This started yesterday and ends on the 26th. I think I read that the people behind it first had it as Aromantic Awareness Week. They realized the acronym for it, AAW, was the same one for Asexual Awareness Week. So, they added the spectrum part. It sounds more inclusive this way. Aro-spec people are the ones that fall kind of in between being aro and romantic. More of a 'grey' area. Just like with aces and ace-specs. Including these people is awesome! (I'm thinking of not using emoticons for the time being, I'm tired of the current ones I've found. So, there won't be any in this post.)
Again, aromantic just means not experiencing romantic attraction. I'm aro ace, so I don't experience that and sexual attraction. There's one more 'a' someone could be, and that's agender. Not experiencing something is in interesting thing to try and figure out.
Aro aces basically get hit on 2 fronts by society: heteronormativity and amatonormativity. Heteronormativity is the idea as a society that everyone should be heteroromantic, heterosexual, and cis, or 'straight'. Most people don't know about romantic orientations, or even that they can be different from your sexual orientation. The ones who aren't straight/cis are looked at as weird, or inhuman, or that they have 'tendencies', or there's something wrong with them. Also, it's about how straight-centered things in society are. Like, most of the media is based on straight/cis people. Occasionally, you might have a gay character, but they're stereotyped. Same with trans characters. (I don't think I've ever seen a non-binary person being represented.) If, on rare occasions, there's an ace character, they're treated as though they need to be fixed. Some of the media gets it right, but it's super rare. Also, even for medical stuff it's 'straight'-centered. A gay man can't donate blood unless he hasn't had sex for months. (Can't remember the exact number of months...) Trans women are treated similarly, even though they might be straight. In fact, it might be because of that for some. It's really ridiculous. We're also told by society that you need sex. It's apparently listed as one of the things humans need along with food, water, and sleep. This makes aces feel like they're broken, or alienated, or inhuman. (Personally, I've felt alienated with being both aro and ace.)
Amatonormativity (hopefully I'm spelling this right) is when society says that humans need romance. That romantic love is the highest form of love, and everyone needs to achieve it. Other types of love are considered lesser than. This hurts aros. For me, platonic love or attraction is one of the strongest ones that I feel. Friends and especially close friends are very important to me, and I can love them to death platonically. It kind of hurts when some of my friends grow distant from me because they're in a romantic relationship. They spend a lot more time with them. It's kind of understandable, but makes platonic love lesser. Even when I was in a romantic relationship, some of my friends didn't want to hang out as much and became distant. My boyfriend seemed to try and suck up most of my time, and seemed to not want me to see my friends as much. It was a weird feeling. Added to the drowning or smothering feeling I got towards the beginning of that relationship. That never totally went away while I was with him.
I've read posts even on AVEN where the aros are more represented than the general population, that say things like: "Aros don't feel or understand love. How could they not? They must be cold and heartless." I really hate this! Aros are perfectly capable of many other forms of love. There's platonic love, parental love, familial love, love for pets, love of country, love of food, neighborly love, love of cultures, love of your heritage, love of music, and many more.
And, there are other types of relationships out there. I personally would love to be in a qpr or queer(some prefer quasi)platonic relationship. Some people use qpp instead, the last p meaning partnership. It's essentially a relationship that isn't sexual and romantic. So, it's more emotional and platonic. I still would like to be with someone, just, again, not romantically and sexually. It's a lot more than 'just' friends. Many people have a hard time actually explaining it to others. Anyone can be in this sort of relationship, but it's mostly aces and aros that know about it. For me, gender doesn't matter with this. I can be attracted platonically/emotionally to any gender. So, I'm kind of pan this way.
