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.

 

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.

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

http://www.foxnews.com/politics/2016/09/29/new-low-dead-veterans-left-in-va-hospital-morgue-for-weeks-without-burial.html

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

https://www.ncbi.nlm.nih.gov/pubmed/27654602?dopt=Abstract

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

http://www.moaa.org/NewTRICARE/

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

http://www.moaa.org/Content/Take-Action/Top-Issues/Retirees/Diet-COLA-May-Cause-Headache.aspx

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.

What It’s Like to Have an Allergic Reaction Pre-Surgery

It’s been pretty quiet on this blog lately.

Have you heard the saying that flying consists of hours and hours of boredom interrupted by moments of sheer terror?

Well, let me tell you about the time I was waiting for anesthesia prior to surgery, but I developed an allergic reaction and the surgery was cancelled…

[Image of allergic contact dermatitis from Google Images]

So far I’ve had two surgeries, both of which were Tricare referrals to civilian facilities.  This was to be my first surgery at a VA hospital.

The contrast between civilian and VA facilities and experiences was interesting, but I’ll save that for another post.

I will say, though, that the military “hurry up and wait” dynamic is alive and well at this VA facility.  That may have saved my life.

Every stage of the process at the VA hospital felt slow and inefficient.  There was a whole lot of waiting.  And communications could have been better as far as what would happen during each stage of the process.

One thing that was well communicated, however, was the pre-surgery cleansing process.

I was given a nifty hospital gown and robe, a pair of no-slip hospital socks, and some antiseptic body wipes, and was escorted to the bathroom.  Once there, I was directed to follow the cleansing protocol on the wall chart using the antiseptic wipes and I was left to accomplish the task.

There were three packages, each of which contained two wipes.  The wall chart showed a body with six defined zones and directed me to use one wipe for each zone, in a prescribed sequence.  Excluding the head and genitals, I was to start at the neck and wipe my entire body with the antiseptic wipes.  The chart spelled it all out: use the first wipe to clean the neck, shoulders, and chest; use the second wipe to clean the arms and hands; etc.  When I had completed wiping down my body with the antiseptic wipes, I let it air dry as directed.  (The antiseptic was supposed to remain on my body, rather than being rinsed off.)

After having completed the pre-surgery cleansing protocol as directed on the wall chart and donning my nifty gown, robe, and socks, I returned to my hospital bed and waited.  And waited.  I could feel the residue from the wipes on my body – it felt tacky.  I remember commenting that I hadn’t had to do this cleaning procedure for either of my previous surgeries.  We assumed the VA was being ultra-cautious about infections.

Eventually I was taken back to some kind of a surgical staging area.  The nurse anesthetist put in an IV line, and I had pre-surgery conversations with a nurse, the nurse anesthetist, the anesthesiologist, and my surgeon. Again there was more waiting around than I had experienced prior to previous surgeries.

The nurse anesthetist returned and said it was time to remove my robe.  As she assisted me in getting the robe off of my shoulders (while I was propped up in the hospital bed), she exclaimed, “Your back is really red and splotchy!”  This got the attention of the nearest nurse, who came over, looked at my back, and agreed it didn’t look normal.

They asked me questions:  “Do you have a history of eczema?” [No]. “Do you have a history of hives?” [I don’t think so].  “Is it spreading?”  I could feel that my face and neck were getting more and more flushed.  I could tell when the hives spread up my neck, although I couldn’t see them.

They started looking at the rest of my body, asking questions while they looked under my gown and folded back my blanket:  “Is it on your chest?” [Yes].  “Is it on your abdomen?” [Yes].  “Is it on your arms?” [A bit].  “Is it on your legs?” [Not yet].

Once they determined that I was probably having an allergic reaction, they started asking lots of questions: “Does it itch?” [No]. “Does your tongue feel swollen?” [No].  “Stick out your tongue and let me look at it.”  “Are you having any trouble breathing?” [No].  Other medical staff came and went, looking at the situation and asking questions.

At some point the nurse anesthetist went and got Benadryl (an antihistamine) and started administering it through my IV.  Then they started trying to determine the cause of my allergic reaction.

It was pretty clear to me that it must be the antiseptic wipes.  But the pre-surgery cleansing protocol had apparently been instituted fairly recently, and not many people in the pre-surgery staging area seemed to know about it.  I explained it to person after person.

