My Experience with Online Therapy at

Yesterday, I had my first session with a clinical social worker and I was in my pajamas. Instead of sitting in a waiting room surrounded by germ-ridden magazines, dusty wall art, and administrative noise… I was in the comfort of my own bed.

130710160256492 is an Online Therapy service that provides access to mental health professionals via web cam. Sessions are conducted as a video call over a secure video system that you download when you register for the site. Sessions range in cost from $50 to $250 dollars a pop, and many have self-pay options for people without insurance.

Form this point forward, I am going to discuss my personal experience with and the mental health provider that I selected. There are multiple articles about Online Therapy, and many different websites that now provide the service, and I think that you, as a person who is reading this now and using the internet, are capable of using a search engine to find information about those sites.

I have Medicare parts A, B, and D. None of that provides mental health coverage. Therefore, I searched for a provider who had a self-pay rate I could afford. has a great search-filter set that allows you to winnow down to a list of professionals who will best suit you. I chose a young woman who is a clinical social worker. She’s worked with people who have histories of past trauma and abuse, as well as helping with depression and family issues. Her self-pay rate is $60 an hour. Phone sex actors and actresses make more than a dollar a minute, so I feel like this is an excellent deal.

When I selected her as my therapist, I was given the option of a free, 15 minute consultation. I chose to go ahead and schedule an appointment with her, because I don’t feel like 15 minutes is long enough to get into the things that I, personally, need to get out of therapy. When I scheduled my appointment for 2 PM, she promptly messaged me, using’s secure messaging system, to ask if I wanted a 30 or 60 minute session.

Her message to me was polite, upbeat, and made me feel like she was welcoming. She let me know that if I had any questions, she was happy to answer them. I did have questions about what would happen before our session, and if I’d have to fill out paperwork. This was information that I later received in an e-mail from, however she provided the information happily. I didn’t feel like I was hassling anyone, and I wasn’t made to feel dumb that I had missed the big, green “TUTORIAL” link on the home screen.

Before my session with A (which is what I will call her), she let me know that I’d have to read some terms and information and also fill out a mood assessment. This information only becomes available 10 minutes prior to your session. Is Beyond User Friendly

I’m web-savvy. I can figure things out on my own. With, I didn’t have to figure anything out. I asked, and was given information, and the website does an excellent job of making sure that your appointment will go smoothly. They offer a 15 minute test session where your tech issues get worked out. They check your internet connection to make sure that your session won’t be interrupted or lag. They tell you how to turn on your camera and mic. They show you where to download their secure video software. It’s user-friendly as all get out. I had no issues with the software installation.

The only tech problem that I had at all was caused by my son uploading things online when I had asked him not to. He created lag on my end, and there were 3 instances in which my video call with A froze. Gave Me the Best Therapy Experience I Have Ever Had

I don’t want to gush. I’m not a gusher. However, there is praise due to A, and to the way that Online Therapy works as a whole. Below are some issues that I have had with therapists and other professionals in the past:

  • They don’t start right on time
  • They aren’t prepared for my session and don’t seem focused on me at the start
  • They take care of administrative tasks in front of me, such as billing, insurance calls, etc
  • They answer phone calls during sessions
  • They have to start from the BASICS in our first session and ask standard questions as opposed to actively listening and letting me talk about why I am there
  • There’s too much paperwork… paperwork… paperwork
  • They assume that I will be back and want to work with them
  • Waiting rooms suck
  • Receptionists vary from awesome to rude

None of this was the case with my session with A. Here is what was different about my Online Therapy session:

  • My start time was scheduled for 2 PM. My therapist video called me at 2 PM
  • My therapist used information from the e-mails I sent her prior to our session to break the ice, “You say you’ve been in therapy before…” and seemed prepared to talk
  • takes care of all of the paperwork before your start time, and separately from your therapy session. I wasn’t charged to do paperwork, and I wasn’t bogged down by a lot of administrative yuck. My therapist merely took notes in front of me
  • My therapist had her phone accessible at the start of the session, and stated that she was having technical problems on her end and was going to call me. Luckily, the website cooperated and she didn’t have to. I never saw or heard her phone again
  • My Online Therapy session was centered around me. I didn’t have to explain why I was there or justify wanting therapy. I was permitted to dive right into my issues and ramble. She asked reflective questions and showed true active listening skills the entire time. It wasn’t until 30 minutes into our session that she began directing the conversation back to things she wanted to get more information about. And when she asked, she was informed
  • She said phrases like, “if you want to work with me,” and “I’d be excited to work with you on these issues.” At no point did I feel that she was above me. She made no assumptions. She praised me for reaching out to someone, and acted humble about the fact that I had chosen her, and that I wanted to keep seeing her for a bit
  • I didn’t have to deal with a waiting room. I didn’t have to talk to a receptionist to schedule my next appointment. My therapist scheduled my next appointment and I received a confirmation on my home screen Allows True Connections with Your Therapist

A, my new therapist, said that I… her meager client, could message her before our sessions with the topics I’d like to discuss. She said that it would give her a chance to look up possible resources for me to use outside of our sessions. She said that if I need her at any time while in crisis, to contact her and she will work with me. She was utterly focused on me and my needs as a human being during our session. Because I was at home, in my comfy bed, I felt so very safe discussing harder topics with a complete stranger. I left the session I had with her feeling like I had done therapy work, instead of going through therapy motions. That is extremely important to me.

