Loukisha's Story
12 minuten ·
Happy Monday everyone! Thanks, for coming back for Monday’s Ruconest Infusion. I was struggling physically today with pain, and that ushered in very slight facial swelling. Ugh! Dealing with triggers that can cause swelling is frustrating to say the least. Physical pain is a huge trigger for swells, as is extreme temperatures (too hot or too cold), fluctuations in barometric pressure (I’m pretty accurate at detecting rain), stress, trauma, surgery, being ill (colds, flu,etc). Oh, my personal favorite, just swelling for the heck of it which is irritating as well as dangerous. Since almost all HAE swells for me manifest in my face, lips, tongue, and airway the Ruconest, prophylactic infusions are truly life-saving. When I lived in the “dark ages” (HAE without acute or prophylactic medications) the ventilator and/or tracheostomy were my only hope of survival. There are days when I need to shift or cancel plans, because of HAE. However I’m so glad there are amazing HAE medications like Ruconest, Firazyr, Berinert (just to name a few) that can and has saved my life. So Monday’s infusion is dedicated to celebrating the little things in life. My children and I just piled in bed and they told me about their day while I infused. It is hard to find many things more life affirming than that. You know how much I love to hear from you all! Do you have special routine for your infusion schedule? How do you cope with low energy days? I look forward to your responses. Just remember,everyone has a story to tell, don’t be afraid to share yours
the Ruconest, prophylactic infusions are truly life-saving.