Favorite Books for Folks with Migraine - Chronic Christmas

ChronicChristmasI must confess that I'm a bibliophile who voraciously reads books on many subjects including Migraine disease and other health issues. There are many reasons I love books. I read to learn, for inspiration, to relax and escape a bit, and more.

Recently, I read Chronic Christmas, written by Lene Andersen, a friend and colleague. I admit that I'd read anything Lene writes, BUT I wouldn't be telling you about this book if I didn't truly believe it to be a good one for your library. I can't describe it any better than the description that's on Amazon.com, so here's their description:

"Chronic Christmas is an Advent calendar full of self-care tips to help people with chronic illness savor the holiday season as never before. Author Lene Andersen has lived with rheumatoid arthritis for most of her life and is a health advocate and writer. Using her distinctive conversational style infused with warmth and humor, she has crafted a unique guide to an enjoyable Christmas season. Each Advent entry will enable the person with a chronic illness and their friends and family to connect in ways both effortless and fun. Chronic Christmas is guaranteed to help you relax and save your time and energy for what is truly important. The book also includes a few surprises along the way!"

One of my criteria for a great nonfiction book is that author does their research and truly knows their topic. Lene definitely knows her topic. She has lived with rheumatoid arthritis since she was four-years-old. RA hasn't stopped Lene. She's a very talented woman and an excellent and compassionate writer. To learn more about Lene, check out her story in Living with Rheumatoid Arthritis.

One of the best features of Chronic Christmas is that each day's entry also contains tips for helping someone with a chronic illness. That makes it not only a superlative book for those of us living with a chronic condition, but also for anyone who cares about us.

Chronic Christmas is available in both paperback and Kindle formats on Amazon. That's another great feature of the book — The Kindle format is so flexible that it can easily be gifted to anyone who likes to read books in electronic format because you do NOT need a Kindle to read it. With Amazon's free Kindle app it can be read on computers, laptops, and mobile devices of all kinds.

Review_stars_5Whether you're shopping for a gift, or looking for a book for yourself, Chronic Christmas is a perfect choice. Whether you're living with Migraine, RA, or another chronic condition, it fits your life. It's one of the best books I've read in quite some time, and I give it a full five stars!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine - Holiday Self-Care

WinterSundayHappy Sunday to my extended Migraine and Headache family! It's an unpleasant fact of life that some of us are bound to be dealing with Migraine attacks or headaches today, but I hope the day and your heads are being as kind to you as possible today.

Whatever holidays you may celebrate, you're probably deep into holiday decorating, shopping, baking, and other preparations. That's all well and good, but are we taking care of ourselves?

Consider this quote:

"Self-compassion is simply giving the same kindness to ourselves that we would give to others. "
             ~ Christopher Germer

And this one:

"... that’s the time of year when everybody stresses. Needlessly, I might add, because it’s really not the point of the holiday. You know, if you don’t have the perfect present or if the turkey’s a little overcooked... Your family wants you, and what good are you with a Migraine?"
             ~ Marcia Cross

We all wear many hats, play many roles. We're parents, grandparents, spouses, sisters, brothers, caregivers for our families, and more. As I look at that little list of roles, I realize that I left out a key role - that of being our own caretakers. What would you say is important about that role? Unless we pay attention to being our own caretakers, we're not going to be able to fulfill the other roles very well, and that can carry an enormous cost.

What do you remember most from the holidays when you were growing up? What I remember most is all the holidays when the entire family paid the price for my mother's insistence that everything be "perfect" despite her not feeling well enough to do things herself. These aren't the type of memories that I want to create for my loved ones, and I'm sure you feel the same way.

The bottom line is that if we're not practicing good self-care, it's far less likely that we can be part of creating the kind of holiday experiences and memories we want for the people we care about. It took me a while to recognize this. It was difficult, but one of the most important lessons I learned was to just let some things go. Things don't have to be perfect. Holidays should be about people, not things.

Here are some links to material that may be helpful to you leading up to and during the holidays:

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Doctors and Migratude

Fall-SundayHappy Sunday to my Migraine and Headache family! Many of us have had problems due to the weather over the last week. Hopefully, today will be better, and you'll have as pleasant a day as possible.

Over the past week, I've had a couple of conversations about what has been the most helpful element of my ongoing Migraine management efforts. This is a very common topic since all of us want to make progress in this area.

My answer to this question has always tended to be that the most important element of Migraine management is a good, knowledgeable doctor who will work with me as a treatment partner. A doctor who will outline all of the options, then make decisions WITH me, not FOR me. My Migraine specialist, Dr. David Watson, loves working this way. If you'd like to see more about how we work together, see Managing Migraine.

