Feeling like Ross Geller Again

Remember when I said my 2017 New Year’s Resolution was “No surgeries in 2017” – and then I had to have surgery?

Well, I was wiser this year.  I did *not* make a resolution of no surgeries in 2018, which is good, ’cause here I go again.

I met with my orthopedic surgeon yesterday and told him that my wrist is hurting again.  He took x-rays and informed me that the stainless steel screw in my wrist appears to have shifted a little bit, and also appears to be loose and moving around a little bit.

You can imagine the fun Spousal Unit is having with my diagnosis of a “loose screw.”

The surgeon wants to go back in and remove the screw, now that the wrist is stable and the tendons have had time to repair.  He wanted to do the surgery a few weeks from now, but I negotiated for a couple additional weeks – not because I like the discomfort, but because I’m still trying to finish grad school.  And also because I will need time for the authorization from Tricare to come through, which is apparently a hassle right now due to the contract changeover to a new contractor.

So why did I say I feel like Ross Geller?  Well, that’s Spousal Unit’s fault.  When I made the resolution to have no surgeries in 2017, and then needed surgery, Spousal Unit reminded me of the Friends episode in which Ross resolves “No divorces in ’99!” (See below):

So here I am.  Headed for surgery again.  Wondering if I should tempt fate by saying “Just the one surgery in 2018.”

Shoulder Surgery: The Good, The Bad, and The Ugly

To repair some of the damage done when I wiped out on that wet tile floor, I’ve had two shoulder surgeries – performed by two different surgeons.

The first surgery was to repair my severed labrum.  This injury is more commonly known as a SLAP tear.  SLAP is an acronym for Superior Labrum Anterior and Posterior.  The labrum is a ring of cartilage that surrounds the socket of the shoulder joint.  It helps to deepen the shoulder socket and to stabilize the shoulder, and is the attachment point for many of the shoulder’s ligaments and one of the biceps tendons.

Torn labrums are ridiculously painful.  Before I was successful in convincing  my PCM that I needed a shoulder MRI, I was taking strong drugs and begging for a referral to pain management.

My first shoulder surgery was also my first ever surgery – if you don’t count having my wisdom teeth out years ago.  It was pretty straightforward.  My labrum was severed; the surgeon went in and reattached it.  He used a couple of plastic anchor bolts and some sutures to reattach the labrum.  He cut away a little dead tissue, and made sure there was no other damage that had not been detected by the MRI/arthrogram.

Prior to the surgery, I had been in a ridiculous amount of pain.  I was able to sleep in one position on the couch – lying on my non-injured side, with my back against the back of the couch, and surrounded by 5-6 pillows that held my shoulder in the one position in which the pain mostly subsided and I could fall asleep.  Of course, anytime I moved in my sleep and the shoulder shifted, the pain woke me up.

Post-surgery was worse.  I didn’t get the memo that the best way to recover from shoulder surgery is to sleep in a recliner.  We did not *have* a recliner.  Had I known, I would have begged, borrowed, or bought a recliner.

Seriously, if you’re going to have shoulder surgery, make sure you can convalesce in a recliner – or an adjustable bed.

I came home from out-patient shoulder surgery narc’d to the gills (technical term) ;-).  Typically, for shoulder surgeries the anesthesiologist will do a nerve block, which blocks the nerve signals for up to 24 hours.  I was also placed under general anesthesia for the surgery.  And the nurses often will give you a narcotic before you leave post-op, to make sure you “stay ahead” of the pain.

So Spousal Unit got me back into the house and ensconced on the couch.  I got “comfortable” sitting sideways on the couch, with my newly repaired shoulder in a sling that was resting on multiple pillows and leaning against the back of the couch.  I dosed most of the rest of the day, and slept sitting up for the first few nights.  (Not comfortable.  Do not recommend.  You need to be exhausted to do it.]

I had a long and painful recovery.  My labrum hurt significantly LESS after surgery, but it still hurt like hell.  You have to keep your shoulder immobile for a long time to allow the labrum to heal, and that creates other problems, as your shoulder and elbow can get painfully stiff.

Flash forward two years, to shoulder surgery #2:

The shoulder felt “good as new” for about a year and a half.  And then it didn’t.  First the motion felt “off.”  The shoulder started to catch and clunk.  Then the pain started to return.

By this time, we had moved to another state, and I had a different orthopedic surgeon, who had already operated on my wrist and elbow.  After the manual examination and the MRI/arthrogram, he told me he would operate, but he wasn’t going to repair my re-torn labrum.

In fact, he told me that if he had performed my first shoulder surgery, he wouldn’t have repaired my severed labrum.

“Okay, doc, you HAVE my attention.  Please explain to me why you would not have repaired something that was totally severed and causing excruciating pain, because that sounds totally counterintuitive to me.”

We then proceeded to have a long conversation about labral tears.  And age.  In a nutshell, my ortho explained that labral injuries do not heal well in patients over 40.  Based on his experience and knowledge of the literature, he thought it was a waste of time to repair the labrum again.  Instead, he wanted to severe my (perfectly functional and not damaged in any way) biceps tendon from the labrum and reattach it to my humerus in a procedure called a “biceps tenodesis.”

The reason for this is that the biceps tendon is connected to the labrum, and the tension it exerts on the labrum can prevent the tear from healing and can actually make the tear worse.  By removing this tension, you create the possibility that the labrum might heal itself.  But even if it doesn’t heal, because you removed the stress on the labrum, hopefully the tear won’t continue to get larger.

My surgeon recommended I read a couple medical journal articles on the subject (because he knows I always thoroughly research my medical issues and the procedures doctors recommend to treat them), and then we would meet again to discuss the surgical options.

Here are some of the articles I read to inform my decision about revision [repeat] shoulder surgery:

Controversy persists about whether to repair SLAP tears in patients over 40 years with associated rotator cuff tears (RTC).”

Torn rotator cuff with SLAP tear

The efficacy of biceps tenodesis in the treatment of failed superior labral anterior posterior repairs

“The cumulative evidence supports labral debridement or biceps tenotomy over labral repair when an associated rotator cuff injury is present.”

Subpectoral biceps tenodesis for the treatment of type II and IV superior labral anterior and posterior lesions.

Glenohumeral ligaments

Superior labrum anterior posterior (SLAP) tears

Rotator cuff injury

There’s a good quick-and-dirty summary of the research here, which answers the question: “Why would you fix my biceps if my labrum is torn?” It also provides a good explanation of the procedure and has an illustration.

The research supported what my ortho had said.  In fact, in recent studies labral tears were shown not to heal well in patients older than 26.  26!  In addition to the SLAP tear, the arthrogram had shown a small rotator cuff injury, and the research on that injury recommended repairing the rotator cuff, doing a biceps tenodesis, and leaving the torn labrum alone.

Had this been my first experience with this surgeon, my decision might have been more difficult.  But, based on the research, and based on my previous (all excellent) experiences with this surgeon , I decided to trust him to fix my SLAP tear by ignoring the labrum and jiggering with my biceps tendon.

I felt really uncomfortable letting him cut something that wasn’t broken to begin with.  In the end, you do your research, make the best decision you can, and trust your surgeon (whom you have carefully researched and selected) to do a good job.

Fortunately, when he got inside my shoulder, he found no evidence of rotator cuff damage, so he inspected it thoroughly and left it alone.  Had I needed rotator cuff repair, my recovery would have been much longer.

I was a lot smarter the second time around.  I had a recliner AND an adjustable bed.  Never even needed the recliner – the adjustable bed worked just great!  I was able to raise the head to get enough support for the shoulder, but still be able to sleep.  I still propped up the arm on several pillows, but got much better quality of sleep than the first time around.

But here was the absolute game-changer: a chiller (aka cold therapy).  Now, faithful readers of this blog will know that I seldom endorse any product.  But a post-surgery chiller is something I HIGHLY recommend.

I don’t know how I didn’t know about them before, but these devices circulate ice water over the site of your injury/surgery.  This helps prevent inflammation, and also brings pain relief.  Chillers are particularly useful for joint surgeries (shoulders, knees, ankles, etc.)

I was offered the use of a chiller by some folks at church, because Tricare would not provide one.  [Possibly because my surgery was through a civilian provider.  I have recently seen military facilities loan them to patients post-surgery.]  They come in various sizes.  I was loaned a pretty basic one (see image), but it worked just great.

I understand that the folks I borrowed it from keep an eye open at thrift stores, yard sales, etc., and pick them up pretty cheaply.  Then they have one when they need it, and one or two to loan out.  It certainly made my recovery quicker and much less painful, and I am grateful.

[For the curious: Yes, it’s basically a small ice chest, but it has a pump and hoses that circulate ice water around the injury.  At the end of the hose is a plastic pad (see image) that you wrap around the injured site.  You can secure it with an included velcro flex strap (like an ace bandage).  All you have to do is add ice and water and plug it in.  BE CAREFUL TO AVOID COLD INJURIES.  Don’t ice for more than 20 minutes at a time, remove if it’s uncomfortable, and always place something between the pad and your skin (a hand towel, washcloth, pillow case, etc.).  ]

Why I am in love with cold therapy: After my first shoulder surgery, I was prescribed narcotics – “Take 1-2 pills every 4-6 hours, as needed.”  They wore off after TWO hours, and the pain was overwhelming.  I was living from dose to dose, just trying to hang on.  After my *second* shoulder surgery, I was given the same prescription, but I also used cold therapy.  I took 3 pills TOTAL.  And the second and third were only because the staff had given me multiple warnings about staying ahead of the pain, and I knew from previous experience that I did NOT want the pain to get ahead of ME.  I didn’t think I needed the narcotics, but was afraid to rely on the machine for pain control.  But as I increased the interval between pills, taking them only one at a time, and found that I was able to control the pain with cold therapy, I stopped taking them.  (The other great thing about that is, if you’re not taking narcotics, you don’t get opioid-induced constipation.)

Was the first surgeon wrong?  He repaired the damage, did a pretty good job, and it worked great for about 18 months.  He did no further damage, scarring was almost non-existent, there were no complications, and he didn’t overlook or fail to repair anything else.  My biggest complaints would be that 1) he did a repair that the research clearly shows to have a high failure rate in patients my age.  So I question how current he is in his knowledge of the literature in his field.  And 2) I did not have to suffer as much as I did post-surgery.  I really wish he’d told me about the chiller and the benefits of recovering in a recliner.

Had I seen my second orthopedic surgeon first, I probably would not have needed the second shoulder surgery.

Bottom line: The first orthopedic surgeon was adequate, but probably not as knowledgeable as he should have been.  There is a world of difference between surgeons, even between an *average* surgeon and an *excellent* one.

The Good: Cold Therapy/Chiller.  Adjustable bed/recliner.  An expert surgeon.

The Bad:  Needing revision (repeat) surgery.

The Ugly: The excruciating pain after my first shoulder surgery.  Sleeping sitting up on the couch.  Trying to take a shower after surgery (once cleared by the surgeon).

I did a lot of research before my first shoulder surgery.  I avoided a truly horrible surgeon, and selected one based on research and recommendations.  There was still a lot I didn’t know I didn’t know.  

Stay tuned for blog posts on how to select a specialist, such as a surgeon.  Knowledge is power.


Breaking My New Year’s Resolution: There WILL be surgery in 2017

The plane in this photo is ground looping.  A ground loop can happen when a plane rotates horizontally (slides) while on the ground.  Ground loops can damage the landing gear, underside, and wings of an aircraft.  If a wingtip digs into the ground, the plane can even cartwheel.

Having ground looped my body three years ago by slipping on a wet tile floor and catching a wing (left arm) violently, I find that I am still not fully repaired.

I had hoped that the elbow surgery would be the last required repair.  However, we did not see the results we had hoped for.  The elbow surgery was a success, but I still had symptoms.  Distressingly, the shoulder (which was the first item repaired) was clunking again, and beginning to hurt.  It no longer functioned normally.

After failing physical therapy again, and undergoing an arthroscopy and MRI for said shoulder again, I learned that the first surgery (in the words of my current orthopedic surgeon) had “failed.”  The labrum showed a recurrent tear.

My surgeon informed me that he would not have performed the first repair in the manner in which my previous surgeon did, because I was “too old” for the surgery to be successful.  I might have thought about being offended at the age remark, but my surgeon is just a year or two younger than I am.  However, I was a bit irked that my first surgeon apparently wasn’t as current in the research as my second surgeon.

I was informed that labral repairs were previously thought to heal successfully in patients in their forties, but that more recent research shows the labrum doesn’t heal very well in patients much above 30.  For example, “A systematic review of surgery for SLAP tears included several studies that reported higher failure and complication rates in patients over age 40.”]

Because, of course, that couldn’t be enough, the MRI also showed that one of the tendons that comprise my rotator cuff is now torn also, as is one of my glenohumeral ligaments.

“See Doc, I told you it was broke!”

So now I’m headed for my fourth surgery to repair the damage done when I slipped and fell on that blasted wet floor.  Shoulder, wrist, elbow, and now, shoulder again.

It remains to be seen whether the rotator cuff tendon is torn enough to warrant repair, or whether it can be left alone to heal by itself.  If the surgeon needs to repair the rotator cuff while he’s in there, the recovery will be much longer and more painful.  [If the rotator cuff needs surgical repair, my projected recovery time doubles.]  So I’m hoping the rotator cuff damage isn’t too bad, and he can leave it alone.  The surgeon will probably leave the glenohumeral damage alone too.

It’s disillusioning when you discover that some damage just isn’t worth repairing – you’ll either heal or you won’t.

I know this sounds like maybe my current surgeon just doesn’t want to exert himself, and maybe I should be concerned for my welfare.  But I can reassure you (and myself) that this surgeon is one of the best.  I heavily vetted him before I let him operate on my wrist, and that surgery was phenomenally successful.  He also performed my elbow surgery, which had a successful outcome as well.

*Because* of our previous history, I am willing to trust him with my shoulder, even though what he is recommending sounds a bit counter-intuitive to me.  Even so, I am heavily researching his proposed surgical plan.  He knows that I do extensive research, and has suggested several relevant medical articles for me to review.

I am also aware that many orthopedic surgeons specialize in one area (knee, wrist, hip, shoulder, etc.).  Just because he is one of the best hand surgeons does not necessarily mean that he is a good shoulder surgeon as well.  He and I have discussed this, and I asked him how frequently he does shoulder surgeries, and what his success rate is.  I was satisfied with his answers, and I believe he will do as well with my shoulder as he has with my wrist and elbow.

So, I’m scheduled for shoulder surgery in about two weeks.

I’m really not looking forward to not being able to drive.  Or trying to wash myself with only one hand.  Not being able to open jars (and many other things).  Wearing pull-on pants, because I can’t fasten buttons.  Wearing slip-on shoes, because I can’t tie shoelaces.  Don’t EVEN get me started on how impossible it is to open the safety cap on prescription medicines with only one hand!  (Shouldn’t the pharmacy get notification that the prescription is for a patient who won’t be able to open the medicines if they flip the lid to “Safety”?)

But every time I go through this, it reminds me that my injuries could be worse.  That my disabilities could be worse.  I think a lot about wounded warriors when I am doing my rehabilitation.  My struggles will hopefully only be temporary.  Many wounded warriors live with their disabilities for the rest of their lives.

So many of the things we take for granted are a struggle for those who are incapacitated.  Health and able-bodiedness are the ultimate privilege.

Bottom Line:  I am scheduled for another surgery to repair my damaged arm.  My New Year’s Resolution of “No Surgeries in 2017” will be broken.  This will be my fourth surgery on this arm, and my second surgery on this shoulder.  I don’t know how many procedures the surgeon will need to perform during the surgery – I’m hoping only one.  I welcome whatever good will you’re inclined to send my way – hopefully the universe is listening.

I’m ready for the repairs to be complete and to be “airworthy” again.  I’m tired of living with the lingering damage from this ground looping incident.


Whether I Live or Die

For a long time, I was so sick that I was unable to advocate for myself. I didn’t have the ability to think coherently, and I didn’t have the energy to fight for care (not “good” healthcare, not “better” healthcare, just healthcare Period).

[Fortunately, I seem to be responding to recent medications, which is giving me more of an ability to advocate for myself.]

When I became absolutely desperate, I scraped myself up and went to my Tricare PCM to fight for care. I didn’t get half of what I needed, but I got a little.  Very little.  (He also tried to kill me by prescribing the wrong meds, against my protests.)

Do you have any idea how dispiriting it is to spend all of your energy on one desperate fight for survival, and fail?

I went back to lying on the couch in front of the television in a dark room.

What really made a life-altering difference was when I finally started receiving care from the VA. (Yes, my experience has been mixed, and yes, many veterans are still receiving inadequate care from the VA.) However, my VA PCM, though horrendously overworked, listened to me, believed me, and started getting me the care I needed.

If not for my VA PCM, I would have lost the use of my left wrist permanently.  I know this to be true because my orthopedic surgeon informed me that this was the case.  After 27 months of neglect by Tricare, my wrist was almost beyond repair by the time I finally saw a surgeon.

In addition to a badly damaged left arm, I also have a chronic, debilitating disorder.  After 15+ years, I still have only a partial diagnosis.  However, I have been unable to get the help I need from Tricare.

I went a little over a week ago to try to see a Tricare Patient Advocate.  I got as far as the receptionist.  He asked me what I wanted.  I told him that I had complex health problems and needed someone to help me manage my case.

I told him I wanted to know that *someone* in Tricare actually cared whether I lived or died.

The receptionist told me that if I filled out a bunch of forms AND WENT AND FOUND MY OWN PROVIDER THAT UNDERSTOOD MY DISORDER AND WAS WILLING TO OVERSEE MY HEALTHCARE, I could apply for a waiver for an off-base provider.

