LilyAn

@meganlilyan | contributor
The state labeled me as permanently disabled due to chronic hemiplegic migraine. That was a blow, because I still have some great hours where I can enjoy my family and model a life well lived for my four children. During these hours I hate the idea the world sees me as disabled, as someone taking from society as opposed to supporting our community economically. My children are my contribution to the world. They will be doctors, because they have seen illness. They will be teachers, because they have learned. They will be fathers and mothers, because they have experienced love and joy regardless of circumstance. They will be soldiers, because they have seen battles won. They will be peacemakers, because they have experienced the pain of discord. I am not the illness that takes most of my daily moments, I am the accommodation of what I choose to do with the healthy moments I am given.
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Tonight I light every candle

<p>Tonight I light every candle</p>
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Growth

<p>Growth</p>
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Tessa Markham

What I'd Replace the Number Chronic Pain Scale With

Every time we go into a doctor’s office, one of the questions they ask us is, “What’s your pain level, on a scale of 1 to 10?” or some variation thereupon. As chronic pain warriors, that scale can be immensely frustrating. A generic quantitative measurement is absolutely necessary in the medical profession, but it’s also obtusely geared toward acute pain. It’s a hell of a lot easier to put a number to how badly a stubbed toe hurts than to a stabbing pain you’ve been feeling for going on three years. It’s easier because it’s immediate and you have a baseline of nothing to compare it against. With chronic pain, our baseline is constantly shifting, and our numbers sometimes mean different things from one day to the next. If a person without chronic pain reports a pain level of 5, it could mean 100 different things. Not only can that number change from day to day based on what kind of pain — stabbing, throbbing, burning, etc — but also how widespread the pain is. For me, a level 5 migraine is leagues away from a level 5 fibromyalgia flare. With the former, the pain is basically only in my head and maybe my neck. With the latter, the pain is in everything. It’s in all of my joints and through my skin and also in my head and neck. A level 5 on that kind of a day is drastically different than a level 5 on another day because that one affects everything I do. With the same quantitative, numerical answer, I’m equally likely to not be able to sit through an entire lecture as I am to be able to attend without even taking medication. Even more frustrating than how one-dimensional the scale is how exclusive it is. The scale only asks about your pain. For those of us with chronic illnesses and chronic pain, odds are that pain isn’t our only symptom or complaint. There are days where the pain scale seems absolutely useless because it paints such an inaccurate picture. Yeah, it might only be a pain level 3 but that doesn’t mean that it’s any easier to function. Maybe nausea is keeping you within throwing distance of a toilet so you can’t leave the house. Maybe you have brain fog and aphasia and can’t put a sentence together without help. Maybe you have vertigo or are lightheaded and so can’t stand or walk around well. None of those are covered by the 1-to-10 pain scale. What we need is a functionality scale. We need a quantitative measurement that can tell people how well we’re able to go about our day. Pain would be a factor, but it wouldn’t be the only measure. It should be or could be used side-by-side with the pain scale, but this way we’re able to accurately tell people — especially doctors — to what degree we’re being affected from day to day. The functionality scale I made for myself reads something like this: 0 : no disruption or impairment, no symptoms presenting 1 : very “high functioning,” no noticeable limitations 2 : rare occurrence of symptoms, minimal interference 3 : starting to notice symptoms, very occasional disruption 4 : normal function requires some effort 5 : symptoms interfere with all aspects, eg. may need to miss class 6 : no longer able to do (cognitive) work due to symptoms, symptoms are constantly noticeable now 7 : symptoms prevent any semblance of normal functioning, eg. cannot even use the microwave to cook 8 : need help with basic tasks due to increasing interference 9 : can only tend to self and body due to the prevalence of symptoms 10 : fully incapacitated by symptoms These numbers won’t necessarily be your numbers. Maybe your 5 and my 5 look vastly different, but that’s OK. It’s just one example of the downfalls of quantitative measurements like these for something as subjective as pain and experience. For any doctors who read this, believe us. We promise we don’t do this or say this for attention. And try to please remember that our scales have shifted, that we’re used to a certain amount of pain throughout our day. The presence of that level of pain becomes our new 1, and thereby every number after that is an amount of pain that’s likely far greater than what you would think. Whatever number we say, the amount of pain that it indicates is more than what it would have been before we became warriors.