Granted, this is my experience with one of their providers. However, I have to speak for those of us who are uncomfortable in office settings, or can’t always make appointments because we don’t feel well, or don’t like to make eye contact. Online Therapy permitted me to have my physical comfort needs met. I didn’t have to look at the screen. I could just listen and talk. She could see me. I could see her. She looked into the camera. I looked to the side. I could fidget. I could take sips of things. I had everything I needed without having to ask for it. It’s tremendous to be disabled or neurodiverse and have access to therapy that makes your environment for you.

Having control over your environment is so important when you’re talking about things that make you feel vulnerable.

Final Thoughts about My Therapist

There is one important thing that A did that no other therapist has done before. She asked what I have disliked about previous therapy sessions in which I’ve participated.

That’s a huge question. We all know I’m a quitter when I’ve decided that something just IS NOT WORKING (for me) and that I bail. I bail hard. I admit to it. I don’t see the point in dragging things out if there is no hope. I’ve left so many therapists.

Why? Well, here is the short list: feeling judged for my relationship style or sexual orientation, feeling like the professional was more focused on how interesting I was than helping me, feeling like the therapist was focusing too much on an issue that I felt was tertiary to the core issues I need to work on, feeling like the therapist had made a decision about something in my life and was exerting their personal opinion in session… etc.

I said all of this to A. She made notes. I told her that I, as a researcher and knowledge-seeker, have been doing my own trauma work and that I am ready to just dive into the deep issues I have from my past. She said she wasn’t sure if that was okay. More than okay. More than okay.

I like her. I hope this works out. Because I surely do like going to her office, aka my bedroom.

Also, I can go to therapy sessions without wearing pants. Bonus.


This is the thing that everyone really wants to know. I will reiterate that there are mental health providers who don’t require insurance. It isn’t a hassle to not have mental health coverage and the self-pay rates for many are reasonable. takes your credit or debit card information when you sign up, and then charges you after your session. It was easy. There was no extra billing to take care of.

Again, minimal paperwork with this site.

Things Professionals Can’t Do

They can’t prescribe medication. That’s the biggest thing. And honestly, I don’t go to therapy for medication. I see doctors for medication. I can find psychiatrists who will take mental health recommendations from my doctors if needed. Yet, my neurologist has been managing my antidepressants because she’s my primary prescriber and juggles all of my meds.

They have a long list of Terms and Conditions. As expected. Otherwise, except for the medication thing, I really haven’t seen a hole in what I consider MY therapy needs.

So far, 4 stars for and 5 stars for my new therapist.


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

5 Quick Self Care Tips


Bad day? Here are 5 things you can do RIGHT NOW to feel better:
  1. EAT, SLEEP, HYDRATE! Okay, that’s three things. I cheated. But, trust me, if you’re hungry, tired, or dehydrated- you can feel better instantly by taking care of it NOW!
  2. MUSIC! Listen to something that soothes you. It could be Enya or your fave death metal. It doesn’t matter what you choose, so long as it speaks to your inner calm.
  3. BREATH! Try the 4-7-8 breathing exercise, or any deep breathing strategy to relax your body and engage  the parasympathetic nervous system. It slows the heart rate and calms the body.
  4. CREATE! Art can take our brains to another place. It can help us focus when we listen, and help us express feelings in a safe way. It can also help us relax. Try painting, colouring, or using whatever you have on hand to get creative. anything crafty will do. Sew, knit, sculpt, glue something! It doesn’t have to be pretty to make you feel better.
  5. CHANGE YOUR ENVIRONMENT! If you’re at work, try taking a quick break. If you’re at home, change rooms. Wherever you are, if you are upset, in pain, or anxious… it can help your mind and body switch gears if you change locations. Work within your limits. If a walk is too challenging, sit on the porch. If you can’t take a break at work, try a quick stretch. Adjust the temperature, change the channel, cuddle something soft. Think of the following words when you’re making a change: stimulate, distract, control.

