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07-10-2013, 02:40 PM   #541
xX_LittleMissValentine_Xx
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Well, its not exactly good news but its great you are getting some answers! And that you liked the doctor too
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07-10-2013, 07:39 PM   #542
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Cat, that is great that you are on the road to getting some answers
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07-10-2013, 08:34 PM   #543
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Thanks guys! I have to admit it put me in a really good mood to think I might be finally getting somewhere diagnostically. Hit the gym tonight and did great, had to skip the abdominals machines again but did everything else (tried doing the plank position as I was stretching, to test my abdominal muscles, and my body gave me a clear "stop" signal, so things are still not quite right). So yeah, had a good workout and a good dinner and I feel pretty okay about things at the moment.
07-10-2013, 09:59 PM   #544
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Cat, I'm so glad to hear things are going well! Sounds like you got some good answers from the rheumy and will be getting some more. Hooray!

Tomorrow is my big day, I have to check into the hospital at 5:45 m. My hubs will be updating the caring bridge site after it's over! Hoping the hospital food doesn't bother my belly, this has not been a good belly week at all.

love and hugs, hope the belly treats you good!
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Colonoscopy done August 2013, no evidence of Crohn's seen, biopsies done and one polyp removed.
Polyp is precancerous adenoma

(Diagnosed with a diffuse astrocytoma (brain tumor) 5/31/13.
Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)
07-11-2013, 05:06 AM   #545
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Hopes and prayers your way today Cindy!!

Cat, I hope this isn't just another dead end! Good luck! I hate to say that it's good news but when you've been fighting for so long, I'm sure you feel vindicated at the least!
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07-11-2013, 10:46 AM   #546
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Cindy! You're probably already in surgery by now, but best of luck and I'm keeping you in my thoughts! Big hugs and I hope you have a great outcome from the surgery. I'll be checking your caring bridge page!

Mark, I do feel kind of vindicated. Nobody wants to have arthritis, but I've already got it so I may as well use it to tie things together and try to solve my health mysteries. Knowledge is power, and the more I know about what's going on in my body, the better I'll be able to treat it.

Update 7/11/13: I felt good yesterday right up until bedtime. Then my guts decided to empty all at once, and there was a bit of blood in the stool. That took some of the wind out of my sails - I hadn't passed blood in close to 3 weeks, and had almost fooled myself into thinking I wasn't going to bleed anymore because I was feeling well-ish. So much for the power of denial. It was a teeny bit of blood though so I'm torn as to whether or not to let my GI know about it. I really want to focus on the arthritis stuff right now with my MRI just about 10 days away. Once the MRI results are in, then I feel like I can focus on my guts. So I think I'm going to hold off for now on calling my GI, and will call him after I know the MRI results.

Just thinking out loud here, but I wonder if I bled just a little because I used my abdominal muscles at the gym just a little? I tried the plank for like 10 seconds just to test my abs, and I stopped when it became clear that pain would be in my future if I didn't stop. If I request a colonoscopy from my GI in the near future, I think I'm going to do a bunch of abs exercises the day before my scope. If they can see the bleeding on scope, they can at least see where it's coming from and maybe put a stop to the bleeding. I'm only bleeding once every week or two, so if I just left it up to chance, they probably wouldn't see the source of the bleed on the scope. But if I purposely trigger bleeding by working my abs, the scope would surely see that. I realize it'll suck a lot to do abs exercises while prepping, but it seems like something I need to at least try.
07-11-2013, 07:12 PM   #547
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It's a shame you've been frustrated so many times you would actually attempt to make yourself bleed before a scope!! I know you're serious though! Good luck Cat
07-12-2013, 10:27 AM   #548
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Yeah, I know it's not the best idea, but with my last c-scope (over 3 years ago), I was feeling awful and was sure they'd find something. Nope, I looked completely fine both visually and on biopsy (and they took like a dozen biopsies including at least one from the TI). When your symptoms don't match up with the test results, sometimes you get a little desperate for answers. I don't feel as awful lately as I did back then, so that doesn't really bode well for them finding anything, and pushing myself to bleed might be my best shot this time around. I mean, the bleeding has to come from somewhere, and since it's always been bright red blood, it's likely coming from somewhere that can be seen by the scope.

