running update: 23 months September 22, 2013Posted by mareserinitatis in family, older son, running.
Tags: health, medication, Mike, running
I went for a run today for the first time in a month. It was nice, particularly since I could actually feel my feet the whole time.
Yeah, that sounds strange, doesn’t it?
I haven’t run the past month because I ended up in the hospital. Some of you may recall that about a year ago, I had a bad reaction to some medication. Some of my doctors have been dubious that this was the case, however, given the reaction was extremely rare. (By extremely rare, I mean I-managed-to-find-a-whole-three-medical-case-studies-on-pubmed rare.) I was given the medication again, and this time I had a similar reaction, only it didn’t stop when I stopped the meds…and I ended up spending some time in the hospital. Some of my (two) readers may have noticed I didn’t post much a couple weeks ago. That’d be why.
As an aside, while the hospital food wasn’t all that bad, I was very ticked that they put me on a ‘heart healthy’ diet despite my complete lack of metabolic disorder. I suspect I may have gotten some gluten contamination while there, as well. My husband has been informed that any future trips to the hospital will require him to cook and bring me food, which he thankfully said he’d do…although it may just be a lot of gluten free egg rolls and scrambled eggs. :-)
The good news is that things are getting better…I can stand long enough to teach my classes without getting dizzy and, as I said, feel my feet again…most of the time.
Needless to say, this is putting a bit of a damper on my race plans. I had planned to run a 10k next month with the older son, but I’m trying to take it slow. I’ll probably just try the 5k. I was initially rather upset that I’ve been running for almost two years now and am having to start over. However, after my run this morning, I came to an important realization: I ran more than I had planned because it felt good to get out and move. My body knows what it’s doing now, so I’m really not starting over…just giving myself some space.
The difference a diagnosis makes August 6, 2013Posted by mareserinitatis in food/cooking, societal commentary.
Tags: celiacs, cooking, food, gluten, gluten free diet, health, low-carb
I’m almost upon the 1 year anniversary of receiving my official diagnosis of celiac’s. It’s a happy thing for me because I’m feeling and looking far better than I did a year ago despite the fact that I still have a ways to go. I’m still waiting for my ability to digest peaches to be restored.
To celebrate, the FDA has just released new regulations stating that gluten-free items must have under 20 ppm of gluten. (Coincidence…but they were supposed to have come out with a decision on this
months years ago.) My friend Kari posted an article about this on FB:
The 3 million Americans with celiac disease and all those traumatized against grain by the Atkins craze a decade ago will soon be shopping with ease. The Food and Drug Administration, after a six-year delay, has set new standards for what food can carry the label of “gluten free.”
It was an interesting article, but their whole ‘gluten-free is just a fad’ undertone got on my nerves. I’ve seen a lot of articles like this (I discussed one at length in this post).
This sort of thing gets on my nerves because for years I had to listen to people tell me how my low-carb diet was a fad and not healthy for me. I went on a low-carb diet at the age of 22 because I had fibromyalgia (*ahem* not really, but I didn’t know that then) and having weight problems. Miraculously, I got better after going on the diet. (Not so miraculous now that I know what I have.) However, the fact that I felt better and lost weight didn’t phase people. I continually heard from doctors how I was going to end up with high cholesterol, how the weight I’d lost was ‘water weight’ (ummm…I’m sure that 80 lbs. was all water), and on and on. I was flummoxed: I was told I needed to lose weight but once I did, I was lectured on how I did it the wrong way. As a side note, the fact that I was no longer in pain and my fatigue had gone away were irrelevant.
Going to any social gathering was even worse. I would be rather careful about what food I ate (and I never felt I was overly picky…just asked them to please hold the bun or whatever), but it never mattered. Inevitably, some stranger would come up and begin lecturing me on my poor food choices. I came to the conclusion that there were really a lot of busy-bodies out there who had nothing better to do than search out people who really weren’t looking for any advice on their diet in order to fill their ear.
I’ve been putting up with this for 15 years. I can no longer count how many times I’ve had to justify to ‘strange’ dietary choices to people. And the funny thing is, they never want to hear how as a vegetarian/vegan or on a normal diet, I actually grew sicker. (Celiacs, it turns out, impairs the body’s ability to digest protein.) The implication was that I must not have been doing it ‘right’…whatever that means. The fact that, in the last few years, it wasn’t working was an additional reason for people to come out of the woodwork and criticize my choices…nevermind that what they were telling me was exactly the wrong thing to do.
