“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.

 

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.

What It’s Like to Have a Visual Migraine (Scintillating Scotoma)

[This video, created by the Mayo Clinic, shows one representation of what a visual migraine, or scintillating scotoma, can look like.  Not all scintillating scotomas look like this, and they are not always associated with a migraine.]

WARNING: If you have no history of migraine headaches and you experience a scintillating scotoma, you should see your doctor, as this can be a sign of a serious health condition.

Scintillating scotomas are pretty trippy.  I’m glad I had read about them before one ever happened to me, or I might have been very concerned the first time I had one.

For people who have migraine with aura, there are other physical symptoms that go along with the excruciating headache.  A migraine is NOT just a “really bad headache” – it is a neurological event that can manifest in many different ways, such as cognitive impairment (brain fog) or dysfunction (unable to remember words); numbness, weakness, or tingling of body parts; balance and coordination problems; nausea; vomiting; fatigue; sensitivity to noise, light, odors, or touch; etc.

Please do not violate Wheaton’s Law and tell someone who suffers from migraines that you “sometimes get really bad headaches too.”  But I digress…

One symptom of migraine aura that some people are familiar with is visual disturbances.  These can be pretty spectacular.  [See some examples here. (No product endorsement implied.)]

Although I have had migraines for more than 15 years, I have only had 4 scintillating scotomas.  (In other words, it is not a common part of my migraine aura symptoms.)  The last two I have had happened while I was using my computer.  They began with slight blurriness – I wasn’t sure if my eyes were just tired, or my glasses were smudged, or something.  The blurriness starts out in a very small area, maybe the size of a dime in my field of view (but just on one side).

As I am determining what is causing the blurriness, I begin to notice that it’s actually a small blind spot.  And then when it begins to shimmer (usually at the same time I’m noticing the blind spot), I know for sure that I’m beginning to experience a scintillating scotoma.

Again, everyone’s experience is a bit different, but mine typically begin near the bottom of my field of view, and gradually the affected area expands and also moves slowly from the bottom of my field of view to the top of my field of view, then moves so far up that I can’t see it anymore.

I have experienced scintillating scotomas in each eye (they’re actually happening in my brain, but I’m describing the visual representation I perceive), but my scotomas never appear to be in the center of my field of view, or as if they are affecting both eyes at once.

In addition to the increasing blind spot and surrounding shimmering, I typically see jagged, zigzag designs around the perimeter of the spot.  My last scotoma was more bold geometric shapes than zigzags.  This portion of the image is colorful (reds, blues, greens, yellows), whereas the shimmery part is white/silver.

People who experience scintillating scotomas often describe the shape as a “backwards C.”  And I have had scotomas shaped like that.  But I think the shapes can vary.  My last one seemed more circular, with the shapes all the way around it, rather than just on one side.

The scotoma itself is not painful, in my experience.  Of course, it does disrupt whatever you are attempting to do visually.  (I had my first one right after sliding behind the steering wheel of the car one day – just sat there at the side of the road until it passed.)

The first two I experienced only lasted 10-15 minutes, but the last two have been closer to a half hour.  I find that I can see them better in the dark, and they’re really entertaining to watch (I guess I’m easily amused), so I now go into a dark room, lie back, close my eyes, and watch the show.

Of course, I typically get a raging migraine headache afterward, so I also take my migraine treatment medications at the beginning of the scotoma experience.  That’s trippy too – try walking through your house to get to your medicine cabinet with a blind spot in your field of view and possibly some balance issues too.  Then try finding your meds and taking them when you can’t really see what you’re doing due to an enlarging blind spot.

After a scintillating scotoma, some people get migraine headaches, some people don’t get the headache every time, and some people feel very weak or tired.

After the event, my vision returns to normal, although everything may seem a little blurry for a little while right afterward.  Since it’s actually happening in your brain, there are no effects on your actual eyes.

During my most recent scotoma, the headache actually started during the scotoma, and my tinnitus got very loud as well during the scotoma, but then decreased significantly afterward.  After the shimmering part and the colored shapes had disappeared, I still had a blind spot for about 5 minutes.  Then some general blurriness, and then my vision was basically normal, although I was very light-sensitive due to the migraine.