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

Power of Pain Foundation

Donate to or become a delegate yourself by clicking here:

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

American Foundation for Suicide Prevention


International Bipolar Foundation

No Stigmas

Active Minds

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13 Darkly Motivational Quotes

When getting through the day is my goal, a sappy quote about success and achievement doesn’t motivate me to keep going until tomorrow. I prefer the comfort of bittersweet words that ring true. Sometimes, it’s worse to feel alone with you’re unhappiness than to be unhappy. Here are some quotes that I’ve found motivational over the years:

  • “My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.”

– Cary Grant

  • “It’s possible to love a human being if you don’t know them too well.”
  • “If you’re losing your soul and you know it, then you’ve still got a soul left to lose.”

– Charles Bukowski


  • “You can’t really be strong until you see a funny side to things.”
  • “The trouble with super heroes is what to do between phone booths.”

– Ken Kesey

  • “How wrong it is for a woman to expect the man to build the world she wants, rather than to create it herself.”
  • “Do not seek the because – in love there is no because, no reason, no explanation, no solutions.”

– Anaïs Nin

  • “Passion is what gets you through the hardest times that might otherwise make strong men weak, or make you give up.”

– Neil deGrasse Tyson

  • “Time moves in one direction, memory in another.”
  • “For years I have been mourning and not for my dead, it is for this boy for whatever corner in my heart died when his childhood slid out of my arms.”

– William Gibson

  • “Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.”

-Ray Bradbury

  • “Beware of monotony; it’s the mother of all the deadly sins.”
  • “If only we’d stop trying to be happy we’d have a pretty good time.”

– Edith Wharton

Why I Talk About Pain & Depression & You Should Too

Depressed vs. Depressing

Many people in my life know me as a cheerful, friendly person. I’ve been called caring and giving. Someone once even went so far as to call me “sunny.”  Those aren’t ways in which you’d expect to hear a person living with extreme chronic pain and depression to be described. When people hear “chronic pain and ” they often think “miserable, awful, unbearable”… “sunny”  is the last word they’d use.

And that’s why I talk about what is happening to my body and my mind. That’s why I share the darkest thoughts that I have, and my bad days, and my painful hours through this blog. I feel that it is important for people to understand that a human being is not the sum of their diagnosis. I am not my pain. I can be miserable and I can enjoy life.

I have moments when I don’t want to live. The remainder of the time I’m thinking about how thankful I am for the time I have with my family. I have moments when my pain is so tremendous that everything else in the world stops and I am alone in a dark room, enshrouded by despair. I also have functional hours where I suffer through putting on makeup and socialize, smiling and laughing with my friends… pretending that the pain doesn’t exist.

Accepting Myself

My pain and depression and anxiety and my ASD don’t ever go away. These are things that are part of me. I used to be ashamed of them. I let people make me feel ashamed of them. I allowed doctors and friends and family to tell me that these were things to get over… from which I had to recover. I allowed other people’s discomfort with my health and mental state dictate how I interacted with the world. Mind you, I’m not saying that I’m not trying to find a cure for my chronic pain or proper treatment options to manage my depression or anxiety. I very much want to stop the pain I live with daily and I would love to live without negative thoughts. However, these things are part of my current existence and I shouldn’t have to hide them. I most certainly shouldn’t have to be ashamed of them.

ASD is not a thing to be cured. My Monster Migraine is not my fault. Depression and anxiety are also not my fault. These are not things I am doing wrong in my life. ASD is how my brain processes information. The rest is unfortunate, but part of who I am now.

But guess what? I’m also a positive, sunny, caring, helpful person who smiles and laughs. I’m silly.

Why I Won’t Shut Up

I talk about pain and depression because they are things that happen to me. I want the people I know to understand what I’m going through. I want people who might be going through similar issues to feel like they aren’t alone. I want the medical community to understand that patients are human beings who share their experiences, deserve the best possible care. Frankly, I also find it therapeutic to talk about my issues freely and be part of a community of people I consider to be survivors of themselves.

I’m not talking about the latest breakthroughs in anti-depressants during entire social engagements. I’m not waxing philosophical about suicide prevention around the dinner table. I am being honest with people when they ask how I am, and correcting misinformation in conversations when I hear it, and updating people if they show curiosity about my condition. Therefore, talking about pain and depression doesn’t have to be a constant endeavor, it just has to be something that I’m open to when the opportunity arises.

Why You Should Talk About Your Pain & Depression

Aside from the obvious therapeutic benefits that being heard and understood can provide, you would be amazed how may people don’t know about your condition. You’d also be surprised how many people know a little bit about your condition, but what they do know is horribly incorrect. You’d also be surprised that for every few people you talk to openly about your pain and depression, you may be giving someone the strength to speak out about their own suffering.

I would not have started this blog had it not been for other people who had the courage to talk about this weird thing going on with their brains. I would not have become an advocate for mental health awareness. I wouldn’t have learned as much as I have about.

