Decided to make myself go to bed earlier than I have been. I've been tempted to stay up late lately because of the pain. Instead, I can go through the pain in bed while trying to fall asleep...It's better than doing it later, I suppose. I don't want to take the extra strength Tylenol too often, which puts me in a dilemma. Is it bad enough to need it or not? It only keeps the edge off. It's better than nothing, though. I managed to go to bed and get up at a decent time last night/this morning. Yay!
My throat's getting worse, too. More difficult when I lay down. It feels like it's squeezing more now. I've choked on my pills a few times. Not the huge ones (Lialda), but the normal-sized aspirin-shaped pills (Lamotrigine). I guess because they're wider? It tastes nasty when it gets stuck. Feels like there's more stuff in my throat. Not food, just like it's stuffed or something. Takes me a while to eat and drink, which is getting annoying. The 27th feels far away with this thing. (When my upper endoscopy/colonoscopy is.)
Almost done with the 2nd level of Verbs 1 in Duolingo's Korean course. There have been a lot of weird sentences. Like, the animal writes a message, I don't throw my friends, the men fall down together at the library, the cat and dog speak Korean to each other, etc. What's up with most things centered on the library, park, or sea? Makes it interesting, though.
Read more of MAR Omega. Nanashi made an appearance. I remember him from the anime. This takes place after the first manga series (which is what the anime was based on). He's still a thief. They also met the one that was the ref of the tournament before. He has a weird name, and pretty much everyone in his village looks the same. Except for the royalty, who look more like monsters. All their names are similar, too. To me, those creatures look like yoda. Might have been based on him. Fun to see old characters again. Apparently the 'Omega' part is based on a system of the same name. Having all of Babbo's stones will be part of the system that'll give his memories back.
Finished cleaning up the full-body drawing of Shadow in Photoshop. I'll thin and shape the lines better next time. I already did that with his hair, which turned out interesting. Then, I'll color him in Photoshop, too. Edited more of Alliance. Getting through a lot of it.
Had corned beef, potatoes, cabbage, spices (from the beef's package) and carrots all boiled together for St. Patrick's Day dinner. My parent made it. It was really good. I usually think of it as like an Irish Heritage Day. Celebrating St. Patrick himself would be weird for me. I'm part Irish, so it's like I get in touch with some of my roots. Even though that dinner is considered an Irish-American one (I've heard not many actual Irish people eat it like that), that also plays into my family background. It's our usual dinner for the holiday. An easily digestible meal, which is good for my gut issues. We sometimes listen to Irish music, I sometimes play them on my clarinet (that would be difficult for me right now), sometimes read Irish poems, etc. during the holiday. Didn't do any of that this year. We did have raisin soda bread for 'dessert'. I usually like the savory kind, but they had a sweet version at Safeway. So, we tried it. It was encrusted with sugar and saltier than usual. It was a bit too sweet and salty for me. Not as dense as usual either. I'll have more to help finish it, though. We do have a savory version as well. So, the good stuff after this sweet one.
Monday, March 18, 2019
Tuesday, March 12, 2019
National Pancake Day!
This one was actually created by IHOP. (I think there are a couple of them.) Pancakes are free there today. People can donate to charities that help children battling illnesses. Haven't been to IHOP in a long time. I should have made pancakes for breakfast...I have that banana caramel pancake mix still. Pancakes can be pretty versatile. They can be sweet and/or savory. My faves are blueberry, chocolate chip with bananas, cinnamon roll, spinach, green onion, and more. I often like them by themselves, but syrup is good too. There's a variety out there for that as well. I currently have maple praline syrup that I've put on it sometimes. I hate globs of butter on it. It doesn't need that sort of thing.
Went to my gastro appointment on Thursday. The Digestive Health Consultants center has an endoscopy and colonoscopy department right there in the same building. I thought that was cool and convenient. Much closer than the last place I went for that. The intake form was interesting. It was on in an iPad. Handy, except for when I had to sign some of it. They should have given me a stylus or something. My signature ended up looking weird. I'm glad they had 'other' as an option for the 'sex' part.
I think I like her a lot. She has a good sense of humor, yet is serious about what's been going on and my concerns. I've only seen one other actual gastroenterologist with an MD. I've seen a nurse specialist and physician's assistant in between. They weren't very helpful, and even my new gastro was surprised about how they treated me. That first gastro had a very heavy accent, and I felt bad that I had to ask her to repeat things so often. She was good at first, but stopped communication with me at some point. The new gastro doesn't have an accent like that and speaks clearly. Doesn't dumb things down too much, yet asks if I'm not familiar with something.
