This was a few days ago, but I love pizza!
Nice that there's a day for it! There are so many different types/toppings out there. I love cheese, BBQ chicken, Greek (with feta, pesto sauce, artichokes, kalamata olives, etc.), chicken Alfredo, vegetarian (without mushrooms), and many other pizzas. Occasionally, Mom and I would make our own personal pizzas. We'd get premade crusts, whatever sauce we wanted, vegetables, cheese, etc. It was essentially whatever we felt like putting on it. Had some interesting combos, and it was usually different each time.
I know the local international market makes its own pizza. They also sell their pizza dough and sauce. The dough part seems even more from scratch. I don't think I'd do very well with rolling out, and getting the right thickness.
They also feature a new pizza every month. Pizzas like Thai chili, baked potato, jalapeno popper, taco, etc. I think the first time I had BBQ chicken pizza was from there.
The month-long holidays are: Canned Food Month, National Cherry Month, National Hot Breakfast Month, Potato Lovers Month, Barley Month, National African American History Month. Some are for important causes, some are to make you appreciate things you may take for granted, and some are just for fun. Cherries are one of my fave fruits! I love potatoes, too! I don't think canned food gets as much credit as it should.
There are healthy and unhealthy type of canned foods. Different types of cans, too. So, people can't really say they're all bad. They can be very handy. Although, I prefer frozen type food for things like vegetables to have on hand. My Pusheen calendar has Pusheen laying sideways on a laptop with hearts coming off her. She seems to be smiling, too. Underneath it, it says: I need you, Valentine. Just below that, she's sitting with a giant pink bow on her head. I don't particularly like this one as much, but I know they felt the need for a Valentine's Day thing...
Still haven't gotten a Jewish calendar for this year. I might soon, though. I can still see some of it on the calendar on my phone and online. It's just not as easy as looking over and seeing it immediately. Also, the calendar on my phone isn't very detailed. We're in the month of Shevat right now. It's the 5th month of the Jewish calendar. The last holiday was Friday night, and ended Saturday night. We got kind of a double holiday, since Shabbat happens during that time every week. It's Tu B'Shevat, or our New Year for the Trees. Some call it the Jewish Arbor Day. Tu B'Shevat basically means 15th of Shevat in English. I say basically, because Tu is technically not a word, but stands for 15 in Hebrew. I read that it's like using Roman numerals, similar to IV July for 4th of July. Anyways, this is celebrating the trees, and nature. It wasn't from the Torah, and there aren't really set laws or customs for it. It's become popular for some people in the last few decades to do seders (basically a ritual meal that goes in a certain 'order'. Seder means order), which that particular seder actually originated in the 16th century by kabbalists. It's somewhat similar to a Passover seder. Each fruit, nut, and wine has a special meaning to it. People are encouraged to try a new fruit or nut. People go through different seasons with the wine. You end up having about 10 different fruit/nuts, and 4 glasses of wine. Since I can't drink wine, I would have different colored grape juices. I really enjoyed the ones I've gone to. I think my mom introduced it to the congregation we were apart of, and they still do it. The other synagogue seems to have gotten into it, too. I'm not sure why my mom had started doing it. Maybe after reading about it online? She did print off the free online haggadot for it. It's still cool. Many people plant trees, hike, and eat pickled or candied etrog (a type of citrus). Some eat from the Shivat Haminim (Seven Species), which are: wheat, barley, grapes, figs, pomegranates, olives, and dates.
I finally decided on when the new local ace group will meet. I didn't get many responses to what I suggested, so it was essentially all on me. That makes it harder for me to decide...
Someone did choose the weekend on one of the polls. So, I went with that, and decided on Saturdays. I think that would be one of the best days, anyways. I also saw that same person was ok with it every other week, and I'm used to groups doing that, so why not? There was a tie between 2 cafes. I know it was even more so than with just the people who responded. So, I decided to have the first meeting at the one closest to where I live. The 2nd meeting will be at the other one, and we can decide which one we like more during it. Both close at 5pm that day, and I think the one who responded to that part of the poll indicated they wanted it during the afternoon. So, I went with 2-4pm. This way if people still want to chat or something longer after the meeting, they can. I'm a little unsure about the dessert part at the moment. I thought it would be nice to end the meetings on a positive note with a dessert potluck. I'm unsure if the cafes would let us bring food in...
