doctors – The only certainty is bad grammar

Is Vitamin D Making Me Feel Better?

December 2, 2015 Crystal medium, Pain

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.

Chronic Pain: Nobody Tells You How Hard It Is

June 11, 2015 Crystal Pain

Some days, I feel like I can finally lift my head above water. Like I can finally take a breath. Or better yet, a couple of deep breaths.

I feel like maybe I finally have this whole chronically sick thing figured out. And, finally, after being in pain for more than two years, I can focus on living the life I want to live. Like just maybe, this whole chronic pain thing isn’t going to win after all.

And then other days, like today, I wish I was dead.

Days when I wake up with an insane amount of pain in my ribs, and a migraine and I have to work because I’m genuinely afraid I’ll lose my job if I call in sick one more time.

Days when I hate my body so much, because it’s like a jail keeping me prisoner and holding me back from the life I once thought I was born to live. And days when I want to push myself, because that’s what I do, I push things, to the limits, and that’s how I have always lived my life.

But then I do that, I push myself, and I do something crazy like go for a walk, or stay up late, or take a shower two days in a row, and then I literally end up spending the next week on the couch in too much pain to function.

Days when all I want to want in the whole world is to lose weight, but instead, because of my stupid body, the only thing I’m allowed to want is relief from the pain. So rather than putting all my resources into losing some of the 50 pounds I’ve gained since getting sick, I have to use all my resources to just sit on the couch and check my email.

I want so bad to worry about regular things, like whether or not my boyfriend is ever going to propose, or whether or not I’ll get that promotion. I want to think about going for a long walk, and just worry about the weather.

But my body won’t let me. Instead, I have to worry about whether my boyfriend will, or should, stick it out with someone who is so radically different than the healthy, much thinner girl he first met almost 5 years ago. I have to worry about just keeping my job. I have to worry about whether my body has had enough time to recuperate from the walk I took three days ago to allow me to blow dry my hair.

Being sick every day of your life is so much worse than anyone ever tells you. It’s so much harder than anyone can ever explain.

That’s the thing, really. There’s no “talk” with the doctor when you have chronic pain. A medical professional doesn’t pull you into his office, hand you a box of tissues and say, “I’m so sorry to tell you this, but you have chronic pain.” That conversation never happens.

Instead, they scan your test results, say something about sending you to a pain specialist and then they go on with their life, while you’re left holding the pieces. Or worse, they say, “At least you don’t have cancer.”

Everything is suddenly different, but nobody has the decency to tell you that. They just ship you off to another doctor and hand you some opioids.

But your life has been changed forever.

There’s the constant, daily battle with the pain, and the insane side effects from the drugs you use as weapons. There’s the loneliness and the feeling of failure that comes from being stuck on the couch in pajamas all day, every day, even on Easter. There’s the assault on your faith, and the outright attack on your ability to hope. And there’s the way your brain goes crazy just trying to understand how you’ll ever endure like this forever.

There are other days though. And on those days, for a second, you almost feel like you’ve got a handle on the situation, like you’ve got your head above water.

Today just wasn’t one of those days.

Why I love my doctor

March 22, 2015 Crystal Pain

People are always asking me why I drive two hours, one-way for a doctor. I mean, it’s not like I live in the middle of South Dakota (anymore) — there are plenty of other doctors right here in Illinois, some of whom are even in my hometown.

The only way I can explain it is to tell you that I drive two hours, one-way to see the most amazing doctor I’ve ever had because over the last two years I have seen so many of the worst doctors I’ve ever had.

And, if I had been a patient of one of those doctors, I probably would have ended up in the hospital instead of Black Friday shopping at the mall with my little sister.

It all started because I was up for a refill on my super strong pain pills, which the federal government has decided are so potent that I am required to get a written prescription for it every single month lest I become Pablo Escobar.

Usually this just means that my doctor mails me the prescription, because we both agree that a four-hour round trip for a piece of paper in 2014 is ridiculous.

But this month, my doctor decided to mail the prescription directly to the pharmacy instead. Something about how if a carrier goes postal, or someone robs the mailman, then I won’t have any issues because they can just re-send it to the pharmacy — something they couldn’t do if they sent it directly to me.

And since my doctor is basically my “dealer” and therefore holds all the power in our relationship, I said, “Fine. Whatever.”

Except, like a week went by, and the pharmacy kept telling me they never got the prescription in the mail. I assumed it was because of the Thanksgiving holiday messing up the mail schedule, but by Friday I was completely out of all my pain drugs and was starting to go into withdrawal.

In other words, I was literally thinking about killing myself by downing a bottle of sleeping pills. Seriously, that’s how quickly things can devolve when you suffer from non-stop chronic pain.

And the pharmacist was all, “Yeah, no, they can’t call in a morphine prescription. Sorry.”

In the olden days (a couple months ago) my doctor could have just called in a hydrocodone prescription to hold me over. But alas, the federal government has deemed that drug too hardcore as well, and now a written prescription is required for it too.

And so, as I was trying to decide whether I would attempt to live off unhealthy amounts of Advil for the next few days or just kill myself, I thought maybe I should give my doctor a call and just check to make sure there’s really nothing he could do.

In the back of my mind, I kept trying to remind myself that my amazing doctor had always come through for me before, and that I had no reason to doubt him now.

I mean, he’s so amazing, that if I ever run out of pain pills early, instead of pointing me toward a drug rehab center, he actually asks why I came up short and then tries to figure out a solution so it doesn’t happen again next month.

And, during appointments, instead of staring blankly at a screen typing everything I say without listening to a single word, he actually listens to me and all my stupid questions, and even engages in a two-way conversation. There’s usually even eye contact! Crazy, right?

He’s also the kind of doctor who, when I showed up at his office after three endless days of insane breakthrough pain, instead of handing me some Aleve and a pain specialist referral to get something stronger, he actually gave me a pain medication shot right there on the exam table.

As it turns out, he’s also the kind of doctor who’s able to order a 3-day emergency prescription of morphine over the phone, so that I can make it through the next few days without dying.

The relief that flooded my heart and soul when I found out that I was wasn’t going to have go through hell, agony, withdrawal and a pain spike waiting for the postman is hard to explain.

I mean, I didn’t even know emergency prescriptions were a thing that could be done. Luckily, because I have an amazing doctor though, I didn’t need to — he was already on it.

I still don’t actually have the full prescription because it turns out that my local, small town pharmacy requires doctors to send prescriptions to a P.O. Box instead of their main address. However, my doctor’s nurse knew nothing about this, so now the prescription is probably on its way back to Wisconsin with “Return to Sender” stamped on it in big red letters.

But, the nurse told me today that they’ve sent another prescription, this time to the right address, and in the meantime, they’ve also sent in another 3-day emergency prescription to hold me over.

I can tell you from all of my experiences from horrific doctors, that most of them would have just shrugged their shoulders in that situation, and silently judged me for being a druggie, and told me to wait for the mailman like a good little patient — withdrawal and pain spikes be damned. Or, they would have insisted that I get in the car and make the 2-hour drive to Wisconisn right then and there to pick it up myself, despite the fact that without pain meds a drive like that would have left me for dead for like a week.

So, when people ask me why I drive four hours, round-trip to see doctor, I just nod my head, smile and say, “Well, he’s the best there is,” and leave it at that.

Because I know in my heart that he cares about me, and that’s more important than proximity any day of the week and twice on Sundays.