Category Archives: #MHAM

MHAM: My career is like Willey Coyote’s life struggles

Rules for wild e coyote and roadrunner_c286fac5e196549de2c120acb1c6c298

The creator, Chuck Jones, had the above rules for Willey Coyote. As I was reading these I was sympathizing with Willey Coyote. He had a physical handicap and was trying to compensate with his superior intelligence. Coyotes can run 43 mph while roadrunners run 20 mph and coyotes are know for being highly intelligent animals (they set traps for pray, are sneaky, and ways to do less work for higher reward). Willey has reason to feel humiliated by his failures. If he was any other coyote that roadrunner would have already been his snack.

The things that stand between Willey and success are frustrating. A lot like the things that stand in the way between me and a career.

Willey has bad luck with the products and tools that are available to him. They malfunction or Willey fails to use the product properly. And He only has one source, ACME Cooperation. It reminds me of how my body stands in my way. My body malfunctions or I do something wrong and it causes my body to malfunction. Have a malfunction in the wrong time, wrong place and I need a little white flag that reads “help!” My brain is the only source I have. I am told from bosses and coworkers that I could go so much further if I could just get a different one. Just like Willey could probably love to change manufacturer.

Everyone not having troubles at work or in their career are like the Roadrunner. The Roadrunner makes it look so easy to stay on the road, the path to success. Roadrunner is the only one who has a voice. The successful, healthy employee gets a voice. We are stuck in the background trying hard to hide, trying to put on a show. Part of that show is not saying the wrong things, not complaining, not bringing attention to your special needs, and not slipping up. My focus get so wrapped up in showing normal-ness I loose track of conversations, don’t have things to add, panic when asked for my opinion, and fade into the background. “Beeb, Beeb” is what Roadrunner says to Willey. Roadrunner is mocking him, what is wrong with you that you can’t catch me? I become the source of ridicule or target for workplace bullying because of my shortcomings. And I have nothing to say for myself other then I was physically unable because of my disability, unless I am hiding the disability.  Silence is not always golden. Words can cut like a sword.

Willey could stop any time but he is a fanatic. Stopping doesn’t seem like an option. We have tried to hard to quit. Giving up now is utter defeat. Proving “I can do this” isn’t the aim of a career. The aim is to find a place to belong in the workforce that will support you (and your family). With the goal “I’ll show you” you are not finding a sense of belonging and community. You are alienating yourself and creating unnecessary stress. Quitting was hard, it still makes me cry. I worked so hard to get my education and now find myself unable to get a job doing research. A job teaching seems just out of reach. Yes I feel like a failure, a bum, a deadbeat, lazy, a burden. Its all stuff I am told I am. But I had to stop being a fanatic and focus on my health. Adulting sucks damn it.

Willey finds his environment challenging. Even gravity is against him. Me too. At work light, sound, and gravity were always a challenge. Walking, opening doors, pushing buttons on the elevator, and even writing on the shiny white board or turning on the projector were all annoying obstacles that naturally occur in the educational environment.

Willey Coyote is constantly humiliated. His physical injuries were never as deep as his emotional scars. It reminded me of this time I had a seizure and sprang my ankle. The hurt I felt every time I had to say “I had a seizure and fell down a flight of stairs” hurt more then the pain in my ankle and random bruises. I had to laugh it off, say it with a smile, make a joke, and get a chuckle. Just like Willey. He just had an anvil fall on him, but please see the ridiculousness in what happened, please help him deal with the emotional hurt by laughing it off with me. Its not a cruel as it sounds. That is the sad part. I just gave a presentation that included migraine triggers, I wasn’t thinking, it hurt like Hell, please laugh at the ridiculousness of this situation, I think I’m going to cry if you don’t.

How has migraine impacted my career? It has made it nonexistent. I was told I need to fix my little problem before applying for a job. I can’t fix a disability. I am applying for a single class again. Part of me is saying yeah right and the other is saying there6a00d8341ce97953ef01b8d28550f8970c-pi is no harm in trying. But there is emotional harm in getting the job and then not succeeding. Migraine and the stigma I’m being fed has pretty much shattered my confidence. I need to find the fanatic inside me that got me through college to get me a job.


