Wake up call

Thirteen days ago I pulled something on the right side of my back while deadheading some flowers. If you’ve ever put your back out, you know how that is: You’re doing some mundane, every day task and your back seizes up.

Twelve days ago I had a private skating lesson, in spite of my back pain. I felt better after skating, though I couldn’t even begin to swing my leg up to try a baby jump.

Nine days ago the pain on the right side was waning, but pain on the left side increased. I’ve been dealing with that pain for more than a year. I’d been told it was my sacroiliac joint. It hasn’t been a big deal. I went to one session of physical therapy for it, but the experience was not positive (The therapist complained to a colleague, in front of me, that I was his 4th diagnostic for the day, and basically said “good luck” when I asked about how to schedule regular sessions.) I went to my group skating lessons that morning, but I left halfway though the second class. I just didn’t feel well, and I couldn’t seem to make my body do what it usually can. That afternoon I made an appointment to see a doctor about the SI joint pain and talk again about physical therapy.

Seven days ago I was functioning, but it was difficult. While I was cleaning up the kitchen my daughter told me to sit down and I snapped at her that I was fine. “You’re moaning,” she said. “You’re not fine.” Cane let her know that I was not aware of the moaning. (I wasn’t.)

Six days ago Cane and I moved my son to Seattle for school. The ride from Portland was challenging; I couldn’t find a position where my back didn’t hurt. The actual moving wasn’t so bad, and I didn’t do any heavy lifting because of my back pain. Five days ago we met my parents for lunch on our way home. I was uncomfortable, but was able to get through the lunch without showing it. I was sure I could manage for two days until I could get to the appointment I’d made.

Four days ago I woke up after a night of pain-interrupted sleep and called to see if I could get a same-day appointment because I couldn’t walk or sit without unbearable pain. There were no same-day appointments available with anyone, so I was advised to go to urgent care, an excruciating experience which now feels like the beginning of a tumble into a rabbit hole. I don’t think I’ve landed at the bottom of it yet.

I had appointments with 4 different doctors in 3 days. In addition to urgent care, I’ve been to an office for routine appointments and the ER. I’ve been prescribed 7 different medications, one of them an opioid. I’ve not yet been able to talk with my primary care doctor; I have a phone appointment scheduled for August 3. I have a referral to a spine clinic and an appointment for an MRI. I’ve been mostly on my back, but yesterday I finally started to get better rather than worse. I can now be upright for 5-10 minutes at a time. I try to do that every hour, as I’ve been told that movement will help me. I’ve been told that it could take weeks to months to recover my previous level of functionality/pain.

All I know right now is that I have “degenerative disc disease,” severe in some places and mild in others. I have “exaggerated lumbar lordosis” and “mild degenerative retrolisthesis.” I have “diffuse facet arthropathy.” My sacroiliac joints–originally deemed the problem by the overworked and unprofessional physical therapist–are “unremarkable.” No medical person has talked with me about what any of this means; I know what I do only because the x-ray report is in my online healthcare portal. What I can surmise from Dr. Google is that I have some form of arthritis.

I suspect that this will end up being one of those “before and after” moments in my life, a line of demarcation between one way of being and another. I’ve known for some time that I need to live differently in order to be healthy. I’ve taken steps toward that; I retired (earlier than planned), I began skating (regular exercise), I’ve made some dietary changes. With arthritis (as with migraine and fibromyalgia, two other diagnoses I’ve been given), there is only management, no cure. Stress, sleep, and diet are all factors in managing the condition. I’m pretty sure I’m going to need to bump my efforts up exponentially.

As I lay in bed unable to find a pain-free position, unable to roll over without using my hands to support my hips, not knowing what was happening or how long I might be in such a state, I could not stop thinking about how fortunate I am. I have access to healthcare, imperfect as it is. I’m not missing work and don’t have to worry about getting back to work. I don’t have young children I need to care for. I have family who have been able to care for me. (I’ve been told I’m not terribly good at receiving care, but I’m working on it.) Don’t get me wrong: This situation is bad and scary, but in different circumstances, it would be catastrophic. I’m grateful it’s not worse.

I don’t know if I’ve even begun to really process this, but it’s shaken me. It’s challenging my sense of self. It’s humbling. It’s filling me with gratitude and questions. Pain is a beast. I suspect that taming it is going to be my new full-time job.