Now that I have the magical diagnosis, it’s amazing how differently people react. I always bring my own food with me to social things. If someone asks, I just say I have celiacs. Rather than telling me how unhealthy my diet is, I most often get the observation that I am eating very healthy. No one grills me about why I eat the way I do or tells me that I’m making poor choices anymore, but they ask questions about how I handle it and what things I need to look out for. Occasionally, I will get comments about how they know someone who has celiacs, as well. In fact, in the past year, I have had ONE negative comment about how gluten-free diets were a fad…and that person was obviously so woefully uninformed about that (and several other topics) that I didn’t bother wasting too much brainpower on him.
This has me stunned. The reason why I’m stunned is because I’ve hardly changed my diet at all. It was very easy to transition to gluten-free because all I really needed to do was cut out a slice of bread or a dessert here and there. (Okay, so I did have to cut out my favorite Chinese restaurant permanently, and I do have to buy all gluten free soy sauce, which is a bit of a pain.) Most of my diet was already protein and vegetables, and I’ve really found that sticking with that has been pretty easy as I’d already been doing it for 15 years. The only major difference I’ve noticed is in people’s perceptions.
This is why I get frustrated when I see these judgmental articles about how people who are doing things ‘gluten-free’ or ‘low-carb’ are just following a fad. I don’t suppose it’s ever occurred to the writers of such articles that food can have a profound impact on how your body feels and that, just maybe, some people really are paying attention to that. People don’t like to be sick or fat or tired all the time, so if they say something is helping them to feel better (particularly when 40% of people with celiacs have no symptoms), then I’ll cheer them on for making healthier choices.
New year’s…ahem…goals, Pt.1 January 1, 2013Posted by mareserinitatis in personal, running, younger son.
Tags: goals, health, new years day, resolutions, running
It’s very easy at the end of every year to look at the numbers on the scale and feel disappointed that they aren’t smaller. Or I can take measurements of my body and be upset that my diameter is definitely not where it should be.
It’s frustrating to me because I watch my diet fastidiously and am very physically active (well, when I’m not in front of the computer). But here I am.
Granted, this year has been been better than most as a result of my celiac diagnosis. I’ve been on the diet about 4 1/2 months, and it’s unbelievable the amount of positive feedback I’ve gotten about how much better I look. So obviously things are going well on that front. However, progress, as always is slow.
I also am not one to make resolutions as they can be easily dropped. So instead I set goals.
I never try to set the goal of reaching a certain weight or size. It turns out that since I started the celiacs diet, I haven’t really lost more than about 5 pounds. However, people tell me constantly that I look it. And, from what they’ve said, they think I’m lighter than I am. Mike has made the observation that I appear to be denser. However, after that comment almost resulted in physical violence, he amended it to “more compact”, which was, in my opinion, a more agreeable euphemism.
My goal, therefore, is to continue to improve my health by watching my diet and running. (In fact, I have already signed up for a half-marathon in May.) I am hoping that my efforts toward these goals will result in weight loss, but I will try not to shoot for a particular number.
There is one thing that makes me sad about my becoming “more compact”. When the younger boy was about 4, I remember him wanting to cuddle on someone’s lap. He decided to try dad’s lap as it had the closest availability. He went and sat down on Mike’s lap…and proceeded to wiggle around for five or ten minutes, obviously unsettled. He got off Mike’s lap, looking disappointed. Then he came and sat on my lap. With just a few minor adjustments, he ended up completely still with a contented sigh.
“Mom, you’re soft.”
I want to be healthy and will work toward that, but I want to be soft enough for little boys to want snuggle on my lap.
Stupid school year August 20, 2012Posted by mareserinitatis in education, Fargo, personal, teaching.
Tags: celiacs, health, running, school, teaching
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I may be in the minority, but I really, really hate the fact that school starts here this week. I’m of the opinion that school should not start before Labor Day and should not go past Memorial Day.
Part of me would like to say that this dampens my productivity, but I’m not entirely convinced of that. I think it just lowers my stress-level to not have to worry about running kids around while teaching and trying to get some research done. I just hate being tired all the time.
Another reason I’m tired is that I’m still not running. I apparently had tendonitis in my foot, and most likely there was no sprain. I’m getting lots of ultrasound and massage treatment. It seems to have improved a lot, and in a couple weeks, I’ll have some new custom orthotics for my running shoes. Then I’ll get to start running again. This is good because aside from helping me from feeling so run down all the time, it does a lot to keep my mood up. I’ve been grumpy for about two months now.