Finally one or two people who were aware of the new cleansing protocol got involved.  A consensus was reached that I was having an allergic reaction, as evidenced by allergic contact dermatitis and hives (urticaria), and that it was caused by the antiseptic wipes.

A decision was made to delay my surgery while they monitored my condition.  The nurse anesthetist was prepared to administer steroids if necessary.  The patient who was scheduled after me was moved up to my surgical time slot.  I started to feel light-headed and buzzed from the Benadryl.  A nurse told me that my blood pressure was “slightly high.”  When I asked her “How slightly?”, she responded “185/99.”

I was informed that the hospital was tracking adverse patient reactions to the new protocol.  Someone sent for the Chief Surgeon, who came and looked at me, asked me a few questions, proclaimed that I was manifesting a classic dermatologic allergic reaction, and told me he was sorry I was having this negative reaction and that it would be logged.

I was also informed that this allergy would be added immediately to my VA medical records.  The substance to which I reacted is Chlorhexidine.  In the wipes, it was a 2% Chlorhexidine Gluconate solution.  I was told that Chlorhexidine reactions were rare, but could be severe.

The anesthesiologist suggested that I have a shower to wash off the antiseptic.  No one responded to his suggestion, although a nurse went and got a wet wash cloth and proceeded to wipe down my back and part of my neck.

The rash/dermatitis/hives seemed to stop spreading in response to the Benadryl.  My blood pressure also started coming down.  My surgeon, who had been monitoring my situation, returned and informed me that he had decided to cancel my surgery and re-schedule it for another day.

Initially I was disappointed by this decision, since I wanted to get the condition I needed surgery for dealt with, and because I would have to go through the surgical preparation logistics all over again.

But after I got home and started feeling better, I researched Chlorhexidine reactions and found multiple medical journal articles describing patients with Chlorhexidine reactions having anaphylactic reactions* under anesthesia, either in pre-op or during surgery.  Then I was very grateful for my surgeon’s caution.

(And for the inefficiency of the hospital staff.  Had my surgery started on time, I might have been under anesthesia when my allergic reaction manifested.)

Additionally, I was warned that my symptoms could return (presumably after the Benadryl wore off).  It would not have been good for my symptoms to get worse or to return while I was under anesthesia.

After monitoring, and the return of my blood pressure to an acceptable level, I was permitted to go home, with the caution to continue to monitor my symptoms and to get help if the symptoms returned/got worse and I started to have trouble breathing.

[I insisted on a shower before leaving the hospital, to remove the offending substance from my skin, however no shower was available, so I was given wash cloths and towels, and escorted to a bathroom to clean up in the sink.  I washed myself as best as I could, and took a complete shower after I got home.]

I did have symptoms again at home the next day, which I treated with an OTC antihistamine and an NSAID.  Had my symptoms gotten worse, I would have called 911 or driven to the emergency room.

I am still waiting to re-schedule the surgery…

BOTTOM LINE: The VA has a new (as of April 2016) pre-surgery cleansing procedure which consists of using 2% Chlorhexidine Gluconate body wipes.  Some people, like me, are allergic to Chlorhexidine.  Chlorhexidine is also used in hospitals in catheters, antimicrobial skin dressings, and antimicrobial surgical mesh, among other things.  It is also used sometimes to sterilize medical equipment.  If you are allergic to Chlorhexidine, be VERY, VERY cautious in a medical setting and make sure all of your healthcare providers know.

Chlorhexidine is also used in dentistry, in certain mouthwashes and rinses and in certain dental procedures, so be cautious there as well.

WARNING:  If you are allergic to Chlorhexidine, you should be aware that it is an ingredient in many products besides pre-surgery antiseptics.  Please see this website for other products (including everyday household products) which may contain Chlorhexidine.

NOTE: Prior to this incident, I was aware that my skin was sensitive to some laundry detergents (they make my skin itch) but I had never had an allergic reaction, nor had I been diagnosed with any allergies.  I had no idea I would have an allergic reaction to the antiseptic wipes.

*NOTE: An anaphylactic reaction/response is a severe allergic reaction.  The most dangerous anaphylactic reaction is one in which the airway is compromised due to swelling of the mouth, tongue, throat, and/or lungs.  For more information on anaphylaxis, see this Mayo Clinic website.

Tired to the Bone

Tired Dog

I try to be optimistic and proactive about my health.  But some days I’m just tired to the bone.

