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Author Topic: Does anyone here have thyroid issues?  (Read 26469 times)
yewberry
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« Reply #15: October 03, 2010, 12:41:50 am »

How do you deal with the symptoms? Or are yours under control? Also, I wonder if it's harder or easier to regulate while you still have a thyroid? Do you still have your thyroid gland?

I suspect it can be trickier, as my autoimmunity sometimes goes into remission and I go hyper for a while.  This hasn't happened in a long time, though.  At the moment I'm on 150 mcg of levothyroxine (Synthroid) and could probably use a little more.  It's taken several years, but I'm starting to pull out of it a bit.  Wink

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Sorry about all of the questions everyone, but the only people I know who have/had a thyroid disorder were my grandmother and she's been dead for 6 years, and my uncle who I'm not very close with and don't particularly like. I'm not generally the sort to ask for help, so I really appreciate everyone taking the time to talk about this with me.

No worries, and having been through this, I'm always happy to share what I've learned.  You might want to check in with the fab folks over at About.com's Thyroid Disease Forum too.  That's where I started learning about my disease and how to help myself feel better.  Smiley

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I was on cytomel between my surgeries and the first RI treatment, then she switched me to synthroid (is synthroid a T4?). I wasn't aware that some people took them both. I will look into that. Thanks.

That seems pretty standard right after surgery and RI.  I'm not sure why they feel they need to stop all of a sudden after treatment, though.  I seem to do fine with just T4, but lots of people need that little extra boost, especially in the morning.

Brina
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« Reply #16: October 03, 2010, 09:12:58 am »

Lyric STILL has lack of energy issues 2+ years after 6 weeks of radiation treatments for oral cancer. While these were probably more debilitating that Radioactive Iodine, ANY type of radiation treatment apparently cause long term lack of energy. I can't say anything about other issues, but this one, unfortunately, seems to be extremely common.

You know, I hadn't even considered that the radiation could have anything to do with it. When I read about it and spoke with my doctors, all the info I was given said that the possible side effects were all short term, flu like symptoms, possible menstrual disruptions for a few months, maybe a sore throat.  Except for the possibility of developing stomach or pancreatic cancer 40 years from now (I figured I had to risk that one to treat the cancer I had, not a great trade off though). I need to research this some more. Thanks.
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« Reply #17: October 03, 2010, 11:23:48 am »

Hi there! Diagnosed with hypothyroid and low vitamin D last winter. Also a priestess and group leader trying to figure out how the energy stuff works for me now.

Hi Jennet, first, thanks for sharing so much information with me, and for the links! Thycal.org is the only one I've really used. They have a really great and detailed page about the low iodine diet. I will definitely check out the other sites.

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For thyroid cancer, I understand that the standard recommendation is to keep the TSH levels *very* low, because it prevents other potential problems. However, it can't be *too* low, because you do still need some in your body so other chemical processes can work. I seem to remember seeing the recommend range is somewhere between .1 and .2 - but how much sythroid that takes depends on the person. Synthroid adds thyroid hormone to your body, so your own thyroid gland doesn't need to work so hard to produce it - or, for people who've had it removed, because they can't produce it themselves.

(And again, note that the numbers go the other direction from what you might expect: high TSH means inadequate thyroid hormone. Low numbers (within reason) mean you're doing well. The normal range for people without thyroid cancer is usually right around 1.0)

Clearly, this is one area that is confusing for me. When My dr. talks about my levels, she's pretty vague. I thought that TSH levels were supposed to be high, and that the more meds you got, the higher the levels. After talking with folks here, I know that I have to get those numbers and understand them myself.

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Mostly, I don't care. I've long believed in the theory of Health at Every Size - the idea that you can treat your body well, regardless of the number on the scale, and that weight is more complex than we really understand. (Eat less calories than you consume is a lovely theory - but in people who don't have a standard working-issue metabolism, figuring out that number is complicated.)


