Health Hack: Using a DE (Double edge) safety razor

Some things in life are intimidating when you first attempt them – like jumping out of an airplane, getting Botox injections, or using a safety razor.

Backstory: I started using a cartridge razor (the kind with the disposable heads [cartridges] but permanent handle) decades ago.  I was thoroughly, completely, and in every other way satisfied with my razor.  And then disaster struck.  

I dropped my razor one time too many, and a tiny plastic piece broke off – a piece which, it turns out, was critical to keeping the cartridge heads in place.  I tried to keep using my trusty razor, but the head kept coming off while I was shaving – not ideal, to say the least.

Since I had a significant cache of cartridges (bought on sale at the BX/PX), and I had always been happy with my razor, my first thought was to buy a replacement handle.  No joy.

It turns out that those handles are no longer being manufactured.  Furthermore, I could not find one on Amazon, eBay, or anywhere else on the internet.  In fact, I discovered that replacing that particular handle was a  Holy Grail quest.

My search led me to shaving forums – oh, yes, there are multiple forums online, on which shaving enthusiasts debate the relative merits of cartridge razors vs. safety razors, various shaving brushes, shaving soaps/foams, and even razor blades.  It turns out, my cartridge razor, unbeknownst to me, is considered one of the last good ones, before the handles became all plastic, and the cartridges kept sprouting more and more and more blades.

People from all over the world were searching for replacement handles for my razor, but the lucky few who had found them were not parting with them.  Even individuals who nearly exclusively shave with safety razors or even straight razors clung to their [brand name] cartridge razors for travel, or just nostalgia.

Having failed to procure a replacement handle for the world’s best cartridge razor, I turned to Plan B.  Although cartridge razors generate less garbage than plastic disposable razors, the cartridges are still thrown away after use.  But safety razors only generate used steel razor blades, which can be recycled (please use a blade bank or a tin can to safely house the blades when you recycle them – don’t cut some poor unsuspecting person or animal who encounters your used blades to shreds!)

I had long been thinking that if anything ever happened to the world’s best cartridge razor, I would switch to a safety razor.  Many people who are trying to reduce the amount of garbage they generate and the impact they have on the planet have switched to them – safety razors are typically all metal, and generate no plastic waste at all.

The process of selecting a safety razor to purchase was arduous – I read blog posts, search engine results, and many, many, shaving forum discussions.  I did not find a safety razor with the same handle length as the best cartridge razor in the world.  My cartridge razor is 5 inches from the top of the cartridge head to the end of the handle, and has always felt very good in my hand.  I could not find any safety razor this long.  The best I could find was 4 1/8 inches from the top to the end of the handle.

Having selected the razorI then needed to select blades.  I learned that quality razor blades are made in many countries: Sweden, Germany, Egypt, Russia, Israel – even the U.S.  According to the forums, some brands of razor blade are “more aggressive” than others.  This is important if you have sensitive skin or if you are a beginner.

One of the significant differences between cartridge razors and safety razors is that the head of a cartridge razor swivels to maintain a fairly constant angle between the blade(s) and your skin.  Safety razors, on the other hand, hold the blade in a fixed position, and the human must adjust the blade angle manually in response to the changing contours of the surface being shaved.  Fortunately, since humans have wrists, this is fairly easy to do.

However, there can be a bit of a learning curve during the transition from cartridge razors to safety razors.  Therefore, the forums recommended beginning with a “milder” or “less aggressive” blade.  I narrowed my list of possible blades down to two, and ultimately ordered the brand that could be delivered to me on the same day as the new razor.

The initial shave: It is a bit intimidating to unwrap the double-edged razor blade and place it in the razor.  Especially if, like me, you only saw videos of safety razors with butterfly clasps, but the razor you purchased doesn’t open that way.

Unable to “open” my razor to insert the razor blade, despite my best efforts, I turned to Google, and eventually discovered how to work my razor (the entire head screws off, then it comes apart in two pieces, you insert the blade between the two places, sandwich them together, and screw it back on the handle – carefully).

Having watched several tutorials, I gave it a go, using the same old soap I always use.  I was pleasantly surprised to discover how easy it was.  The intimidation was for nothing – the hair disappeared easily, with fewer strokes than I was used to making, and I didn’t nick myself at all.  Although I started out slowly, I soon was shaving with my normal speed.