What's occurred to me after talking with people like Dr. Watson is that our attitude is as important as finding the right doctor to work with as a treatment partner. Dr. Watson and some other Migraine specialists I know have pointed out that the best of doctors can't manage our Migraines for us. It has to be a true partnership, and that includes our going into the partnership with an attitude that's primed for success, not failure.

LifeChallengesMigratudeWe all know that it can be easy to feel that we've "tried everything," easy to lose hope. But that presents us with multiple problems, not the least of which is that if we go to a new doctor thinking that there's nothing he or she can do to help us, or if we start a new medication thinking it's going to fail, we're sunk. That old self-fulfilling prophecy is going to rise up, bite us, and working with that new doctor or trying that new medication will fail because our minds are stronger than our bodies.

Now, let's be fair here. This applies to our doctors too. Little makes me angrier than when a fellow Migraineur tells me that their doctor said there's nothing left that they can do to help them. Seriously? Well, let me set you straight on that. It would take a very rare case indeed for there to be nothing nothing left to try. There are so many preventive options available today that to give each one of them a fair 90-day trial would take in excess of 25 years of trying a new one every 90 days with no breaks. There are fewer abortive and rescue options, but for a doctor to say there's nothing left to try is simply unacceptable.

So, what's the most helpful element of Migraine management? There are two:

  1. a good doctor who's willing to work with us as treatment partners,
  2. a good attitude on the part of both the Migraineur and the doctor.

That's where the word "Migratude" comes in.

We must combine our aptitude for learning about and coping with Migraines with a positive attitude toward Migraine management and living with Migraines to come up with a...

great Migratude!

I'll leave you with a bit of inspiration from the magnificent Patti LaBelle...

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Types of Migraine

Sunday-BouquetGood morning to my Migraine and Headache Family. I hope you're doing as well as possible today — that the weather is pleasant where you are, and that your head is being kind to you. 💕

When discussing Migraine or other headache disorders, the International Headache Society's International Classification of Headache Disorders (ICHD) is the gold standard for classifying and diagnosing headache disorders. The ICHD is now in its third edition (ICHD-3) and can be found online. There are sound, logical reasons for using standardized diagnoses:

  • It helps keep everyone "on the same page."
  • It simplifies matters if and when patients need to seek care from someone other than their regular health care providers.
  • These criteria give researchers a standardized set of criteria so that research is more uniform and valuable.
  • It's far easier for discussion purposes if everyone is using the same term to describe the various disorders.

Unfortunately, even some doctors don't use the ICHD-3 diagnoses on a regular basis. This is most likely due to how little doctors are taught about Migraine and other headache disorders during medical school. Unless a doctor is a Migraine and headache specialist or a neurologist, they may not be aware of the ICHD-3.

There are several patients who write about Migraine and headache online and/or are patient advocates for Migraine and headache patients. When we come across a discussion where a form of Migraine is being discussed, and it's not a standard ICHD-3 diagnosis, we generally give people information about the ICHD-3 and the "official" forms of Migraine. If you're part of one of those discussions, and one of us posts information for you, please don't be offended. We're just trying to offer information and support. Continuing to learn about our Migraines is one of the most valuable tools we have for working effectively as treatment partners with our doctors, and we all want to offer you the most accurate information possible.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – Grace and Equanimity

Sunday-BouquetGood Sunday morning to my Migraine and Headache family. I hope you're feeling as well as possible today and that your Migraines and Headaches are being kind to you.

One of the most most enormous challenges of living with Migraine is living with Migraine with grace and equanimity. It's certainly a challenge with which I've struggled for many years. Last week, I conversed with someone who is currently dealing with many severe challenges from her Migraines. To top things all off, a so-called "pain psychologist" was trying to tell her it was all "in her head." Seriously! The psychologist was trying to tell her that her Migraines could be stopped with therapy. Yeah, right.

Personally, in that situation, I don't know that I could handle things as well as she is. It's entirely possible that I'd tell the psychologist exactly what I thought of that theory, contact my insurance company and tell them not to pay them, and be very angry. But that's not how the dear lady I was conversing with handled it. Instead, she simply asked for some information to confirm that her reaction to the psychologist's advice - that the psychologist was wrong - was reasonable so she could continue to trust her instincts and her neurologist's advice. She told me she's been making some progress with her neurologist, and she's happy about that.

What incredible grace she showed under terrible pressure! I hope she reads this post because I want her to know how very much I admire her. As I continue thinking about it, I realize that the way she handles such challenges also makes life calmer and easier for her. Truly, I need to follow her example and not worry so much about things.

Do you know people who are able to handle life, Migraine, and other challenges in this way? I hope so. She came to me for information, but I'm the one who learned and benefited from the conversation.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine – My Migraine Made Me Do It!