I always felt the same way. I haven't been what folks would consider "thin" since I was about 14. I've always been good with that. I never did crazy diets or worried about it as long as I felt good. Hell, I've never had body image issues at all until now. These last few months though, I've been thinking that if I could lose some weight, I'd feel better. This may still be true, but I'm beginning to understand that there's much more to it.

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- In tracking my diet, I'm actually finding that I'm eating *way* less than is probably good for me: if I don't pay attention to it, I'm likely to be down around 1000 calories a day, and at that level, my brain starts not working right. I have to actively plan meals and when I'm eating (and have easy-to-make higher nutrition options on hand - cheese is a great one for me, for example) for when I forget, because otherwise I'll just forget, and it'll be 8 or 10 hours since I last ate.

So, I guess one thing I need to do is figure out what I need to eat and when to keep my metabolism up. Maybe seeing a nutritionist would help. My husband is a chef, so I'm lucky that I have someone around who can make great food. But neither of us knows what that food should be. Thanks for the dietary info!

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There are bunch of foods that complicate thyroid stuff or affect medication levels. Soy is a huge one. (Fermented soy - miso, tofu - in small amounts is okay for a lot of people, but lots of it - fake meat products, say - is not so good.) Most of the brassicas are a problem for some people raw (cabbage, broccoli, cauliflower, brussel sprouts, kale, etc.) but not a problem cooked. I don't worry about having these foods once in a while (eating at someone else's home, say), but I only eat cooked brassicas at home, and I don't have soy products at home, period.

This much I did know, thanks to the thycal site. Funny, when I asked my endo. about soy products she said it was fine so long as I waited at least 4 hours after taking my meds. But, I still avoid it as a regular part of my diet.

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Early silvering is a really classic sign of autoimmune diseases (which includes a number of causes of thyroid stuff.) I'm 35, and my hair is brown, but there are swaths of much more salt-and-pepper in there. That siad, I took an initiation name meaning "Silver" about 8 years ago, and so I feel I can't really argue with it. I mostly look forward to being one of those sort of timeless women with gorgeous silver long hair up in a bun. (I have thought about dyeing it, but it looks fine, really, and I don't want to add either upkeep for henna or dye chemicals to my life.)

I actually started silvering when I was 18, So I've been coloring it since then. I have very dark, almost black hair so the silver really stands out. I've got sort of the Lily Munster streaks happening now. Which I personally kind of like. What bothers me are the people (mostly women) who feel the need to comment on it. I know this is a small thing when you look at the overall picture, but damn! How is it okay to be so judgmental of a complete stranger? I mean, aside from the hairdresser who said she'd have to buy wigs, there have been other instances when strangers have made comments about it. Even friends and members of my family have had negative reactions to it. To be fair, many people are very complimentary, but I can't help but wonder why my hair is such a topic of conversation. Not my health or even the scar across my neck, my hair. WTF? The issue of what society expects women to look like is topic all it's own, I suppose.

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If you're not already tracking basal temperature (temperature first thing in the morning, before you even sit up in bed), that might be helpful in narrowing down some cycle information: a number of hypo folks track it routinely because a low body temperature is linked to a low metabolism, is linked to low thyroid, and so the core basal body temperature going up can be a sign you're getting into the right medication range. For women, there's also a pattern of temperature shifts around ovulation that can tell you if you are, and if so, when. Problem is, you usually need to track for a couple of cycles to be sure of the patterns.

I haven't been tracking my temperature. I do keep track of when my periods come and for how long they stick around. I will start doing this. Thanks

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When I started recovering, I sat down with two of my favorite community elders to talk about some of this. (I'm a 3rd degree in my tradition: they were the HP who trained me and his husband, with lots of experience in a different tradition, and I wanted to pick their brains.)