Maybe for now we can just grab a dessert from the café itself towards the end? I'm getting excited about actually starting it!
It'll start next month. This month is a little weird. I wonder how many will show up? I have a lot of topics we can talk about already floating in my head. Just in case people can't think of any. Also, ideas of what we can do during some of the future meetings. Like getting to know you events, events raising awareness somehow, fun ones, etc. I think that stuff is also important for building a community, and to educate others as well. There's some ignorance even within the community about lesser known orientations and other types of aces, and more so in general with the greater LGBTQ+ community. I've been sick with some sort of flu (or cold?) since last Sunday. I had a fever during most of that day. Ever since, I've felt really dizzy, have come extremely close to throwing up, very runny nose, nose sometimes closes up, throat's dry, coughing with nothing 'clearing', more tired than usual, ears hurting, guts hurting more, eyes/throat/nose feeling very sensitive to the air (like the air's full of sand or something), etc. I still feel like a big mess.
Some of the old symptoms from when we knew the colitis was active have come back. That started a couple of weeks after the colonoscopy last month. If I'm still in remission, why? I haven't been 'regular' since before the very first symptoms I had of the colitis. That's saying something. Even if that's the only thing people are looking at. I've tried many things since then to get it back that way. They say if you're in remission, even with scarring, you don't have that problem. Just looking at this, it's frustrating.
Saw my gastro (who's a nurse) last Monday. I was told by the gastro (actually an MD) who performed the colonoscopy that the nurse would tell me about treatments to help with the scarring in my colon. Treatments can be meds or even surgery if it's bad enough. To be honest, I'm actually debating if I should just have the whole thing removed and have the pouch.
It's a year of recovery, though. Eventually they can have another surgery to have an internal pouch, so you don't even have to think about it. My problem with it is not only about the current scarring, but if it does become active (if it truly isn't at the moment) again, it might attack the scarred area. That scarred area is throughout the entire thing. That would be like a double whammy, and things could get much worse. If I actually have ulcerative colitis, I won't have to worry about it after losing my colon since it mostly only attacks the colon. (Sometimes it will attack the anus. Some people actually have to have that sewn shut.
) We still don't know if it really is UC or Crohn's. If it's Crohn's, it might come back in other areas, but it would slow it down considerably. If the pain I'm experiencing right now is mainly due to the scarring, that's another reason to consider surgery, too. Anyways, she didn't touch much on treatment. She said she thinks I'm having absorption issues with it. Saying the vascularity thing plays a role with that. Yet, after reading about it from several sources, it just means the veins are enlarged because of the previous inflammation. None of them mentioned absorption, but ok...
She didn't really mention what to do about it. When I knew the disease was active, I was having major malabsorption issues. Like, with not getting enough protein, my hair was coming out a lot more than usual. My nails were more brittle, and other signs. I wasn't absorbing calories and probably fats very well either. So, it doesn't surprise me if I'm still having some issues with it. She's also said several things that were false. Really simple and basic stuff. One of the big things was telling me that UC doesn't cause pain. One of the main symptoms both UC and Crohn's share is pain. This is even false compared to what CCFA says, and they were the ones that certified her.
Another one that kind of got under my skin last time was saying it's not debilitating. People can apply for SSI with it, and it can be considered a disability. That alone says she's wrong. A lot of the definitions for IBD in general say that it's a debilitating disease. Even the side effects of the meds can be debilitating. Most of them are immunosuppressants, which lowers your immune system's defenses. This in turn makes you sick a lot more often. Many patients have overwhelming fatigue even while in remission. Making it difficult to do certain things. And no, no amount of exercise 'helps'. It can make it worse if they actually have the energy to do it. I'm not saying they shouldn't exercise at all. Just that they should do what they can. It won't necessarily help with the fatigue part, though. She also used the 'but you don't look sick' logic people outside of the medical community and patients wouldn't say. This is something that many patients hate to hear from outsiders, let alone someone who's supposed to be a specialist. It makes the person saying it sound incredibly ignorant. It's sometimes referred to as an invisible illness or disease for a reason. Most things are internal, and with some skin issues people might have, they figure out ways to hide it. Some can't hide it, like those who lose all their hair. Then again, they could just say that they thought it'd be cool to be bald. Someone could be going to the ER and 'look' fine, but seriously need the medical attention. Some people get handicap placards to park in the handicap parking spots. People see them come out of their car and harass them all the time. Since they don't 'look' like they need it. Same with bathrooms. Some need the bigger handicapped stall, and when they come out, they get harassed as well. There's actually a card that the person could show others, and to get a bathroom in an emergency. (I'm kind of curious about it, and it's apparently free.) This is serious stuff.
