Month: April 2019

I plan to talk about this a lot more here, but being chronically ill and disabled led to me taking drastic action in an attempt to have better quality of life. So far, it has been hella frustrating and difficult.

Although we have tried various times over the years to downsize (Spousal Unit and I never seemed to be on the same page at the same time with this), we still wound up moving entirely too much superfluous stuff to Florida. Given that a) this house is much, much smaller than our house in the Rockies; and b) this house also needs significant renovation, the result has been that we have mounds of stuff that has nowhere to go and those mounds keep getting shifted from place to place as we need access to the spots where the mounds have accumulated.

To me, right now, our entire life feels like the chaos section of this bookstore:

I am sure it will get better – eventually. Right now, however, I am wishing that we had been able to get rid of much more *before* we packed and moved thousands of miles.

The interesting thing, psychologically speaking, has been the shift in our attitudes once we moved to a radically smaller house and transitioned to a climate where things mold, rot, rust, and otherwise decay so much more quickly. Sentimental attachments have all but disappeared. The “but we might need this someday” fear has been overcome by the realization that, in this climate, by the time we’d “someday” need it, it’d probably be decayed beyond usefulness anyway.

We are now confronted with the stark reality that a) we have too much useless stuff; b) no one is likely to want our stuff once we’re gone; and c) if we have to stub our toes on it all the time, we don’t want it either!

My final hurdle is that I am allergic to mold and dust, which makes it very difficult for me to go through all the old papers, pictures, and books and decide which things I want to keep. And yet, I’m afraid to just chuck it all, because some of these things do still have value for me (sentimental and otherwise).

However, many things which have been hauled unquestioned literally across the globe (across oceans and back) are now being jettisoned.

Because my quality of life depends on a healthy environment and removal of stress, and because I am no longer capable of physically maintaining so many possessions, I am letting go of things (like my books) which I clung to for so long. Spousal Unit and I joke that it’s the same kind of survival minimalism that the pioneers experienced when crossing the Great Plains – “There goes the piano!” “The oxen can’t carry the load any more – say goodbye to the heirloom grandfather clock!” Hard choices are being made. But, under the circumstances, they don’t seem as difficult as they used to. The ultimate choice is survival.

For many of us, daily medication makes our lives more tolerable – or simply possible. And yet, it is so tempting when they are working and you are feeling pretty good to wonder if the meds are working or whether you even need them anymore. This is probably one of the most frustrating things for healthcare providers – to have a patient who is being helped by their meds suddenly stop taking them.

In case you are wondering, I have never willingly done that. But, as you know, I am currently without Botox due to the complications which have arisen from transitioning my healthcare to Florida. It is now looking like I will probably receive my next Botox injections one quarter late. In other words, instead of receiving my injections at the recommended 12-week interval, I will likely receive my next injections 24 weeks after my previous ones, thus missing one entire quarter. Since Botox can take a while to build up in one’s system, and I will have missed a maintaining dose, I don’t know how long it will take for it to return to the levels/effects I was experiencing previously.

As Spousal Unit has pointed out, there *has* been one benefit of this forced discontinuation of my medication – it has demonstrated that Botox was, in fact, reducing my migraine symptoms and improving my quality of life.

Botox has been clinically proven to reduce frequency of migraines for (some) people with chronic intractable migraines. I have been very, very fortunate that Botox *has* reduced the frequency of my migraines! Prior to Botox, I had tried and failed many, many other possible migraine treatment medications. NOTHING had worked to reduce the frequency or the pain of my migraines – until Botox.

But I had begun to wonder… The first year that I received Botox, I could tell when it was wearing off – my symptoms and my headaches would return two-to-three weeks before the end of the quarter.

Wow, I just re-read that post, and I had forgotten how bad it used to be! Because, at some point after the first year of treatment, this stopped happening. At some point, I stopped feeling that the Botox had worn off. I stopped being able to raise my right eyebrow like Mr. Spock – ever. I stopped having to block off “Botox-has-worn-off-so-migraine-symptoms-will-incapacitate-me” weeks on my calendar. Because Botox was controlling my symptoms full-time, with no gaps.