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MHAM 16: The Struggle is Real

Topic: How has the stigma impacted you, and how have you fought it?


People don’t like being reminded that they are not immortal or immune to everything. So it is normal behavior to make it the “sick” person’s fault that they’re body is not in perfect condition. Even when the condition is genetic or result from something the person had no control over, people will find or make up a “reason” this happened to the “sick” person. Then the “healthy” person can say “that will never happen to me.” Then it is normal for the “sick” person to be push out of the social circles. The “sick” person becomes a “downer” and most don’t want them there.

There are a lot of stigmas that impacted me and I could go on. It becomes amazing how labels, stereo types, and such impacts your life the moment a symptom enters your life. And how those make drastic changes in how others see us, how we see ourselves, and how we are allowed to contribute to society over night. So I will rant about a few.

I was a theater major when I got sick. I was honest with my professor and turned down a leading role. The next play I was second lead and I had a few migraine episodes while other students were being jack-asses playing with the lights. (At this point I had not had a seizure yet.) After that show everything went to hell. I lost my job in the workshop and I wasn’t given a part in the next play. I had to do both of those things to keep my scholarship. It went as far for a professor to give a lecture about the importance of staying healthy in order to give performances and do well in acting classes. I went from the best in the department to the outcast in a few weeks. A rumor spread that I was diseased and wouldn’t be able to hack it. And then one professor was surprised her best student dropped all her classes…

In school I was told constantly that I couldn’t do it, I was going to flunk out, and I needed to drop. Why? Because sick people are not able to think critically, learn, pay attention in class, concentrate, or perform academically in general. They also drag down the class and make classmates uncomfortable. Sick people should not live on campus because they lack the skills to care for themselves. So, a sick person is stupid, inconsiderate of your feelings, and should be invalids? I fought it by living on campus, having a kick ass thesis, getting a 3.6 gpa, and being awarded a scholarship to graduate school. There was a bet on if I would make it through my thesis presentation. I encouraged it. There was standing room only. A friend of mine made a killing. I fought the same crap in grad school. I fought it mostly by having a kick ass thesis and getting a 3.6 gpa.

I am a druggie. A druggie is “a drug addict” or a person addicted to a specific substance, typically illegal. I am dependent on my prescription medication. I need it for my brain to function properly.  If I stop taking it, my body will have an adverse reaction. Prescription medication is illegal without a prescription. Would you like to see my prescription? This is a major problem with having to take medication in public. Suddenly I am explaining to strangers what I’m taking and why so they do not call the police. Would I really be popping illegal pills after an alarm went off in public? Stranger, if this looks like an illegal drug, how do you know? I’ve never seen one…

Why am I a unemployed bum living in my parents home? Maybe because I can’t live on my own and I do a lot worse when I work. Why don’t I have an online job? Please help me find one that does not require me to be on the phone or type all day or that is not a scam. What is that, no? I am in a lot of pain, pain makes it hard to function because it does this to the body (insert list) which make it hard to function. The doctor agrees it would be hard for me to work and I shouldn’t work for more then 10 hours and that if I do work it (insert list). Long educational talks that are repetitive and they don’t listen to anyway because most people just wanted to say “Your lazy, should be working, living on your own, and need to stop being a burden to your parents.”

Why are you working being a pain in our ass? Because I need to pay bills? I’m told I need to stay home and live off of disability. That I am too sick to work. My pain makes me unreliable, bad worker, undesirable, disabled, need a better doctor, I must be lying about seeing a doctor, I don’t eat, I eat the wrong foods, I don’t sleep, I must


have had a brain injury I am lying about. It was crazy the things I herd and was told. I fought back by not quitting. I decided that my bosses were going to have to fire me. But each time I ended up quitting on doctor’s orders. Oh it is so annoying.

