Where Have the Years Gone? Life Update!

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Where oh where have the years gone?! I haven’t written on this blog for almost four years (right before I started at Cal State, Northridge). At first I didn’t write because it was such a big change and I was so busy adjusting to my new life, then I didn’t write because as time went on the task of writing an update got more and more intimidating. However, lately I’ve had a jolt of creative inspiration and have loved getting to share that side of me with everyone!

Since graduating college last spring, I’ve taken some time to reflect back. I have grown immensely over the past four years and I wanted to take some time to catalog a little of what I have learned for myself, as well as share it with friends and family.

August 2015 – August 2016

A Year of Change

This year started with me moving into the dorms at California State University, Northridge (CSUN). Finally moving out and away from my parents and siblings was a huge change all on its own, plus I had the extra challenge of still dealing with my chronic illness. I joined a sorority that semester and I can honestly say that was the best decision I made in college. I cried the night before recruitment started because I was afraid no one would want me because I didn’t look like sorority girls are “supposed” to look. Turned out I had nothing to worry about! My sorority (and many others on campus) was all about girl power, sisterhood and who you are on the inside. They didn’t care at all what we looked like! To this day my best friends I met in Tri Delta.

The day I got my bid to join Tri Delta!

At the end of my first semester in at CSUN I got into this amazing program I had learned about at my community college called the Star Fellowship through an organization called Running Start. Every semester this organization picks seven collegiate women from across the country, pays for them to live in D.C., gets them a job working for a Congresswoman and gives you high level political training. This was obviously a once in a lifetime opportunity. But it was still hard to make the decision to go. I had just moved to a new city and settles into a new school. Now they wanted me to move across the country all by myself? I was terrified; and that’s how I knew I HAD to do it.

Washington D.C. was simply amazing. I entered that program a Deaf Studies major (my A.A. is in American Sign Language), but left a Political Science major. I realized throughout that program that even though I believed in equality and thought women could do anything, I was still putting myself in a box. Growing up I was in ASB in high school, Chair of my city’s Youth Advisory Committee and a Student Senator at my community college. I still never thought there was a place for ME in actual politics. In D.C. (and especially through my program) I saw so many incredible women accomplishing things I didn’t even know were possible. I knew I had to become one of those women. Running Start changed my life and I will forever be grateful. I could write an entire post about what I learned in D.C. (and maybe I will someday!), but here are the highlights:

  1. You can do ANYTHING if you work hard enough. I left D.C. feeling more inspired than I had ever felt in my life. I saw and heard from people who had come from nothing, but took every single opportunity to become great.
  2. 20-somethings run Congress. All the staffers, all the people writing the bills that become laws, making everyday deals for everyday Americans… All young people (because they are the only ones willing to endure the crappy pay). Those young people are AWESOME!
  3. Congress, and the government in general, is not as broken as it seems. I worked there in 2016 and there is just so much that goes on that no one cares to write about. I worked for a Democrat, but on each side of our offices were Republicans. We said hi to them everyday and often had lunch together. There are bipartisan deals for the public being made everyday. Republican Members of Congress could often be found in my Congresswoman’s office working on a new bill. There’s a lot that needs to be fixed, but there’s still so much good happening on Capitol Hill.

After my program ended I stayed in D.C. for the summer and worked for a company called Her Corner that helps women entrepreneurs grow their businesses. This was my first time working for an actual company (not a non-profit or the government), and I learned a ton about the industry and myself. I was SO broke that summer though and literally paid to live in a portion of a living room in an apartment. Definitely worth it though!

August 2016 – August 2017

Becoming Busy As Hell!

Almost immediately after coming back from D.C. I moved into an apartment with three other girls from my sorority. Apartment 112 (and those girls living there with me) would turn out to be an important place in my life. The hardest part about the beginning of that semester was that I decided to wean myself off of a lot of the medication I was taking. I felt good and strong after coming back from D.C. so I took myself down to the least possible amount of medication I could still function on.

As soon as I came back I got an officer position in my sorority and became very involved there. I saw all my friends having fun while I was gone, so I was excited to finally get to participate! I got my first Little, Sam (who has since grown her branch of the fam to be HUGE)!

I also joined the student government as an Elections Committee member that fall. That semester I became close to one of my other best friends from my sorority, Brooke. She was Head Delegate of our university’s Model United Nations team at the time and has always been very politically involved like me. Over the years we have literally been on the other side of the world from each other, but we have always stayed best friends. I should also mention that I also restarted a job for the school’s IT department that I had my first semester there as well.

