I am now three weeks past when I should have received the next set of Botox injections for my chronic, intractable migraines. The standard treatment protocol is every 12 weeks, but I have been unable to get the VA to continue my treatment since I moved.
Last Friday I was feeling particularly unwell. The brain fog was severe, and along with that came apathy and despair. I knew that something had to be done. With the help of Spousal Unit (I was in no condition to drive safely), I went to the local VA clinic and staged a sort of sit-in. I told the receptionist that I needed Botox and I wasn’t leaving the clinic without a referral to the VA hospital for Botox. (Botox shots are not administered at my clinic, so I must travel to the nearest VA hospital.)
The receptionist told me to have a seat, and warned me I could be there all afternoon. I said I didn’t care if it took all day, I wasn’t leaving until I got what I needed, and I went and had a seat.
Of course my light sensitivity has returned, so I sat in the darkest part of the waiting room with my hat and dark sunglasses on, away from all the other patients and the magazines (sound sensitivity, fragrance sensitivity).
After a while, Spousal Unit got a little impatient with waiting and suggested we also try to follow up with the Veterans Experience Office.
We had been at the nearest VA hospital a few weeks ago and had attempted to resolve the Botox situation then, and we were referred to the Veterans Experience Office (which is kind-of like a patient advocate program). Unfortunately, the representative had asked me to go home and send her an email detailing my experience with the provider who had refused to give me the referral I needed in order to continue receiving Botox injections after I moved.
I say this is unfortunate because one of my worst symptoms (which also led to my having to withdraw from graduate school) is brain fog, aka cognitive dysfunction. My brain fog has increased since the lapse in my Botox treatment, and I have been unable to think clearly enough to write a thorough and coherent email regarding the situation. Also, the brain fog led to me misplacing the scrap of paper with the Veterans Experience Office email on it that the rep had given me.
Apparently no case file had been started either, despite my visit to their office. However, the rep that Spousal Unit reached via phone while I was staging my sit-in was very helpful. She started a case file and took the details down over the phone. She told me that someone would respond within a week.
Meanwhile, the clinic receptionist had reached my PCP (primary care provider), who was not in the clinic that day. I was offered an appointment today, the first duty day following my request, which I accepted.
After we concluded our call with the Veterans Experience Office, I decided that I could not make any more progress on Friday, so I ended my sit-in at the VA clinic.
Today I returned for my scheduled appointment with my PCP. I do not know whether he is aware that I have filed a complaint with the Veterans Experience Office, but the receptionist at the clinic may have shared with him my statement on Friday that I was there because my PCP had refused to give me a referral to the VA hospital for Botox as I had requested for continuity of care.
Either way, my PCP entered the room saying that he had heard I was saying that he had refused to write a needed referral and he was sure he’d never done any such thing. He wasn’t confrontational – instead, he used the “gaslighting” technique. However, I remained firm, while also trying not to be confrontational, in the hopes that I might get the needed referral.
He went on and on about how difficult to navigate the bureaucracy would be, and that the hospital is very inconveniently far away, but I remained firm in insisting that I wanted the referral. Eventually he acquiesced and submitted a referral, although he said he wasn’t sure if he was referring me to the correct department of the hospital, and that he didn’t know if the referral would be effective.
However, everyone with whom I had previously spoken at the VA hospital had said that they couldn’t help me without a referral from my PCP, so at least I have finally cleared that hurdle.
I do not know how much longer I will have to wait before I can get approval from the local VA hospital to simply continue the care plan I was already following with the VA at my previous location, i.e., receiving the Botox injections. It seems to me that such a transfer of in-system care should not be nearly this difficult.
Meanwhile, my health will continue to deteriorate until I receive the next set of injections, and it may take more than one set of injections (which are only given at 12 week intervals) before I regain the level of health I had prior to the interruption in my medications. Like many other medications, full effects are only felt once a certain level of medication has built up in the patient’s system, and I don’t know how long it may take to reach the level of medication that had built up in my system prior to the interruption.
I am frustrated and angry that this has taken place despite my best efforts to receive continuity of care and prevent any disruption of treatment.
“Patients should not have to wage war to receive sufficient healthcare.”
One Sick Vet
I say wage war because it is never simply one battle. The chronically ill and disabled find themselves fighting skirmish after skirmish, battle after battle, merely to stay alive. To get the medications or treatments they need prescribed, authorized, approved, and paid for. To be able to continue the medications that have been working for them. To get the diagnostic test(s) that will pinpoint their illness or injury and lead to the right course of treatment.
But you don’t have to take my word for it – ask any one you know who is chronically ill and/or disabled. Read blogs or tweets written by others in these communities, such as The Bloggess’ recurring battles with her HMO to simply continue her medications – especially the ones that allow her to function, earn a living, and stay mobile.
And then consider that these are the struggles of people who actually *have* healthcare. There are others in even worse situations, who need care but have no way to access or pay for it.
And those of us who have illnesses or disabilities that affect our cognitive abilities or who have conditions that include overwhelming fatigue* or depression have to advocate for ourselves and fight for care despite being disadvantaged by our conditions. Because if we don’t, who will?
*Unfamiliar with chronic fatigue? Chronically ill blogger Lindsay describes it like this: “And suddenly, I’m back to needing multiple naps per day and lying down as soon as I get home from work. I am always exhausted. If you’re not familiar with the difference between being tired and being fatigued, I describe it like this: tired means I would fall asleep if I went into the bedroom to lie down; fatigue means I’m not sure I can walk to the bedroom without falling down.“
I say again: Patients should not have to wage war to receive sufficient healthcare. There should be room for more in someone’s life than just their fight for survival. We all deserve better.
