The Daily Med Routine

The daily med routine.

It takes a ton of medicine to get Elise through her daily life. Sixteen meds per day actually (a couple aren't pictured). And, several of those are twice per day!

I can remember a time that we brought Elise home on one of our breaks during cancer treatment and she was taking 14 meds. Life was completely out of control and we were just trying to keep the wheels from falling off. We were glad to take her home, no matter how many meds we had to give her. That was a crazy time. Fast forward about 10 years and I told one of Elise's helpers, "It's not like it used to be. There was a time she was taking 14 medicines per day!" 

It is amazing how life does something like this to you and you never even realize it. There was a time when she was down to 2-3 medicines per day right after cancer treatment, but that didn't last too long. Gradually we have added more medicine to treat various aspects of her life. Gradually...... until we were back up to 14 (or more). Honestly, we have been in the range of 14 meds for so long I didn't even realize it. As we slowly got acclimated, that out of control feeling went away (or at least diminished) and we began to normalize our life full of so many medications.

It is for this reason that surgical procedures and changes to her daily routine are so difficult for her and scary for us. It takes consistency, a pretty rigid schedule, some luck, and lots of prayers to keep her as healthy as she is. Even a single dose of Tylenol or Ibuprofen messes with that balance. We have to be strategic about how they are used. When Elise recently had hip surgery we ended up with 3 (I think) additional medicines to deal with pain and muscle spasms. The balance was acceptable for a week, but eventually spiraled out of control and landed her in the hospital for more than a month. 

Needless to say, we aren't too eager to jump into conversations about additional surgeries. Several specialists would like to get her on the surgical books to deal with this issue or that issue. But, as we have learned over the years, what the doctors want, and what Elise's system will tolerate, are not often the same thing. She does everything in her own way and in her own time. 

Over the years we've had a love hate relationship with the pharmacy. The Children's Mercy Hospital pharmacy has always been great to us. But, we can't travel 2 hours (one way) to go to the pharmacy. I generally go to the pharmacy 4-6 times per month, as long as everything goes right. When we lived in Kansas City, Kelly developed a great relationship with Jason, our pharmacist at Walgreen's near our house. She talked with him regularly, he always gave sound advice, and he went out of his way to ensure that he could get whatever Elise needed when she needed it. Most people miss friends, family, their old house, etc. whenever they move to a new city. We missed our pharmacy! Don't worry, friends and family were a close second. :-)

It took a number of years for us to finally develop a relationship with the pharmacy here in Manhattan. We have been loyal and have stuck with Walgreen's all these years. Sometimes they make me want to tear my hair out, what little I have left, but overall they have been good to us. Using a national pharmacy has bailed us out more than once over the years when we ran into medicine trouble in another city, and even another state, multiple times. It helps that our trusted pharmacist also lives in our neighborhood too.

Taking this many medications is not a badge of honor. It is certainly not something we enjoy, or that Elise enjoys either I am sure. But, they are a necessity in her life. I could probably go on railing on health insurance, drug costs, over medication, etc., but you can read enough of that elsewhere. The system is confusing, time consuming, exhausting, but necessary in our case. Most days I choose to be thankful for the medications that Elise gets and all that they do to help her be the best version of who she is. Modern medicine is truly amazing.