She's very concerned about my throat, too. She diagnosed me with dysphagia. That means difficulty swallowing. In my case, it's painful as well. Hard to eat, drink, and speak. I'm surprised by my voice being affected. It's increasingly becoming hoarse. Feels like there's always something in my throat. Dysphagia's not just an annoyance. It can cause a lot of complications, like it's easier to choke, some people need their throat stretched, some have to have a feeding tube, etc. I was told to eat as normally as possible, soft foods are best, take smaller bites, and chew more.
She didn't tell me this face to face, but in the after visit summary, she gave possibilities on what it could be. It tends to be a symptom of something else. Here are those possibilities: esophageal Crohn's, peptic stricture, eosinophilic esophagitis. We were speculating whether it could be related to Crohn's, so it wouldn't surprise me if it was that type. I don't think it would be a stricture. Looking up the last one's symptoms sounds an awful lot like what I'm experiencing. I remember I had issues with my eosinophil (a type of white blood cell) count when I first started having symptoms of the colitis. So, it's not too far a stretch to think that I might have something related to that. I've read that you could have a normal blood test result for the eosinophil count and still have this. They apparently gather and attack the esophagus, and usually don't show up with that test.
She also wrote that I still have colitis symptoms despite being on Lialda. She took me seriously with that and even said there's obviously something going on. She said she could tell just by looking at me and doing a short physical exam. I mentioned my stiff painful joints and muscles, and she said that was another sign that the colitis may be active. Especially if it's getting worse.
She asked me if I've ever been tested for Celiac disease. I haven't. She said we should test it to make sure, since I could have colitis and Celiac at the same time. Some patients are like that. I hope not. I don't want to give up gluten. I love it...
She ordered a bunch of blood tests. About 7 vials of varying size in total. I almost couldn't stand to sit there for so long. Most of it was for Celiac testing. That took longer than the others. I have most of the results back, and they're all normal. A few are much higher or lower than my personal norm, but within the range. Not sure how to take that. For the specific ones they use to detect Celiac, so far, they're within normal range. However, 2 of them are really low. They say for both of those if it's below 20 units, then it's not positive for it. One of those is at 3 the other's at 6. The 3 one especially looks weird. I added that one's result into Patients Like Me's charts, and they flagged it as too low. That concerns me a bit more. I don't want to be deficient in those antibodies. They didn't flag it on the test results themselves. Seems like something to bring up with her. Looking at these results as is, it seems like I don't have Celiac at least. I think there are a couple more tests I'm still waiting on.
She agreed to doing an upper endoscopy along with the colonoscopy. She said at the very least the only way to see what's really going on with my throat is to scope and take biopsies of it. I also read that that's the only way to diagnose eosinophilic esophagitis. There is no reliable blood test for it. She'll take a look at my stomach/duodenum, since last time it indicated something was going on with it. (They said it was a certain gastritis that is common with people who have Crohn's.) She'll look at and take biopsies of part of my small intestines not only to see if there are signs of Crohn's, but to also check for Celiac. I've read that even if blood test results are negative, if it's just starting/mild it'll only show up in biopsies or looking at it with a scope. So, yay! There's still a possibility...I don't want ee, Crohn's/colitis, and Celiac all at once. Makes it even scarier. She'll also check to see how my colon is doing. If it's not flaring right now, the scarring must be worse or something. I'm having awful intestinal cramping often now. A plus for the endo/colonoscopy is that both will be done by her. In the past it was a different gastro that did them. Not my personal one. This way she can have a more in-depth/personal look.
I'm glad she agreed to letting me do the Miralax/Gatorade prep. However, theirs is a bit different than last time. Instead of just 4 pills of dulcolax in addition to that Miralax solution, she wants me to have 2 bottles of magnesium citrate. (1/2 a bottle one day, 1/2 the next, and a full the day after that.) It's a liquid laxative. I've read that it's palatable but not good. Some people have said if you get the lemon it's like concentrated salty lemon juice. Some have said it tastes like a strong version of Sprite without the fizz. They also said it's really powerful stuff. Most only had 1/2 a bottle. I'm a bit scared of it now. Why do I need something so powerful in addition to the Miralax? Seems like overkill. At least they have me on the liquid diet for a shorter time. 1 1/2 days rather than 5 or 6 days. A lot less to prepare for on that front. 5 or 6 days were really difficult after the 2nd day. It'll be the same amount of Miralax (14 days worth) and Gatorade (64oz). That's a lot of fluid. The Miralax part of it gets difficult towards the last couple of glasses. Maybe I didn't mix it enough last time? We'll see. It's nothing like that vile Golytely stuff, though. That was like the worst thing I've ever tried to ingest.
I've been having such a difficult time sleeping with all the pain and other symptoms, which makes me get up later than I'd like. I think I said something similar on here last time, but that seems to be getting worse. Hard to get motivated while feeling like this, too. I'll try going to bed earlier, even if it's painful. I'll take more extra strength Tylenol before going to bed, as well. I have been doing things like studying Korean, editing Shadow's full-body drawing, and a little editing of Alliance.
