalers.
  2. In other countries (Ie: Canada, Europe), it's approved in pill form.
  3. It isn't that it's some wackadoodle drug or questionable supplement -- the drug companies in the US decided it wasn't cost-effective to jump through the FDA hoops to get it approved.
  4. See also: the very long list of old-school meds which are now impossible to find, aka: "Orphan Drugs".

Thursday, November 8, 2018

Old Music, New Playlist

Sometimes a girl gets a hankering for old surf rock.

Unconfirmed: this was exactly why Youtube was invented.

Playlist: Surf Jams and Some Other Stuff

Monday, November 13, 2017

Misadventures in Medicine: What I Learned About SSDI and ACA Health Insurance

Disclaimer: I am not an accountant. Nor a tax lawyer. Nor a disability lawyer. 

There probably exist solutions that better suit what you, as an individual, are trying to accomplish. 

My best advice is to contact an accountant or a lawyer to figure this out. I am mostly writing this to illustrate how crazy a situation it is. But also because it is a trickier situation than it seems and I hope that in writing this, I can encourage others to make careful and well-informed choices!

Second disclaimer: this is NOT a political post, and I do not want my story to become a political football. I will turn off the comments if they veer into politics. 

Also, I am NOT writing this to complain or to imply that I should deserve more - or different- assistance than I am receiving. My biggest frustration is not that there is not more help available, but that it is such a difficult situation to try to navigate, and I can be severely penalized for making a mistake.

Third disclaimer: this was written in the Fall of 2017. No idea what might change next year.

This Crazy Illness has taken me on a strange journey through the medical world, but nothing has been stranger than what I've encountered in Social Security Disability and navigating the ACA Health Insurance market.

The bottom line:

There's a lot of crazy stuff at the intersection of 'filing for disability' and 'qualifying for ACA tax credits', and making even a small mistake can cost literally thousands of dollars. 

The thing that is most frustrating to me is that this seems like a pretty obvious situation for lawmakers and government agencies to have planned for, but it is very difficult to find good answers.

The specific situation I am in is basically this: 
1. I became ill in my mid-thirties. (Which is old enough to have started saving for retirement, but a long way from being able to retire.) 
2. I am single. (If I was married there would be different options available, like spouse's health insurance) 
3. I don't have kids. (I don't qualify for Medicaid, SSI assistance, etc) 
4. I have a mortgage on a house. (Which means I itemize tax deductions)

Very Simplified Background on The Deal With Disability 

The thing about filing for disability is that it takes a very long time to get approved. The story of how I applied is complicated but the gist is this: It took around 12 months to receive an approval, and I was lucky. If it had been denied, there is at least a 12 month wait to get a hearing.

During this wait, patients are (obviously) not earning any income, and there really aren't a lot of options -- blow through savings (if you have any), and borrow from personal connections, or run up credit card debt.

When you are finally approved, you then receive a large, lump sum, covering the amount of time that you've officially been disabled (minus a 6 month waiting period). 

In other words, this lump sum amount suddenly appears in your bank account, but keep in mind that most of that money is probably going to be spent paying off bills, credit cards, and personal debts that patients have accumulated while waiting for it to arrive.

The way that traditional taxes work, there are ways to make sure that it doesn't really cause a huge problem, because you can apply it to previous years. From my point of view, it's a headache, but something the average accountant probably has dealt with before.

But here is the thing: It doesn't just affect traditional taxes, it also affects whether you qualify for tax credits to pay for ACA health insurance.

Enter: ACA Health Insurance And Tax Credits

There are really two crazy situations people find themselves in when filing for disability: before it is approved, and after. Eventually, patients become eligible for Medicare but it's a 2 year qualifying period.
ACA Tax Credit Brackets (for North Carolina): 
Below $12,060
Since your state hasn't expanded Medicaid, you won't qualify based purely on income. You also won't qualify for financial assistance on a health insurance plan. 
$12,060 - $30,150
A health plan with lower monthly premiums PLUS extra savings. 
$30,151 - $48,240
A health plan with lower monthly premiums. 
Above $48,240
You won't qualify to save on a health insurance plan.

Before approval:

A patient is no longer able to work, and earning no income.

In my state, this person does not qualify for any tax credit assistance because income is less than $12,000.

In other words, it's a catch-22: if you were working, you wouldn't be disabled, and you would qualify for some sort of assistance. But because you're disabled, you aren't earning any income, so you don't qualify for any assistance.

This seems like such a ridiculous situation for people to be placed in, and at least three very easy options to let them fall into: Medicaid, ACA Tax Credit, or Medicare. I'm sure there are a lot of very good policy arguments for all three, or something else entirely. My biggest frustration is that people in this situation are falling through the cracks completely.

After approval:

The lump sum counts as income when determining whether the patient qualifies for any tax credits or extra savings.

But, in theory, (I believe -- I've seen conflicting information) you can choose whether to apply it to prior years, or keep it all in the current year.


Before approval, there is only one solution I found: I was able to pull money out of a 401k/retirement account and count it as income to qualify for tax credit.

This has to be done very carefully. It needed to be a specific amount. In my case, I wound up needing to switch from a 401k to an IRA (which took time, so this should definitely not be tried at the last minute!), and because I had not been approved for disability yet, I was risking a large penalty for taking it out early.

This year I find myself in the After Approval situation. I have a couple theories, but still have not come up with a great solution. 

Spreading the lump sum over the year previous will cause one set of problems, while keeping it all in this year causes another set.

Largely this is a catch-22 because of the 'solution' for last year's taxes to establish income. It underscores how badly a disabled person could be penalized for taking 'too much' money out of retirement savings.

Ie: if you are disabled, and need to withdraw a large amount from a 401k/IRA, then it might help you qualify for tax credits that year, but could wind up causing you to lose those tax credits if the lump sum is then added to it.

Luckily I am not in such a sticky situation, but I am incredibly frustrated with how complicated this is. This is literally the energy I should be using for doctors appointments and dealing with medications. Last year, there were several months of appointments I had to postpone so that I would deal with this instead.

Additional Notes/Common Questions I Get:

SSI and SSDI are two different things. SSI does not count as income (for ACA tax credits), while SSDI does.

SSI is based on income, and if I have more than $2,000 saved, I don't qualify

Even if I go through all my savings, I won't qualify for SSI because I will receive more than $2000 a month from Disability.

Disability basically (I'm simplifying this considerably) considers you 'no longer disabled' if you are able to earn enough money to reach the poverty line (which means that you would earn a little over $1000 a month).

Disabled persons become eligible for Medicaid Medicare* after a 2 year qualifying period (this is actually 2 years, plus 6 months from the date that you officially become disabled).

I don't know if this is common but I will be paying more on Medicaid Medicare* than I was for my silver ACA plan with tax credits

Over three years, my ACA plan deductible has gone from about $800 to $3600. Out of pocket max has gone from about $1500 to $5800.

The most astonishing thing I have learned through this, and the one thing that I will jump on a political soapbox about is this:

Money saved in a Health Care Savings Account (ie: you have a HCSA from work where you've been saving money through healthy years) will count against you when applying for SSI or additional assistance. Given that disabled persons are likely to need expensive procedures and equipment, wouldn't it be in our best interest to allow them to protect that money and keep it in savings for their medical needs, instead of requiring that they withdraw it, blow through it all, and only then allow them to apply for more assistance?

In any event, it doesn't apply to me, as HCSA's were fairly new to my company when I stopped working, and I wouldn't qualify for SSI regardless. I'm just saying, that this seems like an obvious thing to want to encourage people to be able to save as much as possible for future medical needs. Also crazy is the fact that the government employees I asked about this had no idea what the answer was. Again, I shouldn't have to hire an accountant and a lawyer to make a good decision about health insurance.