Last week I had three medical procedures.  One was a new treatment, and two were diagnostic.  It may take days, weeks, or months before we know if the new treatment is having an effect.  So I wait…

Meanwhile,

The diagnostic procedures revealed that I have been correct for the past 2+ years that there is something wrong with my wrist.

More than two years ago I fell violently on a wet ceramic tile floor.  Ever since, I have been telling doctors and therapists that I have pain and malfunction in four areas: my scapula, my shoulder, my elbow, and my wrist.

Although my doctor ordered x-rays immediately after the fall, once those came back negative for broken bones she refused to send me for additional imaging (MRI/arthrogram).  Nearly one year later, after I had “failed to progress” in physical therapy, my doctor finally sent me for a shoulder MRI/arthrogram, which revealed that my labrum was severely torn and would not heal without surgery.

By that point, nearly one full year after the injury, I was in severe pain and could barely do my job.  Some days I left work early due to the pain, and I wasn’t getting much sleep either.  I could sleep in one position on the couch, surrounded by pillows that held my shoulder in the least-painful position, but if I shifted in my sleep the pain would wake me up.

I was taking a strong NSAID and a narcotic, but that wasn’t enough to control the pain.  I was getting pretty desperate for relief.  For months I requested that my doctor refer me for pain management, but she refused.

Fortunately, once I received the diagnosis of the torn labrum (a.k.a. SLAP tear/SLAP lesion) things happened a little more quickly.

The story of how I selected my orthopedic shoulder surgeon is a saga for another post.  But once I had authorization to receive care from him, I was able to see him a few days later (one month after the MRI).

At this point, I was desperate for relief, and I didn’t care if it cost me my job.  I told the nurse I would take the first available surgery slot, and asked her to look for cancellations.  She found a cancellation for the following week, which gave me just enough time to stop taking all medications, vitamins, and supplements and get them out of my system so they didn’t interfere with the surgery or the recovery.

I told my boss that I was having surgery the next week, and would probably be out for at least 6 weeks since I couldn’t drive with my arm in a sling.  Although I was an hourly worker, and would not get paid while I wasn’t working, they didn’t fire me.  They told me to get the help I needed and come back when I was better.

I had the surgery, and it was successful.  The surgeon discovered that my labrum was completely severed, and he had to trim it, re-attach it, and anchor it to the bone.  However, the biceps tendon was not torn, and the rotator cuff was not damaged either.

Even immediately post-surgery, the pain level was so much lower than before the surgery.  I was able to stop taking narcotics after about two days.

I started physical therapy seven weeks after surgery.  My surgeon wanted to give the labrum plenty of time to reattach to the bone and form a strong connection.

We noticed in physical therapy that I was still having pain and malfunction in the scapula, elbow, and wrist.  My doctor and physical therapist wanted to give it some time, to see whether this would shake out as physical therapy re-trained the muscles to function as they had before the fall.

My surgeon said that if the pain and swelling in my hand and wrist had not gone down in three months, I should probably see an orthopedic wrist surgeon, as I might have a tear in my triangular fibrocartilage complex (TFCC).

Then a whole lot of life happened.  Moved twice.  Different states. New PCM.  New PCM refused to refer me for MRI/arthrogram of wrist, which was still discolored, swollen, weak, and painful, but did refer me to a new physical therapist.  Physical therapist wanted to try treatment first, but after I “failed to progress” with elbow and wrist function, PT agreed it was time to get diagnostics and see an orthopedic specialist.

Meanwhile, I had finally gotten my VA disability claim processed, and after a seven month wait for an appointment had finally seen a VA PCM.  Since I had not been able to get my Tricare PCM to follow-up on the wrist, I asked my VA PCM to treat it.  She sent me for x-rays immediately following our appointment.  The x-rays showed my ulna was mis-aligned.

Less than two weeks after I saw my VA PCM for the first time, I had EMG and CNS procedures to determine if there was permanent nerve damage in my left arm/hand, and to determine whether the problem was due to a pinched nerve in my neck.

A few days later, I had an appointment at the VA hand clinic.  The x-rays had indicated a problem in my wrist, and the examination at the hand clinic confirmed it, so the hand clinic referred me for a wrist MRI/arthrogram.  FINALLY!

Three weeks later I had the MRI and arthrogram (post pending).  It was more than two years since I had been injured, and more than a year since the shoulder surgery.

