My Perfectly Okay Codependent Relationship… with My Dog

Meet Oliver:

Terrible doggie

Oliver Wilkes Dogg (Puggle extraordinaire) is my non-human life partner and we have a codependent relationship. We are not ashamed. Oliver is the literal reason that I get out of bed in the morning (around 9 when he wants to go out after his post-breakfast nap.) Oliver is the reason I get exercise (because I have to race through the house telling him not to pee on something before I can get him outside.) Oliver is my napping buddy. Oliver is a source of joy and laughter and unconditional affection. Oliver is terrible in the best way.

Oliver eats our underwear. Oliver unabashedly goes to the bathroom as a means of punishing us for wrongs we don’t know we’ve committed. Oliver carries the skins of his stuffed animal victims around with him. Except Burnie, Oliver loves his dragon, Burnie, and has left him mainly intact.

Oliver eats like a goat… paper towels, tissues, any kind of food, plastic, money hair accessories, or bath accessories. You name it, Oliver has swallowed it whole and lived to tell the tale in the voice that we use to talk for him.

Oliver sleeps like this:

Sleeping terrible doggie

… especially when we’re upset with him.

Or like this:

Doggie tongue

… because he is a master manipulator and uses his powers of puppy-face against us so we don’t kill him.

Oliver is my best friend. When my head hurts, Oliver says, “Mama and I have a migraine,” and he curls up under the covers and naps all day with no complaints. When I’m upset, or having a really bad pain day, he puts himself across my body like a seat belt and keeps me warm and secure. He isn’t afraid of my meltdowns. He doesn’t mind that sometimes I’m not in the mood for his whimsy. He just carries on being whimsical at me until I am in the mood. He licks my feet when they are freezing. He gets his one kiss a day. Petting him makes me feel nice. I have trouble sleeping when he is elsewhere.

I have a codependent relationship with my dog, and that’s okay.

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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.

“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.

When Your Friends Disappear — Pain News Network

I lost many things during my diagnostic process and beyond, and friendships had the highest casualty rate. Pat Ackerberg had a similar experience and has some wisdom to share:

“Now, more than ever, you look to your closest friends or family to stand by you and catch you before you fall and break, like Humpty Dumpty.

But like a “trust-fall” exercise gone wrong – right when you need their safety net the most – they aren’t there!  And you fall hard.” – Pat Ackerberg

via When Your Friends Disappear — Pain News Network.

On Marriage Equality

TLDR: YAY MARRIAGE EQUALITY! We’re happy… so let’s not be jerks to the people who aren’t happy. Let’s show them compassion and be decent human beings with our words and actions.

Yes, many people have hate and fear in their hearts. These people are products of culture, upbringing, environment. Slinging insults at them to make ourselves feel superior is wrong. It is wrong to call another human being a name, question their intelligence, or otherwise condescend.

There are always going to be people who hurt us. Hurting them back is never the answer.

Compassion breeds compassion. If you have a right to your opinion, they have a right to theirs. It doesn’t matter who is actually correct. What matters is that we are decent to one another and we show compassion to our fellow human beings with our words and actions.

The only hateful and ignorant comments that I’ve seen today have come from people celebrating marriage equality. I’m very thankful that my Facebook feed is full of people who welcome this much needed change. I’m disappointed that I’ve seen some ugly behaviour from those very same people, however.

None of us is perfect, but, damn it. We can be better than that. Much better. Be nice to other people and live with compassion in your heart.

 

I’ve Got the Botox Flu, and I’ll Get Over You, One Pain-Killer At a Time

So, I re-upped my Botox injections yesterday. It was also my mother’s birthday. I couldn’t visit her grave.  That’s an excuse. I break down when I get anywhere near my church or her grave, so I’ve not been. I can’t bring myself to.

I was thinking about my mother while the lovely Dr. H. yammered on about their being new injection site protocols and how I might notice a difference. I did, but I was too distracted to ask questions. For the past week, or weeks, or months. I dont know… for the past while I’ve been aware of my mother’s birthday.

My mother loved yellow roses, and the colour periwinkle.