You should not be ashamed to talk about suicidal thoughts, depression, anxiety, or chronic conditions because they aren’t your fault and because there are people who will support you. You may not know those people yet, or you might be surrounded by those people right now and they just don’t know how to help you and support you because they don’t understand what you’re going through.

Talk about it. I do. It helps.

Where and How to Talk About It

Here is a My Brain Hates Me (very much not a medical or psychological professional) Guide to ways to talk about what’s going on with your body and your mind:

The Poseidon Effect

In 1972’s “The Poseidon Adventure,” Gene Hackman leads a ragtag group of survivors through the maze that has been born of a luxury liner turned upside down. Along the way he loses members of the surviving group to various and literal trials by water, fire, and even steam. What was once a glamourous, exciting vacation, became a hellish mirror world, and very few made it out alive.

The movie won an Oscar for “Best Original Song” with “The Morning After.” The line from the chorus goes, “There’s got to be a morning after, if we can make it through the night…”

“There’s got to be a morning after, if we can make it through the night…”

If ever there were a more appropriate song to sing to one’s self in dark times, I can’t think of it. Maureen McGovern’s classically 70’s girl-swoon makes the song sad, and hopeful, and tender. Just what any chronic pain or depression sufferer needs. It’s not too upbeat and happy, but there’s something good in it.

I think about “The Poseidon Adventure” frequently. Perhaps it’s because it’s a movie that I saw many times as a child and it just stuck with me. Perhaps it’s because I like the song. Maybe I just enjoy the film for what it is… a well-crafted disaster movie with an interesting plot.

However, there is some part of me that embraces “The Poseidon Adventure” as a twisted metaphor for my life. I was but a happy traveler and then things went horribly wrong, and now I’m making my way through something that was once beautiful. Now it’s wrong, somehow. Everything is upside down and I don’t recognize much of it. Sometimes I don’t even recognize myself. Wasn’t I wearing a fancy dress and glamorous? Why am I disheveled and scared?

Gene Hackman’s character is a non-nonsense reverend. He’s cool, not in the sunglasses sense, but in the cool-headed, guy you’d want to follow in a crisis sense. He spends the entire movie yelling at everyone for being weak while also encouraging them to go on. Today, I feel weak. And I’m beating myself up about it. What I’m missing is the voice that says, “you can do it, damn it!”

I need some Hackman in my life.

Reverend Hackman’s character says, “So what resolution should we make for the new year? It’s to let God know that you have the guts and the will to do it alone. Resolve to fight for yourselves, and for others, for those you love. And that part of God within you will be fighting with you all the way.”

Resolve to fight for myself, and that part of God within me will be fighting with me.

Right on, Hackman. Right on.


Crying is the body’s way to relieve stress during times of anxiety. When I go through periods when I feel like I have to cry all of the time it means that I’m experiencing a lot of pain, and then stress and anxiety resulting from that pain.

The past several days have been very difficult. I don’t want to describe it as depression because it feels different than that. “Despair” is far more appropriate. I have had to cancel plans, beg off of events, and miss out on important milestones in my son’s life over the past two years because of my neurological condition, and in the past four days I’ve missed out on all of those things. It’s like an amplified level of guilt and distress over the burden that I am on my family.

Today, my husband went into our bedroom to take a nap and I was concerned that he was upset with me over all of the crying and general level of neediness I’ve exhibited all weekend. He simply asked if he could take some time to rest without having to pet or coddle me. This made me feel infinitely worse.

No, I’m not a burden, and no, my husband isn’t exasperated by my current emotional state. Yes, I’m in a bad place. Yes, it is fueled by worry that I won’t be able to do very much, if anything at all, for Thanksgiving for my family. Yes, my emotional… aura… or atmosphere… or whatever… negatively influences my husband’s mood and exhausts him emotionally. Yes, we as a family are still learning to take care of one another.

I let him sleep. I cried more. I clung to an ice pack for a while.

We ate dinner.

I’ll cry more and eventually sleep and hopefully this feeling will go away tomorrow.

Crying is the body’s way to relieve stress during times of anxiety.  It is better to let the body cry than to try to hold it in.

It’s only been three days. Perhaps, I’m not really letting go yet.

How to Lose a Therapist in Two Sessions

I feel like I have too much to cover for one blog, so I will focus on the matter at hand: I’m trying to dump Dr. B., my Psychologist.

I started genuine art therapy with T.W. (I really need to find out what to call her because calling her by her full name all the time isn’t charming in the least) and I love it. I also saw Dr. W. for my biofeedback consultation and we’ve agreed to start something called LENS (low energy neural something or other- I’ll look it up later and write all about it once I’ve actually done it so I am truly informative and not just spouting bits from Wiki articles and medical journals.) Both of them agree that I have a rich history of fucked-upness and lots of fun things to address.

Which brings me to Dr. B.