Although there were a few moments when I missed the handle length of my old trusty cartridge razor, overall I was very pleased with my new safety razor.  I’d call it a successful experiment that will lead to a lifestyle change and less plastic in the landfill (and everywhere else plastic migrates).

Why is this a health hack?  1. No plastic.  2.  No garbage.  3. Many people report less razor burn and fewer ingrown hairs with the use of a safety razor.  4.  Less expensive – so you can spend your money on quality food, exercise, or other healthy things (or invest it in a retirement fund).

Intimidated by the thought of trying a safety razor?  Here’s a tutorial for men:

And here’s one for women.  (There’s an article and an imbedded video at this link.)

Have you tried a safety razor?  Why or why not?

 

How My Illness Has Made Me Like a (Stereotypical) Millennial

My entire life has changed as a result of having a chronic disabling health condition.  Here are some of the ways I’ve become like a stereotypical Millennial as a result:

  • I wait until the last minute to make plans (though not because I’m waiting to see if something better comes along – it’s because I don’t know if I’ll be healthy enough to participate).
  • I communicate with friends and family mostly through texts and social media (because I can do it on my terms, as my energy levels allow).
  • I have limited face-to-face communication (I’m allergic to fragrances, and seldom leave the house).
  • I do most of my shopping through Amazon Prime (due to that whole “seldom leaving the house” thing).
  • Netflix-and-chill binge-watching is how I spend entire days/weeks during a flare up of my symptoms.
  • I blog about my problems/experiences. 🙂
  • I use social media to find good restaurants (ones that make allergy-friendly meals).
  • I’m constantly looking for work, but currently unemployed.
  • Expressing myself with wild hair
  • Disillusionment with authority/experts – in my case, medical ones
  • It’s all about my smart phone (which is set with multiple alarms to remind me to take my various meds – from the time I wake up until the time I go to sleep).
  • I speak Internet: memes, music clips, video clips, gifs, pictures & emoticons all make communication richer.
  • I see tiny/minimalist/simple living as a way to live life on my own terms (those terms having been dictated to me by my illness).
  • I think technology is very useful (and hopes it brings the solution to my health problems).

To read more about Millennial research, see here.

To see how Millennial you are, take this quiz.

According to the quiz, I am 76% Millennial, while a typical Gen X’er is only 33% Millennial.  If I had a piercing or a tatt, I would have scored even higher.  (I intended to get my first tattoo this year, but, you guessed it, allergic!)  Having a tattoo would have made me 84% Millennial.

How has living with a chronic disabling illness or injury changed you?  How Millennial are you (and why/why not)?

If It’s Monday, the Air Force Must Be Threatening Legal Action

When I first fell and injured my arm, I went to my local military treatment facility for care.  As part of the paperwork, I reported that the injury was due to a slip-and-fall.  The paperwork seemed to indicate that since the injury occurred outside the U.S, the government would not pursue compensation from the resort.  I heard nothing further for three years.

No news is not good news, in the legal world.

After my fourth surgery to repair the damage from that fall, I again received paperwork from the government.  They stated that they were withholding payment to my surgeon until I completed the same form I had originally completed, detailing how and where the injury occurred.  Thinking this was odd, since I had already completed the paperwork over three years ago, I nevertheless completed the form again, and sent it in.  Again, I assumed that would be the end of the matter.

You know what they say about assuming things…

In addition to letters from the surgeon’s office inquiring as why my bill has not been paid, I have now received a letter from the Air Force Legal Operations Agency (AFLOA) threatening legal action against me, and suggesting that I should possibly retain my own lawyer.  In addition to the previous DD Form 2527 that I submitted, AFLOA is demanding I also submit “the attached MCRP Questionnaire…within 30 days.”  There are also threats of notification of First Sergeant or Commander if I am still active duty and do not return the form within 30 days.

So now, in addition to dealing with rehabilitation of the arm, beginning physical therapy for the knees, and pursuing diagnosis of the chronic, debilitating disorder from which I suffer, I need to defend myself against legal action from the Air Force because they do not want to pay for the health benefits Spousal Unit and I earned in active duty service to our country.

