Category Archives: pain

Aphasia at the Neurologist

One of my fears has been that I would experience aphasia during a neurology  appointment. It is the most frustrating thing that can happen in the doctor’s office. Here I am staring at my doctor unable to communicate. All I could do was cry. My mind completely blank. What was going on around me didn’t even feel real. After long pauses I could usually come up with a short response. But it may have been gibberish. My Mom said I looked awful and decided to come into the exam room with me, after a few questions the doctor asked if he could talk to Mom instead.

He ordered pain shots. To receive them the nurse needed my birthday. Yeah, I could only stare at her and cry. After an awkward pause Mom inquired if she is allowed answer for me. She is. Thankfully, I got my shots.

The doctor and nurses were all very supportive. The nurse caught on to what was happening pretty quickly and informed the doctor. The nurse told me to cry as much as I wanted. The doctor was patient with me, asked if we understood aphasia, and ordered the shots before we talked so they would be ready asap.

After I woke from a long sleep I felt awful about how the whole morning went down. I cried to my sister about how I didn’t go to the doctor for shots and I missed out on being able to really talk to the doctor. It made me feel like a drug seeker although no one treated me like one. I’ve never sought out drugs. That stigma stopped me from being able to seek treatment for years and now it makes me feel awful about myself every time I take or am given a pain medicine.

Aphasia is always frustrating. Getting attacked by it in the exam room was just as awful as I imagined it would be.

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The Daith Craze, I asked the Doctor

Family members have been driving me crazy pressuring me to get my daith pierced.

I Researched It

The daith has three dots on it. The piercing is a 89ac955a85a83648088f335123207376type of acupuncture, the Chinese philosophy of medicine that balances your Chi. The idea is that it hits the pressure points in your ear that help with pain, “point zero.” It balances your energy and brings your body back into oneness. That is why is helps with pain, hormones, and viscera. The piercing misses that pressure point. The red dots is where the piercing goes and the green dot on the daith is where the point zero is. Furthermore you would have to get specific earning and most don’t. Acupuncturists write its not worth it. If the person piercing you got the right spot it would probably work just a few weeks at best. And keep in mind the body jeweler is not a doctor or acupuncturist. I have also read that it is not acupuncture. It gets confused as acupuncture because of its location and it uses pressure to relieve pain. I tried acupuncture. I am not an expert, but it seems that if you strip away the religious components of acupuncture what you have left is relaxation, pressure, and location.

Then there is the aftercare. 6 months to heal, high risk of infection, and possible bad reactions.

A few links from different types of authors:
Body Jeweler: http://www.urbanbodyjewelry.com/blog/the-truth-about-daith-piercing/
A study: http://www.blog.migrainepal.com/blog/daith-piercing-results-for-migraine
Blogger: http://www.blog.migrainepal.com/blog/daith-piercing-results-for-migraine
Acupuncturist: http://www.blog.migrainepal.com/blog/daith-piercing-results-for-migraine
Acupuncture Academic, about the points: http://www.blog.migrainepal.com/blog/daith-piercing-results-for-migraine

What My Doctor Said

I had Botox today and so asked my pain doctor about the daith piercing. My doctor is a friendly guy with a good bedside manor. When I ask a question its all business and he takes me very seriously. I’ve never felt silly while asking a question, even when I thought it was something “duh” or stupid.

I asked “My siblings are bugging me to get a daith piercing. Have you herd any science for it?”

He laughed. Covered his face, looked at floor, and chuckled at the word “science.”

This is what he said after a moment. He has 15 patients who got the piercing. About half felt that they helped. A few were very pleased with it. One got both ears done. The other half it didn’t work, one it made it worse. He told me that if I want to try, I could because of the chance that I might like it. He would recommend going to a professional. So it would be expensive, about 80$.

Me?
I’m not that trendy. I trust my doctors. Last time my doctor didn’t say yes that might help, it didn’t help. It was a waist of time and money. There is no medical research to back it up and acupuncturists don’t stand by it. I am not trying it.

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MHAM 16: The Struggle is Real

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

stigma

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

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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.

Check out for other entries http://www.migraine.ninja/2017/06/education-needed-to-combat-migraine-and-headache-stigma.html

 

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Surrealism

The last two months have been surreal. Days meshed together and I lost all sense of time. I stare out into space. My train of thought wanders and meanders. The pain jumps in like it feels left out of the conversation. The pain keeps steering the conversation, “remember the time…Oh, those were good times.”

Juxtapositions

Photophobia. The fear of light, the condition where light hurts your eyes, also known as light sensitivity. Severity ranges from minor to medical emergency. When I asked my doctor about what happened is was very logical and made perfect sense. It is a type of light sensitivity. Nothing new. It was all calm and rational. Adequate answers for a realist like me.

But this is not what happened. That night was everything but calm. I was screaming and terrified. The light hurt and I was positive Light was doing it on purpose and it was out to get me. Light was torturing me. I couldn’t hide. My eyes were creating light and Light was penetrating everything I tried to use to cover them. I was screaming. I couldn’t stop. I was in excruciating pain and was terrified. At the same time I was thinking “stop it, it’s light, light doesn’t work that way. This is ridiculous. Act your age. Light is good. Crops need light to grow. Light helps depression. Our body needs vitiam D which we get from light.  Color is a reflection of light. Creates energy.” “God help me.” And I prayed during the brief moments of quiet. But mostly irrational screams.

Nonsequitur 

Going along on a normal level pain day when all the sudden the nonsequitur from pain. “Are you ready to order?” Pain: “Remeber the first time I sent you to the ER?” Me: “Plus, I should spike a manhunting pan sweat podio flies. Peas.” Another time. Mom: “I went to the doctor.” Pain: “Give me chocolate peasant.” Me: “Cousin dinosaurs?”

Internal dialogues and conversations are not safe from the nonsequiturs. I will be in Sunday School and all the sudden pain will step in “Give me chocolate peasant.” The train of thought gone and I go on with something completely different without noticing. I will be thinking about something like how I should change a bulletin board. Pain will sneak in, “Isn’t nice taking naps on the bathroom floor? Want to do it again?” Now I’m thinking about how scary phonophobia could be. Thanks pain, completely lost my concept.

Surprise! 

Pain leaves little surprises all over the place. A day without some type of twist would be a surprise in itself. Sometimes good surprises and sometimes awful and sometimes downright spiteful. Photophobia was a surprise. Realizing how much I have been agreeing with Pain was a surprise. Yesterday’s surprise was that the pain allowed me to function for the six hours we spent celebrating Christmas. How loud my ears are ringing and it made everything else even louder is today’s surprise. Daily surprise parties get old.

Sureal 

I think it is safe to say it has been a surreal time. Surreal art depicting pain is useful to us because it is a way to see how the artist experiences, expresses and even copes with their pain.

 

 

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Down the Rabbit Hole

It’s been almost 3 weeks since my last post. That is how many days I was falling down the rabbit holasian-korean-disney-remake-illustration-na-young-wu-7e. I don’t think I experienced Alice in Wonderland Syndrome, it only refers to feeling that things are smaller and bigger, like when Alice eats. I am comparing my awful last 20 odd days to the things Alice experienced down the rabbit hole: no control, alone, no idea where she is going or how long it will take, its dark, thinking about weird stuff, there is nothing to do. Finally a break, she has to hurry after the White Rabbit before she gets lost in the next long dark passage. The Walt Disney presentation of Alice falling includes more symptoms These are things I felt at some point, not all of them in one day but a few.

  • I have not known my up from down for days straight.
  • I was on a roller coaster that turned upside down, sent you flying, and did curlicues.
  • I was on a skate board rolling back and forth: bouncing off of springs to bash my head on a wall then sliding back to do it again.
  • I was convinced if anyone touched me I was going to explode. I fell and laying on the floor I started screaming that at everyone and the dog.
  • I was doing somersaults
  • Played on a Pogo stick
  • jumped on a trampling while sitting on one of those balls with a handle
  • My bed was rocking, like a swing. I held on for dear life.
  • The table and chairs moved, all on there own.
  • I was there, but I wasn’t. maybe like watching myself on TV what you are doing while I’m doing it? Is that really right there? So I have to touch it just to be sure.
  • Someone was pulling my hair. I think the boogie man was the culprit.
  • The pain had personalities of their own and they were having a party.
    • Over on the right side of the tracks: DJ Ring scratches some records. “Tingle would you like to this dance?” “Oh why yes Pressure.” “Oh there you go Pressure, using Duress to get the ladies!” “Take this out back!” Miss Ache chimed in.
  • Water. Falling water? Keep that stuff to yourself sunshine.
  • and sunshine. Could not stand any amount of light. It was to bright. At the worst of it was afraid of the light.
  • Hey Mom, there is more of you to love! Because there are three of you!
  • Overly emotional
  • Weird sleep.
    Sometimes I couldn’t sleep at all, like for three days at a time. Then I would sleep for a whole day with little 15 minute breaks every few hours.
  • I threw up about everything I ate. I was saltine and water girl. My Mom was excited when I asked for rice. I lived on the bathroom floor. Really, I had a pillow and blanket.
  • My depth perception was awful at times
  • I started telling jokes. What did the floor say to migrainer? I’ll always be there for you. All of my senses were screaming at me for no reason. It made me very sad.

