The afternoon Nick and I arrived home from Salt Springs, Luc was really sick. His eyes were bloodshot red and stuff was oozing from them. He was out of it and looked extremely fatigued. Matti had a cold that started the week prior and must have passed it onto Luc. He had trouble opening his eyes and covered them with his hands while screaming they hurt. We noticed he had several raised bumps on the surface of his eyes which could have been mast cells reacting to the infection. I gave him some Benadryl to calm down extra mast cell activity in his body and to bring down his fever. He soon fell asleep in my arms, while I reached out to the online masto community, I’m forever thankful there is one! They all recommended taking him to the ER and advised me on which antibiotics to definitely avoid. I nervously prepared to take him in when he woke about 20 minutes later.
Luc has had many scheduled visits to a different hospital in various departments. But I haven’t brought him into an ER since the day, three years ago, I was desperately searching for answers to his mysterious reactions. You see the ER can be a scary place for people with masto. Since it’s a rare disease, most medical professionals have never seen a case, let alone understand the complications with it. I’ve read all too often stories about ER doctors not agreeing with the rare disease diagnosis and stopping their current medication or ordering the wrong medication putting them in further distress. Also there has been a few cases recently of hospitals removing the rights of the parents when they disagree. Kids have actually been taken away from these parents! It’s frightening. These cases were in the US and these children along with having mastocytosis also have another complicated condition called mitochondrial disease. It still terrifies me though, and I know from experience going through many doctors that just don’t understand the condition. We have a large binder that contains all the information on masto, ER protocols, photos, food lists, triggers, and more. This binder goes everywhere with us incase of that dreaded day we end up in the ER. So that day finally came and I took him in. The check in clerk upon hearing about his condition, told me he hasn’t heard about masto for over 20 years! I was impressed that he even knew the name. Anyways I was relieved when they isolated us from the waiting room right away, which might have been because his spots are alarming, but I like to think it was because they understand his immune system is compromised. I was still nervous waiting two and a half hours for the doctor to come in. He quickly read through our book of masto ER protocol. He was hesitant to prescribe anything but sent us on our way with a small tube of antibiotic eye cream. He told us to hold off giving it to him until he could check with his specialist. He texted us from the ER the next day and gave us the ok to try. We tried it once in one eye. It seemed alright at first but about 5-10 minutes later Luc started screaming it was hurting his eye, so we didn’t use it again. It’s so hard to know what his crazy mast cells react to! Thankfully a few days later his eyes started clearing up on it’s own and he recovered from the infection. Overall through the experience, I’m less nervous to take him into our local ER now that he’s in their system. Although I still won’t rush to go there unless a serious situation arises!
The rest of us in the family are still battling this cold though. Matti’s cold seems to be gone but his chest cough remains. Nick had to take a week off sick and we both have been experiencing deep chest coughs. We never get this sick! We will get the odd beginning of a cold but it never amounts to much, our bodies always fight it off before it gets really bad. I think it’s due to the plant based eating lifestyle we now follow. But this infection is stubborn and keeps hanging around. While Nick was off we didn’t feel like cooking much and ended up making plenty of soups. The warmth of a tasty soup is so soothing in the body, as well as they can be thrown together quite easily. I like loading them up with plenty of nutrients too.
This soup recipe has a roasted butternut squash base which gives it a touch of sweetness. The onion, garlic and kale are considered power foods filled with cold fighting nutrients and along with a few other spices, also adds to the flavour in the soup. The addition of red lentils and black beans provide plenty of filling protein and gives the soup a nice texture, then a dash of lime juice brightens it up. Don’t forget to stir in some chopped cilantro too! If you like Franks Hot Sauce, a few drops on top definitely is a great addition. Enjoy!
- 1 tbsp Coconut Oil
- 1 Red Onion, diced
- 4-6 Garlic Cloves, minced
- 2 tsp Cumin
- ½ tsp Chilli Powder
- 4 cups Low Sodium Broth (I use two broth cubes and 4 cups water)
- 1 Roasted Butternut Squash (3-4 cups depending on squash size)
- ½ tsp Sea Salt
- ½ cup Red Lentils, uncooked
- 1 cup Black Beans, cooked
- 1 cup Red Pepper, finely diced
- 1 cup Kale, finely chopped
- ½ cup Cilantro, chopped
- 1 tsp Lime Juice
- Salt and Pepper, to taste
- Franks Hot Sauce
- Preheat oven to 400 degrees. Cut the top stem off the butternut squash, this makes it easier to slice down the center. Standing the squash upright cut down the center to create two halves. Scoop out the seeds and discard. Place both halves cut side down on a baking sheet. Add a small amount of water (about ¼ cup) to the tray and place in oven. Cook for 30-40 minutes until flesh is tender and can be pierced easily with a fork. Remove and allow to cool while preparing the soup.
- Heat coconut oil in a large pot. Add diced onions and cook several minutes until translucent.
- Add minced garlic, cumin and chilli powder. Cook for another minute while stirring.
- Scoop out the flesh of the roasted butternut squash and add to the large pot. Add the broth and sea salt (if using low sodium broth).
- Blend mixture until somewhat smooth using an immersion blender. Or use a blender to blend until smooth (be careful as the soup will be hot), then return to pot.
- Add red lentils, black beans, and red peppers. Bring to a boil on medium high heat, then cover and reduce to simmer for 20 mins or longer.
- A few minutes prior to serving stir in chopped kale and lime juice. Season with sea salt and pepper to taste, and top with chopped cilantro. Add a few drops of Franks Hot Sauce if you like. Enjoy!