Thursday, March 12, 2015

Facing Forward: Leslie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!  

Name: Leslie
Location: New York currently, but my heart and home will always be Michigan
Diagnoses: RA and lupus
Age at Diagnosis/Diagnoses: 22

How are you currently treating your conditions? 
I just started taking Imuran.  I am also on Quinacrine, along with some other medications.  I've previously been on Methotrexate, Humira, cellcept, tacrolimus, and hydroxychloroquine.  There might be others that I have forgotten, but those are all the ones I can think of.  Because I have both lupus and RA, that has made my diseases somewhat hard to treat.  For example, I had to go off of Humira because it caused my lupus to flare so bad that I was incapacitated for two weeks.  

I enjoy kickboxing.  I have had difficulty keeping up with a workout routine, so I just try and push myself to walk and move as much as I can.  I try to take the stairs when I can, although going down is much easier than going up.  

What are the biggest challenges you have faced since your diagnosis?
My biggest challenge has been finishing my PhD program.  I was diagnosed at the end of my first year of graduate school.  While I was determined to finish school, and I did, I also decided that I didn't want to go the academic route and wanted to help patients, specifically chronically ill students in college and graduate school. I discovered there was a real lack of health or support for chronically ill students in higher education.  So I decided to get a second master's degree in health advocacy from Sarah Lawrence College (that's why I moved to New York), which I will be finishing this May.  My most recent challenge has been working basically full-time, and trying to balance work and life with illness.  This will continue to be a challenge for me.  My boyfriend of three years, and I, just got our first place.  That's proving to be a challenge, too, both in illness- and non-illness-related ways, but we'll get through it.    

What are your favorite tips and tricks for managing everyday tasks?
Naps help me tremendously when I have the time and ability to do that.  I also always have ice packs on hand, in the freezer and ready to go. I am trying to learn to delegate and let other people do things that they can, and I might not have the time or energy to do, but that's a tough skill to learn.  My boyfriend (who is in the picture with me) sometime tries to pick up the slack, which can be helpful.  I worry less about the times when I am capable of doing the everyday things, and worry more about whose going to take care of them when I can't.  

Lately, I've been trying to experiment with makeup a little bit more.  There are some days when I simply don't have the energy, but when I do, it feels nice to look nice even if, inside, I don't feel that way.

How do you manage to keep facing forward every day?
I don't really have a choice.  I don't meant that in a negative way.  I have always been a go-getter, so nothing or nobody is going to stop me.  In fact, doubters only make me want to try harder.  I have come to have some amazing experiences as a result of being a chronic illness blogger - I started my blog a week after I was diagnosed - and I wouldn't change that for anything.  Knowing that there are people out there who want to hear my story and think it's important, that's truly what keeps me going.  I always knew I wanted to make a difference in the world, but I never quite knew how I was going to do it until I got sick.  

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would say, don't be so hard on yourself.  Bumps and bruises are a part of life.  You couldn't have done anything to prevent getting sick, but ultimately, getting sick led me to where I was supposed to be.  If someone would have told me that at the time, I would have thought they were nuts, but it's the truth.  

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