Skip to content

A Lovely Lupus Life

Finding The New Normal After A Chronic Illness Diagnosis

Home
About
Lupus
Support Groups
Contact

Tag: depression

Hello, From My Dark Place

September 23, 2018September 24, 2018 jaharris91

My struggle with depression in the midst of a life changing due to lupus

Tagged autoimmune disease, chronic illness, coping, depression, systemic lupus erythematosus2 Comments

Connect With Me On Social Media

Pinterest
Instagram
Facebook
Twitter

Instagram

This is what chronic illness looks like... Yes - I’m smiling and I look “fine”, but I’m also exhausted (even though I haven’t done much today), my stomach is insanely inflamed, I’m only awake at the moment because my joints are KILLING me, and I just took a mouth full of medication (my evening pills). Could you tell that by looking at this picture though??? . . Lupus looks like: - Exhaustion that the normal person can’t even begin to fathom - Staying in bed all day because the fatigue and/or pain is so bad, you can’t function - An obnoxious number of specialists and medical tests - Pain that is, at times, unbearable - For some, effects on any/all major organs Lupus is also: - Smiling through the pain - Getting up, putting your makeup on, and venturing out into the world - Laughing with friends when you can - Choosing to live as full a life as possible and embracing the good moments

Almost a year ago I moved from Maryland to Virginia. Being that I had been living in Maryland from the time I was diagnosed (and having had access to top quality doctors through Hopkins and many other brilliant minds in Maryland’s more metropolitan areas), I had NO IDEA what I was undertaking just from a health standpoint. Between finding all new doctors, doing my best to make it a smooth transition with treatments, and everything else that comes with a big move and starting a whole new job, it’s safe to say that I have spent the last year in a state of physical and emotional exhaustion to put it mildly. It’s been so exhausting, I still haven’t figured out how to put it into words. . I have yelled at more doctors than I care to own up to and woke up about 2 months ago and decided to get rid of all my specialists and start the hunt for ALL new doctors (with the exception of my cardiologist who is the most amazing human being). . It hasn’t been all bad and I certainly don’t regret the move for a minute. Looking at this list of triggers (that is by no means all inclusive), just reminded me of all the flare triggers I’ve experienced just in this past year. But above all, it reminded me how - even under immense stress and pressure - I have stayed present and listened to my body, rested when I needed to, and did not allow myself to get defeated. Which, if you know my journey you know, is huge for me. . We all experience periods in our chronic illness journeys that what we are facing seems insurmountable. Stay present. Stay steadfast. Find joy where you can.

Hey y’all! 👋🏽 It’s been a while since I’ve posted on here and for that I apologize. It has been a hectic year of transition to say the absolute least! I plan on sharing all about that in the near future, but for now I just wanted to check in. How are y’all doing? How are you managing your lupus through the craziness that is the impending holiday season?! 🤪 Catch me up!! I’ve missed this platform and interacting with this support system here!

This was taken 2 weeks ago at my last #benlysta infusion before moving to Virginia. I have since started a new job, in a new state and am in the process of switching to new health insurance. I’d like to say that transitioning my medical care was smooth and easy, but I’d be a liar. It has been a complicated cluster fuck and still is a complicated cluster fuck to say the very least. I have had a doctors scheduling staff basically tell me that they don’t care if I end up in the hospital because of missing TWO infusions (they claim they can’t get me in until March). Then when I finally get ahold of an actual doctor and he puts in a referral to get my infusions before I see him, I have to jump through hoops with the infusion center with the new insurance and benlysta gateway. Basically - I’m still waiting to schedule an infusion that I’m due for in less than 2 weeks because of administrative bullshit and it’s infuriating! I feel like I spend all day arguing on the phone with people about a medical treatment that I NEED to sustain! Anybody have any suggestions for dealing with asshole medical professionals?!

2018 was a tough year, but we made it through! For me there was a lot of frustration in my health and home life, battling depression, and what felt like a lot of people around me in very poor health. All that being said there were some beautiful moments with amazing friends/family...lots of laughter and love. As we roll into 2019 I’m feeling pretty good about the year ahead. This is going to be a year of a lot change for me - starting with a move to a new state in 3 days and leaving a job that I’ve loved for the last 6+ years, but I’m excited! So let the year of adventures begin!!! Wishing you all good health, love and everything you desire in the year ahead!! Happy New Year! 🥂❤️

Other Places To Find Me On The Web

Contributor on The Mighty

Recent Posts

Hello, From My Dark Place
A Conversation About Lupus
9 Tips For Surviving Life With Lupus
What I Really Mean When I Say I’m Fine
A Link Between Trauma and Lupus?
Sorry, Not Sorry

Archives

Archives

DISCLAIMER

All views expressed on this website and associated social media accounts are my own and do not represent the opinions of any other entities. The information presented on this website and associated social media accounts is not intended as professional medical advice and therefore, all responsibility is taken at your own discretion and risk.

Powered by WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy