Liar Sprite: Chronically Misunderstood

For some reason anesthesia makes me a bit agitated and generally put out with anyone and everything. This specific incident took place after my second colonoscopy/endoscopy and for some reason I decided that filters weren’t needed and I definitely wasn’t gonna use mine.

When I first came to consciousness there was part of a popsicle in my mouth and I was very confused. Apparently I had said I wanted it, but I don’t remember any of that. My dad was holding the stick and the first thing I said was “What are you doing? Why would you do that?” in an accusatory tone. It’s a good thing I have nice parents who just smiled and then jokingly made fun of me later. They’ve put up with a lot from post-procedure Alyssa, and she isn’t always very nice.

Later the nurse asked me if I wanted any Sprite to take some medication with and in a fog I said yes. She came back with Shasta Twist which was completely unacceptable to drugged up me. I turned to my parents and said, “oh so all they have is lair Sprite? I don’t want this liar Sprite.” Apparently anesthesia also makes me high maintenance. I was deeply offended that someone would try to pass off brand soda onto me like it was the real deal.

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The clean out for a colonoscopy is enough to make anyone on edge, but add medication and an already sarcastic attitude and well the outcome isn’t always very pretty. I think it’s really funny that I said those things because I never act like that, and I can’t believe that off-brand soda offended me. Who knew I was such a brat when it came to Sprite?

Lots of Love,

and Sprite 😉

Alyssa

 

 

 

Why do we have to fight this stuff?

The laws Obama put in place to protect transgender kids were abolished yesterday.

It makes me so sad that we have to fight for trans people to use the restroom the corresponds with their gender. These laws were made to protect trans students, and the White House sent a very clear message that they are okay with putting these students lives in danger, because they don’t support trans rights. This is beyond ridiculous.

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These are the same people who make fun of safe spaces, and this is exactly why we need safe spaces! Kids shouldn’t be forced to use the wrong bathroom at school or to go by the wrong pronouns. They shouldn’t be afraid to change in the locker room or scared they might get attacked by a classmate. Abolishing these laws tells bullies what they’re doing is acceptable. 41% of transgender people will attempt to commit suicide in their lifetime; bullying and intolerance play a huge role in that statistic. Those statistics are even higher for ethnic minorities, those in poverty, and people who don’t finish high school.

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These kids need protection and love when going through the already difficult experience of middle school and high school. Why are we letting our government out an even bigger target on their back? When I was still going to high school there was a guy I knew who was trans and had gone to elementary school with me. I only knew he was trans because the news spread like wildfire. Everything from supportive comments to transphobic slurs filled the halls. For reference I went to a HUGE school, so it seemed weird that anyone cared, but this is Texas after all. Luckily my school let him use the boys locker room and bathroom, but people weren’t always very nice and he had to deal with the gossip and being misgendered daily.

I don’t have any great advice or solution to the issue, besides telling transphobic people to get their heads out of their asses, but I don’t think that’ll help. Continuing to support organizations that fight for LGBTQ+ rights like the Trevor Project, GLSEN, Trans Lifeline, and The Human Right’s Campaign is important. If you have someone who is transgender in your life let them know how much you love and support them. If you are trans know this cis gay girl may not be able to understand your struggles, but she loves you and supports you 100%!

Lots of Love,

Alyssa

 

17 Going on 67

I haven’t been feeling great for the past two weeks or so.

I don’t think I’m in full flare mode yet, but my body just feels bad. I’m not having migraines, but I am having daily headaches and gastro issues. My tachycardia has been affecting me more than usual and making me really tired. I just feel old.

My joints hurt, and everything is exhausting. Weird things keep happening that aren’t a big deal, I just don’t normally experience them. My muscles have been twitching, my joint crack ridiculously loud every time I move, and a few times in the past week I’ve started shaking randomly. These things probably won’t last long, because my body is an asshole who likes to mess with me, but they’re annoying none the less. It’s been hard to explain, but something feels off. I’m not in a ton of pain, but I feel terrible and that’s not really something you can fix.

I went to my first appointment at a new counselor since the last one kept canceling on us. It was an “intake” appointment and she just asked me a bunch of questions. I feel like all I’m doing is complaining, but to be honest I didn’t really like her. She asked me a few questions in the beginning and my brain went blank. I couldn’t think, my heart starting racing even faster than normal, my whole body flushed, and I felt lightheaded. I was embarrassed and said, “I’m sorry my brains a little foggy today,” and she just gave me a look like I was crazy and said “oooooh kayyyy.” It felt really judgmental even if she didn’t mean it that way. She also said somethings that rubbed me the wrong way and tried to give me medical advice, which is so very annoying. I’m still going to try to have one real appointment with her and give her a chance, because there isn’t anyone in my area who wants to see a seventeen year old with chronic health issues.

