Putting My (Inflamed) Foot Down

via Unsplash
via Unsplash

It’s been a busy last few weeks while I’ve been trying to get things rolling again. On top of editing, writing, and marketing, I’ve also been having trouble with my arthritis.

My joint pain is migratory, which means that it can affect any and every joint, often at different times. Sometimes it decides it’s comfy and moves into a particular joint for the long haul. For the last couple of years, I’ve had a lot of trouble with my right hip. Nothing was ever really done about it, despite the many specialists I saw for it—including my rheumatologist. I basically went ’round and ’round the medical merry-go-round—which is nothing new.

Throughout the last decade, this has been my experience over and over again.

So when I started having trouble with my big toe on my right foot, of course I totally, naively thought things would be different this time. After all, my rheumatologist diagnosed me with reactive arthritis last year and started me on treatment. I’ve been taking 1,500mg of Sulfasalazine every day for several months, but it really hasn’t made much of a difference. Lately, my joint pain has changed from a deep ache to an almost bruised feeling on top of the ache.

When I went to my rheumatologist for a followup, I let her know about all of this. Since she’s leaving the practice this summer and her spot is being filled by another rheumatologist, I figured we’d probably come up with a transition plan. I asked her about trying something else, and she said she wanted to continue the SSZ. Since there were periods of time when I’d stopped taking it for one reason or another—insurance lapse, hospitalization, total brain fog—I was willing to give it another shot.

She didn’t seem too concerned about my toe, though, and sent me on my way. No transition plan. No mention of trying another DMARD.

Doctors are overbooked. I know this. It’s usually prudent to stick to just one issue during office visits, otherwise things get lost in the midst. So I called the office and spoke with her medical assistant, reminding her about my toe.

I can barely bend it, and definitely can’t put weight on it. It feels just like my hip did for all that time. The thing is, my hip didn’t just magically stop hurting. It’s still there. The pain in my toe makes my hip look like a walk in the park—which I’d never imagined could feel any worse.

This is how it goes. I get used to one particular pain level, only to have my body say “Challenge accepted,” and throw something else at me.

My rheumatologist’s solution was Aspercreme with lidocaine.

Instead of facepalming and arguing, I replied that I’d give it a shot. Her assistant told me to call back if it didn’t work.

Here’s the thing: I have an entire box full of things I’ve tried that didn’t work, or worked a little but then stopped. I’ve got lidocaine patches somewhere in my house that I tried on my hip. I have half empty tubes of Voltaren. Tiger Balm does help quite a bit, but if I reapply too often, it loses its effect.

My rheumatologist is very by the book, with a light touch as far as treatment goes. I really appreciate the fact that she doesn’t send me off loaded up with prescriptions. I once had a primary who did just that, and it almost killed me because their office didn’t pay attention to interactions and I blindly trusted them. But it’s starting to get really frustrating that, with every new achy joint, I have to start from square one with her.

It never goes this way:

“Ah, yes, another trouble joint. Well, we’ve tried X, Y, and Z in the past, so let’s not even bother with that. Let’s move up to Plan B and not waste any time.”

I understand why she does it. But I almost wish she was a bad-ass like the attending in the ER who smashed the inflammation in my body with a super dose of Prednisone and a shot of dilaudid to tide me over while the steroids got going.

Instead, I had to play the game. Every chronic pain patient is familiar with this game. I already knew Aspercreme, Icy Hot, etc don’t do much of anything for me. But I still had to do things her way. I called back and let the office know that it didn’t work, and my rheumatologist personally spoke with me and told me that she wanted to try a week of Mobic (an NSAID). If the Mobic didn’t do it, she told me, she’d have me come in for a cortisone shot.

Thankfully, this was a prescription so my insurance covered it. Still, I’d already tried Mobic in the past, several times. It doesn’t work. But again, I did things her way because she’d told me she’d give me the cortisone shot; I knew ahead lay some kind of relief, even if I had to spend another week alternating between icing my toe and wanting to just rip the damn thing off my foot.

I did the Mobic for the week and, as expected, it didn’t help.

When I called the office, I was told that they would speak with my rheumatologist and find out when she wanted me to come in. Because I was still in editing land and doing a whole bunch of other marketing/administrative things (and I don’t get a signal for my phone inside my house, sigh), I missed the callback. I didn’t get to listen to the voicemail until Saturday morning. It was not good news.

In the voicemail, my rheumatologist’s assistant told me that she wants me to see a podiatrist and that I have to set up the referral myself. There was no mention of my cortisone shot.

I cried for a good solid thirty minutes, and then on and off throughout the rest of the day.