Okay, here's where I'm sort of in a pickle. I don't have any brains to pick (except for you all). I've always been solitary, no tradition or formal training. On the one hand, this is good because I don't have any students or other people relying on me. But on the other, everything I've learned has been on my own, through books, forums, trial and error. So I do have some questions. The disconnect that I mentioned. I'm having a hard time articulating exactly what that feels like. It's kind of like I'm just going through the motions. I can maintain daily devotions to my Goddess. It comes very easily and is part of my daily routine. But when it comes to raising and directing energy for a particular goal, I can't hold on to it. It's literally feels like water flowing through a filter. I can't maintain it. I hope that makes sense.  Are there exercises I can do or techniques I can practice to help with that?  It's never been a problem before, or at least not since I started out 20 years ago.

This has been a pretty big issue for me. I'm sure it sounds strange, but I feel incomplete somehow. Ugh, I wish I could explain this better.


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« Reply #18: October 03, 2010, 11:38:34 am »


I just wanted say thanks again to everyone. All of the information is very helpful. I'm making a detailed list of things to discuss with my Dr. at my next appointment.  Also, since I'm getting ready for another bout of R.I., she has me scheduled me for thyrogen shots so that I don't have to go off of the synthroid.  I've been trying to read up on this and how it works. This has led to more questions that I'm going to call her about tomorrow. I've read that it can skew the results of a scan, but if that's the case, why use it? Do any of you know anything about it?
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« Reply #19: October 03, 2010, 04:05:47 pm »

I've read that it can skew the results of a scan, but if that's the case, why use it? Do any of you know anything about it?

If I understand what you're asking, the answer is "maybe".  There seems to be some evidence that thyrogen can make it more difficult to detect an increased likelihood of cancer recurrence, but it's my understanding that the risk is slight.  The bigger issue is the trade-off between stopping meds before RI (which makes most people feel like death warmed over in the weeks leading up to it) vs. a slightly decreased test accuracy (but feeling like a human being during that time).

Personally, I know how I feel without my meds, and I'd almost rather die than live like a zombie for a month.  I'd take thyrogen in a heartbeat if it allowed me to maintain some semblance of a normal life. 

Brina
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« Reply #20: October 03, 2010, 04:12:46 pm »

I just wanted say thanks again to everyone

As do I.  My best guy pal had his thyroid removed a week ago due to cancer and this thread has been most helpful in understanding some of the things he may go through.

(((Everyone)))
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« Reply #21: October 03, 2010, 04:42:28 pm »

Clearly, this is one area that is confusing for me. When My dr. talks about my levels, she's pretty vague. I thought that TSH levels were supposed to be high, and that the more meds you got, the higher the levels. After talking with folks here, I know that I have to get those numbers and understand them myself.

Yep. (And it is confusing!

The other good thing about having your numbers in your own records, is that as medical understanding changes, you might see more useful patterns. (For example: when we first started doing testing on my thyroid when I was in high school and college, a TSH of 3 was considered perfectly normal, and no one would treat it. These days, a TSH of 3 plus symptoms is cause for treatment. But knowing I wasn't feeling great (and was symptomatic, in hindsight) then made it easier for me to get treatment now.
 
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These last few months though, I've been thinking that if I could lose some weight, I'd feel better. This may still be true, but I'm beginning to understand that there's much more to it.

Yep. That might be true. But it might also be that something else might make you feel better that isn't directly related to weight. (Getting more exercise or general movement, getting food habits that suit you, etc.)

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This much I did know, thanks to the thycal site. Funny, when I asked my endo. about soy products she said it was fine so long as I waited at least 4 hours after taking my meds. But, I still avoid it as a regular part of my diet.

Yep. I'd be less concerned about the thyroid side of the soy than the estrogen effects since your cycle is still off. (Which is part of why I'm avoiding it: why make things more complicated than they need to be?)

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I know this is a small thing when you look at the overall picture, but damn! How is it okay to be so judgmental of a complete stranger? I mean, aside from the hairdresser who said she'd have to buy wigs, there have been other instances when strangers have made comments about it.