The arthrogram revealed not only that I have a TFCC tear, but also that I have a scapholunate (S-L) teartwo torn ligaments in my wrist.

Initially, I was happy to finally have diagnostic evidence to support the injury claims I have been making for the last two-plus years.  And I was excited by the possibility that I could get the ligaments repaired and finally begin to heal.

But today I am just tired to the bone.  I have to find a new orthopedic surgeon in the state where I now live.  Someone I can trust to work on my wrist – a very delicate and complex part of the human body.  Someone in either the Tricare or the VA system.  And I have to get authorization 1) to consult with them and 2) to have surgery, if necessary.

Plus, I still don’t know whether I have a torn ligament or ligaments in my elbow.  My physical therapist thinks that I do.  But I haven’t been able to get Tricare or the VA to send me for diagnostics of my elbow yet.

On a better day, I will conduct more research on orthopedic wrist surgeons, and I will fight to get the referrals and the treatment that I need.  On a better day, I will take positive action to resolve this injury.

But today I am tired.  Today I will rest and regroup, so that I can resume battle recharged and equipped with knowledge.

Bottom Line:  It’s ok to be tired.  We all need rest.  We all need self-care.  Resting does not mean we are weak.

Lessons Learned:

  1. Keep fighting until you get the care you need.  There will be good days and there will be bad days, but you deserve to be heard and to be treated.
  2. You don’t have to go it alone.  Get a Patient Advocate, Case Manager, or lawyer to assist you.
  3. “If you haven’t got your health, you haven’t got anything.”  I delayed my first round of physical therapy because I was busy with work and school.  If I had “failed” PT sooner, I probably would have gotten my shoulder MRI sooner and my shoulder surgery sooner.  I wish I had made my health more of a priority sooner.  Problems don’t go away when you ignore them.
  4. Learn the administrative procedures.  HMOs typically have set procedures for dealing with illness, injury, etc.  PCMs have to follow the sequence when treating patients.  Even though I knew I needed shoulder surgery, I had to “fail” PT first.  It will do you no good to try to pre-empt procedures – you won’t get authorization to do things out of sequence.  So find out the sequence and get it done so you can get to the end-state you need.
  5. Trust your gut.  Various healthcare providers gave me various ideas on what might be causing my symptoms – only one of them was (partially) correct.  I knew from the beginning that something was wrong with my wrist and that I needed imaging to find out what it was.  You know your body better than anyone else.  If you know something is wrong, keep demanding treatment until it’s fixed to your satisfaction.
  6. Watch out for wet freaking ceramic tile floors!  Or any other slip, trip, or fall hazard – you don’t want to jack yourself up like I did.

How NOT to Do It: Applying for VA Disability Years After Military Separation

Something slightly different today: I had the opportunity to write a guest post for The Military Guide.  Started by a Navy veteran who transitioned to an early retirement lifestyle after 20 years of military service, The Military Guide covers subjects such as financial independence and early retirement from a military perspective.  If you’re interested in ways to parlay military pay and benefits into savings, investments, and possibly a side hustle or two so that you, too, can avoid working or can work on your own terms after you separate from the military, head on over there and check it out.  Doug Nordman, the founder of The Military Guide, retired in his early forties and now surfs and supports veterans causes.  With some hard work and careful planning, that could be you!

The post I wrote for The Military Guide covers my experience of filing for VA disability well *after* I separated from the military.  Hopefully it will be a cautionary tale of what NOT to do, if you are still on active duty. Or, perhaps, it will give you the motivation to go ahead and apply for VA disability benefits, even if it’s been *years* since you separated from the military.  Check it out and let me know what you think.

Guest Post: Applying for VA Disability at Military Retirement

Today we have a guest post about one veteran’s experience applying for VA disability in conjunction with retirement from the military:

“I recently retired from the military. I was fortunate to have some people knowledgeable in VA procedures to help me find my way through the little known avenues of applying for VA benefits. For starters, I was in a career field that discouraged complaining to the military doctors about physical ailments. That does a great disservice to the military member when it comes time to separate. If the ailment is not in your records, then it is difficult to prove to the VA that it was service connected. Fortunately, again, my last assignment was not as operational and I used that time to get to the doctor and get all of my problems written into my medical records. That did require many trips to the base/post hospital, but those trips were worth the effort, even if they did not resolve the issue. As I got close to my retirement date, I began the process of getting into the VA system.