I know that steroids are controversial in the chronic illness community (for both patients and doctors), so I really don’t want to hear “That’s what you get.” My issue is, I was told I would get one. I was promised relief. Instead, I was passed off to yet another specialist. This has been the pattern for the last nine years.

I’m tired of this. I’m tired of feeling like my doctors either don’t believe me or don’t know what to do with me. I get that my rheumatologist is leaving the practice and probably just doesn’t have the time to squeeze me into her schedule before she goes. I get that. I really do. I’m crazy busy, too. But what I don’t get is why I had to go through all of this—the office visit, the phone calls, the Aspercreme, the Mobic—when I was only going to be handed off anyway.

I’m sorry, but I won’t be seeing a podiatrist.

I have autoimmune arthritis. Next month it’ll be my elbow or my hip again. I shouldn’t have to see a different specialist for each body part, going through the entire thing all over again: the consult, the battery of tests, the waiting, and then maybe some treatment. Emotionally, I can’t continue coping with the strain of this pattern. It’s exhausting. Physically, I can’t wait an entire summer before I get this taken care of.

Summer is supposed to be for getting outdoors, doing what little physical activity I can. It’s not supposed to be like winter, where I sit on my couch with my pain meds and heating pad, missing out on family functions.

I’ve been doing this for almost ten years; I’ve been doing everything their way. Only when I push back—insist on treatment—do I ever get anywhere.

So, this afternoon, I called my rheumatologist’s office again. I got the front desk’s answering machine (it’s Monday, so they must be crazy busy after the weekend), and left a message asking for clarification and repeating that I’d been told that I would be able to come in to the office for a cortisone shot.

And I’ll call again tomorrow.

And the next day.

Every day, if I have to.

I’m putting my foot down (but with all of my weight on my ankle, off my toe, of course).

I think I’ve patiently played the game long enough.

Published by

Elizabeth Barone

Welcome to The Crazy Chronicles, the personal blog of Elizabeth Barone. I primarily write contemporary New Adult romance and suspense, but I also write YA under another pen name. This blog is named after my novel, Crazy Comes in Threes, and follows my publishing journey. I blog about everything from my latest work in progress to living with chronic pain.

7 thoughts on “Putting My (Inflamed) Foot Down”

  1. A friend of mine, who is 70, flew across the country to a clinic in St. Louis and had stem cells harvested from his blood injected in his knees to deal with his crippling arthritis. He claims that by the time he returned to California, his knee pain had improved more than 50%, and the doctor told him it would keep improving for two years.

    I’m still thinking about it but have my doubts.

    1. Wow! There’s a lot of promising results from stem cell treatments. Honestly, I’d try anything at this point—but first that would require my doctors to actually take me seriously. It’s funny because after almost a decade, I could’ve gone to school for and completed my residency for my own medical degree by now.

      1. The reason I have some doubt is that I researched stem cell joint therapy and learned that the FDA hasn’t approved it yet. But that doesn’t mean it doesn’t work.

        If it works as my long time friend said it did for him, then the challnege is to make sure you find a clinic that does it right. Maybe he did his homework and that’s why he went to St. Louis, because there are clinics in California that do this therapy. One is over in the South Bay, south of San Francisco.

        Because stem cell transplants for cell therapy haven’t been approved by the FDA, insurance companies won’t cover it. And it isn’t cheap. My friend also told me that if he decides to have a second treatment, he’s going to go to Sanovive Medical Institute in Mexico for it instead of St. Louis. If I ever decide to do it, that’s where I’d go too because I’d trust the scientist that founded it, Dr. Myron Wentz.

        http://www.sanoviv.com/about-sanoviv/dr-wentz-founder/
        http://www.sanoviv.com/

        1. Ah—yeah, that makes perfect sense. Hopefully the FDA will move forward with approving it, because it can help so many people. We (the U.S.) definitely aren’t at the forefront of medicine anymore, which is great in some ways because it should incite competition in us that would lead to even more innovation. However, it doesn’t seem like we’re really making medicine a priority these days. Then again, that could be the cynic in me.

          1. The FDA does slow down the process of approval for new therapies and medications but there is a reason for that. All one has to do is look at the food industry to discover why the private sector must prove itself first when it comes to health care.

            If there was no approval process, it would be possible for anyone to sell anything for any amount to anyone even it it was sewer slush that the private sector medical provider claimed was a miracle cure. Before there was an FDA, this kind of stuff was happening all the time. Too many these days either don’t know why the FDA came into being or think it can’t happen again so let’s start cutting corners.

          2. Oh, of course! Checks and balances are always good. But there are plenty of cancer treatments, for example, that have been researched with fantastic results but are still pending with the FDA.

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