Tag Archive: Mayo Clinic

Is Vitamin D Making Me Feel Better?

This is the story of how I have turned into the crazy lady constantly telling everyone I meet to get their vitamin D level tested.

The thing about the vitamin D is that it could either be the cure I’ve been searching for, or have absolutely nothing to do with why I’ve been feeling better since about July. Either way though, I am feeling better these days.

Back in May, I went to visit a local weight loss clinic to try and lose some of the 60 lbs. I’ve gained since getting sick. While I was there they ran some routine blood work. And it turns out my vitamin D was low. Not like, “Oh, it’s just a little low, you should probably take a supplement” low.

My level was 6 ng/ml. It was literally the lowest the doctor at the weight loss clinic had ever seen.

To put it in perspective, the Vitamin D Council says it’s best to be between 40-80 ng/ml, while the University of Wisconsin recommends being between 30-80 ng/ml.

I had tested low before, like 19 ng/ml, but it was years before I suddenly woke up feeling like someone was stabbing me in the ribs. And I honestly don’t remember the doctor at the time impressing on me that it was any sort of an issue. I just figured it was like needing an oil change every 3,000 miles. Sure that’s the ideal, but your car isn’t going to just shut off if you wait until 5,000 miles.

So I told my primary care doctor about the results, and he and the weight loss doctor decided to put me on prescription-strength 50,000 IU vitamin D for three months, followed by a daily dose of 4,000 IU after that.

When I got home from my appointment, I looked through all my medical records — from Loyola University, the Mayo Clinic and the University of Wisconsin-Madison — and realized that not once had anyone thought to test my vitamin D.

I have literally had more than 35 blood tests, a handful of urine tests, and a more imaging than is probably healthy, but none of them were for vitamin D!

It turns out vitamin D is pretty important though, and has been shown to have direct links to chronic pain. It’s also not actually a vitamin, so much as a hormone. There’s all sorts of research on how low vitamin D can cause chronic pain, even specifically rib pain, which is what I have.

A recent study in The Pain Physician journal shows that, “Vitamin D, a hormone precursor essential for maintaining homeostasis of the musculoskeletal system, has long been proposed as an associated factor in CWP (chronic widespread pain). The most severe type of hypovitaminosis D, osteomalacia, features generalized body pain, especially in the shoulder, rib cage, and lumbar and pelvic regions.”

And another study from the American Academy of of Pain Medicine showed that, “The prevalence and clinical correlates identified in this pilot study provide the basis for the assertion that vitamin D inadequacy may represent an under-recognized source of nociception and impaired neuromuscular functioning among patients with chronic pain.”

In other words, if low levels aren’t the cause, not having enough vitamin D can make chronic pain more severe. And, low Vitamin D can also make pain medications less effective.

According to an article on the Mayo Clinic website, “patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication — nearly twice as much — as those who had adequate levels.”

So I was cautiously optimistic that getting my vitamin D levels back up could at the very least make my pain medications more effective.

But for the first few months, I didn’t really feel much different. I only told a few people about the vitamin D because constantly talking about possible cures is exhausting — everyone wants it to work so much, and then when it doesn’t you feel like you have personally failed at something.

So I only told my mom, my boyfriend at the time, and my best friend. My then-boyfriend was hoping for a miracle by day two. But alas, nothing. My best friend was hoping for a miracle by month two. But alas, nothing. And my mom, who I live with, wasn’t really putting her hope in it all. She had seen too many things not work.

But then, in July, I started noticing things. Like little things. Like I could go for a walk and not die afterward. And then, in August, I cleaned the freaking bathroom! Seriously, I did the floors, washed the mirrors and scrubbed the tub, all without ending up in the hospital!! And by September, I was even able to make the four-hour round trip trek to work without having to spend the entire next day recovering.

Slowly, but surely, I have started feeling better. I mean, I’m not cured. And I’m not holding my breath that I ever will be. I’m also completely aware of the fact that I could backslide at any moment.

And, I still take morphine on a daily basis, for now anyway. But I have literally gone off almost all my other meds, including the sleeping pill amitriptyline and the nerve pain medication Cymbalta. As for the hydrocodone, I’m down to like one or two pills a week at the most. And sometimes, I can go the whole week without taking any at all — which is pretty much a miracle of God if there ever was one.

There’s also been some weight loss. I honestly never went back to the weight loss clinic because they wanted to put me on a weight loss drug, and over the last couple years I’ve come to a place where I just don’t want to be on any drugs unless I have to.

Even so though, feeling better has meant that I’ve been able to walk three to five miles about six days a week all summer, and I’m excited to report that since May I’ve lost 30 pounds! WHAT?

I had a visit with my amazing doctor last week, and we talked about whether or not the vitamin D deserved any credit for my newfound ability to shower almost every single day.

When I showed him that I had a whole bottle of hydrocodone left over — I honestly used to run out of the drug a week early each month — he literally said, “Congratulations!”

He tested my vitamin D, and I’m happy to report that I’m now at 35 ng/mL — a much healthier level than six. As my doctor remarked on the top of the lab results, “Your vitamin D level looks good. You can safely keep taking your current dose of vitamin D supplements.”

When we talked about it during the appointment, he told me that the vitamin D could be part of why I’m feeling better, or it could be that the nerve that they think was causing the pain had shifted somehow. Or it could be something else all together. Maybe it’s the placebo effect, or maybe it’s all those Taco Bell Cheesy Gordita Crunches I eat every other day that have something magical in them.

So yeah, I don’t know if the vitamin D is the reason I’m feeling better or how long-term this could be, but honestly, I don’t care. I’m just happy that I can clean the bathroom again.

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Is the Mayo Clinic’s pain program worth it?

So I’m pretty sure my insurance isn’t going to cover the three-week pain program at the Mayo Clinic.

Or at least that’s how the registered nurse I talked to on the phone made it sound.

She said something about how my specific insurance has never actually covered the pain clinic for anyone before. Then, because she didn’t want to completely dash all my hopes and dreams, she tried to pretend like I might be different somehow. She went on and on about how young I was, how sick I was, and how I had tried everything else, so I didn’t really have any other options. And she said maybe, somehow, I’ll be able to convince them cover it.

The thing is, I’m not even sure I really want them to.

Aside from the obvious logistical issues — like figuring how to tell my boss that I need three full weeks off work, or paying for 21 days at a hotel, or figuring out how to get myself to Rochester, Minnesota and back — I’m just weary of the program in general.

The most obvious red flag is that the nurse flat out said that their goal is to get patients off all their opioids by the end of the program.

Call me a drug addict if you want, but I was hoping the goal was to make me feel better. Apparently, I was a little off. The nurse told me multiple times that the program was “not a fix for the pain.” It’s more about helping you learn to live with it — something I thought I was already doing pretty well.

Plus, I’m just not sure I’m ready to go off my opioids. It’s taken me almost two years to find a balance of medications that I can live with, and I’m extremely weary of messing with it.

When the nurse started preaching against the evils of opioids, I wanted to stop her and ask if she’d ever been in obscene, chronic pain. Because I’d bet my last pain pill she hasn’t. It’s always the healthy people who are staunchly opposed to opioid medications.

Like so many other chronic pain patients, the opioids have literally saved my life. They’ve helped me keep up the good fight when I didn’t think I could endure any longer. They’ve kept the pain at bay so that I could shower, work, and even go shopping sometimes. They’ve been the only thing to offer me a much needed reprieve from the pain on a regular basis — so when all hope was lost and I started to worry I’d be living with a knife-like pain for decades, I could take a breath and remember that the pain would eventually go away again, if only for a little while.

Of course, it’s more than just the idea of giving up opioids that worries me. There’s the obvious stuff, like how would I survive out there alone for three weeks, seeing as how I currently rely on my mom for something as simple as my laundry? Or do I have it in me to continually show up for such an intense, daily program? And, most importantly, what if everyone there sucks and is mean?

But there’s the other stuff too. The kind of stuff you find yourself worrying about when you’re chronically sick and you’ve been disappointed too many times to count.

Like, what if they can’t help me? What if I go through this whole program and I come home and I’m exactly the same? Then what? Are there any options left?

Or why exactly would my insurance company refuse to cover it? I’m certainly not one to defend an insurance company, but do they have some sort of legitimate reason? Do they deny claims for the program because it doesn’t work? Or because it’s not based on enough research?

Or maybe, worst of all, what if I fail? What if I go there and the program is too much for me? Or I can’t cope with the changes or I don’t have it in me to do the work? What if, at the end of the day when I leave, I’m still just as sick as I was before and I’m left wondering if there was something more I could have done?

So no, I’m not sure that I even really want my insurance company to cover the three week pain program at the Mayo Clinic. The good news is they probably won’t.