People are weird, aren't they? I actually mostly don't get comments about it, but when I do, I go for the genuinely puzzled. After all, it's my hair, I like it, a fair number of other people like it. I'm all for genuine questions ("How do you put it up like that?" or "You must like the silver, but have you thought about dyeing it?") but not the ones that assume there's only one way to be.

Also, there's a bit of me that really loves the look on someone's face when they ask something making it clear they don't think the silver is pretty, and I answer in a way that makes it clear that I think it is.

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So I do have some questions. The disconnect that I mentioned. I'm having a hard time articulating exactly what that feels like. It's kind of like I'm just going through the motions. I can maintain daily devotions to my Goddess. It comes very easily and is part of my daily routine.


Yep. This is very much where I've been for the last 6-9 months. Other stuff I do, in case it's helpful:
- Having a shrine up (with items relevant to ongoing goals.)

- Using music playlists to help focus my attention (seasonal, specific goals, elemental focuses, stuff like that.)

- Doing seasonal work, and cottage-witch type stuff that doesn't involve collecting energy and focusing energy (more on this below.)

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But when it comes to raising and directing energy for a particular goal, I can't hold on to it. It's literally feels like water flowing through a filter. I can't maintain it. I hope that makes sense.  Are there exercises I can do or techniques I can practice to help with that?  It's never been a problem before, or at least not since I started out 20 years ago.

I've been thinking about this one a lot myself, so let me see if I can put my current theory into words.

1) Where's my brain at, anyway?


I was having a lot of trouble with executive function and cognitive skills when I was at my worst. I was also having a lot of trouble holding multiple things in my head at once (anything from driving in a less-familiar area to cooking a moderately complex recipe, to writing things long than about 500 words). Those things took me a long time - much much much longer than my norms, and they were way more tiring than I'd have thought.

Looking at magical and ritual practice - well, a lot of those same things are involved. A very simple thing - say, stirring love and health into a soup - is fairly simple to hold in your head. But more complex stuff is a lot harder. A full cast circle or a multipart spell has a lot going on in it - a lot of separate pieces that go into making it work.

So, it's really no wonder I found those things very tiring - and very hard to do.

2) Improving background skills
- I felt a really strong internal push to give my brain different kinds of input. Swimming helped - it's a totally different sensation from walking. I've been doing Feldenkrais Functional Integration sessions with a local practitioner (Feldenkrais is a body modality method focused on giving your body choices about movement: I learn a lot every time we do a session, and I get some really great reinforcement about how I'm integrating new information and possibilities.) There are all sorts of other possible answers, but trying something that gave me new sensation to play with seems to have been pretty important.

- I've been learning more about ways to make the stuff that needs to get done more efficient: working on a much clearer and better-structured to-do list system, for example, so that I can rely on it rather than trying to hold it in my head (as I used to be able to do really well.) Some of that is just developing habit: always having the iPod Touch with me, so I can note stuff down when I think about it, and sync it to my computer when I get home, for example.

That's obviously got a bunch of impact on work stuff, but it crosses over into religious stuff: making note of what I want to do in ritual as I think of it, for example, saves me trying to remember it later, and means I can sit down and plan all at once from my notes more easily.

- Likewise, doing a bunch of learning more about how my brain works now, and figuring out ways to support the parts that still feel really unreliable at times. Some of those are executive function skills (and again, because they were always really strong before, I didn't have good coping methods, like some people learned a long time ago...) There's a lot of really fascinating books on how neurobiology translates into work/learning life out there now. (The current one by the bed is _Your Brain at Work_ by David Rock, which has a lot of very practical techniques and ideas.)

And again, I'm seeing crossovers into my ritual life.

3) Simplifying wherever possible
My constant question these days is "Do I really need to spend time and focus on that? Do I really *want* to spend time and focus on that?" If no, I try not to do it.

I want a reasonably tidy house, but I do not need it to be perfect. I want a ritual life that both supports and challenges me, but I do not need every ritual to be complex and all-involving. I am a much happier person when I have lots of reading and writing in my life, but those things do not need to be at the more complex ends of the spectrum right now. And so on.