I fully intended to break up with him on Friday. I had this big plan. I was going to go to my psychotherapy session. I was going to tell him I was seeing these other mental health care professionals. I was going to say that it wasn’t him, it was me, that I felt they were a better fit and that to save money I should cut him out. I was going to leave gracefully and thank him. It was going to be smooth and beautiful and, dare I say, perfect.

Obviously, that isn’t what happened. The first thing that went wrong was that my husband drove me to my session, and he took a route I have never been. Now, this wouldn’t be an issue if you weren’t me. But I am me and I have a way that I go to therapy and I started panicking and wringing my hands and fretting that we were going to be late. The chemical reactions that cause me to have meltdowns began. I didn’t know where we were. My husband was telling me it was going to be okay. Of course I didn’t trust a word coming out of his mouth. He was sabotaging me. He was my enemy and trying to undermine all of my plans.

We arrived at therapy on time with no issues.

I felt better.

Boy oh boy, was I chemically keyed up though.

I did well. I got through the bit about seeing other therapists.  He took it well. He was dismissive, as expected, about the art therapy, but positive seeming. He was more interested in the biofeedback stuff. Then Dr. B. thew me a curve ball and actually asked a productive question. It was if he had been taken over by some other Psychologist. Was this really Dr. B.?

“So you mentioned wanting to work on this depression,” he said, “can you tell me what it feels like?”

I told him about how it felt… in all of its not wanting to wake up in the morning, wet blanket glory. His response was to tell me that I have a lot of rules in my life and that I need to relax. He became very focused on my OCD behaviours that bring me comfort and make me feel in control.

He said, “I’m not yelling at you, but I’m yelling at you…”

Which of course triggered a huge negative response, because I suddenly felt like I was in trouble for the things that I do that bring me comfort, like putting on lotion and lipgloss and chewing gum in the car. He asked me if it was a relief when I didn’t have to get all dressed and primp before leaving the house. I told him that I feel naked and exposed and I miss being girly and presenting myself well.

I was entirely stressed out. He was telling me that the things I love to do because they make it easier to face the world were wrong and causing me to be uptight. He was calling me uptight. I was on the verge of tears. Then our session was over. No cool down. No, “Are you okay?”

I just left. I sobbed in the car and asked my husband if the things I did were so wrong. I’m crying now as I type this because I still don’t know. I don’t feel that any mental health professional should make me feel like the things I do that bring me comfort are wrong. He didn’t offer solutions. He just made me feel like my rules and my self-guidelines and my structure… all of it is wrong.

I’m autistic. Structure keeps my world in check. It helps things along. I have been more lax about things and socially active with the Lexapro and I consider this good progress, normal progress.

There have been so many people telling me I am uptight lately. That I place too much emphasis on appearance. That I have too many rules. I have these things because they help me function in the world. I do know how to relax. It’s just difficult.

It’s difficult. That’s what biofeedback and art therapy are helping me with.

I don’t know how to dump Dr. B.. I don’t know that I can go back there and be assertive. He made me feel like a child who was in trouble. I shouldn’t feel that way in a mental health setting.

I did not make another appointment.

It has made me think a great deal about who I am and my rights as a person. I feel like it is okay for me to have OCD behaviours if they aren’t interrupting my life or causing me to miss out on anything. My depression and anxiety are deeply rooted in things from my past that my art therapist is going to help me cope with. She recognized a lot of loss. She’s correct. I don’t handle loss as well as I could and it makes me hold on to things to feel in control. My husband has actually helped me with some of my tendencies to hold on to stuff. I don’t keep stuff like I used to. I am able to throw away things an donate things where I never could. I have made a great deal of progress as an adult human. I recognize and celebrate that progress. I have also backslid in some of my social skills because I am home and away from people due to being in pain. I am trying to be more social to rectify that. It is very hard and very taxing, but I am trying my damnedest. I am focusing on mental well-being.

I also have a friend focusing on the spiritual goings-on in my home, and since he has been doing whatever he is doing I have been going to sleep when I hit the pillow an sleeping through the night. Coincidence or otherwise, I don’t care. A full night’s rest every night for nearly a week is something I will gladly accept, no matter the cause.

Therapy Anxiety and the Giant Ukulele

Yesterday, I had my first art therapy appointment with T.W.. My homework prior to the appointment was to make a timeline of all of the emotionally significant events in my life so that she’d have some framework around which to develop my treatment plan and diagnosis. I also had to purchase a sketchbook and oil pastels.