When the accident occurred, I remember being grateful that I had excellent medical coverage.  After the malpractice that occurred in the military’s treatment of my arm, and the current threatened legal action in an attempt not to pay for my treatment, I no longer consider my medical coverage excellent.

The deterioration of medical coverage for veterans, currently serving military members, and their families is a breach of contracts, both actual and psychological, that the government agreed to with members of the armed forces, in exchange for their selfless service.  We were promised full healthcare coverage for life.  Those benefits were earned through blood, sweat, and tears.  But they are being eroded.  The government is not living up to their end of the agreement.

Threatening to sue veterans because their treatment has become too expensive is disgraceful.  No veteran, service member, or family member should have to add the anxiety of threatened legal action (by the branch of service in which they selflessly served) to the burden of being sick or injured.  No veteran, service member, or family member should have to worry that their health benefits will be denied, or that their assets will be taken from them.

Does anyone know a lawyer with expertise in this area?  Apparently I have to defend myself against the Air Force.  Apparently the greatest fight of my life will not be in defense OF my country, but in defense FROM my country.  May God help us all.

Status Report 22 Sep 2017

Just a quick update today.  Hopefully more detailed post to follow.

The latest shoulder surgery seems to have gone very well.  Range of motion recovery is 3 months ahead of schedule, according to the orthopedic surgeon.  There is soreness during and after physical therapy, but the pain is gone.  The scars are also healing very nicely.  I am hopeful that this will have been the last surgery on this arm.  (The fourth time is the charm?)

Meanwhile, my knees have been getting worse.  (I know I haven’t talked about them on the blog before.)  Due to the drama with the arm, I had been not paying much attention to the fact that I was becoming less able to take short walks and climb up stairs.  But a friend came to visit recently, and my knees were hurting so much on a short walk we took that we had to seriously reduce our pace.  And this time, the effects lasted for at least a week.  Oh, and the stairs – I was hobbling up the stairs at home for at least a week, and some days I would just stay on one floor of the house to avoid the stairs.

Fortunately, I had a (very difficult to get) appointment with the VA not long after that.  My provider ordered x-rays and physical therapy for my knees, after diagnosing me with pes anserine bursitis upon physical exam.  And by physical exam, I mean she poked and prodded and twisted my knees until I was excitedly saying “Yes, it hurts when you push right there!” and “My leg doesn’t *go* that direction!”

The x-rays have been read, and the report confirms arthritis in both knees as well.  I already had a diagnosis of osteoarthritis from my VA intake exam, but had not been offered any treatment previously.  But my knees have deteriorated since then, and I welcome the chance to treat these aching knees.

More to follow soon, I hope, about ways to deal with arthritic knees.  Two steps forward, one step back.

 

Love Is…Green Slime

My diet (and my life) have gotten complicated.  I hope to write more about that soon.  Basically, I have been having allergic-type reactions to many foods I have previously been able to eat, and my diet is very restricted right now.

To go along with that, I have a complicated medicine routine.  My newest medicine has to be taken 4 times a day, on an empty stomach.  So I have a schedule of medications that begins when I wake up and goes throughout the day until I go to sleep, and requires me to deconflict one of my medicines from all the other medicines (and food), and requires that I take the new medication on an empty stomach (no food from 2 hours prior to 30 minutes after).  Yeah…

So I wake up, take the empty stomach med, wait 30 minutes, take another med, and eat breakfast, so that 1 hour later I can take my next med.  Did I mention I’m not a morning person, and don’t function very well when I first wake up?

The LAST thing I feel like doing half an hour after waking up is hassling with breakfast.

I used to eat several hours after waking up, when I had the capacity to deal with making food.  But now when I eat is dictated by my medicine schedule.  And what I eat is dictated by my allergic-type reactions.

Currently, I am having a drink for breakfast that we jokingly call “Green Slime.”  (You would probably call it green juice, or a green smoothie.)  We call it green slime because it looks like duckweed:

The recipe comes from one of the low histamine chef Yasmina Ykelenstam‘s cookbooks – she calls it green lemonade, although the recipe includes no lemons.  It’s mostly green vegetables, with apples as sweetener.  I also add chia seeds, for fiber and protein.

