I’m so excited to have been chosen to be the Adult Honoree for the 2019 Walk to Cure Arthritis! Click the link in my bio to read my story, donate towards my fundraising goal or to join me at the walk on May 4th! 💚#WTCAHou #RAWarrior #ChampionOfYes
Round 2 of Actemra. According to my infusion nurse, this is the one where a lot of patients start to notice a difference. 🙏🏼💚 #RAWarrior
I have to sit in a room and wait for people. This is what I have chosen to do with my time. #RAproblems
2018, as hard as you were, I wouldn’t take back one second. Physically, one of the most difficult years of my life. At the same time, there was so much happiness, growth and success. Looking forward to what 2019 has in store! #TopNine
Feeling the CHRISTMAS SPIRIT! With this yummy cup of sweet hot chocolate (that I should definitely not be having 😜#RAproblems
Semi-announcement time.... I was asked to be the Adult Honoree for the 2019 Walk to Cure Arthritis!!! More details to come, but I’m honored to represent my fellow adults living with this disease. Everyone save the date- May 4th! I had so much fun at the committee holiday party tonight, even though we were missing most of the group. Looking forward to a great year!
Since so many people have asked, I figured I owe you guys a health update. Ever since Cadence was born, the Remicade that worked for me for over 10 years, stopped working. Over the last year I’ve been taking steroids every day in addition to the Remicade treatments, and we increased to the highest allowable dosages, but it still wasn’t enough. I started a new medication called Actemra last Friday. It isn’t good to be on steroids for a prolonged period of time, so the goal in trying this new medicine is to be able to stop taking them. So far, I haven’t noticed any difference at all. From what I’ve read it can take anywhere from 2-12 weeks to notice the effects of the medication, so I’m still hopeful. I can’t tell you how much it means to me that so many of you care about my health and pray for me. The love and support from this peanut, her daddy, our family and all of you is the best medicine, so thank you. 🙏🏼❤️ #RAWarrior
All I want for Christmas is for this new medication to stop my RA in its tracks! #RAWarrior
In true #AutoimmuneDiseaseProblems
form, I’m honoring the 7 year anniversary of my formal #RheumatoidArthritis
diagnosis (after ~3 years of symptoms) by beginning a new treatment regimen. In the last decade, my body has mistakenly attacked my thyroid, my lungs, my GI tract, my gallbladder, my skin, my scalp, my eyes, and my joints, of course. After having a whopping dozen other treatment regimens fail to adequately tame my furiously confused immune system, I’m really hoping that this will be lucky number 13 🤞🏻🤞🏻 Anyone have experience with #Xeljanz
you can share? It’s a relatively new drug, and I recall a bit of controversy prior to the FDA approving it. I’m not usually this nervous about new meds, but my body has been misbehaving unpredictably lately, so I’m being more cautious than usual. #FingersCrossed
! #LifestylesOfTheChronicallyIllAndFabulous #MyConnectiveTissuesHaveIssues #RA #RAproblems #RheumatoidDisease #MixedConnectiveTissueDisease #MCTD #AutoimmuneDisease #BodyIsBrokenButMySoulIsGolden #MCAS #MCAD #MyImmuneSystemHatesMe
Last week, I stayed up past bedtime to join two other mommies and talk about being a mom with RA on the Mommy’s Juice Box Podcast. I promise, it’s not a sob-fest. In fact, they start every episode with a “Did you want to kill your husband this week?” segment. 😂 Spoiler alert- I did want to kill him. My episode was called Warrior Princess Momma, but check out their other episodes as well and subscribe!
Mal and Melisa, thank you for having me on, I had a blast! #RAWarrior #MommysJuiceBox
This Friday’s cocktail hour came early!
These treatments are never fun, but I have a smile on my face anyway because this medicine will get me through another 6 weeks of living with this disease. Can’t stop fighting! #RAwarrior
Shout-out to the caregivers. I’m so lucky to have a strong group of family and friends to support me when I need it. But this guy, he sees it all.