This past weekend my husband worked on clearing out some things from our attic. Originally, I was of the impression that we were just making room in our attic for some entertaining space by moving our belongings to the back quarter of the area. Of course he meant to clean some things out as well. Of course. I had even read several articles on attic organization in preparation, all of which included purging the unnecessary accumulations of time. Yet, when he mentioned that he was going to take some things to the dump, I became very upset. I suddenly felt as if the world tilted sideways.

Loss. Mourning. Pain.

I spent yesterday evening was spent with friends, and was it welcome and uplifting. I injected myself with DHE and loaded up full of pain medication and went to my favourite place in town for a meeting, and surprisingly so many of my lovely friends were there.

Today, I am suffering the expected symptoms of Botox. It makes me feel like I have the flu for a day or so, and it makes me really nauseous for a few weeks. Then my nausea will clear up.

One of the things that my mother gave me was the theater community. Now, I’ve found a community to which I belong and I feel like my mother would be happy for me if I could sit down and tell her about it. There are so many things that I hope she knows.

I credit my upbringing for the really good things in my life now.

Loss. Mourning. Pain. Depression. Anxiety.

Dr. H. has added a battery of psychological screening questions to her intake. We agree that I’m coping with this period of high pain levels much better than this time last year.

Dr. H. spent Thanksgiving in Florida.

While she was injecting the back of my neck I thought about being in Disney World with my mother, getting caught in the rain, and buying terry cloth Disney slippers to walk around the park in because our shoes were soaked. They were white, with little Mickeys on them.

Little frogs were everywhere.

 

 

Pink Polka Dot Sherpa Robe Diaries: Brain Free Care Package!

But I Bathed!

When basic personal hygiene becomes an accomplishment for which you pat yourself on the back, you know you’ve reached a level of questionable humanity. I hit that level this time last year.

The first year of my chronic pain condition, or neurological condition, or whatever the hell we’re calling this constant hurt these days… is something of a blur of medical appointments, tears, battles with insurance, and wasted hope. It wasn’t until my first hospitalization at the Jefferson Headache Center that I feel like my journey with this pain began. I could read back through this blog to see what my pain levels were and how functional I was before that hospitalization, but I don’t see the point. If I don’t remember it, it means that it was nothing compared to the hard-hitting come back that my pain made last Autumn.

I was pain free for about three days last year. That’s what I get from my hospital stays, about three days. Hardly worth it now, but when I’m in those three days it’s heavenly. After those three days, however, the pain does this thing that really fucks with my head. It creeps. It lingers at the edges. It pokes at me and prods and plans. After approximately 6 weeks of semi-functionality where I begin to feel like a real, live woman again, the level 10 days start.

From November, 2013 to May, 2014 of last year, I was barely human. I was bedridden. I lived in pajamas unless I had to go somewhere and then it was a huge ordeal to plan my medication so that I could resemble something human. In January, I started having autistic meltdowns on a pretty regular basis. Everything was bad.

Bathing was a huge accomplishment, and for the first time in my life I started leaving the house without bathing.

After May, post-second-hospitalization, and during the sunny, funny size week golden period of semi-functionality… I bathed so very frequently. I showered too. It was wonderful.

Alas, when my brain decided it was done letting me be a person, the personal hygiene glory had to come to an end and I was once more confined to my bed and days of dry shampoo and diaper wipe baths.

Today was Wednesday and I bathed. The last bath I had was on Sunday. I have not showered or bathed in any way in between. I have changed my jammies. I have cleaned my face and kept my hair wrapped.

People came to my house to watch a television show, so I wanted to look like a person.

Bathing is what I accomplished today.

Help My Brain Hate Me Less Campaign Update

Thanks to you, my campaign is at $340.00!!! I know my goal of $15,000.00 is humongous and you are helping me reach that goal with every share and donation. I can’t begin to explain my gratitude!