We first tried making green slime in the blender.  It’s do-able, but I don’t recommend it – for 2 reasons.  First, it’s hard on the blender motor.  Second, the consistency is like applesauce, which can be unpleasant to drink if you’re squeamish about textures.

Having determined that I liked green slime in theory, and would likely be drinking more juices, we bought a juicer.  I prefer a minimalist kitchen, and try not to buy extraneous kitchen tools, but this has proven to be a very useful device.  [And the slime is now a juice consistency, rather than an applesauce one.]  But I digress…

Because of my health condition, I need to eat very fresh foods.  So I can’t make green slime the night before and leave it in the fridge overnight.  Thus, every morning, veggies and fruit need to be chopped and processed through the juicer.  Working a knife within 1/2 hour of waking is not a good idea when you’re as out-of-it as I am in the morning.

It is highly probable that, left to my own devices, I would starve or die of malnourishment.

Fortunately for me, I am not left to my own devices.  Spousal Unit wakes up hours earlier than I do (for reasons that are completely inexplicable to me), and is gracious enough to prepare green slime for me every morning, even though Spousal Unit does not drink slime.

Each morning I take my first medicine, wait 30 minutes, take my second medicine, and then stagger out to the kitchen.  I open the refrigerator door and find a glass of green slime waiting for me.

Which means that Spousal Unit has cut up the fruit and veg, fed it through the juicer, poured the green slime into a glass, added chia seeds, stirred, and left the juice for me – every morning.

And all I have to do is drink it.  And then take my next medicine an hour later.  Totally do-able (most days).

And this is why I say “love is green slime.”  Thank you, Spousal Unit!

 

“Where Did You Take Your Urine?”

I’ve been getting diagnostic testing done to determine whether I have an autoimmune or autoinflammatory disorder. So far, some abnormal test results, but no diagnosis.

I had a follow-up appointment with a specialist today.  [I was hoping for a diagnosis.]  We were supposed to go over the test results. However, not all of the results have been returned to the specialist. The 24-hr urine collection sample had to be sent to the Mayo Clinic because they have the only lab in the US that can do some of the tests I needed.  And the results are M.I.A.

My doctor left the exam room, and returned with her nurse, saying, “This is my awesome nurse, [NAME].” I said, “Hello, awesome nurse [NAME]!” The nurse smiled, and responded, “Where did you take your urine?”

And even though I understood she meant, “Where did you deliver your urine sample, so we can start tracing it and hopefully get the test results?,” I couldn’t help but pause before responding, because what I was thinking was, “Now there’s a sentence I’ll bet you never thought you’d say before you became a nurse!”

And I also had to resist the urge to respond sarcastically with a list of all the cool places I had taken my urine: amusement park, carnival, swimming pool…

Once my inner dialogue had run its course, I responded with the name of the lab near my home to which I had delivered my specimen, so that they could ship it to the Mayo Clinic.

Hopefully we will be able to track down my test results.  I would prefer not to do the 24-hr collection again.

In the meantime, here’s hoping no one asks you: “Where did you take your urine?”

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.

WARNING: BEWARE SLIP AND FALL INJURIES!

Standing By to Stand By (And What It’s Like to Do a Spirometry Test)

I saw the specialist at a leading institution last week.  (Not the doctor in the picture, who is a random allergist/immunologist.)  It went about as well as can be expected.  But I don’t have any answers yet.

The specialist sent me for more testing.  More blood samples.  More urine samples.  (This will be my third 24-hr urine collection.)  Some tests are repeats (for verification).  Others are new.  One of the blood sample vials went directly into a bag filled with ice, since the component being examined is highly heat-sensitive.  First time I’ve seen that.

While I was at the leading institution, I also had a spirometry test.  This test measures how well your lungs are working.  It measures how much air you inhale and exhale, and how quickly you exhale.

I didn’t quite grasp how the test was supposed to work at first.  The assistant handed me a nose pincer that looked like two ear plugs on the ends of a clamp.

These are used to keep any air from escaping through your nose.

Then the assistant handed me the hose (with attached mouthpiece).

(I did not get to look at the display as the person in this image is doing.)

I was told to put the nose pincers on my nose, get a good seal on the mouthpiece, and exhale for 6 seconds.  This is the part that I did not understand.

