(This is mostly an account of my medical situation these past few months. I’m trying to wake my brain back up and get into some of the pieces I’ve been wanting to write, but it felt like I had to get all this out first.)
A chronic medical condition can make small burdens extra-heavy. It can also make small victories extra-joyful, but sometimes it takes a long time to reach them.
Since September, I haven’t had a clear way forward for one aspect of my post-surgery treatment. My surgeon recommended both physical therapy and pain management: physical therapy to loosen up the muscles and fascia (connective tissue) that had gotten tightly knotted in response to the months of endometriosis pain, and pain management to help me find a painkiller schedule that worked for my needs, with the possibility of a temporary nerve block injection if any nerves seemed to need a “reset.”
Physical therapy has been great. My therapist and her graduate assistant have showed me that the still-very-painful area in my lower abdomen is a knotted mess of muscles, fascia, and nerves. Sometimes, if certain nerves are exposed to pain signals for long periods of time, the fascia will apparently sort of protectively contract around them.
My PT has been slowly training the painful area to accept gentle touch, as well as stretching out the fascia all around the big bad fascia-nerve-knot. I made a lot of progress the first two months, but then scheduling and illness got in the way, and I haven’t been able to go as consistently since the end of October. For a while, though, I could go up to a week without taking any painkillers other than Advil, which was a huge improvement.
Around when I got started with physical therapy, I also tried to find a pain management clinic in College Station. The referral process was complicated, and the clinic apparently had some issues with their fax machine (my surgeon tried to fax my records over eight – yes, EIGHT – times; the seventh time, the girl at the front desk said, “Hmm. I wonder if it’s OUR fax machine that’s the problem?” to which I barely restrained myself from replying “YA THINK?!?!”). They also would not follow up with me when paperwork was in process, so two weeks went by when I thought they were processing my referral and insurance but they actually had not received any of the information.
For a while, I thought I might not even need to see a pain management doctor, because physical therapy was going so well, and because my PT had said that waiting a while to see if I needed a nerve block injection would be better than getting one immediately (because she didn’t want to push too hard on numbed-up tissue and inadvertently cause more damage). Within the past month, though, my pain has flared significantly, and my PT has said that a nerve block could help me, particularly by shutting down my pain receptors for long enough that I could start to do some strength-building exercises and better handle the pain if and when it comes back.
I’ve been in a depressive cycle since October. I’m coming out of it now, but one side effect of depression for me is that my problem-solving capability drops way down. It took me weeks to come up with the idea of asking my PT for an official referral (since apparently this clinic, for whatever reason, was not capable of receiving the referral from my surgeon), and then another week to get the answer that while my PT could offer a recommendation, she could not perform an official referral. My next option was to go through my primary care physician, but at that point it was the week before Thanksgiving and all doctors were either booked or out of town. I ended up going to urgent care and receiving a referral from them.
After another week, during which I discovered that the clinic had, in fact, actually received the referral from urgent care (miracle of miracles!), and had also received the detailed recommendation from my PT, I learned that the nurses would then have to decide whether the clinic could help me. This surprised me, since when I had initially called in September, and outlined the specific treatments I was looking for, the receptionist had said that they do offer those treatments and can usually get patients in the day after a referral is received.
So I called last Monday to see if a decision had been made. It had. They couldn’t help.
I was furious. They told me that they didn’t take over prescriptions for painkillers (which is one of THE MAIN things a pain management clinic typically does, so I don’t understand the reasoning there), and that they did not offer nerve blocks in the part of the body where I needed it (despite me asking if they did this type of treatment during our very first phone call, and receiving an affirmative answer). If they had only told me in September that they could not help me, I could have spent the past three months working with another clinic, either locally or in Austin or Houston, and receiving the treatment that I needed.
I spent the next several days trying to find a pain management clinic somewhere within a few hours of College Station that would 1) take my insurance, 2) offer the treatment I needed, and 3) be able to fit me in within a week or two. I finally found one in Austin, and they’ve been fantastic. I saw the doctor on Thursday. He gave me several prescriptions, including some that I hadn’t tried before, and scheduled my nerve block injection for the 19th.