Someone on AVEN read my last blog post on here and messaged me. It was an incredibly long message that looked almost like a college research paper. She was in her 60's and I don't think she was used to online forums and how people usually interact on there. She also listed 'alpha female' as her gender. Lots of mentions about being a feminist and a 'retired' minority advocate in her profile. Got the sense she was a terf just from that. I had commented on a post about feeling conflicted about International Women's Day when you're an afab trans person. I agreed to the op's first post. She found me through that comment. She thought I had conflicted feelings towards my body and was 'confused'. Nope. I'm not confused and don't really have conflicting feelings about my body. My body's mine, but there are parts of it that shouldn't be there. I like pretty much everything else about it. It makes me me. It's pretty interesting to learn about the inner workings of it. I even like looking at my blood test results. It was cool to hear and see my heart in an ultrasound. I love that stuff, actually. She said how sorry she felt about my health. (Used odd wording and I don't think she knew what those words meant...) Went on and on about how she knew better about saving her partner than the doctors did. Also, about how awful the UK health care system is. I don't know...I've heard that it's actually better than ours. She offered to help me figure out my nutrition stuff. Yeah, I really need unsolicited advice from a stranger who doesn't really know much about my condition. I told her that I'd rather trust my medical team and maybe (a big maybe, but more likely) people who have IBD as well. She mentioned IBS by the way when talking about IBD, seemingly to think they were the same. They're very different things. I couldn't believe or actually follow half of what she said. I have a feeling she not only wanted to give me poor health advice but to tell me I'm really just a 'confused' woman. She did say she 'battled' with her own gender and realized it was because of child abuse and trauma, and she believes that's also what causes diseases like IBD. Sure...That's not right at all. Abuse and trauma had nothing to do with me being dysphoric and having colitis. They just happened. A good way to tell people it's all 'in our heads' and you must have been damaged in some way before. It's all your own fault for having an autoimmune disease. Not cool, and looking at some of her other posts, that's the message (on both) she keeps trying to push even if it has nothing to do with the topic. I blocked her on there when she practically ignored what I said in my message to her. She replied with more weird stuff. I hope she doesn't hurt others, though.
Went to my gastro appointment on Thursday. The Digestive Health Consultants center has an endoscopy and colonoscopy department right there in the same building. I thought that was cool and convenient. Much closer than the last place I went for that. The intake form was interesting. It was on in an iPad. Handy, except for when I had to sign some of it. They should have given me a stylus or something. My signature ended up looking weird. I'm glad they had 'other' as an option for the 'sex' part.
I think I like her a lot. She has a good sense of humor, yet is serious about what's been going on and my concerns. I've only seen one other actual gastroenterologist with an MD. I've seen a nurse specialist and physician's assistant in between. They weren't very helpful, and even my new gastro was surprised about how they treated me. That first gastro had a very heavy accent, and I felt bad that I had to ask her to repeat things so often. She was good at first, but stopped communication with me at some point. The new gastro doesn't have an accent like that and speaks clearly. Doesn't dumb things down too much, yet asks if I'm not familiar with something.
She's very concerned about my throat, too. She diagnosed me with dysphagia. That means difficulty swallowing. In my case, it's painful as well. Hard to eat, drink, and speak. I'm surprised by my voice being affected. It's increasingly becoming hoarse. Feels like there's always something in my throat. Dysphagia's not just an annoyance. It can cause a lot of complications, like it's easier to choke, some people need their throat stretched, some have to have a feeding tube, etc. I was told to eat as normally as possible, soft foods are best, take smaller bites, and chew more.
She didn't tell me this face to face, but in the after visit summary, she gave possibilities on what it could be. It tends to be a symptom of something else. Here are those possibilities: esophageal Crohn's, peptic stricture, eosinophilic esophagitis. We were speculating whether it could be related to Crohn's, so it wouldn't surprise me if it was that type. I don't think it would be a stricture. Looking up the last one's symptoms sounds an awful lot like what I'm experiencing. I remember I had issues with my eosinophil (a type of white blood cell) count when I first started having symptoms of the colitis. So, it's not too far a stretch to think that I might have something related to that. I've read that you could have a normal blood test result for the eosinophil count and still have this. They apparently gather and attack the esophagus, and usually don't show up with that test.
She also wrote that I still have colitis symptoms despite being on Lialda. She took me seriously with that and even said there's obviously something going on. She said she could tell just by looking at me and doing a short physical exam. I mentioned my stiff painful joints and muscles, and she said that was another sign that the colitis may be active. Especially if it's getting worse.