I worked for Bryan Caforio’s Congressional campaign in 2016

I also worked for a Congressional campaign during the 2016 election cycle (I had worked part time for Hillary back in DC as well). Both my Congressional candidate and, of course, Hillary lost. Like a lot of America, I was absolutely devastated and then ready to make change. I was so ready to have a Madam President. I had worked so hard and was so surprised. I will never forget the feeling watching the results come in at that campaign office or walking around what was supposed to be a Democratic victory party.

The next semester is where I went a little crazy… Okay a lot. WARNING: DO NOT DO WHAT I AM ABOUT TO DETAIL. Spring 2017 consisted of:

  1. Another, bigger officer position in my sorority.
  2. Still working for the school’s IT department.
  3. I got promoted to Chair of Elections in the student government (a paid position that is time consuming).
  4. I joined Model United Nations (this is also a HUGE time commitment)
  5. I did a paid social justice fellow with Jewish World Watch (a non-profit whose goal is to educate about, prevent and end genocide worldwide).

By the end of the semester I was having panic attacks in the parking lot at school. I was a stressed out mess. I most definitely learned my lesson here. I’ve always liked to be busy and involved, but this was not that. This had me feeling like I was failing in every aspect of my life because I was spread too thin and too tired.

Right after moderating the student government Presidential debate with the eventual President and VP.

I am proud of the fact that I did an excellent job as Chair of Elections and got the highest voter turnout in CSUN’s history! The next administration hired me on as the Chief Policy Advisor to the President. I spent that summer resting from the crazy semester, working for my student government and preparing to be a Recruitment Counselor for Fall 2017 recruitment! I was also chosen as Head Delegate for our Model United Nations program that fall, which was a huge honor. I know it still sounds like a lot, but I promise this next semester was far more manageable!

August 2017 – August 2018

A Year of Accomplishments and Health Problems

So fall 2017 started out with sorority recruitment and I LOVED being a recruitment counselor (the experienced Greek member who helps women going through the recruitment process). My partner Shannon and I had a blast together and I am so glad we became friends through that process! I still love her to pieces!

Once recruitment was over I got my second Little, Erica (whom I adore)! I ended my last term as an officer in my sorority strong with doing a special holiday party where we honored the seniors going alum that semester. (This included my Fave and longtime roommate Sam!)

Model United Nations was also incredibly successful in fall 2017. The first competition of the season I won first place (“Best Delegate”) out of 120+ participants, which made me feel amazing! Next was our international competition in DC (which I LOVED going back to! You better believe I went back to the Capitol Building to say hi to some people!). We held our place as number one team in the world! My partner and I came home with the first place prizes of “Outstanding Delegates” and “Outstanding Position Paper”. My team came home with the first place title of “Outstanding Delegation”. It made all of our late nights worthwhile. We also did a regional competition in Seattle that semester, where we also won “Outstanding Delegation”. I got mentioned as Head Delegate in my university’s 60th Anniversary Magazine for our team’s accomplishments.

With my Model UN awards after winning in DC!

I did a lot of good work as Chief Policy Advisor to the President as well. Unfortunately, I had some serious health issues at the end of that semester. I went to the ER four times and was eventually diagnosed with pneumonia and bronchitis, which was made infinitely worse because of my pre-existing health issues. As the next semester was my final one in college and my health was so poor, I didn’t continue in student government in the spring.

In the spring all I was doing was school and my last semester in my sorority (not as an officer). This was the first time in my entire college career not working while going to school, but I was so sick, I couldn’t have worked anyway. One of the many problems that semester was gallstones created from medication and other health issues. I spent my spring break getting my gallbladder surgically removed. Fun.

In my sorority I had my last recruitment, my last retreat, my last formal, etc. It was sad, but also felt right. I also truly enjoyed the senior celebrations and my sister (who everyone already knew) became even more famous in my sorority for her hilarious speech at the family ceremony.

The one extra thing I did participate in, was planning the March for Our Lives Nation Walkout Day at CSUN. Like many, I was inspired by the survivors of the Parkland Shooting in Florida and decided to take action. A couple of neighboring high schools ended up coming out to join our walkout and the university’s administration came out to show support as well. In the end 200+ people showed up and it was amazing and powerful! So many different people and organizations on campus jumped in to help plan and organize.

That May I graduated with a degree in Political Science and a focus in Public Policy. I graduate in the top 3 percent of my class and as a member of four honor societies. I was also chosen as the student speaker for my graduation ceremony and spoke to over 10,000 people that morning. I worked my ass off in college and I couldn’t be happier to be done! LOL

That summer was amazing for a lot of reasons, but the highlight was definitely going on a family trip to Hawaii for the first time! It was so gorgeous, relaxing and we all got to be together.

