In an effort to reduce wasted food, I decided to have a taste testing with the seven kids who will be in school this year to see what they like for their lunches and snacks.
I didn’t realize I had bought quite so many snacks. I’ve been building up my supply over the last three weeks.
The result was that Noah liked absolutely everything. Most foods were liked by all seven (or the six who can eat gluten depending on what the food was). Everything was liked by at least three people.
As I mentioned in my post about my morning routine, I really like to have the house clean all the time in order to make my days go smoother and for me to be a better mother. I also mentioned that keeping the house clean and organized does not come naturally to me. It is something I have worked on for years, tweaking what I do and incorporating new routines as needed.
For the last few years, I’ve used my bullet journal to help keep me on track and reach my goals for cleaning. Each month I make a page for my daily/weekly/monthly to do’s with squares for the dates to complete each task. As I complete each thing, I color it in. I love coloring in those squares. Having all the day’s boxes colored in is such a great feeling, almost better than the feeling of having a clean house.
I of course have all the things in my morning routine on that page. Then I have some things on the computer that I do every day (daily thread on a Facebook group, adding to my letter to my aunt, updating our finances, a batch of indexing, taking a picture each day, and scrapbooking that picture for Project 365). Fritz does the 7 Minute Workout each day as well.
Once a month, on the first, I clean the dishwasher, the garbage disposal, and the washing machine. I deep clean the stove using the special cleaner and razor blade. I change my sponge and switch the little picture on the welcome sign my sister made me years ago. I rearrange our Lego calendar for the new month. I rub the vinyl letters on the living room wall to make sure they don’t fall off (vinyl letters and super textured walls don’t mix super well). And I clean the couch using leather wipes. Also once a month, on the 11th, Lola gets her heartworm preventative medication. Once a month, on the third Saturday I wash our sheets (twice a year I also wash the mattress covers and twice a year I wash the blankets and quilts).
I have several things I do once a week. Sundays I send an email to my oldest niece who is serving a mission for the Church in St. George Utah, Fritz cleans Rae’s cage, and we put the Sacrament in a baggie to take to church (those of us with Celiac eat Nut Thins instead of bread; for some reason when church switched from 9 to 10:30 we kept forgetting to take our special sacrament so I added it to my to do page). Mondays and Thursday I have a box for bringing in the trash cans (we can get fined by the HOA if they are still out the next morning). On Mondays, I clean the filter in our dishwasher with a toothbrush. Wednesdays I print the letter to my aunt and also send a copy of it by email to my mother-in-law in Ireland. Thursdays I mail the letter to my aunt. Also on Thursdays I make menus for the next week, order groceries (which we usually pick up Friday evening or Saturday morning), and make a list of what I’ll need to do to prep our food for the week once the groceries have been picked up. Saturdays I refill Ani’s pill containers for the week.
Not something I put on my to do page, but that helps with keeping the house nice, I often walk around the house while I read. It kind of kills two birds with one stone. I get exercise and I get some reading done, too. Sometimes I’ll grab one thing that is out of place as I make my circuit (which goes around most of the bottom floor). I put it where it belongs (or on the stairs to go up) as I continue around the circle. It’s a really painless way of straightening up.
It’s amazing how much these things, none of which take very long, contributes to the beauty and mood of our house. I encourage everyone to come up with simple things you can do each day in your home. I guarantee you will not be sorry!
Not only do I hate Celiac Disease, I hate how sensitive I am. Now, I am very, very careful about cross contamination. Our house is gluten free and I only eat at restaurants I trust. But even restaurants I trust aren’t perfect. I’ve only been glutened once before since I discovered Celiac was the cause of my digestive issues so I guess less than once a year isn’t bad.
This time a little piece of grilled onion ended up mixed in with my fries and I ate it before I realized it was there. The grilled onions at that restaurant are beer braised. Beer has gluten in it and so terrible things ensued. That was Friday. I’m already a lot better. The worst has passed. Now I’m just a little swollen and achy, but the weekend sure was miserable.
It’s been almost four months since we started getting diagnoses for Ani. At that point, she was sleeping up to 18 hours a day and worn out all the time. She was so incredibly sick.
What’s wrong with her: Ani has Ehlers-Danlos Syndrome, POTS, Fibromyalgia, and Celiac Disease.