She asked me if I've ever been tested for Celiac disease. I haven't. She said we should test it to make sure, since I could have colitis and Celiac at the same time. Some patients are like that. I hope not. I don't want to give up gluten. I love it...
She ordered a bunch of blood tests. About 7 vials of varying size in total. I almost couldn't stand to sit there for so long. Most of it was for Celiac testing. That took longer than the others. I have most of the results back, and they're all normal. A few are much higher or lower than my personal norm, but within the range. Not sure how to take that. For the specific ones they use to detect Celiac, so far, they're within normal range. However, 2 of them are really low. They say for both of those if it's below 20 units, then it's not positive for it. One of those is at 3 the other's at 6. The 3 one especially looks weird. I added that one's result into Patients Like Me's charts, and they flagged it as too low. That concerns me a bit more. I don't want to be deficient in those antibodies. They didn't flag it on the test results themselves. Seems like something to bring up with her. Looking at these results as is, it seems like I don't have Celiac at least. I think there are a couple more tests I'm still waiting on.
She agreed to doing an upper endoscopy along with the colonoscopy. She said at the very least the only way to see what's really going on with my throat is to scope and take biopsies of it. I also read that that's the only way to diagnose eosinophilic esophagitis. There is no reliable blood test for it. She'll take a look at my stomach/duodenum, since last time it indicated something was going on with it. (They said it was a certain gastritis that is common with people who have Crohn's.) She'll look at and take biopsies of part of my small intestines not only to see if there are signs of Crohn's, but to also check for Celiac. I've read that even if blood test results are negative, if it's just starting/mild it'll only show up in biopsies or looking at it with a scope. So, yay! There's still a possibility...I don't want ee, Crohn's/colitis, and Celiac all at once. Makes it even scarier. She'll also check to see how my colon is doing. If it's not flaring right now, the scarring must be worse or something. I'm having awful intestinal cramping often now. A plus for the endo/colonoscopy is that both will be done by her. In the past it was a different gastro that did them. Not my personal one. This way she can have a more in-depth/personal look.
I'm glad she agreed to letting me do the Miralax/Gatorade prep. However, theirs is a bit different than last time. Instead of just 4 pills of dulcolax in addition to that Miralax solution, she wants me to have 2 bottles of magnesium citrate. (1/2 a bottle one day, 1/2 the next, and a full the day after that.) It's a liquid laxative. I've read that it's palatable but not good. Some people have said if you get the lemon it's like concentrated salty lemon juice. Some have said it tastes like a strong version of Sprite without the fizz. They also said it's really powerful stuff. Most only had 1/2 a bottle. I'm a bit scared of it now. Why do I need something so powerful in addition to the Miralax? Seems like overkill. At least they have me on the liquid diet for a shorter time. 1 1/2 days rather than 5 or 6 days. A lot less to prepare for on that front. 5 or 6 days were really difficult after the 2nd day. It'll be the same amount of Miralax (14 days worth) and Gatorade (64oz). That's a lot of fluid. The Miralax part of it gets difficult towards the last couple of glasses. Maybe I didn't mix it enough last time? We'll see. It's nothing like that vile Golytely stuff, though. That was like the worst thing I've ever tried to ingest.
I've been having such a difficult time sleeping with all the pain and other symptoms, which makes me get up later than I'd like. I think I said something similar on here last time, but that seems to be getting worse. Hard to get motivated while feeling like this, too. I'll try going to bed earlier, even if it's painful. I'll take more extra strength Tylenol before going to bed, as well. I have been doing things like studying Korean, editing Shadow's full-body drawing, and a little editing of Alliance.
Someone on AVEN read my last blog post on here and messaged me. It was an incredibly long message that looked almost like a college research paper. She was in her 60's and I don't think she was used to online forums and how people usually interact on there. She also listed 'alpha female' as her gender. Lots of mentions about being a feminist and a 'retired' minority advocate in her profile. Got the sense she was a terf just from that. I had commented on a post about feeling conflicted about International Women's Day when you're an afab trans person. I agreed to the op's first post. She found me through that comment. She thought I had conflicted feelings towards my body and was 'confused'. Nope. I'm not confused and don't really have conflicting feelings about my body. My body's mine, but there are parts of it that shouldn't be there. I like pretty much everything else about it. It makes me me. It's pretty interesting to learn about the inner workings of it. I even like looking at my blood test results. It was cool to hear and see my heart in an ultrasound. I love that stuff, actually. She said how sorry she felt about my health. (Used odd wording and I don't think she knew what those words meant...) Went on and on about how she knew better about saving her partner than the doctors did. Also, about how awful the UK health care system is. I don't know...I've heard that it's actually better than ours. She offered to help me figure out my nutrition stuff. Yeah, I really need unsolicited advice from a stranger who doesn't really know much about my condition. I told her that I'd rather trust my medical team and maybe (a big maybe, but more likely) people who have IBD as well. She mentioned IBS by the way when talking about IBD, seemingly to think they were the same. They're very different things. I couldn't believe or actually follow half of what she said. I have a feeling she not only wanted to give me poor health advice but to tell me I'm really just a 'confused' woman. She did say she 'battled' with her own gender and realized it was because of child abuse and trauma, and she believes that's also what causes diseases like IBD. Sure...That's not right at all. Abuse and trauma had nothing to do with me being dysphoric and having colitis. They just happened. A good way to tell people it's all 'in our heads' and you must have been damaged in some way before. It's all your own fault for having an autoimmune disease. Not cool, and looking at some of her other posts, that's the message (on both) she keeps trying to push even if it has nothing to do with the topic. I blocked her on there when she practically ignored what I said in my message to her. She replied with more weird stuff. I hope she doesn't hurt others, though.
