Today we said our final goodbyes to Maeve's great uncle, Paul (on the right). This photo was taken on Christmas Day 2016. I remember wondering if it would be the last Christmas we had with both Maeve and Paul, but we were incredibly lucky that it wasn't. I know we can never really have enough time with our loved ones, but it seems all the more cruel when they are taken so young, like with Maeve and Paul. This photo was played during the slideshow at the funeral today, and seeing my sweet girl up on the screen gave me a smile and a tear. I miss her more than ever.
I accomplished absolutely nothing this weekend. I’ll be impressed with myself if I get a load of laundry done. My meals have been on track, at least. I did go out for dinner the last two nights but I planned accordingly.
I have been thinking about going keto. My son has a brain tumor and experiences partial and grand mal seizures. I’ve read the keto diet was actually created for epilepsy. I’m curious if it might help decrease his seizures. He seems overwhelmed by the thought of it, but I told him if his neurologist gives the green light I would do it with him. I’ve been working in low carb recipes for dinner to see if they even notice. Tonight it was garlic lime chicken thighs with buttered dill carrots and cauliflower rice. They cleaned their plates.
Had a seizure at work last night, got out of the ER within 3 hours or so. Blood work was good but my EKG was still weird. Going back to the heart and vascular center on Tuesday to see if I have POTS.
Had a nasty headache and nausea this morning but I'm feeling a lot better now! My ER doctor, nurse and tech and all the paramedics and my co-workers were AWESOME. #pots#dysautonomia#spoonie#migraine#seizures#hospital#erselfie#snapchat#goodvibes
I haven’t really posted about my Epilepsy for a while and I don’t really have anything new to say tbh - still getting seizures nearly every day (shitter), memory is pretty much still non existent (pretty crap), feel like a kid with a bed time most nights to try and prevent seizures (not working). So yer, got an appointment with my Neuro on 30th so hopefully will get this rubbish sorted. Maybe it’s time for another EEG 🤷🏻♀️ or all night one. I don’t know.
I try to stay positive but it’s been hard recently with having them every day! I’m beyond exhausted mentally and physically.
So, here’s some of my favourite, funny yet so true quotes.
Each year, Lemonade for Livy brings people together from around the country and the world. Our common purpose is to support the epilepsy community and to find a cure! As with any family who struggles with seizures, we feel we have no control over this invisible disease. We are always on edge and constantly vigilant for when the next seizure will occur. Our nerves are frayed when Livy has a bad day. And on the good days, we wonder how long it will last. There is never any peace.
#Lemonadeforlivy is one way we have found to take back control. It is our way of saying, "Epilepsy, you will not beat us. We will keep fighting you each and every day!" Since the beginning, it has been about helping others. That goal continues to this day. Livy has always inspired us to do more. We know that there are many people who share our journey. We have always relied on finding more people to get involved and to spread the message that we must make a stand against epilepsy!
So we ask you, please get involved. Go to epilepsy.com/lemonadeforlivy and register to be part of the campaign. You can hold a lemonade stand, party, or event. It can be big or small. It can be at your home, in front of a business, or where you work. It can even be a virtual lemonade stand. Regardless of your age, you can join us. Please help the Epilepsy Foundation of America and Livy's Hope turn every state in the US purple. If you live outside the US, please help us turn your country purple. The Epilepsy Foundation has funded research projects all over the world and will continue to do so.
Even if you are not directly affected by #seizures , you likely know a family who is. 1 in 26 people will develop #epilepsy . Do you know 26 people? We all need to work together so we can improve the lives of the 65 million people around the world and their families who, like us, are impacted by epilepsy.