After numerous dead ends, setbacks, and advancements on one front as I lost ground on another, I am thrilled to report I am finally, undeniably better.
- My reactions are not as severe as they once were. This time last year, I was going into anaphylactic shock 1-3 times per week caused by an assortment of triggers. As I write this, I cannot recall the last time I "shocked." I still experience chest tightness, a barking cough, mental confusion and an overwhelming drunken sensation during acute episodes, but these symptoms are not life threatening. We know how to deal with them. And thankfully, I am no longer terrifying my family on a regular basis. I continue to react to a frustrating number of things most people would never consider to be unsafe, but the receding strength of my reactions gives me hope that one day I may live a life with fewer walls.
- I have more energy. I continue to experience fatigue, but it feels more manageable now. I don't think it's easier just because I'm used to it. I don't think anyone ever gets used to feeling like standing is the healthy person's equivalent to a half marathon. I just understand it better and can anticipate it with more accuracy, which makes it livable.
- For the most part, my pain remains manageable. I have good days and not so good days. I can't do everything I want to do, but I can do most of it without pain taking me over.
- During my check up with Dr. Yakaboski this week, my thyroid, adrenal and liver function all showed improvement! Praise the Lord!
I want you to know where your prayers have led my family and me. So in the spirit of full disclosure, I will share a few key elements which have helped me to heal:
- Let's get this one out of the way: Daily (and sometimes twice daily) coffee enemas. TMI, I know. Whatever. Let's get over it together, shall we? They have been a huge help in reducing my histamine burden and toxic load. My entire body feels instantly better afterward, especially during acute episodes. Coffee enemas are a key aspect of natural cancer treatment per recommendation of The Gerson Institute. You can read an article about it here. My friend Caroline (aka Gutsy) also has an informative post about coffee enemas if you are curious about the method to my madness.
- Stress management. We all know that stress is bad for us, a fact which is doubly true for people with chronic illness. Stress is an actual trigger for mast cell activation disease patients, and can cause anaphylaxsis all by its lonesome. I have been forced to learn to manage my stress. I realize that not everyone can live how I live. Some people work 9 to 5 jobs or are full-time students, some mothers have 8 children and some people have zero familial or community support. Nevertheless, I think everyone can afford to adopt at least one of the following principles:
- Prioritize your life by what must be done today, what should be done today, and what can wait until tomorrow. Guard your "spoons" so you can do the things which matter most.
- Have a plan, but hold it loosely. This helps you to balance rising above your disease and giving yourself permission to be sick. Frustration about your illness only adds to your stress load. Believe me. Holding your plans loosely also gives the Holy Spirit an opportunity to shape your day as He sees fit. His plans are always better than yours. Living life at the ready for Him to sweep through and involve you in something eternal is the most adventurous and fun way to live!
- If you are able to get out of the home, limit yourself to one event for the day. No more. If you work or go to school, that is your one outside event for the day.
- If you are running behind on dinner or kids are whining or you feel the pressure of a million things left undone, STOP, BREATHE DEEPLY, AND PRAY. God is eager and able to give you the grace you need to complete the tasks of the day. Running about all frantic and flustered helps no one, least of all you.
- Smile, laugh, sing and dance as often as you can. Especially if you don't feel like it. Force feed yourself with happiness.
- Spend time outdoors. Fresh air and sunshine are good for all the bits that make you you.
- Reserve time every day to do something creative or enjoyable. I learned this one from my Jenny. She was good at knowing what was good for people.
- Take mornings slowly as often as you can. Sleep in whenever possible.
- Limit toxic and difficult relationships. Many people would advise you to nix these relationships altogether, which is great advice in very particular situations. But I often find it is neither practical nor biblical to completely sever all ties with the unlovables in our lives. Many of these relationships cannot be escaped for one reason or another, and Jesus calls us to love the difficult ones because He does. But create boundaries. Boundaries are a form of love. No one should be allowed to have a free go at you whenever they please. It's not good for you or for them.
- Deep breathing and meditation. I recommend specific meditations such as memorized scripture and reflections upon God's character, His blessings, and His history of faithfulness with you. Read and ponder His promises in the Bible. These good, wholesome thoughts nourish and invigorate the soul, which is what stress management is all about.