My other option is, I can eat some Greek yogurt before prepping. Greek yogurt made me pass blood the one time I had attempted to eat it. I don't know why Greek yogurt made me bleed, but it was a truly miserable experience. Still, if it could get me some answers then it's worth considering. Greek yogurt plus some strenuous abdominal exercises? I'd feel horrible for sure, but I'd almost certainly be passing quite a bit of blood.

I haven't even called my GI yet to request a scope - these are just ideas I'm mulling over. Going to have my MRI first and then will request a scope. I know I need another scope soon - I am having another day of feeling pretty crappy and it seems I'm gradually having fewer good days and more bad ones. I felt okay for most of this week but today is not so good. I wasn't feeling great last night either, so the only exercise I was able to muster was to walk my dog. It was cute, though. The fenced-in dog park is right next to a big field that's usually used for soccer, although last night there was a game of "ultimate frisbee" going on. A girl on one of the teams saw my dog and shrieked, "Corgi!!" Then a couple girls on the other team were like, "Corgi! Oh my god, corgi! So cute! Corgi!" You don't really get that with other dog breeds. I don't think anyone has ever yelled, "Poodle!" or "Golden retriever!" But I hear "Corgi!!" regularly when I take my dog out for walks.
07-12-2013, 10:29 AM   #549
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Do you have a problem digesting protein? Most greek yogurts available in the grocery store have almost no carbs or fat in them and around 20+ grams of protein per serving. Also, what brand are you buying?
07-12-2013, 10:39 AM   #550
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I honestly don't remember what brand it was, it was about a year ago that I tried it and bled. I can do some types of protein okay but I'm kind of limited there. I can't do red meat and I have trouble with most dairy too, but I can do chicken, turkey, fish, eggs, etc. So I eat a lot of eggs, use ground turkey in a lot of recipes, and so on. I think it's the probiotics in the Greek yogurt that my body really didn't like - I've had trouble with probiotics in the past (they seemed to make my GERD much worse, and my GERD improved when I stopped taking probiotics). I'm lactose intolerant too so the dairy aspect of it probably didn't help matters either.
07-12-2013, 04:06 PM   #551
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Ugh. I am not feeling well at all today. There is a lot of grumbling in my tummy, and I'm having some stabby pains in my rectum, which is just lovely. Haven't passed any blood today though which is curious. I was hoping to go to the gym tonight, but now I'm thinking it's better if I rest instead and hopefully will get in a workout tomorrow if I'm feeling better. I hate skipping workouts, but I really don't want to have an issue in the gym and have to explain to the staff that my rectum hurts!

And I just don't feel up to it. The hubby and I are hoping to take the kayak out tomorrow, I hope that can still happen. Kayaking isn't super strenuous, but strenuous enough, plus I have to have enough strength and stamina to be able to lift the kayak up onto the car and finagle it in and out of my walk-out basement (we don't have a garage) so I don't know if I'll be up to that challenge tomorrow. I hope I am. (It's a 16 foot double kayak so it takes both of us to move it and get it up on the car roof rack.)

I hate when my body does this, just random pain out of nowhere. I got enough sleep last night, I haven't eaten anything iffy, I'm not under any extra stress lately, I haven't forgotten to take my meds. It's frustrating when I feel like I'm doing everything right but I still get punished by my body anyway. Oh well. A night in front of the TV with my heating pad and my crochet project it is then.
07-12-2013, 10:01 PM   #552
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Hope you feel better tomorrow Cat! Sounds like you better not let hubs walk the dog!!
07-14-2013, 10:10 AM   #553
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Update 7/14/13: I made it to the gym yesterday evening. I woke up yesterday morning not feeling great, but as the day went on, I felt somewhat better. Didn't go kayaking, but around dinnertime I was feeling well enough to try hitting the gym. That went okay, except I had drank some orange juice a few hours prior, and even with a 300 mg Zantac and 10 Tums (the max daily dose) in my system, I still got some crazy heartburn. Drank a ton of water during my workout to try to alleviate it, and that did help somewhat. Felt better once my workout was over.