From 10 days postpartum when I woke up with the most unbearable pain I’ve ever experienced, to calming me when I’m not seeing reason, to going in to work late on mornings when I can’t get myself or Cadence ready, to reminding me how strong I can be on days when I don’t even want to get out of bed. Caregivers take on the disease by choice, and I can’t thank him enough. #WorldArthritisDay #RAWarrior
My RA is really taking a toll on me this year, so I invested on some ergonomic hooks and compression arthritis gloves. The hooks are amazing. Trying the gloves out for the first time tonight, but just putting them on relieved some of the ache #raproblems #ra #ifthisismythirtiesimscaredofoldage
RA is a weird disease. Some days, I can barely get out of bed. Others, I can kick butt on a paintball field. Every day is a different battle, but I’m proud to be a fighter. #RAWarrior
We’re going to talk about my toe for a bit, (swipe if you dare) and some of the weird unexplainable things that can come with RA/chronic illness. So my toes have bothered me incessantly the last two years, the nails will go months without growing, the pain is awful, I take very good care of them and put spacers in them to help realign the bones every now and then. For over a month though, one on my right foot has been hugely swollen, turned purple for a few weeks, and the pain was unbearable. I kept doing nerve blocks with ice. I held off for my rheumy appt where he tried to drain it, expecting pus, but it was full of blood and under a ton of pressure, he wanted to remove the nail and hopped over to my podiatrist who wasn’t in that day, so I still have the nail. We did a round of cephalexin and then he referred me to follow up with my podiatrist across the hall, who today said that part of my condition and meds just means that things will take so much longer to heal and to not put it off in the future.
All week I have been planning to take care of myself... I was running on fumes. Last night I started to experience the worst #raflare
since starting humira. Literally EVERYTHING hurts. Stuck in bed today...I usually push through but, today I've been sat down literally... #raproblems #rasucks
Who says you can’t have a cocktail while getting some work done? 😂 Happy Thursday, everyone!
Infusion day! This is my last one on schedule and then I have them spaced out just a tiny bit more trying to align them more with my husbands work schedule because they’ve been lined up in a way that he cannot take me so it has been a pain trying to get here. Being independent and then having to rely on someone to take a whole afternoon every two or four weeks to cart you to an appointment is a huge adjustment and actually really hard to do. Hopefully this will be the last oddly scheduled appt. in other news, my beloved twelve month old meticulously kept @chihaircare
dryer is kaput after developing a ball of fire inside the barrel much like the throat of Smaug before vanquishing an intruder after his treasure.
Today, I wore makeup and went out for the first time in a week, and I felt SO pretty and it felt so weird every time I saw myself, and tonight when I took it off, I still felt pretty, which I think can sometimes be a hard to reach place when you are constantly battling yourself each day, and it can be easy to forget that behind the pain and the schedules and meds, you’re still you, whether you are covering it up to appear “normal” or not(whether it’s concealer or a brace or special socks or sleeves for your many sticks, whatever), you are beautiful, you are worthy, you are irreplaceable. This is your reminder, from me to you. 💙
I’ve been a little MIA lately. I’ve been taking advantage of these quieter days, (and staying out of the heat!) spending them writing grants and working on the launch of something BIG for ENC, the culmination of one of my big dreams from my top three plan last year. I DID get taken out by my lovely hubs for a movie 🎥 , gelato 🍨, and a starlit walk on AB last night though which was so nice. I keep running little fevers the past month, annoying, uncomfortable, but I’m working through it, hoping it’s a phase that will wear off because otherwise I am doing fine on the Orencia thus far. I had some reservations about sharing my persistent fevers the last few weeks; at nationals there were concerns over my abilities to represent & commit with my condition, and that makes me really sad, but if you are a follower then you would know to never question my ability or commitment to my work and my cause, and sharing every step of the way, good and bad, has been a huge part of building my story and platform. Yes, I have a chronic illness. No, it does not define me, nor will I allow it to limit what I plan to accomplish on this path. Reviresco, I grow strong again. 🌱