Why this response was completely unhelpful:

  1. There are literally only a handful of doctors in the US who understand the disorder my symptoms seem to suggest.  None of them are in the city where I live.
  2. There are very, very few doctors who are willing to take on a patient with a chronic, complex health condition.  They don’t get paid to deal with complicated patients.  The system is not designed to reward those behaviors.  (In fact, I was told that I would not be accepted as a patient at my nearest MTF because I was too complicated of a patient, and they only take the healthy ones.)
  3. I didn’t come to you to get permission to keep doing all the work of overseeing my healthcare by myself.  I CAME TO YOU FOR HELP WITH MANAGING MY HEALTH.

BOTTOM LINE:  I went to Tricare Patient Advocacy for help, and was told to help myself.  I said, “My case is complicated.  I need help managing it.”  And I was told, “Go find a civilian to help you manage it.”  I asked Tricare for help when I was at the end of my rope, and their representative sent me away to fill out a bunch of forms that would only be useful once I had found my own provider.

Action Items: I sent an email requesting a case manager.  If this is unsuccessful, I will file a complaint/grievance with Tricare.  (On a good day, when my brain is working and I have enough energy.)

Reflection: How many people are in the Tricare or VA systems that are too ill or disabled to fight for the care they desperately need?  Who fights for the warriors (and their families) that can no longer fight for themselves?  Do anyone actively care whether they live or die?

Update: Case Manager assigned within 24 hours of email being sent.


When Your Medical Practitioners Don’t Believe You

I just read this blog post, and it reminded me of so many experiences I have had with medical practitioners.  Bad experiences.  Frustrating experiences.  I’ve been meaning to blog about them for a while now.  I guess this is the impetus to do so.

As Lisa recounted her negative experiences with medical professionals, I flashed back to some of mine:

The doctor who told me, “I’m not saying it’s all in your head, but…”

The doctor who angrily asked me what I wanted from her, and angrily snorted when I responded, “Improved Quality of Life!”

The doctor who didn’t know what exactly was wrong with me, but wanted to give me Prozac to make me “easier to deal with.”

The medical practitioners (plural) who have endangered my life by prescribing medications that could cause a patient with my (known) condition to have a stroke.

The PA who simultaneously prescribed TWO medications that could give me a stroke, even though I pointed this out to him.

The pharmacist who wanted to fill these prescriptions, even though I pointed this out to her.

The doctor who prescribed a medication that caused me to lose one year of my life to clinical depression.

The doctor who refused to help me titrate off of this medication ( a gradual decrease of dosing; required in this case because stopping cold-turkey could induce seizures).

The multiple doctors/PAs who ignored symptoms that “didn’t fit.”

The multiple doctors who refused to believe that I had torn ligaments in my arm, and would not refer me for MRIs, which led to me almost losing the ability to use my wrist for the rest of my life.

I used to fly an  Air Force jet worth over $600 Million.  I was trusted to safely fly that aircraft, conduct sensitive missions, and keep all of the personnel onboard safe.  But healthcare practitioners treat me like an idiot, despite the fact that I frequently know more about my specific conditions than they do.

I respect the health care providers who say:

“You know more about this than I do.”

“You are the expert on your own body.”

“You have become your own specialist.”

“I will refer you to the specialist you are requesting, because this is beyond my area of expertise.”

I do not respect the ones who say:

“You don’t know what you’re talking about.”

“You couldn’t possibly have that.”

“I’ve never heard of that.”  (“And I don’t want to learn about it”… is implied by their actions.)

“You don’t need a specialist, I can treat this myself.”  (Usually followed by prescribing the medications that can give me a stroke.  NEWSFLASH: You don’t know as much as you think you do, and you’re gambling with MY health!)

“I don’t think the medication I prescribed is responsible for that (known) side effect.  Just give it a while longer to take effect/take these other medications to treat all of the many side effects.”

And recently, as I have explained to multiple doctors/PAs/Nurse Practitioners that I have found recent research that seems to explain EVERY ONE of my symptoms, and therefore I believe I have found my diagnosis:

“I don’t believe that’s a real thing.”  (As if ignoring research will make it go away.  If we all choose to “not believe” in cancer, will it go away?  No?  Well, then, neither will my condition.)

I have had 15+ years of frustrating experiences with Tricare, as my health condition has declined from chronic to chronic, debilitating.

I cannot work, and I cannot continue my education.

When I was healthy, I thought that doctors were like mechanics: If you “got broke,” you went in and they fixed you.

I have learned that sometimes when you get broke, it can’t be fixed.  And sometimes, doctors don’t really care if you get fixed – they get paid to see you for 15 minutes, or perform a specific procedure, NOT to think, question, or improve the patient’s quality of life.

I know that there are good healthcare providers out there.  But I haven’t met very many of them.

Bottom Line: In my experience, most healthcare providers are neither capable, nor desirous, of working with patients who have complicated health problems.

Weekly Wrap-Up (24-28 October)

In case you missed it (ICYMI), here’s a list of the links that appeared on One Sick Vet’s Facebook page this week:

Monday: New post

Sometimes the Stars Align – But You Still Have to Check Your Six

Tuesday: More problems at VA hospital in Chicago


Wednesday: Wearable tech not shown to help people lose more weight than standard weight-loss techniques


Thursday: Good news! Tricare has updated preventive screening standards to align with “the American Academy of Pediatrics’ standards for care of well children over age 6.” Tricare will now pay more (and military families pay less) for certain preventive care screenings


Friday: Since the 2017 cost-of-living adjustment (COLA) is so small (.3%), some retirees may be on the hook for Medicare Part B premium increases


Sometimes the Stars Align – But You Still Have to Check Your Six

Just a quick update to explain why it’s been so quiet on the blog this month.

I finally had the “do-over” for the surgical procedure that was cancelled when I had the allergic reaction to the antiseptic.

Because I had lost confidence in the VA hospital, I switched from handling this procedure through the VA to handling it through Tricare.

In an interesting twist of fate, my new doctor has the same rare allergy that I do, which meant I didn’t have to worry about accidental exposure to that substance in the operating room.  Bonus!

However, as it turns out, I still had to remain extremely vigilant.  Although my allergy is clearly marked in my records, few people seem to understand how this allergy translates to real life, which results in interactions such as these:

[Scene: Pre-Surgery area]

Nurse 1:  Hi, I’m Nurse NAME, and I’ll be going over your paperwork with you today.  How did you clean prior to surgery?