And then I take the energy I save in other places, and can pour it into particular projects.

4) But some of that is also ritual:
I have, through the trad practice, a structure to ritual that I don't have to think about anymore:

- I start going, and I automatically know what the next thing is. Building up a stable framework for practice - at least for the time being - might be worthwhile. (You might need to do it over a period of months, though, before you get it to being second nature.)

- I don't *need* to use many tools, but using them helps remind me of what energetic state to shift into (I pick up the athame, and it's different than picking up the wand...)

- And while I generally prefer to improv my invocations and other stuff in ritual (except for rituals where precise wording is important : trad initiations, for example), these days I do usually have at least brief notes on what I wanted to do, so that if I forget, I've got a reminder.

5) Changes over time:
The last few weeks, I've seen another big jump in the cognitive skills coming back - yay! That means that I'm giving it another week or two (to try out those changes in other settings - writing, creative projects, a few new cooking experiments, etc.) and then do the following:

- Go back to looking at the basics again. Not because I need to relearn them, precisely - my intellect still knows them - but because I need to figure out what they feel like now in my body, and what moving energy feels like now. Some things are clearly harder than they used to be - but some things also seem a bit easier.

I've obviously got the trad notes, but I think I'm going to prefer to work through other sources. (in part because I'm more inclined to try and assume I know what I'm doing with the material I know really really well.) I'm probably going to start with the exercises in Diana Paxson's _Trance-Portation_  and then go from there.  

- Keeping really careful notes of same - what's working, what isn't.

- And trying out different kinds of things - what happens when I try X magical technique? What happens when I try Y? I'm at the place now where I can at least draft out those lists and start trying things out as situations where they make sense come up, which is more than was true for a while.

- And then circling back to it in a month or two, because as the health changes, and the energy level changes, and so on, those things may change too.

- Ideally, I want to spend some time with someone who knows my patterns of old, and can give commentary, but for various reasons, that's a little more complicated right now. (In your case, your husband might be able to give some feedback?)
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« Reply #22: October 04, 2010, 02:51:47 pm »



Hi, I am hypothyroid.  And have some slight adrenal issues that are tied in somehow.  The whole thing seems to be tied into menopause too.  Anyone who tries to take my thyroid medication or adrenal medication away had better be prepared to die.  And the doctor who kept giving me shit about exercising when getting out of bed in the morning was exhausting can go f**k himself.

You really have to educate yourself (lots of good info at  http://www.stopthethyroidmadness.com/  ) and be your own advocate with your doctor.  Because many of them just don't get it.  Good luck!



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« Reply #23: October 04, 2010, 06:52:06 pm »

I always felt the same way. I haven't been what folks would consider "thin" since I was about 14. I've always been good with that. I never did crazy diets or worried about it as long as I felt good. Hell, I've never had body image issues at all until now. These last few months though, I've been thinking that if I could lose some weight, I'd feel better. This may still be true, but I'm beginning to understand that there's much more to it.
If you're interested, I can give you links to lots of Health At Every Size and body/fat-positive sites.  I feel like my own comfortableness with my fat is under constant siege by socially-mandated body ideals and cultural constructs about weight and health, and I've been mostly the same size my adult life; I can really see where a significant rapid change can leave you a lot more vulnerable to the social pressures.

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« Reply #24: October 05, 2010, 09:23:29 am »

Personally, I know how I feel without my meds, and I'd almost rather die than live like a zombie for a month.  I'd take thyrogen in a heartbeat if it allowed me to maintain some semblance of a normal life. 

Brina


Yeah, I really don't want to go through that again. I'm not feeling normal yet, but I'm much better than I was before the synthroid. I did some more reading about thyrogen, and I'm going to take it. October through January is really busy for us with all of the holidays, lots of birthdays, family stuff, etc. I really don't have the time to go off of my meds, then wait for them to kick in again.
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« Reply #25: October 05, 2010, 09:30:33 am »

As do I.  My best guy pal had his thyroid removed a week ago due to cancer and this thread has been most helpful in understanding some of the things he may go through.

