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 – 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 – 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 - 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 8/14/16 - Long Migraines

Happy-SundayHappy Sunday to my Migraine family! As always, I hope you're doing well and that your head is being kind to you.

In a Facebook group, I just replied to a woman who had posted about an eight-day Migraine. Yikes! If I'm reading her original post and her subsequent responses correctly, she hasn't called her doctor about that Migraine.What has me thinking so much about this topic is that it's not unusual to see people posting about long Migraines.

I'm not sure why, but for some reason, it always surprises me when people have a Migraine that's been going on for days, but they haven't called their doctor. So, I'm theorizing about why people don't call their doctor when they find themselves in this situation. Maybe it's because...

  • they don't have the kind of patient/doctor partnership that I have going with my doctor.
  • they don't realize that it's not "normal" for a Migraine to last longer than 72 hours.
  • they don't realize that we should have access to rescue medications to use when our first-line abortive medications fail.

Whatever the reasons, my heart goes out to people who have these horribly long Migraines, and don't seem to have anything to do about them. Here are a few points about long Migraines and their treatment:

  • A Migraine attack generally lasts from four to 72 hours.
  • When a Migraine lasts longer than 72 hours, it's termed "Status Migrainousus," and we should contact our doctors for help breaking the Migraine.
  • Our doctors should be willing to work with us on a plan for times when our first-line abortive medications don't work.
  • It is not unreasonable for us to expect our doctors to provide us with rescue medications as part of our plan for times when our first-line medications don't work.
  • The emergency room and urgent care facilities are not good options for Migraine treatment. We're far better off getting help from our own doctors.

The bottom line here is that I hate to see people suffering and perhaps even taking risks. Asking our doctors to work with us on emergency plans and to prescribe rescue treatments isn't at all out of line. It's a very reasonable request, and one that the Migraine specialists I know are happy to discuss with their patients. There may be times when every option we have at home fails, and we can't reach our doctors, but those times should be very rare. With our doctor's help, we should have the tools we need to care for ourselves and, when those fail, be able to reach out to our own doctors for help. That said, we do need to not wait until evenings or weekends to call if we can call during office hours. If your doctor isn't willing to discuss an emergency plan and rescue treatments with you, consider a new doctor. It's your health at stake. It can be difficult, but we all need to be our own best advocates, recognize our needs, and take reasonable steps to see that those needs are met.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine 8/7/16 - Being Cautious

Happy-SundayGood morning, Migraine family. I hope you're taking some time for yourself this weekend and that your Migraines are being kind to you.

Last week, for some reason, I found myself thinking about a young woman named Abi, so I shared her story on Facebook and Twitter. If you didn't see it, take a look at I Still Remember Abi and Her Last Migraine. Abi was a young Migraineur whose parents not only didn't understand her Migraines — they'd gone so far as to accuse her of faking them to get attention. She had a Migrainous stroke, and we hoped her parents would be more understanding. Sadly, not long after she was discharged from the hospital, she had another Migraine and another stroke. The second stroke took her life.

The reason I'm talking about this again today is that we should all view Abi's story as a cautionary story for all of us. Migrainous strokes aren't common, but they do happen. It's common for us to think, "It won't happen to me," but we can't know that. It can happen to us, so part of caring for ourselves is being cautious. Migraine and stroke can present with many similar symptoms. I asked Migraine and Headache Specialist Dr. David Watson how we can tell the difference between a Migraine and a stroke if we're having symptoms that make us uncertain. He told me that doctors can have problems telling the difference sometimes and have to order imaging studies to be certain. He was also quite clear that we need to seek medical care immediately if we're in that situation.

We all have to exercise our own judgement about when to seek medical care, of course, but sometimes, it seems that we dismiss warning signs too easily. We don't feel like having to go out to the doctor, we don't want to bother anyone, and so on. It's so easy to promise ourselves that we'll do something tomorrow if continues. When tomorrow comes, we put it off another day. Sound familiar? Putting things off can present us with two problems:

  1. Waiting too long to get help.
  2. Running into a weekend or holiday when our doctors are out of their offices.

When we need help, the emergency room should be saved as a last resort unless our doctors tell us to go there. ER's are busy and noisy. The doctor there don't know us or our medical history, and many of them know little about treating Migraine. So, it's really best if we call our own doctors for help.

Times when we should call our doctors include:

  • If we experience new or frightening symptoms.
  • If we're having our "worst Migraine ever."
  • If our Migraine is accompanied by:
    • unresolved loss of vision
    • loss of consciousness
    • uncontrollable vomiting
  • If the pain of a Migraine attack lasts more than 72 hours with less than a solid four-hour pain-free period, while awake.
  • If we have a head injury.

Something else we can do is have a conversation with our doctors about when we should call them or seek emergency care.

The bottom line here is not to take unnecessary chances. There have been times when, in the middle of a Migraine, anxiety caused by the Migraine led me to panic and feel there was something seriously wrong. At those times, my husband has helped me enormously by asking me if I was having unusual symptoms, if the Migraine was worse than usual. He'd sit with me and help me take deep breaths to calm down. Once I worked through the panic, I realized it wasn't an unusual Migraine after all. That said, if there had been any question left, I'd have called my doctor. I've talked with my doctor about when to call for help, and developed a check list from that discussion. With that list, I now feel that I can determine if I need to seek immediate care, even if anxiety and panic are rearing their ugly heads.

Please, remember Abi, and don't take unnecessary chances.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine 7/31/16 - A Letter to Spouses

Happy-SundayGood Sunday morning to you all. As always, I hope the day and your head will be as kind to you as possible today and in the coming week.