But that's the end of the soapbox.

I would love to post links to good resources, but unfortunately, most of this information has been difficult to find, and has mostly come through direct conversations with professionals. 

If you know of any good online links, please feel free to post them in the comments!

*I knew I would write those backwards at least once.

Thursday, May 4, 2017

Misadventures In Medicine: Mast Cell Activation Syndrome

Just a couple months ago, I passed the 3-year mark of This Crazy Illness, the anniversary of the first trip to the hospital, the first time I knew for sure that something was wrong.

But looking back, things had been off track for quite awhile. In fact, there is a litany of random symptoms that have been lurking for decades; things I was either willfully ignoring, because my dad raised a tough daughter #justsayin , or things I honestly didn't realize were all that weird.

Ummm... most people's shoulders don't pop halfway out of joint when they pick up something heavier than a book? Who knew?

And most beachcombers don't break out with weird skin reactions from dipping their toes in the ocean? Well, yeah, growing up in Florida, I did actually know that, but it didn't seem like something to worry about... just another thing on a long list of things to either endure or avoid.

Working with a fantastic Patient Advocacy group (which deserves its own blog post), we've come up with a really good theory about all of this. A Grand Unifying Theory that explains almost everything about This Crazy Illness, along with a ton of stuff going all the way back to childhood.

This Amazing Theory is... (drum roll...) Mast Cell Activation Syndrome. (Or, sometimes Mast Cell Activation Disorder.)

MCAS/MCAD is basically a really crazy type of allergy. Mast Cells are involved in fighting off foreign invaders, and perhaps their greatest claim to fame is that they release Histamine (yick), which of course is the bane of allergy sufferers everywhere.

But the thing is, they can actually release a ton of other biochemicals. Like up to 200 different ones that we know of. And these biochemicals can trigger all sorts of responses in all sorts of organ systems.

We've sort-of known about this for awhile because of a type of cancer called Mastocytosis, where your body is creating too many Mast Cells. But in just the past 10 years we've started to find that even if you can have the appropriate number of Mast Cells, they can become super over-reactive; responding to things they should just ignore, and releasing all sorts of chemical "mediators" that they shouldn't be releasing.

No Bueno.

I want to stress that this is not something I've been diagnosed with yet. But I have already been tested for it, and I have a big trip on the horizon to a specialist in Atlanta to discuss test results and diagnosis/treatment options.

It's the best lead we've had in a long time, and it's hard not to get too excited about a potential answer for what's been going on.

But whether or not this turns out to be the culprit, I wanted to put together some resources that might be able to help others in finding a diagnosis, or in learning more about what a friend or family member might be going through.

A couple caveats: 

It's new enough that finding easy-to-read sources that are also easily vetted for accuracy is sort-of tough. Many of the healthcare mainstays just have a paragraph or two under the Mastocytosis heading.

Also, it doesn't really have a good niche it lives in, in the medical world. Doctors who specialize in MCAS tend to be Hematologists or Allergists, but your average allergist probably won't have seen it before.

One last note: things to watch as the research progresses -- there seems to be some sort of link between MCAS and Hypermobility issues (specifically a certain type of Ehlers-Danlos Syndrome) and also MCAS and Autism. 

It's too early to say for sure, but doctors and patient-communities have both noticed what seem to be weirdly coincidentally high correlations. And there's also a working theory that a subset of Chronic Fatigue Syndrome patients might actually be MCAS patients 'in hiding'.

MCAS Resources:

Never Bet Against Occam by Dr Afrin - A book written by one of the leading experts, detailing how he came to recognize the underlying physiology that was happening in his patients, and filled with case studies and examples of the many ways MCAS can 'present' and can impact patients' lives.

Mast Cell Research - Companion website for 'Never Bet Against Occam'

Me And My Mast Cells - "A compendium of information about Mastocytosis' -- extensive resources collected by a Mast Cell patient-advocate.

