Friday, February 06, 2015

National Drug Week post -- Know Your Meds and Stay Safe

National Drug Week has just passed and American Recall Center brought to my attention a number of thing, including how to understand your medications and their side effects.  To me, the two go hand in hand, and I'd like to share some of my experiences with juggling 30+ pills a day. They had read my post about my Spoon Theory spoon asked if I'd write my thoughts.

(I promise I'll get back to jewelry next blog post. But this is important.)

Most of you who have visited my blog know I suffer from lyme disease (misdiagnosed as lupus for a year) and the coinfection babesia. Being treated properly for these two nasty diseases is daunting. I feel fortunate I was able to find a doctor who knew what tests to run, lucky that I had the money to have independent labs run complete blood tests, and extremely glad I have an understanding husband and son, because the past two years have been a really ... interesting experience.

babesia bacteria infecting red blood cells.  source.
lyme bacteria in spirochete form. source.

The first year of my misdiagnosis, I was given a lot of different medications for lupus and rheumatoid arthritis (the latter of which I do have, but is under control today). No matter what meds the doctors gave me -- prednisone, methotrexate, whatever -- I was still in enormous pain and was incredibly tired, so tired it no longer felt safe to drive. First I was given Tylenol-3, and as my body grew a tolerance to each new pain reliever, I finally was prescribed slow-release morphine, which I took for a year.

Something my pain management doctor told me (and any good doctor will tell you) is you have to weigh the reality of becoming addicted to the pain medication against living in pain. For a little while, the morphine helped. I also had a muscle relaxer to help with the intense body pain. That sometimes helped, but rapidly became ineffective.

Very quickly, I realized it was doing me more harm than good. Morphine has a bad habit of causing rebound pain. At first, it was doing a good job of keeping my pain dialed down to a Level 5 instead of my normal Level 10. It was time to detox off the bad stuff, and while it took a little over a month and was one of the most difficult things I've ever done, once I was off morphine I was in no worse pain than before. The morphine had done its job for a while, and it's not a decision those in serious pain should make lightly, but for me, it was the right move.

Opiates have their place, but they can mess you up if you're not careful. Several times, I nearly overdosed because with the brain fog of lyme I often couldn't remember if I'd taken it or not. So I'd take it again. And again. When you take too much of anything (even chocolate!), it's bad news. When you take too much of a high-level opiate, you're asking for serious complications, or even death.

Opiates slow your breathing down, and I already had issues with the lyme affecting my heart and lungs. I also have asthma. And of course, I was lying down almost all the time, so my heart wasn't working at normal capacity. Put that all together, and you get a girl who can't wake up.

My husband Rick very quickly took charge and locked away all of my pain medications so I would have to ask him for one, and he kept track of when I took them. He also started researching what I was taking and realized that since I had several doctors trying to treat several different things, I had a potential for a nightmare on my hands in the form of bad drug interactions. I highly recommend that you have a significant other take control of your medications while you're in a less-than-normal state. It saved my life, and it can save yours (not to mention pills away from any children in your house).

Rick put together a spreadsheet to keep track of my medications, which became an absolute must when we got the proper diagnosis of lyme and babesia. Additionally, the many medications I'd been on gave me non-alcoholic liver damage, chronic gastritis, and a litany of side effects. It became increasingly important to keep track of what I took, when I took them, what dosage, and very importantly, what doctor prescribed them. I carry a copy of this spreadsheet in my purse and make sure that every single doctor visit I have, no matter for what reason, I give them a new copy. (There are apps you can use on your phone or tablet, but I'm an old-school paper girl.)

Taking control of my medications in this way enabled one doctor to see what another doctor was doing and make changes or suggestions of things that would help what THEY were giving me work properly and with a minimum of side effects. Our local pharmacist knows us by first name, and they keep an eye out as well. But do your research.

My current pill, liquid, topical, and injection med load (in part).

An important thing to keep in mind about your pharmacist is your bottle of medicine can only hold so many warning labels. When I started realizing my refills were coming to me with different labels than before, I knew Rick and I had to read up on each and every medication. Your pharmacist is your friend, so don't be afraid to ask them about additional side effects you should know about, as they have a listing of all the prescription medications you take. Don't forget about supplements, too. Some, like magnesium and calcium, can mess up several of the pills I take, and if you take a probiotic (a great way to keep a healthy gut), you can't take it within several hours of an antibiotic, or the antibiotic kills the good bacteria you're trying to ingest.

