Invisibility at its finest

 

Diagnosis: a chronic invisible disease discovered after a 9 inch small bowel resection and appendectomy.

Age: 18

Treatment plan: immunosuppresants used in leukemia treatments, can cause cancer and leukemia when not used to treat cancers.

Patient: ME.

Writing those few words still takes me a minute to remember how terrified I was nearly a decade ago.  I was graduating high school soon and looking forward to going to college, but my bowel had other plans.  I was diagnosed with Crohn’s Disease, and inflammatory bowel disease that can affect any part of the digestive tract, joints, and eyes.  There is no cure, only treatment to hopefully get to remission.  I lost nearly 30 pounds in a few months, and the pain was unbearable.  I almost had a ruptured intestine which would have likely led to septic shock.  But I didn’t, I had life changing surgery at the period of your life when everything is changing very quickly.

My road ahead would not only include recovery from surgery, but also continual blood work for the next six  to nine months to monitor my liver, kidney and blood counts to ensure that I would not develop any of the unwanted side effects from an immunosuppressant.  I got sick often with sinus infections, and strep throat, but I am in college and doing well, making friends and growing up with an invisible disease.

Flash forward a few years, and I lobby on Capitol Hill for patients of Inflammatory Bowel Disease, and meet some of the strongest people I have ever met through the Crohn’s and Colitis Foundation of America.  I am doing well on my medication, and on time to graduate with my Bachelor’s degree in Forensic Chemistry.  My friends are great, and don’t care that I can’t have the hot wings or salad at dinner, and always make sure if we are having a get together that there is something I can eat.

Skip ahead a few more years, and I am graduated with my BS and starting a new Master’s program in Analytical Chemistry.  I have worked a few different types of jobs, ranging from a drive in movie theater to a high tech laboratory, and really have been feeling well despite an increase in my immunosuppressant to attempt to get me back into remission.  Graduation comes and goes, and soon I enter my new current journey, for my PhD in Chemistry at Temple University.

Looking back, it is almost silly how terrified I was when I was first diagnosed.  I led a normal college life, easily making friends and keeping in touch with many over the last decade.  I wasn’t always in remission and had a few scares with blood work, but overall this invisible disease has been that, relatively invisible.  I get tired more often than other 27 year olds, and if I get a cold, I am typically sick for a week or two, but these are all manageable things.  Just because they are manageable doesn’t mean it is easy,  you could have instances when friends want to get together but you can’t because you are literally so exhausted from the week that you just stay home and sleep, or you get sick quickly at work because some bug is going around and need to take time off.  It is frustrating that is for sure, but I am happy that I have done what I have up to this point in my life.  I thought this disease was going to ruin my life, but I have been able to live and love and laugh despite having a chronic illness.  Things changed unexpectedly in March 2008 but that doesn’t stop me from living my life to the fullest, and if you have an invisible or visible disease, it shouldn’t stop you either.

Yes, some days are hard, but you’ll get through it with the help of your family and friends.  Sometimes, you’ll need to take that sick day because you have the worst cold that year and here is the breaking news: it is okay!  Knowing your limitations with your disease is something that is important to learn and manage with time and stress levels always changing, but you can do it.  I never thought I would have to worry about being the sick person or knowing where the closest bathroom is, but I have been doing it for nearly a decade, and things honestly, it just became second nature to me.

So whether you have a chronic illness, or have a family member or friend that has one, know that everyone’s journey is different.  Some people have harder times coming to grasp with a diagnosis or daily symptoms, so don’t compare yourself to other people.  Your journey is YOUR journey.  If you are looking for support outside the seemingly healthy and clueless people that are your friends and family, consider looking for a support group, or better yet create one yourself.  One of the most difficult things to remember if you have an invisible disease is that it is invisible.  You may feel it every day, but others don’t that is why you need to be your own advocate, and your best friend when dealing with the disease.  Whether you are just starting the journey as an invisible disease warrior, or have been at it for years, just take satisfaction in your daily accomplishments, no matter how small or large, and most importantly remember you’re not alone.

Taryn is a 27 year-old Physical Chemistry PhD. Candidate at Temple University. She loves watching and playing sports, advocating and educating people about Crohn’s disease (Crohnie for life since 2008), hanging out with her family and friends, and most importantly talking to new people about anything and everything! Her attitude about how to look forward and stay positive was really fostered at the University of Scranton, where she actually met HKP. Taryn absolutely believes a strong community can help you through anything.

Slow down sometimes

Slow down sometimes…

Being in academic research means long hours consisting of experiments, meetings, and of course, data processing. I often spend my week working 70 hours or more especially when experiments are working and you are on the brink of discovering something new and exciting. I don’t sleep much, or well for that matter, and I often am consumed by my work at home, logging in to my work computer to get that extra processing started before I go to bed for the night. Although working hard, and enjoying what you do are important things in any career, I often feel like I am so overwhelmed with the fear of not doing enough, mainly because I hold myself to such a high standard. You don’t have to be in research academia to feel this way, and I bet juggling multiple jobs, or having a few kids can leave you feeling almost burnt out, but I want to remind you…SLOW DOWN.

Yes, you are incredible for working as hard as you do, whether it is taking care of a family or working that 9-5 job plus some overtime. But for YOU, just slow down once in a while; whether it is taking an hour out of your day to exercise, craft, or sit in silence, just remember to recharge. I always tend to forget, and it usually takes a few nights of not the best sleep and my boyfriend reminding me that the work will get done, and that doesn’t mean I can’t crotchet or cross stitch for an hour, or take my dog to the dog park and just relax. Being highly productive is important, but it is also important to take that time for you too.

