I’ve been meaning to write this down for a long time now. Telling this story is actually the real reason I started to blog. I needed a space to think through and write out what it feels like to watch my husband’s body fall apart and to see him suffer through intense chronic pain.
Hang on, here comes the kind of exposition only a mother could love. The links will take you to Brad’s blog, which was written in real-time from his perspective, in case you want to know more.
When I first met Brad, he looked like Jason Bourne. And I don’t just mean his look-alike face (although he does have that). He was really muscular, too. Working out and studying nutrition were Brad’s hobbies and he had the eight-pack abs to prove it. (Ladies, calm yourselves.) But the truth is, I don’t really remember any of that, I only know it from what his family has told me and from pictures.
Three weeks after Brad and I started dating (only about two months after we met), Brad was on his hands and knees cleaning his bathroom floor (I’m telling you, he’s a dream boat) and he felt a pop in his left knee. In the next few days, his knee and ankle began to swell. His doctor suspected a blood clot, so he had an ultrasound and went on coumadin to break it up. His ankle swelling went down, but immediately thereafter, his other knee began to swell the same way as the left. As the weeks went by, his knees alternated swelling as they both got stiffer and more painful. Brad had to give up or scale back all of his workouts to manage the pain and he lost about 30 pounds of muscle very quickly.
By the time we got engaged a few months later, Brad was seeing a rheumatologist who had prescribed methotrexate for him. The methotrexate gave him severe flu-like symptoms and high fevers. After he finished the three month course without benefit, he said goodbye to the drug and the doctor.
Then we got married. It was the best day. We prayed so much that Brad’s symptoms wouldn’t bother him (at this point, a little more than a year after his first symptom, it was very painful for him to stand for long periods of time, as he would be doing at the altar waiting for his radiant bride.). And God answered our prayers. See? You can’t even tell he’s been on his feet for hours, can you?
Soon after our wedding, Brad researched and found that some inflammation can be caused by food sensitivities. He had an extensive blood test to see what food substances might be causing a reaction. The list came back with more than 100 foods to avoid. We had to eliminate garlic, lemon, wheat, chicken, beef, most fish, some vegetables, some beans, and so many more foods from our diet for six months. All the other foods left to us (basically turkey, salmon, and bell peppers) had to be put on a 48-hour rotation, all the way down to the type of oil and spices we used. So if we had olive oil on Monday night, we couldn’t use it again until Wednesday.
I’ll be honest. The rotation diet was pure misery. We had to make everything–stock, tortillas, crackers, seasoning mixes, gluten-free breads–from scratch. It was very time-consuming to plan and track all of this, especially when our list of allowable foods was so small. We started using spreadsheets to note every bite that went into Brad’s mouth and track his symptoms and pain levels. We still do it (if anyone is looking for 617 days worth of meal ideas, let me know).
Eating like that did weird things to my head. It was almost animal the way I wanted to sink my teeth into a real slice of bread. We were so sick of cooking everything all the time; we craved a meal out, but couldn’t chance it. My episodic anemia came back (we couldn’t eat beef, spinach, broccoli, or kale) and bit me in the behind.
We quickly learned there’s more to eating than just filling your stomach. Many of the meals we made then were good and we still make them today, but for the most part, we weren’t satisfied after eating. I guess after planning out every ingredient down to the spices, making sure if you have cinnamon one day, you don’t have it the next, and spending (usually) hours preparing every element of the meal from scratch, there’s just not much left to enjoy about it. But, there was so much to be grateful for. We began each meal giving genuine thanks to God that we had a specialty grocery store nearby, that we had so many options still compared to the rest of the world, and that He provided food for us each day. That real gratitude is my favorite thing we’ve carried with us from the diet.
In the end, it didn’t have much affect on his symptoms, so we gradually added back the foods we eliminated. We’ve kept an awareness of what we ate, and still cook whatever we can from scratch using as many organic ingredients as possible. And we still try to rotate the major proteins, dairy, and wheat.