To My Wife on Days When the Stress of My Chronic Illness Overwhelms Us

Good Morning Sweetheart, It’s the morning after. What a day yesterday was! Not quite what either of us hoped for or expected. What should have been an enjoyable, peaceful day, turned out to be anything but. Harsh words were exchanged. Accusations levied. Misunderstanding and miscommunication once again led to hurt and pain – all because of my body and the limitations and stresses it puts on us and our family. Some days, like yesterday, my doubts, fears, anger, and hurt get the best of me. Doubts about our future, and your commitment to being with me. Fears about our future, and if you can still love this body I view as broken and beat-up. Anger at my condition and frustration with this prison I sometimes feel trapped in. Hurt at the distance this puts between us physically and emotionally due to my body not doing what I want it to do. First arthritis, then Parkinson’s, and so many other “things” have overwhelmed me. As a young man with multiple chronic illnesses, I never thought I would fight these battles, and I feel guilty and angry at the unfairness of the path you must walk with me. As a young wife, I feel like you should not have to be saddled with this “old man” and that I’m a burden you and our kids must shoulder. Yes, I know these feelings are mainly in my mind and that these are the mental wars I wage daily. I know this is not how you feel every day. I know we all get tired of this fight some days; I know we both do, and I know there are days when like me, you are just “done.” If I feel these things, I know there are days you feel them too. Some days, no matter how hard I fight, these emotions win. It is exhausting, and honestly, that does not help either. Some days, like yesterday, these feelings overwhelm me, and I lash out, and the anger, hurt, fear, doubt, and frustration come boiling out onto you and the kids. My fear and doubts drive me to push you away – maybe before you will have the chance to do the same to me. My doubt drives me to question how you could choose to love me and stay with me, when some days, I feel like I offer so little. I see hurts where none were intended because of the hurt I feel, and things are magnified in my head that really should not be a big deal. It does not help that the medication I take for Parkinson’s accentuates many of these feelings and can cause me to be paranoid and question things I have never questioned in my life – including your commitment to me. As my anger at these things begins to boil, the barriers I use to have in place to guard against outbursts are washed away by this disease, and I explode to those closest to me. Like an out-of-body experience, I watch this unhinged person attack those who love and care the most for me. It hurts me to see the struggles our family has and will have because of me, and some days it is more than I can bear. I am sorry that yesterday was one of those days. I wish I could say it will be the last, but we both know that is not true. I am still trying to figure this out, and day by day, hopefully, we will both find new and better ways to cope. Until then, I hope the love, passion, and thankfulness I have for you show a little brighter than these other things, and that you know how deeply I love you, how blessed I am to have you, and how thankful I am that you still choose me, even with all this pain, suffering, and struggle. Thank you for loving me well, and reminding me that I am more than just this body and that you love me for me – not for what I can and cannot do. Thank you for loving me through this anger and pain, and showing me that I am still loveable, even when I do not feel that way. As I said to you, over 20 years ago, in that first love letter to you, I Love You Always, With All My Heart, Charles

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Every One

<p>Every One</p>
8 people are talking about this
Community Voices

Every One

<p>Every One</p>
8 people are talking about this
Community Voices

Every one

<p>Every one</p>
1 person is talking about this

How Migraine and Mental Illness Impact Each Other

Any time you have a general feeling of being unwell, I find everything else tends to drag you down. There just seems to be not enough energy to get you through the day, you know? You feel weak, sluggish, possibly congested in the sinuses, and more. All in all, it’s frustrating, regardless of whatever illness, infection, virus, or chronic pain flare-up you’re experiencing. For those of us who endure migraine, our mental health can also be pretty significantly impacted. Besides having a throbbing head, potentially visual auras, muscle spasms, feeling nauseated, and more, there’s a mental illness impact as well, not only making the pain seem that much worse, but may involve feelings of anxiety, depression, and more. Dawn Buse, Ph.D. director of behavioral medicine at the Montefiore Headache Center said individuals who suffer from migraine are five times more likely to develop depression than someone without migraine. She also notes approximately 20% of all individuals who have episodic migraine (headaches on 14 or fewer days per month) may have depression. That number climbs pretty dramatically for individuals who have more headaches per month. Thirty to fifty percent of all individuals who have chronic migraine have anxiety as well. Still to this day, the medical world is still not entirely sure what causes migraine, which is pretty significant since 12% of the U.S. population at minimum endure migraine headaches. In a 2015 study conducted by the Department of Neurology at New York University, the Department of Internal Medicine at New York University and others, discovered more than a few fascinating aspects of migraine and their impact on mental health. Patients who have migraine with auras are three times more likely to have bipolar disorder than the general population. Over half of patients with migraine will meet criteria for at least one anxiety disorder in their life. Anxiety disorders are two to five times more prevalent in patients with migraine than the general population, and up to two times more common in patients with migraine than in patients with depression. Patients with obsessive-compulsive disorder (OCD) are also at a high risk of experiencing migraine. Patients with migraine and anxiety spend an average of over $4,500 a year more than individuals without comorbid anxiety. Childhood emotional abuse is a risk factor for chronic migraine, disabling migraine, and earlier onset migraine. At this time, there is limited data on how migraine and attention-deficit/hyperactivity disorder (ADHD) impact one another. Mental health and how it impacts medical conditions and vice versa is no joke. It can have a debilitating impact on life, so much so that those who have the condition who aren’t currently enduring a migraine in that moment can be impacted significantly by symptoms of their depression, anxiety, and/or other mental illnesses. If you endure migraine and mental illness, what are some things you wish others would tell you or encourage you by saying? What things would you really wish that you wouldn’t say?

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Birthday Sunrise

<p>Birthday Sunrise</p>
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