I’m also getting used to being gluten free. It’s not all that bad, but I still can’t eat things with lots of fructose or lactose. Those problems should hopefully disappear as my insides heal up. I just wish I weren’t so hungry all the time.
But in the meantime, I better get finished with tomorrow’s class prep.
I will never attend another bake sale August 7, 2012Posted by mareserinitatis in personal, Uncategorized.
Tags: celiacs, health, IBS
It’s been an exciting couple of weeks for me.
I have had a lot of medical problems…well, most of my life. It got really bad when I went to college, however, and a year and a half after starting, I found out I had fibromyalgia. I was 19 at that point…the youngest FMS patient most of my doctors had ever seen. In an effort to get a hold of my health, I started a restricted carb diet about 3 years after my diagnosis. Low and behold, I went into remission…something else most doctors had never seen.
About 3 years after that, however, I started having GI issues. First doctor I went to said I was just constipated and needed to drink more water. Second doctor thought I had GERD and abdominal tendonitis. Third doctor told me to take beano when I ate. As time went on, however, the symptoms got worse, leaving some doctors scratching their heads. I’ve had tests and ultrasounds on my gall bladder about 4 times, at least 3 cat scans, a multitude of blood panels drawn, 3 or 4 trips to the ER, etc. The one that really pissed me off was the diagnosis of “anxiety producing IBS”. The problem with both IBS and fibromyalgia is that there are a lot of doctors who think that this is all in your head. Problem is, the meds make you feel stupid and careless but don’t do a thing for your GI symptoms.
So I was relieved when I was finally sent to a GI specialist in 2009, about 8 years after my GI symptoms had started. He did another blood draw and did a breath test, and I was diagnosed with small intestinal bacterial overgrowth. Like all my other diagnoses, I was better for about a month after beginning the new medication, in this case a super-duper expensive antibiotic. He also sent me to a pain clinic to load me up with cortizone shots. They helped…for a while.
After moving back to Fargo, I spent a year and a half trying to get into a GI specialist here. My regular doc was convinced I just had GERD. After an abnormal catscan resulted from an ER trip, I finally got in to see him.
This doctor, for a change, has been approaching my issues like a scientist. Rather than saying, “You’re symptoms are consistent with xxx diagnosis,” he’s actually been going in and *looking* to see what’s inside me. He’s trying to rule out everything he possibly can. While I admit I really haven’t been enjoying all the fun dietary gymnastics for these procedures, I finally have an answer.
I probably have celiacs disease. There’s a good chance this has been my problem all along, maybe even being the cause of my FMS. (This is apparently a pretty common misdiagnosis.)
The most frustrating part, however, is not that it’s taken this long to figure out what’s going on. I can understand when so many diseases present so many similar problems that it would be hard to tease out the root of the problem, especially when I didn’t start with GI symptoms. However, the first GI specialist I saw gave me the blood test for Celiacs, and it showed up negative. The information on the test specifically states, however:
A negative result (absence of circulating IgA-endomysial antibodies) does not exclude the diagnosis of dermatitis herpetiformis or celiac disease. Patients with mild gluten-sensitive enteropathy may have a negative result.
I am very disappointed that the first GI didn’t follow up further. Although this has probably been going on for half my life (or more), three less years of problems would’ve been nice. Also, this led me on years of a wild-goose chase to figure out exactly what the issue was. I always excluded wheat as a possible factor because I was told the test was negative, leading me to omit from my diet a lot of foods that I probably could and should have been eating.
In the meantime, I have one final test to confirm the diagnosis and then can start on a gluten-free diet. I honestly don’t anticipate this will be as huge a problem for me as some other people given I’d already spent years watching my carb intake and really enjoy eating veggies. (I just never thought to cut out gluten entirely.) However, I do like a treat now and again, so I’ll be on the hunt for some good gluten-free donut recipes…
Chronic illness July 23, 2012Posted by mareserinitatis in family, personal.
Tags: health, illness
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I’ve had a lot of stuff going on, so the blogging has been light. I also have a lot of things I’d like to talk about, but the blog isn’t the best place to do it.