Wednesday, March 6, 2019
29th of Adar I
I'm nervous about my new gastroenterologist appointment on Thursday. I haven't seen anyone for my colitis in a year and a half. Just looked that up now and it's longer than I remembered. I should see someone at least every 3 months (according to the CCFA) to monitor it. That's just to check on the disease, not necessarily how the medication is affecting me. That can vary more.
Looking back at it, I apparently stopped Azathioprine in December of 2017. It wasn't metabolizing anymore. Been on Lialda ever since. Again, since no one has been monitoring me, I don't really know how helpful it's been or if it's metabolizing. I have felt like I've been flaring since July. Lialda was supposed to be the safest temporary med. My next options are biologics like Humira and Remicade. They're taken either with self-injections or infusion. These are heavier and more potent meds. I'd prefer to stay away from the self-injection ones. I get a weird thing every time I see my own blood or other health related stuff (shots, speaking about organs, etc.). It's a syndrome I can't remember the name of, but I have passed out from it. I don't need that every time I do it. Can't control it either. With the infusions you have to wait a few hours, and it's at hospitals usually. That can be a pain in different ways. I don't seem to have a problem with IV's, as long as I don't see them put it in.
I've noticed new extrintestinal symptoms, too. Most patients get them at some point, and can be a sign that they're flaring. I thought most of these symptoms were just kinks to work out or from fatigue. However, they haven't let up and, in fact, have gotten much worse. They're starting to pile up creating a snowball-like effect, and it's scaring me a bit.
I made sure to make a list to bring up with her so I don't forget. In July, a weird deep butt pain started. Leg muscles from my knees up started to feel sore at the time every time I laid down or stood up. (Still does.) A year ago, I started coughing up weird hard balls of bloody mucus. (Yeah, gross...) I didn't think much of it until that became more frequent not too long ago. Now, it goes up my throat without me coughing it up. Prompting me to spit it out immediately. Never feels like it all gets out. It wasn't a normal thing for me before this.
Roughly a couple of months ago, my jaw started to ache. It's gotten worse in the last couple of weeks. Every time I try to open my mouth to eat, yawn, etc. it hurts. The joints seem to be swelling, too. About a month ago, I started having a dry sore throat. I thought I just had a little cold, and that I'd need to wait it out. It's still there. Feels worse now. It's not bad enough to make me cough all the time. However, it hurts to swallow, food feels weird going down it, feels like I need to clear my throat every time I speak, etc.
Not long after the sore throat started, my neck was so sore and stiff I had a hard time moving it, then that suddenly went away. About a day later the joints in my hands, wrists, neck, knees, one hip, and feet were painful and stiff. They haven't eased off since. My hands have been the worst. It's harder to grip things and even wash my hands. My jaw and other areas are cracking/popping more often, too. Not only that but a couple of weeks ago muscles from other parts of my body (not the leg ones I mentioned) started to feel sore and weak. Fun combo.
About a month ago, I started feeling a searing pain around my eye sockets or outer eyelid area. Not in my eyes, but the outer skin. It's worse around my right eye. The pain has intensified in the last few days. Realized today that there's a slight red rash on parts of both areas. So, it's somewhat visible. I'm not just imagining it. I do have my eye exam next week, which should be interesting to see what they say, as well.
I'm wondering if the throat things are specifically related to the colitis. If I have Crohn's (most people I've seen have leaned towards this), it could be affecting it. Crohn's can happen anywhere in the digestive tract, including the throat. It can travel, too. They did notice that my stomach and duodenum were slightly affected in the first upper endoscopy in 2015. It could have traveled up. It wasn't nearly as bad as my colon at the time, so that's what they focused on. They weren't sure if the disease was affecting them or something else was going on. I'll ask my new gastro if I could have an upper endo along with my colonoscopy to check. The gastro I had when I was about to have my 2nd colonoscopy (2017) never answered me and didn't request it. Despite asking her several times. She had several issues, but knowing what they saw the first time, I would think it'd be logical. Even my 1st gastro suggested it when we were talking about future colonoscopies.
