Vacation Lessons and Wellness Wednesday

PaloDurobackyardview

I recently spent a week with my husband doing little but looking at this view of the Palo Duro Canyon from our rented patio, stargazing from the outdoor hot tub, and relaxing. We unplugged completely. No news. No work. No social media. No other people.

It was heaven, and I didn’t have a severe migraine attack the entire time we were there.

The low-level pain, nausea, and vertigo of the ongoing disease are almost always present, but that’s where they stayed. At low levels, in the background. No major attacks. No big flares. It was the most peace I’ve had in months.

When we came back, I immediately had to do what we all have to do when we get back from vacation: I had to make up for being away. My first day back at work was a “regular” Monday. I clocked 13 hours, made my family three meals (plus snacks), cleaned here and there, served as partial entertainment for a four-year-old boy, and kept my ears tuned to the TV and social media for updates on Harvey, my city, our (flooding) surrounding areas, and our friends (many of whom were evacuating.)

By 1 p.m., my pain level and other symptoms had increased with a vengeance.

While I expected this, it still got me thinking. What can I do to reclaim a little of that Palo-Duro peace for myself during the regular week? How can I take care of myself, and my health, like I did over the course of those blessed and restful days?

I recently read a post from another writer talking about reclaiming Wellness Wednesday as a day for health. She said she was going to spend each Wednesday, taking the entire day off and nurturing her body and her mind. This idea intrigues me.

I’m not sure I’m capable of making that kind of commitment right now, as I have so many other commitments already. But I’d like to try. At the very least, it will remind me that I need to prioritize myself and my health just as much as I prioritize everything else. We women, especially those of us who are moms with chronic illness, tend to need that reminder.

What about you? Do you do anything on a regular basis to prioritize your well-being and your health? What is it? 

Migraine Presents Differently For Us All

The online world is full of articles, infographics, and stories from those of us with migraine about things we wish those without migraine knew and understood about the disease. There is much less such information written to others with migraine, but I think there should be.

The disease presents so differently for each of us, and we’re all at such different stages of living life with migraine. That’s why I recently wrote a piece for Migraine.com about what I wish others with migraine knew about my disease. Read more here: https://migraine.com/living-migraine/the-differences-among-us-what-i-wish-others-with-migraine-knew/.

What about you? What do you wish others with migraine knew about how the disease presents for you? I’d love to hear what you have to say.

Affording Prescriptions When You’re Chronically Ill

Living with chronic illness is expensive. Between the monthly premiums, regular office visits, lab work, imaging tests, supplement shots, and prescriptions, it’s no wonder healthcare takes up a large part of our household budget. My daughter and I both need a lot of care. It’s one of the reasons why I take some work that enables me to have “good” healthcare coverage even though it very often makes my symptoms worse. Imagine my irritation then when even my “good” coverage isn’t enough to afford the medications we need.

One symptom of chronic migraine is severe nausea, which often grows more intense whenever the migraine cycle worsens. Recently, I have been too nauseous to swallow my nausea medication. As anyone with chronic, severe nausea knows, this is a problem.

If I can’t swallow the pill, I can’t feel better. If I can’t feel better, I can’t eat, my work productivity suffers, and I find it difficult to contribute fully at home. Even more disturbing, research indicates that persistent nausea is associated with more frequent and more severe migraine attacks.

So, like any good patient, I talked to my doctor. She changed my prescription from a 4 mg Zofran tablet to a 4 mg Zofran disintegrating tablet. This sounded great. A nausea medication I could stick under my tongue that would simply dissolve and start working. No swallowing necessary. Problem solved.

Unfortunately, once I got to the pharmacy, I realized I wasn’t going to be able to solve my problem that easily. My regular generic ondansetron tablets cost around $10 for 30 pills with my insurance. My insurance, however, doesn’t cover the dissolving version at all. Without insurance, the cost was around $650!

I laughed politely and told the pharmacist I wouldn’t be filling the prescription. Then I called my doctor and had her change my prescription back to the regular tablets, which I then filled and have been unable to take for the past few months. Problem not solved (… but more on that to follow.)

The same thing happened recently with another medication. I take an opioid for the severe pain that comes with migraine, but I don’t take it every day. In fact, for many reasons, I won’t take it more than two or three times per week. I also don’t take it on days I experience a panic attack and take a Klonopin, which means I need an alternate pain medication to have on hand (even though the opioid works best and is amazingly inexpensive).

I won’t take acetaminophen and can’t tolerate ibuprofen, so my doctor gave me some samples of Cambia, an NSAID called diclofenac. Generally, NSAIDs aren’t strong enough to treat my migraine attacks unless they come in a rapid-release form, such as an injectable. In such forms, if I take them early enough, they can even serve as an abortive, helping to keep a pending attack from turning full-blown. Since triptans don’t work for me, this is always a major bonus.

Cambia is a dissolving NSAID, and the samples worked well. The medication worked rapidly enough to help abort some attacks and was strong enough to adequately manage moderate (though not severe) pain. All in all, it worked better than many things I’d tried, and so I asked for the prescription.

