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A View on HM from a Non-HMer

Because my best friend has been dealt the HM card, I have had to learn a tremendous amount of information and we have had to change the way we do things. For the longest time, there were no exact answers as to what was wrong. We knew what happened and could sometimes tell when or how soon but we did not know what or why these things were happening. And then she was given the HM diagnosis. It is still one of those diseases that I am constantly questioning because it affects people in completely different ways. But before all of this happened, her world was completely different. 
 She was one of those people that wanted everything to be planned out and was also the type of student that always pushed herself and wanted to be the best. She was an excellent cheerleader and had so much energy and life in her. She also drove me around when she first turned 16. These are the types of things that were taken away from her because of HM. 

Obviously plans changed when her health started to make her life miserable. It was literally one thing after the other and her condition was always changing. As someone not living the life and being there to support her, there really wasn’t much I could do. I know that Hadley and her family spent most likely countless hours or even days trying to look for answers and I know that I did my fair share of also looking. Hadley would send me names of diseases or conditions and ask me what i thought and if it fit everything that kept happening to her. I also had to convince her that no, she did not have cancer. Darn WebMD! But when they finally got the answer to the many challenges she faced everyday, it was still hard because there were no “fixes.” At least now she can tell people what the name of her disease was, even though nobody has ever heard of it and it is the constant explanation of “HM presents like a stroke, blah blah blah.” The usual. Her life has yet to be the same since her Hemiplegic Migraine diagnosis.

 Now, Hadley has weekly infusions, which are wonderful with her port, emergency room visits when the pain becomes unbearable, IM injections and a ton of different medications. Because of HM and her medications, she battles nausea, seizures, insomnia, dehydration and lock jaw, all of which are only a handful of the daily struggle. Being a supporter of an HMer requires me to make sure that she is eating and drinking something occasionally and offering to hold her hair if the nauseas became too much. Or even spending the evening with her when she is unconscious and seizing knowing that when she does wake up, she’ll know that I am still there for her and willing to go sit in the emergency room for 9 hours because her face swelled up. Which is another new symptom of her HM apparently.   

 Honestly, besides the drooping of her right side, you would never know the challenges that she faces every single day. Because of this, our friendship has grown stronger and has definitely required more thought. Before we plan anything, I know that there is a chance that we will have to raincheck our plans. HM doesn’t stop for anyone! And then there is strategically planning our outings to avoid any possible triggers. If it’s too hot, we plan something indoors. If there is any chance that it will have loud music or noises, we go ahead and cross that one out. Why make an already awful migraine even worse? We do the “normal” things as much as we can, keeping in mind that we may need to take breaks in between or stop for a good ol Benadryl shot. We have even started having to discuss what day she should get her infusion in order to make it to certain planned activities. It’s that extreme because she has more bad days than good. Another part of being a friend of someone who suffers from HM is knowing their limits. Well, maybe this is just Hadley because she is so stubborn! But really, she tries to push herself as much as she can and I have had to learn when it has been enough and when it is time for me to step in. Knowing when and what type of situation she can handle is one thing that I have had to adjust to that I don’t think other people even consider. Actually, I know for a fact that it doesn’t cross other’s minds unless they can physically see that she is not looking well. That is something that is so frustrating to me. And that’s not even the worst of it.

 Seeing my best friend in so much pain is not something that I wanted to see. Ever. But I knew that at this time, she was going to need someone to be there for her, needless to say that when all of this started, we had no idea how crappy it was going to become. But, there wasn’t a single thing i could actually do for her and it absolutely broke my heart. It was not only affecting Hadley in every way imaginable but it was also affecting me. There would be times when I couldn’t handle it and my mom would hold me while I cried. If it affected me that much, can you even imagine what it was like for the person suffering from HM?

  HM has changed her life in basically every way possible, her family’s life, my life, and with this blog, hopefully it’s changing someone else’s life too.

HM is awful and I pray that HMers find relief at some point. 

And to all of the people supporting HMers, stay with it. It’s a long, unpredictable journey that they are battling and they’ll need someone at some point.   

~Ashley

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4 thoughts on “A View on HM from a Non-HMer

    1. She absolutely is. I know we’ve compared stories and experiences through the support group. If your daughter would ever like to chat, I would be completely willing. Thank you for your support ❤️

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  1. I have been suffering with symptoms for about 5-6 months now, but migraines have been a part of my daily life forever. I’m curious about this infusion and what it is as well as how benedryl helps??? Thank you for this post.

    Liked by 1 person

    1. I’m sorry to hear you’ve added these nasty symptoms to the list. Isn’t it weird to hear how much Benadryl has helped me?! My current dr and I don’t entirely understand it, but we’ll take it! It was actually my previous specialists’ idea. I know she used it before, but my current dr has started to use it with positive results and some people I’ve talked to about it that have began trying it have seen positive results as well! Same goes for my infusion! My dr now has a handful of patients successfully on them, and two other HMers I’ve spent time talking to have seen success after getting their dr to agree to the infusions! If you go to my “contact me” page on here you can email me and I can share some better details with you 🙂

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