I’m packing to go to our first family reunion of the summer. I’m packing my coping materials and I realize I have no idea how to break it to my family that a doctor diagnosed me as crazy person. I am as ‘the family crazy’ as it gets. We haven’t told anyone on this side of the family about the last 6 months. I have not been in a making phone calls and sharing mood. If I have a melt down an explanation is going to have to be made. “Oh, well. Hanging in there. On top of my pain and epilepsy troubles, now I hear voices, I’m psychotic, have clinical depression, anxiety, and a serious fear of knives. How have you been?” Yup. That about covers it.
Tag Archives: family
Sometimes we need help.
We are social beings. Our brains are hardwired to need people. We need family, friends, clergy, and loved ones. We need people in our lives that can build us up and people who can lift our spirits.
We also need to distance ourselves from toxic people. These people tell us lies about our illnesses, the people who care about us, and about our character. Toxic people tare us down and make us feel sad, lonely, unloved, and like we are burdens to the people we loves. These are all lies.
The people who love us do not see us as burdens. We are loved. We are strong. We inspire people. We build people up. We teach others about perseverance. We are doing the best we can. We are people doing something extraordinary. We function while suffering, we are doing the impossible. The people who love us see an exceptional person.
Sometimes we need help. We need to reach out to those who support us. Our family, friends, loved ones, support groups, and others going through what you are. And sometimes we need to reach out to psychologists, talk therapy, the E.R. The E.R. will admit you to the psychiatric ward and that’s OK. If you are psychotic, very depressed, or having suicidal thoughts it is where you need to be. Personal care is important. Part of that is reaching out for help from whomever you feel/think will give you the bests help or advice.
Sometimes you need help and that is normal. It’s okay. Take care of yourself.
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 type 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
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$.
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.
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.
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.
- I didn’t sleep last night because it hurts to much.
- My niece allowed me a two hour nap
- My niece and I made birthday cards for my Mom
- I was well enough to use the oven to make dinner
- My niece trashed my room.
- Niece did not spill glue on the carpet
- We watched The Ewoks Battle for Endor movie with her mommy
- I learned a new way to lace my converse shoes and they fit nicer
- I hurt way to much for babysitting today
- I started a pineapple crocheted scarf that is super cute
- 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.
- Karma came to cuddle for a few minutes. She usually only cuddles with my little sis.
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.
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.
“What time is it?” is not a simple question in Winamac Indian. My phone didn’t know what time it was. The time zone splits my Aunt’s farm in half. The main house sits on “fast time” (Eastern) and the guest house sits on “slow time” (Central). I stayed in the guest house. My alarm for my medicine goes off and I take it. We goof off for about an hour and decide to move to the guest house. My medicine alarm goes off.
The Peanut Gallery: Isn’t that your medicine alarm…did you take it…why did it go off again…did it actually go off earlier..should ya take it..lets count…I’m going to shower now…how much did you bring I don’t want to count a lot…is your alarm going to confuse us everyday… ug…lets just go to sleep…no its going to confuse us twice a day…ug why wasn’t anyone paying attention…has anyone asked her yet…where is she…we should make a plan…MOM!
Mom: My name is no longer Mom.
Sis: Oh Royal One, what should we do about Crystal’s medicine?
Mom: She should take it when she usually takes it 10 am and 10 pm
Me: Oh Royal One, is the usual time fast time or slow time?
Mom: You figure it out.
Sis not taking a shower: Do you remember if Crystal took her medicine when the alarm went off at fast time?
Mom: I wasn’t there. You didn’t bring your pill box? Go count. The Royal One is going to sleep.
My phone was very confused. By the end of the trip it asked me to manually set the time. The lesson learned is sometimes a watch is much preferable to a device that changes with the times. And take your pill calendar.
I play Words With Friends. My sister asked me if I played earlier:
Little Sis: These are crap letters.
Sis: Do you have the Words App?
Me: Why yes I do…I feel it a great way to exchange words with people. Even strangers since they added the play with random people feature.
Sis: Oh, so you use it to talk with people with the chat and keep connected with friends as a social media.
Me: It is a great avenue to exchange words.
Sis: That’s great!
Little Sis: It is a great place to exchange words…like Qintar. She breaks out in laughter.
Sis: Oh, playing scrabble together is not communicating or being social. I should call your doctor, tell him you live in a box and don’t talk to anyone!
We did pay for our tease, a five minute lecture on the importance on keeping me connected with friends and family. Now I think she is stalking my Facebook and finding out my last status update (I wrote something not posted or re-posted) was July 22 but before that is was the beginning of May. And I lost the website address to the online pain support group. I’m looking for it. I might be in trouble tomorrow.
I often see “everyone remembers exactly when the pain began.” What they were doing, day, minute, even to the second.
But do you remember the day when the seriousness of what was happening hit you? A moment of clarity. When you realized you were screwed over by your own body?
That moment is clearer to me then the day the pain began. Which is understandable I suppose because the pain made me pass out.
I have a twin brother. We did everything together growing up, almost inseparable. I was the crazy imaginative irrational rascal and he the stoic rational calm brat. We made a great team. When something was amiss Mom and Dad automatically yelled for the “twins”.
Collage and the Air Force separated us for the first time. I had been trying to call my brother since my first seizure with no avail (time zones, phone tag), so a week later I e-mailed my brother the details of my adventures and warned him that I needed to speak with him the evening of my first neurologist appointment and to call me with no regards to the time. The appointment did not go well.