I’m really hoping they’ll find something in my electrophysiology study next week, because this fatigue is awful. I’m normally pretty fatigued, but this a whole other ball game. I am grateful that I’ve only had a few episodes of extreme pain, but I’m fearful for the weeks to come. This time of year is normally really bad for me, so it’s been kind of weird that I’ve had less pain than normal. I’m trying my best to stay positive, although this post wasn’t very positive was it? Sometimes we all just need to rant.  I have a hard time finding a balance between my realist personality, inner cynic, and the positive person I know I should be trying to be.

How are you doing? Let me know what’s knew in your life or what’s been going on!

Lots of Love,

Alyssa

I Don’t Know

“I don’t know” can be devastating words to hear or they can be refreshing when you have chronic illnesses.

When you don’t have a diagnosis or a good treatment plan, hearing “I don’t know” over and over again is exhausting and disheartening. If specialist after specialist doesn’t know, then who does? You start to wonder if you’ll ever find answers, or if your health problems will forever stay a mystery.

On the flip side, being lead on my cocky doctors who tell you they can fix you, but actually don’t know whats going on can be just as exhausting. In my own journey, time after time empty promises kept being made, but I wasn’t getting better; in fact I often got worse from side effects of the medications. I do think some of the doctors I’ve seen truly believed they could help me, they just didn’t know what they were getting themselves into.

I’ve only had one doctor honestly tell me they didn’t know. He was a gastroenterologist who is incredibly intelligent and had diagnosed me with abdominal migraines 2 years prior to this visit (this visit was last fall, September maybe?). He was very honest and said he was going to have to research and read a lot because he didn’t know what to do and he didn’t think it was abdominal migraines. He specializes in abdominal migraines, so he knows what he’s talking about as far as that goes. Although it’s hard to hear that someone as smart as him was stumped by my situation, I appreciated his honesty and found it refreshing. I have so much respect for him, and even more now that he was able to admit that he wasn’t sure what is going on with me.

I still don’t have a diagnosis and March marks officially five years of searching for one. It’s frustrating, but we haven’t given up quite yet. I have my electrophysiology study scheduled for the 2nd, and I’m supposed to be starting botox this month. I’m also starting conseling this week (after a mess of appointment cancelations on their part, but thats a whole other post.) We’re looking into seeing another endocrinologist, so hopefully all of this will lead us somewhere positive.

What do you do when doctors and specialists don’t know what to do? I don’t have any great answers for that to be honest; since this is all about honesty. The one thing I do know is, don’t give up. Go to more doctors, try more medications, look into more diseases/syndromes that you could possibly have. Test and re-test for things. Ask questions and demand answers. Self-advocay is a must when you’re chronically ill and it isn’t always going to be an easy thing. You’re probably going to disagree with a doctor at some point, and that’s okay. Choose what’s best for you and your body.

I personally would rather hear “I don’t know,”and try to look for more options than have someone lead me along when they really can’t help me. What are your thoughts? Would you rather be told the truth or have them try treating you when they aren’t sure what they’re doing?

Lots of Love,

Alyssa

Texas Anti-LGBTQ+ Laws

Texas is trying to put a series of anti-LGBTQ+ laws in place that are detrimental to the queer community.

The first one is a “bathroom bill” similar to one passed in  North Carolina. We fought North Carolina, and unfortunately have yet to win that battle. These so called “bathroom bills” are absolutely ridiculous and aren’t protecting anyone. They’re transphobic and only cause more problems. How do you tell someone who presents femininely and identifies as a woman to use the men’s restroom because she was assigned male at birth? That only puts her in danger, and criminalizes her gender. It doesn’t matter if the trans person “passes” or not, they have the right to use the bathroom that corresponds with their gender.

Other legislation is being reviewed that lets teachers out students to their parents. This is so harmful! Suicide rates of LGBTQ+ are much higher than those of non-lgbt youth, and students who have unsupportive families only have an even high chance of self-harm and suicide. Many students don’t come out at home because they know it isn’t safe, but they are out as school and see it as a safe haven. Parents don’t get to know every piece of information about their children just because they are the parents. Some people are terrible parents and we should be protecting our  LGBTQ youth.

If you thought those were bad, just wait there’s more! They’re looking into making it legal to refuse service to someone based off their sexual orientation or gender identity and making it legal to refuse marriage licenses based off “religious beliefs.” That is complete and utter bullshit. You can’t break federal law because of religious beliefs. They already did this with Kim Davis and she ended up getting arrested, but with our mess of a government who knows what will happen.  I don’t believe being homophobic is a religious belief, but thats another topic for another time.

