Continuum

Wow, a lot has happened since I started this blog a few years ago. It has been nearly four years since my miscarriage, which I think was about the time I started here. So here is an update on the life of Tracy.

In one year, I should be walking across a stage to accept both an Associate’s and a Bachelor degree. I graduated high school in 1999, and will finally have TWO degrees at the end of 2018. It has been a long road, and I truly could not have gotten here without my wonderful husband.

We now have two more children than we had four years ago. My daughter will be three in January, and my son will be one. My son has OMA (Ocular Motor Apraxia) and a few developmental delays. For a few months this summer, I thought he was blind, but he finally started tracking and making/maintaining eye contact. During those months, I learned so much about the blind/VI community, and made a few friends. I learned a lot about accessibility and advocating for those who need it, whether the individual is your child, your friend, or yourself. For those few months, I obsessed over blind accessibility, Orientation and Mobility, sensory rich toys, the possibility of learning Braille, white canes, and assistive technology. Because that is what I do, I obsess. I fixate on something and learn as much as I can until the feeling passes.

Eventually, I accepted that he could see, and that I no longer had to stress about learning about that particular topic. The timing was convenient, because the fall semester was starting, and I needed to focus on school. Then I had to choose a topic for a research proposal. This would probably be a good time to mention that I am a Psych major. I wanted to research a topic that I was interested in, since that makes researching a topic so much less painful. So I wanted to learn about sensory processing problems. This led me down a trail like this:

SPD–>Part of ASD–>SPD often seen in ADHD–>ADHD, I have that–>Taking meds for ADHD helped my Fibromyalgia–>Fibro is a lot like SPD–>DSM does not recognize SPD as a disorder, but it does include sensory issue as part of ASD–>Is Fibro a lot like ASD?…

It is.

So, that was around September or October of this year. Just a couple of months ago, really. In these last few months, I have learned a LOT about Autism and Asperger’s, Fibromyalgia, Attention Deficit Hyperactivity Disorder, Alexithymia, Affective Spectrum Disorder, sensory gating and habituation, and the Autism Quotient. I have read studies. So many studies.

One study (here) concluded that ADHD and ASD could be one continuum. Just as Asperger’s is considered high-functioning Autism, ADHD could be yet a higher-functioning form, or however you want to say it. Another (here) found a higher frequency of ADHD in women with Fibro. There were others, but what I found was one puzzle piece after another which all seemed to fit my theory. Fibromyalgia seems so very similar to Asperger’s. Dr. Tony Attwood and writer/Aspie Rudy Simone both emphasize the fact that girls on the spectrum present differently than boys do, and so often, they go undiagnosed until much later in life. Most sufferers of Fibro are women. The pattern seeking part of me cannot help but put these pieces together to form a very likely picture of millions of women suffering with an invisible pain disorder that could be the result of living a life with a sensory disorder. Having hypersensitive everything can drive a person batty, especially if those around you just seem to think you are being whiny and demanding, or evasive and unsociable.

I started writing this as an update on my life and fell into my habit of over-sharing my current fixation. Sorry. That is just one of my many charming Aspie tendencies. I will share one more thing with you before I go. I read this thing today about tactile-defensiveness. I texted and asked my husband to read it as a favor to me. Later, after he got home from work, he asked why reading it made him think of me. I told him that was why I needed him to read it. I wanted him to understand that the way I behave sometimes is not a reflection of him or my feelings for him, that it is just my way of coping. I think it helped.

Please comment if you have any thoughts on my ideas in this blog. I will touch again on it at a later date, as I have much more to go into about the neuro-physiological aspect of all of it. Until then, good night!

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Growing up like this

What if I am a little autistic? How could I have gotten to be in my thirties without a diagnosis? I have some thoughts about that.

First, I was a smart kid. I’m not saying that I’m not smart now. But when I was a kid, I excelled at school. Math was the best, but I even did pretty well in spelling, reading, science, anything that grabbed my interest. I was a quick study. So when people said things like, “Don’t do that, that’s rude,” I learned not to do that. I learned the rules. I learn the metaphors. I learned not to take everything literally. I remember watching people’s mouths when they spoke. Sometimes I still have trouble understanding what someone is saying if I don’t. And I remember being told to look people in the eye. I did my best to follow this rule, but I also got confused by it. Which eye was I supposed to look at? Going back and forth was distracting. So I started looking at the bridge of their nose. By this point, who knows what they’re saying to me? Doesn’t matter. I look like I’m paying attention, right? So by being a smart kid, I learned to look and act as close to normal as I could. Changing schools many times over the years didn’t help. I have a feeling that a few teachers and administrators started to get a sense that I was different, but then we would change schools, move to another state, or whatever, and I would get lost again in the shuffle.

