Multiple conditions and keeping track of all your medications

@colleenyoung and all...
Hello, Colleen! I've missed you, lady.
Wow! Do I ever agree! I spent decades with medical folks who treated me with little respect, as though I had only a partially functioning brain... either due to my being a female OR to my related to my age.

Gemini crickets... how many battles I fought through the decades! To be seen. Heard. Listened to. And to finally get help, over 2 years of tapering and excellent guidance, from a remarkable physician at Mayo Jax... he saved my life and my sanity.

As I mentioned in a previous message, he was the only doctor who took the care and interest in my health to oversee the reduction, removal of multiple medications that were harming me for years. I am very sure I would not be in the physical difficulties I am now were it not for the harsh chemicals thrown at my body... one on top of another, added and increased with no careful thought of outcome.

Truly horrid side effects. Affecting my entire life. My personality. My organs, bones, hair, muscles -every part of me.

Can you tell I get nuts about this issue? I do. Rightfully.

That, Colleen, is why I so strongly urge folks to take control of their health care. Be their own advocates. Stand up, ask questions. Be heard. And be heard when you are not treated properly by medical folks on any way. It is tough, especially as we age and get weaker, are alone, so ill...tough, but vital we make ourselves watch and ask and be heard... make our own decisions when possible. And, fight to find some one who will listen! Then, do your own serious research!

Importantly.. be heard and be courteous, say thank you out loud to their faces, be supportive of the medical personnel who are caring, kind, thoughtful, and who listen. They are dear. Special. Many are found at Mayo. Not so many elsewhere in my experience, which were many. Mayo is different. Most of the time. Still have some who are not educated in the Mayo way. Or who still think they are 'God'. Or, who's head will not fit through the door. But far fewer at Mayo. Or who are so young and untrained they are not yet Mayo quality. But, that is rare. For which I am ever grateful.

Blessings... Elizabeth.

@jakedduck1
Exactly. I do not take a medicine with a side effect I am not willing to live with.
I personally have not had to take many medications to manage my health issues until recently. When I tried to change doctors, I was bombarded with numerous medications my potential new doctors insisted I needed to take. I knew enough to look up the potential side effects and was horrified. I refused to take them. At least "refused" is the terminology those doctors used in my medical record. You are correct, the potential side effects I talked about were ones listed from reputable sources, and I did not personally experience.

I did experience severe memory loss when taking Gabapentin for a short period of time. And "memory problems" was listed as a potential side effect on that medication. But each person is different and some people have stated on this forum that they have done well taking Gabapentin. I just feel that we should all know what the potential side effect of a medication is and if it is right for us.

Happy to let everyone know my husband is working with a staff that is helping him with his INR levels. He has an at home monitoring devise and is in touch with the staff at UMPC. Thank you for your concerns.

@grannytrucker
You mentioned "Other doctors prescribed medicine with horrible side effects, which I refused."
If you refused them I assume you never took them? So I'm guessing the side effects you're talking about were POTENTIAL side effects you may or may not have had.
Jake

@grannytrucker, of course some things can be attributed to aging. But boy do I get hot under the collar when someone says to a patient, "it's because you're old."

When it comes to medication management I find pharmacists an essential member of my health care team. The understand side effects and possible drug interactions.

Here's a related discussion that may interest you, @ann78 and others:
- Medication reconciliation: Who do I talk with to review all my meds?https://connect.mayoclinic.org/discussion/stop-all-medicine/

@grannytrucker, I'm glad you were able to go back to your former doctor. (Love your username, by the way. Were you or are you a trucker?)

@ann78

@ann78
Full disclosure, I don't know anything about Coumadin, Warfarin, an artificial valve, or any of that has to do with your husband’s "count." But was interested in your comment. I recommend that you go to “mayoclinic.org” and on the home page, you can “search” various medicines and their side effects and ask questions about most medicines. I frequently search for side effects of any medicine I take, or the doctor wants to prescribe. There appears to be a lot of information of interest to you about Coumadin or Warfarin on the Mayo Clinic website.

What do your husband's doctor and pharmacist have to say about his "count" being off. Did they have suggestions? And, if you don't mind me asking, how old is he? Surely, without risking his health, someone who is a health care professional can suggest what to try to get his "counts" where they should be.

The reason I ask is because a while back, I tried to change doctors. When I asked the new potential doctors questions, they basically told me that I had the problem because I was old. Some people might feel a bit intimidated and accept that answer but that was not acceptable to me. Other doctors prescribed medicine with horrible side effects, which I refused. Thankfully I was able to go back to my old doctor!

