Online Therapy, Acupuncture, & Dogs

… because why not dogs?

I’m seeing my acupuncturist for the second time today. I still have a bruise on my right hand from my first appointment. However, this is common… according to the internet. Thanks, internet, for making me feel better about tiny, painful needles in my skin.

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I also have an appointment with a new therapist. Before I discuss that, I should get into a bit of history about my art therapist. I loved my art therapist. And I was a bad patient. I poofed. I poofed because she made some comments the last few times I saw her with which I wholeheartedly didn’t agree… and it became something of a pattern. I found myself talking about the same issues over and over, instead of doing the work that was in my treatment plan. I didn’t feel that was productive. The last time I went was right before entering a period of emotional crisis. At that point I decided that, for me, I had gotten everything I was going to get from working with her at that time.

I know it’s incredibly wrong to just stop seeing a therapist and not give them closure, however, it is a service for which I was paying, and I have no insurance, and that deal could only last so long. Basically, it became an untenable situation for me in many ways.

Mind you, I haven’t abandoned self-improvement or therapy all together. I have been doing my reading, and creating art, and expressing myself. I have been trying to implement the plans and strategies that came out of art therapy. I use my Girl Cave as a retreat. I’m sleeping much better.

There is turmoil in my personal life which I have agreed not to discuss openly. That doesn’t mean I won’t talk about the suicidal thoughts, or the self harm I have inflicted upon myself, or the frequency with which I have used crisis and suicide hotline resources over the past few months. It is my belief that it is important not to hide these things away, but rather to throw open the curtains and let the damned sun burn the truth of them into us. I am hurting emotionally and physically.

I am not resistant to therapy in the least. I am resistant to unproductive therapy. I am resistant to judgmental therapy.

This is a good point to get into why I have chosen to seek online resources instead of traditional, in-office therapy. There are several websites that provide access to emotional support online. I have utilized the active listeners at 7cupsoftea on a few occasions. I found the group chat to be more useful than the active listeners themselves. It turns out that active listening is not a skill that everyone has naturally. Active listeners are simply people who have completed a web-based training and are volunteering their time.

Then there are the therapy sites that provide access to professional therapists. I have not used these resources before. The two sites that I looked into when I was performing late-night searches, as you do, are TalkSpace and Breakthrough. TalkSpace has been discussed in the media and on numerous talk shows. I found this to be a turn off. There was also some language in their EULA that turned me off. I can’t pinpoint what it is that made me choose Breakthrough, but that’s what I did.

I have an appointment with a Breakthrough therapist at 2 PM EST today. Actually, she’s a clinical social worker who has worked with families and individuals who have suffered trauma. She had the cheapest out-of-pocket rate while not being a Christian nutter.

I can’t see an overly religious therapist because my relationship style and sexual orientation don’t really mesh well with them. I’d rather be able to get those things out of the way and move on to the real work.

What do I consider “real work”?

That’s a tough question, with even tougher answers. I have past traumas, trust issues, PTSD, and some massive codependency to conquer. Doing these things will help me communicate more effectively, love myself more, and manage my health (mental and physical) more compassionately. See? I have goals. I’m clear cut. But I am so easily distracted by the swirling chaos of diagnoses and external stressors that I never get to the meat of the situation.

I’m at the point where I don’t want to gently wade into these traumatic issues. I’m good at self care. I’m good at knowing when I need to stop certain conversations. (Emphasis on “certain”.) I’m ready to deal with the awfulness in which I am mired.

On to the fun things! DOGS! Well, just one dog. I know this popped up on my Instagram feed (follow me on Instagram for dog, makeup, more dog, and occasionally pictures of knickknacks or medical crap. @niansahc ) but I think that a shout out is worth while.

Here’s my baby, Oliver, and my favourite quote about devoted little dogs for your viewing pleasure:

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“We Did The Thing!” – Self Doubt and Self Care

I wrote the title for this blog enthusiastically and with happy tears in my eyes because I have recently experienced something I want to share with the world. Then, I stared at the screen, started typing, hit the backspace key, typed something else, and stared some more. The truth is that I don’t know how to talk about this in an articulate way. I have expressed parts of the feeling to individuals as I have deemed it necessary, but, ultimately, the emotion is too huge to pin down in a few words.

I am, however, going to try. I think it is necessary for me to talk about it as a human. I think it is necessary for me to talk about it as a woman. I think it is necessary for me to talk about it as an individual with autism. I think it is necessary for me to talk about it as an individual with chronic pain. I will do my best, and I will ramble, but I will be as sincere as I damned well can be.

