# Ocean's Fitness Log



## theOcean (May 8, 2014)

Now that I'm finally back home: time to finally start this thread! I really do think that keeping track of things on here will help keep me motivated, because nothing makes me feel better than active ways to chart my progress.

I'm seeing a personal trainer twice a week, and now that I've gotten my seton removed he's challenging me to also try exercising at the gym on my own and eventually getting me to three times a week. He's my half-brother so I'm very lucky that he isn't charging me. 

My current goal is to do some toning up, especially with a focus on my upper body, and then getting more stamina through cardio. I also really want to focus on my diet in the hopes that it'll help some of my digestion problems. So: I'm going to challenge myself to drink more fluids (hello, rooibos and green tea!) and add more fibre to my diet and take (most of) the junk out of it.

My diet currently is pretty low-residue, which is okay while in flare, but otherwise gets a bit problematic. I want to work in some healthier snack options, actually get myself to cook and try out some recipes I've been saving, and get some more fruit into my diet. (Hilariously, even as a kid I always loved veggies.) Otherwise, with drinks I'm fine -- all I really drink is milk, water, and tea.

Wish me luck!


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## theOcean (May 8, 2014)

Also, if anyone has a FitBit I'd love to add you. I got one as a gift recently from my mother after I started working out finally.


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## Cat-a-Tonic (May 8, 2014)

I'm glad to see you've started this thread!    And that's awesome that you've got a free personal trainer!  I'm jealous of that!  What types of exercises does he have you doing so far?

I don't have a Fitbit but I'm looking to get a fitness tracker soon.  I've been wading through online reviews of them and I still can't decide which one to get.  I had really wanted an Airo, they sounded so promising, but now it sounds like they're not coming out any time soon.    It was supposed to be the end-all be-all of fitness trackers so that's really disappointing.
http://histalkmobile.com/airo-healt...y-unveiled-calorie-counting-activity-tracker/

So let me know what you think of your Fitbit, if you like it or if there are any parts about it that you don't like.


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## theOcean (May 8, 2014)

So far I'd mostly been doing a lot of stretches and aerobic exercises, as well as some exercises for upper body strength since we had to worry about my seton causing irritation. I couldn't really do anything involving my legs because it would chafe.  So, now that that's finally gone we're finally working our way into cardio, and using the elliptical and treadmill. I'm terrified for when I eventually have to start running, but for now it seems fine and I wasn't even sore after my last session. Tomorrow I have to motivate myself to get some exercise done without him, though!

I could always commute up to Waterloo and steal one for you.  This sounds like it would be pretty amazing, though! That's the one thing I wish my Fitbit would do for me -- track my metrics automatically. It can track them, but you usually have to input them manually. There's no fancy through-the-skin scanning technique, sadly. Although it seems like that's up in the air (sorry) for this, too?

The one I have is the Fitbit Flex! In a lovely eye-scalding green; my favourite.  It syncs to your computer, as well as to iPhone/Android which I really adore since I always have my phone on me, so I can check my stats pretty much whenever. The bonus of checking from the computer is having access to a pretty awesome dashboard, though. (Screencap! Yeah, I am a champ today.)

Using the information you input it automatically calculates the calories you burn throughout the day. It tracks your steps, distance traveled, and it also tracks your active minutes. Sometimes I wonder how accurate the active minutes are, but it may be that my active minutes don't seem as "active" to the Fitbit. You can also manually enter anything that it misses if that happens, though.

It also helps you do the terrible task of calorie counting, which I don't know how to feel about. You can always turn it off or ignore it, of course. But it actually helps you come up with meal plans and shows you the ideal way to lose weight.







Here's my somewhat unhelpful one, since I haven't input anything recently. 

There's also a library of foods that it already has calculated calorie counts for, which is pretty nice! Unfortunately it's very American, so it keeps referencing restaurant chains I've never even heard of here in Canada. There are choices for UK/Europe as well, but, y'know. Canada gets ignored apparently.

Another thing I really like about it is that it has a sleep tracker, which is cool. I have some sleep disorders (insomnia, delayed sleep phase disorder, restless leg syndrome, oh my!) so I really like to chart what it says. You can set the sensitivity of it -- I have to set mine to normal instead of sensitive, because it reads my restless legs as wow, you're awake and burning calories?? That's incredible! Although I guess I technically am walking in my sleep. It tracks the difference between asleep, restless and awake, though. It also tries to track your sleep latency and calculates your "sleep efficiency" based on all this. It's pretty cool.

It also has a silent alarm function, where it buzzes against my wrist to wake me up, which I like. That way I can get woken up without disturbing my SO. 

It also has a badge system to try and motivate you, but it doesn't let you access a list to see what all the potential badges you can earn are! Which I think is a little silly. But it's being updated frequently so I'm sure they'll work it out soon.


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## Cat-a-Tonic (May 9, 2014)

Thanks, that looks like a cool thing - but I know what you mean, I don't really want to track calories manually either.  That's why the Airo looked so promising, I want something that tells me all my data without me having to input anything.  I work in an office and work with spreadsheets & inputting and interpreting data all day long, so the last thing I want to do is input even more data into a personal tracker!  That's probably the main reason I haven't yet gotten a fitness tracker, it's really cool that it can automatically do all that other stuff, but I want it to automatically know what I've eaten and what my metabolic rate is and all that as well.  I don't want a piece of technology that just gives me homework!    Hopefully the technology for automatic calorie counting really will be available soon, whether it's the Airo or some other product.  Technology moves so fast nowadays that I can't imagine it'll be very long before something like that is available, even if the Airo itself never gets released.

So what are you going to do today for your workout without your trainer?  Got anything in mind?


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## CrohnsChicago (May 9, 2014)

Good luck to you! I like this trend of exercise journals going right now! And I'm sure you will do great with the more intense cardio...slow and steady to start off until you get comfortable 

You like the fitbit, huh? I was considering getting a fitbit for a while but I keep reading articles about how the technology just isn't quite where it should be for these and it isn't entirely worth the financial investment and why the market for them is a bit iffy though it seems like everyone now is trying to come out with similar items.

I've been using SparkPeople to track my calories and food (and will be doing that again now that I've started my own journey). It's a web site that you can customize a little bit (even add your own foods) which is nice. I also used to use Prevention Magazine's trackers because I am a visual person and enjoy their pie charts that break things down. But their food tracker is a bit annoying to use so I stopped it.

Following your experience with a trainer will be interesting to me as well since I am officially starting with my trainer next week.


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## theOcean (May 9, 2014)

...I just accidentally closed my tab and lost everything I was writing.  This is the worst feeling.

@Cat: My trainer sent me some ideas! But mostly he told me to do cardio today so it's more of the same. Elliptical, treadmill, pushups. I didn't have too much time to dedicate to it today though, since I had to rush out the door to help my grandmother. But I still managed to get time in for working out today! Very proud of myself. I was also really lucky and no one was in the gym, which was nice.  I live in a condo building so we have two gyms downstairs and it's super convenient.


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## theOcean (May 9, 2014)

@CC: I'm really excited about all these exercise journals, too! I hope we can all keep each other motivated. And yes, I'm definitely going to be careful starting out with cardio! I can speed-walk but that's currently about it, haha.

I do like the Fitbit, yes! There's a few things I wish it did automatically, but it's pretty accurate and it feels awesome when I've managed to accomplish my goals for the day. Hopefully the ultimate fitness tracker will come out soon. 

Sparkpeople sounds almost a bit dangerous for me! I loooove tracking things, so I'm a sucker for every website like that. Even for my day-to-day activities I use HabitRPG, which basically treats real life like a video game and you earn experience points for accomplishing things and establishing habits. I love games so it's right up my alley. Virtual points? I'm in!

I'm excited to see what it'll be like with your trainer, too. It'll be interesting to compare.


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## DeniseE (May 12, 2014)

I love reading about what everyone's doing - I'm just tracking my daily exercise the old fashioned way in a diary at this stage. I love being able to look back over the year and see how much I've been able to progress. 

I'd love to try a personal trainer, but at this stage am just going to classes at a gym near work 4 days a week, pole dancing once a week and a martial arts class once a week. I've decided to track my progress by getting a bio/body scan done every 2-3 months.

Good luck with your training!


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## Cat-a-Tonic (May 12, 2014)

TheOcean - two gyms in your building?  I'm jealous!  Is there different equipment in each gym?  There's a little gym in the basement of my workplace and I'm usually the only person in there, but the downside is that there aren't a whole lot of machines (8 weight machines, 2 treadmills and a bike, and a mat for stretching - and that's it).  I would love if it had an elliptical or an arc trainer or more weight machines.  Anyway, I hope the gyms in your building have more equipment than that so that you can vary your workouts.


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## theOcean (May 12, 2014)

DeniseE said:


> I love reading about what everyone's doing - I'm just tracking my daily exercise the old fashioned way in a diary at this stage. I love being able to look back over the year and see how much I've been able to progress.
> 
> I'd love to try a personal trainer, but at this stage am just going to classes at a gym near work 4 days a week, pole dancing once a week and a martial arts class once a week. I've decided to track my progress by getting a bio/body scan done every 2-3 months.
> 
> Good luck with your training!


Same here! Which is why I'm so excited about having the Fitbit to kind of do that for me. It's nice being able to compare even day-to-day.

And oh wow, even without a personal trainer it sounds like you're doing some really good things for yourself. I have so much respect for pole dancing with how much strength that must require. Go you! 

Also, where do you go to get bio/body scans? I've never really heard of that before.


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## theOcean (May 12, 2014)

Cat-a-Tonic said:


> TheOcean - two gyms in your building?  I'm jealous!  Is there different equipment in each gym?  There's a little gym in the basement of my workplace and I'm usually the only person in there, but the downside is that there aren't a whole lot of machines (8 weight machines, 2 treadmills and a bike, and a mat for stretching - and that's it).  I would love if it had an elliptical or an arc trainer or more weight machines.  Anyway, I hope the gyms in your building have more equipment than that so that you can vary your workouts.


Yep! They're kind of small, but it's nice because they feel pretty private which is what I like. One room has treadmills and ellipticals, and the other has all the weight machines, a bike, and then some mats and more space for people to do stretches/yoga/etc. So while there isn't too much equipment, there's still a decent variety and no one to really hog them.


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## theOcean (May 12, 2014)

Worked out again today! It was gorgeous outside so this time my trainer took me to the garden we have for our condo building. We have two tennis courts out there as well, and he started me out doing laps around them but I didn't last too long. I'm terrible at running, but I can speed-walk all day. We switched to doing a bunch of push-ups, various stretches and exercises to work on my arms, jumping jacks, and then he told me to run as fast as I could around the tennis courts for a bit. It was pretty exhausting, but I managed it and was pretty proud of myself!

After that, we went inside and I went on the bike for a bit. I've been specifically avoiding it because of my fistula, but I found today I was actually able to sit on it without any pain or noticing any irritation afterwards! Getting out that stupid seton made a world of difference.  After that, did some stretches for my core and was finally done. We're making my sessions last a little longer now, and trying to make sure I work out three times a week. I see my personal trainer next on Friday, but I have to work out on my own on Wednesday.

Also working on trying to get more fibre into my diet, somewhat aggressively. I can't tell if it's making my constipation problems better or worse, honestly. It also makes it seem like my Miralax doesn't make any difference anymore, but in case it is I'd be terrified to try and go off of it because then I'd be in even more pain. Hmm.


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## Cat-a-Tonic (May 12, 2014)

I think I remember you said in another thread that you weren't able to take psyllium - but, if I'm remembering it wrong, I just wanted to suggest psyllium anyway if it's an option, since you said you're trying to get more fiber.  Personally, it does good things for me, but it's not for everyone.  Psyllium and oatmeal are pretty much the only two sources of fiber that I can reliably tolerate.