This is how I slowly watched my world change. How I saw my friend

s dwindle, place in society change, my roles shift, other’s expectations from me disappear, my dreams go out the window, my future change. Because of physical limitations and stigmas.

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MHAM 13: Management

Topic: How do you incorporate the whole person in your Migraine and Headache Management – the physical, intellectual, and emotional?

I need to get back into working out three to four days a week. I use to switch out light cardio and yoga followed by a nap. It helps me with my balance. I eat when its time to eat. I drink mostly water and plenty of it. I rest and sleep when my body tells me to. It may sound stupid/easy but its not and it’s not something I could really do until I quit working. I am doing a lot better since I started doing these basics.

I read pain, migraine, persistent head pain, and seizure related articles and try to learn everything I can. I also got two introduction to sociology of medicine books that I want to read. I write this blog. Right now I guess I need to learn about Trump’s healthcare. My Dad seems to think it’s going to be great and buys into all the “chronic pain” stereo types and prejudices. I’ll I’ve seen about it is that it has been behind closed doors and nobody actually knows what it is. My pain levels make holding trains of thoughts difficult. Holding verbal, spontaneous arguments are really hard for me. I tend to fill my brain with information that becomes useless because of my unpredictable critical thinking skills. It can be like having a ship whose cargo holds are full of merchandise but the ship gets thrown off course by a hurricane and the merchandise boxes break or get water damage. Its the same as receiving comments like “you are really useful on your good days, you should have more of those.”

Jesus is always the answer. Why does music written in a minor key sound “sad” or “downbeat,” while music in a major key sounds “happy” or “upbeat”? Answer: Jesus. Social and medical research has shown relationships between religiosity and better health. I relay on my faith a lot to get through a lot of the crap my body puts me through. When people ask me questions along the line of “why haven’t you killed yourself” or say “I would have killed myself by now” I say “because I have Jesus.”

Prayer and worship activates several parts of the brain and most notably the left. 6a00d8341ce97953ef01b8d28550f8970c-piPatients who know they are being prayed for heal faster then patients who are not being prayed for. Prayer/meditation can also release endorphins and increase your sense of well-being. If your thinking “yeah right, phhfff.” It is not uncommon for nonreligious people to join religious groups for the the social interactions, friendships, and support groups. A church is also a great place to start a local support group for the community.

To be honest, I don’t know if I can separate physically and emotionally better sometimes. I measure my ability to cope with emotional health a lot. My ability to cope is also tied to the amount of pain I’m in. So sometimes I get confused.

Chocolate is always the answer.  What, exactly, is it about good jokes that makes people laugh? Answer: Chocolate. But if someone looks at you funny you can redirect with just kidding family, family is the answer.

Chocolate, in serving seizes. Dark chocolate is a good source of copper and magnesium which are minerals your brain needs. Dark chocolate also boosts your immune system and blood flow to the brain. It also gives off boosts of endorphins and serotonin, it helps your mood. But chocolate does has caffeine and therobromine–these are the chemicals that can trigger migraines, so you have to be careful and know how much of that you can tolerate. I went to my grandma’s for a few weeks when my g-ma died and again that summer. She talked to her doctor about it and portioned me out a one ounce serving for the whole day of 50% dark chocolate. I held it together better. I can manage better with the pain and emotionally. Now if I don’t have dark chocolate I will eat Nestle semi-sweet chocolate chips, 45% cocoa. Does eating chocolate actually belong in physical?

Family is a great source of support. When I’m sad or having a hard time coping I can go across the hall to see my sis or go down the hall hunting for a parent or down stairs for my sister or my niece. Or trip over the dog. I can call my brother and sis-in-law too. A lot of the time I call my Uni or go for a play date with her, or move into her apartment for a week. A change in pace can help a lot.

I also listen to music. It can move me and help me sleep.

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MHAM 12: My Cave

Topic: What’s in your “#Migraine or #Headache cave?”

My bedroom in my cave. Making a even this corner of the house me-friendly is hard. From the best heating pad to kind of black out curtains, it is lot of trial and error got us to where we are now.