It's been affecting me more this week. Takes even longer than usual to go to sleep, then I end up staying in bed later than I'd like. Makes it a little more difficult to get stuff done. I'm trying to be kind to myself about it, though. Also, I've felt too tired to wash my hair lately. Did it today and felt like passing out after I styled it. Made me really dizzy for a while. At least, I got that done and feel a little better.
So far this week I've made it to the 4th level of Basics 2 in Duolingo's Korean course. Almost done with that unit. Also, started typing out some of the sentences in Korean with the translation in Notes on my phone. Noticing more patterns, might try using speech-to-text to see if I'm saying them right, and more. Might be really handy. I have been editing more of the full-body drawing of Shadow in Photoshop. Finished the back part of his hair. Edited more of Alliance.
Finished watching Radiant. It was an odd time to end the season. They mentioned at the end that there will be a 2nd one. It'll be back in October. It ended with Seth leaving Artemis for Caislean Merlin. He left Melie and Doc behind. It looked like Grimm's going to secretly follow him.
I plan to get better about being more balanced with my nutrients and still stay within my calorie range. According to MyFitnessPal, I'm usually far below my goals for protein, fiber, fat, saturated fat, cholesterol, potassium, calcium, and iron. Sugar and carbs vary a lot. Either half of where I should be for each or slightly over. Not sure about other nutrients, because that's what they show if you're not a premium member. I was surprised by some of them as I went through. I've heard many people have issues with having too much fat and cholesterol. Not making all of these goals, might have something to do with how I feel now, too. I have been told I need more protein, at least, than most healthy people because when I flare I tend to not absorb it well. It's hard to get all of them without going over the calorie range for the day...That's why I'm going to look more into foods naturally high in these, and stuff I already eat as well. Like, the tuna salad sandwich I make occasionally has a ton of protein, calcium, and iron. It's low in calories, too.
Looking back at it, I apparently stopped Azathioprine in December of 2017. It wasn't metabolizing anymore. Been on Lialda ever since. Again, since no one has been monitoring me, I don't really know how helpful it's been or if it's metabolizing. I have felt like I've been flaring since July. Lialda was supposed to be the safest temporary med. My next options are biologics like Humira and Remicade. They're taken either with self-injections or infusion. These are heavier and more potent meds. I'd prefer to stay away from the self-injection ones. I get a weird thing every time I see my own blood or other health related stuff (shots, speaking about organs, etc.). It's a syndrome I can't remember the name of, but I have passed out from it. I don't need that every time I do it. Can't control it either. With the infusions you have to wait a few hours, and it's at hospitals usually. That can be a pain in different ways. I don't seem to have a problem with IV's, as long as I don't see them put it in.
I've noticed new extrintestinal symptoms, too. Most patients get them at some point, and can be a sign that they're flaring. I thought most of these symptoms were just kinks to work out or from fatigue. However, they haven't let up and, in fact, have gotten much worse. They're starting to pile up creating a snowball-like effect, and it's scaring me a bit.
I made sure to make a list to bring up with her so I don't forget. In July, a weird deep butt pain started. Leg muscles from my knees up started to feel sore at the time every time I laid down or stood up. (Still does.) A year ago, I started coughing up weird hard balls of bloody mucus. (Yeah, gross...) I didn't think much of it until that became more frequent not too long ago. Now, it goes up my throat without me coughing it up. Prompting me to spit it out immediately. Never feels like it all gets out. It wasn't a normal thing for me before this.
Roughly a couple of months ago, my jaw started to ache. It's gotten worse in the last couple of weeks. Every time I try to open my mouth to eat, yawn, etc. it hurts. The joints seem to be swelling, too. About a month ago, I started having a dry sore throat. I thought I just had a little cold, and that I'd need to wait it out. It's still there. Feels worse now. It's not bad enough to make me cough all the time. However, it hurts to swallow, food feels weird going down it, feels like I need to clear my throat every time I speak, etc.
Not long after the sore throat started, my neck was so sore and stiff I had a hard time moving it, then that suddenly went away. About a day later the joints in my hands, wrists, neck, knees, one hip, and feet were painful and stiff. They haven't eased off since. My hands have been the worst. It's harder to grip things and even wash my hands. My jaw and other areas are cracking/popping more often, too. Not only that but a couple of weeks ago muscles from other parts of my body (not the leg ones I mentioned) started to feel sore and weak. Fun combo.
About a month ago, I started feeling a searing pain around my eye sockets or outer eyelid area. Not in my eyes, but the outer skin. It's worse around my right eye. The pain has intensified in the last few days. Realized today that there's a slight red rash on parts of both areas. So, it's somewhat visible. I'm not just imagining it. I do have my eye exam next week, which should be interesting to see what they say, as well.