I’m raising money to help pay owed medical bills, fund current therapies, and cover future treatment costs as well as travel expenses related to my neurological condition. I’ve had to cancel appointments and postpone some treatments because we just can’t afford them right now. We’ve been getting by on a tight budget thanks to my husband’s income, savings, and my disability. Unfortunately, my husband is in a line of work that dies down and becomes unpredictable as the weather gets colder, and our savings have dwindled away over the past two years. We’ve been very blessed to receive help from my family during this difficult period in our lives. Now, I’m reaching out to you, dear internet, and asking for your assistance.

Sharing is a great big help!

If you can donate, I have different donation levels, which may sound silly, because they are all octopus themed. Each level receives different types of appreciation:

Octopus Larva ($5) – Receives a personal e-mail thank you message from me!

Pygmy Octopus ($15) – Not only receives a personal thank you e-mail, but get a shout out on my blog!

Mimic Octopus ($25) – An e-mail, a blog mention, and a thank you on my vlog!

Octopus Lover ($50) – Receives a post card from yours truly with an implied octo-hug!

Octopus Warrior ($100) – Receives a post card, plus I will sing and play my ukulele an dedicate my performance to you on my vlog!

Octo Champion ($250) – Receives a post card along with a hand-made aromatherapy pendant by yours truly!

Mighty Octopus ($500) – A post card, a pendant, and an original work of art celebrating my thanks and feelings!

Octo Deity ($1000) – Post card, pendant, original art work, and of course I’ll dedicate a song to you on my vlog for rocking my octo-world!

I’d like to especially thank the following people who recently donated:

  • A beautifully tentacled Atlantic Pygmy Octopus who made an anonymous donation of $20.00!
  • And my friend Sydney, another Atlantic Pygmy Octopus who donated$15.00. Yes, Sydney, every single bit counts and helps so very much!
Atlantic Pygmy Octopus Donor

Pygmy Octopus Level Donors receive a personalized e-mail and a shout out on my blog, like this one! Thank you Sydney and anonymous APO!!

Thank you!!!!!!!!!

 If you’d like to join me on this mission, click here to visit my GoFundMe page and Help My Brain Hate Me Less.

Shares are just as appreciated as donations!

Chronic Pain, Chronically Hiding

Much has been said about the hidden nature of pain and disorders that don’t show in the body. There are memes galore covering, “just because people with chronic conditions don’t look sick doesn’t mean they aren’t suffering as much as people who do.

Bodies are funny things, the way they trudge along through the world, allowing people with certain very serious medical condition to look pretty as peaches, while less serious conditions can seriously affect a person’s appearance.

Whether the pain that a person lives with is emotional, physical, inside, or out… it takes a toll. Pain causes changes in a person that the casual observer might mistake for exhaustion or a world-weariness. Our loved ones know, however, that the hollowness around our eyes… the pulled look in our face… the smile that isn’t quite right is the pain oozing out of us.

I’ve spoken about my pain on Facebook, and rather candidly so, because I think it is important for me to be honest with myself about who I am and what I am living with. I have said things like, “I try to focus on the good things, because that is what I want to remember when I look back at these years.” I mean it. I don’t want to remember the pain. I don’t want to remember that I stopped taking pictures of myself because I hated the way Botox changed my face. I don’t want to remember the hospitals and the needles and the constant feeling of someone grinding a broken bottle into the left side of my head. Yet, I still think I have to be real about it.

Those are pretty awful things to recall. And, when I really look at myself honestly, they are shameful things. I don’t want you to know how much I hurt. I don’t want to talk about how miserable I am. When I made my vlog about my condition the other day I had to detatch myself as much as possible. When I talk about it… when I think about it… it’s too much for me. It’s overwhelming to think of the amount of pain I am always in. It doesn’t feel like any human could possibly bear this.

And yet I am..

And yet I am.

Here I am, living, somehow. I’ve split myself in two… and I’m in denial most of the time about my capabilities. This is often to my detriment. Frequently, I push myself far too hard. I lie about how I feel because I sense how uncomfortable it makes people.

Today, a fellow sufferer asked, “How are you? Really.”