Once again, I went to the pharmacy with high hopes. Once again, I left empty-handed. The drug cost $620!

I know I’m not alone. All of us living with chronic illness experience this.

Many people living with chronic migraine fervently count and hoard the number of triptans they can afford each month. It’s usually far fewer than the number of migraine days they get, and so they pick and choose which attacks to treat, hoping they pick the most severe ones. This inevitably worsens their disease prognosis, often making the disease more difficult to treat long-term. People with other conditions, like fibromyalgia, go months without their Lyrica or have to discontinue it altogether when they unexpectedly lose their health coverage – even though it may have been one of the only drugs helping to maintain quality of life.

Those of us in the United States pay far higher prices for prescription medications than people almost anywhere else. This makes many prescribed medications out of reach for the majority of us. We want them. Our doctors want us to take them. Yet still we abandon the prescriptions at the pharmacy because we simply can’t afford them. This is absurd.

Not only does prescription abandonment reduce our individual quality of life and often worsen our disease prognosis, it also impacts the economy. Without the drugs that could make our quality of life better, we work slower, we take more sick days, and our economic contributions wither. There has to be a better option.

It turns out there is: Prescription savings cards, such as ScriptSave® WellRx.

The savings card is free to get, can be used for the entire family, and isn’t insurance. The online search engine is easy to use and compares prices with the card across multiple pharmacies in each location. There’s even a mobile app!

When I compared costs, the price for Cambia with the ScriptSave WellRx card was about $100 less expensive with the card than without. Not too great, but not bad either. That’s a full week of groceries! The cost savings with the ondansetron ODT, however, were more substantial. The price went from $650 to around $25!

You can bet I’m going back to my doctor and asking her to rewrite that prescription. This time, I’ll even get it filled. Maybe, I can finally get some relief!

(Disclaimer: I was compensated in return for my honest review of the ScriptSave WellRx savings card. All thoughts and opinions expressed herein are my own, based on my personal experiences, and are not influenced by the company and/or its affiliates in any way.)

Presents for Your Loved Ones with Chronic Migraine

It’s my birthday soon, and so I’ve been thinking of presents. Of course, the things I’d really like – pain-free days, the ability to schedule events weeks in advance without fearing I’ll need to cancel, and a brain that allows me to eat cheese – no one can give me. Still, I knew there had to be something I’d want.

And there is.

After days of being too sick to eat, yet in too much pain to make the smoothies I can tolerate when nauseous, I realized a replacement blender might be in order. You know, one of those that doesn’t sound like a jackhammer or a jet plane or any other number of earsplitting objects that make me want to slam my head against the wall. And, it turns out they make these, some for not even all that much.

They also, it turns out, make vacuums that you don’t have to push. (For a price, of course, but less than you might think.) These little robots can move around your house, diligently cleaning up the ridiculous piles of German Shepherd hair that seem to get everywhere even when the dog has been bathed, brushed, and put outside. For someone like me, who is incredibly allergic to said hair and yet can’t always get out of bed or off the couch to vacuum it up and still have the energy left to make the dinner my kids will spill all over the floor, that’s big news.

So that’s what I want. A robot vacuum cleaner and a blender that doesn’t make me want to split my head open with an axe. I feel so adult. And boring.

You Know You Have Chronic Migraine When ...

Still, if you have someone in your life with chronic migraine, consider whether they, too, would like such boring but amazingly thoughtful gifts. If not, consider one of these replacements:

  • A month of healthy pre-made dinners and snacks from a service like Factor75, Splendid Spoon, or Healthy Chef;
  • A one-time maid service;
  • A one-time car detail;
  • An anti-glare screen for a computer monitor;
  • Migraine-specific glasses, like Theraspecs.

Basically, anything that makes life easier, cleaner, and/or more tolerable is a good thing. Any other ideas? Please share in the comments. I’d love to hear them!

Migraine is NOT a Headache: A Plea on the Last Day of #MHAM

Migraine is NOT a headache. Really. It’s not.

This is confusing for many of you who do not have migraine disease, I know.

I know that our awareness campaign has the word “headache” in it. I know that many of the groups that focus on migraine, including the American Headache and Migraine Association and the National Headache Foundation, have the word “headache” in their names. I know that many, many people say “My head hurts” when they are experiencing a migraine attack. I am well aware that the scientists researching migraine disease often use the word “headache” in their papers, and that the World Health Organization categories migraine disease as a “headache disorder.”

This does not make migraine disease a headache.

Migraine disease is NOT a headache. 

A severe headache is one of the most common symptoms of migraine disease. It is not the disease itself. Many people living with migraine, myself included, can and do experience migraine attacks that do not include the characteristic head pain. This does not mean we are not having a migraine attack. We are. It does not mean we are not experiencing profound disability. We likely are.

This is possible because migraine is not a headache.

Migraine is a complex neurological disease that affects every system in the body. It affects how we hear, see, smell, think, feel, speak, digest food, and sleep. It can affect our balance, our sense of touch, our mood, our ability to use our limbs, and our energy levels. It changes the way we experience pain. And, yes, it often causes us to feel pain.