I'm wondering if the throat things are specifically related to the colitis. If I have Crohn's (most people I've seen have leaned towards this), it could be affecting it. Crohn's can happen anywhere in the digestive tract, including the throat. It can travel, too. They did notice that my stomach and duodenum were slightly affected in the first upper endoscopy in 2015. It could have traveled up. It wasn't nearly as bad as my colon at the time, so that's what they focused on. They weren't sure if the disease was affecting them or something else was going on. I'll ask my new gastro if I could have an upper endo along with my colonoscopy to check. The gastro I had when I was about to have my 2nd colonoscopy (2017) never answered me and didn't request it. Despite asking her several times. She had several issues, but knowing what they saw the first time, I would think it'd be logical. Even my 1st gastro suggested it when we were talking about future colonoscopies.
It's been affecting me more this week. Takes even longer than usual to go to sleep, then I end up staying in bed later than I'd like. Makes it a little more difficult to get stuff done. I'm trying to be kind to myself about it, though. Also, I've felt too tired to wash my hair lately. Did it today and felt like passing out after I styled it. Made me really dizzy for a while. At least, I got that done and feel a little better.
So far this week I've made it to the 4th level of Basics 2 in Duolingo's Korean course. Almost done with that unit. Also, started typing out some of the sentences in Korean with the translation in Notes on my phone. Noticing more patterns, might try using speech-to-text to see if I'm saying them right, and more. Might be really handy. I have been editing more of the full-body drawing of Shadow in Photoshop. Finished the back part of his hair. Edited more of Alliance.
Finished watching Radiant. It was an odd time to end the season. They mentioned at the end that there will be a 2nd one. It'll be back in October. It ended with Seth leaving Artemis for Caislean Merlin. He left Melie and Doc behind. It looked like Grimm's going to secretly follow him.
I plan to get better about being more balanced with my nutrients and still stay within my calorie range. According to MyFitnessPal, I'm usually far below my goals for protein, fiber, fat, saturated fat, cholesterol, potassium, calcium, and iron. Sugar and carbs vary a lot. Either half of where I should be for each or slightly over. Not sure about other nutrients, because that's what they show if you're not a premium member. I was surprised by some of them as I went through. I've heard many people have issues with having too much fat and cholesterol. Not making all of these goals, might have something to do with how I feel now, too. I have been told I need more protein, at least, than most healthy people because when I flare I tend to not absorb it well. It's hard to get all of them without going over the calorie range for the day...That's why I'm going to look more into foods naturally high in these, and stuff I already eat as well. Like, the tuna salad sandwich I make occasionally has a ton of protein, calcium, and iron. It's low in calories, too.
Friday, March 1, 2019
National Peanut Butter Lovers Day!
I love peanut butter, but a little goes a long way. My fave is crunchy with extra pieces. Feels like I'm actually having something substantial. However, that's a type of trigger food for me now. Fortunately, I can have the creamy version, but it's not the same...Peanut butter's very versatile. Good in many different sandwich combos (not just with jelly), makes an awesome sauce (The Thai/Vietnamese ones are addicting!), used in many desserts, in stews, and so much more.
This is my wallpaper for March. It's some of Midoriya's (aka Deku's) class at UA in Boku no (My) Hero Academia. Deku is on the front left corner. Thought it would be a fun one. I think it's a play off of one of the ending sequences.
The month-long holidays for March are: National Celery Month, National Frozen Food Month, National Noodle Month, Irish-American Heritage Month. Some are for important causes, some are to make you appreciate things you may take for granted, and some are just for fun.
For my Jewish calendar, the main pic's of a bronze statue of people standing on a ledge and what looks like a wall on the side. It's titled Exodus. It was made in 1950. It's a little strange looking. The smaller pic's of a embroidered velvet Torah mantle from 1966. They don't feature such recent stuff that often.
For my elements calendar, it's Mercury this time. I've always found mercury interesting. They mention how dense it is and that people can float on it. They also mention how people were so into it before they realized it was toxic and could drive people crazy. They show mercury batteries, a pool of it for the main pic, an old ceramic flask for holding dental mercury, and tuna sushi mentioning how mercury can accumulate in large fatty fish like tuna.
For Korean, I've made it to level 3 of Basics 2 in Duolingo. Going faster than I thought I would. I might end up finishing before the 3-month mark I shoot for for languages. Maybe I'll go back to it in the future to study it longer. I've thought about writing out the sentences, and possibly saying them into speech-to-text to see if I'm saying them right. Also, to get sentences down. That might prolong it a little. Would be interesting to write the language out, too.