One of the MANY incredible photos we got in Hawaii.

Since August 2018

What is Adulting?

After graduation, I moved home. My sister actually moved into my old apartment where two of my original roommates still live (told ya 112 would be important ;P). I, of course, worked on the 2018 election cycle in LA again. I helped with Christy Smith’s Assembly campaign AND SHE WON!! It had been a red district for so long and it was such a close race, so it was super exciting!

In Christy Smith’s campaign office with my friend Robby (who got me involved in Caforio’s Congressional campaign in 2016 too).

While my main focus has been my health, I also began working for an amazing social impact company called Mighty Peace Coffee! We are helping to create better communities and economic stimulation in Congo through buying and selling truly Fair Trade coffee beans. It’s a mission I believe in and an incredibly team to work with. I’m also working at a local restaurant part time in my hometown.

Lately I have really struggled with the fact that I’m not out there doing amazing things like I see my peers doing. I wish my health didn’t hold me back in the way it always seems to do. But if there’s one thing I know, it’s how to work through a health setback!

I know this post was sooooo long, so major props if you’ve made it to this point! Like I said, this post was as much for me as it was for anyone else, so I’m not that concerned with length here. HOWEVER, I am planning on doing a complete site redesign in the next few weeks and posting more regularly! So please sign up for alerts if you’d like to get notified next time I post.

This is me now, January 2019 and ready to take on the world!

Wishing you a wonderful day and extra spoons!

Jaelin

Why We Have to Keep Dreaming!

We Have to Keep Dreaming!

Now I know what all you spoonies are thinking, “I dream plenty…since I’m asleep most of the time!” And although I know it can seem like the only dreams within our grasps are the ones we have while sleeping, that simply isn’t true. If we don’t keep an optimistic vision of the future in mind, then really, what’s the point?

We have to set goals for ourselves. And no, I’m not talking about the small realistic ones we set everyday like getting out of bed or getting a bit of cleaning done. I’m talking about big goals for the future. For example, I want to be a pediatric surgeon someday. I know I will achieve this goal despite my chronic illness, and most days that dream helps me deal with my CRPS. When things seem truly hopeless and I just start crying because I know this pain will never end, I remember that I have to keep going so someday I can help someone else going through a similar problem.

And I know it’s easy for me to say. I’m young and have my whole life ahead of me, but I’ll tell you a little secret, so do you! People are always talking about how young people having their “whole lives ahead of them” as if it’s some rare privilege they wish they had. And while I recognize and appreciate the benefits of being young, EVERYONE has their whole lives ahead of them. I’ve seen a 60 year old decide to start a non-profit and change so many lives. I’ve also seen (okay, okay; read about) people waste their entire lives and not accomplish anything past living and dying.

My point is, you CAN teach an old dog new tricks. So if you don’t have a dream, get one! It’s never too late. And if you’re still young like me, it is undeniably easier to just develop the habit of having big dreams now.

[Tweet “It is never too late to get a new dream! #spoonie”]

So dream big. Dream HUGE! Having an ultimate goal and working towards it will distract you from your illness at worst, and completely change your life at best. You can’t lose.

Although it’s cheesy: if you shoot for the moon, you’ll still land among the stars! Be a star. I dare you.

Already have a dream? Let me know with a comment below!

JawSurgeryPain Signature

 

 

 

Original photo courtesy of Stokpic.

11 Songs to Motivate You During Tough Times

11 Songs to Motivate You During Tough Times

Music is an extremely powerful influence in many people’s lives. It is especially important for us spoonies to listen to music, recent studies show. Studies show music reduces stress and anxiety, pain, and improves the immune system! (Read more about it here.) Since all of the side effects listed usually impact a chraintim’s* life on a daily basis, listening to music is especially important.

However, it can be hard to find just the right mix of music to listen to depending on your mood or state of mind. When I am going through a particularly hard time (which usually means my pain is flaring up), listening to music can really improve my mood and how I feel about my situation. But when you are enduring that difficult time, you don’t want to be searching for just the right music and spend time compiling a playlist, right? Well that’s no longer a concern! Here I have compiled a list of my favorite songs to motivate you during tough times. (Click here for the songs all set up in a playlist on YouTube.)

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What It’s Like Having a Sister with a Chronic Illness

What It's Like Having a Sister with a Chronic Illness

[disclaim]This post was written by my little sister McKenna about what it’s like having a sister with a chronic illness.[/disclaim]

I have and always will be close to my sister. This is just a small setback in our long journey of sisterhood.