Two gyms AND a tennis court at your condo?  I definitely am jealous!  Sounds like your workout went well!  I haven't ever had a fistula, but I am prone to hemorrhoids and just general booty soreness, so I understand your reluctance to riding the bike!  Glad to hear that went fine though.  Is it a recumbent or ... I'm not even sure the term, regular? Upright? style bike?  I have a recumbent exercise bike which is nice, you can sit back and just pedal and not worry too much about the booty.  For my actual bike, I did invest in a cushy gel seat, and that was well worth the money.  I'm not sure if you're just going to do the bike in the gym or if you're planning to go out for a bike ride outside as well, but if you do, a gel seat is a wonderful investment!


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## theOcean (May 12, 2014)

Cat-a-Tonic said:


> I think I remember you said in another thread that you weren't able to take psyllium - but, if I'm remembering it wrong, I just wanted to suggest psyllium anyway if it's an option, since you said you're trying to get more fiber.  Personally, it does good things for me, but it's not for everyone.  Psyllium and oatmeal are pretty much the only two sources of fiber that I can reliably tolerate.
> 
> Two gyms AND a tennis court at your condo?  I definitely am jealous!  Sounds like your workout went well!  I haven't ever had a fistula, but I am prone to hemorrhoids and just general booty soreness, so I understand your reluctance to riding the bike!  Glad to hear that went fine though.  Is it a recumbent or ... I'm not even sure the term, regular? Upright? style bike?  I have a recumbent exercise bike which is nice, you can sit back and just pedal and not worry too much about the booty.  For my actual bike, I did invest in a cushy gel seat, and that was well worth the money.  I'm not sure if you're just going to do the bike in the gym or if you're planning to go out for a bike ride outside as well, but if you do, a gel seat is a wonderful investment!


Yeah, I tried metamucil for awhile and had someone else on the forum recommend psyllium husk, but, they're the same thing. Instead it made me feel way worse, plus I hated taking it in pill form. I may try and take another fibre supplement though, something that dissolves. Otherwise I've been trying to eat porridge every day and mix wheat bran in, eat multigrain breads and lots of nuts, and eating more vegetables/dried fruits. Also upped the amount of tea I'm drinking (making at least a pot every day on top of my other liquids) but all I'm really noticing is a lot more undigested food in my stool.

Haha, I'll maybe take some pictures of our place one day. We have a nice condo here. I'm spoiled because I live with my mother still at 22. 

Also, I think it's an... upright bike? Also may have had to google through all the different ones to figure it out. I'd love to get my actual bike out, but unfortunately my city isn't the best for cyclists.


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## Cat-a-Tonic (May 12, 2014)

My understanding is, Metamucil is psyllium plus some additives/filler, and the additives can cause cramping or other symptoms.  100% organic psyllium should be easier on you than Metamucil.  I haven't ever taken the pill form of psyllium, either, so I don't know if that would contain additives.  I get the actual husks which I mix a tablespoon of into a glass of water on a daily basis - I think being softened up in the water helps, too.  For me, I can't have hard/crunchy oatmeal like in a granola bar - oatmeal has to be cooked in a lot of water until it's kind of goopy, then I can digest it pretty safely without pain.  I think psyllium must be similar - so, taking it in pill form probably wouldn't work for me either.  Just a thought - it sounds like psyllium is probably not going to work for you though based on your past experiences.

A recumbent exercise bike looks like this (stock photo from google image search):





That's not my exact bike, but I have an exercise bike similar to that at home, and there's one in the little gym in my workplace.  It's kind of hard to see the seat in this picture, but it's more like a chair seat (it's wide and padded with a back to it) and not like a regular bicycle seat.  That style of bike is much easier on my booty and on my tummy than a regular/upright style bike is.


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## DeniseE (May 13, 2014)

theOcean said:


> Also, where do you go to get bio/body scans? I've never really heard of that before.


I'm not sure where you'd get them in the UK, but I've got one at a sports nutrition shop just near where I work. I think it's similar to a Dexa scans. The machines measure a whole heap of things like weight, BMI, body fat, visceral fat, skeletal muscle mass, fat free mass, body water and protein. The results are fun to read.  Here's a link to the machine:

http://inbodyaustralia.com.au/inbody-570/


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## kel (May 13, 2014)

I would not trust anything that isn't a dexa scan. And as far as I know you need a doctor to order the scan for you (may be different in canada)


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## theOcean (May 15, 2014)

So, I ended up hunting down some Metamucil to add to my drinks and made sure it didn't have any additives. Results so far: definitely more bulk, but not any softer and still painful. Restoralax really doesn't seem to be making a difference like this.

I have a GI appointment coming up in June, at least. Going to ask to be referred to an allergist then for food sensitivities since my GP rudely refused me. Hopefully now that my Crohn's is under control he'll be forced to actually acknowledge this constipation issue now.

In the meantime, the only other thing I can maybe try is probiotics again.

I was lazy and didn't work out yesterday, but I'm going to try and work out later today! My SO said he might join me, and I hope he will.


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## Cat-a-Tonic (May 15, 2014)

Have probiotics worked for you in the past?  For me, they seem to worsen my GERD, and if I have dairy + probiotics (like yogurt), then it causes me nothing but trouble tummy-wise.  So I can't really do probiotics myself.

Good luck with your workout later today!  Have fun with it!


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## theOcean (May 15, 2014)

Cat-a-Tonic said:


> Have probiotics worked for you in the past?  For me, they seem to worsen my GERD, and if I have dairy + probiotics (like yogurt), then it causes me nothing but trouble tummy-wise.  So I can't really do probiotics myself.
> 
> Good luck with your workout later today!  Have fun with it!


They seemed to, briefly! But it was when my fistula was still draining and I was still on antibiotics, and it seemed to get an increase in drainage at the time and my GI told me to stop (because probiotics are another thing he doesn't believe in). Now that I'm off antibiotics and my drainage has stopped I think it might be all right, though.

I'm lactose-intolerant so I'm a bit afraid of yogurt. I might try it with enzymes, though, and see if that makes a difference.

And thanks! I haven't worked out with anyone other than my personal trainer before, so it'd be nice to get my SO to join me.


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## Cat-a-Tonic (May 15, 2014)

I'm lactose intolerant too.  I know there are some lactose-free soy-based yogurts and those don't seem to have a negative effect on me.  I think there are coconut milk lactose-free yogurts available too, but I can't do coconut and I think they were quite expensive (something like $2 for a tiny container!).  So there are options.  I even tried goat yogurt once - I can do goat cheese which is delicious - but goat yogurt was horrible.    So disgusting I could literally not even swallow one bite, I kept gagging.  So, my advice is to try non-dairy types of yogurts but stay away from goat yogurt!

Is your SO athletic, does he work out on his own?  I drag my hubby along to the gym with me sometimes (he never goes to the gym voluntarily or on his own), and he's never enthusiastic about it when we're on the way there, but he almost always feels quite good after a workout and lately he's even thanked me for making him go work out with me.  So even if it takes a little coercing, if you can get your SO to exercise with you, I bet he'll feel good afterwards too.


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## theOcean (May 15, 2014)

Oh gosh! I think there's one brand here of yogurt -- IÖGO? That's lactose-free, but it doesn't come in the small containers so I always worry I'm just going to end up wasting it!

And oh gosh, goat yogurt. I love goat's cheese like crazy but that sounds like it's a bit too much for me.  I will stay clear of it!

And haha, no, he isn't athletic at all. He doesn't have any health problems but he's kind of begging for them with the way he takes care of himself -- one meal a day, usually bad, no exercise. So I'm hoping that if I get him to exercise with me that might become a regular thing. I love him dearly but I want him to be healthy, too!

It'll definitely take a bit of coercing, but I'll hopefully succeed.


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## theOcean (May 15, 2014)

Ugh, I thought my Humira arrived earlier but it still hasn't. It's now three days late and I would really like to take my medication, please.


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## Cat-a-Tonic (May 15, 2014)

That's not good, I hope you get your Humira soon!  I nearly ran out of Entocort last month and that was worrying (my GI finally refilled it at the last minute) so I know how frustrating that can be.  I presume you'll flare up or at least not feel well if you go too long without your Humira?  I've never been on Humira myself but I know that obviously it's not good to go very long without needed meds!

My hubby was similar to your SO, he doesn't have health problems and he didn't work out until we actually joined a gym and I started making him go with me.  He knows he should work out, he just kind of hates to do it.  But when I actually get him to the gym, he's very much like me when I'm working out - focused, intense, actually exercising and not just goofing off (I see so many people at the gym doing things like standing around talking, or playing with their phones - drives me nuts!).  So, I hope your SO is focused too when you get him to work out with you.

Yeah, goat yogurt... I guess I would say it had a VERY strong flavor and not in a good way.  You know how goat cheese has maybe a slightly stronger flavor than cow cheese?  Take that strongness and multiply it times about 20 and that was goat yogurt.    It was so expensive too which is why I valiantly tried to eat that stupid spoonful of it even though it was sooo gross.

Do you guys have the Silk brand in Canada?  They make soy milk, almond milk, and coconut milk products and those were the soy yogurts that I tried.  They're not bad tasting at all, I recall them being pretty yummy.  Something to look into if you can do soy.


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## theOcean (May 15, 2014)

I'm in remission, at least, so I'm not too worried about flare... but what I am concerned about is building up antibodies.  I was highly allergic to Remicade, and Humira has been incredible for my fistula and that's really what I've been focusing on because I want it to heal so desperately. If I started to build antibodies to Humira I'd be really upset, though at least I know I'd have other options.

And it looks like my SO just agreed to actually work out with me, so it looks like this might actually happen! Hopefully I can bug him enough to make it a regular thing.

...Goat yogurt is sounding increasingly alarming. And yes, we do have Silk! They actually sell it in the convenience store downstairs, though I don't think they have the yogurt there. I'll keep an eye out for it!


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## theOcean (May 15, 2014)

At the moment my personal trainer situation is a bit up in the air. He's my half-brother, like I mentioned before -- but he's also not someone I really get along with so I'm likely... firing him. He's a know-it-all who gets angry and indignant at just the thought that someone knows more about something than he does. (And he keeps repeatedly trying to tell me how my body works, which he has absolutely no idea about. He also once had the audacity to say he has Crohn's. He doesn't.)

On the bright side: Humira finally arrived at my pharmacy! It should be delivered shortly, which is a relief.


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## Cat-a-Tonic (May 15, 2014)

Yay Humira!  

Oh, I have a brother and he's very much like that, too.  I made the mistake of allowing him to live with me a few years ago - it was horrible, we fought so much.  He listens to a lot of self-help tapes, and back then he was doing a fair amount of drugs (supposedly he's clean now).  So I think he misconstrued what the self-help tapes were saying, and the drugs kind of warped his brain too so the message got all convoluted but to him it apparently made perfect sense.  He would tell me that I just needed to have "autonomy" and "mastery" over my illness and then I'd be fine - he'd go on these long rants that made no sense to me about autonomy and mastery, those were his favorite self-help buzzwords.  At one point, he told me I should look to him to be my "digestive role model" - what?  In a nutshell, he thinks you can basically cure anything if you just want it enough, so I guess in his head I'm sick because I'm not trying and I don't have the autonomy & mastery... or whatever.  He's a whack job and I hate talking to him, I only see him at family functions a few times a year and although he's gotten easier to talk to now that he no longer lives in my house, I still don't enjoy spending time with him.  As my hubby put it, "He's hard to talk to."  He's my only sibling so it sucks, but I have to limit contact for my own sanity.

So I totally understand - while it sounds great to have a free trainer, it's not great if it means a lot of stress for you and having to be around a toxic person.  Hopefully you can take what you've learned so far and move forward with fitness on your own - there are lots of resources on the internet of course, or if you can find an affordable gym with trainers included then there's that option too (on that note, do you guys have Planet Fitness gyms there?  It's $10 a month, it's open 24/7, and you can work with trainers - I've never used the trainers at PF so I don't know how good they are, but I like the place just because it's so cheap!).


