Mood:
I love strawberry shortcake!This holiday was on Tuesday. Seems kind of early to have a day devoted to it. It seems like a mid-summer fair-type treat. The day before was National Cucumber Day. Cucumbers are awesome! Even just eating them plain is good. Yesterday was National Fudge Day. Today's National Apple Strudel Day. So much good food!
This is my wallpaper for June. It's another Pandora Hearts one. The series is already heavily influenced by Alice and Wonderland, so it's interesting to see one where they try to parody it. There are a lot of differences between the two stories, but they have a lot of the same elements. Even nicknames for characters and their chains might be the same as names from Alice and Wonderland. Heck, the main character of Pandora Hearts is named Alice. Oz is the other main character, and towards the end of the manga we found out who or what he is. Really, both the pocket watch and the rabbit make so much sense for him. The concept of time keeps popping up throughout it, too. The Abyss is like the rabbit hole. Although, the 'world' down there seems even more messed up and demented than the one in Wonderland.Break's 'chain' is called the Mad Hatter, and he's sometimes referred to as that himself. He certainly fits that character. A cat that was originally Alice's mother's (her name was Lacie) turned into the Cheshire Cat in the Abyss. I'm not so sure about Sharon being the Queen of Hearts in this wallpaper.Her chain is Equus, which is a horse that can teleport people back to safety. If I'm remembering correctly, there was someone who had a chain called the Queen of Hearts, and they kept muttering things like: "Off with their heads!" They seemed like a side character. Important, but was only mentioned briefly. They were the ones who were decapitating people. They should have picked that character instead...I'm not so sure about Gil being the March Hare, either. His chain is the Raven. Apparently, there was a minor character named The Monstrous Crow in Alice and Wonderland.
My beagle calendar features another cute beagle.This one barely seems older than a puppy. His whole body is shown in this one. His tail is sticking straight up. The info blurb this time is about 'the Beagle Brigade' that patrol baggage-claim areas at over 20 international airports. They successfully seize tens of thousands of items every year. Also, that a beagle's coat is water resistant.
My Jewish calendar features 2 pics of what looks to be parts of the same chuppah. Chuppah is like a canopy that a Jewish couple stands under during their wedding ceremony. They have the same info with both the pics, too. Made by Saskia Weishut-Snapper; out of velvet, tulle, paint, metal threads; Epse, Netherlands; 1991. Interesting designs that seem a bit difficult to really pick out the scenes. The other pic features a mizrach, made by Abraham Yakin; paper; Jerusalem, Israel; 1987-88. A mizrach can be an indicator of where east is. People in the diaspora, or those not living in Israel, face east while praying. So, there might be a special painting or other piece of art that indicates where to pray. I don't see these little 'indicators' too often. Odd that one would be made in Jerusalem itself. While there, people pray towards the Kotel. Wherever that is in relation to where they are. Maybe it's used in that sense, too. This one is colorful with a menorah, Star of David within a circle, branches stretching out, two deer that seem to be kissing, a meadow, and flowers. Looks really busy, but nice.
The month-long holidays are: National Candy Month, National Dairy Month, National Iced Tea Month, National Seafood Month, LGBT Pride Month, National Camping Month, National Oceans Month, National Rose Month. Some are for important causes, some are to make you appreciate things you may take for granted, and some are just for fun.
Well, it's been a lot longer than I expected it to be since the last time I posted.It seems my symptoms were (still are) worsening, and with recent events like what happened in Orlando, it all threw me off for a bit. Also, there were some days where it was unusually warm for us, so I turned my computer off during those times. Hopefully, despite what might happen, I'll post more often on here.
I emailed my gastroenterologist last week about the symptoms. Interestingly, I didn't have a lot of the same ones when I was diagnosed. I guess that sort of thing can evolve. Some, not all (others were kind of a bit tmi...), of the symptoms I mentioned in the email were: being fatigued almost all the time, frequent waves of nausea, joint pain (particularly in my right knee), strong abdominal pain (stronger at times than what I've been 'used to'), lightheaded, ears are ringing a lot more often (I think that's usually like an internal alarm for me that something's not right when it happens), heavy and acidic stomach pain (I didn't have that much stomach pain when I was diagnosed, the pain was mostly in my lower abdomen), a lot of pain just before eating and just after, and more gurgly than usual. Recently, about 3 days ago, I've had stabbing pains on the middle right side of my abdomen that radiates across my back and towards my spine. Also, some weird chest pain that just started about 2 days ago.
Anyways, I mentioned how this didn't sound like I was in remission. I've read that when you are, you have very few symptoms, if any. One of the goals to go into remission is to take care of the symptoms first. My last blood test results and the sigmoidoscopy indicated that I was in remission. The sigmoidoscopy was done at the beginning of April, and the most recent blood tests were done at the beginning of last month. I mentioned at the end of the email that I wouldn't mind having a phone appointment with her to talk about these symptoms. She emailed me back a couple of days later, and she agreed that we should discuss it further through a phone appointment. I thought she would ignore me or not take it seriously, since the last batch of tests indicated I was in 'remission'. Also, because of the way I felt at the end of my last physical appointment with her. She didn't really take one of the symptoms I was feeling at the time seriously.