UPDATE: Since writing this post, I have officially found out that my insurance would not cover the program, and so I would have to pay $35,000 up front to do the program. So, I have decided not to purse it. 

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Looking for God on the operating table

There I was, stomach down on the operating table, in only a hospital gown and my underwear, and I found myself doing the one thing I hadn’t sincerely done in months.

I was praying.

With my whole heart, my whole being, and my whole soul, I was saying the most earnest prayer I could remember saying in a long, long time.

“Dear God. Please, please, PLEASE be with me right now. Please, whatever happens, please do not let them hit a nerve. Please God. I could not handle it if that happened. Please God. You are the only one I can ask for help right now. I need you. I need this. Please help me.”

It was my second trip to the Mayo Clinic and I was in the midst of what was supposed to be a 10-minute epidural that had passed the hour mark. The original doctor had been unable to get the needle through my spine in my middle back, and another doctor had to be called in to consult.

Eventually, they decided to go through my lower back, but to get the medication in the right place, they had to thread a catheter tube up my spine — no easy task. They kept threading it to the left when it needed to go right, and so they had to keep pulling it back down my spine and out of my body and redoing it.

In case you’re wondering, it really hurts when they do that, and you can totally feel it.

Before the procedure, everyone I talked to, from the nurse who checked my blood pressure to the actual doctor slated to give me the epidural, had assured me seven ways from Sunday that this was going to be a quick and easy procedure.

They told me there was no reason to give me any of the sedative I had been given when I had undergone a similar procedure awhile back, because this one was just going to be so dog gone easy.

I should have known then that it wouldn’t be. But I nervously took them at their word.

Eventually though, as I heard the doctor tell his resident, “I’ve just never seen anything like this before,” I started to worry that this whole thing was going to be full of worst-case scenarios. One of which was that they could hit one of my nerves during the procedure, which could send a shooting pain down my leg, that, from what I could gather, would hurt like hell.

So, as more and more things went wrong, I lost more and more faith in the doctors poking me in the spine. And eventually, I turned to the only one you can turn to when there’s nobody else left to ask for help — God.

“I’m so sorry that we haven’t talked much in the last few months. I am so sorry that I haven’t been going to church. I swear, I am,” I prayed silently. “I just really need your help right now. Because I am going to freak the eff out if they hit my nerve. I’m telling you, I could not take that.”

Eventually, about 90 minutes after I first lay down on the table, they were done. The doctors had managed to get the medication into the right spot without hitting any of my nerves.

I could barely walk out of the room to where my clothes were, and it felt like someone had just stuck a bunch of needles into various parts of my back — mostly because they had.

All I could think about was that prayer though. I hadn’t prayed like that in such a long time.

So many people write how having a chronic illness strengthens their faith, how it brings them closer to God than they’ve ever been. But I have no idea how that happens. For me, it’s made me a little bit more of an atheist every day.

When I first got sick, before I was on any medications that helped at all, before I had any idea what might be happening to me, I would lay in bed at night, unable to fall asleep because of the pain, and I would literally cry out to God.

And in those moments, when the pain only got worse, He seemed so silent.

Then, when it became clear that I would have to resign my role as the youth leader at the church I was attending, I started to question whether this whole thing was somehow God’s way of telling me I wasn’t doing a good job leading the youth.

I know, I know, that’s probably not true. But when something like that happens to you, it’s impossible not to have those thoughts.

From there, I started to wonder how any God could ever let one of his children suffer the way I have.

And then, one night a few months ago, I was up all night in such severe pain that the next day the doctor gave me a shot of Dilaudid. Unfortunately, instead of relieving my pain, it promptly made me start vomiting uncontrollably. I literally threw up all night long, with barely enough time to catch my breath between each time.

It was the worst 48 hours of my entire life. And it was then that the questions of where God could possibly be during all of this really started to take root.

I really do believe that life with obscene chronic pain is the worst life imaginable, and I don’t understand how it could possibly lead anyone to have a closer relationship with God. For me, it has only made Him more and more distant.

Maybe I am angry or just confused. And maybe one day everything will become clear. But for now, I am in too much pain to make sense of the fact that a supposedly loving creator would let one of his creations endure such a thing.

And yet, there I was, on the operating table, praying with such a sincere heart that I barely recognized myself.

So I guess when it comes right down to it, I still want really want to believe. I need to.

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