This was actually yesterday. Cool that there's a day devoted to educating and busting myths about sharks.It should be more than one day. (Not sure if Shark Week plays into it...That scares people sometimes.) They're amazing animals! Sunday was National Pecan Pie Day! One of my all-time favorite pies!
The weather's been much cooler than it was just over a week ago. Feels almost like the really hot weather didn't actually happen.It's been at relatively normal temps for summer here. Mid to high 70s. Occasionally reaching 80 or 82, but that's not bad. So far, I've kept up with doing one of my 2-mile walks after dinner. Hopefully, I can get to doing both of them soon. Walks are more enjoyable considering how cool its been, too.
I scheduled an appointment to see my gastroenterologist on the 31st, a few days ago. She wanted me to make it for the end of the month, and that was the closest one they had anyways. She wants me to get a blood test done a few days beforehand. It's not only to narrow down what I have (either Ulcerative Colitis or Crohn's Disease), but to see how the results have changed in the last month. That also has to be factored in for my 'treatment'.
I'm really nervous about it all.Scared, since I don't know what to really expect. Looking up UC and Crohn's online is overwhelming, scary, etc. It won't be the same compared to talking to someone who's an expert at stuff like this. Although, I've already agreed partly with an article that was titled: "11 Things You Should Never Say to Someone Who has IBD". IBD is Inflammatory Bowel Disease, which is what I have. There are 2 main types: UC and CD, and then some more at least within CD. (Plus, one called Indeterminate Colitis. When they can't figure out which one you have...) But, in general, they are all IBDs. IBDs are also autoimmune diseases, so essentially my body's attacking itself.
One of the points really struck a chord with me. Especially with how some people were while I was being tested/seen by docs. That was you should never 'suggest' a special diet to someone who has it. (Like Paleo, Gluten-Free, Atkins, etc.) One of the experts said this can do a lot more harm than good. Especially, considering food is not the trigger. Although, what you eat during a 'flare' can ease symptoms, it doesn't do a thing to prevent it from happening. You're essentially just treating a side effect. Not only that, but it wouldn't be smart to limit certain things you may be lacking or deficient on. A lot of people end up needing an increase in vitamins, calories, and/or other nutrients just to stay healthy with their IBD. They also said that it depends on the individual on what will make them feel worse or not, since it varies so much with people. They said that many people with IBD have already gone through a trial and error with food. It also made me feel a bit odd that I had something I didn't know yet, and others were suggesting those diets. Wouldn't it be best to do that after I find out what I really have first?Even then, unless I say it's getting worse or something, why bring that up?
I've gotten back to being active on PatientsLikeMe, too. I think mainly because I'm so nervous, this is so new to me, and seems like I'll want it once I really start treatments and such.It's basically a health social networking site. Patients and caregivers can input test results, go on the forums, log in how they're doing, take questionnaires to determine how they are doing overall, list treatments, list conditions, list symptoms, etc. It's kind of like a hub of people with health issues helping each other. Or, at least learning from each other. Also, just making friends with people who are going through similar things can be nice.The site itself does research on what info people post, and that's sometimes sent to medical professionals. They can see what's more common, what treatments might be best, etc. It's a pretty handy tool for everyone. When I was inputting some of my more recent test results, I kept getting warnings.Most of them saying that it was beyond their normal range. Some said it was below. Yay! Another reminder that they weren't 'normal'...I looked briefly at their 'Digestive and Intestinal' forum. It's interesting. Some people are in the same boat as me at the moment, with not knowing exactly what you have and waiting to do certain things to determine it. Some are much worse, and are sharing their horror stories about it. Some are sharing good news. Seems like a mixed bag.The only problem with the site is they're still missing things. Certain treatments, symptoms, etc. In order to list the missing ones, I have to message one of the admins and ask if I can do it. But, it's constantly improving with user feedback, so it's only a matter of time for those to be sorted out. I have 8 followers so far. 1 of them started following me a couple of days ago.I have about 16 'conditions' listed. You can choose your primary ones. When I'm officially diagnosed I might switch my main primary condition to that. Simply because it's giving me a much harder time right now, and seems a bit more complicated. (My current main condition is controlled well with meds, and I haven't had issues with it for a while.)