That’s like chronic-pain-code for, “Fess up, what’s going on. Don’t lie, because my life is shit too. Don’t you dare lie. We suffer and we owe each other to be honest when we can with the people who understand.”

I was honest. I told her all about the shit storm of worries and chaos in my world. The lack of money. The excess of hurt. The constant stress.

She determined we needed hugs and glitter.

You cover everything in glitter when you hurt, because it distracts you from the reality of the situation.

Hi, I’m Chastain. I hurt all of the fucking time. I have no idea how I stand it or how I’m still alive. I don’t want you to see this part of me, so I’m going to turn around, count to three… and when I turn back around I’ll be smiling.

And none of this will have ever happened.

Connection = Humanity

My plan for the day was to work on some vlogs, but it’s freezing, and tea and a shower most definitely have to happen before anyone (let alone a camera) looks at me.

One of the things that has been really important and special to me since I started writing My Brain Hates Me is connecting with you, my beloved readers and fellow sufferers. I love hearing your stories and getting and giving advice. When I have a bad day, you’re there with a kind word. You’re like my own “hang in there” kitten poster.

I try to respond to comments and e-mails and tweets and things in a timely fashion. It doesn’t always happen though. I sometimes go weeks without internet contact because I just don’t feel up to it. When my pain levels are as bad as they are I tend to retreat, and I’m trying very hard not to do that.

For me, it is very emotionally unhealthy to cut myself off from everything, and that is my exact instinct when things are bad. And right now I’m doing the exact opposite. I’m putting it out there for the world to see. I’m talking about my depression. I’m talking about my pain. In my next vlog I’m going to talk about my stupid brain thing that never ends. I’m asking the world for help. I’m doing all kinds of things that are very contrary to my instinct. My instinct is to hide under the covers, cry a lot, clutch my ice pack, and wait for some kind of end.

Maybe this is me fighting. Maybe this is me trying to stay sane. Maybe this is me just doing a better job taking care of myself.

Regardless, keep commenting. Keep telling me to hang in there. Keep telling me your stories. It means a great deal to me. You are precious parts of my life.

Here’s how to contact me:

Twitter: @MyBrainHatesMe

Facebook: MyBrainHatesMe

Tumblr: @BrainHatesMe

E-mail: brainhatesme@gmail.com

Interacting with you makes me feel like a person.

Help My Brain Hate Me Less Campaign Update

I am overwhelmed by all of the insane love and support. Yesterday, my campaign hit $100.00 and today we just crossed the $300.00 mark!

To show my appreciation, I have different donation levels, which may sound silly, because they are all octopus themed, but each level receives different types of appreciation:

Octopus Larva ($5) – Receives a personal e-mail thank you message from me!

Pygmy Octopus ($15) – Not only receives a personal thank you e-mail, but get a shout out on my blog!

Mimic Octopus ($25) – An e-mail, a blog mention, and a thank you on my vlog!

Octopus Lover ($50) – Receives a post card from yours truly with an implied octo-hug!

Octopus Warrior ($100) – Receives a post card, plus I will sing and play my ukulele an dedicate my performance to you on my vlog!

Octo Champion ($250) – Receives a post card along with a hand-made aromatherapy pendant by yours truly!

Mighty Octopus ($500) – A post card, a pendant, and an original work of art celebrating my thanks and feelings!

Octo Deity ($1000) – Post card, pendant, original art work, and of course I’ll dedicate a song to you on my vlog for rocking my octo-world!

I’d like to especially thank the following people who helped me reach that number in the past 24 hours:

  • A fabulous anonymous Mimic Octopus who made a $25.00 donation!
Mimic Octopus

Mimic Octopus Level Donors receive a personal e-mail message from me, a shout out on my blog, and a special shout out on my vlog! Thank you anonymous MO!

  • Jay the Atlantic Pygmy Octopus, who donated $15.00 to help my brain hate me less and never ceases to keep me abreast of important internet happenings!
  • And Dapper Daniel, an Atlantic Pygmy Octopus in the UK who  also donated $15.00. Daniel is one very well-dressed octopus, let me tell you!
Atlantic Pygmy Octopus Donor

Pygmy Octopus Level Donors receive a personalized e-mail and a shout out on my blog, like this one! Thank you Jay and Daniel!!