Mast Cell Aware - Patient advocacy organization, raising awareness.

Mast Cell Activation Syndrome: Proposed Diagnostic Criteria - article published 2013 in the Journal of Allergy and Clinical Immunology

Mast Cell Activation Syndrome: A Review - (behind a paywall... and I'm showing great restraint by declining to get up on my 'patient access and inclusion' soapbox...) published 2013 in Current Allergy And Asthma Reports

Characterization of Mast Cell Activation Syndrome - (again, behind a paywall.... ahem.) Dr Afrin is one of the authors, and it was published very recently (March 2017, I think). I was actually able to get my hands on a copy, if any real-life friends would like to borrow it.

Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases (again... paywall) Dr Afrin is a co-author, and I happen to have a copy of it, as well. This one was probably the most interesting to me besides the book, because my first and most severe symptoms were neurological, including burning nerve pain, problems with vision and balance, numbness and loss of motor control after a symptom flare, and migraines.

Mast Cell Activation Syndrome: When Histamine Goes Haywire - okay, here's the thing. I have absolutely not vetted any part of this website except for the page on MCAS. No idea the agenda/accuracy of anything else, but the page on MCAS is a good, quick, easy, accurate read.

There are some great resources out there, but most seem to live on patient blogs (never underestimate the power of an intelligent, engaged, intrepid patient!), or in research articles....

If you know of any good resources for patients and caregivers or their doctors, please share in the comments, or shoot me an email!

Nota Bene: due to my fear and loathing of all things Life Sciences (pro-tip: fourth grade science labs where the nine-year-olds dissect bunny rabbits might, ya know.. sometimes backfire on your valiant efforts to get kids interested in biology. I'm just saying.)  please take my summaries with a grain of salt. Refer to the experts in all things bio-chemical!

Tuesday, February 21, 2017

A Gluten Free Dairy Free Road Trip to Lexington and Asheville

If you follow me on instagram (@abridgedtheblog), you may have seen some of the awesome father-daughter roadtrip that dad and I took to Lexington, KY. We drove from NC to Lex through West Virginia, without really stopping. Then came back through TN, stopping in Gatlinburg for an afternoon and Asheville overnight.

There were a number of challenges to travelling with This Crazy Illness, but the big one was where on earth we would be able to eat. My food allergies are probably the biggest challenge to roaming too far from home, but with a little planning it all worked out really well.

Here are the highlights!


- Research

A lot of background research went into this trip, and thank goodness for the internet. I started out at Find Me Gluten Free, then went to each restaurant's website to check the menu. If they can handle gluten free, they are usually able to accommodate other allergies as well, but it helps to know ahead of time what my options might be.

And while many places have GF menus now, most of the options still involve cheese and I've actually had a really hard time finding any appetizers at all. So checking out menus was a big help to narrow down options.

- Ask Around

I wound up with great suggestions from A Southern Celiac, who recommended Tupelo, and a Lexington local who suggested a couple places to try and more importantly, a couple places to avoid!

- Keep It Simple

People often wonder why I don't eat out more often in Winston -- the answer is that ordering is a painful exercise in 'how to be high maintenance' and as a reward I usually don't get to order anything very interesting. The best way I've found to make sure something will be safe to eat is to make sure it's simple to fix, so nobody has to go searching for sauce ingredients or double checking anything.

For breakfast I usually get eggs, bacon, and tomatoes slices; any other time I usually order a garden salad with grilled chicken and oil and vinegar dressing. Not very interesting, but there's usually a sigh of relief from the server!

The Places:

1. First Watch

First Watch is a small but growing chain that I'm pretty familiar with because there are a few of them in Orlando. It's a casual sit-down restaurant that's probably in the 'diner' category, but with really good-for-you food.

My 'usual' is a variation on the 'Traditional Breakfast': three eggs, bacon, potatoes, and instead of toast - sliced tomatoes. Yum!


