I wrote the first part of this post about a month ago and never published it because I had hoped to be in such a better place and share a really positive one a bit later instead. As I learn about living life with this disease, I decided that I’m going to keep track of the negative parts too, because it’s important to me to track my journey as a whole.
Written April 20, 2017
People on the Paleo diet are annoying.
In my experience, conversations with them are 50% diet/meal prep, 40% CrossFit, 10% analyzing my plate of food and telling me how I’m slowly but surely killing myself one cheesy bite of pasta at a time. I will never be on the Paleo diet. Give me macaroni and cheese or give me DEATH!
Except now I am starting it.
Actually, I’m starting the Autoimmune Protocol, which is what I imagine would be the Mrs. Kim of diets: Strict, concise, and without all the party foods like dark chocolate, nuts, eggs, tomatoes, and the occasional glass of wine.
Why on earth would I deprive myself of all of my favorite things and become one of those awful people that talks about meal prep?
Today I received yet another insurance coverage rejection for my doctor’s medical treatment recommendation to treat my RA and lupus. That makes four.
We have hit wall after wall, and I am tired. Tired of hearing no and being quoted policy. Tired of being in pain. Tired of not being able to walk across Target without needing to sit down twice, and feel like my legs were hit by a truck once I reach the car. Tired of saying to my daughter, “Sorry honey, I can’t…” Tired of needing help constantly. Tired of not being able to hold a full tea kettle. Tired of a shower taking the same amount of energy that a 3-mile uphill hike with a toddler on my back used to take.
I need something I can control, so I am jumping on the Autoimmune Protocol (AIP to those who are hip and in the know) train. I admit I am skeptical because sometimes it feels like nothing will help me feel normal again, and diet seems like such a simple solution to a complex disease. However, I am optimistic based on so many success stories I’ve read and recommendations from actual people I know who are similarly afflicted.
I also believe with my whole heart that everything happens for a reason. There has got to be a reason for all these obstacles, and maybe–just maybe–my symptoms can be controlled a bit by something I can do without permission from a large corporation. Maybe not.
Faith is not something I often discuss openly with people I don’t know well because I fumble with my words and feel like I come across as naive concerning my belief in the Bible. I am also deeply saddened by the assumptions often made about Christians, especially in the current political climate. These are personal attributes about which I feel extremely convicted as I write this paragraph, but I wanted to share the truth.
Since I began struggling with my health, my faith has been on my mind often. Isn’t that the case when we face something difficult? People are always telling me that they will pray for healing and pray for me to remain in good spirits. It is incredibly kind and I am humbled and grateful, especially because I often struggle with how to pray for healing.
Since January, my prayers have been focused on getting my diagnosis and treatment quickly. It’s been five months of waking up knowing my day is going to consist of hobbling around my house in serious pain and total exhaustion. I take comfort in knowing that no matter what happens with further appeals, everything will be approved by May 28th. That’s in a little over a month, but it feels so far away.
Written May 25, 2017
This past month has been difficult, but my current state of mind can be defined in a single word: grateful.
I am grateful that the AIP lifestyle has given many people control over their disease. When I began, I committed to following it completely and did not “cheat” once for three weeks, which I realize is not a super long test phase. I tried to capture the spirit of the lifestyle by leaning on my support system and filling my body with the most nutrient-dense foods I could, eschewing every possible inflammatory cuisine. I wanted it so badly to work because my current steroid dosage is starting to have delightful side effects like acne, hair thinning, and painful breathing.
However, my doctor felt it best I not be so restrictive in my lifestyle. Since the onset of my disease, I’ve been losing weight at an alarmingly rapid rate, (not my least favorite symptom, mind you) but on the diet I was consistently losing another 1-2 pounds per day and my pain and exhaustion were very noticeably increasing after the first week. I am absolutely in support of people doing what works for them with their autoimmune disease, but this was not the way for me to go. Still, I am grateful I tried and grateful I’m not wondering if I’m standing in the way of my own health.
I am grateful for my support system of mom friends and know I am beyond blessed to have people who care for me, bring me laughter, coffee, and food on really bad days, and help pick up all the toys in my living room. There are a lot of toys in my living room.
I am grateful for my husband who holds my hand when we walk anywhere at my snail speed, does the dishes every night because they’re the worst, takes me on dates where we get a couple beers at West 6th like everything is the same as it’s always been, and helps me wash my hair on days where my arms don’t work.
I am grateful for both sides of my family–the born in and the married in–who always check in, whether it’s over FaceTime or in person by driving up and bringing diapers, conversation, and hugs. And adorable outfits for Ella.
I am grateful for my sweet Ella who spends every day snuggling and playing. I am even more grateful that she came into this world before any of this happened and before the ability to have her was closed.
I am grateful for this book that has helped me in my daily faith crises and my prayer life.
Finally, I am grateful that there are three more days until I can begin the treatment my doctor has been trying to get approved for me since February. Three tiny days. I realize that there is a chance that the weekly injections will do absolutely nothing, and we will have to try something new, but now, since the ridiculous “trial” is over, I have the freedom to try pretty much anything my doctor thinks will help.
Three tiny days.