I don’t trust easily. I’ve never had close humans whom I’ve felt I could tell anything to or whom I felt I could call if I needed support. I’ve never felt comfortable asking for help. I have always stringently avoided inconveniencing people. I have kept up appearances as much as I possibly can. I have forever tried my best to deal with me… myself.

Over the past few years, I have learned the importance of self care, the benefits of therapy, and how to speak to myself more positively. I had not learned, though, how to rely on others for support (or trust others to support) until two weeks ago.

I like to consider myself a fully-formed emotional being who is self-aware and capable of doing grown-up things. Unfortunately, life, which is complicated and often ugly, can sometimes smack a person around and you don’t always behave as gracefully as you should. Sometimes you break the fuck down. Sometimes the world ends. Sometimes things are just bad. Sometimes you end up in a parking lot somewhere and you don’t want to exist. Sometimes you are in such personal crisis that everything seems dark and dreary and hopeless.

It was in such a moment that I learned that other people are more than just social outlets. Apparently, and this is still new so bear with me, other people who are not family or in romantic relationships with me are capable of caring about me enough to want to help me. Other people do things like show up in parking lots with water and chocolate and hugs. Other people offer to meet for ice cream just to talk without wanting anything in return. Other people check in to see how things are. Other people offer beds and coffee and make dinner and out-of-season Christmas happen. Other people share their ups and downs and feel happy when they hear about ups and sad when they hear about downs in return.

These other people are called “friends.”

It isn’t as if I haven’t had friends all my life, but I don’t think I’ve allowed myself to have this level of friendship with other people before. I had to reach one of the lowest points in my life to finally be able to look up and see all of the hands being reached down to lift me up. And there were so many hands, and they all glowed with unconditional love and compassion.

This is where typing becomes tricky, for the tears, they are a’flowing. It has been a long thirty-five years of striving to feel accepted and loved for who I am by ME, let alone other people. I am trying very hard to let the love that I feel for humanity extend to myself. I know that I am a lovable, likable person. What I have never really believed or understood was that other people see me this way, and I am overwhelmed by how truly cared for and supported an uplifted I feel. I genuinely hope that other human beings have felt this feeling at some point in their lives. I want this feeling for everyone.

I am spending this week engaging in radical self care to eliminate some of the disquiet of self doubt that eats away at me moment by moment. I know that to move forward in a positive way with my life, my relationship with my self, and my relationship with others… I have to regain some of the self esteem that has been lost to years of pain.

I will leave you with this. One of my lovely friends, with whom I discuss aforementioned ups and downs and with whom I celebrate and commiserate, and I have a saying. It is silly and motivational and it puts our intention into the world:

“We did the thing!”

It means that what ever it is that we want or need to do is already done and we were successful. We aren’t going to do it. It is done. We aren’t doing it presently. It is done. We did the thing. The thing is accomplished. Wipe of the hands. Be it difficult and stressful or fun, we did it.

Whatever you have to do, it is already done. You did the thing. But you aren’t alone…

We did the thing.

Oxcarbazepine, Botox, & The Cefaly- Which is Working?

My pain levels are wonky to be sure. One day I’m a 5 out of 10 on the pain scale, the next three days I’m a solid 9. Then I’ll have a few 6-7 days. What I do know is that this is a vast improvement in the quality of my life over the period between September, 2014 an August 6th, 2015. I am in no way complaining.

However, I would like to know what is making the magic happen. I’ve been using the Cefaly device for a while now. I’ve been on a larger dose of Oxcarbazepine (or Trileptal, used to treat Trigeminal Neuralgia) for several weeks. And I’m right in the sweet spot of my most recent Botox treatment where the Botox flu and droopy-eyes are gone, and it has not yet worn off.

This is the problem with chronic condition. We’re so eager to try everything that we just want to do it all at once, which makes it hard to determine what is actually working. That leads to being on tons of medications and afraid to stop even just one.

ALL OF THE PILLS! ALL OF THE WEIRD TREATMENTS! GIMME!

Really, I’ll do anything to feel less pain, but it sucks not knowing which thing to credit for better days!

Self-Advocacy, Chronic Pain & Comorbid Chronic Depression

I’m not a doctor. I’m not a mental health professional. I’m one of 14.8 million (NIMH) people suffering from a major depressive disorder in the United States and one of 1.5 billion (American Academy of Pain Medicine) people suffering from chronic pain in the world.

As of this very moment, scientists don’t understand exactly why depression and chronic pain are linked, but the comorbidity of these conditions cannot be denied. Because these conditions are often both present in patients, one treatment strategy alone is often ineffective. To deny the mind and spirit when the body aches is like putting a band-aid on a broken arm and telling us to walk it off. However, many medical professionals are just learning that it is important to pay attention to the psychological effects of their patient’s conditions, and the reverse.