Brother demanded a full account of my pain and why he wasn’t told the seriousness of it. He sounded angry, he never sounded angry. He was talking fast and rambling a little. That is what I do when I get emotional. He has a facial expression and a slight tone, not a slightly raised voice and short pauses. I hadn’t even told him how awful the appointment had gone yet. When the time came that he paused for that account I was surprised by my calm tone and reassurances that we had a game plan. It would not do. I needed to transfer to university down the road and live with him. He needed to care for me. Suddenly I am reminding him that he was awaiting orders to ship out. That the plan is irrational. For the first time my brother said something irrational and had deviated from his calm air. For the first time I told my brother no without being persuaded or reaching a compromise. (If he was not awaiting orders I would have transferred.)
My brother was scared and at a loss of what to do. It scared me. It made everything that was happening sink in. I realized that my internal dialog was referring to myself in third person. I wasn’t going through this, it was “Crystal” from “The story of her life.” I was confused, why did my brother just behave so? Why do did we to go against our characters? I wanted to go but couldn’t, he should have said that. It was the first battle lost to my illness. I realized my illness is forcing my relationships to change. The illness had taken a few things away, this made me acutely aware of them. That brought it all together. The reality, seriousness, gravity, life changing tragedy that has darkened the doorstep of my family. This moment was worse then the moment the pain started. The wave of emotions set off a migraine and I cried myself to sleep.
To give you an idea, I remember him loosing his calm and treat me this way only once before. I almost drowned while white water rafting when I was about 8 years old. He pulled me out of the water and when I woke up he was rebuking me. I did not respond with rationality. I saw I lost my oar, afraid of getting in trouble, I tried to go back into the water to retrieve it.
If Grandpa wasn’t standing there. If he had seen. If my surroundings had not suddenly collapsed. Or if we were not surrounded by family she was meeting for the first time. I would have given my step-grandmother, the retired nurse, a piece of my mind.
She just wanted to see me smile, she didn’t know any better. Yeah, right, the nurse had no idea.
I experience allodynia all the time. It gives me extra little bursts of pain when I am touched. Usually it only presents on my head and face. She knows this, I told her the first time she patted my head like a good little child and the time she laid hands on me to pray. I wish she didn’t have the psychological need to touch people.
The family re-union began early Sunday morning with a church and memorial service (we remember all who have died since we gathered last). It was a nice service, Mom gave a good sermon, distant cousin did the memorial, and we sang/prayed. So, typical noise and light trigger fest that I was expecting. In-between the service and family meal, step-grandmother slinks over and bends over the pew in front of me. She grabbed my face and started patting it and squishes it together a little. Then she kept patting my cheek as she patted the bottom of my chin. I think my brain began playing a bit of impromptu soccer.
I must be really good or she sees what she wants to. Somewhere a thought boomed, smile idiot or every single person here is going to know you feel like crap and why because she will announce it to the 100+ people here. It was just me there, my keeper of the day was in the bathroom. To my luck she says I love it when you smile..and then asked for my Mom. She did it to make me SMILE. I had to hurry and get myself back into check before I started to cry or the before extended family noticed.
I learned pained face can look like a smile. I can’t figure out why she would have stopped otherwise.
Smiling is something I practice. When I look into the mirror I try while looking at an old photo and get frustrated with myself. I watch comedies, read the funnies, and keep up with things I am suppose to laugh at. I practice. Smiling is a skill that healthy people take for granted, I did. I was that annoying person who smiled for no reason. I was often told I smiled too much or was too happy. I giggled and laughed easily. But now it’s hard. I can feel the vibrations of laughter in my skull. Giggling is tiring. Smiling is hard when your physical pain is so consuming. I was in acting before I got sick. So I can smile while engaged with someone, it takes effort but the smile can look natural. When engaged with someone I can even get distracted enough to make small smiles and soft laughter naturally. I have learned to laugh silently. My niece gets a kick out of it. It all takes practice and concentration. It might sound silly, but part of me is afraid that I will forget how to express happiness so I practice.
It is almost an insult to be told to smile. It is unkind to make someone feel like their best efforts to function in an hostile environment is not good enough. Especially by someone who knows why the environment is hostile. It is unfair to have to hold all the things you want to tell the jerk in because of what others think are okay excuses, her age, family status, grandpa, her feelings, she probably doesn’t remember, trying to show they care.
My real grandma taught me that it is more important that I go to these things then to put on a happy face or even interact with anyone. It is about effort and showing that I care. She said that I should pick the most comfortable spot and if anyone wanted to see me they could come to me. She would say that anyone who did not appreciate the effort of showing up wasn’t worth my time. Now, they didn’t have to come see me to appreciate my effort, they just had to respect the fact that I am a disabled person who needs control over my environment and can become overwhelmed by crowds. I am making a statement to you by being here. I am giving up all my spoons to be here. It might might end up taking everything I can muster today, but I wanted to be here. Grandma also said its okay not to go, don’t try to give out spoons you don’t have. It is like stealing, only jail is the hospital. When you don’t go it is their responsibility to show caring: we missed you, take care, there will be another time, do you need.
I do not understand step-grandmother. All she had to do to see me smile was to engage me in conversation. She does something uncaring every time I see her. I am told it’s because she cares. She violated the spoons. Grandma took years to teach my extended family a way to be around me without being awkward or fearful. Step-grandmother is announcing that I don’t meet her requirements, I do not cope with my illness well enough, I cannot function well enough to be presented in society. The time before she actually said that I am still sick because my mom, gramma, and deceased grandma did not care for me well enough. I find it ironic that in my immediate family I’m the nicest and most tolerant, so before we met her I was chosen to create that bridge of acceptance into the family for her.
I have not been patted on the cheek since I was a child. Grandma did it saying I was a cute rascal. When being treated like a five-year-old I really want to act like one. Five-year-olds are allowed to cry, be crabby, and whine when it hurts. They can tell people off and be the worse brat imaginable because of a boo-boo. Makes me want to be 5.