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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