They are awesome with allergies, and train their staff well. I've only had one bad experience at one in Orlando. (Server was having an off-day. Should have been a sign when she kept forgetting other parts of the order...)

2. Chatham's

Oh Chatham's. What an adventure we had trying to get there! There was construction going on right outside and I swear it took half an hour to get around it and steal a parking spot.

Chatham's gets a ton of points for having a GF menu and more importantly -- a GF dedicated fryer! Which means I was able to order sweet potato fries! They also get a ton of points for suggesting a lettuce wrap for the burger I ordered, which made it feel much more like a burger, even if I ate most of it with a knife and fork.


They were really thrown when I asked them about my dairy allergy, which was surprising because of how well they were prepared to deal with gluten. If you have any other food allergies, make sure to call ahead and preview the menu ahead of time so you know what your options are.

3. Tupelo Honey

Tupelo's was a fantastic suggestion from Southern Celiac, who mentioned the one in Knoxville, and when we wound up looking for breakfast in Asheville (who quits breakfast at 11am?? Looking at you, Corner Kitchen. Kidding. Still love you.) we were so glad to find it there! Delicious breakfast plus high-octane coffee. Win-Win.

They also offered up some absolutely delicious GF-DF toast!


The menu is mostly well-crafted meals. If I was going to stick to specific menu offerings it would have been a pretty good set of hurdles to figure out which sauce contained which ingredients, etc. But they were totally open to my off-menu ordering of eggs, bacon, and tomatoes, which made it (hopefully) easier for all of us.

4. Edison

Edison is probably the biggest standout of the bunch. Okay, maybe a tie with First Watch. Maybe.

Edison is the casual restaurant inside the wonderful, amazing Grove Park Inn. They are incredibly allergy aware, and quick to ask the chef about any suspect ingredients. And! And! They have The Most Amazing GFDF bread. In. Cred. I. Ble.

This was the first time in a very long time that I was able to branch out and get something other than my usual salad-with-chicken or lettuce-wrapped-burger, and ordered an amazing pork BBQ sandwich, with a bbq sauce that involved apples, and I'm wishing now that I'd taken a picture of the menu. It was so so so good, and so good to have something new and different!

Someone seriously needs to start running a train from Winston to Asheville so I can have regular dinners at Grove Park!


The only hiccup was a snafu when we were seated -- I think they forgot to let our server know, and we had to track someone down. But they more than made up for the long wait by offering us an appetizer! There weren't many GFDF options for appetizers and I wasn't that hungry thanks to road-trip snacks, so I deferred to dad, who wound up picking a cheese plate that he says was absolutely terrific.

Also: they don't have a separate GF fryer, so french fries are off the table.

The Snacks:

My road trip snacks are basically the same as what I eat at home.

- Apples, Bananas, Potato Chips, Raisins, and Enjoy Life Chocolate Bars.

 (Who eats three bananas, an apple, and at least entire bag of potato chips a day in between meals? This girl.)

The Big Rice Elephant In The Room:

This is the deal: I should not have eaten the bread. While gluten and dairy are the worst kind of kryptonite for me, other grains like rice can pack a pretty big punch as well. And the usual go-to ingredient for 'gluten free' foods is -- you guessed it -- rice.

The delicious toast and bread from Tupelo and Edison's, and the snack bars from the road trip snack-bag? Should not have had. And I am paying for it now.

The plus side is that when I eat something like that I get a short-term burst of energy (like drinking a ton of coffee), which makes me seem "better" to the outside world. The payoff, though, is painful. Burning nerve pain is not a fair price to pay for energy. Ouch!

But other than my weakness for pretend bread, the food on the trip worked out really well!

How do you travel with food allergies? Do you have go-to roadtrip snacks?

Tuesday, January 24, 2017

A More Meaningful Diagnoses

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 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

From the Choir Loft: Hails and Farewells and Private Tours

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.

This Week:

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.

Some Housekeeping:

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)!