After the diet, we didn’t know what to try, so Brad went to a pain specialist and a hematologist to see if he had more blood clots. Neither doctor gave much insight and basically discharged Brad. After our bad experience with one rheumatologist, we were hesitant to go to another one, but his symptoms kept pointing that direction. Those six months felt like we were going down a rabbit hole. We didn’t know of anyone who had similar symptoms to Brad, we couldn’t find any hints online about what he could have, and we didn’t know if any doctors out there knew anything more than we did. I remember lying awake night after night after Brad fell asleep and just staring at him. I’d stare and pray until I started to cry, then I’d muffle my sobs while desperately crying out to God. To say I was angry at Him isn’t clear enough. I was definitely fighting with Him, or it felt like it. I remember silently screaming at our bedroom ceiling, trying to be heard because it felt so stifling quiet. I was angry that Brad was suffering. I was angry that we didn’t have answers. I felt very alone and I was so scared.
But I also knew He held us in His arms. All those nights, I always finally cried myself to sleep not feeling like He held me, but knowing He did. During the day, I felt less fragile, so I would read the Bible to try to figure out what was happening to me at night. When I read that He saves and records each tear we cry (Psalm 56:8), it started getting better because I started being grateful. Grateful that God saw, grateful that He valued my sorrow, grateful that He took notice, and so grateful that he knew. He knew I couldn’t sleep, He knew why I was sobbing, He knew what I was afraid of. And just knowing He knew made all the difference.
We started seeing a rheumatologist at the University of Iowa. He was caring, thorough, very Polish, and his eyes lit up when we pulled out our 1-inch thick spreadsheet of Brad’s medical history (we are nothing if not thorough). We loved him. He drained fluid out of Brad’s knees (two giant syringes full) and started him on prednisone, hydroxychloroquine, and sulfasalazine. Brad started feeling some better, partly because we found a doctor who seemed genuinely interested in figuring out what was going on in his body. I felt better because at our second appointment, the doctor introduced me to his internist as “the most caring wife in the world.” Obviously, he was a smart guy.
Brad spent this last year on the medications. As he weaned himself off of prednisone, his symptoms continued to get worse. He took his last dose about five weeks ago and since then, he’s had a monster flare-up. At last count, he had 33 distinct symptoms caused by either his illness or one of the medications he’s taking. It’s so overwhelming.
The worst part, besides seeing him in constant pain, is feeling like we’re being robbed of happy, normal moments. It’s not just that he can barely walk up the stairs in our house, it’s that his back is so sensitive I can’t put my hand on it to encourage him. It’s not just that he can only sleep one to two hours at a time because of the pain, it’s that he is so exhausted from not sleeping that he gets home from work and can hardly stay awake through dinner. It’s not just that he gets out of bed at 4:30 or 5 every morning because he’s in so much pain, but that he hasn’t woken up pain-free in more than three years.
This week, we head to the rheumatologist for an update. We’re telling him Brad is going off the prescriptions and asking if he’ll continue to monitor Brad’s progress while we try alternative therapies. We’re also going to see what’s called a “Lyme-literate doctor” or LLMD. This is a physician who recognizes Lyme as a chronic condition and who isn’t afraid to prescribe the long-term antibiotic therapy needed to cure it. We’re praying this week holds many answers for us.
Why am I posting this publicly? Honestly, it’s because I want your pity. Isn’t that pathetic? Chronic arthritis and Lyme can be such a hidden disease, and Brad especially tries not to burden people with how poorly he’s feeling. But it’s truly awful. I feel like we’ve managed or downplayed it for so long and now his symptoms are coming to a head. I feel like screaming out to the world that this is an emergency–my husband is falling apart and I can’t do anything about it.
Except pray. Prayer has become so important to me. I’m ashamed it’s taken this to make that happen, but it’s true. When I’m awake at night crying and praying, I imagine coming into the throne room of God as His daughter and pleading with Him for my husband’s health. The crazy thing is that’s reality. Prayer really does take me right to throne of God and the seat of His grace. And who is there to plead with me? The Holy Spirit. And who is there as proof of my right to stand boldly before God? My savior, Jesus. God is so good.
photo: Art of Light Photography