I’m trying to raise $15,000.00 to help my family with my medical and hospital costs by asking pretty much all of man and woman and other kind for assistance. If you’d like to join me on this mission, click here to visit my GoFundMe page and Help My Brain Hate Me Less. Shares are just as appreciated as donations!

Help My Brain Hate Me Less Just Raised First $100.00!!!

Thanks to your support, my  campaign to raise money to pay for my medical bill is off to a fantastic start! I’m trying to raise $15,000.00 to help my family with my medical and hospital costs by asking ye aulde internet for some assistance. If you’d like to join me on this mission, click here to visit my GoFundMe page and Help My Brain Hate Me Less. Shares are just as appreciated as donations!

You might say, “One hundred dollars is such a small percentage of your goal, why are you so excited?”

Well, let me tell you about what $100.00 can help with in my painful little world. This money will go towards one of the following:

  • Making a payment towards my ever mounting medical debt demon
  • 2 months of  weekly Art Therapy
  • 1 refill of DHE, a medication I take in injection form to lessen the pain at high levels (which is all the time right now, but I may only take it so often.) It isn’t pain medication, and 8 vials cost one hundred bucks just for the generic
  • Prescriptions in general, which range anywhere from $4 to $65 to refill each, not including the DHE
  • Supplements and vitamins
  • Transportation costs to get to my next appointment at the Jefferson Headache Center (which I’m still trying to work out)
  • Doctor Copays

Therefore, I’d like to especially thank the following people who helped me reach that number in the past 24 hours:

  • Lori, the the beautiful Mimic Octopus, with her huge heart and her huge brain and her huge wit, whom I adore. Lori made a whopping $30.00 donation that got me to $100.00 and brought me to tears… because it just means so much!
  • Another Mimic Octopus who made a $25.00 donation and chose to remain anonymous, but whom I care for very much and keep in my thoughts all of the time. We’ll always have Tumblr stash.
Mimic Octopus

Mimic Octopus Level Donors receive a personal e-mail message from me, a shout out on my blog, and a special shout out on my vlog! Thank you Lori and anonymous MO!

  • And a special anonymous Atlantic Pygmy Octopus who donated $15.00- you’re a beautiful little critter who has been a welcome presence in my life and I thank you! Look how pretty your tentacles are!!!
Atlantic Pygmy Octopus Donor

Pygmy Octopus Level Donors receive a personalized e-mail and a shout out on my blog, like this one! Thank you anonymous APO!

Thank you again! And thank you to everyone who has shared my campaign!!!

It is Okay to Say “No” to Treatment Options

I haven’t been feeling well. My 7-10 on the pain scale head days have been frequent and I’ve been in bed pretty much daily. This week I have a super fun cold just to keep things interesting.

I was able to finish out my school term some how. Every functional moment I had was spent working on my research paper over the last month. We have been having some familial difficulties that have been contributing to my stress levels so my meltdown count for for 2014 is really high in comparison to this time in 2013.

My emotions are out of control. My head is out of control. I had to reschedule my last Botox because my head was so bad that driving was unsafe and the idea of having needles in my skin distressed me so much that I cried.

A newish friend is being pushy about acupuncture. She doesn’t really understand what I’m going through and has only seen me dressed, made up, and highly medicated so that I could try to get a little social interaction for once. The isolation is driving me mad. But acupuncture doesn’t seem like the fix, I’ll be honest folks. It just doesn’t. And the idea of sitting still in a bright room with other people who also have needles in their skin really icks me the fuck out. It’s one of those pay what you can places, but they say on their website to expect at least 12 sessions. I have an extremely delicate condition and just taking a bath to get ready to go out makes my head jump up two notches on the pain scale. No… just no.

I politely explained that the needles wouldn’t feel okay to me and when that didn’t work, I made weather excuses. If she continues to be pushy I will just have to put my foot down. I hate needles so very much. The anxiety is so difficult. Botox is a horrifying experience for me and has conditioned me to expect a week of agony and a few weeks of vomiting after the procedure.