I never, ever missed a Botox appointment, but I did start to wonder how much it was really helping me. That’s the tricky thing about human beings – we’re not really rational actors, even when we like to pretend we are. So, despite all evidence to the contrary, I started wondering if Botox was really having much of an effect. Perhaps I was having fewer migraines because I had changed my diet? Perhaps it was due to other new medications, or the new location?

Well, now I know. Botox *was* helping – significantly. I am now approximately 4 weeks late for my Botox injections. During that four weeks, I have been experiencing symptoms such as light sensitivity, noise sensitivity, fragrance sensitivity, dizziness, lightheadedness, and severe brain fog (cognitive dysfunction). Since I receive Botox injections in my trapeziuses too, those muscles tensed up again without the Botox injections, and now several of my ribs have subluxed and my neck has become painfully misaligned. As you can imagine, this is incredibly painful. I am spending most of my day every day with a heating pad on these areas, and sleeping is quite difficult. Parathesia has also returned, with strange tingling and/or numbness (for me, often at the tip of my nose).

At four weeks past when I should have received treatment, I have not yet had a scintillating scotoma or a trigeminal migraine. While I don’t mind the scotomas, I am grateful that I have not had a blindingly painful headache…yet. I’ll keep you posted as the interval wears on until my next appointment.

So what have I learned? Botox works for me, and I give praise to the merciful Lord for that! Also, I still need Botox. The reason my symptoms had lessened or disappeared is because the medication was working. I will never question that again. [Note to self: in the future, if I forget and have similar questions, reference these blog posts on Botox.]

More than that (as important as that is), I have learned that it is very common for people to discontinue taking prescribed medications without consulting their healthcare providers. For a good overview of some of the reasons people stop taking prescribed medications, see here and here. A significant number of patients stop taking medications or decrease their doses because they can’t afford to fill the prescription as written.

If you are having difficulty affording your medication, please talk to your doctor *and* pharmacist – they may be able to help. A less-expensive generic *may* help just as well (this is *not* true for every patient). Or you may be able to obtain some free samples or qualify for a drug assistance program.

Please DO NOT stop taking your medications without talking to your healthcare provider! There could be serious consequences for your health and safety.

One Sick Vet

There was a time when I tried a medication for my migraines (at my neurologist’s suggestion) that caused me to be clinically depressed. I lost a year of my life to that drug-induced depression, meaning that I laid on the couch and did nothing for an entire year. My family was very concerned, but my neurologist kept insisting that I “just give it more time” and writing more prescriptions to counteract the (multiple) side effects. Even then, I did not discontinue taking that medication without consulting a doctor (particularly because I knew that that medication could *induce seizures* if stopped cold turkey).

On a day when I had enough mental capacity and motivation (or desperation?), I called the base healthcare line. I told them of the problems I was having, and I played the only card I had left to get someone to take my problem seriously (and I was telling the truth) – I told them that I needed professional help to discontinue taking the medication (what doctors call “titrating off,” or gradually reducing the dose) because I was suicidal. They gave me an appointment that day, and that person referred me to a psychologist. The psychologist saw me for several sessions, but believed me that the medication was causing the side effects (including the depression) and also referred me right away to a psychiatrist, who could guide me in gradually reducing my doses until I was safely off the medication. Once the medication had left my system I was no longer clinically depressed. And I did not have any seizures, because we gradually and safely reduced the doses. However, to this day I remain angry that I lost a year of my life because doctors would not listen to me and would not believe me. Thank God I did not lose my life altogether.

TL;DR: There’s a “right way” and a “wrong way” to discontinue taking medications. ALWAYS talk to a healthcare professional before discontinuing medications. Also, paradoxically, between 16% and 25% of people discontinue taking medications because they feel better, so they think they don’t need them anymore. But, as in my case, the reason they feel better, most likely, is *because* the medication is working. Keeping a medical journal (or a health blog) can be a useful way to track symptoms and treatments, and to evaluate whether the treatments are effective (and to remind yourself of their effectiveness if that’s the case). Personally, I have both a medical journal *and* a health blog. 😉

How about you? Have you ever discontinued a medication? If so, why did you stop? Did you talk to your doctor or pharmacist first?

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.