Photo: ALAMY

Therefore, I think it is important to have a conversation about what we, as patients, must do to advocate for ourselves. I discuss my doctors an therapists frequently and candidly because there is nothing shameful about being ill or mentally unhealthy. I also discuss them because removing the stigma will hopefully encourage others to seek much needed treatment even when it is not suggested by their general practitioners.

We tend to think of general practitioners as mechanics. They keep the body running and send us out to specialists to have our engines rebuilt when they themselves are not qualified to do so. What is lacking from general practitioners is a total-body approach to our healthcare. It is unfortunate that vision, dental, and mental health have been divided into separate fields. In fact, it is detrimental to those of us who suffer from chronic anything.

Think about the diagnostic process when something goes wrong with our bodies. General practitioners run through the check-lists of tests an procedures with which they are familiar and only then do they begin referring to specialists, eye doctors, and dental practitioners. Notice that I did not say mental healthcare providers in that sentence. They keep the body running, with little consideration for the mind. This is not to say that doctors don’t send their patients to psychiatrists and psychologists. However, when patients are sent, it is rare that the patient will then undergo in-depth counseling to determine root-cause issues. Typically, patients are sent with a list of symptoms they have discussed with their general practitioner, and the mental healthcare professional will prescribe something and manage psychoactive medication from that point.

This is extremely problematic. Although the chemical causes of depression may be treated, it is unlikely the patient will learn much needed coping skills to battle depression. Face it. We’re a society of instant-gratification loving people. We want pills to fix things. We want treatment to fix things. We don’t necessarily want to spend years in counseling learning how to be more functional emotional beings.

Which brings me to pain and depression. The road to diagnosis with chronic pain is a long, long, long, long road full of bumps and monsters and disaster. This process is harmful to the psyche. Between doctors who don’t know, doctors who don’t care, and doctors who mistreat chronic sufferers… patients develop an adverse reaction to the medical profession as a whole. We don’t trust that doctors know what they are doing. We feel like lab rats. And we feel jerked around. To feel pain and to not feel heard is dehumanizing.

Sure, it’s pretty obvious that hurting all the time would lead to depression. But it’s more than just feeling down about limitations. It’s a chemical process that begins to form a feedback loop in the body from which we cannot escape. When doctors don’t identify that this feedback loops is occurring, the only result is a worsening of symptoms.

As chronic pain and chronic depression persist untreated, they worsen. It’s inevitable. So what can we as patients and we as sufferers do for ourselves?

It’s simple… talk and take action.

Research symptoms. Prepare for your appointments. Consider mood as well as physical symptoms. Think of yourself as one whole being and force your doctor to see you as such. Ask questions about side-effects of medications. Talk about sadness, anxiety, crying, feeling alone or trapped with your doctors. Seek out mental healthcare and make sure that all of your healthcare providers are talking to one another. Treat your body and mind as two parts of one machine and get total-body care. Don’t wait for your doctor to tell you what to do. Do it and tell your doctor.

You are one body, mind, and spirit. These three things work in harmony to keep you going every day. I charge you with the care and maintenance of your total body. Demand that your doctor treat you the same way, and if they won’t, find a doctor who will. It is okay to seek proper treatment and it is okay to take your healthcare into your own hands. You are not at the mercy of the medical community. You are completely in charge of your treatment and you deserve the best they can offer.

But they don’t always offer, and you need to be aware of that.

Photo: ALAMY

6 Things Every Chronic Pain Sufferer Wants to Hear

WordItOut-word-cloud-1097862Living with chronic pain takes a major toll on a sufferer’s personal life. Friends, family, and other kinds of social support are vital to the quality of our lives. Cancelled plans, physical limitations, undone chores, and feeling like a guinea pig are all pretty depressing. But the one thing that can instantly make us feel better is compassion from another human being.

If you know someone with chronic pain, there are simple ways to show them that you care and that you are there for them. Here are six things that anyone with chronic pain would love to hear.