I thought that if I needed to exhale for 6 seconds, I needed to pace myself. So I was gradually exhaling.  Apparently this is incorrect, because the test also measures how quickly you exhale, and I was told to exhale as hard as I could.

The assistant guided me through breathing “normally” through the mouthpiece for several cycles, then told me to take a deep breath, exhale hard, and keep exhaling until I was told to stop.

After a forceful exhalation, I didn’t feel like I had enough air left in my lungs to keep exhaling for 6 seconds, which is what I told the assistant.

I was told to keep a good seal with the mouthpiece and keep exhaling until told to stop, regardless of whether I felt anything was coming out.

We needed 3 good cycles of measurement.

On the first cycle, I exhaled hard and exhaled some phlegm.  I tried to keep exhaling without sliming their machine.  This may have compromised my performance.  (Didn’t mention this to the assistant.)  (Mouthpieces are sanitary, and are swapped out between patients, in case you were wondering.)

On the second and third cycles, I exhaled hard, and then felt like I ran out of air quickly.  I gave my best effort at exhaling for the entire 6 seconds, as the assistant was shouting, “Keep exhaling!  Keep exhaling!”  But I felt like no air was coming out.

Also, the nose pincers were sliding around on my nose, and I was concerned they would slide off, which was distracting.

Overall, the test was not difficult, nor was it painful or uncomfortable in any way.  You just sit in a chair and blow into a tube.  It is not difficult to inhale or exhale through the device.  It does not constrict your breathing.

But I thought I had failed the test.  I thought I should have been able to exhale noticeably the entire time.

Imagine my surprise when I was told that my “expiration” was better than normal!

This means that I probably do not have asthma, COPD, or other breathing conditions.  (I was not expecting to have any of these conditions, although it could have been possible to have allergy-related asthma.)

So today I am doing the 24-hr urine collection, and waiting.

I have a follow-up with the “expert” specialist in 8 weeks.

The specialist also gave me a prescription for another medicine to add to the ones I’m already taking.  If Tricare will approve the prescription, I can see how that works, and report back to the specialist at the follow-up appointment.

Bottom line: Saw the specialist.  Was told my hypothesis was worth exploring.  Was also told my symptoms are very difficult to diagnose, and we may never reach a diagnosis.  But the specialist is interested in helping me improve my quality of life.  The tests that were ordered make sense for an exploration of my hypothesis, and so does the new prescription.  The specialist was knowledgeable and empathetic.

So I am currently standing by to stand by.

Stay Tuned (We’re Going to Learn about Immunology)

I am scheduled to meet with an allergy and immunology specialist at a leading institution in one week (26 May).

Ever since the pre-op allergic reaction, I have been having continuing and strong allergic and allergic-type reactions.*  The distinction between the two (as I understand it) is that an allergic reaction occurs when your body produces Immunoglobulin E (IgE) antibodies to a substance.  These IgE antibodies trigger a reactive response to the substance, the symptoms of which we recognize as allergic symptoms.  An “allergic-type” reaction occurs when your body does not produce IgE antibodies to a substance, but your body reacts to the substance with the same type of symptoms (hives, trouble breathing, GI reactions, etc.).

So far, my allergy testing has revealed actual allergies to only two types of common mold and one type of food.  (Oh, and the obvious allergy to Chlorhexidine, which was real-world tested!)  But I am reacting to many foods, most things that contact my skin (plants, shampoo, bandages, etc.), and things I inhale – especially fragrances.  I frequently have to leave doctors’ waiting rooms and wait outside because I am reacting to a fragrance that someone is wearing.

I’ve had 2 allergists (and 2 dermatologists) shrug and say they don’t know what is wrong with me.  So now I’m going to see a more “expert” specialist, and see if s/he can figure it out.

*To be more accurate, I have been having reactions to mold for over 15 years – I just didn’t know they were allergic reactions.  When I mentioned my symptoms to doctors, they dismissed them, because the symptoms were not consistent with my primary diagnosis: Chronic Migraine.  Since the surgery, I have been having strong skin reactions as well, which are new for me.

Stay tuned, as I (hopefully) learn why my body is hypersensitive, and what I can do about it.

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.