The second thing I did was to attend the Transition Assistance seminar offered by the military. While not everything in this seminar may be relevant to you, the visit from the VSO (Veteran’s Service Organization) representative (if he or she is any good) WILL be worth your time. If you cannot attend the TA seminar, please contact a VSO representative BEFORE separating from the military. They are often found at VA hospitals and military hospitals, or a list can be found on the VA website. They will help you fill out the proper forms and get started. Applying before you separate makes things easier.

Well in advance of retiring, I went to medical records at my installation and had them make two copies of my complete medical record: one for me and one for the VA. This can often take a few months. I suggest you never give up your copy of your medical records. I went over my complete record and made a list of everything I ever saw a medical professional about while on active duty. The VSO representative will want a copy of your medical records to review as well, so be sure to give them a copy. My VSO found things to apply for that I would have completely ignored. I was surprised at what I got disability for and what I did not get disability for. I also highly recommend reviewing the e-CFR, Title 38, Chapter 1, Part 4 available on-line to see what the VA can give you disability for. I did this around the time that I applied for my appeal to the VA’s initial decision and wish I had reviewed them sooner. They are available here.

Even if the VA only gives you a zero compensable disability for something, it is in your records as service connected and can be upgraded later if the problem gets worse. The important thing is having proof that you had the condition while you were on active duty. If you have it in your VA medical records from your separation exam, then it is, as I understand it, by definition, service connected.

Eventually, the VA set up an appointment to review my case with a VA Physician’s Assistant (PA) but you may see a doctor there. This is where they assessed the degree of my physical ailments. This doctor or PA will not assign any disability. They fill out paperwork and send it off to others who will decide your VA fate. The doctor/PA will probably be very friendly (as mine was) and you can be friendly as well, but remember, they are there to assess you and you are there to convince them that you actually are impaired. (I am, of course, assuming that you are impaired and not trying to game the system. Please do not try to apply for things that are not actually wrong with you. Fraud is dealt with harshly by Uncle Sam.)

A few months later I got the results from my appointment with all the data on my 70% disability and information on disability pay. As I mentioned, I did appeal the decision on basically everything that the VA turned me down for that I knew gave me trouble. After going through the same process a second time, I was finally awarded a 100% disability. They had neglected to assess one of my biggest disabilities, plus I was awarded a few smaller percentage disabilities that had been zeros previously. Overall, because I started early and was knowledgeable on the process, the entire ordeal, although long (7 months for initial rating plus another 7 months for the appeal), was not as difficult as I had been expecting.

If you are eligible to be seen at the VA, I recommend going at least annually to get a check-up just to keep your file current even if you get your primary care somewhere else. I do this and feel a bit out of place due to my age. If you are newly retired or separated, you may feel a bit out of place at the VA as well, but don’t let that scare you into avoiding it.

Finally, there are lawyers out there listed on the VA website who specialize in dealing with the VA. I thought that seeing one early in the process would help. It did not. Remember, they work for a fee, while the VSO representative works for the organization they represent, and there is no charge to you. I am not disparaging the lawyers, but as the lawyer I saw told me, there was nothing he could do until the VA had rejected my claim. If you feel the VA is not giving you the disability you deserve and the VSO representative is at the end of his ability, then by all means consider one of those lawyers, but do not waste money on a consultation before you need it.” – Die Fledermaus

Thanks, Die Fledermaus, for sharing your experience with us.

***I (Crew Dog) STRONGLY recommend that you consult with a VSO BEFORE filing your initial claim – they have the experience to make the claim stronger and the process smoother.***  For example:

Filing a VA claim – AMVETS

Filing a VA claim – VFW

VSOs for benefits claims assistance, career guidance, and more

Advice from a lawyer: 8 ways to improve your disability claim

Here are some additional resources that may help you if you are applying for VA disability compensation benefits:

What is all this, anyway? A thorough explanation provided by MOAA

Understanding the VA disability application process

Getting started (pre-discharge from service)

Applying for benefits (all benefits)

Compensation

VA service-connected disability compensation rates

38 CFR Book C, Schedule for Rating Disabilities

Legal presumption of disability

Another Vet’s experience: Lessons I learned filing for disability benefits

How do veterans file a PTSD claim?

The VA denied my disability claim. Now what?