  1. “I believe you.” Chronic pain sufferers have weird stuff wrong with our bodies and it hurts. We’re human beings in pain. Having friends and family tell us that they believe us is the most supportive thing we could ever hear.
  2. “Rescheduling is absolutely okay!” When plans have to be cancelled because someone isn’t feeling well, that person feels guilty. Chronic pain sufferers live with an indescribable amount of guilt, and when that pain affects someone else in a negative way, that guilt cranks up to 11. Telling us that it’s okay that we have to reschedule plans makes us feel like our condition has less of an impact on your life.
  3. “Let’s hang out at your place this time.” Bathing, medicating, getting dressed, and attempting to look human are exhausting enough… and then we have to leave the house! Bars, the movies, restaurants, and parties can have elements that make our condition worse. Take the pressure off by planning a quiet evening at our place. Pajamas and movies? YES PLEASE!
  4. “I have some free time this week and I’d like to help you with shopping/ laundry/ cooking/ chores.” Getting things done can be tough when we hurt! Think about a time you had a cold. Did you accomplish much during that time? Chronic pain sufferers face many challenges that can prevent us from doing the most basic of chores. We probably won’t ask for help, but if you’re offering…
  5. “It’s not your fault.” Did I mention our guilt? Many chronic pain sufferers attend therapy to cope with the negative feelings surrounding our conditions. But the feeling that our condition rules our lives, and the lives of those closest to us never really goes away. Reassure us but reminding us that you know we didn’t choose the pain and we don’t deserve the pain. 
  6. “You are not a burden.” Being the friend or family member of someone with chronic pain may mean that you’re pulling double duty in many areas of your life to help us with ours. We know that we’re a lot of work, but we constantly worry that we’re resented. Reminding us that you do things because you love us goes a long way towards helping us feel less like a weight on your shoulders.

Lights Out, MONSTER BRAIN Shirts!

Lights Out, MONSTER BRAIN Tee

You’ve been asking for them, now they’re here! Get the new Lights Out, MONSTER BRAIN tee, tank, or hoodie now available in BLACK. This shirt is dedicated to all of the light-sensitive chronic pain sufferers. But you don’t have to have a neurological condition, migraines, or psychological distress to buy a shirt, this design looks great on everyone!

Support My Brain Hates Me and help my brain hate me less. Get yours today! 

#MyPainFace & #MyInvisiblePain : Two Fun, Easy Ways to Spread Awareness

I’m not having a good week, so I haven’t worn my human mask much. But I did recently share THIS POST about Making Invisible Illness Visible. LonBonLonLon on Tumblr is trying to get the hashtag #MyInvisiblePain to trend, and I’m trying to get #MyPainFace to trend. So I thought I’d do a little of both this morning…

Here is #MyPainFace from this past February, playing in the snow until the brightness got to me.

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And here is #MyInvisiblePain … the things you can’t see going on with me, but I assure you were happening in this picture. I’m not squinting to be cute.

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That’s just from the neck up, really. I left off things like nausea and dizziness because I couldn’t figure out how to illustrate them.

Share your lovely face with the world. Show everyone that people who are suffering can look like everyone else! Tag your photo #MyPainFace on Twitter, Facebook, Tumblr or Instagram!

Or get to doodling, and share your symptoms to help spread awareness of invisible illnesses! Use #MyInvisiblePain on Twitter, Facebook, Tumblr, or Instagram!

And if you’d like to share it with My Brain Hates Me, tag me too! @MyBrainHatesMe on Twitter, Facebook, Tumblr and @niansahc on Instagram!

“How Are You?”

Being asked how I am is a difficult question to answer depending upon the person asking. If it’s an acquaintance, I typically say, “I’m hanging in there,” or “I’m living.” If it’s a closer friend, I might talk about whether I’m having a bad day or a worse day or if I’m feeling down about things.

If it’s my husband or my son, I might outright lie and say I’m fine.

It’s difficult to subject your family to your chronic pain condition day after day. Although I know that it’s not beneficial to anyone to hide my symptoms and try to power through, I also know how heart breaking it is to see how bummed out they are when I’m curled up in pain.

I spend far too much energy trying to act normal for my family so that they will act normal around me, and it’s counter-productive. What I really want is for my family to understand my condition and my medications and my pain levels and see what’s going on with me as a legitimate problem. Instead, this tendency I have to mask it so that they aren’t made uncomfortable blocks me from receiving a lot of the compassion that I need to get through.

Basically, my it’s an emotional nightmare in my home and I feel fully responsible. I know I’m not fully responsible, but I have guilt issues that cloud everything in a haze of, “IT IS YOUR FAULT! DON’T LET OTHERS TAKE RESPONSIBILITY!”

How am I? I hurt. A lot. With the exception of this past Friday, I haven’t been below an 8 on the pain scale in 8 months. I’m tired all of the time, and my new medication makes me go to sleep during the day. I have nightmares when I do sleep and wake up in pain. I dream about my pain. I’m constantly anxious and worried. I’m sad. I’m depressed. I cry daily because I hurt and because I’m tired and because I don’t want to be in pain anymore. I think a lot about how nice it would be to never wake up again. Right now, things are ugly in my house and I am very lonely. I’m trying to arrange time with friends to counter that, but I lack a lot of energy or desire to actually be around people. I feel trapped because it’s become very difficult to drive. I feel trapped because my marriage is strained and I don’t know how to fix it or if it can be fixed. I feel trapped because I spend most of my time in my bedroom.