When my sister had her first jaw surgery I was in the seventh grade and 12 years old. Jaelin was 15 and in the ninth grade. I looked up to everything she was and did. I remember the night before her surgery sitting on her big bed singing show tunes together. Although I’d never tell her this, I loved being in her room and sleeping in the bed next to her. It was like a sleepover every night. We sang all the time- I pulled out my flip phone and recorded my sister’s “big solo” on karaoke. Suddenly, I just started crying. All of the sudden the thought came into my head “what if she can never sing again?” I remember this moment like it was yesterday. My sister hugged me and assured me that everything would be alright.

The day of the surgery I lost my best friend. I saw her in the hospital and cried. She lost a lot of weight and her hair started falling out. I watched my once joyful, bubbly, outgoing sister become scared. I watched her body shake in pain and her once bright eyes and can do attitude become dull, dark nights. My hero, who wanted to become a doctor and save lives, had mostly lost her own.

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How to Enjoy Your Vacation, Despite a Chronic Illness

How to Enjoy Your Vacation, Despite a Chronic Illness

Having a chronic illness is always hard, but it can be especially difficult during the summer. Why? Because summer is when everyone is having fun and being carefree! People want to call and hang out with you on very short notice, and often times hanging out can mean going to the beach or to an amusement park or going hiking. These are all very tiring activities for someone with a chronic illness. But what may be the most difficult about the summer months is going on vacation.

Right now you are either scratching your head thinking, “Why would a relaxing vacation be difficult?”, or nodding your head and thinking, “You’re preaching to the choir girl!” Allow me to explain for those head scratchers. For healthy people, yes, vacations are a fun escape from everyday life where you get to do something new, visit somewhere exciting, or just relax on a beach. For us spoonies, vacations are a stressful, uncomfortable, and a tiring week of craziness. Packing takes energy. Traveling is often painful and energy taxing. And believe it or not, even the vacation itself is uncomfortable, draining, and painful.

Last month I was lucky to enough to get to visit New York City for the first time with my mom, sister, and aunt. My loved ones had planned this trip for my sister and I as a graduation present since I had just graduated with my Associates degree and my sister had just graduated high school. When my mom told me we were going I was of course happy and thankful, but another part of me, an admittedly big part, was dreading the trip. I knew the trip would not only be painful and tiring, but that I would slow the rest of the group down. I almost told my mom I didn’t want to go, but it was such an amazing opportunity, and she had put so much thought into the trip. So instead I decided to do what I always do, fight through my illness and try to have a positive attitude while doing it.

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Why One Person Can Make a Difference

Why One Person Can Make a Difference

In general, I don’t think most people truly believe that one person can make a real difference in the world. I do. Why? Because one person changed my life.

When you have a chronic illness, you see a lot of doctors. Most of those doctors will dismiss you, some will believe you, but very few will actively try to help you. I’ve been lucky enough to have two doctors in the last category.

The first doctor who made a difference was my ENT (ears, nose, and throat) doctor. This doctor had no reason to really put much time or attention into my case, but he did, because he realized I needed someone to care about me. The first year after my surgery was very difficult because I couldn’t get anyone to believe that I was in an unprecedented amount of pain. (Click here for my full story.) My surgeon just kept saying, “Well, you shouldn’t be in pain”, even though I kept saying, “Well, I am!” Since the pain from jaw surgery started to spread all over my face, we saw my ENT just in case my sudden onset of pain was somehow completely unrelated to the reconstructive jaw surgery I had just had.

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Keeping the Good Days Good

GoodDaysGraphic

Last Thursday my blog post was about recognizing some “perks” of having a chronic illness. Perks is in quotation marks because I know first hand having a chronic illness totally sucks and there is nothing truly good about having to deal with one. This was just me finding the silver lining and discussing some positive things having a chronic illness has brought into my life or made me realize. Among other things, I discussed the pros of having a handicap parking placard (which is confusing since I wrote an entire blog post about how we are NOT “lucky” to have the placard). At the end of this pro, I said even on the rare days I am feeling good, I still have my parking placard.

Some people got upset with me for this, saying I should not be using my handicap placard if I am feeling good that day, or as one person put it, when I “know I don’t need it”. I would like to clear up the confusion this statement caused.

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I’m that Somebody (Raise Awareness for Autoimmune Diseases)

I'm that Somebody (Raise Awareness for Autoimmune Diseases)

I love this quote by showstopping comedian and actor Lily Tomlin, because people complain about a lot of things. We complain about why there isn’t more to do in our town, why there isn’t a stop sign on that dangerous street, or even just why the toilet paper isn’t in the holder! While we are in the habit of noticing all of the problems around us, we often forget we can be the solution!