Unlike my Psychologist, Dr. B. I have an actual “in writing” treatment plan that focuses on loss, depression, coping with pain and family communication, etc. I’m excited about that. I enjoy plans. I like knowing what to expect, rather than just walking in, sitting down, and telling Dr. B. about my week… which hasn’t really addressed mourning my mother… etc. T.W. then had me draw something that I considered safe and happy, and then we discussed a time when I was faced with a trauma and loss and I had to draw that too. We kept coming back to my picture of the ukulele I had drawn, my ukulele. It’s Cognitive Behavioural Therapy that focuses on coping with trauma. I’m down with that. This girl has had a great deal of trauma. I’d love to deal with my PTSD.

T.W. made an excellent observation when she asked me how I, as a six year old, coped with the death of my baby brothers. I told her that I think it is important for children to understand that death is a natural part of life and it shouldn’t be hidden away. She said that I was six. I was a little girl. I watched them die. How could that possibly feel natural or fair to a six year old? I suppose I will have to talk to her about losing cats, and the dead birds, and having funerals for animals. I will have to talk to her about beloved pets dying in my arms. About stepping on a tiny kitten accidentally and crushing its skull just enough to mess it up in a way that I knew wasn’t good. I will have to talk to her about reaching into cat vaginas when they were breaching because my hands were small enough and pulling out live kitten after live kitten… and then sometimes they weren’t alive. I will have to talk to her about those things. About cats committing suicide. About sliding feeding tubes down their throats. About how life is a delicate and fleeting thing, and how humans are really just big animals and we all have souls.

That should be interesting.

I like her.

Her observation was that I intellectualize but my head and hear don’t always communicate. This is true. Sometimes instead of protecting my heart, which I at times wear on my sleeve and at times lock away behind angst, I simply rationalize rationalize rationalize. I do. This is true. Good show, T.W.

Today, I have my biofeedback intake session. Because I don’t just get to have biofeedback therapy but have to be evaluated for eligibility, I am very stressed. I had a dream last night about opening up to the Psychologist, Dr. W., and suddenly being in a classroom of people including my arch-nemesis from preschool. Essentially, I feel vulnerable and as if I have to prove myself. What if my depression, anxiety, PTSD, HFA, and chronic pain disorder aren’t good enough to get biofeedback? Egads!

Luckily, my husband has a rare paid rain day off, so he is driving me. I will feel less icky icky bleh with his presence.

I’m sure it will go well enough.


New Therapist? Could Be!

I haven’t been overly thrilled with my Psychologist, Dr. B. of late. Today I had an intake with a delightful woman, T.W. ( I don’t know what to call her. Hmm. OH NO!) who specializes in art therapy and all of the fun mood disorder issues that I have. YAY!

She originally came from a corporate background and also has a chronic pain condition. She’s very empathetic. I already have homework, and she’ll have a treatment plan for me by next week. I’m excited. I feel like I accomplished more today just from the intake than I have in a year of working with Dr. B. and we didn’t even really do anything.

The most telling thing is that I feel comfortable making eye contact with her. I feel at ease with her. I don’t feel like she’s amused by me. I feel like she’s interested and caring. This is important.

We’re doing a six week trial run. I will at least get to create some art in the process.

Now I have therapy appointments next Wednesday, Thursday, and Friday.




Let me start by saying, I’ve been in a really bad place.

Allow me to continue by saying that I am still in that bad place, but I have some better tools to deal with where I am so I am now ready to be more open with all of you about what’s been going on in my world. It might take me a bit to get caught up. I’m going to copy some information from my Status Migrainosus & Refractory/Chronic Pain page to briefly update you right now, and then I will discuss some things in more detail in later posts as I feel up to it.

I want to get this off my chest. I feel very ashamed of my condition and the fact that I don’t know how to explain it to people and the “why me” feelings and the fact that I don’t know what to do when I’m not in pain and I don’t know what to do when I’m in pain. I just don’t know what to do. I am at a very big transitional stage of my life. I am on the verge of something. It feels important. I should not feel ashamed of that. One of the pieces of the important feeling is that I am trying to become a better advocate for neurodiversity and for chronic pain sufferers. These are two areas of my life that I am not very open about except on an anonymous blog and with close friends and family. That in and of its self makes me feel ashamed. I am working towards changing that but I don’t know that I am ready to take that step just yet.

I don’t know that my experience is important enough or helpful enough to share, but I’m sharing it because I got the right help early enough because I read all of these horror stories online. I read about people living for years with headache pain and migraine pain and nausea. People losing their entire lives. I thought, “Crap, that won’t be me. No way. There has to be something that will help me.”

Here I am, nearly two years later, getting the best help there is, and still living with this pain, and all I can say is a big, fat THANK YOU to all of the people out there who are suffering and take the time to share their stories with us. I wouldn’t have thought it could get worse. I wouldn’t have known it was okay to look for better doctors. I wouldn’t have done as much research. I wouldn’t have started this blog. I wouldn’t have lasted through so many painful, miserable, sleepless nights if it weren’t for you strong people out there getting through this day and the next day. If I didn’t know that you were there, I don’t know that I could be where I am right now.