I know that feeling trapped is a symptom of depression. One-sidedness is a symptom of depression. Everything is a symptom of depression.

How I am is not good. How I am is trying really hard and failing. How I am is distraught.

I talked to my son yesterday about his perception of what I’m going through. He just came back from a road trip with another family and he said it was so weird to do things. They just did stuff, like normal people. We don’t do things as a family. He said they didn’t argue, they just did things and had fun. I told him that sounded nice. He says he understands what’s wrong with me, but that he hopes they find a way to fix me soon so that I don’t have to hurt so much and so that my husband and I will fight less.

It breaks my heart that I can’t give him great family experiences and that the thing he thinks about when he thinks about his family is that his mother is in pain and his parents argue.

How do I make things better? I really have no clue. I keep trying all of the tips and tricks I read about in books and online. I’m so overwhelmed and exhausted and I feel so persona non grata in my own home.

Suicide, Depression, T-Shirts, & Deadly Rashes with My Brain Hates Me

Power of Pain Foundation

Donate to http://powerofpain.org/ or become a delegate yourself by clicking here: http://powerofpain.org/delegates-of-popf/

Suicide & Depression Hotlines

United States Hotlines

Depression Hotline: 1-630-482-9696

Suicide Hotline: 1-800-784-8433 FREE

LifeLine: 1-800-273-8255 FREE

Trevor Project: 1-866-488-7386 FREE

Sexuality Support: 1-800-246-7743 FREE

Eating Disorders Hotline: 1-847-831-3438

Rape and Sexual Assault: 1-800-656-4673 FREE

Grief Support: 1-650-321-5272

Runaway: 1-800-843-5200 FREE, 1-800-843-5678 FREE, 1-800-621-4000 FREE

Exhale: After Abortion Hotline/Pro-Voice: 1-866-439-4253 FREE

National Alliance on Mental Illness www.nami.org

American Foundation for Suicide Prevention www.afsp.org

SAVE www.save.org

International Bipolar Foundation www.ibpf.org

No Stigmas www.nostigmas.org

Active Minds www.activeminds.org

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My Pain Face

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This is my face of chronic pain. This is me wearing makeup. I am smiling. I have bathed. I have a bow in my hair. I am wearing clothing. You won’t see me curled up in a ball or wincing because I don’t want you to see me like that. I don’t want to live in pain, but I do. I am a human being, and pain takes away my humanity. I do everything I can to maintain that humanity by putting on my human mask when I’m around friends and family. I don’t look sick, but I’m in agony. I choose to hide that pain. I feel happiness. I laugh. It does not mean I’m better. #mypainface

What’s the Deal with Reiki?

A good friend of mine recently became attuned in the first level of Reiki and offered me a session. She knows about the amount of pain with which I live. I spent a few hours with her this past Friday and it was interesting and relaxing, and definitely worth sharing with you.

What is Reiki?

Reiki describes both the process a practitioner uses to channel energy through a patient with little to no touch, and the energy itself. According to Reiki.org, Reiki is a kind of life force energy that clears the spiritual pathways of the body and to which practitioners must be attuned. A Reiki Master must train new practitioners to sense and manipulate this specific energy.

Does Reiki Interfere with Current Medical Treatments?

Reiki is about mindfulness and spirit and energy manipulation. It doesn’t affect any medications or treatments or care that you’re currently under. It’s a complimentary treatment. Reiki can be intensely emotional, however, so it is important to listen to the practitioner’s messages before an after your session. The practitioner should make themselves available for any questions. It is not covered by insurance.

The Preliminaries

My practitioner showed up on time, in scrubs, with her hair pulled back in a neat pony tail, with a travel case rolling along behind her. We hadn’t seen on another in a long time, so we embraced and exchanged our hellos and experienced the chaos that is my dog.

I had her set up in my living room. She had a massage table, which she covered with soft blankets and a sheet. She asked me if I had a preference about music that I like to listen to when I relax, and I let her choose something. I’m not picky. Any ambient music will do for me. She used her phone to stream music, and even brought her own speaker.

