The kids are both doing pretty well. Lauren had surgery in December on her airway (lingual tonsils) and while she was sedated GI did an EGD with biopsies. Recovery was 10 days of absolute hell that I thought would never end. But it did! And praise God, she is now sleeping through the night 90% of the time!!! I had eye surgery (cosmetic) right before Christmas and couldn't see for over a week. Ryan broke his arm a couple days before Christmas and is following with orthopedic surgery to make sure he heals well because the fracture was on a growth plate. Ryan is basically amazing (I think we've had one case of strep with accompanying PANDAS flare since November). And Greg is a champ and still working midnights 6-7 days a week. We are trying out a new church and have joined a small group. Ryan LOVES it and while they don't have special needs programming, Lauren seems to enjoy it and they keep her safe and happy. I think it helps both kids that they're in the same classroom and we have family working there as well, so there are familiar faces. I've enjoyed a wonderful break from school, but start up again next week. God willing, I should graduate in June! Lauren's behavior has been pretty good! She certainly has her days where I wonder where I've gone wrong as a parent but overall she's doing well. We're working on some issues like taking things from classmates, but I think it's getting better.
POTS is kicking my butt. I haven't had a symptom-free day since October. I am pretty miserable most of the time. Today was actually the best day I've had in a long time and on a scale of 1-10 (1 being no symptoms and 10 being all the symptoms) and I'd give it a 5. I'm dizzy at least a few times throughout the day pretty much every day. Nausea and fatigue are my worst symptoms. I'm trying so hard not to lose any more weight but it's so difficult because I can't make myself eat while I'm so nauseous. There have been days where I know I'm not taking in any more than 1000 calories and my heart rate is high, I'm working, and I know I'm burning more than that. Today I ate two full meals (breakfast, snacks, lunch, and another snack) and it counts as a win! Finding calorie dense foods that are gluten free, dairy free, and high in protein (carbs make my pots symptoms worse) is kind of tricky. I drink plain, unflavored Propel water and try to get in a Gatorade a day to get enough sodium.
I started seeing my therapist again to help me to cope with the havoc chronic illness is wreaking on my life. She's encouraging me to be more open about my struggles. When people ask how I'm feeling I tend to say it's fine, I'm okay, etc because I hate to sound like I'm complaining. My poor work besties get the worst of me because they get all of my honestly and whining. I really rarely tell people how I'm actually feeling, mostly because I feel usually "How are you?" or "How have you been feeling?" are polite questions and I hate to sound like a complainer. And obviously, Greg is a saint because he gets whatever is left after I've doled out all mental energy to everything else in my life. Sometimes the fatigue makes me feel like I'm trying to swim through jello just to complete each day.
This is hard. I feel like I can't be the mom I want to be because I am exhausted all the time. The fatigue I experience daily goes well beyond being tired. I'd kill for tired. Sleep fixes tired. Sleep does not fix fatigue. By the time I get home from work I don't have the mental or physical energy for dinner, homework, playing, snuggles, and kindness. I try so, so hard and I hope my kids have happy memories of me. I can't be the wife I want to be because I can barely stay awake later than the kids (and often don't) so we don't spend near as much time together as we'd like. We've been trying to finish the last episode of a show on Hulu for a solid week! My coworkers are amazing and so patient with me. I'm kind of a crappy friend right now but I'm doing the best I can. I hate to feel like I'm complaining or pitying myself because I know there are plenty of people who have a harder time than I do, but knowing that doesn't make my life any easier, if that makes sense. But we're making it work one day at a time.