At this moment I am pain free. It may be fleeting. It might last a while. I’m enjoying it while it’s here. It’s been a very difficult an dark journey to this moment. I’ve been pain free before. The pain came back. I lived through all of it. If you’re reading this and you’re in pain, whatever is going on, you are going to live though it too. We are strong. I know that we are strong because a perfect stranger told me I was strong. I’ll share that story with all of you soon. Perhaps this evening. For now, check out the update below to catch up a bit… and say hello. I’d love to hear from you. I miss you all. I promise I’ll be a better blog-personthingwhatever going forward. Deal?


(Warning- Contents may not be very fun)

March, 2014 Update

I had another Botox treatment. I don’t believe that they are helping, but I have an appointment to see my doctor at the Jefferson Headache Center for a follow-up on the 31st. I anticipate a scheduled hospitalization thereafter so I want a fresh Botox to work alongside the therapies/medications I receive in the hospital. At this point I feel very broken and victim to the pain. I try my best to be strong for my family, but the facade I’ve kept up for so long has cracked and my HFA and the pain are playing off on another. It is as if I am a mad woman. My meltdowns are entirely out of control and I believe the Mexiletine may be at fault. Dr. H. is having me get labs done to check the level of Mexiletine in my blood so Jefferson will have it. I go Monday so I won’t be able to get my blood drawn until after I go to Philadelphia. I am not looking forward to the ride to Philly, the prospect of hospitalization. Any of it. I’m not very hope-filled right now.

Jefferson Headache Center Follow-Up (March 31) Update

Based upon my psych-screening intake forms, my doctor at the Jefferson Headache Clinic has come to the conclusion that I have been dehumanized by the extreme level of pain I’ve been in over the course of the last 19 months, especially since the turning of the year. My thoughts of suicide but indication that I would not act, my utter lack of social… anything save for few and far between activities that I carve out for myself. My lack of self-esteem… all of these things, etc etc etc.  I feel sub-human, therefore I am become sub-human. Thank goodness they understand.

His concern is that medication is exacerbating existing tendencies towards depression and anxiety so he has taken me off of Mexiletine entirely. Cold turkey. I am, as I knew, to be admitted to the Thomas Jefferson University Hospital at Methodist (as I was in late July, 2013 [see above]) where I will be tapered off of Propanolol. Propanolol also has a depression-causing side effect and causes weight-gain (thank you 20 lbs, please go away now) because it restricts involuntary muscle movement. Interesting!

I am to begin taking Butterbur, an herb used as far back as the 14th or 15th century. It has no documented negative side effects. It has been used as a migraine/headache preventative for centuries and also helps with anxiety, pain, intestinal issues, and insomnia. It can “stimulate the appetite” but I’m nauseous and lack appetite most of the time so perhaps it will encourage me to eat lunch. I take 75 mg twice a day.

May, 2014 Update

Jefferson Headache Center Hospitalization

I was hospitalized in Philadelphia on May 5th, 2014 with pain level of 8.5 on a 1-10 pain scale. I left with zero pain. On Wednesday night I was pain level 2 when I woke. The doctors decided to do a nerve block that afternoon. I received 3 injection of lidocaine and They inserted a PICC line in the early afternoon and began the following routine:

  • Constant Lidocaine .5 mg/min drip steadily increased to 4.5 mg/min over the course of the 6 days I was there with which I experienced only one abnormal dream and no hallucinations
  • Reglan at I think 2 mg/min for 20 or 30 minutes then DHE for 30 minutes both every 4 hours. The DHE dose started at .5 mg/min and increased to 1.5 or 2 by the last morning. I stopped paying attention. Not everyone can tolerate DHE, but you get to leave sooner if you can. It all depends on your heart
  • TORADOL®(ketorolac tromethamine) after the DHE. I can’t recall the dose. It ran for 20 minutes. It’s an NSAID pain medication. They will only give you 9 doses, so I only got 4 a day for 3 days. 3 days is the magic pain medication number. No more than 3 days of pain meds straight, and no more than 10 days taking pain meds a month. Otherwise if you are admitted to the Headache Center they will add an additional 3 days to your stay just to detox you from the pain medication. I haven’t been through that because I am not a happy medication taker, but I can’t imagine it’s fun. 
  • 2 initial EKGs and daily EKGs at 9 PM
  • Blood draws! Every morning at 4 freaking AM. They will turn on the brightest lights and they will just randomly stab you with needles and bruise the hell out of you
  • Heparin shots in your belly a few times a day to prevent clotting
  • Heparin and saline flushes in the PICC lines to prevent clotting
  • Jean Paul Gautier inspired boot-like pressure things that go on your legs and make you feel either claustrophobic or like a pampered, massaged, Hospital Octopus. I chose to feel like a Hospital Octopus… hooked up to ALL THE THINGS
  • Meals that smell funny, but the grits are good

