Story
Friday, May 30, I was admitted to the hospital with symptoms of a stroke. While the symptoms were consistent, testing wasn’t showing anything they could diagnose yet. We know it is neuromuscular. However, as I don’t ever fall into the easy-peasy category, I’ll be following up at UW to get more specialized care. During my time in the hospital, I went from diminished sensation and weakness on the right side of my body, to twitching, drooping mouth, cognitive issues, and then very suddenly, losing my voice entirely and losing the ability to walk independently. There is nothing quite like waking up and finding out you can’t talk or walk. And you have no idea why. Even with the tests, the specialists, the hospitalist, the PT, the speech pathologist, and outside consults … we don’t know what is wrong. And since I have no definitive diagnosis, I don’t have a prognosis. So — I could be walking with my trusty walker for a an unknown amount of time. My family and close friends have rallied around me to visit me, encourage me, drive my kids to school, take them to appointments, help with laundry, cook them food, clean my house for the last 5 days. Because my parents’ home is handicap accessible, I’ve temporarily moved into their home. Naturally I miss my kids and they miss me — but with all the stairs, dog, and kid’s things, staying at my home is not the best. Ryan is doing everything he can to arrange for his work, make our home more accessible for me, and just generally take over as the main caregiver in our home. I want to shout out to my mom who has done so much for me and my kids. My parents have given up even their own bedroom so I can have a safe space. And helped as well to care for my family. I had a few very special nurses, therapists, techs and transporters who were helping me. June 3, I was discharged. I don’t know what’s wrong. I don’t know when I’ll get better, if I’ll get better, or how much better I can get. Even still, I recognize the incredible amount of love, support, care, and privilege I have. And that has made all the difference. Thank you for any support or encouragement for me, Ryan, or my kids at this time.
Special Notes
My family is admittedly not the easiest to cook for. Here are a few guidelines that could be helpful … — due to some of the sensory aversions of my kids, things that are easiest for them are things they can put together themselves to accommodate for their own preferences. Foods such as tacos, burrito bowls, pasta with the sauce on the side, or salad or sandwich fixings. Asian food is almost always a yes for them. They also all like canned green beans, raw fruits, and raw vegetables. They love rice and bread. And most meats work for them. Things that are harder are casseroles — as one child refuses cheese, sauce or dressing — and one struggles with the texture of cooked vegetables. They also do not like seafood. - At this time, meals will be for the kids (3 people) only until I move back home. Then they will be for 1 adult and 3 kids. After I move home, I will still be very limited in the care I can provide my kids, so all support is very much appreciated. Ryan will be preparing his own meals as his diet is very restricted. But even providing just for the kids will still make things so much easier for him as well. If you have any questions on what to fix, you are welcome to text me at 360-689-6760.