HappySunday2Good morning, Migraine and Headache Family! To say that I hope you're all Migraine- and Headache-free today would be pointless because some of you are bound to be dealing with a Migraine or Headache today. Instead, let me wish each of you as good a day as possible.

How was your week? Mine went pretty well, but a Migraine on Wednesday left me thinking about how the fluctuation of neurotransmitters such as serotonin, norepinephrine, and dopamine can affect our behavior during a Migraine attack. Being cranky (that's the polite word) is often one of my prodrome symptoms and one of the first sign of a Migraine attack beginning. One reason this symptom is so frustrating to me is that if I don't notice and and be careful, I can snap at people and be truly unpleasant to be around.

Ali131101-200That's the situation in which I found myself on Wednesday. Our elderly cat was being especially needy of attention, and I had no patience for it. Look at that face! How could I be cranky with her? But I was cranky with her when she wanted to sit in my lap, get down, and get back up - over and over again. Then, of course, I cried because I'd yelled at her. Sheesh! I think Ali is smarter than I am though. I was sitting on the floor with her crying, but it didn't faze her. She just climbed into my lap and tried to lick the tears from my face. This, of course, brought thoughts about how did I deserve such a sweet, forgiving little friend.

I went to the kitchen to get some cold water, and John (ever understanding husband) started talking to me while I had the freezer open for ice and couldn't hear him. After 30 years of marriage, you'd think that by now, he'd remember that I can't hear him when the freezer is open. BUT, instead of snapping at him, I counted to 10 while I got my water, then asked him what he'd said.

Now, I'm sure y'all know where this is going. On top of being cranky, I started feeling guilty. The people and pets in my life who are unquestionably understanding and supportive when I get a Migraine don't deserve to be snapped at just because I have a Migraine. My Migraine made me do it! That's both true and an excuse, I suppose. The crankiness is a Migraine symptom, and if I were to follow my own advice, I'd say "Dump the guilt." Anyone who's experienced this knows, however, that it's not that simple.

I've promised myself to work at being more aware of both my body and my moods so I can spot my early Migraine symptoms earlier. If I can recognize the crankiness early, maybe I can spare John and Ali from being snapped at and myself from the resultant guilt.

It occurs to me that I can't possibly be the only person who has this issue. If you have this problem too, how do you handle it? Please post a comment below, and share with me!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine - Sustaining Ourselves

Happy-SundayGood Sunday morning to my Migraine and Headache family! It's inevitable that some of you have a Migraine or Headache today, but I hope all of you are doing as well as possible.

Living with Migraine disease and other Headache disorders isn't easy. We know that, and I certainly don't have to tell you that. It's not just the physical part that's an upstream battle either, so it's important that we sustain our entire being and include our intellectual, emotional, and spiritual selves as well. Sometimes, I think that's even more challenging than the physical.

Since many of us have been struggling with the impact of current events as well as our health issues, it seems reasonable to think about our intellectual, emotional, and spiritual selves today and how to sustain those sides of ourselves.

Over this past week, I had a couple of discussions with Migraineurs on the topic of addressing our mental health needs. One young friend of mine shared that she's had the help of a therapist with issues other than Migraine since she was a teenager, before her Migraines became chronic. She also shared that it was really helpful for her that she had the support of her therapist when her Migraines did become chronic. Not all of us need to see a therapist on a regular basis, but if it would be helpful, we should avail ourselves of their services. Some people are hesitant for whatever reasons, including the stigma attached to mental health issues. We need to realize that there is absolutely no shame and nothing to be embarrassed about. Mental health conditions are based in biology, just as other diseases.

I've been open about saying that I cope with major depressive disorder along with Migraine and some other health issues. Over the years, I've had a few sessions with psychologists as well as a psychiatrist. Some Migraine and Headache clinics require a mental health assessment for their patients. Given that major depressive disorder is so common among Migraineurs, I think this is an excellent idea. The assessment serves two main purposes:

  1. To evaluate patients for major depressive disorder and other conditions, and ensure that if we need treatment, we're getting appropriate and adequate treatment.
  2. To evaluate our coping skills for living with our headache disorder(s).

Some of us benefit from regular visits with a therapist. Some of use don't necessarily need to go that route. Still, we have to meet all of our needs. Here are some of the methods I employ to meet my intellectual, emotional and spiritual needs:

  • Learning. There's always more to learn about Migraine. Learning allows me to understand what my Migraine specialist is talking about and reduces the feeling that my Migraines are beyond anything I can do to manage them.
  • Meditation, prayer. My days usually begin with coffee, prayer, meditation, and a bit of Bible reading. This allows me to "center" myself for the day, and I find myself to be more productive and better able to concentrate when I start my day this way.
  • Simple quite. Even if we're in a silent room, our minds aren't necessarily quiet. This is move important today than ever before. Because of television and radio news, the Internet, and other sources of information, we can easily become overwhelmed — not only with conflicting information, but also with tension, fear, and other negative emotions from news, harsh political campaigns and more. This makes it more important than ever to just "be." We need down time away from all of the "noise." I sometimes just sit, close my eyes, and focus on breathing deeply. Other times, I drive to the river so I can just sit and watch it flow by. We all have to find what works for us.