While she was setting up, she had me fill out paperwork that asked for information about my conditions and current medications and the standard contact information. Then she had a second sheet that she went over with me that covered topics such as what I’d like to address, what was my spiritual life is like, and if there were any other areas on which I’d like her to focus. She then asked if smell bothered me because she occasionally burns sage. Sage is fine for me. Before we concluded the paperwork she stated that she is in training and that she is not supposed to touch me. I granted her permission to place her hands on me because I know her and the session was as much for her to practice her craft as it was to help me. I’m comfortable with her. I merely asked that she be gentle with my head.

What My Reiki Session Was Like

I climbed onto the table and had a pillow under my head as well as under my knees to support my lower back. I closed my eyes and heard her scurry about me. She advised me that I might hear her write things down or turn pages while she worked. She let me know that she would give me quiet forewarning before she did anything so that there were no surprises.

She asked me to think positively and in specific ways. For example, she asked me to think things like, “I am healed,” as opposed to, “I will be healed.” Reiki focuses on the present. She also asked me to avoid mental thoughts like, “I am not in pain.” “Not” is a negative. I replaced that phrase with, “I feel good,” and tried to repeat the phrase over and over during the session.

She opened our session officially with a prayer.

Then the fun began.

I consider myself something of an Episcopagan. I’m a Christian but I was also Wiccan for a decade. I was obsessed with the paranormal and psychic phenomena as a kid and I have always had crystals and paid attention to my instincts. The next thing that happened was peculiar, but not entirely surprising, given the nature of the work she was doing. She asked if sound bothered me. I said that I should be okay. She then rang a chime in different places throughout the room to “raise the vibrations,” and I began to feel extreme pressure between my eyebrows. This is the spot I associate with my Third Eye. It was as if the chimes were waking something up in my body that hadn’t been awake for a very long time.

It was pretty cool.

I heard her warming her hands, which is a sound I’m familiar with from my time with massage and physical therapists. Then I began to feel a different kind of pressure building inside the center of my brain. It was as if something was trying to push its way in, or as if a balloon were inflating in my head. It wasn’t painful, mainly invasive. She then lightly placed her hands over my ears, forehead, and the crown of my head, spending several minutes at each.

After spending most of her time with my head, she then moved down the left side of my body, gently placing her hands at my shoulder and elbow, then elbow and wrist. It continued like this, drawing energy down the left side of my body in the path of my circulation down the left, then back up the right side of my body. She ended by focusing over my torso.

After the Session

When I was ready I moved back to my sofa and we chatted about what she found. She told me that my spiritual side, the left, was fine, but that my right side… the side with all of the yucky things that happen in life, was murky. She said I needed to laugh more. She asked me about some things in my past and present that aren’t common knowledge. All in all she was perceptive, professional, and compassionate.

Is Reiki for You?

Unlike massage and acupuncture and chiropractic treatments, Reiki is non-invasive. It comes from a place of love and compassion and spirituality. You don’t have to believe in it for it to work, but as my friend told me, it helps. The worst that can happen is that you get to relax for a while in a comfortable, quiet place with someone watching over you and wishing you well.

Will I Try It Again?

Yes. I need positive people and forces in my life in different shapes and forms. Spiritual healers who are also my friends? Bonus.

Image courtesy of http://www.healingpausepaws.com/

8 Ways to Distract Yourself from Your Chronic Condition

No matter what you’re going through, be it depression, a chronic condition, or just a rough patch in your life, it’s important to give your mind and body a break now and then. A friend of mine, who is a Reiki practitioner, was over to do a session with me this past week. She told me that I needed to laugh more. I think this is true for all of us. As she said, as so many have said, “laughter is the best medicine.”

I think that laughter is a powerful form of distraction, the most powerful in fact. There are other ways to take a brief vacation from mental and biological negativity, however. Here’s are some things to try:

