Month: March 2019

My experience with the VA [U.S. Department of Veterans Affairs] has been very mixed. I have received excellent care, negligent care, and life-threatening care – it has pretty much run the full spectrum.

Transitioning my VA healthcare from the Rockies to Florida has been very difficult.

One Sick Vet

Even though I managed to find out (in a very roundabout manner) that the VA has transition managers, and spoke to one about my move, transitioning my healthcare did not go smoothly.

My biggest problem has been getting my medications refilled. Apparently, when I saw my primary care provider in the Rockies for my annual exam, she forgot to renew my medications in the computer, which led to them “falling out” of the system. Thus, I was unable to order refills online through the VA portal. We made sure I had enough medications to last through the move to Florida, but when I attempted to get refills in Florida the trouble began.

I had arranged to see my new VA provider a few weeks after arriving at my new location. I will have a lot more to say about that particular provider later.

I explained that I had been receiving Botox from the VA in my previous location and needed to coordinate to continue to receive Botox in Florida. My new provider was unwilling to write the referral I needed, and suggested I try to receive that care from Tricare, through our military retirement benefits, rather than continuing to receive it from the VA. This would have entailed starting over from scratch to receive this treatment from a completely different healthcare system. Meanwhile, the clock was ticking, because I receive these injections on the standard 12-week interval.

My new VA provider also refused to renew any of my allergy medications, even though I had brought the bottles with me, which clearly showed they had been filled through the VA, as well as medication type, dose, etc. Because the prescriptions were no longer in the computer, he would not renew them.

I left that appointment very frustrated because I had received none of the care that I had requested – and none of it was a request for anything exotic or new, I had only sought to continue my existing course of treatment!

Meanwhile, I was also having trouble on the Tricare side of things getting other prescriptions refilled.

Thinking that perhaps I had misunderstood something due to brain fog, I returned to my local VA clinic and explained that I had completely run out of several of my medications and desperately needed refills. The receptionist relayed my request to the doctor, who responded, “I am not comfortable treating this patient’s allergies.” I was not given even an emergency refill dose to be able to continue my medications as prescribed.

What the VA provider *was* willing to do was to give me a referral to an allergist at the VA hospital. The referral was processed promptly, but the first available appointment was six weeks away (which is not a bad wait at all for a specialist, but is a long time to be without prescription medications.)

Last week I finally had my appointment with the VA allergist, and it went even better than I dared hope. Not only did the allergist agree that I should remain on my treatment plan, and agree to renew all of the prescriptions that my PCP had refused to renew, she also suggested two additional medications, both of which I am open to considering.

[It’s very rare that I am willing to try new meds, since any change runs the risk of upsetting the delicate balance that keeps my health somewhat stable. But her recommendations were really good. Even so, I only ever change one factor at a time, so that I can try to control variables and try to isolate its effect.]

So, after months of struggle, I finally have all of my medications again…until tomorrow, when I am due for my quarterly Botox injections to prevent migraines. I am still fighting that battle, trying to get the shots authorized in Florida, and unable to return to the Rockies to continue my treatment there. So I will be missing those injections, for the first time in years, as I have been unable to get that sorted out yet.

I will eventually prevail, and receive the care I need, but at what cost? Missing medication doses and undue stress are very bad for anyone, let alone someone who is chronically ill. I never realized that after fighting *for* my country, I’d have to fight *with* my country to get reasonable care for my health.

Instead of fighting for my ideals, now I’m fighting for my life.

I don’t know why there’s such a stigma against mental illnesses. All I know is that problems don’t get better by being hidden or ignored. And I believe that no one should be shamed for saying “I have a problem and I need help.”

But that’s exactly what happens in our society. And often the very people who are supposed to provide help don’t understand either. In this article, the author shares an experience when a whole session of mental health providers agreed that one symptom of mental illness was an inability to function in society. Since she, herself, has mental illness, she corrected them and asserted that some people are able to function in society despite having mental illnesses and mental health providers should shed themselves of the harmful assumption that anyone who is able to function in society cannot possibly be mentally ill.

Why am I talking about this today? Because I want to amplify the author’s voice. And because this has affected me personally.

As part of my VA disability examination process, I stated (truthfully) that I have cognitive disability. Whether it’s a symptom of chronic migraines or one of the illnesses I have subsequently been diagnosed with is difficult to determine. Regardless of its cause, it is something I struggle with.