Do YOU have methods for sustaining yourself — physically, intellectually, emotionally, and spiritually — that you'd like to share? If so, please leave a comment below. Thanks!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine - I'm a Person, Like You

Happy-SundayHappy Sunday to my Migraine family! Some of you had a horribly difficult week. Here's hoping that next week is kind to everyone!

Today finds me feeling more than a bit melancholy. Some of my friends and I have recently discussed feeling this way, attributing it mostly to current events around the world - events such as terror attacks, war, the plight of refugees fleeing from war, the heart-breaking photos of innocent children in war zones, etc. We've also decided that the tenor, name-calling, and all the rest of the BS coming out of the Presidential campaign doesn't help matters any. For weeks now, we've talked with each other and concentrated on Migraine and Headache education education and advocacy efforts - mainly because we can't think of much to do about the issues that are bringing us down, but we can do something about education and advocacy.

Friday evening, I shared a link on my Facebook page about a woman with Migraine who uses DHE injections to treat her Migraine attacks. The story was about how dramatically the cost of DHE has risen over the years that's she's been using it. When she started using it in the 1980's it cost $180 for 10 doses. Her most recent prescription cost $14,729.99 for 10 doses. That seemed high to me, but when I priced it here, I found that 10 doses would cost $10,700.00. So, even though I found it at a lower cost, it's still prohibitively expensive, especially when you consider that it could take more than one dose to stop a Migraine attack.

One of the reasons this link caught my attention and one of the reasons I shared it on my Facebook page is that I know people who are having a terrible time affording the DHE their doctors have prescribed for them. Both as a Migraineur AND as an advocate, I think this issue needs attention - LOTS of attention.

I honestly didn't even look to see what site the link led to. That is, I didn't look until someone commented on it on my Facebook page saying, "Please keep political endorsements out of your posts. Surely there was another way to get this information." When I first saw the comment, I was stunned. Then I got angry. It's a Facebook page. It's MY Facebook page. What on earth?

Yesterday afternoon, I received a private Facebook message from the woman who posted that comment. She apologized, saying that she had a Migraine when she made the comment. I thanked her on Facebook, and if she's reading this, I thank her here. I truly appreciate and totally accept her apology. Migraines can really mess with us, and I can totally understand.

Had her comment and subsequent personal Facebook message been the end of it, I wouldn't be writing this post. Later on yesterday afternoon, I received a private Facebook message from another Facebook "friend." Again, I was stunned. Then I was frustrated, hurt, and angry. That message said:

"You're supposed to be a patient advocate so you shouldn't be taking sides in the upcoming election or posting links to candidate web sites. Your opinions should be kept to yourself. I have always respected you and your work as an advocate, but if you continue posting political endorsements, I'm going to unfriend you."

What? First of all - again - my posting the link to that article wasn't a political endorsement. I posted it because of the issue with predatory pricing of DHE.

Now, I want to make a few points:

  • Nobody is going to agree with another person all the time. That's just life. Anyone who accepts only people they agree with all the time are going to get very, very lonely.
  • Everyone is entitled to their opinions - even patient advocates.
  • It wouldn't be at all out of line for a patient advocate to endorse a candidate based on their positions on health care and other issues that impact patients. I choose not to - precisely because of nonsense like this.
  • I am not a machine programmed to always say what others want me to say.
  • I am a Migraine patient, much like those for whom I advocate. Being an advocate doesn't make me perfect; nor does it take away my rights to free speech as an American citizen.
  • It is not a sign of respect to attempt to tell someone what they can and cannot say or threaten to "unfriend" them on Facebook because you disagree with a link they post.

Wrapping Things Up:

I've grown weary of rudeness, intolerance, and negativity. The tone and aggression of the current Presidential campaign seems to be spilling over onto other people. To me, all the name-calling, negativity, and nonsense of the campaign is unacceptable. Thus, it follows that I also find it unacceptable when such attitudes aimed at me or anyone else.

Yes, I'm a patient advocate. But, I'm also a person and patient in my own right, and I have strengths and weaknesses, feelings, the right to express myself, etc.

Here's something I hear people asking over and over again, and I echo it, "Why can't we all just get along?" Whether we believe in "the golden rule," karma, or whatever, we should be treating others as we wish to be treated. Imagine how much better everyone's lives would be if more people lived by that rule!
      

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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