Again, blind spots can be caused by other things, such as a retinal or optical nerve issue, so please talk to your doctor if you experience a scintillating scotoma, or a non-scintillating scotoma.

But if you experience scintillating scotoma as part of a migraine prodrome, you can probably just take your migraine treatment drugs, relax, and enjoy the show before the headache begins.  That’s been my experience, anyway.

What have your experiences with scintillating scotoma been like?

 

Survival Minimalism: What Falls Away

Minimalism.  It’s a trend/movement that’s been picking up steam for at least a decade.

People are attracted to minimalism for many reasons.

Some accidentally – they travel with just a backpack, and decide life is better with less baggage.  But some become minimalists out of sheer survival – because their health is so poor they just can’t continue to live life the way they used to.

A smaller house/apartment, fewer things to maintain – choosing to downsize can make life easier to handle logistically and financially.  It can also make life easier to handle psychologically.  But, in many ways, shedding possessions is the easier course of action.

Shedding commitments is much more difficult.

Duty.  Responsibility. Taking Care of Others.  Social Responsibility.  Civic Duty.  Family.  Friends.  Job.  Church.  Volunteerism.

We are so busy, in our current culture.  We pride ourselves on how busy we are.  We compete with others over how busy we are, as if that is a symbol of our worth.  We are human doings, not human beings.

Until.

Until we get the news, or the diagnosis.  Until something happens that alters our priorities and shifts our perspective.

Until we remember that the privilege of being is the most important thing.

For a very long time, I tried to keep doing all the things.  I got sicker and sicker because I tried to power through it.  I “couldn’t afford” to be sick.  I needed to fulfill my responsibilities at work – one hundred percent or more.  I  had to fulfill my commitments to my family, and friends, and to the organizations for which I volunteered, and to the kids I mentored, and, and, and…

And then I woke up one day and couldn’t do ANY of the things.

I couldn’t keep the plates spinning anymore.  And they slowly started crashing to the ground…

I fought it for a long time, even after that.  “I can’t keep them all spinning, but I should be able to keep these three spinning.”  CRASH!  “Surely I can keep these two spinning.”  CRASH!!  “Come on! I can keep at least ONE spinning, right?”  CRASH!!!

And then I wallowed, frustrated and unwilling to believe that I could do NONE of the things.

But facts do not change simply because we do not like them.

And the fact is that I am currently dealing with either severe allergies or an auto-immune disease (or both?).

And suddenly life is becoming much more simple, due to survival minimalism.

I used to find it very difficult to get rid of papers and books.  Although I have been trying for years to downsize and become more minimalist, books and papers were the challenge for me.

I love books.  I love physical books.  I have resisted getting an e-reader because I like to hold books in my hands, and write notes in the margins, and highlight important parts of them, and even mark reference sections with book darts.  Book darts.

I once lived out of a backpack for a year – worldly possessions in storage, traveling the world.  Know what I missed?  My books.

But now… I am allergic to book mold.  And possibly to dust as well.

And, suddenly, old books and old papers cause an allergic reaction that makes me ill – for days.

So now I am parting with books, and reducing the papers (currently in binders, and in filing cabinets, and in stacks).

I will most likely purchase a high-quality scanner, to save some of the information on those papers, and an e-reader, to replace some of those books.  And, although parting with the books makes me sad, it also feels like freedom.  I don’t dither anymore over whether to keep a book or a document.

It has become very simple: It all must go, because it makes me ill.

The same thing is happening with my diet (post pending).  I have passed through the mourning period for all the foods I can no longer have (pizza commercials were torture!).  Now I can watch food commercials on TV with disinterest.  Easy to do, when you know eating it will make you sick for days…

Likewise for social obligations.  Initially, I felt guilty for all the obligations I could no longer fulfill.  But the current reality is that I can’t leave my house without getting ill.  The outside world is BRIGHT, LOUD, and full of FRAGRANCE.  Not to mention ALLERGENS.  So, if it’s not critical to my health (doctors’ appointments), I’m not leaving the house.  Sorry, not sorry.  You’re welcome to come visit me, if you’re not wearing FRAGRANCE (that includes scented laundry detergents and fabric softeners).