  1. Laugh. It’s not always as simple as just laughing. I get that. But what are some things that make you laugh? Silly movies? Ridiculous cat pictures? Baby animals? People falling down? Do you have a friend who always makes you smile? You used to laugh, and you need to do it more. Laughing hurts less than crying.
  2. Get creative. I learned to play the ukulele after I became disabled. It’s something I can do with my hands that doesn’t require thinking. I can play happy things or sad things. The point is that, while I’m playing, I’m not thinking about how much I hurt. I also draw and embroider. If you have a condition that limits your fine motor skills, there is always finger painting. I’m serious. Get messy! Make something! I shared the story of a woman I met at the Jefferson Headache Center who makes rubber band bracelets on a loom. She can only manage the energy to work on one for 15 minutes, but that’s enough time to finish. At the end, she’s happy to have a new bracelet. I have friends who are talented crafters, photographers, performers, and musicians… and all of them struggle with something.
  3. Learn something. Sometimes it’s hard to feel passionate about anything at all when you lack hope about the future. However, I bet there’s something you’ve always been curious about. Depening upon the severity of your condition and the level of your daily function, your ability to spend time with friends or dedicate a lot of energy to projects may be limited. But your mind still works, and it’s aching to be used and kept spry. From puzzles to out an out research on a topic to free online courses to actually enrolling in an online university… there are many ways to pursue knowledge and keep your brain in shape. Do you love science? History? Philosophy? Embrace your hunger for knowledge and force the spark for learning. The more you look into a topic, the more you might find you want to know. Not only will this give you something to talk about other than your condition (which is just a fact of life when you have anything with the word “chronic” in front of it), it will make you feel good about yourself.
  4. Netflix/Podcast binge. Yes, I said it.Binge. I know that studies have shown that a binge on shows can lead to negative emotional whatever. Fine. But you know what a binge does for me? It passes the hours upon hours that I spend in bed where I am absolutely unable to do anything other than just be in bed in pain. I can’t even look at the television, but I can listen to it. And if the light bothers me too much, podcasts are a beautiful thing. I spend hours alone while my family is at work and school. Having human voices around is nice. I can’t be productive, but I can listen to/watch things that interest me or comfort me. I can learn, I can laugh, I can feel uplifted… all from the comfort of my fetal position.
  5. Listen to music. Bob Marley said, “One good thing about music, when it hits you, you feel no pain.” I choose to take that in a lot of ways. Music is soothing, there’s no doubt about it. Your favourite tunes can elicit all kinds of memories. Actively creating music by playing an instrument or singing, and listening to music are both equally as restorative. You don’t have to listen to light, fluffy music. If you’re angry about what you’re going through, you might feel better if you listen to some angry music. Get it out. It’s okay to feel what you feel. You have every right to be upset about what’s happening to your mind and body. This list isn’t about sugar-coating your condition. It’s about distracting you.
  6. Do stuff with friends. This is a tricky one. Friends can be a double-edged sword. Your good friends who understand what you’re going through will treat you like a human being and not like a fragile doll. Everyone else might be weird around you and that might be unpleasant. Chronic conditions really show you who will stick by you, and you’ve lost people and made new friends a long the way. My husband and I have worked hard to construct a social life that brings the party to us yet allows me to rest and slip away if I need to. We have people over to our house, we ask friends to help with the set-up and clean-up. We make them potluck events so we aren’t doing a lot of the work. I have friends over for show marathons and silly sleep overs. I wear my pajamas because it’s my damned house. My friends are cool with this. They get it. My friends understand that I can’t always drive. We do ridiculous, silly things. It’s all about finding the right people to spend time with.
  7. Get physical. I don’t mean exercise. You should do that too. I mean touch someone, or have them touch you. Massage, caresses, tickling, even intimate touch can be a great distraction. It doesn’t have to be sexual. As much as I hate to admit it, when I’m having a horrible pain day, it’s pretty awesome when my dog licks my feet. I frequently ask my husband to touch my back lightly. Simply being touched on a part of my body that doesn’t hurt is a great distraction. When I’m home alone, I use a soft ball to apply pressure to sore points on my back. Tennis balls work too. Heating pads and ice packs help draw my attention away from my pain. It’s all about pulling my attention elsewhere.
  8. Meditation and breathing exercises. If you live with chronic pain or depression and you aren’t already meditating or practicing controlled breathing on a regular basis, now is the time to start! Introducing calmness into your world is important for your mental and physical health. I’m not going to try to pitch it to you. I’m just going to tell you that I meditate and I use breathing exercises and they help me immensely. I think they could be good for you and you should give them a shot. That’s just my opinion. Here are some great resources to try if you need some help:

MBHM Monster Brain Shirt

My son just got back from a three week jaunt across the US. We spent the evening around the fire pit, and then he wanted to take a real shower. After weeks of camp site showers, I don’t blame him. When he came out, he was wearing his MONSTER BRAIN tee! It’s so nice to have him home. it’s been lonely around the house during the day. My dog doesn’t talk back (much.)

You can get your own MONSTER BRAIN tee here! 

Enjoy the day!

Happy Painiversary, My Brain Hates Me!

MBHMlogo

Happy 3rd Painiversary, My Brain Hates Me!

In 2012, something started going wrong with my head. On August 7th, 2012, after my first productive and full day of work in a long while, I went home, sat down in my kitchen, and my head started hurting again. It never stopped. That day was both the last day I remember feeling good, and the beginning of my Monster Migraine.

It’s been a long, depressing, painful, maddening three years. There’s nothing happy about living with chronic pain. There’s nothing fun about being buried under tons of medical debt. There is no reason to celebrate today.