Yesterday, I had a heart-wrenching conversation with a friend who has Migraine. She finds herself in a situation that's all too common. She has chronic Migraine and is struggling with not just the Migraines, but with a pretty much total lack of support from her family.

This type of situation makes me extremely sad. It also makes me pretty angry, especially when it's a spouse who's not being supportive because it's... well, it's just so wrong. As cliché and naive as this may sound, when we marry, we pledge to support each other, "in sickness and in health." People who don't really mean it, shouldn't get married. Once married, people need to stick by their pledge. To me, it really is that simple.

Yes, I know this may be somewhat futile, but I want to reach out to spouses of other Migraineurs who aren't supportive of their spouses. Here goes:

Dear Migraine Spouse,

You're married to someone who has Migraines. Migraines truly aren't headaches. Migraine is a genetic neurological disease caused by genetic predisposition and an overly excitable brain. It's characterized by episodes best called "Migraine attacks." If your spouse gets a headache during their Migraine attacks, that headache is only one symptom of the attack, and it may not be the worst of most debilitating of their symptoms. In fact, some very debilitating Migraine attacks occur with no headache at all.

Migraines can be triggered by many different things including changes in the weather, hormonal fluctuations, exposure to fragrances and other odors, some foods, and more. Triggers vary from one person to the next. Unfortunately, we can't stop our Migraines by simply changing our diet or exercising more. It's just not that simple. Some people's Migraines are so severe that they are unable to work, participate in family activities, or do many things that others take for granted.

Migraines can actually kill by causing fatal strokes or so thoroughly robbing people of hope that they take their own lives. Support from our friends and family is as vital to our survival as good medical care.

I'm sure your spouse's health issues seem burdensome to you. But, I can guarantee you that their Migraines are far more burdensome to them than they are to you. It can be difficult to know how to help your spouse with their Migraines. It can also be difficult to not be able to do more to ease their pain and suffering. There is much you can do to help your spouse, starting by supporting and believing in them. That's possibly the most valuable thing you can do for your spouse.

Learning about the type of Migraines they have and their treatments is also important. If you don't understand their Migraines and treatments, it's going to be difficult for you to help and support them. It's often a good idea for spouses to go to the Migraineurs' doctor's appointments with them. This gives you an opportunity to learn, know what the doctor is telling your spouse, and ask any questions you may have.

There are still many misconceptions about Migraines and a great deal of stigma attached to the disease. You need to know, however, that Migraine is a real neurological disease every bit as much as multiple sclerosis and epilepsy are. It's just perceived differently by many people, possibly because it's invisible, and there are no diagnostic tests that say, "Hey! This person has Migraine disease."

If, for some reason, you haven't been supportive of your spouse in his or her battle to live with Migraine disease, I hope you'll search your heart and work to be more supportive. Please let your spouse know that you want to understand and to help them.

Thank you!

TeriSig250White

If you want a copy of this letter, you can download it.

I'd be remiss if I didn't also say that there are many, many spouses who are incredibly understanding and supportive of their Migraineur spouses. They're the heroes who prove that people who have never had a Migraine in their lives can indeed understand what it's like for us to live with Migraines. John (my husband) is, thankfully, an example of this. He's never had a Migraine, and seldom even gets a Headache. Yet, for the last 30 years, he's been here for me when a Migraine strikes, when I needed to see a specialist eight hours from our home — for all of it. He may not know what a Migraine feels like, but he absolutely understands what it's like for me. So, to all of those spouses — Thank you! You're all heroes, and I love all of you.

Here's hoping that the coming week is gentle with all of us.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine 7/24/16

Happy-SundayGood Sunday afternoon to my Migraine and Headache family. It's a beautiful day here in West Virginia — pleasantly sunny with a nice breeze and no drastic weather changes predicted in the next couple of days. I hope the weather where you are is being kind to you and that your head is being kind to you today.

I spent a couple of days in Phoenix last week. Wow! Talk about hot. It's definitely not a time to be spending a lot of time outdoors there unless you do well in temperatures over 100 degrees.

For a while now, I've known that I really need to learn to travel lighter. When I went to a conference last month, I had a carry-on, my backpack, plus the Spring TMS device for my Migraines to take on the plane, and the suitcase I checked weighed 53 pounds. I had enough trouble getting my luggage from the baggage carousel at the air port out to a taxi, and more trouble when I got to my hotel only to find that there were no bellmen to be found. I was sharing a room with a friend who breezed in with two carry-on sized bags for the entire week. Grrrrrrrrrr. OK. If she could travel that lightly, I could certainly do better.

Travel-LightSo, here's my attempt at doing better. I switched to a slightly larger backpack that would hold my laptop and most of the items from my carry-on. The big job was convincing myself that I didn't need those extra shoes, the extra tops I tend to pack, the spare pair of pajamas, and all the other "stuff" that really could be left at home. The suitcase I packed was a smaller one than usual, one that I could actually drag off the luggage carousel at the airport with minimal effort.

My reason for sharing this with you today is that some of my friends who also have Migraines have said they have some of the same issues I have with packing and ending up with luggage that's unwieldy and makes travel more difficult.

I'm happy to report that I did indeed have everything I needed, and it was so much easier to travel this way. For my next trip to Arizona, I'll need to take more clothes since I'll be there four days longer, but I'm determined to take less than I've taken before and to enjoy how much easier it is to travel with less.

If you have any packing or travel tips, please leave a comment to share therm!

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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