Sunday was International Day of Persons with Disabilities and like so many things in my life right now, I had the best intentions of putting together something meaningful to share on social media about my own experience.  The thing is, I’m exhausted. Which — in a way — feels fitting. Dealing with a complex medical condition that on my worst days leaves me unable to use my body, managing the appointments alone is a full time job. Add in the advocacy that is needed to navigate the healthcare system, what I’ve been pushed into this last year is without a doubt the hardest job I’ve ever tak ..read more

On Tuesday morning, hours before I was readmitted to the hospital, I met with my rheumatology team in-person and had one of those conversations you hope you never find yourself in. For some reason, my body has not been responding to the treatments the way my care team hoped. All of those treatments we did during my first 10 days in the hospital. And while we try to figure out why, it’s also important that we keep throwing whatever treatment options we have left at my Dermatomyositis to try and mitigate the damage, in the meantime. That treatment is called cyclophosphamide. It’s a chemo drug t ..read more

Sunrise Wednesday morning from my hospital room My time at home was short lived. On Tuesday after meeting with my rheumatology team, it was decided that the best path forward was to readmit me to HCMC. The hospital was full so we had to wait for a room to open up and we got the call late in the afternoon that my room would be ready that night. Long story short, my body isn’t responding to treatment the way it should be and that likely means there’s something we don’t know. So before we can plan out what’s next, we have to get as much information as possible. When I was released from the hospi ..read more

It’s almost 10pm and I sat here for a really long time trying to come up with a clever title for this post. John made me my favorite breakfast at home and brought it over early this morning. Long story short, my hospital stay has been extended until at least Monday, September 11th. After receiving the news, my mom and I jokingly dubbed the hospital the Hilton Club Med Continental and I’m downright terrified to take a look at my room tab right now. If only I were ringing up credit cards charges on Miami Vices… someday soon, I hope. But for now, I’m where I need to be. My poor body. It has stop ..read more

I was so optimistic when I hit publish yesterday morning. My CK levels were trending down, a release date was finally being talked about and attending The Myositis Association’s International Annual Patient Conference seemed like it was happening. Then the bloodwork came in and that plan went out the window. Ironically enough, the lab was backed up so my results didn’t come in until after my rheumatologist and I had spent 30 minutes talking about the hypothetical plan based solely on good news. Rookie move, Lindsay. Once it was clear my body was still very much confused as to what it was suppo ..read more

Saturday morning after being admitted from the ER to my room. The fanny pack makes hospital life so much easier. I didn’t expect to spend my entire Labor Day Weekend in the hospital but here we are. Trying to lie still through my two hour MRI yesterday, I had this epiphany. There's a reason why the majority of the CaringBridge pages I read are written by family and friends and not the actual patient. This shit is exhausting. Says the woman about to spend her fourth night in the hospital. Hello from HCMC in downtown Minneapolis, the place I’ve called home since Friday night at about 11pm. It’s ..read more

“You’re a worm with a mustache!” James Kennedy coming in hot with the line of the century in the trailer Bravo has been playing as the lead up to the three-part Vanderpump Rules reunion special. Night one kicks off Wednesday, May 24th and I put together a few party ideas that works whether you’re getting together with your favorite Bravoholics or snuggling up in your favorite pajama set — ala Lala Kent — on your couch at home. The Pumptini Check out the full recipe here. You can’t have a Vanderpump-themed party without including the Pumptini. It’s a freaking staple! Raspberries, lime juice, vo ..read more

I had illusions of grandeur that I would be keeping a very up-to-date rundown of everything that’s been going on over the last few months and that was very optimistic, considering washing my hair is now a luxury. Whoops. Taking you back to where we left off — on March 20th, I had my first round of Rituxan. On April 3rd, I went back for the second. It’s now April 25th. Let the party recommence. One day there will be good news to share here. Unfortunately, today just isn’t going to be that day.  My doctor called this morning and the consensus is that the Rituxan treatment didn’t work. At l ..read more

Refocused is and will always be a place where we welcome everyone and one of the goals we established early on was making sure we are sharing the stories of the entire ADHD community. That has and will always include those in the transgender community. March 31st is Transgender Day of Visibility and the unfortunate reality is, it is more important than ever that we stand up — not only in support of our transgender friends but also speaking up against those who are trying put parameters on their place in this world. Here are a handful of tips for allies of transgender people, compiled by GLAAD ..read more

Well, my first Rituxan treatment is in the books and my body seems to be handling it like a champ. It ended up taking about six hours for the infusion therapy and I’ll go back in two weeks for my second treatment. And my medical team is hopeful I will start to see results one month after we wrap treatment, so about six weeks from now. I did start to feel pretty run down last night around 8pm and so I’m taking it as easy as possible for the next couple of weeks. My formal diagnosis right now is still up in the air. I’m learning that with autoimmune diseases, things can and will likely change t ..read more