I’m hoping and praying that these things don’t pass, but I wouldn’t be surprised if at least a few of them did. Lots of celebrities are standing up against these laws, and I suspect if they pass they will pull their concerts and shows like they did in NC. South by South West is coming up and if people pull out, Texas could potentially lose millions of dollars.  Not only are these laws discriminatory and unconstitutional, but they are also bad for our economy.

Here’s a simple way you can help whether you’re a texan or not!

Go Here and Read the article

Scroll down to the bottom of my page and click on this to send an email to the Texas legislators to oppose these horrible, homophobic and transphobic laws!

Lots of Love,

Alyssa

 

Poop Shoot: Chronically Misunderstood

Way back in the very  beginning of my medical journey I had my first ever CT scan. The pediatrician I saw thought I was having an appendicitis so I had a scan scheduled for that afternoon at the hospital in my town. Up until this point the only person in my family who had been there was my brother for a collar bone fracture, and the care wasn’t very good, so our hopes weren’t high, but we didn’t have any other choices that we knew of.

When I arrived for my appointment they have me two one-liter bottles of contrast to drink. It was thick like a smoothie while also being chalky. One was berry which I was fine with and the other was banana. I absolutely hate banana. It isn’t just a food I don’t care for, it’s my least favorite food and the smell alone makes me want to vomit. They didn’t have any more berry though, so I was going to have to suck it up. I had two hours to drink it all and I already wasn’t feeling well.

Needless to say the next two hours were awful.  I couldn’t finish the last half of the second bottle and when we went back so they could perform the CT and told the tech I couldn’t finish she said, “Oh that’s fine, one was probably enough.” Are you kidding? I dry heaved the whole time while forcing myself to drink this nasty paste and I didn’t even have to drink the second one? Ugh

Then comes the IV. This was the first time I had ever gotten one and I was terrified. They made my mom stay in the waiting room which didn’t make much sense because they hadn’t started using radiation yet. The same annoying tech stuck me three times and surprise, surprise didn’t get it.  She called in an ER nurse who got it… three times later. The whole time they searched for a vein she kept saying to me “all we’re gonna do is a take some pictures to look at your poop shoot.” I swear she said “poop shoot” like twelve times. Maybe she thought I was constipated, but there’s no way she could have known that from looking at me.  I may have been 12, but I was more than old enough to know and understand anatomical names for body parts.

Both during and after the scan she also mentioned my “poop shoot” again. Something about that phrase just weirds me out. People say some odd things to kids into to try to relate to them. If your curious I wasn’t constipated, at the time I had Mesenteric Adenitis which was super confusing and I’m still not sure how it all fits into this puzzle. I can’t help but laugh every time I think about a grown woman squawking “poop shoot” over an dover again. Who thinks of these things? 🙂

Lots of Love,

Alyssa

Oh Valentines…

So tomorrow’s valentines day.

I personally don’t have any strong negative or positive feelings toward the 14th of February. I find it both funny and odd that people make such a big deal over one day. Lot’s of people in relationships make a huge fuss over it, and try to make valentines the “perfect day” chasing unneeded anxiety and stress. On the other hand about a week before  the 14th, all my social media gets filled with single people complaining about how sad being single is and how they hope they get in a relationship before Valentine’s Day rolls around.

Can’t we all just go back to giving each other cards and decorating heart shaped cookies?

Coming from the point of view of a seventeen year old who’s never been in a relationship- I have no problem with being single. In fact I find it humorous that anyone my age would worry about being single. It’s not that I wouldn’t be interested in being in a relationship if I found someone I liked, I just don’t think it’s the most important thing in your teenage years – and definitely not in this chronically ill hell that is my “teenage years.”

My older sister is 22 and has only dated one person. It was a very short relationship and was long distance so they didn’t get to do much together after they started dating. She talks about “being forever alone” a lot and I always tell her “YOU”RE 22!” I find it funny that I’m the younger sister yet I’m often the voice of reason in our relationship. She goes to a university that puts a big emphasis on getting engaged before graduation. I don’t think there’s anything wrong necessarily with getting engaged at 22, but that’s so young and I don’t think it’s the best idea for most people. Over Christmas break six of her friends got engaged. Six. And I got to hear about it every single time, lucky me.

Everyone is on their own journey and there is no right or wrong time line to do things. Valentines day can still be fun if you’re single, because celebrating all kinds of love is important. While my inner pessimist doesn’t hate this day so much as to say “it’s a Hallmark holiday,” I do think unrealistic expectations are set by the media. Having a candle-lit dinner at home can be just as lovely as going out to nice restaurant. Your Valentine’s Day doesn’t have to be life-changing and picture-perfect; a good memory or two should suffice. An expensive gift doesn’t needed to be bought, you’re time can be the gift to one another. There’s nothing wrong with nice dinners and expensive gifts, butt hey aren’t necessary to make great memories or have a good time.

Wishing you a Happy Valentine’s Day,

Alyssa