However, I’m alive. I’m alive and you’re reading this. Maybe your body has betrayed you in some way. Maybe someone you know lives with pain. Maybe someone you know thinks a little differently. Maybe you think a little differently. You’re alive too. We’re getting through the day.

This isn’t a joyous day for me, but it’s also not the end of the world. I live in the 8-10 pain range. all of the damned time. Yesterday, I had Botox treatment and a lot of new things were discussed at my appointment. I sleep sporadically. I’m grumpy frequently. I’m pretty darn depressed. I do have a family that loves me, though, and a ridiculous dog, and a roof over my head. Things could always be worse.

Therefore, on this day of sarcastic remembrance, I shall embrace the fact that I have grown as a person because of my pain and that I have accomplished some good things because of my pain, and that not everything is horrible.

Thank you for reading over the past few years, and for continuing to read in the years to come. You’re rad, and don’t let anyone tell you otherwise.

Love Your Friendly Neighborhood Pain Grump,

My Brain Hates Me

The Day of Reckoning for My Brain Hates Me- TN or Not TN?

Earlier this week, I discussed the “Suicide Disease” and why I hope I have it, and today I saw my beloved local neurologist and I was prepared to ask my questions.

Let me first say that I was there to receive a Botox treatment, something that I’ve had countless times, and something that has become old hat. It was something of a surprise when my doctor opened with, “some patients who have received Botox injections in their neck have died of pneumonia. I just wanted to let you know. No one with your condition has died, and we don’t know if it’s truly linked.”

When your medical appointments start off with needles in your face and your doctor telling you how other people have died from the thing that she is in the process of doing to you… you don’t have the warm fuzzies. But this is the sort of relationship my doctor and I have. There is no bullshit in the exam room.

Trigeminal Neuralgia – Check Yes or No

I let her know that I had two questions for her about some research I had done. Obviously, the huge question was, “can you rule out Trigeminal Neuralgia (TN)?”

The short answer is that my doctor can’t rule it out. The long answer is that if it is in fact an underlying cause for the pain I am in, I still have Status Migrainosus with refractory/intractable migraine and the TN doesn’t change that… merely gives us different treatment options. My MRIs have been clean, so I don’t have a trigeminal tumor. Therefore, the only course of action to determine if I have TN is to take the medication used primarily to treat TN, Oxcarbazepine.

Oxcarbazepine is an anti-seizure medication, like Topamax, and, like Topamax it is supposed to slow cognitive processing. It’s knon as a mood-stabilizer, however it has the standard suicidal-thought warnings as all anti-seizure medication. The really fun things about Oxcarbazepine are the dangerous side effects. It can cause bone marrow suppression and possibly a deadly rash! Exciting! Those side effects are rare. Medications are awful and to do good things for one part of your body they often have to destroy another part of your body. Topamax has been killing my kidneys for years. So far Oxcarbazepine makes me very, very dizzy (after two doses), but I’ve had no pain relief.

If the medication reduced my pain, then I have TN. If it doesn’t, well. I’ll stop taking it.

The Mother Fucker Gene

My second question had to do with the MTHFR gene, which I affectionately call the Mother Fucker gene. MTHFR, the methylenetetrahydrofolate reductase (MTHFR) gene, has been linked to a variety of medical disorders. A mutation in this gene causes vitamins not to be processed properly and then migraines can happen. I asked if I should be tested for the mutation and if there were any existing gene therapies worth exploring.

My doctor informed me that insurance typically doesn’t cover genetic testing of this nature, and that there aren’t existing therapies. I’ve done some reading, and there are specific supplements you can by that cater to the mutation, but there is little to no research speaking to there effectiveness. Most of the success stories are word-of-mouth. What did come out of this conversation with my doctor, and what I find most interesting and most terrifying, is the MTHFR’s link to PFO.

PFO, or patent foramen ovale, is a hole in the heart that didn’t close after birth. This defect in the heart is strongly linked to migraine, so much so that my doctor recommended an echocardiogram as soon as I brought up MTHFR. Her reasoning is that given my history and family history, it’s likely that I have the mutation, and that the echocardiogram is a painless stopgap. The worst case is that we discover the hole. If we do, she recommends the hole be closed because it might just help me feel better.

There are No Stupid Questions

I’m glad I asked my questions because there is now at least some momentum in my treatment. I can’t say whether it is forward momentum. My doctor also did a ton of blood work. I feel like this was the creative, out-of-the-box thinking she needed. I think she and I both admit that we’ve been stuck. We haven’t known what to do. There’s tons of new research, but what do you pick to try? And how do you broach the subject?

You ask questions.