#paintrails Support Groups

Support groups are groups of people who gather because they have something specific that they have gone through. Like chronic pain, depression, caregiving, mental health or other medical conditions. The group make an environment where people can share personal experiences and feelings, coping strategies, or firsthand information about diseases or treatments. It is bridge between medical and emotional needs. There are some pros and cons of groups https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655 is a good resource.

There is no groups near me. So I joined support groups online. MyMigraineTeam.com for my migraines is the best. I read the messages that others post and sometimes I’ll make a post or answer a question. I like that the MyMraineTeam lets you send hugs and its starts each post with a bad/so so/good day. The site also has a place to ask questions and the other users give answers and suggestions. It gives information about hot topics like Botox, Daith earrings, how to take medication and lots more. You get to share with people all over the world but you don’t get personal contact with anyone. It doesn’t elevate loneness.

I also follow a chronic pain prayer group on Facebook, and a Facebook group for schizophrenia. These I just read. Its a lot of people complaining and asking for advise on meds or treatment or I’m stopping my meds. I’m not a doctor is how I feel with the schizophrenia group. The chronic pain prayer group, the majority has MS I’m a little out of place.

#paintrails conditions cause another

People with one chronic illness is usually paired with another.

I have epilepsy. I would fall down a lot. I fell without hurting myself for several years. A few years ago that all changed. My medicine is finally where it needed to be and I don’t fall very often. I fell wrong on hardwood floor. I hurt my lower back. Now I experience lower back pain daily. It can make it difficult to walk sometimes. But its minor most of the time. I go to the Chiropractor to treat it.

I have chronic migraines that can make me scream in pain. When the pain gets to painful I get depressed. The more depressed I get the louder the voices are. Its hard keeping my pain levels down. I have to be aware of what I eat, drink, and I have to manage the noises I hear.

#paintrials Drugfree relief

I do practice some drugfree tools to manage my pain. When I first started having migraines I went to a councilor and we worked on ways to manage my pain without drugs. We worked on controlled breathing, movement, meditation, and therapy. Later in life I also did art therapy, acupuncture, physical therapy, chiropractic therapy.

Controlled breath is being aware of my how air goes into my body and controlling it. I take a deep breath counting to five, filling my whole body with air. I start to breath out in five counts. It helps. It diverts my attention because I am very focused on my breathing and its relaxing.

We worked on moving my limbs and muscles to relax. I lie down and contract and relax my muscles. I do stretches. Later in life I found yoga a nice way to stretch out and relax.

I learned how to meditate. I lie down and focus on God or pray. I often fall asleep and sleep is hard.

Therapy is important to my mental health. The more pain I’m in the more depressed I get. I need someone there to talk to about anything.

Art therapy is fun. When it hurts but I’m not sensitive to light I paint, draw, collage, emborder, and other things I get my hands on. It helps me express my pain.

Acupuncture was a nightmare. I am scared of needles. My Dad wanted my to try it. I couldn’t relax. It didn’t help me.

I hurt my back. I don’t use medicine to control the pain. I went to physical therapy as long as my insurance would cover it. I did the works out at home. I’m not very faithful. I go to the chiropractor. The therapy helps a lot.

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/

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.

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.

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/)

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.

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.

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.

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.