Liebster Award 2018

I want to say thank you so much to Alyssa from FightMSDaily,  and Jess from Daring to Jess for nominating me! Alyssa has an amazing blog where she talks about living with Multiple Sclerosis. I also love her name, but I may be a little bit biased. Jess has an incredible blog where she talks about lots of different topics, including many insightful posts about being a student.

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My answers to Alyssa’s Questions:

  1. Why did you start blogging?

I started blogging in December of 2016, after I had dropped out of high school the month before. I was in a horrible flare, and was super sick, which left me feel very lonely especially since I had to leave school. I decided to start writing about my experience with chronic illness, as well as social justice issues that I found important. Starting this blog is one of the best decisions I’ve made. It’s helped me learn so much about the chronic illness experience, and I definitely feel way less lonely than I did back in 2016.

2. If you could go anywhere in the world, where would you go?

The number one thing on my bucket list is to go to Thailand. It’s such a beautiful country and their culture is very different from American culture. They also have great food, and really cool markets!

3. What inspires you in life?

So many things! Resiliency is probably number one. The resiliency of so many people groups: ethnic minorities, disabled and chronically ill people, the LGBTQIA+ community, women, etc. is so inspiring. People in my church also really inspire me to live a life of service to others, and to constantly give.

4. What is your favorite color?

My favorite color is navy, but I’m also really into burgundy at the moment.

5. If you had a magic wand what are three things you would do?

First I would fix the U.S. government, for obvious reasons, second I would remove bigotry from the world (but hey doesn’t that tie into number one?), and third I would make healthcare free so people wouldn’t have to be in debt just to survive.

6. What did you want to be as a child?

When I was really little, I wanted to be a teacher, only because I wanted to decorate the bulletin boards. From around age 8 and up I wanted to be a doctor, and I still do!

7. What is your favorite animal?

Don’t get me wrong I love dogs, but I’m definitely a cat person!

8. What is your favorite part of blogging?

I love reading and responding to comments! Interacting with other bloggers is something I really enjoy.

9. If you could go back in time, what advice would you give your 10 year old self?

I would tell my ten year old self to be grateful for what she has, pretty soon things are going to be very different for her. I would also tell her that she’s stronger than she knows, and she can handle everything that’s about to happen.

10. Do you believe in karma and why?

I do not believe in karma. I believe there are consequences, good and bad, for every single one of your actions. I also believe good and bad things happen to everyone, regardless of what kind of person they are, because that’s just how life is.

Jess’s Questions:

  1. What is the most important song to you?

Rejoice by Julien Baker is by far the most important song to me. I had never cried while listening to a song, until I heard rejoice. I was feeling super depressed when I first heard it, and the lyrics really spoke to me.

2. What does a typical weekend in your life look like?

Most weekends I’m playing catch-up on homework, and trying to get ahead for next weeks work. I also go to church on Sundays, and then eat lunch out with my family which is always fun.

3. Would you rather be twice as smart or twice as happy?

I would rather be twice as happy. I feel content with my level of intelligence, but I could use a little more happy in my life!

4. What are you excited about this year?

So many things! Mainly moving out and transferring colleges in the fall. I’m working on my college applications currently, which is both exciting and terrifying.

5. Who knows you best?

I can be a pretty guarded person, but my mom probably knows me best. She can tell when I don’t feel well (even when I’m faking “well”) and she always knows when something is wrong!

6. Unlimited love or unlimited money?

Unlimited love for sure. I think one of the most important things a person can do is to love and be loved.

7. What is the hardest barrier for you to overcome to write your blog?

Mainly just finding time and energy. After a long day at school, I come home to do home-work and then I’m basically useless due to sheer exhaustion.

8. What’s the first thing you would do if you won the lottery?

My parents dream is to live in this really trendy neighborhood in the major city we live near, so I would buy them a house there. We’re actually currently looking for a house, and we are in the process of putting our house on the market, but we definitely can’t afford that area.

9. What’s your favorite thing you bought in the past month?

I bought a pair of black oxfords that I’m in love with!

10. What is the nicest thing someone has said about you?

Recently when I was feeling really upset about applying to college as a disabled person, and not having as many things to put on my resume as I would have hoped (due to all my time and energy being taken up by being chronically ill) my mom told me , “You are not a liability. You are exceptionally strong and constantly persevere. You should be everyone’s first choice, and if you aren’t then they don’t deserve you.” It was so nice, and exactly what I needed to hear at the time!