Me:  I took a shower last night and a shower this morning.

Nurse 1: With soap and water?

Me: Yes.

Nurse 1: Were you given the pre-surgery paperwork suggesting you cleanse with Hibicleans prior to surgery?

Me: Yes.

Nurse 1: And did you follow those procedures?

Me [mildly sarcastically]:  No.  I’m allergic to Chlorhexidine, so I thought that would be a bad idea.

Nurse 1: Oh.

[Note: This means that the military hospital gave me a standard pre-surgery paperwork package instructing me to clean myself at home with a substance to which I have a documented allergy.  There is apparently no control in the hospital procedures for this mistake.]

[Scene: Pre-Surgery area.  Later…]

Nurse 2 (LPN): Ok, I’m here to get you prepped for surgery.  Do you have any allergies?

Me: Yes, I’m allergic to Chlorhexidine.

Nurse 2: Ok, I see that in your chart.  I’ll write that on your wristband.  [Writes on wristband, and attaches it to my arm.]  Ok, now I’m going to insert your IV. [Opens IV kit.]

Me:  Are you going to use an alcohol wipe to clean the site?

Nurse 2: No, I’m going to use the wipes in the IV kit – Chloraprep wipes.

Me [Firmly]: No, you’re not.  I’m allergic to those.

Nurse 2: Really?

Me: Yes.  They contain Chlorhexidine.

Nurse 2: Oh. …  Ok, I guess I’ll go find some alcohol wipes.

[Note: This indicates that the hospital does not have special IV kits for individuals with Chlorhexidine allergies, which is somewhat understandable given that it is a rare allergy.  However, it also indicates that medical personnel are inadequately trained on Chlorhexidine allergies and required modifications to standard procedures.]

Bottom Line: Given the lack of awareness by medical personnel of Chlorhexidine allergy (an antiseptic widely and frequently used in the medical field) and its practical implications (changes to materials used in standard procedures), I am deeply grateful that my surgeon has the same rare allergy and could maintain a safe environment for me in the operating room.  I am particularly grateful for that given that (1) I had to be extremely vigilant to avoid exposure (and another allergic reaction and cancelled surgery) prior to surgery, and (2) I could not maintain vigilance in the OR since I was anesthetized.

If you have a similar rare medical allergy, please learn as much as you can about sources of exposure, and be very cautious to avoid exposure in medical environments.  Do not rely on medical personnel being informed and aware – they probably aren’t.

Note: Check Your Six is an aviation term meaning to watch for attacks from behind.  It more broadly means to be situationally aware and to maintain vigilance.

Crew Dog and the Case of the Faulty Health Paradigm

A paradigm is a model or example of something, or the framework or mindset we use to understand or make sense of things.  When we subscribe to a paradigm, it often means that we choose to see things in only that way.  What do you see when you look at the picture above?  Can you see it in more than one way?*

Often, in business, we hear people talk about a paradigm shift, which means accepting a new way of looking at or thinking about things.  The opposite of a paradigm shift is paradigm paralysis, which is “the inability or refusal to see beyond the current models of thinking.”

I was stuck in a paradigm, or suffered from paradigm paralysis about an aspect of my health for many years, and it basically took a whack upside the head (figuratively speaking) to make me change that paradigm.

The paradigm I was stuck in was this: I don’t have allergies.

I never had any health problems when I was growing up.  I was blessed with excellent health until my mid-thirties.  I didn’t wheeze and sneeze like the people in the allergy commercials.  Surely I didn’t have allergies.

Not only did I believe that I had no allergies, but the one time I went to a (military) doctor because I wasn’t feeling well and I described my eyes as “itchy” the doctor quickly reprimanded me to never say that, because itchy eyes were a symptom of allergies and aircrew could not have allergies.  Since I didn’t want to lose my aircrew status, I never again described my eyes as itchy.

Years later, I started having very concerning symptoms.  I suddenly developed vertigo, which was quite alarming.  I was sitting in a chair reading when, out of nowhere, it felt like I did a front cartwheel.  My inner gyros completely tumbled.  I felt like I had moved violently, even though I hadn’t moved at all.  I dropped my book, grabbed the arms of my chair, and tried to figure out what the heck had just happened.

As it turned out, it took quite a while to figure that out.  I saw lots of specialists during that time.  I had diagnostic tests to rule out brain tumors, inner ear tumors, and…allergies.  The allergist administered a skin prick test, left me sitting in the waiting room far too long, and had trouble reading the results on my arm.  I, of course, didn’t think I had any allergies, and wasn’t expecting them to find anything during this test.  I had noticed one area on my arm react strongly, but the allergist smugly informed me that that particular area had been the control – it was pricked with histamine.  Of course I had reacted to that, I was told disdainfully.

The allergist peered at my arm, ran their fingers over and over the area, and finally pronounced that I was probably allergic to birch trees and penicillium mold.  I asked if that meant I was allergic to penicillin (it runs in my family).  The allergist said it was possible.  [I learned many years later that being allergic to penicillium mold *does not* mean you will be allergic to penicillin the antibiotic.]**

I asked about the allergy to birch trees, and was told to just avoid being around them.  I was given no other information or guidance.***  I decided the allergist wasn’t very competent, and went on with my life.

Next I developed frequent excruciating headaches.  Eventually the headaches and the exclusion of other causes led to a diagnosis of migraines and migraine associated vertigo.

I began to learn about migraine triggers – things that can contribute to having a migraine, such as barometric pressure changes; bright, flashing, or fluorescent lights; and foods.  People with migraines have reported that they were more likely to have migraines after eating certain foods, although not everyone responds to all of the same foods.

Known culprits are red wine; aged cheeses; processed meats; chocolate; citrus fruits; and foods containing MSG or aspartame.  (There are more, but these are some of the biggest culprits.)

I started eliminating many of these foods from my diet, and my symptoms abated somewhat.

During this time, I had also developed a perpetually stuffy nose that seemed to get worse prior to and during a migraine.  I saw an ENT, and was diagnosed with chronic sinusitis.  For years afterward, whenever I mentioned to a new doctor that it seemed to be linked to the migraines, I was told that stuffy nose was not a migraine symptom, and the doctor ignored that symptom.