- Count your blessings. Keep a gratitude journal. Anger and bitterness (stressors) cannot find entry into a thankful heart.
- Daily detox baths. I take a 30-45 minute bath every day using 2 small scoops of magnesium crystals and sometimes add either 2-3 cups of organic apple cider vinegar or 1 cup of bentonite clay.
- Regular exercise. I have experienced health slumps which have caused brief lapses in the discipline, but if I can at all, I do--usually 4 or 5 days per week. I like a mixture of low impact cardio and yoga. Usually, I use the Wii Fit board as a step, and walk up and down while I watch something on Netflix. Sometimes, I do a few minutes of light rebounding sitting on the side of my bed. I try to do at least a little yoga at the end of every workout. Yoga is my favorite. I like it because it's challenging without being harmful or dangerous for my joints, and it makes me feel oh so good.
- Twice monthly lymphatic drainage treatments at Dr. Yakaboski's office. My frequent reactions cause my lymph nodes to swell painfully. These treatments give me welcome relief from discomfort and healing support for my body. During the treatment, Dr. Yakaboski also performs acupressure work to balance my emotions using a technique called B.E.S.T. A particular application of this technique, which takes the body out of "fight or flight" mode, has proven to be life saving for me during anaphylactic shock. I have purchased the instructional DVDs so my family can learn to perform it in case of fire ant or wasp stings this summer.
- Twice monthly chiropractic treatments. I firmly believe chiropractic care is essential for overall health. If the spine is not properly aligned, the body is not operating optimally. My chiropractor specializes in a program called Total Body Modification (TBM). TBM is another form of acupressure work (dealing primarily with the acupressure points on the spine) which can treat specific symptoms as well as support the operation of full body systems. I use the most basic TBM techniques for every acute allergic reaction at home, and have Dr. Frieden do the more complex, fancy-schmansy stuff in her office during my visits. Last October, I told her of my anaphylactic reactions to every little thing. She performed a specific TBM sequence, and since then I have had significantly fewer and less severe episodes of anaphylaxsis.
- Regular at-home BioSet and TBM treatments. These acupressure treatments slow or stop reactions very quickly. It's like pressing a "reset" button on my body. It's difficult to explain what it is or how it works, but I love my sister's take on it. After having a systemic reaction to Chinese food, she asked me to treat her even though she isn't much into my hippie ways. She came over to the house and after the treatment, she commented, "That is some weird crap, but I feel a lot better!"
- Nutritional therapy as directed by nutritional therapist, Jennifer Nervo of the blog 20 Something Allergies. I discovered her blog in September 2012, and have followed her ever since. Her Baby Steps to Better Health series helped me a ton in the early days of my illness. For 18 months, she has assisted me as I have fumbled and bumbled about in an effort to get food safely into by body. She is now directing that effort. We've only just begun the nutritional protocol, but I have been implementing a few new-to-me concepts for several weeks now to which I have responded quite well. Jennifer understands how food works for the body, how the sensitive body responds to food, four day food rotation cycles for allergies, low histamine diets, and how to target autoimmune and mitochondrial disease with a specific nutritional approach. She knows each patient comes to her with individual needs, and she tailors her knowledge to fit those needs. I plan to post about my experience after I make it through the second rotation cycle early next week.
- Healthful miscellany:
- Rest and refusal to feel guilty about rest
- Sunshine and fresh air as often as weather and health permit
- Humbly and gratefully accepting help from others
- Avoiding triggers (i.e. staying away from crowds and uncontrolled environments; avoiding foods which make me sick; letting others handle and wash new clothing; having Brandon screen all of my mail for scents and chemicals)
- Wearing a double mask any time I leave my home. It's social suicide, of course. It earns me lots of stares--some curious, some dubious--and very few hellos. Children are afraid of me. But it keeps me alive and mostly well.
It's a tug of war. Gratitude and desire. Contentment and fury. Surrender to the Lord and defiance of the Enemy. The rope must remain taut or I fall. It's exhausting and impossible apart from Christ. But through Him, I can do all things. He is the strength of my resolve, the power behind my work, and the song in my heart.
"Unless the Lord had been my help
my soul would soon have settled in silence.
If I say, 'My foot slips,'
Your mercy, O Lord, will hold me up.
In the multitude of my anxieties within me,
Your comforts delight my soul."
-Psalm 94:17-19