11. Where’s your favorite place to be?

My favorite place to be is in the car at night, driving around a city while blasting music. The feeling cannot be duplicated doing anything else.

 

My nominees:

 

Rules for if you chose to accept the nomination:

• Write about it on your blog and thank the person who nominated you. Write about their blog too.
• Display the award on your blog.
• Nominate 5 or 10 blogs which you feel deserve it.
• Let the nominees know that you nominated them.
“Don’t forget to create 10 questions for them to answer. Notify your nominees and provide a link to your post so that they’ll know what to do.

Questions for my nominees!

  1. What is your favorite thing about the city/state/country you live in?
  2. How do you come up with ideas for new blog posts?
  3. What song means the most to you?
  4. What was your favorite game to play as a child?
  5. What is the nicest thing anyone has ever said about you?
  6. What is a social justice cause you are passionate about?
  7. Who is your favorite person to be around? and why?
  8. Have you ever travelled abroad?
  9. What are you excited about this year?
  10. Would you ever want to be famous?

 

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January Doctors Appointments

After having December off, three doctors appointments felt like a lot this month!

On the 8th I had my gastroenterology appointment. I really love my new GI. He comes into the appointment with a game plan, carefully explains every aspect of it, and the reasoning behind it. He started me on a dietary supplement to try and get my digestive issues under control. We basically decided to see what the allergist says about possible mast cell issues, and then reconvene. If they didn’t feel like it was an allergy/immunology issue then we’re going to do a colonoscopy and a smart pill study. If that doesn’t give us any information, he is going to refer me to a gynecologist for a possible laparoscopy to see if I have endometriosis. Not too excited for surgery, but we’ll cross that bridge if/when we get to it.

January 16th was my allergy/immunology appointment with the new doctor that my GI referred me to. I wasn’t expecting too much to come out of it since my past experiences with allergists left something more to be desired. This appointment was interesting to say the least. We waited almost an hour and a half after our appointment time before we saw the doctor. He spoke incredibly softly and spent most of the time staring at the computer saying nothing. With this information it may sound like it was a bad appointment, but it actually was really productive. He believes it is a major possibility that I have a mast cell disorder. He’s starting me on cromolyn sodium and xyzal to hopefully stabilize my mast cells, if I do in fact have a mast cell disorder. My body’s reaction to this medication will also give us a good indicator if I have a mast cell disorder or not.

When he looked at my biopsies from my endoscopy I had back in November, and he said that my mast cells were elevated to a concerning point. Previously my gastroenterologist had said they were elevated, but it wasn’t alarming. My GI was just going off of the little bit of info he knows, which is why he referred me to an immunologist in the first place. The immunologist also reiterated how incredibly difficult it is to diagnose mast cell disorders. Lucky me I guess. After being diagnosed with IST,  I really feel like I do have a mast cell disorder since I present with most of the symptoms and many people with different forms of dysautonomia have mast cell disorders. It’s just going to be even more of a grueling process than it’s already been to get a diagnosis. So far I’m doing really well on the cromolyn sodium. Within the first few days of taking it I started having normal bowel movements, which is something that hasn’t happened for me in years. Every once in a while I’d have one normal bowel movement, but it was never more than a day or two in a row. I’m really hoping this continues to help!

The 22nd I had my electrophysiology appointment. I’ve been on Digoxin now for around 10 weeks I think. I’ve had some really good weeks and some really bad weeks as far as my IST goes. For the past 4 weeks or so it has gotten worse, and I had a lot of trouble with it on my first week of school. My cardiology appointments always leave something more to be desired. He was “disappointed” that I wasn’t doing well again. Yeah dude, I am too! He seemed like he almost didn’t believe it, but he didn’t say it out loud. He’s having me do a 30 day Holter monitor, which I really don’t want to do, but if it helps him take me more seriously then it will be worth it. He didn’t actually change anything about my medications, which is kind of annoying. I’ve asked for him to do a tilt table test in the past, but he never says anything about it. I really think I might have more autonomic nervous system issues that we know of, but it’s harder than you’d think to get people to believe you.