The second reason is my looks. I was a cute kid. Adolescence was a very awkward time for me. Glasses and puberty came together in a very unfortunate way, totally demolishing what self-esteem I may have had before. I easily disappeared behind a book during this time. But luckily, by my senior year, I started to emerge from my ugly duckling phase as a pretty decent looking swan. I was thin, a decent height, with muscular legs, and by then I was wearing contact lenses, so no more gawky glasses. As a young adult, I was quite attractive. I could get through the social scene pretty effortlessly on my looks and goofy sense of humor. If I stayed quiet, I wouldn’t look too weird. If I had a couple drinks, my behavior could be dismissed as a result of my inebriation. Once I was comfortable around people, I could get loud and boisterous, but that was forgiven as well. Pretty girls can get away with a lot.

I dropped out of college and met my first husband. I got pregnant. I had my son and got married, and later had my daughter. My marriage was a disaster. He was only with me because of my looks, then only because of the kids. We drove each other crazy, and not in a good way. Depression, rage, suspicion, there were a lot of feelings that I could not cope with. And he could not cope with my seemingly irrational behavior. He lied to me every day since the beginning. My naivety was to blame for the first couple of years, and after that, I was tied to him by our marriage and our son. Divorce, custody fights, and more lies. But I had finally learned that he could not be trusted. Now his words have no value to me whatsoever. I cannot believe anything he says.

I’ve been divorced now for ten years. A decade since I put my foot down and stood up for myself. I have come a long way. Another marriage, two more kids, a diagnosis for ADHD, which explained a lot to me. And I started school again.

But working on a psych degree is another learning process that has brought me to a realization that I never expected to make. I could be a little autistic. In fact, I see Autism in many of my family members. And I don’t think that I am jumping the gun. I am watching and paying attention. I am learning. I am researching. I am fixating, the way I tend to do. And I do say something to my husband every now and then. Sometimes he blows it off, but sometimes it sinks in a little. He brought up what I had said about his dad a few days after I said it. I guess I’ve got his gears turning as well.

I’ve stopped worrying about my looks. I dress to be comfortable and try not to look too odd. I remind myself to shower and brush my teeth. I continue to learn, but I don’t force myself to socialize. Socializing is very anxiety-inducing for me. It isn’t worth the meltdown. I’m learning to move forward. I’m really bad about living in the moment, and I’m trying hard to set goals for myself. I still need help in a lot of areas, but I can accept that. I’m a work in progress.

They may not be connected, but neither helps the other

Alright, so I’ve done an awful lot of thinking on my usual topic in the last few weeks. But I’m going to reach way back and pull up a topic I haven’t discussed in a long time. I have it, my mother has it, and several other relatives and friends have it. It is often considered something that is “all in your head,” even though it is now considered a disability by the government (in the United States). So, what is it? I’m not talking about ADHD this time. I’m talking about Fibromyalgia.

So lets talk a little about Fibro. It mostly affects women, but can affect anyone, at any age. Sometimes it is triggered by some type of trauma. It causes tender points all over the body. It causes widespread pain with no apparent source. It can interfere with sleep, and gets worse when you are sleep-deprived. It can make your mind a little scattered, resulting in what is termed “Fibro-Fog”. It can be improved with exercise, but it makes exercise difficult. There are probably a lot of other things about it that I am forgetting, and it affects everyone to a different degree. In fact, it can affect one person at a different degree from one day to the next. It can be linked to migraines, and may very well be triggered by diet, if not weather.

But consider this. What if I have Fibromyalgia, then I find out that I also have ADHD? So what, you might say. But hear me out. Lets talk a little about ADHD. Attention isn’t only difficult to focus at times, but it is also difficult to break at times; a symptom referred to as hyper-focus. Imagine a child, sitting in church, wearing uncomfortable dress clothes, and he is constantly pulling at his collar or scratching at the tag in the back of his shirt. He can’t focus on the sermon, or anything else for that matter, because the level of his personal discomfort is too high. All he can think about is how much he would like to take off all of his clothes. He is probably dying to get home and do just that, and has no idea what anyone around him is saying or doing. It doesn’t help him to ignore it, or distract himself from it by paying attention to the pastor. Telling him to sit still isn’t going to do anyone an ounce of good. That is what having ADHD is like. For myself, I almost always have my hair in a ponytail, because I cannot stand to have it touching my face. If my hair is down, it usually distracts me, irritates me, and imposes itself into my every waking thought until I can get it tied back. (Don’t get me started on when I get it cut too short to tie back.)