Today I walked my dog early in the morning (it was still too hot out!) and we ran into a few of my dog's friends (fellow corgis) so that was nice. Now I'm just doing stuff around the house, laundry and cleaning and such. May do yoga later if I feel up to it.
07-15-2013, 01:42 PM   #554
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Update 7/15/13: Lately we've been making homemade orange juice in our juicer (see post above about horrible heartburn after drinking OJ). It's absolutely delicious, but apparently it is way too acidic for my poor broken digestive system to handle, so I've had some hideous GERD symptoms lately. I had 2 glasses of fresh OJ yesterday, and woke up with a sore throat today, which hasn't happened in awhile. It means I was refluxing a lot as I was sleeping, enough for my throat to become sore from the acid coming up. Before I was on my current mix of GERD meds, I would wake up with sore throats regularly (I usually lie on my left side when I sleep, and I'd often have a sore throat only on the left side - presumably the refluxate was coming up and pooling in my throat and affecting the low side, which was the left side). So no more orange juice for me, which is terribly sad.

I walked the dog yesterday morning, early to try to beat the heat, but it was still too hot out at that time. That sapped a lot of my energy - my body hates heat & humidity - so I did a few things around the house but then rested for most of the evening. Felt okay for the most part. Feeling so-so now, stomach is a bit iffy and I had some pain earlier. I swear, if this is a flare then it's the weirdest flare I've ever had. My previous flares, I'd get abdo pain in the same spot every time in the LRQ. I could pinpoint it for you. But lately, my pain jumps all around. Sometimes higher up, near the ribs, sometimes it's in the lower-left, sometimes it's in the LRQ but not in the specific pinpoint spot, sometimes it's in multiple areas at once or all over. It's really odd!

Anyway, I'm feeling okay-ish so I'm going to attempt to go lift weights tonight if I'm still feeling reasonably okay. As usual in this flare, I'll skip the abdominal machines but will attempt everything else. Probably yoga tomorrow or maybe exercise bike if I'm feeling like cardio (I'm usually not feeling like cardio, and have really let that slide lately!).
07-16-2013, 11:58 AM   #555
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Update 7/16/13: Well, I think the weather is forcing me to do cardio. On a nice summer day, I like to go outside on my breaks and sit in the sunshine and read. It's so ridiculously warm and humid here lately though that going outside has become miserable. So I'm going to go hit the exercise bike in the basement gym on my lunch instead. The gym is the coolest area of the building, and even though I get warm when exercising, it'll still be far more pleasant than venturing outside. My guts like to cramp up on warm and humid days, so I figure this is just me being nice to my guts, right?

I've been confused (even more so) by my symptoms lately. Yesterday I hit the gym for weights and felt good afterwards. Ate a nice dinner and the guts were pretty quiet. Then I had a whole lot of d just before bed, and there were 3 undigested Delzicols in my poo. That's a new record for me, and I'm not even sure how it's possible. I take 2 Delzicols 3x a day. So I take it when I first wake up, around noonish, and around 5 PM. Yesterday's episode apparently means that the noon Delzicols just sat there not digesting and somehow met up with the 5 PM Delzicols? And they all came out at once. Bleh, I don't like knowing that my guts are that dysfunctional. And that they can be that dysfunctional when I'm feeling relatively well? It's all so strange.

So yeah. I have my hip MRI on Monday, to see if I have inflammatory arthritis in my sacro-iliac joints (it's kind of humorous to me that I seem to have issues with my ileum and my ilia! Ha ha). After the MRI, I'll be calling my GI to update him on my symptoms and to request that he order a colonoscopy for me. I'm so not looking forward to it, I seem to always get severely dehydrated from prep which is by far the worst part for me, but I'm not getting better even though I'm giving my abdo muscles a break. It's a flare or it's something else, but whatever it is, it needs looking into. I have a GI appointment on Aug 7th as well, so hopefully by then I'll have the MRI results and we can discuss what that means as far as my probable IBD. My rheumy said that if it I do have inflammatory arthritis, then it's "definitely" being caused by the IBD, so we'll see what my GI has to say about that.
07-16-2013, 07:20 PM   #556
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Good grief Cat! You need some kind of answer!
07-17-2013, 12:21 PM   #557
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Ha, I know, I need answers for pretty much all my medical issues. I still need to know what kind of IBD I have, where it's located, if it is currently flaring, etc (presuming it is indeed IBD!). I need to know what kind of arthritis I have and what's causing it. It'd also be nice to know why my GERD is so severe - I have a hiatal hernia but it's "small & sliding" so it shouldn't be causing such severe symptoms like what I experience. Oh, and just for fun it'd be nice to know why I get migraines, why I have benign tumors on my liver, and what on earth is going on with my lips lately (they're red, numb, and the skin peels off - it was suggested that it may be a vit B6 deficiency, and B6 seemed to help for about a week, but now the lips are getting bad again in spite of B6 supplementation). You know, all that fun stuff!