It’s getting all Oregon Trail up in here.

Remember playing Oregon Trail, and starting out with all the items you thought were essential, but jettisoning more and more of those items as the trip went on?  Survival Minimalism.

“But that’s a Family Heirloom!” “The Indians are gaining on us – toss it overboard!”  “But that has sentimental value!”  “The oxen are too weak from thirst – leave it by the side of the trail.”  Survival Minimalism.

Priority Shift.  New Perspective.  Life suddenly becomes very simple.

Do.  Or Do Not.  It has become a no-brainer.

I’m letting go of the things that make me sick.

I don’t “should” on myself anymore.  I do what I can for others, and I let the rest go.

The world rushes on past, in its busyness, and I am here, in my quiet eddy, learning how to be.  Striving to be…healthy.

It’s a crucible, and all the non-essential things are being burned away.

Survival Minimalism.  It’s not for everyone, but it might be for you.

Medical Procedures: Trigger Finger (Steroid Injection) Update

Update: I developed trigger finger in the same pinky finger approximately 10-11 weeks after elbow surgery (approximately 8 months after the first steroid injection), when the post-surgery therapeutic exercises began to put more strain on my finger.  I mentioned to my occupational therapist (OT) that my pinky finger was swollen and stiff, and that the joint near the top of my palm (the metacarpophalangeal joint) was very tender, sore, and warm to the touch.

My OT remembered that that was the same finger in which I had previously had trigger finger, and made an appointment for me with my orthopedic surgeon to get another steroid injection.  My ortho injected the joint approximately 12 weeks post-surgery, and said that if trigger finger comes back a third time, he would consider a surgical treatment.

Hopefully this will not be necessary, as my third New Year’s Resolution, which I did not share with you, is “No Surgeries in 2017!”

Some Thoughts on Medical Botox for Migraines and the VA

Last April, I received Botox injections for the first time to treat my migraines.  Last week I received my fourth series of shots.  Which means that when this cycle ends in April, I will have been receiving Botox injections for one year.

I had some trepidations before my first Botox injections.  But I was also hopeful that they would prevent my migraines, or at least give me some relief.  As it turns out, Botox does give me much better quality of life – for part of the quarter.

As I have mentioned before, the effects of Botox do not last a full 12 weeks for some patients.  But it could be worse:

Approximately 30% of patients with chronic migraine headaches do not respond to Botox.  For them, Botox does not provide significant relief.

Although I am VERY GLAD that I am NOT in the category of patients who do not respond to Botox treatment – i.e., for some people Botox does not seem to affect their migraines, and they get no relief – I am frustrated that the effects of Botox only last for 8-9 weeks of the 12 week cycle for me.

For me, the effects wear off 2-3 weeks before the end of the quarterly cycle, and then it takes another week to stop feeling bad after I’ve gotten the next series of shots.  So I only get relief for 8-9 weeks of the 12 week cycle.

Considering that Botox works better than any of the many, many other medications I’ve tried to relieve migraines, I am very glad that it does work and that I have decent quality of life for 2 months out of every three.

But it is so frustrating to know that I could feel better all the time if the VA would just allow a shorter interval between shots.

It takes about a week for the Botox to have full effect.  Not only do I stop feeling crappy, but my forehead stops responding when I try to move my eyebrows.  My forehead muscles are locked down, and nothing moves.

Toward the end of the cycle, I start testing my forehead muscles.  Once my eyebrows start to move again, I know the Botox is wearing off and I am going to start feeling crappy again.  The more my forehead muscles move, the less benefits I am getting from the Botox, and the worse I feel.

And there’s nothing I can do about it.

It is such a helpless feeling to know that the medication that allows you to function is wearing off, and you can’t have any more for weeks.

Can you imagine telling a patient with any other disease or condition that they must wait and suffer without medication for nearly one month each quarter?  It’s inhumane.

So today I sit and wait for the Botox to work its magic.

It’s hard to describe migraines to people who don’t have them.  It’s not just “a really bad headache.”  While the headaches can be excruciatingly painful, they are not the only symptom.  Migraines are a neurological event, which means they can affect the central nervous system, the cardiovascular system, and the vestibular system.

For me, on a bad migraine day I can’t think, because of the brain fog.  I will not be able to remember to do simple things like take my medications/supplements.  Food doesn’t taste good, and I will not be interested in eating.  Sometimes I will have nausea.  I will be incredibly sensitive to light and sound, and they will feel painful to me.  Flickering light is especially painful, and might even affect my sense of balance.  I may be dizzy and light-headed.  Smells are also very strong and unpleasant.  Even on a “good” day, if someone touches me and the odor of their perfume or cologne gets on my clothes, I will have to go home and change my clothes, or the odor may give me a headache.  If it gets on my skin, I will have to wash it off.  My senses are heightened, and sounds, smells, or light that you don’t notice can be unpleasant or painful to me.  Also, my blood pressure is higher on a migraine day.

Some people, like me, also experience migraine “with aura,” meaning that because you have migraines, you have other weird stuff happening too.  Sometimes the other weird stuff happens before a migraine headache, like a warning, and sometimes the weird stuff happens, but you don’t get a headache.  Some examples include scintillating scotomas (a visual disruption), paresthesia (a tingling or numb sensation in a part of your body), or aphasia (an inability to speak or remember words).  It is not uncommon for these symptoms to be confused with a stroke.  You may have seen this reporter having an episode on-air a few years ago:

So what this means is that, when my Botox wears off and I have to wait weeks for another dose, and a week past the injections for the Botox to take effect, I am not just experiencing a headache for which I can take pain relievers, tough it out, and go on with my day.

No, what I have is cognitive impairment (brain fog) so severe that I cannot accomplish basic functions like taking my medications.  I may forget if the dog is inside or outside.  I may forget I have a dog.  I won’t have an appetite, and may vomit, but if I do try to prepare food, I may forget to turn off the stove afterward, or I may forget the food is on the stove cooking.  If I try to speak, I may not be able to remember words or form sentences.  I may have intermittent balance problems, or I may have vertigo so severe that I cannot lie down (everything spins harder), and can only go down stairs on my butt, like a toddler.  NO WAY could I operate a car like this.  Every light in the house will be off.  Every curtain or blind will be closed.  And until it passes, I will be unable to do anything.

So, even though the Botox treatments give me 8-9 weeks of much-lessened symptoms (there are still bad or unproductive days), feeling the Botox wear off and knowing that I will descend back into that pit for 3-4 weeks is a horrible, frustrating, helpless, and unnecessary feeling that I wouldn’t wish on anyone.

To give someone relief and then take it away due to bureaucratic or monetary restrictions is cruel and inhumane.

The nurse practitioner who gives me the injections every quarter tells me he understands that the Botox doesn’t last as long for some patients, but he cannot shorten the interval unless VA policy changes.

Here are the VA guidelines I can find:

http://www.va.gov/purchasedcare/docs/pubfiles/policymanuals/champva/chapter2/1c2s22-5.htm

I have not been able to find the VA publication that includes the specific approved interval for Botox shots and the underlying justification.

Meanwhile, having just experienced the end of my Botox cycle again, I decided to highlight on my calendar the weeks that I will be unable to function at the end of this Botox cycle.  That way, I will know not to plan anything for those 3-4 weeks.

It’s a really weird feeling to plan for being incapacitated.  And it’s almost impossible to explain to others that I will not be capable of doing anything during those weeks – that I know about it in advance, and there’s nothing I can do about it.

You’re not supposed to be able to schedule being sick.  It’s something that normally happens unexpectedly.  And, in our culture, when that happens you heavily medicate yourself and try to go on with your normal schedule anyway.

Since most people don’t understand chronic illness, there’s no way they’re going to understand episodic chronic illness.

But since the VA (and many other healthcare providers) will only approve a twelve-week interval for migraine treatment Botox injections, I will have to schedule around the weeks I know I will be incapacitated.

This cycle, that includes Easter.  I will be doing nothing for Easter this year – just hiding in a dark, quiet house and praying for my next shots like a heroin addict.