However, I’d like to throw out some questions. For those who have a family member with a chronic illness (of any kind), I’d like you to comment on how you deal with it. Specifically, how do you handle financial concerns related to treatment costs? How do you avoid feeling ‘trapped’ when helping support the person who is ill? And finally, how do you deal with all the other people who just don’t “get it”? What kind of support have you been able to get and how difficult is it to find?
Please feel free to comment anonymously as I know this is a touchy subject. I’d just like to see what brilliance the intertubes can provide this week.
Am I better yet? June 25, 2012Posted by mareserinitatis in research, work.
Tags: health, illness, surgery
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I had a minor surgery last Friday. The doctor said I should be well enough to go back to work in 4-5 days. I’m at three days now, and I’m getting a bit batty, even though I’m also sleeping a lot more than normal. When I’m awake, I feel like I need to be doing something.
I would be fine with this except that the university has a policy that I can only access the supercomputer cluster from on-campus. I was going so nuts yesterday that I made my husband drive me up there (I was on restricted driving, as well) so that I could do a couple things. I would like to get him to bring me back today, but he’s trying to get some work done, so I don’t know how likely that is.
It’s funny – at least when I’m sick, I don’t feel like doing work and so will take it easy. But here, I’m not sick, I don’t feel too bad, and I just keep thinking about all the stuff I want to get done. At least I have to be home to let the plumber in…I think it’s the only time I’ve been thankful for a plumbing emergency.
I can just imagine what I would be like if I were forced to sit at home for a really long time. I think I’d make everyone nuts.
What are you like when you’re under orders to ‘rest’?
Tags: deadlines, health, time management, working hours
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I’ve been reading with great interest the discussion on work/life balance and all the various issues people have to juggle. In particular, GMP talked about people working ‘regular hours’ versus those who work more erratically. The funny thing is, not only am I dealing with this myself, I’m trying to convince my teenager of this.
When I started college, pre-kids, I had never really learned any study skills. Even though I was taking AP classes in high school, I’d worked in ‘crisis management’ mode through most of it. (Probably the one exception was AP biology…) I’d basically see what was due the next day and do that. I very seldom (if ever) had much difficulty with my homework and studying was pretty much a waste of time because I got everything I needed in class.
You can pretty much see where this is going… (And this is a BIG reason why I’m not crazy about traditional schooling methods.)
Of course, nothing stays as easy as high school, and college was a lot harder. The problem was, no one ever told me how I was supposed to study. More than one of my classmates used the same methods I did (and were equally unsuccessful). I took a year off, working at a job. When I went back, I wasn’t entirely disciplined, but it seemed like I had worked myself into a schedule by having a regular job. This carried over when I went back to school.
Then I had kids…and the need for a schedule was reinforced. You only have kids in daycare during certain hours. And if you’re lucky enough to have a spouse, maybe they aren’t going to be willing to bail you out when you’ve got unmet deadlines. Or maybe they have deadlines of their own.
The question I kept asking is how I could do it all.
At some point, I realized I was chasing my tail and making no forward progress. I could sit and work for 24 hours and still not make “sufficient” progress. I think that view came from high school, too. I used to be able to sit down and finish something. But as you get older, the problems get bigger and more complicated. There are very few things I can sit down and complete in just a couple hours, and most of those are usually brainless tasks.
So there’s another thing I had to come to terms with: I can’t do everything, certainly not in one sitting, and even everything I’m already doing may be too much. Sometimes I have to let things go by quitting them or maybe I just have to put less time into them than I like (which is pretty much everything these days). The important thing I need to ask myself at the end of the day is whether or not I made progress. (I also don’t bother asking if I am happy with my progress because that inevitably leads to me feeling like my efforts were inadequate, which is only counter-productive.)
I try to maximize my potential by doing the most thinking intensive stuff in the mornings. I try to make chunks of time to work on those things as large as possible. (I have a tough time getting focused on a task, and once I do, I need to try to keep that as long as physically possible. Interruptions (aka meetings) are a death-blow to my productivity.) In the evenings, I try to spend time with my kids. After they’re in bed, I try to get a few more things done. When I’m teaching, the night activity is almost always grading. There is absolutely no reason to waste perfectly alert morning brain cells on grading. If I have a choice between getting an assignment graded in the morning so I can hand it back in the afternoon or waiting until the following class session so I can do it at night, I almost always choose to wait and do it at night. Maybe the students aren’t as happy, but my productivity is a lot more important.
