Monthly Archives: September 2016

PAM16:23 We Are the Mighty

Stories that inspire through real stories by real people facing real challenges. Having a disability or disease doesn’t have to be isolating. U.S. Pain Foundation partnered with The Mighty to allow pain warriors a safe platform to face their adversity with the pain community. Today’s challenge is to read one featured story from The Mighty and then SHARE it on social media.

“Why the World Shouldn’t View Acceptance of Our Illnesses as Giving Up
By Selena Wilson
https://themighty.com/2016/05/when-acceptance-of-limits-and-life-with-chronic-illness-is-hard/

Leave a comment

Filed under awareness, PAM, reblog

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.

Leave a comment

Filed under pain, PAM

PAM16:21 Let’s have fun!

With so many doctor’s appointments and treatment plans to follow, people with pain have so many decisions to make and serious conversations to hold. Today, let loose and do something silly and fun! Share a picture of your enjoyment, despite your pain condition. Share a picture of today or a day, evening, trip or adventure where you were able to forget about your chronic pain condition for a moment and just have fun!

12728822_10153340604641606_8240581385608420364_n

In the picture is me, two sisters, and my brother. My sister’s boyfriend took the picture. My brother got to come home for my Gramma’s funeral in late February. The day before his flight back to the Netherlands the five of us went out to play. We ate, drove out to Wollersheim Winery, and spent the night playing board games and Wii sports. I had some balance issues that day but it didn’t discourage us. I was passed around as we frolicked about. “Hey, whose got Crystal?” was probably the most said phrase that day. I think during our adventure that we all were able to forget our pain for a while.

Leave a comment

Filed under family, migraine/headache

PAM 16:19 Pediatric Pain Warriors!

I almost didn’t blog today because they used the blog challenge as a fundraiser. I don’t agree with that. But this camp is a good thing they do for kids and it is nice to see kids coping by connecting with other kids like them.

To honor brave young pain warriors, U.S. Pain sponsors a pediatric pain camp at The Center for Courageous Kids. Through our various pediatric centered programs and fundraisers, the organization is able to provide children and families with the chance to attend this unique camp. Learn more by watching this video and consider a donation.
(Donation Link: https://www.uspainfoundation.org/donate/)

Leave a comment

Filed under PAM

PAM16:18 Pain Journey, How did it lead you to become a PAM advocate?

Today’s challenge is to video yourself describing your pain journey and what lead you to advocacy. I think I’m in to much pain to travel that far out of my comfort zone. But I can still share although I don’t think the question is not as simple as it seems.

March 2005 I had my first migraine. It caused me to pass out. Every day following I had a migraine and within a week I was in constant pain. The pain worsened and I still have the same headache. I think it was September 2005 I had my first seizure. The sunlight hit me and it triggered the worse pain I had ever felt and I dropped in front of the library.

When I was in kindergarten it bothered me that I didn’t know God’s plan for my life. One day I decided it must be to make people smile, if its not fun for someone it can’t be within God’s plan for me. All I could see in every bible story was God wanting or finding pleasure or having fun. The only logical conclusion was that is what he wants for his people. It stuck. Everything I did was to that purpose. Even when I caused mischief I did things that made my male parental units laugh. I was a happy person who made others happy just being around me. I was optimistic, gullible, helped others see the good in bad situations, befriended the “wrong” people even though I got bullied because of it. My Grandpa Fred called me Giggle Fritz. My Grandma called me a rascal with good intentions. I was full of jokes and antidotes. I was one of those people others didn’t like because I smiled to much.

Then the pain changed me. I stopped giggling then laughing then smiling. I became someone who had to search for the silver lining. Suddenly I was having to comfort people because I was scaring them and bringing them sadness. It was devastating. My gramma became angry and disappointed in me and called me a failure. For the first time she was glad Grandpa Fred isn’t here to see me like this. I broke my Grandma’s heart. She felt like she failed me because she couldn’t heal me and I was loosing me and all my dreams. My youngest sister doesn’t remember healthy/happy me, she was 4 when it started. I’m not as smart. I hurt all the people I love. Lost the majority of friends my own age. The only thing I could do for my people was to get better, protect them, focus on staying positive, remind myself “I can do this” everyday, practice smiling and laughing, and to never stop trying to accomplish something. I tried my hardest. Then the doctor told me it was impossible to get better, I shouldn’t, I can’t, to not get my hopes up to high,pain management, vigilance, signs of depression, and don’t isolate myself. Everything is in shambles. My eight year old self would be shocked and disappointed. I can hear my Grandpa Fred, “Why so serious Giggle Fritz?”

Something unexpected happened. I broke down in front of Uni and she got angry then sad. I got a talking to. Since I started having seizures random people would tell me the strangest things and ask me “stupid questions” and I blew it off or got angry.  I do what I have to, I can do it, and I’ll show you  (irresponsible me said I do what I want) but that is not what other people see. Uni says I’m useful because I make her laugh and I’m the smartest person she knows. Professors and peers saw a good and determined student. I’ve been called strong, courageous, brave, inspiring, headstrong, insightful, and other adjectives I would never ascribe myself. Questions like “how do you do it” “why haven’t you killed yourself” “how do you smile” and “where is God” are not stupid or intentionally hurtful questions. It is honest curiosity. It is proof I haven’t lost hope or my optimism. That living in Hell doesn’t have to make you miserable or bitter. That even though it looked like I lost my purpose I hadn’t, it looks different. A person can miss or not understand the impact they are having on the lives of the people around them.

