The Flaming Pot Holder

Note: I’m a bit rusty with WordPress, blogging, and editing, so please excuse the clunkiness of this post. The Flaming Pot Holder has been nonexistent since February 2013. Even in 2013, I was writing less and working more. Figured I could be paid to write and edit or I could write and cook for fun. Somehow, I wasn’t able to balance the two, and I chose work. Then I became ill, not the garden-variety sinus stuff I’d had in the past. But scary sick.

Condensed Version: 2013 to the Present

In the spring of 2013, I started losing weight. At first it was kind of cool. I assumed it was just stress and forgetting to eat. Then, without trying, I went from 153 pounds to 93 pounds. Most of the weight loss happened in 3 months. At my age, losing that much weight was scary. I also had other troubling symptoms: fevers, swollen lymph nodes, extreme fatigue, joint pain, fainting, low blood pressure, brain fog, GI issues, breast lumps, itching, and night sweats. During an 18-month period, I had two surgeries, 11 biopsies, two ER visits, multiple invasive tests, and saw over 15 specialists. No one knew what was wrong with me. Guesses ranged from anorexia (um nope, not even close) to Lymphoma to various autoimmune disorders. No one could make a definitive diagnosis, but one caring doctor told me it might be time to get my affairs in order. Scary stuff.

Diagnoses

After multiple incorrect diagnoses, I saw a pediatric geneticist at Vanderbilt on August 18, 2014 (one year ago today and what a year it has been!). Within two hours, I had multiple diagnoses: Ehlers-Danlos Syndrome (EDS) with Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, and most likely Mast Cell Activation Syndrome (MCAS). It only took 48 years for a diagnosis!

The primary condition is EDS. It is a rare genetic connective tissue disorder. There is no cure for EDS, you can only treat symptoms. Same thing with POTS and MCAD. For me, the key seems to be avoiding triggers and injuries. My triggers include second-hand smoke, formaldehyde, VOC chemicals, alcohol, stress, and certain foods. Not always easy to avoid triggers. Especially the chemicals and cigarette smoke. For a year, I was essentially a homebound bubble-girl. Then, I quit my job on Halloween and that helped cut down on the stress tremendously.

Avoiding my triggers helped, but I needed more help. I worked on my eating habits. I tried several diets: low histamine, low allergy, Paleo, Specific Carbohydrate Diet (SCD), autoimmune protocol (AIP), Fermentable Oligo-Di-Monosaccharides and Polyol (FODMAP), and Gut and Psychology Syndrome (GAPS). I seemed to stabilize on a modified SCD diet with lots of homemade stock and smoothies, I ate by the legal/illegal list. I quit losing weight, but wasn’t gaining any weight. It got to the point where I was dangerously thin, so I starting eating anything just to gain weight. We called it the Potato Chip-Bacon-Reese’s Cup diet. I do NOT recommend it for anyone. But I was desperate. After almost a year, I gained enough weight to be in the healthy range at around 135 pounds.

The Goats and Hope

After the diagnoses, I went through the typical stages of mourning: denial, anger, bargaining, depression, and acceptance. I was stuck in depression. Being isolated and in constant pain was challenging. To cheer me up, friends sent me animal videos to watch. One of my favorites was of two goat kids in pajamas running around a barn. I fell in love with the baby Nigerian Dwarf goats from Sunflower Farm Creamery in Cumberland, Maine. I watched all the videos from Sunflower Farm, followed their Facebook page, and became hooked on their live barn camera. During kidding season, Sunflower Farm keeps a camera either on the barnyard or in the barn 24/7. I watched it daily. Had it on in the background while working on other things. If I heard something interesting, I’d go watch. I was fortunate to watch Bonnie give birth to her kids. It was amazing to watch it live. I also corresponded a few times with a wonderful woman named Hope. She and her husband Chris, and daughters Lila and Tess run the farm. Before she took the camera down for the season, Hope shared some stories of other goat cam watchers: retired farmers in a nursing home who want to remember what it’s like to be on a farm, the veteran serving overseas who will come home to his family and their adopted goat kid, and so many other sweet stories. Privately, I shared how much the camera had meant to me. How it had brightened my days, and helped motivate me to become healthier and stronger.

I’ve always loved goats, actually all animals. When I was younger, my dad and I bought my mom a pygmy goat for Christmas. Well, Eve got fatter and fatter. It seems we bought a pregnant goat—it was a two-for-one special! She gave birth during an ice storm on Easter Eve to her little Addie (the cutest, but meanest goat ever!). We also had rabbits, guinea pigs, chickens, dogs, and cats and various other animals my mom had in rescue (she was a wildlife rehabilitator). I’d always dreamed about retiring and having a small hobby farm with llamas, goats, etc. Maybe even have a therapy animal to take to hospital patients, nursing homes, schools, etc. After getting sick, I doubted that dream would ever come true. Then I started watching the barn cam and I realized maybe it could happen.