  • Ceiling light is an incandescent 50 watt bulb. It is getting hard to find those things.
  • Lamp 20 watt incandescent and closet a 40 watt incandescent.
  • Floor length brown black out curtains.
  • Medium purple walls (white walls add brightness and a medium blue made the room a little too dark with the lights off and to bright with the lights on around dusk. I usually don’t turn on lights until its dark outside)
  • Drawers next to my bed: medicine, tissues, heat pad doll, color books, drawing/coloring stuff, mp3 player/speaker/headphones, and things I use every day.
  • Table with computer and drinks
  • Hanging off my bed frame: noise cancelling headphones, crotch project bag, and a sweater.
  • End of my bed, extra blankets/pillows, and Chewbecca/teddy bears.
  • Trash bin and power outlet next to my bed
  • An aloe plant to purify the air
  • TV with Netflix, Dramafever, Pandora, and Youtube apps downloaded. (I have the brightness turned down to almost the darkest setting)
  • chair with foot stool
  • I keep most of the materials I need for my pain management projects in my close
  • And Karma’s toys line my doorway, that is where Karma thinks they belong

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June 21st Migraine Solidarity Day

Wear a pair of sunglasses to show support to migraine sufferers June 21st.

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MHAM 11: Creative Expressions

Prompt: How does #Migraine and #Headache impact your creative expression?

I studied roles people do within a church and I read creative people will always find a way to create. Being sick had a huge impact. Before I was sick I was in theater. I created sets and brought stories to life. Bright lights, loud noises, and memorizing in short periods of time ended that passion.

The school councilor at my university taught me art therapy, although he 6a00d8341ce97953ef01b8d28550f8970c-pididn’t call it that. Easy, meticulous, and requires concentration were the requirements of my new artistic outlets. Coloring drawings with small spaces were first approved then knitting.

My sociology professor from the same university is the other person who gets the credit for helping me redirect. He taught me that academics can be a creative expression if given the freedom to think for yourself. I love finding patterns and connections within society that help us understand “why.”

Now I crotchet and sew. I change the bulletin boards at church, draw ribbon art, and color. I write this blog. What I do or if I can do anything depends on my physical condition of the day.

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MHAM 8: Fight Song


Post Topic: What is your #Migraine and #Headache fight song? Tell us why you chose it.
I had a hard time finding the challenge, I started late, but I want to do this one because of how important music is to my pain management.


Breathin‘ by Shinwa

Botox is hard. The first time I was sitting on the table eyes closed, tense, and rigid. I was counting, thinking about the pain, how I was not going to cry or flip, and I was praying hard. I was think singing the Doxology in hyper speed and repeat.

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heav’nly host;
Praise Father, Son, and Holy Ghost. Amen.

My doctor patted me on the shoulder about five shots in, I need you to breath.

I felt like it was only me, the pain, the needles, and an empty lonely space. The doctors encouraging words didn’t help.

My thoughts suddenly went completely blank mid “creatures” for a few seconds, then I herd the end of the song,
“Breath…see it, feel it, enter the door of time together, we’re back.”

And then the song started from the beginning. Listening to the guys in my head and remembering the loose translations got me through the treatment. I kept breathing. I wasn’t alone, I had God, the doctor, and four students around me and we were in a very bright room. The doctor was giving me the last shot when the song ended.

I still listen to this song when I need encouragement. This is defiantly not a religious song or about being sick, but the song encourages me to seek God or the person I need to get through the moment. If I don’t try to meet my needs as sick person it’s foolish. Keeping relationships are hard especially when we are prone to seek our safe place. One thing we can do is to keep the door open. These people can help us do that by sharing happy memories, reminding us of times where we had fun despite the pain or of good times. The song also taught me another coping method. I can, with difficulties, let these memories of physical pain crumble, scatter, and fly away. In time I will feel alive for a few minutes again. Take time to feel myself breathing. Keep praying on shooting stars. That is how I can breath knowing I have to do it all over again.


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MHAM 10: My Dog Karma

MHAM Day 10 Topic: How does your pet help you manage #Migraine or #Headache?