She did mention that it can take a toll on someone mentally. That's true, but that's not my issues with it. Honestly, I am having a hard time coming to terms with it, but regardless I know there's at least a maintenance stage if you truly are in remission. And, I have not gotten there. I'm concerned about many things, and she just keeps brushing them off like they're nothing.
My main problems have been the pain, fatigue, lack of sleep, and I think azathioprine's affecting my short-term memory. It's like an endless cycle. The lack of sleep thing started really around June, and has persisted since. The newer pains started around that time. She hasn't done a thing for these. She seemed convinced for a while that I have IBS on top of this. The thing is, I don't have the main symptoms for it. My bowel 'habits' don't change according to stress, they don't alternate (heck, I was constipated from April up until the colonoscopy last month, with no changes during that time), the pain doesn't ease up afterwards (it either gets worse or stays the same), etc. It just doesn't add up. Plus, none of the antispasmodics I tried did a thing for me. For that matter, miralax didn't help much. I still think I have some sort of partial blockage. (Even if I'm having the opposite problem now.) I read that scar tissue can build up and start to block things. So, it's not out there to think like that. I'm getting weary of her not really helping me, the negative attitude towards me, and the incorrect info. I shouldn't have to feel this way.
I really wanted to like her. She seemed great the first few appointments, and the staff keeps raving about her. I asked them if I can see an MD. They said she's the only specialist they have. Yet, they have an IBD center across the street...Sure. I see the gastro (who's an MD) that did the colonoscopy last month, in April. I want to bring up this stuff, and see if I can end up just seeing him. I don't want to see the nurse anymore. One of the only things I liked about her was that she ordered a bunch of tests for me. It just feels like she's not sure what to do with that info. Especially if it comes back with something weird. She ordered a few blood tests, a nasty test to see if I have c-diff, and an abdominal type of ultrasound. A couple of those blood tests have come back. My white blood cells were low, but that was to be expected since I was still sick. Another test was on the 2 metabolites that indicate how well I'm metabolizing azathioprine. Last time one of them was well below the normal range, and this time was close to the same number. (The other was slightly low, but not nearly as much.) She was going to talk to me about last time's during the Monday appointment. It never came up. So, I'm technically not metabolizing azathioprine well. It just goes through me.
This could be a problem. I don't really have a safety net now, and it's not really keeping things in check if it's not being absorbed. We discussed several times about switching meds, she agreed, but wanted to see what the tests would say. So far, the other results were normal. That's good. They might call me to schedule the ultrasound tomorrow. I'm reluctant to do the c-diff one.I will at some point, though. I wonder what that ultrasound will show? That should be interesting. I emailed my primary doctor about all of this on Friday. A few hours later, she emailed back. It was after her office hours. I forgot how responsive she usually is. I haven't seen her in a while. She wants to see me, and at least make me feel more comfortable. It was nice of her.
Had a haircut on the 4th. A DevaCut or Deva haircut to be exact. It was rather odd the way they cut it. She had to cut about 4 inches off because of how damaged it was. That's twice as much as she said she would.
I'd rather have the damaged part cut anyways. As long as it still was long. Noticed, before that haircut, the length of the longest hair was slightly more than 2 feet. That's a lot. I'm still trying to get used to the length. She put a lot of product in my hair. I didn't really like the feel of it once it was dry. I don't think I liked the way the curls were styled, either. Might have liked it at first. I think it looks better now that I'm using my usual products, and styling it the way I did before. Still, it was good to have it cut. It kind of looks fancy up in a bun now, too.
I don't get it caught in things nearly as much as before. I'm hoping to stick closer to the calorie range that's worked for me in the past. That was having 5 meals a day at 240-320 for each one. I know I might be having absorption issues again, but I want to see how it goes with this for now. I haven't really cared lately, although I didn't end up eating a lot. In fact, I was skipping meals for a while there, and then having a huge dinner. That's not good to keep up. They also say people with IBD do better if they eat more often with smaller meals each day. It balances the day out. So, maybe it'll be a good thing for me to get back to.
