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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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.

Four Weeks, Three Days

Four weeks and three days. That is how long I have left until my expected delivery date. EDD January 9, 2015. We had our Christmas already. The kids came for Thanksgiving. That’s when I started my leave of absence from work. I was having about six contractions an hour the last couple days at work, with nothing to look forward to in the coming days and weeks except a heavier workload and more stress. Between the stress and physical demands of work, my newly discovered gestational diabetes, and the preexisting problems with my thyroid and, more recently, the fibromyalgia, I was having way too much excitement. When we took the kids back to their dad after the holiday, spending a day in the car, with several stops to use the restroom, all that climbing in and out of the car did a number on my poor, old, abused back.

So here I sit, at home, out of work, having an average of two contractions an hour, still sore from the most recent chiropractor visit, with not an ounce of energy, trying to manage my sugar while being too stiff and sore to exercise, and in total nesting mode with no capacity to bend or stand for very long. Essentially, feeling old and useless while my mother and husband take care of me and all of the new baby prep.

I told my husband in the very beginning that I would have a hard time being pregnant. I didn’t handle it well at age twenty-one, so I knew that halfway into my thirties I would struggle even more. I had no idea that the “arthritis” that set in six years ago would turn out to be fibromyalgia and that there isn’t really anything that I can take, nothing that works at any rate, while I am pregnant. And while I have taken antidepressants off and on since my thyroid issues began at age eighteen, and while they seem to be one of the few treatments for fibro, I am not too keen on taking them while I’m pregnant. So when I first became pregnant back in November of last year (the pregnancy that ended at eleven weeks), I discontinued those drugs and take only my thyroid medicine and my vitamins.

A month ago, I learned about the gestational diabetes. To be honest, I suspected I had it with my son when they told me I was one point short of having to take the three-hour glucose test, and when my son was born at 9 lbs 10 oz. This time, my three-hour test came back one point high, meaning I’m still on the border, in my estimation. But now that I have the tools and information that I need to monitor and control my glucose levels, I am at least relieved that I can probably avoid having another nine-pound baby. That being said, this one is a girl, so she was probably destined to be a little smaller than that anyway. My main concern right now, however, is that with the pain I’m having in my back and the aches from the fibro, I won’t be able to get enough exercise to counteract the increased sugars.

The fibromyalgia is proving to be a bit of a challenge as well. Fibro can usually be eased by staying somewhat active and can flare up with changes in the weather. Isn’t it grand, then, that I am already too sore to exercise and that it has rained three days in the last week. Even if I was able to exercise pain-free, the amount of contractions I was having when I became active was troubling, and the midwife at labor and delivery said I should lay down when I had that many contractions. So exercise is proving difficult. My distaste for activity at this point in my pregnancy could be the reason I had to be induced with my first two. I sincerely hope that the trips to the chiropractor and some rest get my back back into working order. Even though my due date is a full month away now, I’m ready to start jogging up and down the neighborhood to induce labor. At the rate things are going, however, I’m sure this kid will be in grade school before my back feels that good–if it ever does again.

Simply rolling over in bed has become a challenge. Every time I wake up during the night, whichever hip I’m lying on is killing me–the fibro. So I start to roll over, which is painful because my belly is enormous and my back is killing me. So once I get about halfway over, I realize I need to use the bathroom. So I get out of bed, struggle to stand fully upright due to my stiff lower back, get about two-thirds of the way up and begin having a contraction. I waddle-limp into the bathroom to do what I need to do, and then schlump my way back to bed where I have to heave my leg up onto the bed (which seems much higher these days) and crawl into it. I settle onto the side opposite the one I woke up on and readjust all my pillows, and try not to disturb my husband any more than I already have at this point. Usually, one side of my nose is completely stopped up, and I try to blow my nose before returning to bed. I have a box of tissues next to the bathroom sink and one next to the bed. There is a moment after I lie back down when all the stuffiness shifts from one side to the other and in that brief moment, I can breathe through my nose. Once settled in, I almost instantly fall back to sleep, since I’m exhausted from going through this every night and can’t seem to sleep past sunrise. And that’s rolling over in bed.

Did I mention that sleep loss is a trigger of fibro? Well, it is. So is stress. In the last three months we sold a house, bought a house, moved, went to court for custody of my kids (and lost), and spent a ton of money furnishing the new house and the nursery. With the holiday season approaching, I was doing more at work in my job as training coordinator with the hiring of tons of extra seasonal help. Now that I’m on leave, we have the added stress of me not making as much money. I have sick time until my short-term disability will kick in, assuming I am approved. If I am approved, it only covers a percentage of my income, so now we have to watch our spending, which is tough with a baby coming.

My mom came to live with us about a month ago. She isn’t in the best of health, but she helps with the housework, which is such a blessing. With my time off from work, I am trying to get her disability approved so that I can get her taken care of. It has been a slow process. I printed out her application over a week ago and I’m not sure she has touched it. I can’t be angry, because she spends her pain-free time taking care of me and cooking us dinner. When she has pain, she takes meds that make her so fuddle-minded that she couldn’t do paperwork if she tried. I really need to get her taken care of. She needs to see a dentist before another tooth breaks and she needs to see a doctor before her meds run out, but she has no insurance. I have so many appointments this week, I don’t know if we will be able to get her any help before the new year.

On top of all of this, my five-year-old golden retriever is sick and I spent $400 in the last two days on tests and we still don’t know what is wrong with her. Her heart rate is way too low and she is so pathetic and mopey that she just lays on the couch and sleeps all day. A lot like me, if my back didn’t hurt too much to lay on the couch.

So the next four weeks will consist of me trying to figure out how to induce labor while being too sore, stiff and tired to actually implement any of the ideas I come up with. I’ll probably be induced a week after my due date, which is probably for the best, when you consider how far we live from the hospital. In the event of an interstate delivery, I’ll be sure to make a post about it on here for your reading pleasure.

In the meantime, I’ll be in my recliner watching TV, or at the vet with the dog, or in bed trying to get a few more moments of rest (ha ha) before getting up for the day. I’ll be timing contractions, which I’ve been doing for the last month, and I’ll be trying to watch my sugar intake and avoiding things like potatoes and white bread. On a good day, you might catch me walking the dogs in an attempt to trigger more productive contractions. Or maybe I’ll just go up and down the stairs a few times, until I’m too short of breath to continue. Don’t tell my husband that I might try to get him to help me induce with sex. And don’t tell my mom any of this, because she’ll worry (though I’m sure she’s the only one who reads this blog). Hi Mom!