Finally, a word about what to do when the bad happens and you mix two medications or supplements that give you a horrible side effect. Any side effect that is out of the norm should immediately be reported to your doctor. Some medications will cause you more harm than good if you stop taking them without a doctor helping you counteract new side effects.

My personal experience has been an interesting one. We discovered that two pills when taken in close conjunction gave me hallucinations. That was rather frightening, to say the least. Detoxing off morphine while still taking other meds I was used to taking caused what felt like seizures and prompted a quick trip to a neurologist. I got the shakes and fell andI have eye problems, but these side effects were finally determined NOT to have anything to do with my pills, but with the disease itself.

In short:

:: Ask questions of your doctor and pharmacist

:: Tell all of your doctors about all of your medications

:: Keep a list of your medications on your person when you leave home

:: Reference your list of meds each time a new one is added, to eliminate side effects

Quite a long post, I know, but if you've come this far, I hope you feel it was worth your time!  Thank you to the American Recall Center for asking me to participate in their campaign, and healthy living to all of you.

Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack. Visit her shops by clicking on the right side bar of this blog (please and thank you!). She is also the creator of the Bead Soup Blog Party® and author of the book "Bead Soup" via Kalmbach Publishing.


  1. yes it is very important to read up on the medications one takes and cross reference for potential side effects if any. I rarely let my parents take any new medicines without showing it to me first. it can be a big pain to detox if we dont keep a proper track of all medication

  2. Amen, medications are chemicals, and we must weigh the pros and cons. Opiates are a very effective tool for acute and chronic pain. However, the longer it's taken, the higher we build a tolerance. It's absolute Misery detoxing. It took me several months to take myself off the 75mg/hr every 48 hours dose I had been on for years. I feel rather strongly about the difference between being addicted to these meds and being dependent. I was absolutely dependent. Ok, enough of that...
    My want is for everyone to be aware that popping a pill isn't always a quick fix. And even foods, beverages, and supplements can interact with meds. There are several sites that offer easy to understand information on medications. One of my favorites is:
    I appreciate your total honesty and openness, Lori. And love all your life stories and sharing your experiences, thoughts, and jewelry!

  3. This is such an excellent post, and I am so glad you shared! Still, I hate what you are going through, and send you constant prayers. You are so blessed with your loving support system of Rick and Zack!

    When my father had cancer, I started a spreadsheet, as well. Now with my mother living here, I do the same for her. She has survived a heart attack and a stroke in the past 5 years, so there are a few pills involved on a daily basis - as well as a few specialists. I have had to call paramedics twice since she has moved in with me, and not only was I grateful for that spreadsheet - so were the paramedics!

  4. This is a wonderful post! I just found out after almost 5 years that the drug I am on for Interstitial Cystitis also causes depression and terrible nightmares. So what did my doctors do? They said I needed psychiatric care and antidepressants! I need the drug or I would be a lot worse off, but still, not one physician or pharmacist warned me of this!

  5. Hi Lori, This is an excellent post. Yes prescribed meds can mess people up really bad especially if several doctors are prescribing them. My husband was diabetic and on several medications and I learned many years ago to keep a spreadsheet. It is so necessary. I am really glad that you can be so open and share your stories with all of us. Hopefully this one will help someone else who is struggling with medication issues.

  6. Hi Lori, This is an excellent post. Yes prescribed meds can mess people up really bad especially if several doctors are prescribing them. My husband was diabetic and on several medications and I learned many years ago to keep a spreadsheet. It is so necessary. I am really glad that you can be so open and share your stories with all of us. Hopefully this one will help someone else who is struggling with medication issues.

  7. Excellent Post Lori. Yes you can have poly pharmacy with several different MD's treating you at the same time. You've seem to have with your spouse to have developed a great plan for management. Though there is no golden wand to take all the side effects and tolerance away information is the key to keep your clinical team I in check. There days with all the specialized fields its hard to keep them all on the same page. Your getting stronger and the smile on your face is great to see hugs gina

  8. What a wonderful post! I have accidentally taken too many meds myself so I make sure when I lay down I have a set amount as I have found that I do remember if I have to get up to get them. Thank goodness, I am only on a couple so I don't need a spreadsheet but it is a fantastic idea.


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