Why I follow my doctor’s instructions

Anyone who has a debilitating disease or chronic illness, and is on a lot of medications, has had to sit through the “But what if?” conversation (or in some cases, lecture) at least once.

You know exactly which conversation I’m talking about. It usually comes from a concerned family member or friend, someone who’s done a lot of reading, especially on the internet. They back up their reasoning with a lot of memorized facts, new found statistics, and the sworn testimony of at least one doctor that you’ve never heard of, but is apparently a huge deal online or in Miami.

The content is always the same and always concludes with “Why don’t you try going off your medications for a few days and see what happens?”

Or,

“You’re just putting bad chemicals in your body. What if you just stopped taking the steroids and see how much better you would feel?”

And 50% of the time, these questions are followed with,

“It worked for this guy I read about,” or, “My good friend’s cousin went off his pain meds, and he cured himself.”

I’ve said this many times, I’m very close to being labeled as a broken record, but I’ll keep saying it as many times as it takes to get the message across: Every case is different.

What worked for someone in Kentucky, may not necessarily work for someone in Washington. There are so many factors you have to take into consideration! Do those people suffer from the same disease, and if so what is their severity level? Which medications are they on, and how long have they been on them? What kind of treatments have they tried? What are their allergies? How long have they been sick?

There is a legitimate reason why doctors tell their patients to stay on their medications. It’s not so they can make money for Big Pharma. Sure, I have heard that some doctors get certain kickbacks for promoting a certain type of drug or treatment or surgery type. But those are treatment/medications for very specific illnesses, and I can guarantee you no one is getting a bonus for prescribing Prednisone. Everyone who’s ever been in an accident or had an inflammatory issue, has been prescribed Prednisone. There isn’t some huge cover-up going on here, these doctors are just trying to help their patients. They don’t want us to get worse. But you know what would make us worse? Going cold turkey off our meds.

You know when you pick up your medications from the pharmacy, and they always make you confirm your prescriptions right then and there before placing them in the bag? That’s to make sure you’re taking home the correct medicines. And you get an essay worth of directions in pamphlet form along with it, so you know exactly  what you’re putting into your body. They list what the medications are for, possible related side effects, and instructions on when to call your doctor if you think you’re having an emergency. And I can guarantee that nowhere in those pages does it say “Yes it’s totally alright to stop taking these without consulting your doctor.”

In fact, each time I visit one of my prescribing doctors offices to get a refill, I always get a mini lecture about drug safety. They always want to confirm that I’m still taking my medications, and that I’m on the correct dose, and that I can always get my refill in a timely manner. They always express how important it is that I have an overlap when picking up a new rx, so there’s absolutely no chance I have to deal with withdrawal symptoms.

See, I don’t think these concerned friends and family really think about what it means to just “stop taking meds for awhile.” And sure, I get it. As someone who doesn’t rely on daily medications to be active or mobile or pain-free, there is no real way for them to understand what going cold turkey would feel like. They’re just reading an article and thinking, “Hmm, this seems like a healthier option.”

Well, sure! Of course being on zero medications is healthier! None of us actually want to put hard core chemicals into our bodies! But we do it to survive! We do it so we can live active lives and be mobile. We do it so we can handle living with the pain. There are so so so many reasons we take these medications, but I’d say the #1 reason is we take them TO STAY ALIVE.

I found an article online recently about going off of pain medications without using a prescribed timeline from your doctor. See, when changing medications, especially pain management drugs or corticosteroids, you need to allow your body a very slow ease off the medications so that you don’t go into shock. Especially if you’ve been on those types of medications for a long time. They build up in your body, so it’s necessary to ease off of them slowly. I, myself, have been slowly easing off of Prednisone for the last year. Now, if I were to go from say 10mg a day to nothing-cold turkey, well… I’d be in the emergency room within the first 12 hours experiencing the worst withdrawal comedown ever.

According to http://www.mayoclinic.org & http://www.medicinenet.com without slowly tapering steroids alone, (pain management medications being an entirely other matter), negative symptoms can include:

  • Severe fatigue
  • Weakness
  • Body aches
  • Joint swelling/pain
  • Dizziness
  • Anxiety
  • Nausea/vomiting
  • Low blood pressure

And harsher symptoms can include but are not limited to:

  • Adrenal failure
  • Suicidal thoughts
  • Severe dehydration
  • Migraine
  • Paranoid Delusions

Um…Yikes! No, thank you.

You want me to go cold turkey off my meds? Well, I hope you’ll be there picking up the pieces of what that looks like. Will you’d be at my home first thing to help me out of my bed and into the bathroom? Will you be there to make all my meals, help me shower and dress, maybe even wipe my ass if my joint pain doesn’t allow me to even do that myself? Will you be with me day and night as I struggle with the excruciating pain? Will you sit with me while I cry because it hurts too much to even sleep?

Because that’s what we are talking about when you suggest that I just “Try not taking them for a week.”

We are talking about cold turkey, horrifyingly painful, medicine withdrawals. Withdrawals that I doubt you have scheduled yourself to be available for. And if reading articles about how to help people with debilitating illnesses is something you’re interested in, might I suggest the following websites:

http://www.rheumatoidarthritis.net

http://www.rheumatoidarthritis.org

http://www.invisibledisabilities.org

http://www.butyoudontlooksick.com

These sites are a fountain of useful information on types of diseases and disabilities, descriptions of treatments and medications, and supportive ways you can help people who are suffering.

How do I know that I would experience the kind of withdrawals those websites suggest might happen, you may wonder? Well, because I’ve experienced it before. Twice, under the supervision of my doctors, we have tried to taper my prednisone to almost nothing. The result was a living nightmare. I ended up in the ER both times, immobile, in horrifying pain, screaming. A. Living. Nightmare.

So, no thanks on the suggestions that I should try quitting my meds “just to see what would happen”. Cause I already know the result.

Death. Death would happen.

But I appreciate your concern and support, all the same.

In my ongoing efforts to support myself whilst waiting for my Social Security benefits to kick in, I am still asking for and accepting donations for financial help. Please check out my web page at http://www.gofundme.com/sixthousandsteps

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on June 7, 2016, in The Journey and tagged , , , , . Bookmark the permalink. Leave a comment.

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