9 thoughts on “Wake up call

  1. Kate says:

    Oh Rita, I am so sorry. Jesse has only two discs in his whole back that don’t have some form of degenerative disc disease and has lived with it for over 18 years. His primary goal when he found out he had this issue was to avoid having discs surgically fused together in order to keep mobility. He hasn’t always been pain free, and he’s lost some height as his discs have naturally fused themselves, but he’s managed his goals so far. (We had another friend who had surgery for his and swears by it so I’m not advocating). Things that have helped him the most during that time (feel free to ignore especially as you’re in an acute situation instead of managing a chronic situation):

    TENS unit: some sort of electric impulse machine. He used this a lot a few years back, but doesn’t find it as helpful now.

    Acupuncture – he started going once a week about two years ago, and now goes every 3-4 months for a tune up. Doing this made it possible for him off to get the opioid or “opioid adjacent” medications he’d taken for years.

    Pilates – he goes to a personal Pilates instructor once a week. He says he used to feel sore for the three days after her, but now feels sore the day before he sees her and like a million bucks for the day or two after her.

    Mixing up movement. If he’s been standing a lot – setting 10 minutes sit, if he’s been sitting, he schedules a walk, or stands at his desk.

    A mattress that is as hard as a rock. (Not literally quite that hard, but close. We are VERY firm mattress people)

    I hope you get some greater relief soon, Rita. I’ve never experienced it personally, but I’ve seen first hand how horribly difficult it can be to deal with and I hate that for you.

    • Rita says:

      Thank you for all the great information. It’s both encouraging and helpful. I’m pretty sure this is not a new development–I’ve had back pain for years, although nothing like this experience. Gotta say, the idea of Pilates is…oof. I hate Pilates. 🙂 Maybe yoga?

      I had quite a bit of improvement yesterday (was able to move around for nearly 40 minutes yesterday evening), and I slept through the night without needing to take meds. So, crossing my fingers and feeling hopeful that I’ll soon be back to something like normal functioning. Who knew how much I’d want to be able to go grocery shopping?

  2. Marian says:

    I’m so sorry you’re going through this, Rita. Sending you my best wishes and hoping you find lasting relief soon.

  3. TD says:

    Hello Rita,
    First of all I’m sorry that you are having such intense pain. And second, I’m hoping that you are able to sort out which of the seven prescriptions are beneficial and which might be causing damage of side effects. That is a lot of different doctors and different reports in your portal with only you and Dr Google to sort out!

    I have unfortunately found similar disappointments with health care systems for over twenty years. Sadly, there are very few doctors who will actually take their time to explain and determine a treatment plan together. (I had a few who did). The doctor that I have currently during the pandemic does not, sadly.

    And I have yet to find any assistance or doctor who tells you the actual expense that one will eventually pay out of one’s own pocketbook as systems are too complicated for anyone to know.

    It seems to me that most of my eventual diagnosis all determine that there is “no cure, but it becomes a condition that is treatable.” (Sigh) And pain management is a skill that is to be learned as with time.

    Then I find myself as the lab rat testing prescriptions… and feeling like a pin cushion with my arm where they draw blood monthly looks like I’m a heroine junky. And I feel so helpless that I agree to it all because “the pain.”

    I don’t know anything about the condition that is described in your portal, so I have no knowledge of experience to offer. I do empathize with sympathy!

    How did you decided which of the seven prescriptions to take? And did you take the all together? I would not have been able to do that! Scary!

    • Rita says:

      Hi TD,
      Thank you for your care and concern; I’m doing much better than I was told to expect, and for that I’m quite grateful. I am very careful with the medications (reading the instructions and cautions repeatedly) and take notes as to when I’ve taken them. I also set alarms on my phone to remind me when I need to take something. Right now, I’m mostly off them, which is wonderful. I truly needed them, though, and I’m glad that I have access to them if I need them again (which I probably will). I’ve also had extensive experience with doctors and medical systems. I know that the people in them are like the people in so many of our support systems: overworked and under-resourced and doing the best they can. I’ve learned that I have to be assertive and advocate strongly for myself. I feel fortunate that I understand how things work, mostly. And that I have strong literacy skills. And that I am a white, middle-class woman, as we get listened to more than those who are not those things.

      • TD says:

        It is so nice to hear from you, Rita! Especially to learn that you are feeling much better than expected by all the various medical care people in your circles.

        It seems to me from reading your blog for so many years that you have been successful with building a wonderful support system (no matter the color of your skin or ethnicity that you identify with mostly or even sexuality).

        My own life’s journey is / has been very interestingly diverse and constantly changing, living within my own terms of importance to me. I have never wanted to be someone else. I love who I am. I think the fact that your journey is / has been so different than mine is truly why I enjoy reading your blog so much!

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