On a bad day I type dyslexically, mixing up the order in which my fingers hit the keys and horribly misspelling anything I try to type. I forget words – I know what I want to say, but I can’t remember the word that means what I want to say. On a very bad day I throw a noun and a verb at Spousal Unit and hope Spousal Unit can figure out the sentence that should exist around them. I also have trouble holding on to a train of thought long enough to be able to get it out of my mouth.

On a very bad day I can’t read, because I can’t focus my attention and I can’t follow a train of thought. If I try to read on those days I just read the same sentence over and over again, trying to make sense of it and to remember it long enough to tie it together with the sentence that follows or precedes it. It feels like my head is full of a very thick fog, and thinking is as difficult as seeing through such a thick fog would be.

When this happens, I am aware that my capacities are greatly diminished. But there’s nothing I can do about it.

The best I can do on those days is as little as possible. I try not to leave the house and not to make any decisions, because I often create a big mess since I’m not thinking clearly. For example, I had a bad day but I was nearly out of an important medication, so I went into town (someone else was driving) to try to get my prescription refilled. I’ll save you the longer version of the story and just say that when I was done I still had no refill, and Spousal Unit had to make several phone calls to undo all the damage I’d done trying to get the refill from the wrong provider and to simply order the refill from the VA’s automated phone service.

These cognitive problems impact my life in a significant way. So imagine my surprise when the VA psychologist who evaluated me for my disability determination started with the question, “It says here you’re in a doctoral program. Is this still accurate?” I told him it was. He replied, “Then there can’t be anything cognitively wrong with you. You wouldn’t be able to accomplish the work in a doctoral program if there were anything wrong with you.” I tried to educate him as to my actual circumstances, but it was apparent that he’d made up his mind before I even arrived. As a result of his evaluation, I received no disability from the VA for cognitive dysfunction, and no assistance of any kind.

(Long-time readers will know that I have recently had to medically withdraw from my doctoral program due to cognitive dysfunction, after years of inability to accomplish my dissertation.) My university gave me no assistance either, despite me asking for accommodations at the university’s ADA office.

There’s a discussion in the chronically ill community about whether it’s more difficult to live with a seen disability or an unseen disability. It’s not a contest – it’s what academics would call a thought problem or a hypothetical situation. I think living with any disability is damn difficult. But I will also say that living with a mental disability is particularly challenging because it’s very difficult to advocate for yourself when your brain isn’t working very well.

When someone has a seen disability, they have to live with the (often thoughtless) reactions of society to their disability. When someone has an unseen illness, they can visibly “pass” as healthy, but they are frequently accused of faking their disability, and given no accommodations. Either way, they’re submitted to ableist discrimination.

One Sick Vet

In the case of mental disability, it is both an unseen disability *and* a social stigma, which makes it incredibly difficult to ask for help and to get help.

As one example of a reason someone would not ask for help, it is illegal to ask about health conditions on a job application, yet I have encountered multiple job applications that ask whether the applicant has a history of mental illness.

Yet if someone disregards the potential societal and employment ramifications of asking for help and goes to a mental health provider, they run good odds of encountering an unsympathetic provider such as the VA psychologist I encountered. Damned if you do, and damned if you don’t.

And frankly, the only reason I’m willing to be so open about my cognitive dysfunction is because I don’t think I’ll ever be able to work again, so I’m no longer concerned that it might affect my future chances of getting a job.

The system is broken, and the chronically ill and the mentally dysfunctional are some of the most at risk or least cared for. That is why I’m adding my voice to the voices of others saying that the chronically ill aren’t faking, and the mentally dysfunctional should not be shamed or ignored.

I am incredibly grateful for the few who are willing to share their experiences with chronic illness and/or mental/physical disabilities with the world and to advocate for the chronically ill/mentally ill/disabled, whether the cause of their disability is genetic or traumatic (such as TBIs). And I am honored to join their ranks.

Please remember: Just because you don’t see a disability doesn’t mean it doesn’t exist. And even if an individual seems to be functioning, even highly-functioning, in society, that doesn’t mean they are not possibly coping with one or more disabilities, even mental disabilities. You know what they say about assuming…

The most important thing that I could say is this: If someone asks for help, believe them. Help them if you’re qualified, or refer them to someone who is if you’re not.

Sometimes brains break, just like other parts of the body do, and there should be no shame in admitting that your brain is broken and that you need help.