It wasn’t until I got back to my parents’ house in Bastrop that evening that I realized how much of a burden this had been. I felt lighter than I had in months. My head felt clearer, I had more energy, and I had hope. The months of not knowing whether my pain would be taken care of, or where my next prescription was coming from, had worn me down far more than I had realized. There’s a lot of shame associated with asking doctors for painkiller prescriptions, even when the painkiller is as mild as Tramadol (which has opioid ingredients and is a “controlled substance” but is classified as non-narcotic). Most doctors who aren’t pain-management specialists are hesitant to refill painkiller prescriptions more than once, because of the dependency/addiction issues. Pain-management specialists, however, are better equipped to make dosage decisions over a more extended period of time.
While I was waiting for the local clinic to get their act together, I had to ask my surgeon and two urgent care doctors to refill my prescription, and each time, I didn’t know who would take care of it the next time. As a result, I rationed my painkillers more than I should have, spending hours on my heavy-pain days not taking anything but over-the-counter medication (which barely touches this particular discomfort) and, as a result, barely able to leave the couch, much less accomplish anything around the house. The stress of extreme discomfort every day, combined with the shame of not being able to get more done and the fear of seeming like an addict whenever I ran out of painkillers all piled up into a huge weight on my heart and mind.
The pain-management specialist I saw on Thursday told me to stop rationing painkillers, because hours of pain take a physical toll on my already-weakened body. Of course, he understood why I had been trying to tough it out, but gave me a dosage that allows me to treat the pain whenever I experience it, instead of only during strategic times of the day. Tramadol can sometimes make me a bit sleepy, but it doesn’t knock me out like narcotics do, and usually, once it kicks in, I’m so relieved to not be in pain anymore that I get a burst of energy and get a lot done. Just knowing that I can manage my pain this way for the foreseeable future has given me so much optimism. It seems doable to embark upon our Great Decluttering Project of 2019, because I might actually be able to do one small task each day, instead of being confined to the couch and only attending to the most urgent responsibilities. Hospitality seems achievable, as long as I keep my expectations reasonable. And writing, for which my brain has not had the space since October, is suddenly possible again.
It’s amazing how much a seemingly-small change can make in my overall outlook.
Yesterday, I had a much lighter pain day, and I celebrated by tidying up the house, doing all the laundry (including sheets and towels), purchasing and setting up a few final Christmas decorations, and making a garland. I was hurting this morning, which made packing up for our trip to Bastrop pretty challenging, but I was happy to be able to leave a clean, decorated house, and to have the comfort of knowing that I could take a painkiller when I arrived at my parents’ house and feel better in an hour or two.
Keeping my pain under control means I can work to make our house not just livable but beautiful. It means I can handle work responsibilities without getting overwhelmed. It means I can even try to do social things every once in a while. And today, it means I can finish my first blog post in more than two months.
I am so, so thankful that God worked to lift this burden. And while the past few months have been really hard, I’m thankful for what they’ve taught me: how to share my burdens with others, even when I feel like I’ve far exceeded my “neediness quota;” how often I shame myself for things that are beyond my control; how much joy simple beauty can bring to my heart. I hope that next time I go through a rough time, I’ll give myself more grace and take advantage of the healing power of beauty, friendship, Scripture, and music.
I keep coming back to Jesus’ words in Matthew 11:30 – “For my yoke is easy, and my burden is light.” I want to learn to receive the light burden Jesus gives me when I am weary and heavy-laden, to trade in the fear that no one will take care of me for the faith that God will provide all my needs. He continues to prove himself faithful, even when I don’t have the energy for simple prayers. I want to grow in trust that he is caring for me even when I don’t see an immediate solution. And Advent is the perfect time to cultivate that trust: longing to celebrate Jesus’ incarnation, and longing for his return.
So many thoughts are still swirling around in my head, but I’ll save them for another post. Thank you to all of you who have prayed for me these past few months, particularly when I was so overwhelmed by the pain-management situation. God showed his care by providing his Body to minister to me. Some days I could not see that things would ever get better, but you held onto hope for me. So again: thank you.
Chataine's Song 