What we’re doing to treat her: Every day Ani takes a beta blocker to help control the racing heart from the POTS. She did an experiment trying various POTS remedies and found that Nuun electrolyte tablets work best for her. She takes one in the morning and one in the evening now. She takes Lyrica for the Fibro pain. Recently she had to up her dose because the drilling pain that she now knows is from the fibro started up again. Hopefully, we’ll be able to decrease it back down in a couple weeks. She is careful with her range of motion to avoid EDS pain and, of course, she eats no gluten so the Celiac is usually a non-issue. She has been going to physical therapy for her neck (side effect of the EDS) and that pain has decreased a whole lot, enough that she no longer takes Aleve regularly. She is getting better at watching her body temperature (she has trouble regulating her body temperature because of the general dysautonomia that includes the POTS).
So how is she doing?
Amazing.
She’s still so incredibly sick, but when I think of how my daughter was just a few short months ago, the difference is incredible and so encouraging. I’ll be honest. I did not think she would survive. She was getting worse and worse. I thought she was going to die. She thought she was going to die. It was bad.
In March, a friend asked if they could dedicate their monthly fast to Ani’s health. Her whole family fasted for Ani. She encouraged others to do the same. I will always believe that changed everything for my daughter. It was within days that we started getting answers. We found doctors willing to help instead of brushing her off. We got medication, we got a treatment plan to help her, we got diagnoses.
She still has bad days. Some are very, very bad. On the Fourth of July, we had a church picnic. It was hot. We live in Texas, after all. She got overheated. Getting overheated means she got sick. Very sick. She slept most of the afternoon/evening that day. The big difference is, though, that the next morning she got up and was functional. She didn’t need three days to recover. That is a miracle. She still gets exhausted relatively easily, too, and she never feels truly good. But it’s livable.
Over the last week, she spent several days being a substitute nanny for three little girls and still did her normal program directing at taekwondo and also babysat a little girl Friday night. These are things she literally couldn’t have done just a few months ago (though I think she might sleep most of today since she was so exhausted by last night). She’s got plans to go see Spider-Man with one friend and Wonder Woman with some other friends. She’s training at taekwondo and working toward her second degree black belt again. She’s actually being able to be a human. Most importantly, she has hope for a future. A sometimes painful, taking medication for life future, but still a wonderful, full, happy future.
We already knew Ani had Celiac Disease and insomnia. She was diagnosed with POTS last month. We finally got a copy of her upright MRI report. It was not good. She does not have Chiari, but she does have a totally jacked up neck. She has mild straightening of the neck, a 2mm subluxation at C4, multiple herniations C4-7, and narrowing of the cerebrospinal fluid space.
Yesterday she saw her rheumatologist. He is a soft-spoken, kind man. He read her MRI report and looked at her and said, “You are in pain.” He sympathized with what she has been through and promised he will help her get well.
So he added two more diagnoses. She has Ehlers-Danlos. It is likely many people in our family – including me – have it mildly. She’s having a lot of pain because of it because her joints are constantly going out of place. Her hips and shoulders are misbehaving the most lately. For that, she is to continue taking Aleve and use wraps, K-T tape, etc. She is also to do isometric exercises to help “teach” her muscles where to stop rather than allowing them to keep going as far as the joints will let them.
She also has fibromyalgia. For that, he prescribed Lyrica and wants her to do some gentle exercising every day. One day she’ll get back to training at taekwondo, but we need to fix her neck first. It makes sense that the Aleve was helping some, but not everything. Her fibro pain isn’t from inflammation so the Aleve was only good for the EDS pain and possibly her neck pain.
He said she really needs to get deeper sleep. We have noticed that when her pain is high she can’t sleep but when she can’t sleep her pain gets worse. It’s a vicious cycle. When her pain is really high she ends up with muscle twitching. So to help with the sleep, she is to take Benadryl every night. It is the only thing that will reliably knock her out. Melatonin doesn’t work for her and we tried Aleve PM and while it made her tired, she still sat staring at the ceiling until well past midnight every night.
On Tuesday she will be seeing the neurosurgeon to decide what to do about her neck. This has been a long, hard road to diagnosis. It is such a relief to finally be making concrete plans for helping her to live a normal life with limited pain.
Smaller on the Outside 