Slowly, impatiently, frightfully, and clumsily is how I went. Somehow I have gone plop for a brief moment. We will see how long my simple ache holds on.

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PAM16:24 Ribbon Art, Hercules

Keep your Mind Busy: Find quiet time and keep your mind busy. Share color pages.
I decided to finish up and share my Disney pain awareness ribbon.

meg-madalen

Pain awareness, purple ribbon, Hercules, Hercules’ medallion, and Meg’s quote “I’m damsel, I’m in distress, I can handle this. Have a nice day.”

Hercules is a story of self discovery. Hercules is physically different then everyone around him and it makes him a social outcast. He wants to be just like everyone else so he can feel like he can belong. At first by wishing he could rid himself of his physical strength then by learning how to use his strength in order to gain fame and access into a community of people just like him. But he learns that both options are not the true answer to finding where he belongs. He belongs where he receives the most love and support from the people he loves. This is why I chose the medallion. The medallion was a symbol and reminder to Hercules of his goal, why he was fighting. Later the importance and meaning of the medallion changed. His physical condition was no longer a source of isolation and depression because he accepted who he was and learned that he did belong. We go through a similar journey. We have to accept our physical conditions and figure out where we receive the most love and support. We also have to learn what “support” looks like and means. We are also fighting and sometimes need reminded to pull it together because “this is the big leagues.”

Meg is also on a journey of self discovery. She learns that she needs someone to lean on and that not all people are petty and cruel. I chose Meg because she has mastered hiding her pain behind an attitude. I think this line defines the standard “I’m fine” answer. “I’m a damsel” is admitting that she is alone in her situation. “I’m in distress” defines the situation, I’m suffering, in pain, and stressed over it. “I can handle this,” I’m annoyed and I’ve learned how to manage my pain/current distress level. “Have a nice day” please drop it I really don’t want to explain myself, if you can’t go away. I think it can be inspirational because it acknowledges the stress and how difficult it is to answer a question like “how are you doing?” or trying to convince someone that you don’t want their help. You are not alone in the emotional roller coaster health related communication can cause. You are not the only person who redefines phrases or tells white lies about how your feeling to make relationships easier.

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PAM16: 12 Online Communities

Check out Heroes of Healing. Connect with others enduring the same obstacles, adversities and challenges. It is a non-judgmental, forum-based site for caregivers and those with pain to share personal stories of struggle, perseverance and triumph.

Could you imagine a migraine support group? No one would be there consistently. That is why online support groups are a great resource. Understanding, encouragement, support are at our fingertips. And its from people who are going through the same or similar hardships and accomplishments. I have tried out two. They have similar features but also some that are unique.

  • Heroes of Healing: (http://www.heroesofhealing.com) It has personal story blogs, forums, and discussion boards. It is a good place to connect with other pain warriors. There is a calendar to post events to help connect with people in person.
  •  My Chronic Pain Team: (https://www.mychronicpainteam.com) You create a support group, a team. There is an activity page, post statuses. Pin board and a resource page. And then there is a q/a page that is like a forum.

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PAM16:6 Let Music Resonate

Music stimulates the brain. Pleasing music releases endorphins that relieve pain. Music can also be a way to distract a person from pain. It gives a person something to concentrate on. I think music is a coping tool that is readily available and valuable.