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## theOcean (May 15, 2014)

Yep, that sounds exactly like the stuff my half-brother tells me (who also uses). It sounds like your relationship to your brother is pretty similar to the one I have with mine. It's endlessly frustrating and I just don't have the patience for it. He also thinks that I can somehow cure my Crohn's though fitness and diet and then I won't have to rely on my medications anymore, but only if it's from training from him. Blehhh. My family is pretty small, but I'll be very happy not having to see my half-brother anymore. It's a sanity guard for me, too.

I'm not sure if we have Planet Fitness (probably not, I think) but we have a few places in the area and my mom is pretty fit and also works out, so hopefully I can find something with her. And at the very least I could work out with her instead.


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## theOcean (May 17, 2014)

So, I've been having a few bad physical health days, mostly due to the high-fibre diet. I did it to entertain my GP, who believes that the constipation I'm experiencing is just from lack of fibre and rudely lectured me about it -- but instead it made me way worse and caused tearing and bleeding, yay. This is exactly what happened the last time, even with all the liquid I've been drinking.

I'm going to soak in a sitz bath and hope for the best. I'm going to call on Monday and see if there's a cancellation list I can get on to see my GI sooner, because I've been so frustrated with this. I think I may have to bring up the possibility of bowel rest for a little while.

Also got in touch with my neurologist and had to get a new referral because it's been two years since I saw her, but I have an appointment for my migraines (and my restless leg syndrome, I guess!) in June.

I also started reducing my anti-depressant/anti-anxiety medication, Effexor. Also found out that it has a freak rare side-effect that changes hair color, which I've experienced! So, mystery solved on that front -- in the few months I've been on it my hair has gone from a lovely red to a dull brown. Hopefully now that I'm weaning off it will come back.

Hoping to wake up early tomorrow and work out, since I haven't been feeling too well the last few days. I've been sleeping a bit better, at least, which is nice.


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## Cat-a-Tonic (May 19, 2014)

Oh yuck, I'm sorry to hear the high-fiber diet just caused you more trouble.    I hope you can get a GI appointment sooner.  You mentioned possibly doing bowel rest - are you talking about something like EN?  I haven't done EN myself, but I've heard good things, so I hope it works well if that's the route you go.  I hope it gives you enough energy to continue working out too!

That's really weird about medication changing your hair color!  I've heard that sometimes after chemotherapy, people's hair will grow back a different color/texture (like it'll be curly when it was straight before), but I've never heard of other medications causing hair color changes.  That's so odd!  I hope your hair goes back to normal once you wean yourself off of that med!

I hope you're feeling better and were able to work out, too.  Hang in there!


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## CrohnsChicago (May 19, 2014)

Aren't sitz baths the best? lol

I feel for you I struggle with high-fiber diets myself. I just hate the way it makes me feel until I am able to pass. Bleeding is definitely no good though . I hope you can get it all sorted out. 

Do you ever find that light exercise helps with your movements. Sometimes after I am done working out it triggers the need for a bowel movement.

I had no clue Effexor changes your hair color! Really freaky. I've never had an anti-depressant or anti-anxiety med do that before nor had I heard of it.

Wishing you improved health. Hope you can get back on track soon!


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## theOcean (May 19, 2014)

@Cat: Yeah, and now without the metamucil I'm stuck straining again. Can't win! I need to up my Miralax a little bit, I guess. RE: Bowel rest, though: I think I might have to do EN for a bit, yeah. I feel like I have something internally around the sphincter/rectum on the left side that keeps getting aggravated and cut, and I think that's the only way to let whatever it is... heal. I just worry that if then I switched back from EN, it would just happen again because my constipation problem is still unresolved.

@CC: I actually haven't found that exercise makes a difference at all, which is frustrating because I was hoping it would.  I just find I go consistently around 3 - 5PM in the afternoon regardless of what I'm doing, sometimes earlier. It seems more dependent on when I eat than anything else, which makes sense.

And yeah! If you know anyone considering Effexor, definitely warn them. I thought it was this nice, subtle medication but it's actually pretty alarming and supposedly people can get hooked for life on it, too. Very happy to be stopping it.


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## theOcean (May 19, 2014)

I actually worked out today! Sometimes I avoid checking the fitness threads out of guilt until I feel like I have something to contribute, too. Which kind of works as motivation!

I actually had my SO and my mother work out with me today, which was really nice.  I was on the treadmill for awhile, doing speedwalking. I need to start doing intervals where I run a little bit, too, but I'm pretty intimidated by it. I might try adding that in next time. Also went on the elliptical briefly, then switched to weights and doing lots of core-strength exercises and stretches because I have absolutely none.  We'll see how sore I am tomorrow/tonight. It felt good getting back to it, though!

Now going to ruin it by devouring some delicious ribs tonight.

I also forgot about Victoria Day today (I am a terrible Canadian) so I couldn't call my doctors today or hassle my Humira provider. Tomorrow! I also get my sleep study results (finally) this Thursday, which I'm pretty interested in. Before actually doing my sleep they figured from my interviews/forms that I most likely had insomnia, delayed sleep phase disorder, and restless legs syndrome. Time to get that confirmed, and possibly get better treatment for it!


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## Cat-a-Tonic (May 20, 2014)

I'm glad to hear you were able to work out!  How sore are you feeling today?  This may just be me and I may be totally weird, but I actually kind of like feeling sore after a workout.    It's hard to describe, but it's like a "good" kind of hurt as opposed to the "bad" kind of hurt that my illnesses inflict upon me?  Like, it feels healthy rather than unhealthy if that makes sense.  As though I'm healing rather than getting sicker.  I'm probably just weird though!

And don't worry too much about eating ribs after your workout - it is good to eat something high in protein after a workout, as that helps you build muscle.  And if you're not trying to lose weight but rather just get fitter/healthier/more muscle mass/etc, then it's not such a big deal.  It is true that even having a small snack after a workout is likely to negate whatever calories you burned during your workout - but like I said, if you're not trying to lose weight then it's not a big deal.

Good luck with your sleep study results!  I've never had a sleep study, but I've read about them a little bit - it seems to me that if you already have trouble sleeping in your own bed, then surely sleeping in a new place while hooked up to a zillion wires and sensors would just make sleeping that much more difficult - how do they possibly get reliable results while factoring in the fact that you're not in your own bed and you are hooked up to stuff and probably not particularly comfortable?  I can barely sleep in hotels or in my in-laws' guest bedroom, I think I wouldn't sleep a wink if I did a sleep study.  But anyway, I hope you get some usable results from your sleep study and can treat whatever issues they confirm!


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## theOcean (May 20, 2014)

I feel the same way about soreness after a workout! It makes me feel like I did something right and take it as a sign of improvement and it makes me feel really good about myself. I'm super sore today, especially my poor abdomen! I did tons of core stretches yesterday and I'm really feeling it. I can also feel my upper arms a fair bit too from the push-ups and weights I did. I really want to get some strength in my arms because I can't even open a water bottle on my own!

And oh gosh, if I hadn't taken terrible pictures I would post the ones I have of myself all wired up. I had electrodes all glued to my scalp through my hair (which made it feel and smell greasy when it wasn't), an oxygen line for my nose which was to detect my breathing but blocked it in the process, and also more electrodes on my legs and jaw to detect RLS and teeth grinding. Not to mention being hooked up to a circuit board and trying not to pull out the wires! It took me foreeeever to fall asleep, since that's already my problem, and then every time I wanted to go to the washroom I had to ask for a technician to temporarily unhook me. It was exhausting, but I'm glad I did it!


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## Cat-a-Tonic (May 20, 2014)

You'll get arm strength as long as you keep working at it!  I was the same way when I first started working out, I had to have my hubby open jars every time.  It took awhile, but I have some nice arm muscles now, and if I find myself struggling with a jar, I don't let him come in to help.    I'm like, I got this.  So you can totally get some nice arm strength too!  Sounds like a very good start so far.


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## theOcean (May 22, 2014)

Thanks, Cat! That gives me some hope. Yesterday I successfully managed to open a water bottle on my own and my SO was astounded. 

Also, I think I need someone to yell at me if I don't post tomorrow about working out! I was so sore from the core exercises I did on _Monday_ that I was still excruciatingly sore yesterday! It even hurt to laugh. Today it's finally faded so I think I'll be able to do some exercise tomorrow. And I think I really need to, because I can see that I'm gaining weight. I need to cut down my portion sizes and stop eating the same junk my SO eats!

I also got my sleep study results today! They were really interesting, actually. It's been confirmed that I absolutely do have Restless Legs Syndrome and Periodic Limb Movement Disorder, and apparently it was much worse than I thought. I constantly move my legs during the day and really can't stop it, and they're so much worse when I'm sitting and laying down, especially when trying to sleep. But apparently it happens in my sleep, too, which I didn't know for sure. The specialist said that according to my test results, my legs moved on average 44 times an hour, and woke me up 22 times an hour! They were just brief wakings, so I don't remember them, but he says that's why I feel so exhausted all the time, and that I have what's called "fragmented" sleep because of it.

I also definitely have Delayed Sleep Phase Disorder, but the diagnostic tests for it aren't covered by our province's health care. Sleep stuff usually isn't, unfortunately. But it took over an hour, close to two to fall asleep, and even then I was constantly waking up. Apparently from 11PM - 1PM I spent 40% of my time awake. I only started entering a deeper sleep around 3/4AM, and only briefly hit REM around 8/9AM and it didn't last very long. So I basically don't get deep sleep at all and it was mostly all light and not restful. Not to mention much later than a normal persons'.

We're trying to treat the RLS first with Pramipexole, which is also used for Parkinson's. I'm still waiting to get it filled since I have a small local pharmacy that delivers. The specialist also wanted me to go back on my previous sleep medication (zopiclone) to help me get deeper sleeps, but it doesn't help with sleep-onset. I'm hoping the RLS medication will help with that, and then we can try the zopiclone again.

So, interesting things that can hopefully be treated!


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## Cat-a-Tonic (May 23, 2014)

I probably won't be around the forum much this weekend, so I'll yell at you as a pre-emptive measure - go work out and then tell us about it!  

Wow, that is definitely a strong result from your sleep study!  44 leg movements and 22 episodes of waking up per hour??  Goodness, if they can treat that then hopefully you'll feel tons better.  I had a similar shocking result from a test for my GERD - I knew I had GERD but didn't know how bad it was, so they stuck an NG tube in me for 24 hours and tested how often I was refluxing, how long each episode was, how high in my throat the reflux got, etc.  The results were shocking - I had 48 separate episodes of reflux in 24 hours, and the longest episode was over 5 hours long!  About half the episodes reached the top of my throat.  There was other stuff in the results that I'm forgetting.  But anyway, yeah, I can relate to having an issue but not knowing how bad it is, and then being totally shocked when I find out that it's really really bad!  My GERD is better controlled now (it's not perfect but not nearly as hideous as it was), so hopefully your RLS and other sleep issues can be treated better now that you know what's going on, too.  Good luck with the new med!


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## theOcean (May 23, 2014)

Think I'm going to have to do a late-night workout at this rate! I was going to go downstairs and then realized all my stuff was in the wash.

And oh gosh, Cat! Five hours!! That's incredible in the worst way. I'm so glad you've gotten it better controlled now! I get to pick up my new medication tomorrow, so here's hoping it helps!


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## theOcean (May 23, 2014)

Also: small update for soon-to-be obvious reasons:







I was getting numbness in my left thumb recently when I went on my phone, and last night I started getting that plus pain that radiated down my tendon and had to stop... everything, kind of. Saw the doctor and she checked it out and said I provoked tendinitis in my left hand and told me to wear a brace. Borrowed one from my grandmother and I am now going to have to exile myself from the forum for a little!

Moral of the story: don't play too many video games like I did. (Fire Emblem on my 3DS and checking Tapatalk on my iPhone are the suspected culprits.)