Also, noticed my appetite has decreased. For a while, it had increased by so much, I was dreaming about food.Very hungry, and thinking about it often. For the last few days its been kind of the opposite.I'll feel hungry and anticipate eating, but I'll get through a couple of bites and suddenly not want to eat more. So far, I've been able to finish everything, but it feels almost like a chore halfway through now. I don't want it to feel that way. I love food!I'm even getting back to the way I like to eat. Having it in a certain calorie range every day. Basically having 5 small meals. Even with that, it's hard to get myself to finish them. I don't think I've ever had this problem. I hope it doesn't get worse, and maybe it'll get better soon on its own? I'll just keep working on getting through them for the time being...
I have another weird rash like thing on my side. It was really itchy yesterday, but today it seems to be ok. It might not have to do with it, but it does worry me a bit. Seems like my nervousness is showing up with me shedding more hair than usual.I have long curly/wavy hair, so it's normal to see some of it coming out throughout the day. But, this seems more so. Stomach occasionally feels like its got a ton of pins rolling around inside. Sometimes when I lay on my side, it feels like my guts are sliding out. That one's more weird than anything. Also, I'm getting mini leg cramps every time I lay down. It happens no matter what position I'm in while lying down. Makes it very difficult to sleep.Sometimes they build up into full-blown leg cramps, and cramp up for at least 5 minutes at a time. Really painful. Might be worse than when I kept getting them as a kid. I'm also sneezing a lot.That's getting pretty annoying. All these put together, just seem really weird to me. I looked up to see if people with IBDs get nasty leg cramps, and apparently since we're losing so many nutrients, it's pretty common. Many have to take supplements for it. Sneezing might be a part of it, too. I really didn't realize how much this thing could affect me. Makes me more anxious to see my gastroenterologist. Also, I feel taking ibuprofen might irritate things further, so I'm avoiding it. (It could mess with my stomach and possibly make any inflammation I have worse...) Even though I'm in a lot of pain.I've read that Tylenol is best for it, but I also want to ask her first.
Called my grandpa a few days ago just to see how he was. I think the last time I had called was in late January. He seemed upset that I didn't call him sooner to tell him about what's going on with me.I didn't want him to worry. He said it would have been worse for him if I hadn't told him, and he found out some other way. He had a lot of questions. Since I haven't had the appointment yet, I couldn't answer too many of them.A lot of the stuff I did share with him, he said it sounded really complicated. Yep, it definitely looks like it is. He wants me to tell him right away about the test results and about what happens at the appointment. I didn't expect him to say that. But, it's understandable that he'd want to know what's going on, too.
I started a questions list that I'll go over with my gastroenterologist. Hopefully, it won't be too many and she'll be able to answer most of them. One of them is about doing sit-ups. I want to get back to doing them, but knowing that the area is inflamed down there, it doesn't seem wise. If I can't do them, I'm hoping she can give me alternatives.Also, started a food/health journal manually through 'notepad' on my computer. A lot of the apps that are IBD related through the iPhone want to know when you were diagnosed before you can do a food diary. So, temporarily, I'm doing one manually for myself. I'm trying to get into details. I haven't listed the calories for each meal, but I could try to in the future. I'm mostly writing when I eat, what I eat, 'bathroom' stuff (and when that happens), how I feel, anything new, etc. It's been interesting already.
I'm really close to finishing the manga version of Hitman Reborn. Kind of sad, because I like it a lot. It's also really long. Kind of the same feeling I had when I finished Pandora Hearts. That was a great one, too. With both series, I didn't want them to end.And, it seems like they both can be endless with the way the plots were unfolding. I think HR is actually longer than PH (although, the chapter lengths are shorter), which makes it even crazier to me that I'd be finishing it soon. I think I only have 1 or 2 more chapters left. I'll most likely finish it tomorrow. I've liked both the anime and manga versions of it. Sad that they didn't continue the anime, because there was quite a bit more of the story to be told. Some fans are still holding out for them to continue it. I don't know why they stopped. Even if they had caught up to the manga, they could have gone on hiatus until the manga was further along, like many shows do. I also like that they had slight differences, and that made them both interesting. Now the only other really long series I'll be reading is Kuroshitsuji or Black Butler. I'm current on it, too. I don't think Ao no Exorcist or Blue Exorcist is nearly half as long. Plus, Ao no Exorcist is REALLY slow with updates now. I really like Kuroshitsuji, though. I hope it doesn't end soon.It's another series that seems like it could go on forever.