I had lunch the other day with a friend who wanted to eat at a steakhouse. He had been in the hospital recently and had his mouth all set for a big, juicy steak. He seemed a bit disappointed when I refused the warm bread and then only ordered a baked sweet potato and salad. I explained that I hadn’t been feeling well and was still amid a lupus flare. It reminded me that I had promised to do a post a while back on the paleo diet. Digestive problems are very, very common and the cause of these issues can vary. I’m not claiming that the paleo diet cures any condition! Today’s post is simply a little something for people to read, which may or may not be helpful with their own personal journey to be well. I post it here under Medical Issues since it is part of my own medical journey. If you are one of the lucky ones who can eat anything you want, just stop here. You won’t get it and you’ll be totally annoyed!
I’ve always had digestive problems. I love food, don’t get me wrong! I wish I could eat everything I wanted to, but all too often, I’m left feeling like I just don’t digest my food. I’ve tried digestive enzymes, probiotics, fiber, dairy free, gluten free, lowfodmap, eating for my blood type, even seeing a doctor! I truly believe that each person needs to try different things and see what works for them.
For a long time, I thought that wheat and dairy were the problem, but after going dairy and gluten free and still having issues, I decided to combine some different things, which essentially is paleo. For me, I feel best when I avoid all grains. So, what do I eat you ask? I eat a very natural diet: fruits, vegetables, meats, nuts, and, yes…dark chocolate! I avoid dairy as much as possible (it makes my cystic acne worse) as well as a few high fodmap foods like garlic and onions. I do occasionally eat some wheat, but my slowed digestion reminds me that I cannot do that too many times in a row. I minimize sugar and notice fructose makes my gut very, very angry! (This ingredient can even hide in some so-called healthy beverages.)
For breakfast, I may cut up apples, sauté in coconut oil, and then add that to bananas, almond butter, almond milk, and sprinkle cinnamon on top. (Recently I’ve tried gluten free oatmeal soaked in almond milk and a tablespoon of good yogurt, combined with strawberries. It’s not paleo, but occasionally, I can tolerate it and it’s delicious!) Sometimes I just make scrambled eggs with any combination of vegetables mixed in. No toast! For lunch, I love any leftover veges from the day before or I’ll make a big pot of butternut squash soup and eat that over days. When I made this soup recently, I toasted the squash seeds and sprinkled them on top. I also love homemade pesto (made without garlic) on top of this soup. One of my favorite lunches is cut up leftover cold chicken along with any veges in the fridge like celery, grapes, strawberries, and almonds or cashews on top with a little olive oil and balsamic vinegar. Dinner is simply any meat along with more veges. I don’t like red meat too often, but I do eat chicken and LOVE salmon! A bedtime snack may be a cup of tea with some cut up fruit, avocado, and/or a handful of nuts, and maybe a piece of dark chocolate. I had a zucchini to use up and made some gluten free dark chocolate muffins which are in my freezer. I’ve been having some trouble staying out of them! So, as you can see, you must enjoy life also so I don’t feel guilty for indulging in treats I love sometimes.
I’m hoping the paleo diet helps to decrease inflammation and ease joint pain over time for me. Time will tell. At the very least, it seems to calm my sensitive digestion system. Sometimes eating out can be challenging and I can feel a little self-conscious when people wonder why I might not be eating much. I’ve learned to not worry about that and just try to enjoy the moment being with others. What about you? Have you gone to drastic measures to enjoy food again?
About a month ago, I wrote a little bit about a recent setback that my daughter suffered due to our broken health care system. At the time, I was too tired and angry to share the details, but I did want to share our experience in the hopes that it might be helpful to other EDS Mamas out there. When you have a child who relies on many medications to function from day to day, in the back of your mind is the concern that maybe one day, accessibility to any one of those medications might become restricted. Now, I’ve come a long way in trust and peace in my life, so it’s not like I lose sleep worrying about this; it’s just a reality that it might possibly happen.
Well, this is exactly what happened when the health insurance company informed us that they would no longer be covering one of these medications for our daughter. At first, they called and said they would be switching her to another form of the same medication (no problem here) and then we received a letter in the mail stating that before they gave approval for this, they were requiring her to try two other drugs from a list of some very scary medications (BIG problem here). Now some might say we should just pay cash for the medication they were now withholding. Not so simple. To make a long story short, our daughter had to jump through all the hoops and suffer for several weeks until they finally approved the medication we needed.
Some might say that this is what insurance companies must do to control cost. Nope! This new medication is much more expensive than the one she had taken for years. Plus, we had more doctor visits to get through these weeks, including a trip to the Emergency Room! (That is a whole other post to deal with anger from that day.) Doesn’t seem like a smart financial move for the insurance company.
I can see now why some who do not have a person to advocate for them would just give up dealing with the insurance companies altogether and resort to other forms of medicating. When you have walked a similar path, you can understand another person's pain, frustration, and the choices that are made.
As I prayed about the anger I felt as I watched my daughter suffer again now in her life, God reminded me that He was still there fighting this battle for me, that He had a plan, that somehow, He was working for our good, and that just because I was angry, it did not give me a right to sin out of that anger. I also was fully aware that when I harbored anger, it just hurt me and those around me. I could be thankful in the moment that we had a doctor who was just as frustrated as we were that he was not in charge of his patient’s care, but that someone behind a desk on the other end of the phone was making those decisions, someone who had no medical background at all and who did not understand what was best for this patient. (Our doctor hardly ever deals with insurance, but in this case, he had a heated conversation on our behalf with the health insurance company.) I wrote a heartfelt thank you note to this doctor and it comforted me at the time to see there was still good to be found.
One thing that was very helpful even though the insurance company said it would not change anything, was to file a grievance with them. The paperwork they sent us said we could even request an expedited or emergency (3 day!) review since the length of time it would take to review our grievance would interfere with our daughter’s full recovery (she was falling into a flare which could have lasted months) and because it was delaying treatment for severe pain. This is where an EDS Mama comes in because the patient may not have the energy or clear thinking to advocate for herself. (My heart hurts for chronically ill individuals who have no one to help them. These are the ones who get lost in the red tape.) As soon as I faxed the expedited grievance, I received a phone call the next morning about 7:15 am. They were granting our request and I broke down on the phone. My only regret is that I had not filed the grievance sooner.
Another thing that kept me focused was to keep my eye on the prize. I knew that if we could just jump through these senseless hoops, that in the end, we would get to the medication that was needed. I only prayed that along the way, the damage would be minimal getting there. Each day, it was hard to see my child suffer with severe pain again, which we had not experienced to this extent for several years. She regressed to using a wheelchair, barely slept for weeks, could no longer manage her own medications, and had to withdraw from her college class.
Today, I sent a follow up letter to the insurance company with the motivation of advocating for all patients. I surely hope it will not fall on deaf ears, but that it would spur more consideration to the well-being of the patient. I’m afraid that what we went through could be a reality for you as well one day, dear one. Our health care system does not always work for the best interest of the patient. The comforting thing is that GOD DOES. He is always working for our good because He is ALL GOOD! Romans 8:28 NIV says, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”