In a Not So Neat Little Bow

 

Well the year is coming to a close and it feels like my life is a complete disaster zone. The week before Christmas and part of finals week I was sick with a nasty cold. No big deal right, take and Advil cold and sinus and get on with it…not. That hardly touched it and of course it brought on migraine. That was a no -so- fun study buddy during finals. But I made it out alive and with good grades to boot (besides missing 5 days of school 2 weeks earlier).

The cold stuck though. I got pretty much nothing done for the next week. But, I felt pretty good on Christmas Eve and Christmas. Just sniffly and headachy a touch, the cold was nearing the end of its run. Yay! I had a lovely evening at my grandma’s on Christmas eve and we did dinner and presents and everything. The next day at my aunt’s I had dinner with my mom’s side of the family and while I didn’t eat a ton it was delicious as always. Overall, it was a good Christmas and I got to spend it with the people I love and enjoy the wonderful holiday relaxing and having  good time. The next day though I woke up feeling not quite right, my GI symptoms were flaring (bloating, cramping, pain) and a blanket of nausea covered me the entire day. I got some things I needed to get accomplished done and decided to nap the rest of the day on and off. I ate a small bowl of macaroni and cheese and had a glass of milk around 3 after taking a promethazine and was starting to feeling better. I watched a bit of the latest Resident Evil that evening, decided it was a little to well-made for me, and instead fell asleep watching the Lego Batman Movie around 10:30pm. I was asleep for only an hour went I sat straight up and knew immediately that the nausea was going to take it to the next level. Luckily I had just put a new bag in my trash.

Ahhh, yes the joy of spending half the night on the bathroom floor, slouched against the wall, tear stained checks, surrounded by waded up toilet paper. No this isn’t a break up cry-fest. It’s the reality of having GI disorders(or in my case being an undiagnosed mess lol). It’s not being able to take your daily pills because you know they will come right back up. It’s losing so much weight in a week your family takes notices and starts to worry more than they already have been about your declining weight. It’s waking up every few hours like I was doing the day after Christmas and having your body try to empty its stomach yet again, even though there is nothing left. And having the next week, even now, follow quite similarly; a flare. I haven’t been diagnosed with anything officially. But my whole life I have struggled with a multitude of Gastrointestinal issues. It sucks when a doctor looks at your x-rays and says “Well ya, your colon isn’t supposed to do or look like  that…Here have some Miralax” or when no anti-nausea med seems to work except for the one that makes you groggy and fell ‘out of it’ like Benadryl does.

Its frustrating, yes. But I have hope. I have a referral for a new GI doctor and am making an appointment after New Years. Even my geneticist told me based on our discussion and her evaluation that a gastric emptying study would be highly beneficial to my case. I pray we can find some answers as we are also scheduling with an electrophysiologist that my cardiologist referred me to for a tilt table test. Lastly, I scheduled my metal allergy testing and my chest MRI for the Nuss procedure, but genetics hit a snag and I have to resubmit a sample which I can’t send off till after New Years. Then it’s 3-4 more weeks till I get my results and then I can schedule with my surgeon to go over the results of everything, the logistics of the procedure, and talk surgery dates. Some setbacks, but we are making progress! I still have tons of other adult things to do after New Years that are giving me minor stress, but I can’t really handle it till a few days out so I am just putting it out of my mind till then. I hope everyone has a happy New Years and that their Christmas was wonderful! I will be spending tonight (New Years Eve) on the couch curled up with an ice pack and a lidocaine patch on my back, watching Black Mirror with my dad. Love and Spoons! ❤

 

Nervous but Excited

School started this past Monday and the week leading up to it was a bit chaotic. My week went a bit like this: School shopping for adorable supplies (this takes forever since I’m very anal about organizational supplies), take a few hour break. Find clothes that are dress code appropriate since I haven’t had one in 2 years, break. Organize backpack and pick out first day of school outfit, break. This made the process last a few days but we did it and I got cute and organized! I’ll admit it’s hard to go back to a school schedule where every hour you’re doing something completely different. It’s annoying to have to be conscious of what I’m going to wear for the day especially since it’s triple digits here. It’s stressful remembering all my teachers names and wear I sit for each class and how to get from 2nd hour to 3rd and from 2nd to 4th instead on block days. But I made it! It’s Saturday and  now I’m relaxing, working on some projects due later next week, and making my best friend her birthday card. My plan of action is to go to the nurse during lunch in which I lay down in the Sick Room, close the door, leave on only the warm colored dim lamp, and rest. This gives me 20 minutes or so of in and out napping and laying flat that helps to reduce my headaches and take some pressure off my neck for a while. My nurse is amazing by the way! She’s kind and helpful and if a situation were to arise where you were being taken advantage of, she’d back you. She has helped me some much these last few years, she even helped me realize what I truly need is an IEP to help protect me when my cognitive functioning isn’t at it’s best.

mri

My neurology appointment was also the week before school started. We talked and decided the best route was to do and EEG and an MRI to cover our bases and for when I transfer to an adult neuro. They are both this Monday and I’ll admit I’m nervous. My suspected sensory processing disorder could be thrown into overload and I could potently have a panic attack and that would not be good. I also have to be running on only 4 hours of sleep for the EEG and I still have to go and function at school. That’s what is really making me anxious. Though I may be able to handle it since me sleep has been declining these past two weeks. I went from waking up occasionally, to waking up 2 or 3 times, now I’m waking up up to 5 times a night. I even had a terrifying sleep paralysis episode. I haven’t had one in a very long time, probably over 6 months. But I feel excited for results and a new plan of action. I’ll write a post once I get the results and once we figure out a new way to handle them if need be. For now I’ll see ya’ll soon!