Saturday, July 7, 2012

It Pays To Write A Letter!

Dear Readers,

How about my picture form Alaska 2+  years ago!  Does that help cool you off?  It's going to only be 84 today in Green Bay, WI - we may have to get out the winter parkas!  ha ha  The high temps of 99 and humidity of last 2 weeks nearly did me in.   It was a major effort to go out to feed the birds and change the water in the bird bath.  The older I get, the less I can cope with extreme heat and humidity. 

I saw the Neurologist last week.  And this was one visit with him that went very well.  He was just as nice as he could be, and I was feeling extra sharp, so I was able to answer all of his questions quickly.  

If you remember my last visit with him didn't go very well - generic drugs were ordered instead of the brand name Mirapex - I felt like I was given the 3rd degree because I couldn't take some of the drugs he prescribed even tho I had called his office, discussed it with his nurse, and she said he said to stop those same drugs -- and he clearly was in a bad mood.  I then sat down and wrote a two page letter explaining why I was unhappy and documented as much of the information as I could.   I also  asked him if he'd prefer to refer me to another doctor.   My letter was very nice, but I did remind him that I can't help it that I can't handle the preferred drug for Parkinson's unless he wants me to spend  all my time in bed and risk falling every time I got up. I also sent him the link to the Arthritis Foundation's website that had an article on generics are not always the same as the brand named drug - so I'm not crazy when I say I can't take "some" generics!.

At the end of my visit, when he was writing the new prescription for the coming year, I politely and gently reminded him that I had to have the brand name of Mirapex and not the generic version.   His comment was "I got that message, and I won't forget it!"  So he apparently remembered my letter.  I suspect he doesn't have many patients that write him a letter.   Most people my age wouldn't do that as we were taught that the doctor was always right and you just don't question them.

So, it pays to write your doctor a letter if you are thoroughly unhappy with your course of treatment or how you are being treated.    It has taken me 73 years to figure this out.  This particular neurologist has an excellent reputation for being a good one, so I really don't want to switch, but will if things continue the way they were.

Next week I see my regular family doctor, and it's a good thing because the pain pills aren't strong enough.  I'm hoping he will say I can take them every 4 hours when needed instead of 6 hours.   Summer's are always rough on me. I'm not sure why.  It might be the highs and the lows of the pressure or the change in weather.  Whatever it is, my body hurts most of the time.  It's probably the Fibromyalgia rearing it's ugly head again.   It doesn't help that we've had such extremely high humidity either, which is bad for the arthritis.

Now on a lighter note, we had the pleasure of having a visit by a good Twitter friend (MaggieTKat and ParkerTKat's mom and dad).   It is the first time we've actually met in person.   Such lovely, fun people, and both Don and I felt like we've known them all our lives.    Mario loved having them here too as he got lots of hugs, kisses and attention.  They are from MO, were visiting in the Twin Cities of MN, and were kind enough to swing over our way on their way back home (going a day out of their way to visit).   

Wanda is a quilter, who does beautiful work and makes quilts for various animal shelter fund raisers.   She just finished a gorgeous one and has donated it to help raise funds for @BabyPatches and her @nipandbones pet supply store.   Please go over and take a look at it - it's gorgeous.   If you have a spare dollar or two and wish to contribute to the fund to help save @nipandbones, and help pay @BabyPatches' mom's medical bills, it will be greatly appreciated.   @CathyKeisha is holding this auction on her blog site and it will run most of this coming week - I believe.  To see the quilt go to:  If you need any pet supplies, check out the site for  They are an excellent company to deal with and have wonderful, timely customer service if you need help with anything.

Sorry this post is so long.

Until next time - stay cool!



  1. Your blogs are never too long and are always a pleasure to read. They are unfailingly informative too.

    That was excellent advice about letting your doctor know when things aren't right between you and them. And you are certainly right about most patients being intimidated and not standing up for themselves when needed. The old saying about putting pants on one leg at a time sort of applies. They nor we are any better than the other. It pays to remember that. They are specialized in their field..and many of us are specialized in our fields. So we are all experts on something, aren't we? :-)

    I hope your family doctor can adjust your medication levels to what is needed. I can't imagine the misery of always hurting. Most of us whine when we have transient pain. To have to hurt all of the time and stay as positive as you always are is a thing to be inspired by...and I am.

  2. Great post and great suggestion re writing! I've lived my life on the other side of the fence listening to patients, and one of the "problems" is that so many older people come in all dressed up and don't like to "let the Doc down" if the medication didn't work as anticipated! So the message is,
    always be honest about your symptoms
    you deserve the best and the Doc can only do that if they have all in the information
    talking in one way of communicatin: so is writing, so is telephoning, so is emailing etc
    if you feel intimidated by ANY Doc, take an "advocate" with you so that you all "sing from the same hymsheet".

    As for pain: have you tried a Rheumatologist? They are good at settling pain in specific joints an dif you can do that then the other pains might be easier to manage.

    And always try to smile: it makes everyone very suspicious!

  3. As alway, this is such a lovely and inspiring post. Thank you for taking the time and effort required to share all this info with us. I'm hoping that after sharing your blog with our 21 year old son he will be inspired to advocate for himself the way you have been able to. ~Thanks Mary!

  4. Excellent post! Last year as I was going from one specialist to another I became so depressed that I sat at my computer and composed a letter to my primary care doctor. I handed it to her at Christmas time last year. After she read it she hugged me and said 'I'm so sorry.'
    I hope you are able to get the meds you need to control your pain.


  5. You are so correct about writing a letter. I know that I can never say the right things or remember what I want to say when I get stressed - and for me the white coat is the worst stress. It sounds like your doctor is good though, that he took the criticism and probably learned something. At least he wasn't offended and huffy (in front of you) and that is a good thing. I think you are on the road to a solid relationship, getting to trust is the hardest part. I love the advice of taking an advocate. That has helped me, especially with my stress, so I strongly second that if you have someone you are comfortable taking with you. Thank you for sharing your success.

  6. Fabulous Mary! I am so glad you were able to "talk" to your Doctor and get all of the things ironed out. Now he understands you and that is extremely important. Terrific post.


  7. GREAT Post! And way to speak up for yourself! Hopefully, it's a message he will not forget and you'll have many happy years of a great Team effort!
    And you're absolutely right. Heat plays havock with Fibro. Hopefully, the weather will soon break sending you some relief!

  8. I tell my Dad all the time that the doctor works for him and he has every right to let him know if he's unhappy. Great job!

  9. Wonderful posts. Too many seem afraid to confront or even ask a doctor anything.

  10. Years ago when my 90 year old grandma went for a doctor's visit, she was told to put on a gown. It just about took all of her strength to change clothes when the doctor walked in. He never examined her, and when she asked him about it, he told her it wasn't necessary. Then she went to all of the trouble of getting dressed again, and took the bus home. I'm so glad that you wrote the letter. It's so important for us to be our own advocates. It's nice that you had a good visit with your friends. Julie


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