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06-10-2014, 04:49 PM   #61
theOcean
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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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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
06-10-2014, 04:55 PM   #62
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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.
06-11-2014, 09:35 AM   #63
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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?
06-11-2014, 11:00 AM   #64
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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.
06-11-2014, 11:57 AM   #65
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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!
06-11-2014, 01:58 PM   #66
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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.
06-11-2014, 03:40 PM   #67
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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!
06-11-2014, 06:27 PM   #68
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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.
06-11-2014, 08:56 PM   #69
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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!
06-11-2014, 09:11 PM   #70
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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?
06-12-2014, 02:54 AM   #71
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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!
06-12-2014, 03:00 AM   #72
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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.
06-16-2014, 11:40 AM   #73
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Ocean, did you ever hear back about the job? Did you get it??
06-16-2014, 05:20 PM   #74
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@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!)
06-16-2014, 05:26 PM   #75
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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?
06-16-2014, 05:27 PM   #76
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He already asked me about it in December, actually. It's more a matter of money at this point, though!
06-16-2014, 05:30 PM   #77
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Mine's been the same way and I'm "WHOA WHOA SLOW DOWN HERE."
06-16-2014, 09:01 PM   #78
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With R it must be so much more dangerous because it ISN'T a matter of money, oh my gosh!
06-17-2014, 06:20 AM   #79
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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!
06-17-2014, 09:34 AM   #80
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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!
06-17-2014, 11:19 PM   #81
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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?
06-18-2014, 01:53 AM   #82
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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!
06-18-2014, 07:15 PM   #83
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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.
06-18-2014, 08:04 PM   #84
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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...
06-18-2014, 08:09 PM   #85
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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!
06-19-2014, 08:58 AM   #86
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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!
06-21-2014, 05:19 PM   #87
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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%!
06-23-2014, 12:55 PM   #88
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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.
06-23-2014, 05:46 PM   #89
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I love the Fire Emblem series. Which one are you playing?
06-24-2014, 11:57 AM   #90
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@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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