Edited more of the full-body drawing of Shadow. The lines looked too thick, so I started thinning them down with his hair. Had to zoom in closely. Might take me longer, if I do this for the rest of it, but I think it looks better already.
Edited more of Alliance. Made it to chapter 15 today. There are 20. This was much faster than I expected. Also, counted how many pages I've gone through this week. I don't usually. Went through 12 pages for the ebook and 18 pages for the print version. I've been lagging behind lately on it, but this week it seems like I got through a lot. Yay! Hopefully, next week it'll be the same or more.
My Roommate is a Cat has been great so far. They really captured how cats actually behave. Showing what life was like for Haru as a stray was surprisingly dark for a rather light-hearted series. One of her siblings died, 2 were taken in by a large family because they were curious, the cats that looked after her and her siblings were most likely killed by crows (they implied it), and she lost track of her remaining sibling. It was cool that he ended up being adopted by the girl from the pet store, Nana, that befriended Subaru. She lives in the same neighborhood. Haru was able to meet her brother when she became stuck to Nana's key chain after she had left Subaru's. She was giving him advice on how to properly feed Haru. (She was getting a little pudgy.) Subaru couldn't get the key chain off himself, and just ran after her with Haru in his arms. She asked them over so she could help Haru. Haru and her brother will get to see each other in the future. The most recent episode reminded me of one of my close friends in junior high through high school. Hiroto is essentially a male version of her, and he's a close friend of Subaru's. His behavior, personality, the way he interacts with both Subaru and Haru, usually bringing his mother's food to Subaru's (often my friend's mom would give her food and occasionally other things to give to me), etc. sounded so much like her. It was uncanny. She was like a whirlwind, but a good person too.
Youtube:
Mix:
Bleach:
Kuroshitsuji (Black Butler):
One Piece:
The month-long holidays for March are: National Celery Month, National Frozen Food Month, National Noodle Month, Irish-American Heritage Month. Some are for important causes, some are to make you appreciate things you may take for granted, and some are just for fun.
For my Jewish calendar, the main pic's of a bronze statue of people standing on a ledge and what looks like a wall on the side. It's titled Exodus. It was made in 1950. It's a little strange looking. The smaller pic's of a embroidered velvet Torah mantle from 1966. They don't feature such recent stuff that often.
For my elements calendar, it's Mercury this time. I've always found mercury interesting. They mention how dense it is and that people can float on it. They also mention how people were so into it before they realized it was toxic and could drive people crazy. They show mercury batteries, a pool of it for the main pic, an old ceramic flask for holding dental mercury, and tuna sushi mentioning how mercury can accumulate in large fatty fish like tuna.
For Korean, I've made it to level 3 of Basics 2 in Duolingo. Going faster than I thought I would. I might end up finishing before the 3-month mark I shoot for for languages. Maybe I'll go back to it in the future to study it longer. I've thought about writing out the sentences, and possibly saying them into speech-to-text to see if I'm saying them right. Also, to get sentences down. That might prolong it a little. Would be interesting to write the language out, too.
Edited more of the full-body drawing of Shadow. The lines looked too thick, so I started thinning them down with his hair. Had to zoom in closely. Might take me longer, if I do this for the rest of it, but I think it looks better already.
Edited more of Alliance. Made it to chapter 15 today. There are 20. This was much faster than I expected. Also, counted how many pages I've gone through this week. I don't usually. Went through 12 pages for the ebook and 18 pages for the print version. I've been lagging behind lately on it, but this week it seems like I got through a lot. Yay! Hopefully, next week it'll be the same or more.
My Roommate is a Cat has been great so far. They really captured how cats actually behave. Showing what life was like for Haru as a stray was surprisingly dark for a rather light-hearted series. One of her siblings died, 2 were taken in by a large family because they were curious, the cats that looked after her and her siblings were most likely killed by crows (they implied it), and she lost track of her remaining sibling. It was cool that he ended up being adopted by the girl from the pet store, Nana, that befriended Subaru. She lives in the same neighborhood. Haru was able to meet her brother when she became stuck to Nana's key chain after she had left Subaru's. She was giving him advice on how to properly feed Haru. (She was getting a little pudgy.) Subaru couldn't get the key chain off himself, and just ran after her with Haru in his arms. She asked them over so she could help Haru. Haru and her brother will get to see each other in the future. The most recent episode reminded me of one of my close friends in junior high through high school. Hiroto is essentially a male version of her, and he's a close friend of Subaru's. His behavior, personality, the way he interacts with both Subaru and Haru, usually bringing his mother's food to Subaru's (often my friend's mom would give her food and occasionally other things to give to me), etc. sounded so much like her. It was uncanny. She was like a whirlwind, but a good person too.
Youtube:
Mix:
Bleach:
Kuroshitsuji (Black Butler):
One Piece:
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