The imps have been told they have a snow day tomorrow, which is super happy for them and busy for me. Anticipating this frozen hell, I did some meal prepping and stocked up on things I could just toss on the stove, no refrigeration required.

We’ve lost the Internet and power before, and I’m not sure which is worse because children have homework they cannot complete offline and textbooks they cannot read offline. It’s a whole different kind of upsetting for me, because when I take a class I always order the paperback book, even if the virtual one is included. I like to study away from the electronics and having multiple pathways to the same information in the brain (writing, speaking, reading, hearing…) all helps. I taught IT for a few years and always insisted on students having a physical copy of the book they could take notes in, highlight, and underline and study from for their exams once the class is over. Seeing my child rush to get work done before we lose the Internet, power, or both, makes me shake my head as much as when I went to the grocery store for veggies and saw angry people arguing over who got to the last container of milk first.

I know the practice is to stock up on eggs, milk, and bread, but unless you are going to make French toast or bread pudding that’s kind of useless. It’s okay though, we all do those useless little things that make us feel in control when life spirals out of control, like during a snowstorm. If your crutch is having bread, milk, and eggs, by all means do that and feel secure. Mental health is important, even more so when you are stressed.

I took a mental health holiday this week and skipped out on the Liquid Friday book blog, sorry readers but my heart wasn’t in it this week. A lot of things have been going on in my life and though I have the tendency to turn everything around to a good thing in the end, they aren’t necessarily great right now. I’ve been living with autoimmune illness for most of my life though the diagnosis only came about 16 years ago. Knowing that it wasn’t all in my head was a good thing, but I feel like at least one of the learned people I went to for help should have connected the dots sooner.

I did ballet, gymnastics, and exercised for two hours a day to stay fit in my teens but I had joint pain and my ESR was elevated. I also had a stomach ulcer and was on Zantac for a while. Pretty weird things for a “normal” teen but we had moved from a city to the suburbs and I ended up with allergies to trees, grass… so I wrote it off mentally as just the stress of the move or physically acclimating myself to the new area. I had so many other little signs, even the ones doctors overlooked in my bloodwork that were like red flags to a rheumatologist. A few years later I started college, another move, and had a rapid weight loss followed by an insane amount of weight gain (+50lbs) though my diet remained largely the same and I did a lot of walking. Eczema and psoriasis were added to the list of problems and something was going on with my thyroid, though they wouldn’t find that out until 3 years later. Still I pressed on and went to nursing school. I graduated tops of my class, though under my uniform was ace bandages on both knees and wraps on my feet. By this point I had bigger digestive issues and at only 21 years old was suggested a colonoscopy to look for ulcerative colitis, a disease in my family. Still more doctors but no definitive diagnosis. More allergy testing. Turns out I reacted to everything including the control-histamine response. Then came asthma and the occasional steroid injection which just shut everything else down for a while and outside of ear infections I felt normal.

Got my tonsils out to stop recurrent ear infections, and thought I’d be in the clear for a little while. Worked as a nurse after graduation and hypoglycemia became an issue. I was told that it was likely that I would have diabetes later because that’s what happens to lots of people with low blood sugar. Tried to watch my diet, but I was very restricted to begin with for suspected food allergies.

I got married, got pregnant with my first child and discovered lactose intolerance at a time I needed more calcium than ever. I turned to supplements and carried on. The pregnancy was problematic and I was given a 5% chance of carrying my daughter to term. I left my job and focused on her. Minimal stress, supplements, and bed rest… a miracle happened for us and she was born healthy. By the time I weaned her I got pregnant with baby number two and tried to just continue on.

Shit just kept happening.

Four more miracle children and three bouts of gestational diabetes that required insulin and a dietician to tell me I wasn’t eating enough later, I weaned my last baby from breastfeeding and that’s when everything got ugly. The minor aches and pains became insurmountable obstacles that hampered my trips to the zoo and other favorite outings with the children. It got to the point where I could barely walk and my weight fluctuated again with no real changes to my diet.

It was a snowy day like today and I couldn’t open my mouth without pain. I couldn’t eat and moving my mouth to speak was agony. My fingers twisted up with cramps that lasted hours and didn’t relax even with potassium supplements. I saw a rheumatologist who told me I was a fat American and needed stomach stapling. I had been to dieticians, nutritionists, and doctors and I went with a positive ANA (lupus test) to her for help and she just yelled at me about my weight and told me the pain was fibromyalgia.

I was ready to throw in the towel but I had so much to live for, the beautiful children that depended on me, a husband that helped me with everything, and the hope of a life without pain. I just didn’t want to see another doctor, hear another misdiagnosis or criticism… I was tired.

I tried one more doctor.

This one listed to everything I had to say and told me that it sounds consistent with fibromyalgia but he wanted to run some more blood tests. He took the blood in his office without making me go somewhere else and wait again and he called me a few days later to come back and see him again. He had news. He had a diagnosis.

With the treatment, in I don’t know how many years, I could get out of bed without help, walk around the house, hold up three fingers… I was told to stay on the drugs for six months and then try and wean off them. We tried weaning SLOWLY over a month, and with a lot of head scratching we gave up and tried again two more times when my bloodwork looked better with no success. I have a rounder face from the steroids and unlike most people lost weight on them because a lot of my weight gain was from fluid retention(something other doctors missed). The medication helped but it didn’t fix everything. I still had pain and flare ups, the butterfly rash on my face, muscle cramping, the stiffness in my joints possibly from years of joint damage while I waited for a diagnosis, and we added Plaquenil, a disease modifying drug people now associate with Covid-19 but was originally used to treat malaria. We found I also have the gene for Familial Mediterranean Fever, which explains the fevers and some of the other symptoms. I have medication for that too but the side effects have made me put it on the shelf until I’m a little braver or a little more desperate.