The Pool

During the time I discover the barn cam, our friends left for a three-week vacation and we housesat for them. They had a pool and I started swimming. Exercise is challenging with EDS—some say you gotta move it or you’ll lose it (“Motion is Lotion”). Others say exercise is bad, you’ll injure yourself. I hadn’t found the happy middle-point. I was continually injuring myself on land. Even just picking up my coffee cup, could cause a sprained wrist with torn tendons. Walking was not good, stress fracture in my foot. Recumbent bicycle was good, but boring. In the pool, I can do most anything carefully without injury. The freedom is amazing. And for about 30 minutes to an hour each day, I am virtually pain free. This was unheard of for the past two years! It is an amazing feeling. Our friends came home and they graciously said we could continue using the pool. It has been a blessing.

I swim, walk, jog, do my isometrics, cardio Katie-cise workouts, yoga, meditation, and think about the goats we might one day have. And dream about the farm where we might retire. My workout buddies include birds, squirrels, chipmunks, bunnies, friends, and Matt. The endorphins kick in, my mood improves, and I’m happier that I’ve been in ages. Swimming and daydreaming of a healthy future have helped bring me back to my old self. I’ve gained weight, muscles, strength, balance, and confidence. The difference in a year has been amazing. I am beyond grateful to these wonderful friends, adorable animals, and my online friend Hope.

My Rock

I’ve also been blessed with an amazing husband who has stood by me through all the scary, icky sickness. I know we said, “In sickness and in health, til death do us part” in our wedding vows, but I never expected it to be so literal or so soon. When we checked off a bucket item list—seeing Yo-Yo Ma—we had the pleasure of meeting Mr. Ma and he asked if I had a rock at home. I do! Thank you for your love and support, Matt. Don’t think I’d be here without you.

Chicken Stock (A.K.A. Liquid Gold)

One of the foods that helped me the most was a hearty chicken stock. There were days I couldn’t swallow solid food because of the strictures and the pain and this stock was incredibly nourishing. We usually have some in the freezer.

Note: This recipe takes a long time to cook, anywhere from 6 hours to 24 hours. I’ve made it on the stovetop and in a crockpot. I’ve used roasted bones and raw bones. I prefer the taste of the roasted bones, but think the raw bones produce a richer, more gelatinous stock. I’ve also used a mixture of roasted and raw. You can save the bones when you roast a turkey or chicken and freeze them. Then mix them with fresh bones. The choice is yours. This is like most of my “recipes,” measurements are not exact, I wrote something down to give you an idea so you can customize it to your taste. There are many variables, but the bottom line is: if you start with good, healthy, whole ingredients you will probably end up with a good stock. Also, this can be made with beef bones for a hearty beef broth. Or you can use only veggies for a nice vegan broth, won’t need nearly as much cooking (tomatoes are great additions to the beef and vegan broth).

5-6 Pounds chicken bones (I prefer backs, necks, wings, and chicken feet)

1 Tablespoon apple cider vinegar

4-6 Quarts of filtered water (or enough to cover the bones and veggies)

4 Celery stalks, chopped in chunks

4 Carrots, chopped in chunks

4 Small onions, quartered

4 Cloves of garlic, smashed and peeled

1 Teaspoon dried parsley

4 Bay leaves

Sea salt & peppercorns

Handful of fresh parsley (to add at the end)

Turmeric, celery salt, pepper flakes (optional add-ins)

Place the bones and veggies in a large stockpot or a crockpot, add apple cider vinegar, salt, pepper, bay leaves, dried parsley, and cover with water. Bring to a boil. Skim off any foam, if you want (or don’t, all depends on your preference, I don’t mind a cloudy stock). Reduce the heat, cover, and simmer for 6 to 24 hours (it all depends on your schedule and patience). When you are almost finished cooking, taste and adjust the seasoning. Then, add the fresh parsley and cook another 15 minutes.

Then comes the fun part—straining. I usually double strain it back into a large, clean pot. You can use a chinois, mesh strainer, cheesecloth, whatever you prefer. Next critical step is cooling. We keep several ice packs and frozen water bottles in the freezer. I put them in a jumbo clean resalable bag. Then plunge it into the stock for a quick chill. Pour into smaller containers and store in the refrigerator for 3 to 5 days or in the freezer for up to 6 months.