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## Cat-a-Tonic (May 27, 2014)

Oh no, Ocean!  How long do you have to wear the brace for?  Are you still able to exercise with it on?  I hope it heals up soon.  Hang in there!


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## theOcean (Jun 1, 2014)

Just as long as the pain lasted! I ended up wearing it on-and-off for a bit over a week, and now I only put it on again if I'm playing games or doing something intensive with my hands. I'm just lucky it wasn't my dominant hand.

I also finally worked out again! I was awful and lazy the last week, and need to get better about that. Definitely notice the difference in my workouts already -- I don't have quite the same stamina, though I'll get back to that again soon. Went on the treadmill for awhile today and started to intersperse speed-walking and running a bit, which was exhausting but a good start. Hopefully I can increase the frequency of running and gradually get used to it. Did some push-ups, jumping jacks, and reverse crunches. My core definitely feels a little stronger since I kept up with core stretches during the last week, at least. Now to just get myself to go down to the gym again in two days from now.

I had an incident the other night. That incident was trying prune juice, and it was a horrible mistake. It affected me as badly as colonoscopy prep and basically affected me for close to 24 hours, and it was awful. Please, love yourselves. Don't make the mistake I did. Don't drink prune juice. (It also tastes and looks disgusting.)

Also, I tried the Pramipexole for my RLS and it failed me miserably. It actually made my RLS about a thousand times worse, and made it be accompanied with pain which I don't normally experience. The result was insomnia, so it basically backfired in the worst way possible. Stopped taking it since. Upside: my normal RLS now seems comparatively manageable! I am going to see my neurologist, soon, though. I have an appointment for the 17th, which I'm looking forward to for both my RLS and my migraines.


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## CrohnsChicago (Jun 2, 2014)

Oh my! All of that for video games? I hope you are starting to feel some relief now that you are giving your hands/wrists a break. 

Congrats to you for working out even with the brace on. I know you were having trouble getting your workouts going for a little bit there. Glad things are turning around 

I didn't even know what was out there to treat RLS. I get RLS pretty bad when on steroids. Any other time it happens and I'm not on meds I know it's triggered by anxiety episodes and I just try to meditate/breathe it out or hit the xanax as a final effort. I personally would take RLS over insomnia for sure. Insomnia has much more harmful effects on the body. I hope the upcoming appointment is helpful to you.


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## theOcean (Jun 2, 2014)

My "giving my hands a break" was more trying not to use my left hand, and stubbornly trying to play video games with just my right.  But yes, my left hand is feeling almost back to normal now!

And honestly, I don't think there's too many things out there to effectively treat RLS. It's either that it's a Parkinson's medication, or it's something like clonazepam or in the same vein as Xanax. Mine's active all day, which isn't so bad as long as I'm not trying to sleep -- but at night it's pretty miserable and causes insomnia. Clonazepam kind of works for it, but it would make me feel sedated and groggy and awful the next day and wasn't worth it at all. Plus: I built up a resistance to it so quickly it was kind of dangerous to continue! It does get worse with anxiety for me too, though. And thank you!


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## Cat-a-Tonic (Jun 3, 2014)

I know it's possible to play video games with just one hand - I have a friend who has a prosthetic hand, and when we were much younger, she got a gameboy and played it all the time.  She would just sort of prop it up with her prosthesis and use her good hand to play.  She is amazing, she can tie her shoes with one hand, put her hair in a ponytail with one hand, etc.  When I first became friends with her, out of curiosity I tried doing those things with one hand but I just couldn't do much of anything.

Ocean, how do you know that your RLS is active during the day?  I ask because I'm fidgety most of the day, like I move my legs a lot but I never thought about it being RLS.  Sometimes I do get jolted awake and/or have to move my legs when I sleep, but not super frequently (maybe a few times a week?).  So I don't know, I'm probably just fidgety?

Good luck with getting to the gym 2x per week - you can do it!


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## theOcean (Jun 5, 2014)

Oh gosh! I remember I had a similar experience, except it was that in one of my classes we had a student who was ambidextrous. I remember all of us trying to teach ourselves to use our non-dominant hands... to some extent, it worked, but definitely needs a bit more practice.  Has your friend seen some of the amazing controller mods people have made? I can't remember the name of the person who made them, but there was someone who had a professor with one hand and they made a one-handed controller just for them!

And oh gosh, for me it's pretty obvious that my RLS is active. I'm constantly moving my legs, jogging them on the spot, bouncing them in place. I used to just attribute it to my anxiety until my anxiety went away and my leg movements didn't -- plus it's in my family. When I've looked it up it really varies, though. It seems to wax and wane for some people -- it's active for months at a time and then it won't be, but mine never really goes away.

Getting jolted awake may be an indicator of Periodic Limb Movement Disorder, which 80% of people with RLS have (but not all people with PLMD have RLS), and I do too. It specifically only happens while asleep. So that might be something you have! You'll have to ask your hubby to keep an eye out for it. It could even be something as unnoticeable as twitching, though. For a diagnosis they say it usually has to be at least 30 movements a night, and wakings are common for people that have it, though they're not always remembered.

Could also be that you're just fidgety, though. For your sake I hope it is.


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## theOcean (Jun 5, 2014)

And I did actually make it to the gym a second time this week! I went on Tuesday, and the gym was thankfully empty again. I ended up blasting Welcome To Night Vale from my iPhone to keep me company, which was odd if not interesting material to work out to.

I went on the treadmill but didn't last as long as normal, but it was because I was trying to get myself to run a bit more! I did 1 1/2 minutes of speedwalking (4mph) and then would do 30 seconds of running, and would continue cycling like that. I know it's going to take awhile, but I'm determined to get myself used to running! Otherwise I did my regular stretches: push-ups, lunges (need to do more of those), reverse crunches... My core was still so sore from Sunday that I couldn't do the crunches for long, though. Still managed quite a few of them!

Also tried to focus on some weights for a bit, too. I'm pretty wimpy still so I was working with the 5 pound weights and then switched up to the 8 pound ones after. I think I'm going to continue trying to build myself up to higher weights that way. I'm feeling it in my arms today, though, so I did something right!

Also contemplating getting one of those hand grippers to work on my hand strength. My dad has one but I know I can't borrow it from him since he's a work-out nut and uses all his equipment all the time.

Otherwise, I've been trying to focus on my diet. I've been trying not to eat my SO's junky food anymore, and I've stopped buying snacks for myself. I need to find some healthy replacements for during the day, though, because I do still get hungry... I might try and see if I can make myself some gomaae or maybe some bento sides that I can just snack on without feeling guilty. I really, really enjoy Japanese cooking (despite not eating seafood) so I've been trying to hunt down some recipes and try making more of the cuisine myself!


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## Cat-a-Tonic (Jun 5, 2014)

Yay, I'm glad to hear you had a good workout!  Don't worry about being "wimpy" though.  Everybody has to start somewhere, just concentrate on yourself and don't worry about labels or stuff like that.  As long as you keep going with it, you'll improve your strength.  I started out totally "wimpy" too, I had pretty much zero muscle mass and had to build myself up almost totally from scratch.

On that subject, if you still think of yourself as "wimpy", change that around and think of yourself as super-intelligent instead.    I read an article in the news recently, the gist of it was that scientists now think that perhaps we evolved to be less strong than the other great apes because the development of our complex brains took metabolic priority over the development of our muscles.  So as a species, we're smart but naturally rather wimpy!  

I don't know a lot about Japanese cooking, but I imagine that it's fairly limited if you don't do any seafood!  Do you do seaweed/nori?  And I would imagine you'd use a lot of rice, miso, and tofu - but I can't think what other ingredients would be options for you.  Eggs?  I'm not much of a cook so it'll be interesting to hear what you come up with!


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## theOcean (Jun 5, 2014)

Huh, that's pretty interesting about that article! I guess we're all a bunch of wimps, then.  I definitely feel like I've been improving since I started working out, though! Just noticing little things, like opening bottles easier, or not having as much difficulty lifting weights or my own body-weight.

And no, I don't do nori, actually! I've tried it a few times, but even if I pull it off of onigiri I can still taste it and it still bugs me. I wasn't raised with seafood (my grandmother was allergic to it), and even now it's still really off-putting to me. But yes -- lots of rice, miso, tofu, egg... I've been trying to learn how to make more vegetable dishes, to start! I picked up ingredients for gomaae today (green beans to blanch) for a healthy snack and/or side with dinner, as well as some purple sweet potatoes for daigaku imo, which I made the other day and it was delicious. I had it once years ago at a Japanese restaurant, so I was so excited when I found a recipe for it. It's practically candy, but has the illusion of being healthy!

Honestly, I've only ever really baked before, so this is the first time I'm really getting into cooking! I usually just leave that to my SO. But I'm much more open to trying things than he is (and eating healthier things), and so it's up to me. What I've learned so far is that baking is great training for cooking, though not the other way around. (My poor SO struggles to help me with baking, haha.) I'm slowly learning how to handle meat, though. I honestly had no idea how to work with it or what cuts were good outside of what a recipe told me, so I'm learning.


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## theOcean (Jun 5, 2014)

Worked out today again! I'm trying to keep up with a schedule of working out every other day, and now that I'm falling back into the habit it feels easier. Tried to extend my treadmill time by doing ten minutes of some good speed-walking, then started to integrate my speed-walk/run intervals again. Running is slowly feeling a little better, a little more natural, but I definitely can't keep it up too long!

I went on the elliptical for a little bit after that -- I need to figure out how to adjust the stupid seat on the bike we have in our gym so I can use that, too. It's much too high for me -- even if I stand I still bump against it which is uncomfortable. So I'll look into that next time.

Did jumping jacks, hamstring stretches, lunges, push-ups and more reverse crunches. I need to try doing normal crunches, but really need someone to hold my toes! Thinking of grabbing one of the heavier weights next time and putting those over my feet so I can try it.

I finished up the workout with some weights -- did more of the 5-pound ones which are starting to feel weightless, and used the 8-pound weights for a bit. I dared to try the 12-pound ones but they're definitely still out of my league for a little while, but still tried to do some reps with them. One day!

All-in-all: the workout felt really good today! I caught up on Welcome To Night Vale, so I'm going to have to find some more podcast material soon. I'm actually going to one of their live-shows when they're here in my city soon, which I'm super excited about.

Also! I applied for a job, which I'm still really giddy about. My last one was before I really got sick, and was at a magazine where I helped edit and fact-check articles. This job I applied for is at a local publishing house! Even on its website it's charmingly quirky, and sounds like it would be a perfect environment for me. There's a few things they asked for that I'm not quite qualified for, but oh man if they take me up on an interview and hire me I will definitely try my absolute best to learn them. The position is basically helping out the publisher and editors and doing some administrative work, so it sounds pretty ideal for me!


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## Cat-a-Tonic (Jun 6, 2014)

That's fantastic that you're working out every other day!  That is quite a lot to start off with though, so if you feel burned out or too sore or whatever, don't feel bad about taking an extra rest day here and there.  It sounds like things are going well though so I applaud your efforts!  What are your fitness goals right now, are you going to train to run a race or are you just generally trying to get stronger and healthier?  (Or both, or something else?)

Good luck with the potential job!  That sounds awesome and it sounds like you have experience in that field, so hopefully you're a shoo-in to get the job.

That sweet potato recipe you posted, in the photo it looks like the potatoes have skins on them and they have sesame seeds on top?  Do you modify the recipe to remove the skins & seeds, or are those okay for you?  (I cannot do skins nor seeds, that picture just looked like pain to me!)  Other than the skins & seeds though, it sounds yummy.


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## theOcean (Jun 6, 2014)

Thank you!  And my current fitness goals are to lose a bit of weight, and tone up my upper body and maybe my legs. Also just general health! There's actually the Gutsy Walk for IBD tomorrow that I wanted to participate in with my mother, though that's up in the air at the moment because she's unsure of her schedule.

For the sweet potato recipe: the skins are optional, and when I made it I peeled them all off since my body doesn't like those very much. The seeds didn't bother me so I did those, but you make a gomashio with them which is essentially toasting them in a bit of salt water so they're little bursts of salt when you eat. You can probably substitute for a sea salt very easily! And it really is yummy -- you could honestly eat it as a dessert, or just a great snack.


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## Cat-a-Tonic (Jun 6, 2014)

How much weight are you looking to lose?  I'm somewhat similar - Entocort is making me HUNGRY and I've gained a few lbs and my stomach wasn't flat to begin with (I swear, I totally have 6-pack abs underneath this little layer of flab!).  So I would like to lose a bit of weight as well, but I'm thinking in my case it probably won't feasibly happen until I'm off the Entocort fully.  I'm on 3 mg now and the closer I get to remission, the better my appetite gets.  Which is good because it means I'm getting healthy, but not so good for my waistline!

You probably already know this, but I've heard a statistic that weight loss is approximately 70% diet and 30% exercise - so for that goal, it's good that you're looking into healthy snacks as diet will play a bigger role.  Getting into shape will certainly help too (muscle has a higher metabolic burn rate than fat) but diet is really the key.

I might try making those sweet potato snacks - I have sea salt at home, and I'm often low in potassium so I try to eat sweet potatoes anyway.  It's good to know it can be made without the skins & seeds!  Thanks!


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## theOcean (Jun 6, 2014)

Post-flare my weight seemed to settle and stick at an underweight 114 pounds; now I'm around 135, which I don't like.  Ideally I'd like to get back to the 125 range. It was stable at 114 for almost a year, and then in the last month I put weight on all at once! And oh gosh, how long are most people on entocort? It seems like it has a very slow taper.

And yeah, before I pretty much controlled my weight purely with portion control! Now I'm doing that plus trying to eat healthier, and the exercise. So hoping I'll be successful.

Let me know if you make it! Also a tip is to try and use purple sweet potatoes if you can, because the regular ones can get a bit mushy since they have more water.


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## theOcean (Jun 6, 2014)

So, somewhat troubling development: since Monday I've been getting really odd tingling in my arms and sometimes when I move my head, but it isn't persistent. The best way I can describe it is like a burst of white noise. It's gotten much worse today -- now it's with every movement I make with my body, and it may be peripheral neuropathy related to hypothyroid, which I've been suspecting for some time (especially since autoimmune thyroid issues are something my grandmother has). Currently waiting for my GP to call me back about it because I'm pretty worried about it.


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## Cat-a-Tonic (Jun 6, 2014)

Oh gosh, I hope your GP can figure out what this new symptom is and treat it!  It sounds worrying and I hope it's nothing major and easily treatable.  Hang in there!  Keep me posted on what your GP says, worried for you!

As for the weight thing - how tall are you?  I'm 5'8" and I'm currently at 139, so within the healthy BMI range but still a bit high for me.  I'm normally in the low/mid 130s so I've just put on a few lbs, nothing huge, but it's a bit embarassing when my Wii Fit is saying things like, "You gained 1.1 lbs since last week!  Now try to think about the cause of your weight gain."  And I'm yelling at the stupid thing, it's Entocort!   

I think the typical Entocort taper is 12 weeks - 6 weeks at 9 mg, and then 6 weeks at 6 mg, then done (it is safe to go from 6 mg to nothing, although some doctors will have the patient take a 3 mg dose for awhile too).  My experience has been different, my GI kind of tailors my tapers to my specific needs.  When I was on it a few years ago, I spent 7 months total on it - 3 months at 9 mg and 4 months at 6 mg.  It took that long to get me into remission.  This time around, I started taking it in February I think, so it's been roughly 4 months so far.  I started at a low dose this time since this flare has been milder, I started at 3 mg to see if that'd do the trick.  After a couple months I was still having some symptoms, so I got my dose bumped up to 6 mg and I stayed at that dose for close to 2 months.  I've just recently tapered back down to 3 mg without trouble and I'm feeling pretty well these days, so hopefully just a short time longer on 3 mg and then I can stop taking the icky stuff.    I do have to say, I only got the recurrent hideous migraines when I was on 6 mg - now that I'm back on 3 mg, my head feels better too.  So it's not so bad, it's just that I'm hungry all the time lately!

I'm going to look for purple sweet potatoes at the farmer's market, thanks for that tip!  I'm sure I've bought purple potatoes there in the past so I'm hopeful that I can find purple sweet potatoes too.


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## theOcean (Jun 7, 2014)

GP had no idea what it was, but I've figured it out. I stopped my antidepressant (Effexor) on Thursday, and I looked it up and other people online were all complaining about "electric shock" sensations throughout their body. Fish oil supplements apparently help with it, but it's also a bit better today. I also had a freak side-effect where it turned my red hair to brown, but it's slowly coming back in red. Basically: don't let anyone ever take Effexor. It is a terrible, terrible medication.

For height: I'm 5'5"! My doctor says that 130 is apparently the "ideal" for my height, but I always take that with a grain of salt. I don't particularly like how this weight looks on me. I'm an hourglass naturally, but I have a super long torso and then average-length legs -- so when I gain weight I really notice it in my thighs, which is mostly what's bugging me right now.  

And oh gosh! I would be yelling at the Wii Fit too if I were you.  I was actually avoiding logging my weight altogether with the Fitbit. Apparently some of my weight gain may have been caused by the Effexor, though? Or at least that's what I'm hoping. Right now I'm not sure what to think of my weight because I've always heard muscle weighs more than fat? (And I am noticing that I'm getting muscle in my arms! Very excited.)

Oh wow! That's so long in comparison to being on prednisone, though it being milder must balance that out. (Minus the migraines, anyway.) I'm glad to hear that they're getting better, though! Hopefully the hunger will start to subside, too.


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## theOcean (Jun 7, 2014)

Worked out today again despite weird tingling! It wasn't anything too notable; did my regular stretches as well as going on the treadmill and elliptical. I also finally figured out how to adjust the bike seat, so I was on there for awhile as well! I don't last on there too long, so I'm thinking I might try that to start the next time I work out when I'm not as tired. 

5-pound weights really are feeling like nothing now -- noticed there's some seven-pounders that I hadn't noticed before that look like they're from a different set, so may try those next time in addition to the 8-pound ones. I still really can't deal with the 12-pound weights! I wish there was an in-between in our gym but no such luck.

Noticed that there was a sauna area (two of them!) that I'd never been to before -- asked Mom about it and she said that they're actually going to get rid of the saunas, make the change rooms smaller and then try to make the gym areas themselves bigger if not join them into one big gym, which sounds cool. That way we'd hopefully get some more equipment, too!

Definitely noticing that my stamina is getting better... when I was out the other day I ended up jogging/running for a bit without any problems, which would have really winded me before. It's nice to just notice little improvements.

I have an appointment on Monday with my GI -- just a regular thing. He's likely going to talk about getting me on Methotrexate, since he had mentioned that previously. I absolutely want to make sure that my fistula stays closed, so if he thinks it will help with that on top of my Humira I'll gladly go on it (with folic acid), but I wanted to ask him about oral vs injection and which one is likely to have less side-effects. I really don't want to lose my hair again like I did with Imuran!

Also wanted to ask him about my continued constipation problems and about any further testing for that, so we'll see what he says. I just want to get it solved already!


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## Cat-a-Tonic (Jun 7, 2014)

Yeah, my GI says it's safe to be on Entocort for up to 9 months in his opinion.  Since I'm still technically undiagnosed (it's IBD, just not sure which one!), he feels more comfortable with putting me on Entocort.  He said if he put me on pred, he'd only be comfortable with me being on it for a few weeks, but with Entocort a few months is no problem.

I'm glad you figured out the cause of the tingling!  That sounds like a horrible medication!  I'm glad that your hair is recovering, too.  Oh, and as for hair loss - when I was first on Entocort a few years ago, my hair started falling out and someone on the forum recommended I try biotin.  It's a b-vitamin and I was told that I need to take at least 3,000 mcg daily to have an effect on hair loss.  I found pills that were 5,000 mcg, and they worked.  I've been taking biotin ever since, and no hair loss at all on this round of Entocort.  So just something to look into if you experience hair loss again from medication!  It doesn't work for everyone, but definitely worth a try at least.

Yes, muscle weighs more than fat so the number on the scale is not as important as how you look & feel!  When I was first ill, I had lost about 20 lbs over the course of a year.  Then I was on Entocort the first time, and I gained back like 25 lbs and it all came back as icky fat and much of it settled around my midsection.  Once I was off Entocort, my weight settled at around 135 which is normal for me, but I felt flabby.  Then I started working out, and gradually the flab shifted into muscle.  My weight in lbs didn't change though, although I could tell in the mirror that my body looked far different and I liked it much better after I had been working out and put on muscle.  So, your weight might not shift a whole lot, but I promise, what you see in the mirror will!  

It sounds like you're already making some good improvements in the gym, with having more stamina and moving up to heavier weights.  You'll get up to those 12 lb weights, just keep at it!  I remember the stationary bike being difficult when I first started out, too.  The lowest level of resistance on the bike seemed tough and I could only ride it for like 2 minutes before I got totally winded.  Now I can ride for an hour on a hill program - it's tough, but it doesn't feel impossible.  So just keep working at it and you'll get there, with the heavier weights and the bike and whatever else you want to do!


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## theOcean (Jun 10, 2014)

I was wondering about your diagnosis, since I see you in the undiagnosed section sometimes! Are you getting any further testing soon?

And thank you so much for the Biotin recommendation! I picked it up today when I went to the pharmacy to get my 6mp. I asked my GI (didn't hear about it before) and my GP (actually heard about it!) so I'll be trying it once I start. I could only find 250mcg pills though!


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## theOcean (Jun 10, 2014)

Had my GI appointment yesterday and it was pretty quick -- he noted that I definitely seemed to do my research, haha  I can thank this forum for that.

He's putting me on 6mp rather than methotrexate since that's better for fistulas, and also gave me a whole whack of blood tests for my constipation problems. Hoping desperately it isn't idiopathic. In the meantime he gave me a prescription for Resotran, which is apparently a new medication for (specifically) women with constipation problems. I think it's a serotonin-agonist if I'm remembering right. I took it for the first time today and hope it works!

I also got called for a job interview! I go tomorrow at 11:30 to a sewing studio to see if I can do some administrative work. It's in an area I'm really familiar with and it's close to where I live, and they have two studio dogs and what seems like a super nice founder. So I'm excited!

I worked out for not too long today, since my prune juice is wreaking havoc on my system. I swore off of it, swore never to use it again -- but I forgot to take my Miralax last night and didn't want to suffer. Except I still am, but with loose bowel movements instead of super hard ones I guess.

I set up the bike again and used that for about 25 minutes! Really felt it in my thighs after, haha. Didn't do weights today since my arm is all sensitive from my blood test, and couldn't really do reverse crunches because my stomach started its revolt.


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## Cat-a-Tonic (Jun 11, 2014)

Yeah, my pseudo-diagnosis of IBD is basically a diagnosis of exclusion.  All my test results have been "inconclusive", but we've ruled out pretty much everything else (it's not lupus, Addison's, RA, etc) and I respond well to IBD meds, so my doctors treat me with the presumption that it's IBD.  My GI thinks it's microscopic colitis - that would explain why it hides so well.  I've had tests off & on for the past 5 years, but my GI and I decided that it was better for me to try to get into remission than to go through endless tests with no answers (the tests were really expensive too and I was getting deep into debt particularly the first year I was ill).  The fact that Entocort works for me, that stuff *only* works on the TI and the colon, so therefore we can reasonably presume I have illness in the TI and/or the colon and it's almost surely some type of IBD.  It's likely either Crohn's that's hiding really well, or it's microscopic colitis.  Those are the two most likely suspects.

Good luck with the 6mp and the bloodwork - I hope you can get some answers about the constipation, I know it's been problematic for you for awhile now.  Good luck with the job interview too!  Would you be okay working with studio dogs?  I think you've mentioned having a fear of dogs - although maybe working with them every day would help alleviate your fears?


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## theOcean (Jun 11, 2014)

Oops, I keep forgetting how costly all these IBD tests are in the states.  Thank goodness I live in Canada. I'm grateful for our healthcare every day. I'm glad that you're at least getting treated and are responding to the entocort!

And I really hope I get my blood results soon. Usually my GP is great and I get them the next day, but we're even checking for thyroid so I'm not sure if it'll take longer or not.

And yes, I do have a bit of a fear of dogs! I don't even remember where I mentioned that now... I've been getting a bit better about it though, and my SO would love for us to get a pug one day so they're growing on me. I'm actually hoping that working with these ones will make me feel better about it -- I even mentioned in my interview if it would be okay to bring in treats for them! 

Interview went really well! I'm actually typing this while waiting for the bus back home, haha. It's in an area I'm really familiar with, and the studio is so cute. I got along really well with one of the owners -- the one who interviewed me -- and she even said that while she does have a few more interviews to do, she really enjoyed her conversation with me, and that she'd be in touch by the end of the week. I told her how enthusiastic I was about potentially getting this job so I really hope it works out!

This is also the first job I'll have had since diagnosis if I get it. So I'm pretty proud of myself.


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## Cat-a-Tonic (Jun 11, 2014)

Yeah, I've often pondered moving to another country where the healthcare is more affordable!  Even with insurance, I racked up about $6,000 in medical debt the first year I was ill (fortunately I applied for and received financial aid from the hospital, so they wiped out my debt but then I started racking it up again - I'm currently at about $1,500 in medical debt and making monthly payments - since I see my GI fairly regularly, have bloodwork done, etc, I will likely never be fully out of medical debt).  And it took us like 2 years to pay off hubby's kidney stone surgery.  It's insanely expensive in this country to be ill, even with insurance.  Be very thankful that you live in a country that values and prioritizes its citizens' health!

I think it was in the "post a photo of your pets" thread where you mentioned having a fear of dogs?  You mentioned pugs as well and I think that was also in that thread.    I think if you get this job, it will be good for you to get acclimated to being around dogs and will hopefully help alleviate your fears.  I will say, be careful at first of giving them treats.  Some dogs get VERY excited when they see a treat and may even bite your fingers a bit if you try to hand them the treat - my dog is like that, I always have to toss treats to her because I know now not to get my fingers near her mouth when she's in treat-mode!  She doesn't mean to bite, she just gets super excited and apparently forgets about everything else, including the fact that I have fingers.  I don't mean to scare you, but it would be terrible if you got bit by one of the dogs at work and that just ingrained your fear even more.  So try tossing them the treats at first, at least until you see how they interact with other people when treats are involved.  Hopefully they take treats nicely and calmly and are the opposite of my dog!


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## theOcean (Jun 11, 2014)

Well, I'd definitely recommend moving here! You don't pay for doctor's appointments (which is good because I have them constantly), you don't pay for tests (unless they're sleep ones which aren't covered outside of sleep study), you don't pay for surgery, or hospital visits or stays... For a time my SO talked about maybe moving to the UK one day, but then I heard how the NHS can just decide how eh, they don't really feel like footing the bill for your biologic anymore. Hope you don't flare! So that's no longer an option.  I'm very thankful that I live where I do. I never have to worry or second-guess booking an appointment or going to the hospital because I don't have to pay.

Oh yeah! That's definitely where it was - I might need to resurrect that thread because I think we can always use more pet photos.  And oh gosh! I'm not too used to being around dogs so I'll keep that in mind. (Or maybe ask first.)

I don't think being bit would bother me too much... they're tiny dogs which helps! One is a chihuahua and I can't remember the other breed. It's kind of cute -- on the studio's website they even have a section just to introduce and describe the dogs.  The owner told me they really help keep the kids who go to the studio to learn to sew entertained.


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## Cat-a-Tonic (Jun 11, 2014)

Sometimes I (half-jokingly) ask hubby if he wants to move to Canada, and his answer is always "yes" without hesitation.  So if I legitimately did want to move there, he'd be totally on board with the idea!  I have to ask though, how rough are the winters in your area of Canada?  I have friends who live in Winnipeg, and their winters sound absolutely brutal.  We have pretty rough winters here in WI as well as we're in the upper midwest, but I think Canadian winters sound possibly even worse.  My arthritis gets pretty painful when it's bitterly cold and/or snowing, and the more it snows, the more painful it is.  

So that's my big concern I guess - obviously there would be a million other concerns like finding a job and all that stuff, so moving to Canada and becoming a citizen is probably just a pipe dream.  And I do like where I live now and the US isn't so bad, it's mostly just the healthcare costs and all the gun stuff/mass shootings lately that really bother me.  I'm fairly anti-gun (the hubby owns a shotgun which he only uses for clay pigeon shooting or whatever that's called, and we keep no ammo in the house - so we do have a gun which I don't like, but it isn't capable of being used on anyone without ammo so that's a bit of a relief) and with all these mass shootings happening one after another lately, that's really scary to me.  If the US could get its act together with healthcare and guns then it would be a wonderful country to live in!

Sorry, I'm rambling big-time now.  Oh, chihuahuas are teeny but can have big personalities so I don't doubt that the chihuahua is entertaining to the children.    I like to sew as well, that sounds like a really fun shop.  I hope you hear back from them soon about the job!


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## theOcean (Jun 11, 2014)

Oh my gosh, Winnipeg! That's definitely brutal weather, yes. Here in Ontario it depends -- we get a lot of humidity so it swings to extremes but it doesn't get as cold as the prairies or the Yukon or anything. If you want something more temperate you might want to look into BC or the maritimes, though the maritimes do get some rough weather -- hurricanes and whatnot, which we don't get where I am. You would have to look into the provincial healthcare, though -- here we have OHIP which covers everything, and I'm not as familiar with the other provinces or territories. Personally I love living in Ontario though, and I love my city.

The US isn't so bad, except for all those somewhat major things, yes.  I grew up with a friend from a hunting family, so I'm not anti-gun but they would never use it for self-defense or bring their guns to the city or anything. Outside of that in the way I hear them used in the states they scare me, though. 

And thank you! I hope so too. I saw my psychiatrist today and she was so excited for me she told me to call when I heard back, haha.


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## gotumtum (Jun 11, 2014)

Hi The Ocean

I hope you have some better days soon.

Have you tried Kiwifruit / Kiwicrush / Phloe (kiwifruit enzymes I think) for your Constipation? Or essence of figs?

I had a big problems with Migraine and also Restless legs too - I was put on a preventative (well tried a few - the anti epileptics can make you lose weight - too much weight though) Sandomigran is what I ended up on, and that helped a bit, but the Magnesium made the most difference for both - even now I can tell when I am getting low. 

I also find that Gluten causes migraines for me now. I am not sure which diet you are on if any?

Oh, and I had one of the other really random side effects of Effexor just after it came out - Achy Knees! Not just a little achy, THE END OF THE WORLD, I feel 150 years old even though I am only 18 achy - Weird stuff!


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## theOcean (Jun 11, 2014)

I haven't tried those things, no! Unfortunately it seems unaffected by diet, which is unfortunate... I'm going through a slew of tests to try and rule it out as idiopathic, which can hopefully reveal a better way to treat/cure it. Thank you for the thought, though! I've been dealing with this so long that I really appreciate it.

I'm on day two of Resotran and it seems like it's helping already with the constipation though! So that's pretty great.

I haven't heard of sandomigran before -- I'll make sure to mention that to my neurologist when I see her. Otherwise my plan was to try other dopamine antagonists and maybe pregabalin since there are good results with that, and steer clear of gabapentin from all the bad things I've heard about it. My magnesium levels are getting tested as well, so I'll see how those are before potentially adding it. Thank you!

I'm currently not on any diet since I'm in remission, and lactose is the only thing I have an intolerance to. After this set of bloodwork is done, if everything comes back fine, I'm actually going to get a test for celiac just in case. I think in my case the migraines are mainly caused by poor sleep, which is caused by the RLS and periodic limb movement disorder.  So hopefully once that gets treated I'll get less! In the meantime I did want to ask my neurologist about a better medication to take for them before moving to something preventative. That is interesting to hear about gluten causing the migraines, though! My triggers seem to be scents/lack of food/water/sleep.

And oh my gosh! More weird arthritis symptoms are the last things we need. I was pretty lucky while I was on it except for the hair color change. Otherwise I just got really bad nightmares and still do -- can't wait until it's totally out of my system! Are you off of it now as well?


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## gotumtum (Jun 12, 2014)

I'm not on it anymore - it was a good few years ago and I only managed a few days cause of the knees!. I ended up on Nortryptyline (sp?) ( I think it is related to Amitryptyline) Which I was on for 7 years. It ended up causing tachycardia and periperhal neuropathy (we think) so I had to come off it. But I really needed it for those 7 years and have no regrets. Unfortunately it means that I cannot take any tricyclics again, but have been fine since (on that front anyway!) Fingers crossed.

My mum uses amitryptyline for Migraines.

They tried me on topomax as a preventative, but I lost too much weight and 'lost my mojo' on it, and the beta blockers were not an option either as they would have dropped my blood pressure too low.

The Sandomigran / Pizotifen was relatively new but has worked very well. I was having daily migraines and it got them down to 1 a month ish. I did not need ergotamines or anything. I also used it during pregnancy. 

Gluten also used to make my constipated now I come to think of it! Though I have never tested positive for celiac, I assume it is just an intolerance.

Best of luck with the tummy troubles - People do seem to take bm's for granted!


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## gotumtum (Jun 12, 2014)

Oh Also FYI - the migraine medications can have a tendency to affect mood so take care of yourself

My step father in law is on a betablocker for his restless legs. so there are some possible options that will hopefully work - Best of luck as restless legs (and migraines) are horrible.


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## Cat-a-Tonic (Jun 16, 2014)

Ocean, did you ever hear back about the job?  Did you get it??


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## theOcean (Jun 16, 2014)

@Cat: I'm still waiting on a call back! I actually called today to speak to my interviewer just to check in/ask if she was still doing interviews/come across as eager, and also to tell her that I won't be going back to school in September (switching programs!) so I'll be able to stay on longer if she does consider me. They should be busy until 6:30 so I'm expecting a call soon... otherwise sometime later this week.

Also, regarding that program change for school: I've been doing video game design for the last year or so -- it's actually how I met my SO -- but I've been really unhappy with it. The first semester was focusing more on foundations, like 2D -- but I've hated every single moment of doing 3D, whether it was animating it or modeling. I really prefer working in 2D. I was nervous about telling my SO about it, since he's so passionate about it... but he was so understanding when I told him how much the idea of going back to it upset me. I had seen my psych earlier this week and started to cry immediately just thinking of it.

So, program change: I'm looking to go into Occupational Therapy. I was thinking of it already, and then my psych suggested too that she thought it would be perfect for me. I'm too empathetic to consider psychiatry and don't have the science background that it requires, but OT is something I could really see myself doing, especially since as a person with a chronic illness that's something that's important to me personally, too. I think I have all the requirements with it -- I'll just need to check my transcript -- but I could start a 2-year BA for it next September.

In the meantime, I'm still waiting on this job, but was looking into a local Japanese immersion school that offered two-hour classes once a week. They'd only have a maximum of ten students per class, and they'd be two months for each level. After I'd complete that language acquisition, I could get a certificate (online) from a well-known local university that offers it for translation, which I could do on the side, and also because language is something I'm really passionate about.

So, I've had some pretty important life-changes in the last week. And for the first time in a long time: I'm actually excited about school again. 

As far as exercise goes, to keep this relevant to the thread: I didn't get to work out too much, because I was trapped with in-laws on the weekend! I did get a good walk in with my SO, though -- an hour/hour and a half through his small town. I'm thinking of going on the bike for a bit today... I really want to focus a bit on my thighs since that seems like the only area where I've really put back weight, and want my legs to at least look good! (I'm sure they do and that I'm just -- well, being silly about self-image because I like them at this size on other people!)


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## Orchid (Jun 16, 2014)

I'm so glad you're doing better, when we last we talked you were more nervy then me before the HRT changed my personality. Getting out of that awful misogynistic major is alone going to do wonders for you. Has he asked you about your ring size yet?


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## theOcean (Jun 16, 2014)

He already asked me about it in December, actually.  It's more a matter of money at this point, though!


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## Orchid (Jun 16, 2014)

Mine's been the same way and I'm "WHOA WHOA SLOW DOWN HERE."


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## theOcean (Jun 16, 2014)

With R it must be so much more dangerous because it ISN'T a matter of money, oh my gosh!


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## Orchid (Jun 17, 2014)

We're two young ladies with stars in our eyes and we're going to make a huge mistake together and it's going to be _awesome._ 

Let me know how the nephrologist appointment goes!


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## Cat-a-Tonic (Jun 17, 2014)

For what it's worth, my hubby has a degree in animation (2D and 3D), and getting a job in that field is seriously difficult!  Hubby's done freelance work off and on and he's applied to many, many jobs without so much as a call back.  His freelance jobs definitely do not pay enough to cover our bills and he just can't find an actual job in the art/animation field, so I basically support us while he struggles with a few scant freelance projects plus a part-time job working 2 days a week in a costume shop.  In a nutshell, I think you made the right choice to switch out of that field just because there are so few animation jobs out there and a ton of competition for the scarce jobs that there are.  And of course it sounds like for your own well-being you definitely made the right choice too!

That Japanese class sounds super fun!  I'm trying to teach myself Korean (it's pretty much the one Asian language that has a written alphabet, so I can actually read and write it without having to memorize a zillion written characters like you have to do with Japanese, Mandarin, etc).  I wish there was a class like that for Korean!  That sounds really cool.  (Speaking of Japanese, I still haven't been able to find purple sweet potatoes yet but I'm still looking!  I think potato season must be a little later in the summer/early fall because there were none when I went to the farmer's market.)

Good luck with the bike ride today!  Have fun!


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## kel (Jun 18, 2014)

Orchid said:


> I'm so glad you're doing better, when we last we talked you were more nervy then me before the HRT changed my personality. Getting out of that awful misogynistic major is alone going to do wonders for you. Has he asked you about your ring size yet?


Did I miss something? When did she say it was misogynistic?


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## theOcean (Jun 18, 2014)

kel said:


> Did I miss something? When did she say it was misogynistic?



I never did... unfortunately the video game industry is inherently misogynistic, though. I never experienced too much of it in my design classes, but there were definitely moments. When I was still doing programming instead it was much, much worse. I was interacting with guys who had only interacted with girls in erotic visual novel-style games. It was disconcerting and not a place I really felt comfortable in as a woman for a number of reasons.

It wasn't that which stressed me out, though. It was more that 3D modeling really didn't suit me -- I prefer 2D art when I'm making things myself! And even then I consider myself more of a writer, instead. Basically I tried the program and after the first two semesters it wasn't what I thought it was. But I'm really happy with where I'm hopefully switching to now -- I've been doing more research and feel really excited!


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## Orchid (Jun 18, 2014)

Quick question before I go back to napping: How much time is switching to OT going to add to your college stay? What kind of medical licensing do you need to practice up there? You've probably considered these things but I'm just curious.


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## theOcean (Jun 18, 2014)

Well, it's a 2-year BA! So not that long, fortunately.  But that's to become a OT Assistant, but they still make an average of like 50k a year so it's pretty decent. If I enjoy it enough I could get a masters after to become an OT, but that's five years so I'd probably want to be working as an assistant for awhile first to see how I enjoy it. So it depends, basically. I really hate the university the masters is offered at, though...


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## theOcean (Jun 18, 2014)

Also, update: worked out today! Found possibly the most terrible way to get myself to bike longer, and it's bringing my 3DS with me so I don't look at the clock as often and it worked marvelously. I was on it for 45 minutes without much difficulty, though when I got off the bike my entire lower body felt like lead.  Did some weights after that, and some core stretches and could tell I hadn't done them in awhile!

I've also been walking a lot more lately, which is good. The weather here has been nicer (not as hot) and there's been a bit of rain and I love that.

Also! Called the lady who interviewed me since I called on Monday and never heard back from her... she said it was because the current admin never told her (position I'm trying to get) and "that's just the way our admin is right now"  She said she's deciding who got the job tomorrow though! And thanked me for calling her and letting her know I won't be busy in September anymore, and said I was sweet. I let her know I was still pretty interested in the position, too, so I'm really hoping I hear good news tomorrow!


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## Cat-a-Tonic (Jun 19, 2014)

I find that playing video games while riding the bike just seems to make me ride slower, so I don't do as well.  It's like I get too into the game and forget to move my feet, ha ha.    So I tend to just watch DVDs when I ride the bike, anything more involved than that and I slow down.  I try to keep my pace at/above 12 mph on the bike, so as long as I'm at least partially paying attention to that, it's okay - but a game takes up too much of my attention I think.

Good luck with tomorrow then, I hope you get the call!  Fingers crossed for you!


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## theOcean (Jun 21, 2014)

Still no call... at this point assuming that I haven't gotten the position, which is disappointing. Applied to nine more jobs last night. I have vague hopes I might still hear from the studio that interviewed me just because the owners were a bit disorganized/frazzled, though, but am preparing to move on otherwise.

Fire Emblem is actually pretty good for being on the bike since it's tactical turn-based, and therefore I don't have to be reacting to anything in the moment. I went on the bike again today for about half an hour and I've been upping my levels on it every time I use it -- legs felt like lead again once I got off!

Also: still no call back about all the blood testing I did the other week... I'm not sure if that means everything was okay or if they just haven't gotten the results yet. Gonna call on Monday. I also finally picked up some Biotin (1000mcg at last!) so I started taking 6mp. I was starting to get small cramps, and while that was the only symptom I was experiencing, I know I shouldn't be getting anything at all. So! Hopefully that'll take care of it. No brainfog or anything so far, which is nice. I got that really badly from Imuran.

Also, saw my neurologist the other day about my migraines and had to explain how they were caused by poor sleep, and then had to explain what caused my poor sleep. She outright said she'd never had a patient like me before and had no idea what to do for me, and even tried to refer me to a new neurologist who also specializes in migraines. Basically: she totally gave up on me! She gave me a list of potential preventative migraine medications and told me to just go show them to my sleep specialist and sent me home.

Most likely going to go on pregabalin if my sleep specialist's current plan for me doesn't work, though. Which would help both the migraines and the PLMD. For now he's put me on two months of imovane (7.5mg) every night, then taper from there. It helps consolidate fragmented sleep like mine in about 70% of patients. Here's hoping I'm in that lucky 70%!


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## Cat-a-Tonic (Jun 23, 2014)

Oh, that sucks about the neurologist not knowing what to do with you.    I had a rheumatologist like that, he kept trying to refer me back to my GP.  At first I was like, no, my GP sent me to you because you're the specialist!  Stop trying to get rid of me!  But he kept doing it and he was rather worthless.  After the 2nd or 3rd time of him trying to pawn me off back to my GP, I dumped that idiot rheumatologist.  It sucks when a doctor has no idea what to do with you, but it's definitely better to just be rid of doctors like that!

Good luck on the new med, I hope it helps and that you're in the 70%!  Good luck with the 6mp as well.  Hopefully that stops the cramping and keeps everything calm and happy without too many side effects!

Ah, maybe I need to try playing a different game when I ride the stationary bike.  I had been attempting to play Ribbit King on my Gamecube - it's a weird game, it's basically frog golf.    But you have to line up your shots with some precision and it's hard to focus on being precise with a controller while you're pedalling, so I think that was the reason I kept slowing down on the bike.  Lately I've been replaying Dragon Quest 4 on my DS - that game is so fun!  And I wonder if that's the kind of thing I could play while doing the stationary bike, as it's an old-school turn-based RPG.  I might have to give that a try.


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## kel (Jun 23, 2014)

I love the Fire Emblem series. Which one are you playing?


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## theOcean (Jun 24, 2014)

@Cat: Haha, I told my psychiatrist about what my neurologist said and even she told me out of all her patients I definitely had "the most complex biology"  I feel like I should win a prize or something.

The 6mp's been treating me well, surprisingly! No side-effects at all from starting it, which is awesome. I've also been taking it alongside biotin, though it'd be too early to tell if it would have caused hair loss. Still!

And yes, turn-based RPG is the way to go, I think! I'll maybe slow down a bit while setting up for battles but that's it.

@kel: Currently playing the new 3DS game, Fire Emblem: Awakening! I've played 7, 8, 9, 10, a bit of Shadow Dragon (didn't really care for it, especially the art), and I've played a little bit of 6 through someone's English patch way-back-when. 8/Sacred Stones was my first one that got me into the series. Which ones have you played?


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## theOcean (Jun 24, 2014)

Also, very important update: I got the job at the sewing studio that interviewed me!! I had kind of given up hope at this point and was sending in resumes elsewhere. I would start only two days a week since the kids they'd usually be teaching there are away until end of summer, but after that I'd get more hours.

I get trained next Thursday! I'm excited. 

EDIT: Also I guess I should say I worked out yesterday, too. Still battling the withdrawal from Effexor (which is apparently one of the worst medications for it) and exercising actually really helps my moods from it. I went on the treadmill for a bit since I'd just been focusing on the bike for awhile, which felt good. Still interspersing running with speed-walking -- I had to go a little slower at first to get used to it again but it wasn't so bad.

Also beginning to suspect my weight gain was from going on my antidepressant -- because otherwise I really hadn't been eating any different, and I wasn't working out before! So it wouldn't really make sense for me to suddenly gain all this weight. Orchid suggested it'll probably just all come off once it's completely out of my system, and I hope she's right.


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## Cat-a-Tonic (Jun 24, 2014)

How long does it typically take for Effexor to get out of a person's system completely (or is it different for everyone)?  I hope it's completely out of your system soon, it sounds just horrible.  But yes, I know what you mean, exercise really really helps with my moods and depression as well.  It's wonderful that I can have a stressful day and then go into the gym and just leave it all there.  I almost always feel better both physically and mentally after a workout.  

Yay, congrats on the job!  I'm glad they finally got back to you about it and I'm so glad that you got it!  And yeah, 2 days a week isn't great - my hubby typically works 2 days a week at his job in a costume shop - but, now that he's been there a little while and has proven himself to be competent and reliable, the owner has started taking more days off and giving hubby more hours here and there.  So hopefully once you learn the job and have been there a little while, they'll be happy to give you more hours too.


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## theOcean (Jun 24, 2014)

I'm not entirely sure... it varies a lot but people online are saying about a month for the dose I was on, and I even tapered to make sure my withdrawal wasn't that bad. I can kind of track it based on if I'm still getting vivid nightmares (fortunately and unfortunately). Hopefully I'll be done with it soon!

And that's good to hear, thank you!


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## kel (Jun 24, 2014)

Everything but 4 5 6 I think. Awakening was pretty fun, certainly better than shadow dragon. Sacred stones is definitely my favorite though, regardless of all the hate it gets online. 

More on topic-my hair thinned out noticeably when I took 6mp (for around 8 months) but it came back afterwards.


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## theOcean (Jun 24, 2014)

Yeah, I'm not really sure why Sacred Stones gets so much flack. I guess because of the accessible grinding? But then no one really gets upset about that with Awakening, and because of it (and its casual mode) it became way more accessible to people who had never played FE before. SS is one of my favourites too, though -- definitely enjoyed it more than the Tellius games.