Fifteen years after my trip to the allergist, I had an allergic reaction to a medicine (Chlorhexidine) I was administered in a hospital.  Since Chlorhexidine is an antibiotic that is widely used as an antiseptic and disinfectant in medicine, dentistry, and  in pharmaceutical and cosmetic products, I figured I’d better see an allergist to discuss how I was going to avoid Chlorhexidine for the rest of my life.  I also wanted to know if I was allergic to any other antibiotics, since I still didn’t know whether I was allergic to penicillin or not.

This allergist was very thorough, and asked me a lot of diagnostic questions.  We discussed my Chlorhexidine allergy.  And then he said, “You probably also have a mold allergy.”

Here’s where the paradigm paralysis makes me look pretty stupid.  Even though I had been diagnosed with an allergy to penicillium mold, and even though I had known for years that I was sensitive to mold in my environment (moldy basements, moldy government buildings, water-damaged areas in homes), it had never occurred to me that I was *allergic* to mold (because I don’t have allergies).

I didn’t even know that mold was a common allergen.

I told the allergist that I had never even considered that I might have allergies, because “aircrew don’t have allergies.”  He laughed, and said, “At least, not until after they’ve retired, right?”

My new allergist gave me a mold elimination diet to follow, for diagnostic purposes.  It sounds crazy, ‘cuz we don’t go around knowingly eating mold, right?  Well, actually…  That penicillium mold I’m allergic to?  It’s used to create Brie and Camembert cheeses.  Two of my favorites, that I started eating right around the time my migraines became frequent and have been eating ever since – because the first allergist *never told me* I should stop eating them!

Penicillium mold is also used to create “veiny” cheeses, including Roquefort, Blue, Gorgonzola, Stilton, etc.  While I ate these cheeses much less frequently, I did like to have Gorgonzola (often found in four-cheese blend) on my pasta.  Fortunately, these cheeses  were all categorized as “aged” cheeses, which I had eliminated from my diet early on because they are known migraine triggers.

Back to the mold elimination diet: Anything pickled, fermented, cured, aged, or cultured contains mold.  Dried products (fruit, nuts, coffee, tea) may also be contaminated with mold.

The cultured yogurt that I was eating because it contained “good” bacteria and was good for my health – was making me sick.  Before I began the mold elimination diet, I ate yogurt for breakfast one last time and my nose got so stuffy that I had to breathe through my mouth.

After three days on the mold elimination diet I could breathe better than I had in fifteen years.

After two weeks on the mold elimination diet, I felt better than I had in many years.  My energy level was much higher, and the incidences of “brain fog” were much lower.

I also don’t think it’s a coincidence that the mold elimination diet prohibits me for eating every food that is a known migraine trigger.  I am currently exploring the possibility that my migraines are linked to this underlying allergy.  [Update: see this Migraine diet]

I have subsequently returned to the allergist for two rounds of testing: skin prick and injection (blog post to follow).  Of the identified 100,000 types of mold (there are 1.5 million, but many are unidentified), there are allergy testing samples for 15 types.  I reacted to Penicillium and Aspergillus, which are both common indoor molds.

My allergist tells me that it is less common to do allergen elimination diets these days, particularly for something like a mold allergy.  In fact, it’s hard to find much information about mold elimination diet on the internet (see below).  I’m glad I happened to get an allergist who had this in his “bag of tricks,” because this diet has already had a radical impact on my health.

Are there assumptions or paradigms about your health that might be false?  If you are dealing with a chronic health condition and you haven’t had success treating it, it may be time to go back and challenge previous assumptions and paradigms.  After all, I “knew” I didn’t have allergies…

*This is a classic perception image.  You might see a duck facing left or a rabbit facing right.  Many people have trouble being able to see both, or switching from seeing one to seeing the other.

**NOTE: For more information on Penicillium mold, and supporting data that “hypersensitivity to Penicillium mold bears no relationship with hypersensitivity to the antibiotic Penicillin,” see this article.

*** My new allergist informed me that if you are allergic to birch trees, you may have cross-reactions to certain foods, including celery, apples, or carrots.

NOTE: For more information on mold in general, see these Centers for Disease Control (CDC) FAQs.

NOTE: For more information on mold allergy, see this page on the Asthma and Allergy Foundation of America website or this page (and associated pages) on the American Academy of Allergy, Asthma & Immunology website.

NOTE: For more information on the mold elimination diet, see this example.  [This is not my allergist or ENT and I am not endorsing this practice or being compensated by them in any way.]

P.S. – Have I had a mold allergy my whole life, and just didn’t know it?  Or did it develop in adulthood?  I don’t know.  Either is possible, although adult-onset seems more likely, given the lack of symptoms prior to my thirties.  Here’s a good article on adult-onset allergies and asthma.  [Again, this is not my allergist and I am not endorsing this practice or being compensated by them in any way.]

Health Hack: How to Select Properly-Fitting Eyeglasses

Long ago, when I was young and had better than 20/20 vision, I sat in a briefing room for training day and the flight doc announced to us all that, despite our current acute vision, we would all need reading glasses someday – probably by the time we were forty.  Most of us, including me, scoffed.  “No way!  My eyes are great.  *I’ll* never need glasses!”

Sadly, the flight doc was right.  Just before my 39th birthday (didn’t even make it to 40 – bogus!) I started needing longer arms to read things.  Teenagers would bounce up and shove phones in my face to show me something, and I’d have to make them back up.  Whippersnappers!

I didn’t want to start wearing glasses because I didn’t want the hassle.  And I only needed them to read up close.  Solution?

I remembered a Marine aviator from my impressionable youth who used to brag that he just bought “cheaters” at the drugstore.

So I went to my local superstore and tried on the sample glasses by the pharmacy to find the right magnification, and bought a multi-pack of those magnifying reading glasses.  I don’t remember if they were one-size-fits-all, or if they came in small, medium, and large sizes.  I just opened one of the (resealable) packages, tried them on, and decided the fit was ok.