I have tried to do other work at night, but that’s more benign stuff like putting together presentations or even planning out my next day (one of the best evening activities). I am far better off getting to bed early than sitting up trying to work on something important and making virtually NO progress. Usually I sit there and work far past the point I’m exhausted, don’t get enough sleep, function less effectively the next day, feel like I didn’t get enough done, stay up late to compensate…and it just becomes a horrible downward spiral. Now that doesn’t mean I can always do things on a schedule, but it usually comes out better when I do.
No, as much as I don’t like it, it’s better just to leave stuff undone and make sure I’m getting enough rest and exercise. The funny thing is, most people don’t really seem to mind. It drives me nuts not having things done, but when I talk to my supervisor (as an example), I’ve just gotten the general feeling that I was making sufficient progress to keep him happy. (Maybe I’m wrong? I hope not…) In fact, both in my own experience and what I’ve heard of others, those who wield deadlines like bludgeons and expect people to work far beyond where they are effective (especially in the face of extenuating circumstances) are generally viewed as bullies. That seems to be the case both in industry and academia.
I am now in the 1% June 6, 2012Posted by mareserinitatis in personal.
Tags: health, medication, transit, venus
I had to go to the doctor for a checkup. While doing the checkup, she asked me some questions as to whether something or not was bothering me. I said yes, and she said she thinks I have an infection. She wrote me up a script for some antibiotics, and I was on my way.
I took the antibiotics on Monday night. As you probably read in my post on Tuesday, I was feeling pretty awful that day. It only got worse from there. I am currently writing up a proposal and got involved in a couple very technical discussions on Tuesday morning. Problem was, I couldn’t follow what anyone was saying. They may as well have been speaking Greek. (The only Greek words I know are the names for variables.) Mike said I seemed rather confused. I tried to go for a run after lunch. Usually my runs are 45 minutes. This time, I had to quit after 20 because my whole body was aching so badly. I felt like I had the flu. By dinnertime, I was feeling tired and weak and a bit dizzy. First I googled the meds I was taking to see if there was any relationship to fatigue. The one place I found that relationship explicitly stated, it said to call your healthcare provider immediately, so I called the nurse.
“The doctor prescribed this medication for an infection, and I think it’s making me extremely tired.”
“Of course you’re tired. You have an infection.”
“But I didn’t even know I had the infection until she told me. I had no symptoms until I started taking the medication.”
“Well, take it tonight and call your doctor in the morning.”
I sat down to eat dinner, and contemplated whether or not to take the next dose of meds. However, my left arm started to feel incredibly cold, and I just didn’t feel right. Rather than going to see the transit of Venus with the local astronomy club, Mike brought me to the walk-in clinic. By the time we got there, my left arm was tingling, and the sensation was moving up my arm. Also, I started having problems focusing and kept blinking my eyes.
The doctor guessed that I was, in fact, having a pretty rare reaction to the medication and told me to stop. He said to wait a couple days, and if my symptoms cleared up, I should call my doctor and let her know.
I went home, glad I decided to forego another dose of the meds. Going to sleep was a problem because now my whole left side of my body was cold and tingling. My arm was the worst, but I could feel pretty strongly in my ear and knee, as well. I was exhausted and fell asleep quickly….and apparently said some odd stuff in my sleep, too.
I woke up this morning feeling better than the morning before, but still feeling like I was moving through molasses. My arm has mostly stopped tingling, but I did have off and on sensations of burning or cold in it. And then there were a couple of serious episodes of vertigo. Fortunately, all of this has decreased as the day has worn on, and I’m actually much more awake now than I was this morning.
My conclusion, therefore, is that I better be more careful and NOT make the assumption that a medication is safe. The symptoms I had aren’t as weird as the anti-nausea medication they gave me a few years back (which made me want to crawl out of my skin and then claw out my doctor’s eyes…that was very freaky…and apparently so common they almost never use the medication now), but they were nothing to sneeze at. (Incidentally, sneezing and flu symptoms are also considered dangerous side-effects of this medication.) I guess I didn’t think anything of it because I’ve had to take antibiotics about once a year for various sinus and ear infection-type problems. I really never expected to have any problems…and apparently only about 1% of people do.
Sometimes you don’t want to be in the 1%.
I can’t help feel disappointed that I missed the transit. Episodes like this also make me feel more unsure about modern technology. But I guess when you’re going to lose your faith, you can restore it by looking at images like this: