Sunday, October 16, 2016

lupus and ABP

hi everyone!

i hope you're enjoying my favorite season of all: fall! There are few things I love more than crisp air, those October-blue skies, and the sudden burst of flame-colored leaves falling to the ground.

in all the autumnal glory, i thought i'd give an update. Back in February, I shared with you all (the few people who actually read this blog) that I have rheumatoid arthritis. Getting diagnosed with RA, almost a year ago, was pretty harsh news. At 24 years old, I thought my life was over.

but then, another bomb dropped.


i have lupus. Before the numb fingers and toes, swollen achey joints, hair loss, fevers, and random rashes, I had absolutely no idea what lupus was. And now almost a year later, I feel like I've barely touched the surface of how deep this disease goes.

lupus is an autoimmune disease. It's not an STD, it's not contagious, and it's technically not going to kill me. Unlike some acquired diseases, lupus is essentially an overactive immune system. My body thinks that my tissues and organs are foreign bodies, and so it attacks them and damages them beyond repair. If anything, my immune system is an over-achiever in self-defense. A for effort, I guess.

my immune system cannot decipher between the good and bad. There's no difference between the flu, and my healthy working kidneys. To my immune system, my joints are the same as the common head cold. According to my body, my 20/20 vision is just as bad as strep throat. Every living bodily cell is bad when you have lupus.

the medications and doctors visits are endless. To date, I'm on 10 daily, maintenance medications. Twice a day. On average, I see three specialists a month (with the increased insurance copay). When I'm flaring up, you can usually throw in some Prednisone or steroid titration packs into the mix, just to get me over the hump. This doesn't include the vitamins, minerals, and other supplements I take. This last week I've been living with walking-pneumonia, bronchitis, and a sinus infection. That's 3 more medications I have to take, just to manage the annual seasonal yuck.

the planning is just as endless, too. I've had to learn to "plan for the unexpected". That fun day trip to the theme-park? Not gonna happen. The weeklong beach vacation with the boyfriend? I'll  be in bed half the time. That midterm? Hope I can make it up. Even just the process of daily living is too hard, sometimes.

you never know what you have until it's gone. Not just prolific lyrics or poetry lines.

after my chest x-rays and exams this week, I came home to my mom, who was eagerly awaiting what the doctors had to say. I turned the kettle on, pulled out some tea, and told her their prognosis.

and then i sobbed. I cried; hard, hot, intense, angry. I bawled. It was the kind of gasping cry; the kind that only comes out, deep down from the depths of your heart, from pure defeat and frustration.

"i can't remember the last time i wasn't sick," i told her. 

for the last year I've spent no more than 6 weeks without a flare up of my lupus, RA, or experiencing the common bug everyone's bound to catch. Yes, some of my flare ups are stress related. And yes, I can control some of my stress. But until you experience the stress you get from stressing about your illness, it's hard to give any sort of guidance or reprieve.

so don't tell me to relax and try to de-stress myself, because Lord knows I'm trying. Don't ask me about my protein. I can promise you I'm getting enough of it.Don't ask me if I'm taking my multi-vitamin, and insinuate that I'm under-nourishing myself.  Don't tell me it could be worse, when I am fully aware of the blessings I do have. And most importantly...

don't cry for me. I am the only one who gets to cry, because this is my life and my experience. . You can cry for me when I'm gone. I don't need tears. When I'm down in my deepest depths of pain, resentment, and frustration, the only thing I need is support.

so support me when i'm my at my worst. 

tell me i'm much stronger than i ever thought i could would be. Tell me I'm beautiful when my hair is falling out and I'm too weak to care for myself. Tell me some good news, when everything I've heard that day is everything less than bleak. Tell me I'm still mildly brilliant, when my lupus fog has clouded my brain so much that I can't articulate my thoughts and feelings.

tell me you love me, when I least deserve it. 

because your support and strength is the only thing i can count on. 

lupus research is in it's infancy. There are a few trials currently being conducted, in order to mange the disease. The key word is manage. The general consensus is that lupus is genetic; and being adopted only complicates the process. I'm open to any thoughts, ideas, or recommendations because... This is my life on the line. Again, lupus won't kill me. It'll probably be pneumonia, the flu, or something of the sort. But I'll be sticking around for the long term. Because as my mom once said...

"If you don't keep moving forward, then what's the point?"

a million thanks, and even more love. 



Sunday, February 28, 2016

RA and ABP.

my name is adrienne. and I have rheumatoid arthritis. 

over the last 8 months I've been struggling with constant pain in most of my joints. In hindsight, I've made the slow progression through levels of pain for the last 18 months, but the intensity peaked in August of 2015. The pain started in my pinkies in the fall/winter of 2014. At first I thought it was from constant txting (could be), and then I thought it was because of the constant cold (probably). The pain would come on early in the morning and late in the evening, so it wasn't enough to notice... in the beginning.

as the months progressed, and the weather warmed, my joint pain gradually increased. I was running around constantly with work, traveling with friends, and training for another half marathon. Again, I contributed the pinky pain to txting and being on the go. But then I started having pain in my toes. Somewhat naively, I thought I kept spraining my big toes in yoga (which I've totally done, multiple times). I thought my other toes ached from the 30-40mile training I was doing weekly. It didn't faze me for a while.

that was until the swelling set in. Towards the end of July and early part of August, my hands had ballooned. My finger pain had spread to all of my digitals, and the pain in my toes spread to my feet and ankles. But the swelling was the worst. My size 8.5 Asics were so tight that my circulation was being cut off. It too was painful to type on the key board. I couldn't wear any rings or watches. Opening jars and turning round door handles was almost impossible. Dicing and mincing veggies and herbs was out of the question. I broke 3 glasses in one week.

the pain, swelling, and inability to manage simple daily tasks wasn't what brought me into the doctor's office. It was my asthma. I was diagnosed with asthma when I was 14; up until that point I had had 5 years of controlled asthma under my belt, with the latter 2 living without the need for a daily corticosteroidal inhaler. All of a sudden, though, I couldn't breath. I was waking myself up wheezing and coughing every night, and couldn't run a half mile without needing my rescue inhaler. So straight to the pulmonologist I went. After explaining my breathing issues, and the physical exam, my physician asked me if I had any other aches and pains that needed to be addressed. I told him about my joint pain and swelling, and he ordered some blood work. Thank goodness he did.

about 5 days later, my doctor calls. He said my rheumatoid factor was double what it should be... for a 50 year old. He sent off my labs to my GP, who referred me to a rheumatologist.

after seeing the rheumatologist, and doing more blood work and x-rays, I finally had a concrete diagnosis. Rheumatoid Arthritis (RA for short). As soon as I was diagnosed, I was immediately started on RA protocol.

having a tangible, albeit unexpected, diagnosis to my months pain made me feel exponentially better. But I'd be lying to say I'm alright.

it sucks. It really sucks. Having RA at 25 years old, is almost soul crushing. I haven't been able to do so many of the things I love to do: run, bike, practice yoga, knit, ski, blog. These things that I love, my favorite things, make up so much of who I am. Not being able to do them has made me feel like I've lost so much of my identity. All because of this disease. I never know how I will feel, day to day. On my best days, I have deep but dampened pain in my fingers and toes. On my worst days, getting out of bed is too much.

seeing the glass half full is a constant struggle. RA is not a death sentence; it is not cancer, it is not paralyzing, it is not world-ending but... Being optimistic sometimes feels impossible. I'm my toughest critic and my biggest hater, so staying positive is a constant battle between my self, my reality, and acknowledging any silver lining.

the struggle has been real.

but there are so many things to be grateful and thankful for. 

first, my friends. They have let me whine, cry, scream, and yell my frustrations about my situation and diagnosis way past being blue in the face. They have called me from Florida, txted me from Chicago, wrote me from New Jersey, and visited me from down the street. They've made the time and effort to reach out and make sure I'm okay. I've said it before, but I have the best friends in the world. And for that, I'm thankful.

second, my coworkers. When you work in the medical field, your job is to take care of your patients. Never did I expect to be taken care of by my coworkers. Every day the techs, nurses, clinicians, and physicians check in on me to see how I'm doing. They always ask how I'm feeling, if I need help, and how they can help. If I can't lift a patient on my own, they're always there to help bear the weight. If I'm exhausted and feeling down, they're always there with a cup of tea and encouraging words. Having such a loving and caring work family makes all the difference when you're aching to the core. And for that, I'm grateful. 

third, and most importantly, my family. The amount of work my parents have put in to finding answers, accommodating, and encouraging me is insurmountable. They help in any and all ways they can; driving me to doctors appointments, making my bed in the morning, packing lunches, bringing me water to take my meds, giving me a little bit of extra love when I need it. Being a parent is the hardest job in the entire world, so the fact that they have gone over and beyond their basic duties is something I will forever be indebted to them for. And for that, I'm thankful.

the last year has been one of the hardest of my life. It has been full of pain, frustration, and questioning. It's bent my faith, and dulled my self-esteem.

but it hasn't broken me. I am far from broken.

my experience with rheumatoid arthritis has changed me. 

rheumatoid arthritis has made me patient.

rheumatoid arthritis has made me resilient.

rheumatoid arthritis has made me stronger than I ever could have been. 

and for that, I'm grateful. 



Friday, January 1, 2016

january run+workout.

january run+workout playlist; 1 hour, 28 minutes.

happy new year everyone!

after a few months of not being able to do much of anything besides work and rest, I'm finally back at it.

and as so many of us commit to a "new year, new me" i thought I'd start off the resolutions right...

with the very first run+workout playlist of 2016!

as always, there's a little bit of everything for everyone. Hope you enjoy!

  1. cake by the ocean, DNCE
  2. flux, Bloc Party
  3. power, Kanye West
  4. you, Galantis
  5. as long as you love me, Justin Bieber
  6. something big, Shawn Mendes
  7. me & my girls, Fifth Harmony
  8. something in the way you move, Ellie Goulding
  9. send it up, Kanye West
  10. sorry, Justin Bieber
  11. tied up, Casey Veggies
  12. try me, Jason Derulo
  13. transmission, Zedd
  14. love you right, Matoma
  15. a sky full of stars, Coldplay
  16. levels, Nick Jonas
  17. roses, The Chainsmokers
  18. same old love, Selena Gomez
  19. love myself, Hailee Seinfeld
  20. the fix, Nelly
  21. waiting for you, Demi Lovato
  22. magnets, Disclosure
  23. pay my rent, DNCE
  24. keep on dancin', Ellie Goulding
  25. 679, Fetty Wap