So what does that have to do with Fibromyalgia? Alright, now instead of a little boy with too much starch in his shirt, imagine a middle-aged woman with constant body aches. No matter what she does, if she’s moving or sitting still, those pains are with her. If the barometer drops, so does she, so to speak. She may be in bed all day, unable to bear the thought of getting up and moving around. But what if that woman also had undiagnosed ADHD? What if she is hyper-focusing on the aches and pain without knowing it. What if she could receive treatment, namely medication, for her ADHD, and it would help her focus on something other than the pain? What if it helped her ignore it long enough to start getting a little more exercise? What if the resulting pain from increased activity didn’t keep her in bed the next day? What if treating her ADHD helps solve many of the problems she has with the Fibro?

I know I am not a doctor, or a psychiatrist, or in any way in a position to make such a claim as these two disorders being connected. But what if having one really does make the other one worse? What if having ADHD makes Fibromyalgia that much more unbearable? What if the ADHD is actually causing part of the fibro-fog? Confusion, poor memory, inability to focus, or think straight. All of these leading to depression, which can actually exacerbate Fibro. And all of these things snowballing, making life impossible to cope with one day, even though you may be alright the next day. Maybe because of something you ate or drank. Maybe a stimulant (caffeine) or depressant (alcohol).

As I further my education, hopefully in the very near future, I hope to focus on psychology. I will likely pose this question to my professors along the way, and hopefully get a chance to do a study on it. If in the meantime I have an opportunity to speak with an expert, such as the authors of the book I mentioned before*, I hope that I make the best of it.

In the meantime, I’ll be on here babbling away and repeating myself. As usual.

 

*Driven to Distraction by Edward M. Halloway, M.D., and John J. Ratey, M.D.

Adderall

Today I had my first dose of Adderall. Well, I think it’s a generic, as it says Amphetamine salts on the label. Being a schedule II controlled substance in the US, an original signed prescription is required for the pharmacy to fill it. That means no calling or faxing it in. So I took it in and had it filled. The nice pharmacist man asked if I had ever taken it and I said no. So he proceeded to tell me all the negative side effects, decreased appetite (yes please), decreased sex drive (what’s less than zero?), accelerated heart rate (okay), yadda, yadda, yadda… Oh and by the way, it’s the second most powerful stimulant after cocaine.

Whoa.

What…

So then I was feeling all nervous. First because I was staring him in the eye when he said, “sex drive,” and then because I felt like I was smuggling narcotics by getting my prescription filled. Needless to say, I was a little anxious by the time I got home.

So I’m given 10 mg to take once a day. It’s immediate release, so it takes effect right away and can leave you crashing in a few hours. I had only had a glass of milk and had skipped lunch, so I had it with a couple of sandwiches. It took about 40 minutes to feel it start to kick in. At first I felt a little drugged. It was a subtle version of what I felt when they gave me morphine in the ER for a kidney stone. It started out like a warm blanket–over my head. And even though I never felt like my brain was moving, I had a very physical sensation of my brain settling down, like it had literally been fidgeting and was now sitting still.

I was almost immediately more present. I didn’t feel harried. I was interacting with my daughter. I was finishing things. I had a calm conversation with my husband about–of all things–health insurance. And though that could get anyone riled up, I was able to remember the plans we had talked about, discuss it, articulate my thoughts on the matter, and not once get confused or frustrated. It was great!

My friend and I had made plans a few days ago to get together and color our hair. She came over and I was telling her about it all. (She’s the one with the son who has ADHD.) While we were talking, I started to feel the effects of the med wear off. It was so strange because the impulse control problem came right back. I was interrupting her and going off on tangents. Bless her, she’s a saint. I don’t know how she’s been able to put up with me all these years. She was telling me that she had a friend who was diagnosed with ADHD in college, and how much it changed her life. It was so nice to talk to someone who has had some experience with all this, even if it is second-person. Hell, it was nice to talk to her for so long about anything. Since I quit work, we haven’t had much time to just talk. (And, now we have fewer gray hairs!)

So today was day one. I go see my doctor again in a month. In the meantime, I anticipate that I will adjust to how the Adderall affects me, and won’t get that drugged-up feeling after a while. I can only imagine that she’ll increase my dosage to taking it 2-3 times a day, or that she’ll give me the extended release variety. In all honesty, it’s a good thing I felt it start to wear off (it was a little over four hours) because it was after 2:00 PM when I took it.

Oh, and for anyone wondering why she started me on Adderall, she said that the insurance companies don’t like paying for the newer (or better) drugs at first. They tend to ask what else we’ve tried before going for the big guns. I can say that I trust my doctor and my therapist, and I know they have my best interests at heart. I feel like I might finally be seeing a light at the end of a very long and frustratingly confusing tunnel.

I’ll keep you updated. (I’m sure of it!)