My Rituxan infusion, what happens, and making the best out of it.

At the hospital 🏥 getting my 6 hour infusion of Rituxan. Today is a long day we got to the hospital at 8. My infusion only started at 9. Now I have 6 hours to go. Luckily I’m here with my mom, Cheryl. We keep each other company during our treatments. And of course we’re wearing purple to show our support and awareness for #lupus and #lupusawareness 💜🦋🎗

This is what happens during my infusion. An overwhelming point of exhaustion that you can’t even fight. You have to listen to your body. 💜🦋🎗#lupus #lupusawareness

Because of resting I was able to go and visit the koi fish and turtle pond. If you all know me I am literally OBSESSED with koi fish. There were two highlights: 1. My absolute favorite fish in the whole pond jumping out of the water and 2. The turtles stacked up in a cute little line.

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May 10th is World Lupus Day

May 10th is officially world Lupus day!!! Usually on world Lupus day I ask people to wear purple. However, I understand this is a little late. So, if you can wear purple this weekend or even some time this month myself and every other Lupus warrior would appreciate it. You can even take a picture and tag me in it to show your support!! #lupus #lupusawareness #worldlupusday 💜🦋🎗

A look into the life of a Lupus warrior

Hey everyone, I’m welcoming you in to the life in a day of a Lupus warrior. My day starts off with a total of 11 pills and 1 liquid medicine. The next time for pills is in the mid afternoon where I take 2 pills. Later on in the early evening I take another liquid medicine. And finally before bed I finish the day with 6 pills. If you tally everything up that’s 19 pills 💊 daily and 2 liquid medicines daily + a chemotherapy shot weekly and 2 infusions every 5 months. I know not everyone agrees with medicines especially chemotherapy medicines. But I would like everyone to know some of us don’t have a choice. When Lupus is affecting multiple organs like it has with me (including heart, lungs, central nervous system and more) I need these to help me function and more importantly, I need them to keep me alive. Many times some of these meds (plus some hard work on my end like physical therapy for a year) have gotten me through many hard times such as waking up one day and not being able to walk from Lupus attacking my Central Nervous System. The meds have also kept me from not being paralyzed but rather while instead only being unable to walk for 9 months. In addition, I would have died without some of these meds because of complications from Lupus a couple years ago. So, I take my medicine because I want to live my life to the best of my ability. #lupus #lupusawareness 💜🦋🎗

Fatigue and energy levels

Fatigue is the most common symptom of Lupus. Your energy level in the Lupus world is referred to as spoons 🥄 🥄🥄 and the spoon theory. We need to listen to our body when it is telling us to take it easy and we are running low on spoons. If we over exert ourselves we dip into our reserve energy or reserve spoons this can only make other symptoms worse. #lupus #lupusawareness #spoontheory #spoonies 💜🦋🎗

Things you should know about me, about Lupus

Ask anyone. The number one thing that is important when dealing with lupus or any other chronic illness is a positive attitude. But let’s get real for a moment. We all have bad days. And we all question “why” sometimes. As someone with Lupus, here are some things I want you to know. Please take the time to read them and know through my positive attitude and outlook on life I am still human, a human battling a disease that you cannot see but is ever so real. #lupus #lupusawarenessmonth 💜🦋🎗

Lupus fog…What is it? How can I manage it?

A common symptom among people with Lupus is something called Lupus fog 🌫 which affects your brain and memory 🧠. The #1 thing to help with Lupus fog is to write things down. 📝Write down as much as possible as soon as possible. Keeping a notepad handy🗒, keeping a calendar 📅will keep you organized, and use alarms and alerts ⏰ to remember things like taking medicines💊. #lupus #lupusawareness 💜🦋🎗