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.
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!
Original photo courtesy of Stokpic.
This post was written by my little sister McKenna about what it’s like having a sister with a chronic illness.
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.
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.
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.
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.
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.
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.
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.
Several months ago a fellow blogger and I attended a lifestyle blogging conference that I really enjoyed. However, when a group would get together and ask each other what they blogged about, most answers would be fashion, or make up, or maybe something more serious like self-love. The groups would normally ooh and ah at everyone’s topics and discuss them for a minute or two. But when it got to me, and I said I blog about chronic pain, I got a way different response.
Get inspired: Champion YOUR Chronic Pain
At first people would look a little surprised (which I couldn’t blame them for; I was following the girl who blogs about cupcakes after all) and then they would get a sort of blank look on their face. Last, they would scrunch up their nose and say, “Well that’s not very fun…” and then hurriedly move on to the next person. And this was not an isolated incident! Five, yes FIVE, people said that to me. And then there were the variations like, “Oh, I’m sorry honey.” I appreciated the sentiment, but I did not appreciate the immediate change of subject that followed. One woman even said to me, “Wow. Well, that’s morbid” and then walked off looking disgusted!
Throughout the day, I just smiled and made jokes and laughed it off. But you know what I was thinking the whole time? They are all absolutely right. Chronic pain is NOT very fun. It’s not fun to deal with, it’s not particularly pleasant to talk about, and most of the time it is difficult to write about. What these women failed failed to realize as they quickly dismissed my often harrowing topic, was that even though it’s not fun, it’s something that needs to be discussed. Because I HAVE to deal with it, I HAVE to talk about it, and it’s important to write about! Over 100 million Americans suffer from chronic pain, but because no one ever wants to talk about it, chraintims* like me get ignored and forgotten!
As a spoonie/chraintim*, there are certain struggles in life you have to learn to accept. These often include being fatigued, increased irritability, and for many of us, trying to get those damn patches not to fall off. I wear two different types of patches: I wear a 25mcg/hr Fentanyl patch and a 0.2 mg/day Clonidine patch. When I first started wearing them, they were such a pain! (No pun intended. :P) I would try to find a fairly hairless area that I didn’t have wipe down with alcohol, and hold the patch on for 30 seconds like the doctor/pharmacist/box recommended and hope for the best. My patches would dry up and fall off just walking around, but the worst was the shower. I would lose at least one patch every shower I took! This made me have to apply patches more frequently, which meant I ran out of patches too quickly, which meant I didn’t have enough medication in me, which resulted in higher pain levels. You see why this is a real problem?
Well after wearing multiple types of patches for the past five and half years, I’m going to share the tips and tricks I’ve learned over many moons to getting your medicine patches to actually stay on your body! I’ll start off with my main three ways to apply patches, and then I’ll share some general tips that most people wouldn’t even think about when giving directions for making a medicine patch stick.