(((Everyone)))

I wish him all the best. From what I understand, treatment plans can vary based on what type of cancer it is. So hopefully, his is one of the easier to treat. I actually feel lucky in that, while mine isn't the easiest to treat, it's also not the most dangerous.
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« Reply #26: October 05, 2010, 10:04:07 am »

Yep. (And it is confusing!

I can't tell you how much better I feel knowing that it isn't just me. Not that I'm happy anyone is dealing with this sort of thing. But, when you have doctors saying that nothing is wrong, it's good to know I'm not just crazy or being lazy. I really appreciate all of the great advice you've given me. I think "keep it simple" is going to be my mantra for a while longer. I do think I've been pushing myself to be the "normal" that I used to be,
instead of focusing on what I can do and what works for me now.     

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- Ideally, I want to spend some time with someone who knows my patterns of old, and can give commentary, but for various reasons, that's a little more complicated right now. (In your case, your husband might be able to give some feedback?)

My husband isn't really all that involved in my practices, but he does sort of keep an eye on what I'm doing and when.  He's really cute about it sometimes. For example, about a month ago he brought home some figs from a catering job because he thought I might like to offer them to Juno. Even at the last full moon, I was feeling kind of crappy due to my cycle being out of whack, he insisted that I go outside with him and just sit for a bit. Not because he really cares about the moon, but because he knows that I do. So yeah, maybe he would be able to give me some feedback.
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« Reply #27: October 05, 2010, 10:15:39 am »

Hi, I am hypothyroid.  And have some slight adrenal issues that are tied in somehow.  The whole thing seems to be tied into menopause too.  Anyone who tries to take my thyroid medication or adrenal medication away had better be prepared to die.  And the doctor who kept giving me shit about exercising when getting out of bed in the morning was exhausting can go f**k himself.

You really have to educate yourself (lots of good info at  http://www.stopthethyroidmadness.com/  ) and be your own advocate with your doctor.  Because many of them just don't get it.  Good luck!

Thanks for the link!

My endo. told me the same thing! Work out first thing in the morning. Sorry, I've got to have some quiet time after the hubby goes to work and the boy gets off to school before I can even think of physical activity.
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« Reply #28: October 05, 2010, 10:24:31 am »

If you're interested, I can give you links to lots of Health At Every Size and body/fat-positive sites.  I feel like my own comfortableness with my fat is under constant siege by socially-mandated body ideals and cultural constructs about weight and health, and I've been mostly the same size my adult life; I can really see where a significant rapid change can leave you a lot more vulnerable to the social pressures.

Sunflower

Yes, very interested. Not just for myself either. My younger sister could use them as well. She's constantly dieting, and on the weight loss and gain roller coaster. I think it's sad because she's a very smart, talented, beautiful woman, she just doesn't see it because of her weight.
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yewberry
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« Reply #29: October 05, 2010, 10:44:41 am »

Work out first thing in the morning. Sorry, I've got to have some quiet time after the hubby goes to work and the boy gets off to school before I can even think of physical activity.

Man, I'd love to be able to every day, but I have to be at work by 8:00, and I've got a 45-minute commute, and my workouts are currently 45 minutes to an hour every day, and I really need a shower after, and I'm none too keen on getting up at 5:30 every morning...well, you get the idea.  Most of my workouts end up happening in the evening.  There's been a surprise bonus, though:  I swear I sleep better when I work out right before bed.  All the experts say that working out so close to bedtime throws off your sleep cycles.  I'm finding it's just the opposite, and now I need to work out a little before bed just to wind down.  If I do work out in the morning, I usually hop on the elliptical again in the evening, even if it's just for 15 minutes, to help me sleep.

Brina
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