Update 7/17/13: I rode the exercise bike for 30 mins yesterday on my lunch break. And afterwards, particularly in the evening, my legs were sore! It wasn't muscle soreness so much, it was more bone/joint pain. The knees and hips were not happy at all. That's not good. All winter long I rode the stationary bike multiple times a week for an hour at a time and had no issues - sometimes my left knee would give me pain if I rode for more than 45 mins or so, but otherwise everything felt fine. Yesterday the right knee was worse than the left, and both hips were angry too. It was so warm out yesterday, so I cranked the air conditioning and took a hot bath to try to soothe my aching leg joints. That helped a little bit but not much. I'm feeling somewhat better today but the legs still aren't super happy. This is frustrating, I feel like I'm backpedaling in terms of my fitness and ability to exercise.

Still, gotta keep moving forward as much as I can. So I'm planning to go lift weights tonight. Probably yoga tomorrow, I won't push the cardio thing too much for now. Friday, probably weights again. It's finally supposed to cool down a bit and be less humid on the weekend, so I'm tentatively hoping that we might be able to take the kayak out for a bit at some point. So far this summer we've paddled the 2 easy creeks in the city (they're relatively short and with very little current). There's one creek that's longer and has stronger currents and is just generally more challenging to paddle, and I'd love to give it a try soon if I'm feeling well enough. It starts in a suburb and sort of meanders out into the country, so if I had to hop out and go to the bathroom in the woods, that would be more of a possibility with this creek than with the easier urban creeks. So, that's my hope. I'm not overly optimistic that it'll happen, but it would be really nice.

And Monday is my MRI! I kind of want to make my hips hurt beforehand as I feel like that's my best shot at something showing up. The best way I know of to make my hips hurt is to go jogging, and it doesn't take much (1 mile of jogging will put me in bad hip pain for days & days - the way I'm feeling lately, probably 1/2 mile or less would be enough to cause significant pain). I am starting to sound like a masochist in this thread what with wanting to make myself bleed before a colonoscopy and now wanting to induce joint pain, and it may be stupid or not worthwhile, but I feel like I need to do everything I can to get a definitive test result. All it would take is jogging around the block a couple times to make me have to walk with my cane for the remainder of the week - miserable yes, but if it gets me some answers then I say bring on the pain!
07-17-2013, 09:29 PM   #558
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If it'll get you some answers, bring on the pain! And yeah, to the country creek, no potty breaks in suburbia Cat!!
07-18-2013, 09:00 AM   #559
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At this rate I may not even have to jog. I woke up today with my left hip - AKA the "good" hip - in quite a bit of pain. I can walk okay without my cane but every so often it hits me with a sharp jab of pain. It feels like my hip just isn't fitting into the joint correctly today. I tried stretching it and moving it around but that didn't help at all. And now of course the right hip, the "bad" hip, is chiming in and acting up as well. *Sigh.*

I went to the gym for weights yesterday and felt great - no issues, no pain, no reflux. Everything was a breeze, I felt really strong. I worked my abs just a teeny bit (20 seconds of plank position) just to see how it'd go, and that felt okay too. My guts didn't yell at me nor give me pain. Today, though, I woke up with some pain on the right side of my abdomen. Between that and the hips, I'm not doing quite as well today. I was thinking of doing yoga tonight but I might make today a rest day instead.