I put a pair on my desk, a pair in my pocket, and a pair in my vehicle, and that solved my problem for several years.  They didn’t look spectacular (ha!) but they did the trick.  They tended to slide down my nose a bit when I was reading for an extended period of time, but they were cheap and easy.

The cheaters solved my problem for several years, but my near vision gradually got worse.  Eventually people started to get blurry at conversational distances.  They started to feel like “close-talkers.”  I’d try to casually back up so they weren’t blurry any more, but they’d close the distance.  Can’t do that dance for long without looking like a freak.

Since I now needed glasses for more than just reading, I decided it was time to start wearing glasses full-time.  I went to the optometrist and got my prescription, but of course Tricare doesn’t cover eyeglasses.  So I went to a local eyeglass store and got totally screwed.  In the interest of blog length, I will spare you the gory details.  Let’s just say I wound up several hundred dollars poorer with a pair of glasses that didn’t fit correctly, didn’t solve my vision problems to a satisfactory level, and, therefore, didn’t ever get worn.  I went back to my cheaters.

My first pair of prescription eyeglasses are still rotting in a desk drawer.

Life went on, and I made due with the cheaters for a few more years.  My near vision continued to deteriorate, but Tricare will only pay for an optometrist visit every two years so I had to wait.  Two-plus years later, I got my new prescription and decided to buy new glasses from a membership warehouse.  I figured the glasses would be cheaper there, and they wouldn’t try to pressure-sell expensive designer frames to me.

I went to the membership warehouse and was shown a couple of frames that were reasonably priced and looked decent.  My optometrist had suggested that, instead of trying to make one pair of glasses work for everything (a tri-focal progressive lens), I get two pairs of glasses – one for computer work and reading, and one for everything else (both bi-focal progressive; one mid & near distance and one mid & far distance).  The salesperson suggested I get two different styles of frames, so I could easily tell them apart.

For less than I paid for my first pair of prescription eyeglasses at an eyeglass store, I got two pairs of prescription glasses from the membership warehouse.  Unfortunately, neither of them fit.  After several months of returning my glasses to the warehouse for adjustments, I spent a day researching eyeglasses fit (see previous post, How Many People’s Jobs Do I have to Know How to D0?).  I learned quite a lot.

I had repeatedly told warehouse employees that my glasses felt too tight on my nose.  They responded by adjusting the glasses’ arms/temples, repeatedly. Did you know that glasses come in different bridge sizes (as in, the width of the bridge of your nose)?  I didn’t.  Apparently they didn’t either.

I learned I had frames that were ~2-4mm too small across the bridge.  The temples, that I had repeatedly suggested were too short, were at least 5mm too short.

Armed with my newly acquired knowledge of frame fitting, I returned to the membership warehouse.  The pair of glasses that fit least-badly were finally adjusted to my satisfaction (more or less).  The other pair (with a smaller bridge size) were returned, and I selected a replacement pair with a wider bridge and longer temple pieces.  I would have preferred to return both, but that was the best compromise I could get.  (Initially they were refusing to replace either pair.)

How can you avoid my mistakes?  Knowledge!

Although I am not endorsing this company, this page provides a decent overview of eyeglasses frame measurements/fit.  Unfortunately, none of the websites I could find had information on how to determine your eyeglasses size if you didn’t already have a pair of glasses.  One recommended I use a ruler to determine the width between my temples, which would give me an idea of total frame width.  Others recommended I just go to a store and try a bunch on.

It turns out, when Spousal Unit got glasses for the first time, the technician used calipers to measure Spousal Unit’s various facial dimensions.  Spousal Unit’s first pair of glasses fit perfectly.  Go figure.

Eyeglasses frames are typically labeled with their dimensions: the lens width, bridge size/width, and temple length (in that order).  These dimensions look like this: 52 [symbol that looks like a hollow square] 18 140.  The dimensions may be on the temple piece (arm) or the bridge.  Sometimes the first two dimensions are on the bridge and the temple length is on the temple piece.  They might even be on the ear piece!  For examples of what you’re looking for, see here (again, not a product endorsement).

Lens width (aka eye size) is the horizontal width of the frame’s lens (in millimeters).  Lens width typically ranges from 40-62mm.  This dimension is given for one lens, so you must double this and add bridge size and end piece size to get total frame width.  [The end piece is the part of the frame that connects the outer edge of the lens frame to the temple/arm.]

Bridge size is the distance between the closest points of the two lenses (in millimeters).  This is the space where your nose goes.  Bridge size typically ranges from 14-24mm.  Temple (arm) length is measured along the length of the temple from one end to the other and also includes the bend.  Temple length typically ranges from 120-150mm, but often only by multiples of five (130, 135, 140, etc.).  It is important to have enough length so the temple sits horizontally and does not tip up over the ear.

Lens height is often not labeled on eyeglasses frames, but may appear as the last number of the sequence.  It is the height measured vertically from the top to the bottom of the lens.  Lens height is important for bi-focal or progressive lenses as there needs to be enough area for the multiple parts of the prescription.

Once you get a pair of glasses that actually fits, write down the dimensions!  (The printing may wear off your frames over time.)

When you shop for your next pair of glasses, make sure you select a pair that is +/- 2mm for the lens width, +/- 1mm for the bridge size, and +/- 5mm for the temple length (different styles may fit a bit differently).

If you are concerned about your cosmetic appearance while wearing glasses, it is recommended that your eyes be nearly centered within the width of each lens.  This site (again, not a product endorsement) gives more information on fitting glasses for various types of faces (close-set eyes, wide face, etc.).  In particular, their information on bridge location was very useful to me.  You can also google information about face shape and corresponding frame shapes.

I’ve settled for a look I call “Goofy as hell, but at least I can see and I’m not in pain from glasses that are too small.”  I think it’ll catch on. #trendsetter #form_follows_function

How to be attractive: I still don’t know.  I think I’ll just hide Spousal Unit’s glasses.

Have you figured out how to procure glasses that fit, are attractive, and don’t cost an arm and a leg?  Please share your knowledge with us.  I need all the help I can get.

Managing Your Own Healthcare: How Many People’s Jobs Do I Have to Know How to Do?

My personal Tricare experience: I have received several years of harmful care, after decades of inadequate care, from Tricare.

