Ups and Downs

You suffer the blow, but you capitalize on the opportunity left in its wake.

I try to stay upbeat about having Parkinson’s, but some days things just don’t go right.  Actually, it is some weeks.  As I wrote a few weeks ago, I kept losing things.  And then, I ran out of Requip.  I thought I had another bottle, but I couldn’t find it.  An email to the mail order pharmacy to renew the prescription followed.  But the prescription had no refills left and took a few precious days to get approval. The meds were shipped out, but then disappeared!  There was no tracking info, so I called them back to get approval for an emergency refill, which  was approved.

When I went to the pharmacy the next morning, I was told that no, the mail order pharmacy did NOT approve the emergency refill.  So I spent the next 45 minutes arguing with the bureaucracy that insisted that the medication would come that day, so they would not approve it.   Yes, the refill came in my mail, very late in the day.  By then I had been off of it for about 4 days and was feeling the effects of withdrawal from it.   To make a long story short, it took about 10 days from the time I ran out of Requip until I started feeling halfway normal.

This all happened because I lost track of my prescription.  It was my mistake that was exacerbated by the insurance company policies.  As Michael J Fox says, you have to capitalize on the opportunities that your mistakes have created.

I think I am done with mail order prescriptions.  My life is too stressful as it is, and I certainly don’t want to add to it.  My local little pharmacy takes care of me just fine and I would rather give them the business.  As someone who takes multiple medications, as I am sure most people with Parkinson’s do, it is important to have some control.  When the insurance companies take that away from you, there is little you can do.  I can’t imagine how people who don’t know how to advocate for themselves and work the system manage to get the care and meds they need in a timely manner.

Today we are leaving for a 3 week trip to Spain and Portugal and the most important thing on my checklist is “where are my meds?”  Everything is in my carry-on bag which will stay with me the entire time.  In the original bottles with the prescription number and name of the medication.   I can’t risk any more down days while on vacation.  Now I am in control.




4 responses to “Ups and Downs”

  1. I completely sympathize with your experience …something has to be done to change system.enjoy your trip- have fun & Carpe diem! 😘

  2. Peg Elefant - Pres. Hadassah Pacific Northwest Avatar
    Peg Elefant – Pres. Hadassah Pacific Northwest

    Hi Sharon, First of all, Hag Sameakh! Have a wonderful time in Spain.
    I think I am one of the few to say I know how you feel re the meds. After the transplant, I struggled for 2 years with mail order, then switched to a local so that if I lost a prescription or forgot something needed a refill, the hassle was significantly reduced! If I’m out of a prescription, it could be life threatening. You should have seen me packing for a month in Israel! It was really all about packing the meds and working with medicare on vacation over-rides…a real pain in the ass! It took me 2 weeks to make sure I had enough plus an emergency supply! I’ve learned to cope and count. The only thing I can say is this: thank God the meds are available and that I have access! See you in July.
    Love, Peg


    Peg Elefant
    Hadassah Pacific Northwest Region

    The Women’s Zionist Organization of America
    phone: 541-740-3827

  3. Patrick LoSasso Avatar
    Patrick LoSasso

    Great post Sharon. So relevant and appropriate.


    Patrick LoSasso Trainer, Certified Strength and Conditioning Specialist w/ Distinction, CSCS,*D President, Parkinson’s Community Los Angeles 323-422-9794

    Sent from my iPhone


  4. i envy you the trip. loved both countries. Have a fab time and look forward to hearing about it when you return.

    Re your med issue. I use an independent pharmacy that tracks my meds (and my husbands) and makes sure we don’t run out. Will give you info if you want when you return. Gail

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.