Friday, March 28, 2014

Doctors and coping with multiple ailments

Do you consider your doctor to be the be-all and end-all of all your medical questions? "I need to ask my doctor about that...." Or "let me see what my doctor thinks..." Then you accept their words as guidelines for your life - food, exercise, modifications, etc.

Me, I have so many ailments, I take what my doctors say for the most part with a grain of salt (which is sometimes accompanied by a large margarita). The problem is I have so many ailments that sometimes they can't tell. Why do I have a rash/headache/pain? No idea. Maybe its just a side effect of one of your medications... Or from your blah-blah-blah, we don't really know.

If you are like me and have multiple ailments which cause pain and fatigue, it can be impossible to figure out what causes pain and fatigue. I mean I know the bone deep pain in my arm or leg is from fibromyalgia. And that the pain in my lower back is from degenerating disks. And that the pain in my right SI joint means I need to go back to get those pesky nerves killed off again.

But then I get many other pains that meander through my body of unknown origin. My doctors shrug their shoulders and say keep track of it and monitor frequency, etc. Then when one pain is resolved often I find other pains hidden behind them.

Then when I develop new symptoms, we need to figure out the cause. I can get a preliminary diagnosis of something new and then if I learn about it, I find that some of my other symptoms could be directly related. But unless I test positive for the new ailment, it maybe a pile of hooey and I give up on that. My favorite is 'you don't test positive for it but you probably have a similar unknown ailment'. And the best part is then 'there's nothing we can do about it'.

So I take what I learn at one doctor appointment, do a pile of research, and then I go back to my doctors and ask more questions...

The eternal life of the patient and questions with all my ailments.


Nancy's Point said...

Hi Caroline, I'm sorry you have so many issues. No matter how many a person has, she needs to be her own best advocate. That's the bottom line. Of course, we need to listen and for the most part, I do listen to my doctors and heed their advice. However, cancer has certainly taught me that my opinion matters most and that ultimately the decisions regarding my health are mine.

Anonymous said...

Dear Caroline,
Have you seen the new book by Sarah Ballantyne called "The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body"?

You can see a great video on her website in which she pages through the book, so that you can see what's in it. The author is a scientist who has multiple autoimmune diseases herself.

The first half of the book is all about the scientific evidence of what autoimmune diseases are, and what causes them.

The second half of the book contains diet and other lifestyle recommendations to reverse autoimmune diseases.

There are hundreds of great reviews for the book on amazon. Many are written by people who have the same ailments that you do - no gallbladder, thyroid issues, rheumatoid arthritis, fibromyalgia, etc.

To find the video of the book on the author's website, go to, click on the link for "Sarah's Books", then the link (or photo) for "The Paleo Approach", and then scroll all the way down until you see the video of an open book.

I have no affiliation with the author. I was diagnosed with Hashimoto's thyroid disease and also have breast micro calcifications which might be early DCIS. I have found a lot of good information about breast cancer on your blog.

The diet/lifestyle recommendations in "The Paleo Approach" have really helped me with my thyroid issues.

I thought that I would let you know about this book because there is a good chance that it would help you, too (if in no other way than in being a great scientific reference book explaining how autoimmune diseases work), and because you have provided me (although you didn't know it) with valuable information, laughs, and at times, reassurance and solace.

Thank you for your blog!

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...