Tomorrow I'm taking the day off of work so I can go to Maxwell Street Days - it's an annual event where a lot of downtown businesses have a big sidewalk sale and you can find some really great bargains. But it involves a lot of walking - downtown in my city is basically like a 6-ish block long pedestrian mall. If my hips are feeling like this tomorrow, I'm going to have to bring a cane with me to make it through Maxwell Street days. And the worst part is, usually some family members of mine from out of town will come to Maxwell Street Days here, and they're not the most understanding when it comes to my illnesses. If they see me with a cane, that just won't be good. They'll gossip about me and I'm sure they'll say mean things like I probably don't even need a cane, I'm too young to have arthritis, I'm just doing it for attention, etc. So I hope that the hot weather deters them from coming to town this year, or if they do come, I hope I don't run into them (I can usually avoid them, I have done so the previous few years). Wish me luck!
07-19-2013, 02:59 PM   #560
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Update 7/19/13: I did indeed need my cane today. Left hip and left knee are both sharply painful. And of course, as expected, I ran into people I know while shopping at the sidewalk sales. First I saw a former co-worker from like 8 years ago - she didn't say anything about the cane (she's on my facebook so presumably she's seen a few posts from me about arthritis). Then I ran into my family members, 5 of them. My aunt was the only one who mentioned the cane, she said, "Oh, did you hurt your foot?" I said, "No, I'm just having a bad arthritis day." She was like, "Oh no, you're too young to fall apart like this!" And she gave me a hug and seemed genuinely concerned. My other family members all just watched and didn't say a thing and didn't seem concerned either. I should add this is the branch of the family that feels like gluten is evil and that maybe I'm causing my own problems by eating gluten (I have been tested multiple times and do not have celiac). So I'm sure the ones who didn't say anything are gossiping about how clearly gluten has caused my arthritis.

Guts were awful this morning but a lot better now. Still, I'm mostly resting today. May go to the gym this evening.
07-19-2013, 07:34 PM   #561
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Bummer that the hip and knee were painful, were there any great bargains?
07-20-2013, 03:03 PM   #562
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There were a few bargains but not many. I got a cool pewter tarantula for $8, and my hubby got an interesting-looking board game for $5 (it was originally marked at $40). We got a couple other things too like a couple drinking glasses etc but overall there wasn't much worth buying.

I think my family already gossiped to my mom about me walking with a cane, because she called me just now and pointedly asked how I'm doing lately. She usually never asks me how my health is, so that was suspicious. I told her I have an MRI on Monday, and she was like, "So the doctor doesn't know what's wrong?" Um, no, that's why he's doing an MRI.

Hubby and I went kayaking today. I was a bit worried because I woke up having some fairly sharp abdo pains in the upper/middle right and I wasn't sure how my guts would do. Plus the fact that we wanted to kayak the more challenging river. But I decided to just go for it. So we went to the challenging river, and it was tough, but my guts behaved and we had a good time. I like this river - it's longer, and it goes between two lakes and there's a park at each lake. So at the park on the far end, we had a picnic lunch and that was really nice. We usually bring a picnic lunch, but we usually end up eating on the kayak at some point because there's usually not a good place to stop. It's not very relaxing though to eat in the boat. It was much nicer to eat at a picnic table and let the dog run around a little bit before we headed back to our starting point. It was a more challenging paddle than we usually do though, and as a result both hubby and I have really sore tired shoulders now! I feel pretty good though, haven't had abdo pains since the morning and the arthritis is better today than it was yesterday. All good stuff.
07-21-2013, 06:49 AM   #563
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Sounds good Cat! I'm glad you still feel like doing all the things you like! What have the temps been like up there?
07-22-2013, 12:15 PM   #564
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Mark, last week we had a miserable heat wave with 90+ temps and heat indexes even hotter, plus close to 100% humidity. Yuck! The heat wave finally broke on Saturday and the humidity dropped and it's been in the 70s/80s since, which is so much nicer.

I had my hip MRI today! It went well for the most part. I was nervous about it last night so I didn't get much sleep. The MRI was scheduled for 7:15 AM and my instructions said to please try to be there by 7. I got there at 6:45, filled out the questionnaire, and waited... and waited, and waited some more. Apparently, because I had an endoscopy less than a year ago, they needed a nurse to sign off giving me the okay to have the MRI (I'm not sure why that is, it's not like the endoscopy left bits of metal in my esophagus!). The tech couldn't sign off herself and the nurse was super late - she didn't show up until about 8 AM. I was like, what is the point of telling me to get there early if the nurse can just waltz in an hour late??