Life continues.

I’m sitting here typing this out while looking out my window at the snow and sipping high flavonoid/flavanol cocoa powder, 4 grams of sugar, and hot water (absolutely no dairy) to do my part for my blood pressure and blood sugar, since my A1C is high enough to officially say I now have diabetes. I am not phases by this most recent addition to the autoimmune disease family I possess: Sharps disease, asthma, colitis, myositis… and the list goes on. I’ve been on the diabetic diet three times in the past and OCD is my superpower so I weigh and measure everything so I have the appropriate grams of carbs at the appropriate time of day with the right combination of protein, fat, flavonoids, and fiber. If I managed to eat my way into diabetes, I will eat my way out of it again or go on insulin(pills don’t work for me since I don’t digest anything properly including blood pressure pills)-not my first rodeo.

Why all this info?

I just want to remind you, there is always hope. No one can kill it, no diagnosis can crush it, no challenge can stop you. Not even the store running out of eggs, milk, or bread before a big winter storm. You got this! Even if no one sees what a warrior you are, how brave you have to be each day, or how hard you have it… illness does not define you, it is just a bump in the road and maybe you need to put on a cape everyday and remind yourself of your super power.

As for me, I find workarounds and I’ve learned to ask for help. It’s the scariest thing to me, the OCD warrior, to say, “hey, I could use a little help,” but sometimes you just need to put on your big girl panties and ask for help, whether its asking a neighbor to help you shovel your driveway or asking someone in the store to reach you that last loaf of wholewheat bread before a storm… don’t be afraid to ask. The worst they can say is “no”-like we haven’t heard that enough times already, right? Ask for help. And if you know someone struggling with illness, remind them not to give up. be that person that says “yes”.

Now, while you still have power and Internet (hope it stays that way for you), find out where your heating stations are and write them down for you and possibly a neighbor or two that needs to know. If you can help someone, great, please do, and if you need help ask a friend or neighbor. Please don’t call 911 to see when the power will be restored, they’ll be busy with emergency calls-check with your electric company.

I know my children will be out trying to build a snow fort and making a cash of snowballs to be ready for an all out war with each other followed by a warm hot chocolate (theirs will have milk). Sleds are waiting for the perfect hill or for the kids to safely give the dogs a ride to the park.

As for what to do with all the bread, milk, and eggs you bought-French toast is an option and below is a recipe for bread pudding-

Bread Pudding-

Ingredients:

5 to 6 slices day old bread cut into 1″ cubes, or let the kids tear them into small pieces

2 Tablespoons melted butter (I use unsalted and toss in the microwave in a safe bowl until liquid)

1/4 cup raisins (optional)

1/4 cup chopped walnuts or pecans (optional)

2 cups milk (or nondairy substitute)

1/2 cup white or golden sugar

1/4 cup brown sugar(lightly packed)

1 teaspoon vanilla sugar, vanilla extract, or vanilla paste

1 teaspoon ground cinnamon

4 whole eggs beaten

Directions:

1. Preheat oven to 350 degrees F (175 degrees C)
2. Put your bread pieces into your baking pan (8 inch square, 9 inch rectangle…meatloaf pan-whatever you got)
3. Drizzle over your melted butter, add raisins, and nuts(optional)
4. Mix your milk, sugar, eggs, vanilla, and cinnamon in a bowl until creamy and smooth. You can use an electric beater. You just want everything to look uniform, no big clumps of egg white or yolk.
5. Pour this over the bread mixture in the pan and let it soak in. It’s okay to mix it with a fork but your raising and nuts will probably fall to the bottom of the pan.
6. Bake about 45 minutes, until firm. Serve warm with whipped cream, ice cream, or chocolate drizzle.

Depending on your bread, it may have more carbs, so if you are watching your carbs, count everything out and cut the appropriate size piece. When I make it for me, I cut out the white sugar completely, switch the brown sugar for sugar in the raw, omit the raisins, and cut out any add-ons like ice cream or whipped cream unless I make it myself with almost no sugar. I also add 1/4 cup almond slivers and 1/4 cup walnuts. There’s some research out there that says nuts help with diabetes, nuts are satisfying, and walnuts in particular are heart healthy-so it’s a win.

You can also add in an apple if you’re trying to get more fiber. You will have a moister pudding, but apples are so good. Just remember that if you are counting carbs, you gottta count that, too.

If you need more protein, add a scoop or two of protein powder to your wet mix before you pour it over the bread. You can pretty much do that with any baked good, really important if you’re doing the whole macros thing.

When I am on the diabetic diet, I eat normal food. I just count my carbs and portion everything accordingly. I used to use a sheet of paper from my diabetic educator with all the foods I ate and how much and when, now I have an app that does all that for me (yay! for technology) but if the power goes out and my app doesn’t work, I still know what my exchanges are and I read labels. I can even have cake or ice cream so long as I weigh it and have no more than 15 gram carb serving. Yes, some food choices are better than other when controlling your sugar, but denying yourself something you really want often makes people cheat. Better to portion than to cheat. Of course, check with your dietician or diabetic educator to see what’s best for you, but remember that stress doesn’t help.

Told you OCD was my superpower! Find yours and have fun with it.