Had the phone appointment Monday morning. She was surprised by all the symptoms, and agreed that they weren't normal or what people usually have while in remission. To her, some of the symptoms sounded like they might be caused by the azathioprine. So, she wanted me to go from 2 pills a day to 1 1/2 pills a day. This scares me a bit, considering it's the only med that I'm taking that's specifically for it.I do remember that when I was taking 3 a day, it caused some nasty side effects. I'm wondering if maybe my body doesn't like to be on it for too long. It takes a while for the azathioprine to build up in your system and to actual start to kick in. Maybe I need to switch to another med. But, that might mean trying a biologic like humira or remicade. Pretty much the heavier meds are the only ones I know about that are left.
She also wants me to do another test to see if my small intestines are affected, and it will also show if my colon is starting to get inflamed again. Not to gross people out, but it's a stool sample test. It's nasty, and I was only able to do it once.The lab tech 'prepared' the samples for me. (Many of them prefer people do it with a kit at home, but you supposedly can do it there, too.) Hopefully, they can do that this time. It's still gross. But, if it gives a better view of what's happening, I'll try.
They haven't looked at my small intestines yet through any sort of testing. It's all been about everything else on my digestive tract. I've been curious about that area since I had my endoscopy/colonoscopy last summer. It's somewhat of a tough area to test. It would be nice to have them look at it through imaging. To get even a better idea of how it's doing. I might ask about that after doing/getting the results back from that test she wants me to do. One thing at a time is probably good with that.I've read that some of my symptoms correspond a bit to what people might experience if their small intestines are affected. So, that should be interesting. I know my gastro can't exactly pinpoint which IBD I have (either Crohn's or Ulcerative Colitis), but what if I have both? This might be why she can't be entirely certain. I've read that some people do have both, although it's more rare.
She said I could try 2 over the counter meds for a couple of my symptoms. One I had already, but she recommended I have more than what they say is the highest dose you can have in a 24-hour period. I think the other one my mom used in pill form. But, my gastro said the powder form would be a lot more effective for me. At least, she didn't insist on taking miralax still. I tried it twice before. Didn't work, and couldn't stand the smell or taste. This new powder reminds me a lot of Tang.Haven't actually had Tang in a very long time, but this stuff smells and tastes like it. Which is like 1000x better than the other stuff I was trying. It actually tastes good.Hopefully, it won't be addicting. The only downside to it, that I noticed, is you have to have a lot of water with it. You have to drink it fast, too.
She wants me to email her back in 2 to 3 weeks about how I'm doing. She might email me sooner if something is really out of whack in the results of that test. She was a lot more helpful than I expected. If she hadn't been, I have a referral to see another gastro, just in case. Even have it on paper. I'll keep it, and see what happens. I watched a webcast on CCFA's site about treatments, plans, what remission really looks like, etc. A lot of what I learned from it weren't even touched on when I saw her in person or even on the phone. They also mentioned that at any time, if you don't feel satisfied by how your gastroenterologist is treating your case, you should get a second opinion or entirely switch to someone else. They said there are great risks to you as a patient if you essentially don't advocate for yourself. This also means that you have to be clear, update them on new symptoms as soon as they come up, stay in contact, etc. So, it somewhat works both ways.There were several months where I basically tried to ignore it, but the symptoms were more difficult to deal with because of this. I'm trying to be better about it.
Since I've been feeling so crummy lately, what with events happening like Orlando and my symptoms, I decided to put makeup on for the first time in a very long time. It usually makes me feel better, if I look better than I feel. I didn't just put lipstick on either. I put foundation, blush, mascara, a little eye brow pencil, and eye shadow. I used about 4 different shades/colors of eye shadow (white, sparkly gold, light blue, and a light beige), but they seemed to blend well. It was fun picking out which ones to try. Certain eye shadows don't show up very well on my eyelids. They kind of disappear.The lipstick was called Fuchsia with Blue Pearl. It's kind of got a metallic sheen to it. Seems to glow in dim light. Apparently, people loved that color on facebook. It's one of my favorites, but it feels like it might not go with too many things. I was wearing a light blue sweater.
There was only one comment that was somewhat upsetting to me. This person made a similar comment the last time I posted a selfie. That was, I think, in March. I don't do selfies that often. Anyways, they said they see my mom through me in that photo. That seems especially creepy since my mom passed away 4 years ago. In that sense, they might be trying to comfort me, but sort of ending up doing the opposite in the end. I'm also me. I'm not my mom. I'm a different person. I have different tastes, interests, personality, etc. There are also very very few similarities with the way she looked and the way I do now in pics. So, this is weird to me. The person who said it is a really nice person, so I know they mean well. It just doesn't really come across that way to me. I certainly don't mean to be rude or hurt other people's feelings. Just the way I view it.
I also did my nails. Haven't done that in a while.The nail polish I used is called Scarlett O'Hara. A really nice bold sparkly red. One of my newer ones. I normally like stand out sort of colors. So, if I do red, it has to be bold and different. I have some metallic blue ones, metallic purple, light creamy blue (they call it blueberry), frosty colors, orange, very dark purple with glitter to put on top of it, and more.
For the past few weeks I've joined the bandwagon in posting 'TBT' or Throw Back Thursday posts. For one of yesterday's pics I posted one of me when I was 4 months old laying in a big tub(?) chair. Drifter, one of the cats at the time, was on the back of the chair watching on like a statue. The other one is of me when I was about 16 (the note on it said it was a month before or the month of my birthday that year, close enough) in my high school marching band uniform holding my clarinet. I was in marching band from junior high up until a couple of years into college. Only stopped because of an accident during practice where I nearly broke my tailbone. They couldn't actually tell, because there was too much blood internally obstructing what the x-ray could show. Hurt like hell for months after. It had to heal, and after that I couldn't high step. Sad, but I have a lot of good memories of it.
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