I also had a dentist appointment, and they’re normally not very eventful, but I found out the secretary’s son has systemic mastocytosis. He’s in his twenties and has been sick since he was a child and has never met anyone with mast cell issues. I haven’t either, but I’m fairly new to the mast cell world in the sense that I don’t even have an official diagnosis yet, even though I’ve suspected these issues for a long time now. It seems crazy that I’ve been going to this dentist for like nine years now and me and her son have been going through many of the same things at the same time.

I have a follow-up with the allergist/immunologist on February 13th, and a follow-up with the electrophysiologist on March 5th, so I’m hoping I get more answers then!

How’s your January going? Have you had any doctor’s appointments!

The Dark Side of Chronic Illness

***TW/CW: discussion of mental health, suicidal ideation, suicide, and use of cr*pple slur***

Recently I made a post about my feelings behind language like, “you’re so brave” being used in regards to my disability. I wrote about how I don’t see living as a disabled person as an act of bravery, and I do not feel like I am “brave” for handling my chronic illnesses. That conversation cannot be had without talking about the times when people cannot cope with being chronically ill.

Many people who are chronically ill have to deal with both physical illnesses and mental illnesses. Sometimes there is no correlation, and other times the experience of having physical disabilities can spark mental illness. On the contrary mental illnesses can also spark physical illnesses; even though they are sometimes psychosomatic, the feeling of pain can be just as distressing as pain that stems from physical illness.

Chronic illness often leads to isolation, which is a hard enough thing to deal with on its own without being sick. Being in constant pain is also emotionally and psychologically taxing. I’ve personally had periods of time where the inevitability of death was comforting instead of terrifying. I begged God to kill me on more than one occasion, and those kinds of thoughts are not easy to get over. There have been days where I felt as if I couldn’t handle everything and it was all too much. Fortunately, I’ve been able to swallow those thoughts/feelings and haven’t attempted suicide, even when I really wanted to and it seemed like the best option. This doesn’t make me stronger than anyone who has self-harmed or attempted suicide, but I feel privileged that my suicidal ideation did not lead me to actually attempt suicide.

In November of 2017, the creator of the Cripple Punk Movement, Tai, committed suicide. I did not know them personally, but I followed them on social media as well as their friends, who are also prevalent in the disabled community. Their loss is one that really shook me to my core, even though I had no personal connection to them. Tai had fibromyalgia and had dealt with an eating disorder as well as PTSD. They are just one of many chronically ill people who suffered with suicidal thoughts, and debilitating illnesses. Due to the fact that I did not know them, I do not want to make any assumptions surrounding their life or death, however I do think a conversation about chronic pain should come out of this terrible and heartbreaking situation.

Tai was an avid disability activist, which is why they created the Cripple Punk movement in the first place. The Cripple Punk Movement aimed to “reject pity, inspiration porn, and all other forms of ableism and fully support those who struggle with it.” I found liberation and felt supported due to this movement. Their idea’s are incredibly inspiring to me, and I aim to be as strong and care-free as they were. I hope I can use my voice for good and advocate for my communities like Tai did. Staying positive is important, but we so desperately have to recognize the “dark” and horrible parts of being chronically ill.

Suicide is an epidemic within the disabled community. I believe this is due to inadequate care, and an ableist society. Chronic pain, specifically, goes beyond the physical components. Doctors need to recognize how psychologically taxing it is to have chronic pain, while also not belittling us and telling us “it’s all in our heads.” We need support groups and connections with other disabled people. We need representation in the media, and in our daily lives. We need to be seen, but most importantly we need to be heard.

 

 

People had been asking if they could do anything for Tai’s family, and so if you feel inclined, Tai’s family has asked that people donate to The Loft (an LGBT community services center) in their name.

If you’re hurting or struggling please call 1-800-273-8255. You can also chat online with someone if that would make you more comfortable

 

 

 

You’re So Brave

Everyone goes through crappy situations that they can’t control. Some people have had to deal with abuse, others parents getting divorced, and if you’re like me you’ve spent a decent portion of your life being chronically ill. People often tell me, “wow I could never do that”  in reference to my health problems. Honestly, six years ago I would have said the same thing.

