Looking forward, Looking back

After 10 months, no more parasites! (And other musings)

This month, I turn 37 years old! My plan is to celebrate in gentle, joyful ways across ten days! I’m still 95% bedbound with a FUNCAP score of about 3.0, which is really hard.

But I’ve made it through another year, and that is something I’m truly grateful for, though I also long to be made Whole and Holy with my Savior in Glory!

Anyway, the point of this loosely-birthday-inspired post is to tell you: Things have been happening! And things are about to happen. And I want to share 5 categories of the things with you today!

Photo of a birthday cake silhouetted against a sunset sea by reza shayestehpour on Unsplash

Parasites are Gone?

Earlier this month, I had a telehealth appointment with my Nurse Practitioner (who oversees my treatments for CIRS and ME/CFS). And guess what?? No more parasites! After TEN MONTHS of testing and treatments, my intestinal parasites are GONE!!! Praise God! My gastrointestinal symptoms, though persisting, have improved noticeably!

Sibling Visits

Over the past 8 months, I’ve gotten to see my siblings at least twice! Including at my youngest sister’s wedding, which I was able to attend in my wheelchair. Getting to see loved ones is one of the most special things in the world to me. AND I’ll get to see even more relatives next month!

Photo of me at a wedding, reclining in my wheelchair, wearing a pink respirator mask, and wearing a blue bridesmaid dress

Mr. Nomad’s Schooling

Mr. Nomad (my husband) is almost done with graduate school (while also working a job full-time and being a caregiver to me part-time)! He has passed all his catechism exams and has only one class left before graduating with his Master of Divinity!! He has worked so faithfully and skillfully, and I’m so proud of him! It will be a day of celebration and relief when his years of hard work pay off with a degree!

Four Recent Small Joys

• Eating dairy products (like cream cheese, DIY parmesan crisps, and cottage cheese with blueberry preserves)

• Sweet Loren’s gluten-free chocolate chip cookie dough

• Learning about my scalp and hair, inspired by YouTube videos by Abbey Yung. My oily scalp and dry ends do best with clarifying shampoos, deep-conditioning conditioners or masks, leave-in conditioners, and textured heatless hairstyles! It’s been fun to learn new things, to fall in love with affordable hair care, and to watch my hair getting healthier!

• Listening to audiobook series like The Penderwicks and C.S. Lewis’ Space Trilogy

  

  Photo of Pantene Sheer Volume shampoo, Dove Intensive Repair Hair Mask, L’Oreal 21-in-1 Leave-in Conditioning Spray, and Garnier Fructis Sleek and Shine hair oil

Photo of the five-book box set of The Penderwicks book series by Jeanne Birdsall

Three Desires for This Next Year of My Life

• I would really love to have a low-energy way to spend time outside. Our current living situation (no private porch) combined with my current functional capacity (i.e. I need to be horizontal most of the time) makes this a big challenge.

• Mr. Nomad and I very much desire financial stability (which means that our incoming money would match or exceed the cost of our basic necessities). Right now, that is not the case, and things we’ve tried in order to rectify this situation, so far have not panned out. It can feel quite frightening, but we’re hoping that after Mr. Nomad’s upcoming graduation there will be more time, opportunities, and/or leverage to figure this out. Will you pray for us?

• I want to develop a better understanding (through medical consultations and blood tests) of the levels of and reasons behind my systemic inflammation and immune system overactivation. And then I want to develop a comprehensive treatment plan to help address this issue.

Conclusion

It seems appropriate to finish this update by telling you that I’m about to go eat another ball of cookie dough!

Here’s to joy and grief, connection and loneliness, need and plenty!

Thanks for reading, and Happy Birthday to me! :D