I didn’t decide to become an advocate, it just happened gradually. I became an advocate when people start seeing what they think is the impossible being accomplished by someone who answers their questions and does their best to explain what the person is witnessing. I became an advocate for people in pain and people with seizures on accident. I didn’t realize that that was what I was doing. I was just answering annoying questions with patience. Then I realized I could try to educate people who refused to understand the impact of these conditions have on a persons life through Facebook. I read that I had to be an advocate for myself. I tried to explain to people why their preconceived notions are wrong and how their actions do physically and emotionally hurt people.

I started this blog a year ago. I read blogs trying to learn from people in pain. The doctor had a talk with me about isolation and about sharing my health issues with someone. I had a random thought. I could try a blog. If one post helped one person deal, learn, or smile it would be worth it. Then I saw a migraine blog challenge and I ended up here. I had fun with that blog challenge. Every relevant to me awareness season I search for a challenge and that is how I found PAM and became an advocate for PAM last year.

Leave a comment

Filed under migraine/headache, PAM

PAM16:10 Gratitude journaling.

Day 17 is to check http://www.mychronicpainteam.com which I already talked about in “online communities” a few days ago. But I accidentally skipped day 10 and its nice.

Gratitude journaling is an activity designed to help a person become happier and more grateful. Despite your downs their are good things happening. Consider starting a journal or one entry. Write three positive things for every negative moment. Remember to focus on positives that sparked a happy emotion today. The idea is to train yourself to see gratitude-inspiring events and the things happening around us that makes us happy even when it may seem like there is nothing to be happy about. All about improving our mental health.

  1. I didn’t sleep last night because it hurts to much.
    1. My niece allowed me a two hour nap
    2. My niece and I made birthday cards for my Mom
    3. I was well enough to use the oven to make dinner
  2. My niece trashed my room.
    1. Niece did not spill glue on the carpet
    2. We watched The Ewoks Battle for Endor movie with her mommy
    3. I learned a new way to lace my converse shoes and they fit nicer
  3. I hurt way to much for babysitting today
    1. I started a pineapple crocheted scarf that is super cute
    2. My niece’s reaction to the reality of “yes its just you and me today.” She asked how my head was feeling, glared at me, slumped off, and then about an hour latter came back with an activities list she would enjoy that she believed I should be able to handle. She is eight.
    3. Karma came to cuddle for a few minutes. She usually only cuddles with my little sis.

Leave a comment

Filed under family, migraine/headache, PAM

PAM16:13 Tweet Congress

Preserve the rights of others! Patients for Medicare Access is a campaign U.S. Pain Foundation has created to protect the rights of vulnerable seniors and others who depend on Medicare Part B to access necessary treatments for their pain condition. The proposed CMS demo could limit coverage on pain management therapies. Today, we challenge YOU to Tweet Congress to#StopCMSCuts! Visit our campaign page where you can easily engage in finding your Congressmen/women and Tweeting pre-written messages!

http://www.patientsformedicareaccess.org/tweet-congress

I didn’t realize you could tweet congress.

tweet

Leave a comment

Filed under awareness, migraine/headache, PAM

PAM16:15 Finding support through Pain Connection

A program through U.S. Pain, Pain Connection offers support groups to empower people with chronic pain to improve their quality of life, decrease their sense of isolation and take a more active role in their treatment. Founded by Gwenn Herman, a licensed certified clinical social worker whose life turned upside-down after a car accident in 1995, her experience and education offers a wealth of knowledge to the pain patient, providers and caregivers.

Check out their Pain Connection website: www.painconnection.org. Pain Connection offers several good resources and ways to get involved. I think their approach to support groups is creative. They do video conference calls. Its worth a look.

Leave a comment

Filed under migraine/headache, Pain managment, PAM

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.

Leave a comment

Filed under migraine/headache, pain, Pain managment, PAM

PAM16:11 comfort that empower

When you are having a high pain day, what have you found comforting?

  1.  Music: It is proven to decrease pain, increase optimism, speed healing, decrease anxiety, improve mental health, lower heart beat, improve sleep habits, help relaxation, inspire creativity, and other stuff.
  2. My cave: dark, enclosed space, my bed, limited human interaction, safe place to cry and be in a bad mood, can stare out into space…
  3. Cuddling: Cuddling releases oxitocin. It reduced stress, relaxes muscles, and is a pain reducer. I cuddle with my teddy bears, pillow, blankets, and my fav was a boy when I had one.
  4. TV and movies: When I can stand the light I watch but I can’t see to read normally. House MD, Disney, Star Trek, crime shows, fairy tales, MASH 4077th…

A lot of high pain days I don’t even turn on my computer, hence why I’m behind. I can barely think, my balance is crazy, and my vision is all wonky. It takes a lot of my pain management tools out of the list.

Leave a comment

Filed under migraine/headache, Pain managment, PAM