So next time you work a crazy week, or have a lot of family obligations, please just remember to take care of yourself. Whatever time you can spare, whether it is 15 minutes or more, just sit and relax. The best you isn’t seen when you running on empty, the best you is when you are rested and relaxed to take on whatever the world may throw at you.

Work hard, but remember to slow down sometimes.

Taryn is a 27 year-old Physical Chemistry PhD. Candidate at Temple University. She loves watching and playing sports, advocating and educating people about Crohn’s disease (Crohnie for life since 2008), hanging out with her family and friends, and most importantly talking to new people about anything and everything! Her attitude about how to look forward and stay positive was really fostered at the University of Scranton, where she actually met HKP. Taryn absolutely believes a strong community can help you through anything.

I HATE going on vacation

Dear Puzzle Pieces,

I don’t know about you but I hate going on vacation.  Let me rephrase that and be a little more specific; I HATE knowing I get to go on vacation because everything that typically has to be done before I leave on vacation.  This year I have about 6 experiments and another draft of a HUGE presentation planned to do before I go “off-the-grid.”  I have to make sure all safety considerations are followed; chemicals and supplies ordered that I could need when I get back, check with any collaborators to make sure we are on the same page, and make sure I have a plan on what I am doing when I get back. Then on top of this I have to do laundry, clean the apartment, kennel the dog, pack my bag, drive there in awful traffic, it NEVER ends…

Believe it or not I just spent 143 words looking at all the problems and I am bummed out, and it snowballed way out of control, in a BAD way.  143 words were all it takes to change something that would be a relaxing time that should be used to recharge my batteries into something that sounds awful and unenjoyable.  That is all it takes to make something fun seem burdensome.

I want you to think: How often you do this every day?  Plan on a lunch outing, and completely focus and become miserable about the traffic getting into work?  Complain about seeing family because you have other things to do that you may deem more important in that quick second?  Now imagine this: you focus on the GOOD.  Forget the traffic on the way to work, and think about what awesome food you are going to order with your friend that you haven’t seen in a while.  Making memories with your family and drinking in those moments, because things can change in an instant.

So instead of focusing on everything that has to be done before vacation I am actually looking forward to going to the beach and sinking in the sand, playing can-jam and getting slightly overly competitive with family, flying kites outside the hotel and probably crashing them into the sand, and more importantly making great memories with great people.  I don’t know about you but my mood completely switched from that first paragraph to this one.  I CAN NOT wait for vacation and I hope you have seen how important changing your perspective is to having a better attitude.

I challenge you to stop one negative snowball of thoughts a day for the next week, and see how you feel…I have a feeling you may be less stressed and enjoy those small victories or positive moments during your day a little more.

Atoms, Erlenmeyers and Love,

TPA

Taryn is a 27 year-old Physical Chemistry PhD. Candidate at Temple University. She loves watching and playing sports, advocating and educating people about Crohn’s disease (Crohnie for life since 2008), hanging out with her family and friends, and most importantly talking to new people about anything and everything! Her attitude about how to look forward and stay positive was really fostered at the University of Scranton, where she actually met HKP. Taryn absolutely believes a strong community can help you through anything.

Stay positive, you’ve got this.

I wake up every day and commute about an hour to work. I walk through college kids who are full of life and eager to start their journeys, while I meander up the stairs to my office. A room filled with cubicles and some of the smartest people you will ever meet. And I sit there, and wonder, how did I get here? I am a research scientist. I have a bachelor’s degree in forensic chemistry, a master’s degree in analytical chemistry, and here I am, working towards my PhD in Physical Chemistry. These words may seem foreign to you but it is my daily life. Most of these days are met with failure, whether a sample gets contaminated or an experiment goes inexplicably wrong. I go home exhausted and angry at some inanimate object, mainly particles that are the size of one billionth of a meter, which yes I know, sounds absolutely absurd. But on good days, I am on top of the world, on the cusp on understanding something no one on the planet could even imagine. This is life and this is what is real.

I know most of you won’t understand the difficulties in academia and pursuing this type of higher education, but there are things that still can be easily paralleled between your experiences and mine, we are all human and this is how life goes. We want that promotion, or published paper, or even to wake up and have the desire to go work. Finding that purpose every day is what connects us all, and more importantly helps to make you a better teacher, student, family member, or friend. Learning to take the bumps in the road with stride, and making the best out of those great days, and appreciating your support system on the bad ones is the thread that truly connects us all.

I challenge you to be okay with your difficulties and to wake up the next day and stay determined. On the days when you hit all the green lights going to work, or for me when my train is on time, enjoy these small but happy circumstances. Enjoying the best things in life, no matter how small, these things are what helps us get through the darkest days. And right now, I don’t know about you, but I am enjoying all the little things more and more.

Stay positive, you’ve got this.

Taryn is a 27 year-old Physical Chemistry PhD. Candidate at Temple University. She loves watching and playing sports, advocating and educating people about Crohn’s disease (Crohnie for life since 2008), hanging out with her family and friends, and most importantly talking to new people about anything and everything! Her attitude about how to look forward and stay positive was really fostered at the University of Scranton, where she actually met HKP. Taryn absolutely believes a strong community can help you through anything.