I left the hospital around Noon on Sunday, May 10th, pain free… just in time for Mother’s Day.  They have added Lexapro and iron supplements and Zanaflex (Tizanidine) to my daily meds. Lexapro I have taken before for depression, and it also has a nice anti-anxiety bonus that should help my HFA-brain stop being such a worry-wort about pain. The iron is because, as usual… anemic. YAY! And the Zanaflex is another rescue medication. I take Clonazepam nightly for insomnia and it has the anti-anxiety bonus. I take Midrin for pain PRN. I take DHE in nasal spray and injectible form as a rescue at a level 8 or higher (I think that’s the number. I don’t have my treatment plan in front of me.) I take the Zanaflex when I have severe insomnia and/or severe pain. So Zanaflex is the last line of defense and it isn’t a pain killer, it’s a muscle relaxer. I’ve had one. I was out in half an hour and awake at 4 am. Unfortunately I was at home and there was no one who needed to take my blood, so I just talked my husband’s head off.

May 12th. My head is pokey. But it’s still a 0-1. It’s workable.

There is Nothing to Worry About… Until There Is

I had my post-nerve-block follow-up with Dr. H. today. Here are the bullet points:

  • She’s been doing some reading and found that pretty much all of the medications I’m on cause things like excessive crying and anxiety because they are neuro-psych drugs. Yep. I’ve been crying a lot. Therefore she was fine with keeping me on the Clonazepam for another few months
  • I am exhibiting weakness in my left side and some “drift” (whatever that is) and have an MRI scheduled for the 25th. This normally wouldn’t be a big deal except that my doctor started acting differently toward me. Typically, doctors talk about how these things are routine and blah blah nothing to worry about blah blah. She didn’t. She said she had “concerns.” Granted, Dr. H. and I have a close relationship and we’re pretty honest with one another about what’s going on with my health. Perhaps she felt that sugar-coating things would be a betrayal of the trust she’s built with me. But I don’t know that. All I know is that my appointment started to go differently and she has concerns. I cried in the car on the way home
  • I will not get more nerve blocks except on an emergency basis since they didn’t do much
  • I get Botox again on February 20 somethingth and follow up with Dr. H. on April 15th
  • I see Dr. M. at the Jefferson Headache Center on March 31st
  • My disability runs out in April

Hopelessness, Loneliness, and Despair – Oh My!

I can’t get to sleep and, after hours and hours and hours of waiting and distraction and trying to meditate, once I do get to sleep I don’t sleep well. I have nightmares. The pain from my head seeps into my dreams and comes out as being shot in the head, stabbed in the head, having my eye ripped out, being bludgeoned by a brick, and other fun manifestations.

The less sleep I get the worse my head and nausea are.

Lately I’ve been fantasizing about having a stroke and just letting the pieces fall where they may. Most recently I’ve been thinking about cutting my wrists… which is odd for me because veins wig me out.

I don’t want to die. I’m a positive person and I know that things are going to be okay… and last night my husband told me things are going to work out and he told me without me having to ask him to tell me. He told me because he either knew I needed to hear it or he believes it.

I told him I’m having trouble believing it right now.

But things will work out. They always do.

Last night I was searching for crisis/suicide chats. Their servers were all full. Their volunteers were all busy. I”m not a danger to myself or others so I felt ridiculous pursuing that thought in the first place. I tried to talk to a friend, but, as is the case  with the limited batch of friends I have, the friend couldn’t stick around just then. I cried for a long time last night. I must have disturbed my husband off and on, because when I finally woke him and told him I didn’t want to be alone and that I’d been crying for a long time he said he knew.

But he couldn’t stay awake to keep me from being alone, and I can’t ask him to because he has to do everything… everything right now.

I turned on the TV and played two movies and stared at the ceiling fan. I don’t remember what movies they were. Something about a serial killers. You know, upbeat stuff.

Where do you go when you hurt and you’re crying and you keep fantasizing selfishly about the glorious world of “Not Here Anymore?”… when it’s late and dark and you have no one to call and your family needs their sleep. Where do you go to end this utter despair that aches inside your bones almost as much as the pain burns inside your head?

Ice cream?

How Stigma Can Inhibit Healing | Irish Katie / Amberville

An amazing piece by Amber of Amberville

“Depression can hit anyone, any age, any position in life. It does not discriminate.

People suffering with anxiety… they are lonely. They say they have no friends. life becomes an endless tunnel. They have such a hard time talking with anyone. To have friends, oh yes they want friends, they know how special they are. They can not climb the wall to get out to form friendships.

We need to take down these walls.”

via How Stigma Can Inhibit Healing | Irish Katie.