The problem is trying to find a partner for it. Aros can date, but they might not really understand it. I honestly don't quite understand it, myself. I've tried. I thought in the past it was like trying to make friends, but kind of like those friends wanted things that I didn't care about. Leaving me wondering: why would they want those things? However, this relationship is a different sort of thing. Some people actually use a sheet that asks the possible partner what would be ok and not ok to do. Basically, a checklist of boundaries. Some couples are ok or enjoy having sex and doing certain romance coded things. The partner is sometimes referred to as a zucchini. I like the less popular one more, being pumpkin. It's a little cutesy, though. I still don't know why they would call their partners vegetables. Although, it's interesting.
Some people in a qpr marry their partner. I think that would be interesting. Some get married to please their family, some for tax purposes and other governmental benefits, some to symbolize their relationship, some to show that other relationships are just as important and should be celebrated, etc. With weddings, in the past I've only thought about things like the dress and food. Not the actual partner...(Which might be another sign I'm aro.) I think if I were to marry my partner in that relationship, we could modify it. Make it so it's not so romanticized. Like, instead of kissing at the end, do a nice hug. Have the wedding as a chance to party, see family and friends, celebrate the relationship, an excuse to dress up, have good food, and more. It might be strange to others that attend it, though. I don't think we'd care what those people thought about it. Some couples even have kids, either through adoption, or the 'old fashioned' way, or IVF, etc.
A week from this Saturday, the local ace group will meet for the first time. I'm really excited about this! Maybe I'll meet another aro ace. Although, meeting aces in general would be awesome! Who knows, maybe I'll meet someone who wants to be in a qpr, too. I think that's one way to find one. A new member just recently joined the facebook group. So, we're back up to 10 people. Maybe we'll have more that show up at the cafe. That would be both a good thing, and a bad thing. The bad part would be that I hope they have enough room for us. The good part would be the number of people...Even if half are allies, that'd be great.
Someone on fb recently made a bunch of pics with Star of Davids that have different romantic orientations' flags in it, and the ace flag in the background. They said people can freely use it. I thought it was really cool, so I made it my profile pic on fb and instagram. It represents that I'm a Jewish aro ace. Yay! 3 of my identities are represented! The flag they chose is the newest one. The dark green, light green, white, grey, and black one. I think I mentioned the meanings in the past. Although, many people still can't agree on those. There are 3 different flags that I know of. I personally like the 1st one the most (green, orange, yellow, black), but apparently that one's not that popular anymore. Still saw it being sold online somewhere when I looked up info on it in the past. So, some people still like it.
I might try joining Arocalypes soon. It's basically like AVEN, but for aros. I think it might have even been made by someone who was apart of AVEN. It has the same layout, and they share similar news. The color scheme is a little hard to get used to. It has the current flag colors as borders, and the main color is like a bright light green. Kind of in your face. I don't think it's as active as AVEN, either. It only has about 400 members vs the hundreds of thousands AVEN has. Still, it would be interesting to be apart of that community. I'd get to know or read about people who are like me that way.
I also recently joined a closed fb group called Rainbows, Aces, and Unicorns (LGBTQIAPDFKS+). It lists the longest acronym for the community I've seen. The longest I usually see is up to the P, and they add a + to that. Maybe the D is for Demisexual and F for Fraysexual? Not sure about the others. Interesting anyways. They seem extremely inclusive. There are apparently a lot of aces and aros. (By the way, one of the ace symbols is the ace suit in cards. Hence, just saying aces as a symbolism in the title. An arrow is one of the main symbols for aros.) Many who are both. Many members represent the other letters, too. I really like this group so far. They seem really kind. I'm not used to a general LGBTQ+ group. I know of many ones that each deal with only one part of the community. So, this is good to see, and a semi-new experience for me.
Monday, February 20, 2017
Sunday, February 12, 2017
National Pizza Day!
Mood:
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.
This is my wallpaper for February. It features the main characters of Kyoukai no Kanata or Beyond the Boundary. It's an interesting, yet very trippy show. Only gets trippier and more complex as it goes. It's good, though. I was surprised I found a few wallpapers of it. Thought this one was cute, and nice to see them acting 'normally'. Looks like before things got more dramatic.
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.
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.
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