Music therapists can use music in a variety of ways to help a patient battle pain. The therapists can help a person learn to cope and express their pain through creative expression or a more passive setting through discussion and meditation while listening. Thinking about taking music therapy on? Check this out (http://www.musictherapy.org/)

I use music as a coping mechanism everyday. A few years ago my Dad read that listening to music for half an hour helps pain patients fall asleep. Ever since I have been listening to music every night before I fall asleep. I’m listening my “soft” list right now, it mostly has ballads from boy bands that are in the lower tones and slower. Most of the song are in Korean. It gives me something to do during those episodes where listening to music is about all that I can handle. I can listen for words that I know the meaning to, pick out individual sentences, and focus on how words are pronounced.

A sound track I like listening to on bad pain days is the “Gu Family Book OST” Lee Sung Gi is one of my favorites for bad days.

 

 

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PAM16:4 Knowledge Is Power

Knowledge can empower pain warriors during moments of uncertainty, break-through pain episodes and loneliness. Check out (http://learnaboutyourpain.com/)

When I told my neurologist about my visual symptoms he used them as a sure fire sign that I had caught the crazies. He told me to draw what I was seeing and sent me to a psychologist. All I could find was a broken black crayon and a borrowed sketch book. Black and white sketches are another sign of the crazies. In pain, terrified, and ignorance were all strikes against me. The only medical shows I had watched was “MASH 4077th” and “Patch Adams.” I was screwed.

Migraine or headache disorder did not cross the mind of two neurologists. I didn’t know there were real head pain disorders until my third neurologist diagnosed me with “intractable head pain.” It is important to understand pain. It is okay not to understand it, doctors don’t understand pain. There has not been a whole lot of research done on pain. Pain doesn’t get the funding it deserves. Its an contradiction we have to deal with. It can be annoying going to a doctor and knowing more about your condition then the doctor. I often tell family doctors, “Yes, the neurologists and I are positive it is not just allergies.”

Knowledge is comforting and helps deal. It also helps the doctor help you. Knowledge about your condition helps you notice things or put names to things you didn’t know how to describe to your doctor. It also helps you talk to normal people. I can back up the words “I am not crazy.” I like reading the same information posted by different people sometimes. It can show how the different people experience or express the same symptoms in their unique way. It can help find a new way to describe something if the way you are describing something is getting you nowhere. For example, the only way I could think to describe vertigo was to ask if I was sitting down or disequilibrium by asking if I was falling.

The US Pain Foundation set up a sister site to help people learn about pain conditions. I think they may still be working on it a bit. It is pretty basic information but it is good information. It has links to find out more information about the conditions. It seems pretty easy to use.  It is worth checking out. It has a good trigger list, especially the food triggers, for migraines.

I like learning more about my conditions. I don’t always feel empowered by what I learned. Sometimes news in saddening. It is comfort that there are people producing new information for us to learn from. There are researchers who are interesting in improving our quality of life.

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PAM16:3 Strength in Numbers

 Who is someone you have found inspiring during your pain journey and why?
I thought about this a lot all day because I really don’t understand.

My grandma. She taught me that it is all going to be ok and I’m ok.

My grandma illness worsened about the same time I got sick. She had pain everyday. She  was the only person I knew who had pain everyday. When we went to Wisconsin to visit I started staying at grandma’s house. She gave me lessons in how to behave and take care of myself. Every time the family would go somewhere grandma and I would have discussions about what I was capable of at that moment, that is always the first question, not do I want. She taught me to read my body. What others think doesn’t matter. If someone wants to see you they will come. If you push your body it will knock you down. She taught me how to engage my eyes when they playing tricks on me.

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Me getting sent inside.

She taught me that it is okay to be yourself and its also OK to try to keep yourself but it changes you. She chided me on being the slowest and worst learner God could have sent her. I learned a lot from just watching too. She didn’t smile a lot but didn’t frown or be a sour puss either. I only saw the pain on her face occasionally and briefly. But she also let everyone know that she hurt when she felt like they forgot. If you asked her how she felt she gave a honest ten minute answer. In the past eleven years the place I felt safest was with her. I woke up terrified after each seizure until the day I woke up from one and she was hovering over me. She said “Oh look, there you are, your ok. We got ya. You remember that, your ok kid.” Now when I wake up I remember her saying, your ok kid. She made all of this not so scary and more manageable.

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