I am not brave, nor a “warrior” because I am chronically ill. It’s a bad situation that cannot be fixed. How do I deal with it? I just do. There is no alternative, my only option is to deal with it. I do not feel like I need praise for simply living the life I was given. Humans can handle much more than we think we can. There are a lot of situations that I feel as if I could not handle, yet I know logically, if I was put into them I could make it through. (I also want to mention that some people cannot handle being chronically ill, and it truly is an issue in our community but I’m going to talk about that in another post)

Life isn’t easy a lot of the time, and chronic illness forces you to do a lot of persevering. Living my life as a disabled person does not make me brave, in and of itself. When people say this to me, I hear the under tone of, “You’re life seems so hard, I wouldn’t want to do it.” Sure, some aspects of my life are difficult and sad and sometimes even heartbreaking, but there are so many joyous and positive experiences to be had. Being able to live as a disabled person is a blessing in many ways, and has taught me so much about life and the human experience. I am not brave simply because I am disabled, I am brave because I dare to live a fulfilling life as a disabled person, when society tells me that is impossible.

No I Don’t Care That You Know Other Queer People

“By the way my coworker’s best friend’s sister is gay.”

“… oh, um that’s cool.”

This is a conversation that takes place constantly. If someone knows I’m gay, they always love to tell me when they meet other queer people; as if we’re unicorns. Don’t get me wrong, there are nothing but good intentions behind it, it’s just a little weird. Would you tell me if you met another woman, or some else who had blue eyes? Probably not.

This is different from the typical, “oh you’re gay, do you know my friend Sam, he’s gay too?” situation. People don’t think you know them, they just want to let you know they know other queer people. My older sister is the main culprit of this in my life. She lives in a major city, so of course she knows/is friends with/ runs into a lot of queer people, and she lets me know. Every. Single. Time. Maybe I’m a huge jerk for not caring, but honestly it’s just not that interesting to me. I consume a lot of queer media, so I constantly see other LGBTQIA+ people. Plus, I’m in college, so I see a decent amount of visibly queer people in my day to day life.

Being able to see visibly queer people is so so important, and I do get excited when I see other people people just living their normal lives. I feel a sense of familiarity and kinship with other people in the LGBTQIA+ community. Someone telling me about how their barista is gay though, isn’t really something I care to know. What is the correct response to “Oh! I was meaning to tell you my waiter the other day is gay.” ? Do you want me to jump up and down and beg you for more details? I usually go with, “that’s cool” or “oh wow” which both come out sounding incredibly unenthusiastic, no matter how much I try and pretend to care.

I never confront anyone about this, because I know they are just trying to be nice. It in no way makes me mad, or even annoyed, I just find it incredibly odd and kinda funny. Does this happen to you? If so, how do you respond? I feel like this definitely isn’t just something I deal with!

 

It’s Been a Minute: Life Update

It’s been a little while since I talked about what’s going on in my life, so I thought I would catch you all up!

First, I got the results back from my endoscopy and they were inconclusive. I had elevated mast cells in my biopsies, but they weren’t nearly high enough to diagnose mastocytosis. I had a serum tryptase test done to see if I had any elevated levels there, and it came back normal. It looks like I probably don’t have systemic mastocytosis, but my gastroenterologist is referring me to a new allergist/immunologist, who I have an appointment with on the 16th. Having negative results for tests is a good thing, because you don’t want anything to be wrong with your body, but it is also incredibly discouraging when it was the only new idea a doctor had in a long time. Since, I looks like I don’t have any mast cell issues, the gastroenterologist diagnosed me with post-infectious IBS.

I continued to have trouble with exhaustion due to my IST, so the electrophysiologist upped by digoxin dose. It had been working really well, but the past couple of days I’ve been exhausted and have felt my heart racing. It’s hard to know if the medication is no longer working or if I’m just having a rough few days.  I have an appointment on the 22nd with him, so we’ll see what he says. The gastroenterologist put me on Linzess for my IBS, and it hasn’t worked. It’s supposed to help with chronic constipation, but instead it’s making me have no bowel movement for two to three days, and then diarrhea. I stopped taking it, and became incredibly constipated immediately. Luckily, I see him on the 8th so hopefully he has some ideas on how we can get my digestion under control.

With school starting back on the 16th, and three doctors appointments in January, this is going to be a pretty busy month for me. I’m also starting to volunteer at a nursing home this Friday, which I am excited about. I feel ready to go back to school, mainly because I’ve been bored. I really hate feeling unproductive, but having the time to relax is nice, and something I try to take advantage of. I hope you all are doing well, and enjoying the new year so far!