Bless your heart, his health must be all consuming but a blessing at the same time! And thank the Lord that he has you!

I wish you and your husband the very best!

I would need a pillbox the size of a full drawer so I just keep them nearby and a notepad with what meds when and also notes of what to order one monthly 2 monthly or 3 monthly as I am allowed to order..I just use my phone calendar as a reminder what script is due ordered when..or else my alarm would never be stopped ringing..

Great article. I’ll be sharing it with friends.

@johnbishop and all...
Hopefully is a key there, John. I am concerned so many patients, especially older folks, rely on the doctor and staff as advisors and experts without taking personal responsibility. I strongly advise everyone to be responsible for his own health decisions... do the research and discuss openly with your doctor and staff. It's tough to do, but i suppose I learned this through years of illnesses, too many medications, multiple side effects and longterm harm. And, I have no one to handle that responsibility for me.

I have multiple illnesses. Have for decades and am still accumulating more! Fun! I take far too many medications, but I am dedicated to only taking what is truly required!

One on my lovely Mayo doctors took a couple of years to help me decide and adjust my meds... while doing the regular doc stuff. I cherish this man! After begging for help for years...
He helped me get off:
Lyrica, Gabapantin, Hydrocodine, Oxycontin, and other chemicals and do it properly, slowly, tapering, with care. It took 2+ years. I did it! I saw my body say thank you... brain fog gone! Gone! I saw colors in the world again. My personality changed to the real me! Balance improved! Fewer falls! Less irritability. More functional. Mobility improved. Headaches gone. On and on and on...
Now, I am on a bunch of maintenance drugs. But, they are necessary to keep going. No scary, serious stuff like those were... still, some serious heavy meds but I truly need them. Prednisone, xanax, Prozosin for PTSD, Elliquis, Robaxin for muscles!!!! Prednisone and Robaxin keep me from being paralyzed and my muscles from cramping and freezing. Prednisone controls various autoimmune diseases. Blood pressure meds. Insulin for serious diabetes caused by steroids! And others. Each necessary to keep me going. Some causing side effects, but unavoidable. Just must deal with them and move forward.

Since I handle so many drugs and my disabled son's as well, I worked for several years to find a reasonable, workable system i can manage.

I found a local, family owned pharmacy in Jacksonville that Mayo uses for their transplant patients. They have human, personal delivery service Monday through Friday. On weekends for antibiotics or such, I use Walgreens. All other drugs for both my son and me are with the private pharmacy. I have a personal relationship with the pharmacists, owner, staff, delivery person. It's ideal for my situation. They know my drugs, check interactions, advise me and answer questions, help resolve issues.

I refuse to use mail order delivery. Our drugs are vital to our survival. Many can not be missed without serious issues. Storms, human and computer error can not enter into my life. This is a God send for me. Having both our meds set up with one location is vital as well... as simple as possible

I prefer the 4 pill a day pill bins - A.M., noon, evening, bedtime. Works for us both. I include meds and supplements... YES! We take supplements. I carefully investigate each for efficacy, get them from reputable sources, do my research and am thankful we have them. I also am careful to inform my doctors what supplements we take, and list them on our medication lists online. Important!

I fill the pill bins once a week, or if I'm able, my arthritic fingers/wrists allow, I fill 2 weeks at a time. Atcfirst, i did a month at a time. Can't do that now due to my physical limitations. I get 90 day supply for most pills. Staff calls 1X monthly to go over our pills for any changes or whatever, fills and gets them all delivered on time. We worked to get them so can be filled at the same time as well, to reduce delivery, make it simple for me and to always have what I need. If storms are heading to Florida, they help me get a supply to get through the weather.
Recently, changed to new pill bins, slightly larger bins and colored, easier to see them. We both have eye issues, so bright colors are good. They have a regular place/drawer to stay, out of sight of visitors, workers, but easily accessible.

I always take one or two days of pills with me in case I need them and to ER or doc visits, just in case I am admitted.
So far, this system works well for me. Issues arise when I'm ill and out of pocket, but I've been known to insist the facility allow me to fill my son's bins when I'm in hospital or rehab. They work with me.
Don't know what will happen after I can no longer do this. Working on that now... suggestions?

That's it! Hope it helps some folks with ideas. Blessings all, Elizabeth

@johnbishop

For me, taking several med’s daily for different conditions, some are pretty easy to self-monitor. Didn’t take the anti seizure med? Just had a seizure. Skipped the asthma med? Started wheezing. The blood pressure med’s are different. You really don’t know without the weekly blood pressure checks. Finally there’s watching for side effects of the anticoagulant but hard to tell on a daily basis if it’s really working.