I’m sure that acupuncture is wonderful and I know that I should try it but I don’t know that I mentally can try it. And it should be okay for me to make that decision for myself without people pressuring me and trying to make me feel guilty. I frequently encounter people who use statements like, “I promise you’ll feel better if you just do this,” or “if you want to get better you have to start doing this.” Statements like these seem well-meaning, but to me they imply that the person saying them think there is a flip-side… that I don’t want to get better if I don’t take their advice.

I am an expert in my condition and my body and my medication. I am not a doctor or a pharmacist, but I know how my body feels, how my pain feels, things that make it worse, things that make it better, what I have tried and have not tried, and how medications affect me as a whole. I don’t see the neuro-chemical effects past the weird emotional outbursts and constant crying. I don’t know how the Topamax dose I’m on is killing my Kidneys. I just know that I have to drink a lot of water and that things are better for me when they are calm and stress-free.

I know myself and my body and when something hurts and when something is wrong and what I can and can not deal with. And I have the right as a human being to say that I am uncomfortable with acupuncture and although I think it could be a viable treatment method, I am scared of it and the cost and frequency, and I’m not ready to go down that path.

However, I don’t like confrontation… so I’m going to write about all of this in my anonymous sicky blog and not really say it directly to the people I should say it to. I’m so passive aggressive I’m not even going to talk to those people. I’m just hoping that through the magical osmosis of the internet they will somehow get the message. MATURITY!

Hello, Sweetie…

I am having a week where I would very much like to be taken away by a man in a mysterious blue box. Last week I had Botox done again (we keep trying and it keeps not doing anything) coming off one of the worst head months I’ve had since my stay at the Jefferson Headache Clinic. This week I have the Botox sneezes and coughs in addition to the tiny hat o’nails.

Thanksgiving is upon us. It is my first major family holiday without my mother. I really don’t know how it will affect me. I’ve managed not to think about it successfully enough and will continue to do so until my body overrides that impulse. My father-in-law is coming down to spend the day with us, weather permitting, about which I am very pleased. The last few years he and my mother have spent Thanksgiving serving dinner at a shelter together. I think the change of pace will do him well.

Personally, stickler for family traditions that I am, if there is a person who is an integral part of a family tradition and it just hurts to much to do the tradition without them, I think it is acceptable to switch things up a bit. Sometimes it is okay to let old traditions transform into something else so that you have time to heal.

I’ve been trying to get out there and meet new people and to be social. Obviously it’s entirely difficult to do so given my neurological condition, but I have had to fight for a little people contact. Not surprisingly,  I am still not good with people and I find their bullshit utterly exhausting. No, really… utterly exhausting. From their mannerisms to their speech patterns to the way they hold their forks… they are simply unbearable. I am now taking a break from people again I tried. I failed.

Words of encouragement would not be appropriate at this time because my inabilities to deal with people on a shallow social level are a long-term, known issue that will never go away. I am capable of having intense friendships and meaningful relationships, I just suck at the newness. And, frankly, purely neurotypical people annoy me… and people who are anywhere on the spectrum have their downsides as well. There are awesome individuals in this world, but sadly, I only have access to a few at a time. When I do it is amazing.

I shared those last two paragraphs with my husband, thinking them funny, and his response was to say, “Hm.”

Recently he indicated that I might be jaded. While I don’t feel I lack enthusiasm about all things I do have to admit that I am less than excited about meeting people and trying to be friends with them. Most of the time I can tell how it will play out in the first ten minutes. This isn’t to say that I don’t let it play out in the hopes that I am absolutely incorrect. But this is to say that I let it play out and then my hopes are always dashed because my gut, as they say, usually knows what’s up.

I don’t know what I’m rambling about. I’m waiting for Thanksgiving to come so I can cook ALL THE FOOD and then after eat ALL THE LEFTOVERS. And then you know what happens on Friday? CHRISTMAS DECORATING! YAAAY!

See? I get excited about shit. 🙂