Message_1495832585154This is Karma. She loves walks, sitting on the porch, digging, treats, and being petted. Sometimes she gets hyper focused on one family member. Usually that family member is not doing well physically or emotionally. Karma will stay by their side, guard their doorway, and put her head or paw on their leg. Sometimes she talks to them. And she mopes. Ask her “Do you need?” and she will stare at the person or the person’s room.

She tends to know where I am all the time. “Karma, where is Crystal” or “Karma, find Crystal.” She will run back and forth between me and the person looking for me until Karma is satisfied the person found me. Sometimes Karma says “hey come see Crystal.” There was a day I fell and could not get up I was so dizzy. Karma lay down and stared at me for over an hour not moving. Karma herd the car pull up, ran to the front door, and started barking. I herd the door open then Karma’s paws sprinting down the hallway. She paused in the doorway. Mom had not gotten the hint. She sprinted off. She came and went two more times. The third time she barked at Mom. Then Mom came and the “Crap Crystal is sick” routine commenced. Since then we taught Karma everyone’s name who lives in the house.

Other phrases Karma learned was “Name, doesn’t feel good” and “Go to, name.” Both phrases result in Karma finding the person and giving them loving or begging for attention. Having Karma to pet is soothing. I don’t know what it is about simply running my hand through her fur. Another thing is I can match her breaths to get into my breathing exercises if the pain is so bad I’m having trouble. She can be a confidant. I can tell Karma anything and know she will not treat me differently. “Karma it hurts to much.” She will still ask me to throw her rope and give her treats. Another funny thing Karma does is smile when she is petted (I read that is backwards, dogs usually smile to get petted). It’s feels the same as making someone smile. A little positive emotion boost when the pain is a killer is nice. 6a00d8341ce97953ef01b8d28550f8970c-pi

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MHAM9: Pain/Migraine/Epilepsy and Treatment Dilemmas


Prompt: Describe a treatment dilemma you have experienced with #Migraine or #Headache and other comorbid health problems.

The term “comorbid” means that a person has one or more conditions in addition to their primary disease or disorder. According to my chart, my primary condition is epilepsy and my secondary conditions are persistent head pain and chronic migraine.

Medicine used for epilepsy and daily pain medicine are the same medicines. Every new treatment we try seriously impacts how my medicine works. My doctor basically told me we had to focus on the seizures before we could do anything about the pain and we might treat the pain along the way if we are lucky. Six months latter he felt we made enough progress to add a medicine he thought would help with the pain. For the next several years we added, increased, decreased, and went off medicine for the pain depending on how it effected the medicine that has my seizures at bay.

Physical activity has been weird for me. What I am capable to do in a day would change drastically. I couldn’t workout when no one else was home. Even in small amounts working out can be damaging. I will get physically sick, a migraine, or even seize. But while on other medicine combinations moderate to light workout routines were beneficial; improved my balance, sleep quality, and energy levels. It is very frustrating. I noticed the Botox makes me very tired. Topomax made me sick and even seize once to workout last time I was on it but I haven’t chanced it in this combination of m6a00d8341ce97953ef01b8d28550f8970c-piedicine yet.

Diet has been a homeopathic treatment I have tried off and on. My diet also has to change depending on what medicine I am on. I was on a strict brain food friendly diet with low sugar for a long time. It helped with the seizures and migraine symptoms. But when I started the Lamtical I started to shake and become emotionally unstable when I didn’t get enough sugar in my diet. A while back I was on a high protein and fruits diet, lower carbs diet, two meals a day with two snacks. I didn’t go on it on purpose it just happened slowly and I was more functional on that diet. But when I was taken off one of my medicines that diet made me sick. Now I eat what I see. It has been an interesting roller coaster.

The weirdest treatment breakthrough we had was when I started Botox. It has helped my migraines significantly. I had daily migraines and now I have about four migraine days a week. What is more amazing is that I have had one seizure since I started the Botox. I think I’ve been getting it three years.

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