But, again, it is not a headache.

Migraine is a disease. A genetic, neurological disease that has no cure and is one of the top 10 most disabling conditions in the world. Calling it a headache reduces understanding and only perpetuates the stigma so often levied against those who live with it on a daily basis.

Migraine is not a headache. So please, if you do nothing else to support those of us with migraine in the coming months, please, please stop calling it that. That’s my final #MHAM plea.

 

 

Defining #Disability

In researching the disability requirements for private insurance policies and the SSA, I realized a lot of things­—only one of which is that the actual process of applying for disability is suited more for the abled than the sick.

Applying for disability is a paper-intensive process that involves months, if not years, of work, along with the unnatural ability to convince harassed and harried doctors to spend precious moments advocating on your behalf as well as the uncanny foresight to gather all kinds of documents and “proof” along the way, well before anyone would reasonably expect they’d get sicker instead of better. Basically, it’s an arduous, uphill climb designed to discourage all but the most tenacious from ascension.

But, that isn’t what I realized on the whole.

No, the number one thing I realized while looking into disability benefits was that chronically ill people think of our lives in terms of how sick we are on any given day. How badly we feel. Levels of pain, degrees of nausea, the extent of fatigue.

It’s all very subjective, that kind of thinking, and that’s why so many people fail when they try to obtain benefits. The insurance companies and the SSA don’t give a damn how we feel. They don’t care about how much pain we’re in or how nauseated we are or that we’ve never been so tired in our entire lives. They don’t give a shit.

Nor should they.

That isn’t their job.

Their job is to determine the limitations those symptoms and feelings put upon us. What can we do with that level of pain, fatigue, and nausea? What can’t we? What effects does severe vertigo or pain or any other symptom have on our ability to drive? To dress? To cook or care for our children? To work?

That’s what they care about. That’s what they are tasked with uncovering. And that’s what we need to tell them.

Chekhov once wrote something close to the popular quote, “Don’t tell me the moon is shining; show me the glint of light on broken glass.” Filing for disability is much the same.

If you’re trying to win a disability case, don’t tell them how much pain you’re in. Talk about what that level of pain keeps you from doing. Explain how the extreme pulsing in your head keeps you from talking on the phone or being in a crowded place. Explain how the severe vertigo you experience makes it where you can’t drive safely, stand upright without support, or focus on a computer screen.

Discuss your symptoms but only as a way to explain your limitations. That’s how you define your disability. That is how you win your case.

The Buffer Zones of #Migraine: The Challenges of the Prodrome and Postdrome when Chronic #MHAMSMC

When I talk about migraine disease and the effects the attacks have on me and my day-to-day life, I tend to focus on only two of the four phases of migraine: the aura and the “attack” phases. This is likely because the aura phase can be one of the most disabling stages for me, personally, and the attack phase is the most understood by those around me. The outer two stages, however, shouldn’t be disregarded, especially at times of chronic attacks.

When I’m chronic, my migraines attacks bleed into one another. Sometimes, I can’t tell if I’m in postdrome or prodrome, until after one becomes the other and I’m experiencing a new aura. But I’m working to get better at it.

There’s a part of me that believes that knowing the exact moment the postdrome switches to a new prodrome will enable me to take actions that may curtail the severity and length of the new attack. Unfortunately, so many of the symptoms of the two phases are the same, especially fatigue and cognitive dysfunction. It’s hard to tweeze them apart unless I’ve had a good day or two in between.

Right now, for instance, I am struggling to work. I woke up exhausted, stiff, and sore, and I’m having trouble concentrating. I’m irritable, and my right hand and tongue have the feeling they get in the time before the tingling and weakness actually start. My right temple and right eye also are offering a harbinger: a nice burning sensation that’s more cautionary than painful.

I’m quite obviously in prodrome, and, for me, that means I’m going to be in aura soon. My prodromes never last very long. But I really only know this because I haven’t had an attack for the past 36 hours, which means I’ve had time for the postdrome from my last attack to wind down. If this had happened yesterday, I may be thinking it was still part of the last attack.

At times like this, when I’m very chronic, and the attacks come nearly every day, I am reminded again of just how disabling the buffer zones of migraine can be. This is when I should be able to work, I think. To catch up on all the things I let fall to the side while I couldn’t see well and felt dizzy, weak, nauseous, and in pain. And yet, I still can’t function at top form.

I’m still struggling to keep up. The fatigue, brain fog, confusion, and overall slowed comprehension of the outer stages make everything take twice as long as it would otherwise (and use up twice as many spoons). I’m learning the buffer zones, while providing a nice reprieve from the pain, nausea, and sensitivities of the other stages, are nothing to be ignored.

How do you manage the prodrome and postdrome stages of your attacks? Can you easily distinguish them or do they seem to bleed together? Please let me know in the comments below.

 

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(Photo courtesy of Migraine Buddy: http://www.migrainebuddy.com/migrainesymptoms-the-stages-of-a-migraine/)