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"

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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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Sunday Thoughts on Living with Migraine 7/17/16

Happy-SundayGood morning! I hope the weather is pleasant where you are and that Migraine (and all other headache disorders) will be kind to you today. Sunday has become the day when I take some down time to review the week that has just ended and think about the week to come. Inevitably, my thoughts turn to my Migraine family and how y'all are doing.

Last week was another one filled with news of violence, terrorism, and war. We're all feeling it. For some, stress can be a Migraine trigger. For others, it's not the stress itself that trigger Migraines during stressful times — it's things we do or don't do during stressful times that are the true triggers. So, I want to remind everyone that we need to take time away from television, computers, phones, and other sources of news to just "be." We must take care of ourselves, or we can't take care of our families and be there for people who count on us.

Here are some avoidable triggers that we may encounter during stressful times:

  • Not drinking enough fluids, and becoming dehydrated.
  • Drinking too much caffeine.
  • Grabbing quick foods and snacks that contain MSG or other ingredients that are Migraine triggers for us.
  • Skipping meals or eating at irregular times.
  • Not sleeping well, or sleeping on an irregular schedule.
  • Crying.

Speaking of triggers, a friend texted me the other day to say that she and her husband were away for a two-week vacation, and she'd awakened each morning so far with a Migraine. When I asked if she and hubby were getting up at the same time on vacation as they did at home, she told me that they'd been sleeping in. She texted me the next day to say they had set an alarm and gotten up at the same time they would have at home, and... NO Migraine!

So, my take-away points from last week are:

  • We need to take time away from the news.
  • We need to take care of ourselves.
  • There are some avoidable potential Migraine triggers that we can encounter more during stressful times.
  • If you find yourself waking with a Migraine, a sleep issue may be the trigger.

If next week starts feeling overwhelming, please be kind to yourself. Take some time to close your eyes and breathe deeply, to meditate, to think of the things that make you happy. For many years now, I've taken some quiet time first thing in the morning to pray, meditate, and center myself for the day. That habit has made my days better. Lately, I've found myself needing to repeat that time in the late afternoon or early evening. If you need this kind of break, please take time for it. We can't allow ourselves to feel that we're to busy to take that time to care for ourselves.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

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Sunday Thoughts on Living with Migraine 7/10/16 - What Truly Matters?

Every-life-mattersGood morning, and may Migraine be kind to you today. Sunday has become my day to take stock - to review the week gone by and look to the week ahead.

Last week was a tough one for everyone, but not necessarily because of Migraine. Last week was one during which, even if we had a Migraine, we were more concerned with the real-life horror going on around us. Last week, it seemed that hatred and death were behind every news story. We heard, "Black lives matter," and "Police lives matter," and both are right. They're not mutually exclusive.

What was perhaps even more troubling to me was how the anger and hatred trickled down into people who weren't involved in any of the events and how it manifested. On my Facebook news feed, I found FB friends posting such hatred and vitriol that I was shocked — and horribly saddened. Some said such vile things that I "unfriended" them and blocked them from my Facebook page. Being Facebook friends is voluntary, and I won't voluntarily bring that kind of negativity into my life.

This morning finds me sad and even frightened. Reacting to violence and hatred with more violence and hatred won't fix a thing. It hardens the heart and darkens the soul. Where is our country headed? Where is our world headed?

This may seem simplistic, but it's true — Acting or speaking from violence and hatred are decisions people make, and too many people are making that wrong decision. The consequences of that decision are what we're seeing.

Regardless of religious preferences, these verses from the book of Matthew make sense:

Matthew 22:36-40King James Version (KJV)

36 Master, which is the great commandment in the law?

37 Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.

38 This is the first and great commandment.

39 And the second is like unto it, Thou shalt love thy neighbour as thyself.

40 On these two commandments hang all the law and the prophets.

Here's hoping that the coming week is less eventful. Wouldn't it be great to have a boring week?

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

Follow me on    or 
 

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