And yeah, that's what I was worried about with 6mp! Mine thinned out really badly on Imuran so I'm pretty worried about that. I'm hoping the Biotin will keep it at bay, or that maybe since my body had Imuran before I might luck out this time and not lose any hair. We'll find out!

Small update: worked out again earlier today since I was feeling really good. Went on the treadmill and then focused on weights for a bit. It's strange how I'm actually missing getting some soreness, now! I just want some proof that I'm improving I guess, though I know it takes time. I see it in my stamina and a bit in my strength, though.


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## CrohnsChicago (Jun 26, 2014)

I have the same thinning issue with 6-mp (and I suspect with Asacol as well). Some of the fullness is coming back since I lowered the dose of both medications over winter. I have also been using the Organix Biotin and Collagen hair shampoo and conditioner to help my hair appear thicker and it seems to help if even a little for me.

Also, congrats on the new job! What type of sewing items will you be working on or will you be selling products? I hope it works out for you!    

Time....a word I have a love/hate relationship with when it comes to exercise. But good to hear you are feeling well enough to hop back on the saddle AND seeing improvement. It's proof that time does make some improvements even if not drastic ones right away


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## Cat-a-Tonic (Jun 26, 2014)

I wonder if there are any IBD meds that _don't_ cause hair thinning/loss!  For me, it was Entocort that caused my hair to start falling out.  As soon as I started taking biotin, the hair loss stopped.  I've been taking biotin ever since and I've had no hair loss with this round of Entocort, so biotin is still working it seems.

Ocean, did you have your training at the new job today?  How did it go?

That's great that you're having less soreness - that means your body is getting accustomed to doing regular exercise.  If you legitimately miss the soreness, just try doing something new.  I like to think I'm in pretty good shape at this point, but when I do something new/different, ouch!    Last winter I tried ice skating - I hadn't been ice skating in something like 10ish years.  After about 5 minutes on the ice, my shins were on fire!  That was definitely a new kind of soreness!  And even if I let too much time pass in between yoga sessions, I get sore then as well.  As long as you make your body do something new every once in awhile, you'll feel sore again, I promise.


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## theOcean (Jul 22, 2014)

So, I kind of exist! Or am attempting to. I still don't really feel like I have much energy for the forum, but I'm at least trying to get some replies in today and I'm checking all my sections. Part of the reason for my disappearance is the fact that yes -- I did actually get the job! My schedule's been a bit erratic while I was starting because of training, but now I'm settling into my schedule of Wednesday/Saturdays and my boss is already talking about adding more days. It's a really nice environment and I feel really comfortable there, so it's wonderful.

What I do need to get back to is exercising... I've been pretty terrible about it since I started work, and really haven't had any excuses for it. My mood is at least leveled out again (finally have those stupid antidepressants out of my system) so I don't have to worry about that... but the exercise is still good for me regardless. I might try and get back to it by using the bike again.

Health stuff: 6mp has been treating me wonderfully, and I've stopped getting cramps. No hair loss, possibly thanks to the Biotin I've been taking with it. I also think I figured out the constipation problem that's been plaguing me for almost a year: it's not actually constipation. It's possibly a hemorrhoid I've had for a year that somehow, despite inspections for my fistula and a colonoscopy, no one has managed to mention to me. My GP doesn't think it looks thrombosed but it certainly felt that way -- whenever I would have a BM I would bleed and feel like either crying or screaming from how painful it was. I've been taking Tylenol consistently for the last two weeks which has helped a lot, and upped my Restoralax/Miralax to every night. No pain, but my bowel movements feel incomplete because of how soft they are. The no pain is nice, but I have to keep this up until my GI appointment on the 11th. Hoping to get the hemorrhoid injected so it coagulates so I don't have to deal with this anymore.


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## Cat-a-Tonic (Jul 23, 2014)

Yay, glad to see you around the forum again!  I figured you were busy with job stuff.  It sounds like you're enjoying the job so that's wonderful!  How are the dogs at your job, are you getting more comfortable being around them?

That's too bad that you haven't been exercising, but it's nice that you say you have no excuse for it (so many people make excuses, I'm too busy, it's too hard, I don't have time, etc and I just hate that - if you want to exercise, you make the time, you don't make excuses!).  Yes, hop on that bike!    Even if you just do it for 20 minutes, I promise you that your body will thank you for it.

That hemorrhoid sounds like a nasty one.  Is it internal or external?  I've had both, my internal ones seem to bleed but not really hurt, and the external ones can hurt like crazy at times but don't really bleed.  Neither type is fun in the least though so I feel for you!  Be careful with taking Tylenol, too much of it can affect your liver, and I believe 6mp can also affect the liver?  (They're both metabolized in the liver or something like that?)  Those two in conjunction may not be the best idea.  And I know, there really isn't any other OTC pain med besides Tylenol that isn't an NSAID, so that kind of sucks.  But for me, if it's pain I can deal with, then I choose to just deal with the pain rather than risking taking Tylenol (my liver is already kind of messed up so I don't want to make it worse).


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## CrohnsChicago (Jul 23, 2014)

Welcome back theOcean  Happy to hear things are turning around for you in a positive way with your job, symptoms and 6-mp, I hope the upward momentum continues for you :hug:

I also like that you admit there are no excuses. I haven't exercised in two days. I COULD use a few excuses, but the reality is that there were at least a few minutes throughout my day where I could have incorporated exercise somehow. Every second of activity does count. I hope you can get around to moving some more soon! 

Work, especially getting back into a regular work routine after being sick, is definitely exhausting. However you will build up your energy and get a grasp on your schedule and situation with time (there goes that dreaded word again!  ) Are you still signed up with a trainer? 

Good luck with the hemorrhoid situation those are definitely no fun to deal with.


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## Cat-a-Tonic (Aug 11, 2014)

Hey Ocean!  I just wanted to tell you, the hubby and I went on a mini road trip this weekend, and one of the places we went was a Japanese grocery store that we really like (Mitsuwa - in the northwest suburbs of Chicago).  I remembered your post from awhile ago about that recipe for the purple sweet potatoes.  This grocery store carries purple sweet potatoes, so I bought a few and I'm going to try the recipe this week!  I'll let you know how I like it (I will be substituting something, maybe rice, for the sesame seeds since I can't have those, and I'll also be peeling the sweet potatoes, so I'm going to slightly change up the recipe to suit my tummy needs).  I'm excited though and wanted to share with you that I finally found purple sweet potatoes.


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## theOcean (Aug 11, 2014)

Ahh, I'm glad!  Good luck with the recipe, and tell me how it goes!

Also: I've been (purposely) bad about replying to this thread because I didn't want to respond until I'd worked out again... which I finally did yesterday. Went on the bike, did stretches and some weights but have definitely lost some of what I had before. Couldn't work out as long and got tired much quicker, so I need to work myself to the point where I was before again! I could see myself losing muscle tone in my arms and knew it was time to start again. 

I'm seeing my GI today in two hours or so about the hemorrhoid situation... I really want it to get taken care of so I can stop existing on Miralax.

I also need to talk about my job situation, I guess... I got let go the other week because I didn't seem naturally social enough when dealing with customers. But when I've talked about it to others they all think it's actually how I was trained, and that it's my boss's own fault. I was fine at admin stuff and picked it up super fast, but in three weeks she only ever briefly showed me the retail area once and never really trained me properly for that or for phones, and then fired me for not being comfortable with those aspects. So I'm back to looking for a job again, and doing a more intensive look at school to see what I might be good at in the future.


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## Cat-a-Tonic (Aug 11, 2014)

I'm sorry to hear about the job situation.  It sounds like it's for the best, though.  If their solution is to just fire you rather than talk to you/try to re-train you or work with you on whatever issues, then it sounds like your boss wasn't very good.  Good luck with your future searching, I hope you can find a job or school program that fits your personality much better.  And I totally empathize - I'm a huge introvert and really awkward, and social-type stuff does not come naturally to me either.  I can sometimes fake it, but it's definitely not one of my talents.  My extent of faking being social is to ask "how are you" and talk about the weather.  If the conversation turns to pets then I get happy because I actually can talk about my pets without feeling too awkward.  But yeah, I'm basically socially clueless (sometimes I suspect I might have asperger's as I'm literally that awkward, have a hard time with eye contact, and I fit a bunch of the other criteria too).  Then sometimes I vascillate between being an over-sharer or just clamming up completely which is even more awkward.    I'm probably the least-fun person at parties - thank goodness I almost never go to parties!

I'm glad you're re-focusing on fitness.  Try not to let it slip by the wayside again when you get a new job and/or re-enroll in school!  Even if you just take quick walks on your breaks from work or in between classes, you should be able to squeeze in workouts here and there.  I work a full-time job but I make time for fitness either on my lunch break or after work - sometimes that means I can't do other things, but it's worth it for me to prioritize fitness over other stuff.  Anyway, I'm rambling again.  Good luck with figuring out what the next chapter in your life is going to be, whether it's school or work or both!


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## Orchid (Aug 11, 2014)

Wow, what a jackass. If you were fired for that reason then I have to say it's likely for the best because she was just going to bat you around like a cat toy. Have you considered biking? It's easier on your knees than running and gets you places way faster.


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## theOcean (Aug 22, 2014)

Haven't posted about it (obviously), but I've been working out a bit again the last week or so. I've started using the rowing machine in my building and like it a lot! But I feel like I'm not pushing myself enough, and part of it is because I find I'm just not really a person that sweats. In truth all it would probably take is putting myself back on the treadmill again, which is a good idea anyway because stamina. 

Thanks for the comments about the job loss, guys! I'm over it at this point and ready to get back to the job hunt again, sigh. Also looking into school stuff a bit more thoroughly and am hopefully meeting with someone who can give me advice re: future careers. Finding something that a) I actually might like and b) makes me money is pretty difficult.  Or at least seems so when I don't know what all my options are...

I also had my GI appointment last week -- I don't have a hemorrhoid! I have an anal skin tag WITH a fissure on it, which is wonderful. I did some quick reading up and it looks like it can be treated somewhat similarly to a hemorrhoid, though... but I've also heard depending on the method there's a risk of incontinence -- I'd guess in case the sphincter muscle is damaged at all?

I need to book an appointment with my surgeon for her to assess. I know that the skin tag appeared around the time all this pain started, so maybe removing that would also deal with this fissure problem because I don't have them anywhere else. I also keep building up a tolerance to Miralax (the only thing that helps keep things livable and pain-free) so then the process just keeps starting over again. I've also been given a topical calcium channel blocker in the meantime but I don't think that will do much, honestly. I just really need to see my surgeon.


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## CrohnsChicago (Aug 22, 2014)

Glad you are back to it!  How do you like rowing? I thought about trying it out periodically but the machine looks a bit intimidating and complicated to me lol.

With regards to jobs, what sort of skills do you already have and which ones would you consider/are interested in learning at any point?

I don't know a great deal with regards to hemorrhoids and fissures so I have no comment on the incontinence but I'm sure someone else can chime in on that. Definitely sounds like a localized issue if you have no other pains so hoping that whatever treatment you need will fix your other symptoms. 

I know what you mean about Miralax tolerance. I feel like I need a little bit more these days to get things moving if I eat too much fiber or am feeling a bit backed up for whatever reason. The only thing I could maybe suggest is that other ways I manage to get things moving is via ginger tea and juicing fruits and veggies for detox. Maybe take a day if you are able to predominately drink your meals and see if it helps to start cleansing out your system?


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## Cat-a-Tonic (Aug 25, 2014)

Ocean, when you say you're not a person that sweats - do you mean physically your body doesn't produce sweat (meaning a workout would be very uncomfortable) or do you mean you just don't enjoy sweating?

As for your fissure & skin tag - I've had fissures but never on a skin tag!  That sounds pretty awful and I hope you can figure out a way to get it to heal.


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