Something us chraintims* are always complaining about is that the general public is grossly unaware of invisible illnesses. Because we don’t “look sick”, people don’t realize our limitations, and research to cure our currently incurable illnesses (try saying that five times fast) go unfunded! I mean, who is going to donate to research for a disease they’ve never heard of?

Now some of us do try to help fix this problem with our blogs and social media accounts. But each of us trying to raise awareness for our diseases separately is a whole lot harder than doing it together. Luckily, one fellow spoonie named Barbara Ramm decided to create a way for all of us with autoimmune diseases to raise awareness together. Barbara, and her daughter Haley (who plays Brenna on the hit ABC Family TV show Chasing Life), have started the hashtag #FightforImmunity as well as the Pillow Fight Challenge. This is similar to the ice bucket challenge, except it is a pillow fight! (This is the perfect representative challenge since most of us with autoimmune diseases spend most of our time in bed.) To do this challenge, all you have to do is film you and some friends having a pillow fight, post it on social media with the hashtag #FightforImmunity, and then challenge other friends to do the same! Check out the cast of Chasing Life doing the challenge here.

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Chronic Illness – The Pros List

Chronic Illness - The Pros List

Let’s get one thing straight: having a chronic illness absolutely, positively SUCKS 99.99% of the time. However, in order for chraintims* like me to cope, we often have to find a way to look at the bright side of things. And although the cons far outweigh the pros, there are a few “perks” to having a chronic illness.

I’ve compiled the pros list here:

1. Healthier hair. So here’s the thing, when you feel like absolute crap and have already quit all of your extra curricular activities, you don’t get out much. And to completely honest with you, if I’m not going out, I don’t waste my spoons on a long, energy sucking, and oftentimes painful shower. This means I don’t wash my hair very often, and even when I do, I hardly ever take the time to style it with heated products (hair dryer, flat iron, etc.). So overall, in the past five years my hair has grown exponentially more than in the two years after I originally cut my hair short. It’s also much shinier and thicker. This “perk” doesn’t apply to every person with a chronic illness. When I was on my highest dosage of medication, my hair would fall out in big chunks. Others have medication or diseases that cause them not to have healthy hair either. But for a certain group of us spoonies, we get healthier hair than the rest of you. Though this may seem like a very small win, it can make all the difference. Sometimes when I look in the mirror and see all the weight that I’ve been forced to put on since my first surgery, being able to look at my hair and say, “Well at least my hair looks fabulous!” can change my attitude for the day.

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“Lucky” to have a Handicap Placard?

"Lucky" to have a Handicap Placard?

If you’re reading this, you have something to be lucky for. You’re lucky you have access to a computer and the Internet and you’re not a starving child in Africa. I’m lucky I have a house to live in, food to eat, and am not dying of cancer. One thing I’m not lucky to have: my handicapped placard. Yet that is what one of my closest friends said to me a few months back. Let’s back up and I’ll explain.

Both my friend and I attend a local community college with limited parking spots. We were both arriving for a student government meeting and my friend had to park a few parking lots away and take a little trek to get to the school. I know this is not an easy walk as I have had to make it on many occasions when handicapped parking had filled up or I was in the process of getting my placard renewed and did not want to park illegally. However, this was not the case that day, so I easily pulled in to a great parking spot near the stairs. My friend and I happened to arrive at the stairs at the same time, and as she was breathing a little harder than usual thoughtlessly said, “Wow, you’re lucky to have that handicap placard!” At this exclamation I stopped walking for a moment and lagged behind as I silently turned into the Incredible Hulk on the inside. Once I got control of myself, I jogged a few steps to catch up to her planning to jokingly mention how the parking space may be nice, but the disease that comes with it sure isn’t. By this point, however, I had missed my chance. She had started talking to another friend that I didn’t know about an assignment for a class they shared. So I let it go. Until now.

Now I know it may seem unhealthy to hold on to this anger for so long, but the thing is, I think she genuinely meant that comment. As in, I don’t think she recognizes I struggle daily with an incurable illness that requires me to count my spoons and stay on top of my medication. And that hurts. Then again, I am excellent at hiding the true effects my illness has on me, though I make sure to talk about it from time to time so my close friends don’t forget about it altogether.

You see, I was a child actor. Yes the kind in LA with plenty of stigma attached to it (which I hope we can all discount since the stigmas attached to being sick are often ridiculous as well). I mention this because I think it’s of note that I have spent a good portion of my life being trained in faking an emotion or a facial expression. I have spent years being taught, essentially, how to become another person when needed. This has come in handy too many times to count throughout my life and career, but never more than when I need to pretend to be well (which is anytime anyone except my family is present). I’ve perfected the art of acting like a healthy person so well, I think people don’t believe me when I tell them the truth.

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