Recently, my soon-to-be-former PCM defended his negligent/health-threatening care by telling me that I had not been aggressive enough in managing my own care.  I countered that aggressively managing one’s own healthcare is very difficult when one has a chronic debilitating condition (especially a condition that affects one’s cognitive abilities).

But today I’m having a good day, abilities-wise, so let’s talk about fighting fire with fire.  You want me to aggressively manage my own healthcare?  Look out, buddy, you just summoned a pissed-off veteran, and you’re about to regret it very, very much.

A friend of mine has a saying about dealing with others, especially those who work in any area interacting with clients/customers.  When encountering roadblocks in daily life having to do with the ignorance, apathy, or incompetence of others, my friend asks exasperatedly, “How many people’s jobs do *I* have to know how to do???”  (Meaning, since you can’t do your job correctly and give me the information and assistance I need, I will have to learn all of the information, procedures, laws, regulations, etc. myself in order to get the result I need.)

We have decided that the answer to this question is “ALL of them.”

ALL of the People.  ALL of the Jobs.

To be fair, there are some *awesome* people in this word who like their jobs, know how to do their jobs well, and like helping others.  When these magical unicorns cross your path, you do whatever you can to make them stay in your life, and you let them know how appreciated they are.

For the Non-magical-unicorn days, which is most of them, you learn how to do ALL the jobs.

Alright, soon-to-be-former PCM, you want me to aggressively manage my healthcare?  You got it.

Today I visited a Tricare Patient Advocate.  I walked in to the largest MTF near me, went to the information desk, and asked for the Tricare Patient Advocate and they hunted around until they found one, who came out and spoke to me face-to-face.

[I had previously located a Tricare Patient Advocate email address for a local advocate.  I emailed in November, and am still waiting for a response over five months later.  (Not the same advocate as the one I spoke to today.)]

The Patient Advocate gave me the contact information for the DoD’s Interactive Customer Evaluation (ICE).  I am going to contact ICE and provide “customer evaluation” on the negligent care I have been receiving, such as waiting 27 months for an MRI/Arthrogram of my wrist, even after I specifically told my soon-to-be-former PCM that my shoulder orthopedic surgeon suspected that I could have a torn ligament in my wrist, and then requested that my PCM submit a referral for an MRI and Arthrogram, which he did not do.

I will tell them that I gave up on ever receiving the care I needed from Tricare, and instead requested an MRI/Arthrogram from the VA, which I received within 6 weeks and which confirmed that I have *two* torn ligaments in my hand/wrist.

There are a few other things I will discuss with ICE about the inadequate care I received from this PCM…

But, next, after speaking to the Patient Advocate and confirming that my PCM did submit a request for referral to a wrist orthopedic surgeon after I confronted him with the results of my (VA) MRI/Arthrogram, I went home to aggressively manage my referral.

I called my Tricare region’s customer service number.  I never reached a human being. (ALL of the People. ALL of the Jobs. ALL of the Computers?)  I chased menu options long enough (15-20 minutes) to figure out that I would not get the level of information I needed from a machine.

So I bit the bullet and created an account on my region’s Tricare website.  I had been avoiding creating an online Tricare account, given the government’s track record on protecting personal information.  I don’t want my health information compromised.

But I needed access to the information, which I got after I created my account.  I was able to see the referral letter and, most importantly, the authorization number.

There are several useful pieces of information on Tricare referral letters.  If you keep reading past the name and contact information of the healthcare specialist to whom you have been referred, you will see this sentence: “This authorization is valid for the dates and service codes that follow on the back page.”  Keep reading until you reach the dates and service codes.  Make sure that your treatment takes place with the date range, and that you do not receive any treatments that were not authorized, or you will have billing problems with Tricare (as in, they may refuse to pay).

If you keep reading past that section, you will see a section titled “If You Would Like to Choose a Different Provider.”

Did you know that if you are not referred to an MTF, but are instead deferred to network, you can choose to see *any* in-network provider of the same specialty?

Also, as per the referral letter, “if your authorization number begins with a 7, you do not need to notify us of a change in provider.”

[Authorization numbers can also begin with a 4, in which case, you *do* have to get prior authorization to switch providers.]

***CAUTION: “You may not switch providers if you have already begun seeing a provider for the service authorized in this letter.”

Armed with that information, and all of the research I had done on orthopedic wrist and hand surgeons since my (very-belated) diagnosis, I called the office of the in-network surgeon I had selected, and scheduled an appointment for later this week.

This probably shaved several weeks off my wait-time, instead of waiting for the referral letter to come in the mail and then trying to figure out how to change providers.

The Patient Advocate also gave me advice on how to switch to a different PCM, given the current constraints of the system (patients being forced to use PCMs at MTFs only; no network PCMs; MTFs not accepting new patients due to being over-capacity).  We decided it would be best to remain with my soon-to-be-former PCM until the wrist/hand surgery is complete, so as not to cause hiccups in the system.  But I will be switching to a different PCM and a different MTF as soon as that is complete.

Meanwhile, I continue to receive excellent care for my other health issues from the local VA facility.

As far as resolving my issues with Tricare, I followed the chain-of-command, as well as rules of common decency.  I tried resolving my inadequate healthcare issues first with my PCM, who got defensive and hostile.  Then I went to the Patient Advocate.  Next I will file an evaluation with ICE.  I will also be completing an Army Provider Level Satisfaction Survey (APLSS).  If I still don’t receive a satisfactory resolution, I will continue to pursue the matter (on the days my health permits me to battle).

I have no illusions that my PCM will change his methods as a result of these actions.  He is impervious to feedback, and I’ve seen much worse healthcare providers remain in the military healthcare system, sadly.

The best I can hope for is:

  1.  To insist I get the care I need for my health conditions and injuries
  2. To insist the providers of this care are highly competent
  3. To hold this PCM accountable for his negligent care by reporting it
  4. To provide helpful information to others who are dealing with similar situations

I suspect by the time I am done, my soon-to-be-former PCM will regret having ever told a pissed-off veteran to be more aggressive about their healthcare.  Mischief, I mean Healthcare, Managed!