Other than that, it all went pretty well. When they first put me in the MRI machine, I had a genuine moment of panic. It felt like I was going in too far and the way out was too far away, like I was trapped. And it's such a small little opening in the machine - I'm not a big girl but I felt quite confined, it was like being in a coffin - I couldn't imagine being overweight and being put in an MRI machine, that would probably be terrifying! But I got over the moment of panic pretty quickly, just telling myself that I did this before (liver MRI 3 years ago) and I can do it again. I had brought a mix CD of my favorite music to listen to as well, and I had specifically made myself a fairly calming playlist, so I calmed down a lot when the music came on over the headphones. The first song was Utada's "Take 5" and I just told myself, breathe, take 5 and breathe! (Yes Mark, it was a mix of K-pop and J-pop!)

I had been afraid that, since it was a pelvis/hip MRI, that they might inject the contrast directly into my hip, but they just did it in my arm like a regular IV. I was also afraid that I might have another adverse reaction to the injected contrast like I had previously - for my liver MRI a few years ago, I got super dizzy and nearly passed out from the contrast, and when I got dizzy I had freaked out inside the machine and had to be pulled out and calmed down. I told the nurse today about that experience, and she gave me the injection very slowly, and I had no reaction this time. So all good stuff, and I feel okay.

Because I'm feeling okay, I think I'm going to head to the gym tonight. I was originally planning to take a rest day if they were going to inject my hip as I figured that'd be painful, but no hip injection and no pain means I should be fine to go lift weights. I did kind of take a rest day yesterday (I did 30 mins or so of yard work yesterday which was fairly strenuous, so that may count as a workout, but I didn't do a proper workout) and I hate to take 2 rest days in a row if I can avoid it, so I'm happy that I get to go to the gym tonight.
07-22-2013, 04:42 PM   #565
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I miss working out! No exercise for abot 6 weeks for me, nothing strenous at least until 4-6 weeks after surgery.
07-22-2013, 06:45 PM   #566
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I had brought a mix CD of my favorite music to listen to
With what?? A sony walkman?
07-22-2013, 07:50 PM   #567
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With what?? A sony walkman?
likely a Discman.
07-22-2013, 08:01 PM   #568
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Mark & Hawkeye, you two are silly. They make you wear headphones so they can talk to you and give you instructions (hold your breath, etc) while you're in the MRI machine, and you can listen to music when they're not talking to you. You can bring a CD of your own or they usually have some CDs there that you can listen to. For my first MRI, I didn't think to bring a CD, so I listened to one of theirs (Alicia Keys) and then today I did bring one of my own to listen to (yay K- and J-pop). They don't let you bring anything with metal in it into the MRI so of course no walkman/discman. It's all a special non-metal (or non-magnetic metal anyway) internal audio system thingy.
07-23-2013, 06:06 AM   #569
Dexky
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Join Date: May 2010
Location: Kentucky

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Good grief! I can't believe you tortured the MRI techs with that JK pop!! Ugh!!!
07-23-2013, 08:50 AM   #570
Cat-a-Tonic
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Join Date: May 2010
Location: Madison, Wisconsin

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Mark, I think you meant to say, "How kind of you to expose the MRI techs to new and interesting music. They're probably subjected to crap music all day and I bet it was really refreshing for them to hear beautiful music from other cultures. Cat, you have the best taste in music and you're way cool too." Ha ha!

So I've noticed that lately whenever I try to do something right, I feel worse, and if I screw up and do the wrong thing then I usually feel better. I'm in a flare or whatever this is, and I've been having diarrhea pretty much every day. I neglected to take my psyllium for like 3 days in a row... and my stools became firmer and more formed. Or, this issue I'm having with my lips - they're cracked and red and sometimes numb, and the skin peels off of them. Cindy had suggested I try supplementing vitamin B6. So I tried that and it helped a bit for like a week, but then the lips got bad again. I skipped taking my B6 for a few days too, and suddenly my lips felt much better and stopped peeling. And this is a really weird one, 2 nights ago I couldn't sleep because I was worried about the MRI. I only got like 3 hours of sleep and expected to be miserable and exhausted all day. But instead, I felt energetic and happy and fine the whole day. Last night I got a proper 8 hours of good, restful sleep - and today I feel groggy and headachey and tired and just not great. Why is my body doing this?? Maybe I should eat some popcorn and stop brushing my teeth - I'd probably end up with great digestion and pearly whites. I seriously don't get this flare. Everything about it is so very odd!
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