A Cautionary Tale

Last week, I found myself crushed for time: a friend was coming to visit from Florida, we had a Father’s Day brunch at our house, there were Ave Qtheater tickets, one of the kids needed immediate aid since she was in her own time crunch, the list goes on and on. Taking that into account and not wanting to add that old demon ‘stress’ to the list, I thought I’d do a quick, easy blog about acupuncture/acupressure and Chronic Kidney Disease.

But while researching I discovered a number of sites with online doctors and changed my topic immediately. The ones I clicked on were:

I’m sure there are more, but rather than be an alarmist, I want to be an explainer.

Explainer of what you ask. Not acupuncture or acupressure.  There’s a discussion of how acupressure works in the May 4th blog in SlowItDownCKD 2015 Book Cover (76x113)SlowItDownCKD 2015.  Acupuncture works on the same principle, but using very fine needles rather than pressure. I happily and confidently made use of both before my CKD diagnose and only ceased my treatments when the senior acupuncturist working on me told me these treatments would not help with the CKD. That was over nine years ago. He may have changed his opinion since then.

I want to explain why online doctors are not such a great idea. I can practically see some of you rolling your eyes at me while others are thinking, “Why not?” Okay, maybe they’re legal, but are they ethical? I found a fairly straight forward abstract on ResearchGate which states:

“…online medical consultations pose greater dangers to patients compared to traditional off-line consultations…. while new technologies may aid doctors in making better diagnoses at a distance, they often bring new concerns.”

You can read more about this yourself at https://www.researchgate.net/publication/228234723_Online_Medical_Consultations_Legal_Ethical_and_Social_Perspectives

arthritisI find myself struggling here. I am all in favor of online doctor summaries by your doctors, test reports from your labs, and general medication explanations from the internet. However, I simply cannot understand how someone who has never met you, someone who has not examined your body, someone who has never spoken with you can advise you on your health.

I’ve mentioned before that I have psoriasis, arthritis, neuropathy, sleep apnea, and probably a host of other as-yet-undiagnosed-inflammatory based diseases (This might be a good time to reread last week’s blog about inflammation caused disease. Connected) How can someone who’s never met me take all of this into account when dealing with my health?

A perfect example of what I’m talking about is from the IMPRESSIONS section of my rheumatologist’s recent report,

“This is a very complex patient that presents today with generalized myalgias and arthralgia….Her health history is complicated by carpal tunnel syndrome, neuropathy and chronic kidney disease, stage 3.”

She has not missed a trick. Myalgia, according to the Medical Dictionary at http://medical-dictionary.thefreedictionary.com/myalgia is muscular pain. The Mayo Clinic at http://www.mayoclinic.org/symptoms/joint-pain/basics/definition/sym-20050668 tells us arthralgia is joint pain.  So my muscles and joints hurt. Without seeing me, without testing my joints and muscles, without seeing if the joints are disfigured or the muscles flaccid (for example) how could she help me?

I’m not one to take pain killers, especially NSAIDS which are defined in the glossary of What Is It and How Did I Get It? What is itEarly Stage Chronic Kidney Disease.

“NSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

So I have pain and I can tolerate it. I can’t help but wonder what an online doctor would diagnose. I decided to become a test case. I contacted an online doctor from one of the sites listed above. This is the transcript of that online chat, errors and all.

Welcome! This is a real online-doctor, not a robort. If you have any questions on kidney disease, feel free to type your questions, you will surely         get reply. No consultation fee.

If the online doctors are all busy and you can’t get response for a long time, you can contact us by phone or email. (Contact information                       followed.)

renal-onlinedoctor: Hello, I am renal-onlinedoctor, I am very glad to talk with you!

You: I have pain. What do I do about it?

renal-onlinedoctor: hello, your age and gender?

You: 69 female

renal-onlinedoctor:  ok, what is the current kidney function or creatinine level? do you knowonline doc

You: 50%

renal-onlinedoctor:  ok, Any symptoms? foamy urine, swelling, fatigue, back pain, anemia, itching,  etc

You: Just joint and muscle pain.

renal-onlinedoctor: i see. Do you have Diabetes, high blood pressure, or other problem?

You: HBP, neuropathy, arthritis, psoriasis

renal-onlinedoctor:  ok, What are the current medicines or treatment?

You:  Only hbp meds and arthritis meds.

renal-onlinedoctor: okay  i see. I’d like to send you related info and advice. What is your Email address?

At this point, I ended the chat since I thought I might be deluged with emails if I responded.  Have I proven anything? Only that the online portion of dealing with an online doctor is extremely general.

Where are the questions about my weight? As I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obviously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates, the treatment of, CKD.”IMG_1398

And what about exercise? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I included the following from the American Kidney Fund:

“Exercise can help you stay healthy.  To get the most benefit, exercise for at least 30 minutes, 5 days of the week.”

Yes, it is possible the online doctor may have included such information in the emails(s) he wanted to send me, but how specific to my unique, complex medical situation would they have been… or how specific to yours?

Until next week,

Keep living your life!

Sailing, Naturally

Wow!  I just spent the past three days at a Landmark Wisdom Unlimited course and discovered that my already terrific life is even more than terrific than I thought. The theme was loosely, “What do you like about your life?” I was one of those that just kept going and growing my list again and again. Sharing Chronic Kidney Disease awareness was high on that list.

Talking about sharing, I casually mentioned to my daughter Nima – researcher par excellence – that I was looking for information about natural Nimapreventatives and/or cures for sea sickness.  Most of today’s research came from her immediately jumping on my comment.  Then I casually mentioned to her that she might consider a job as a writer’s research assistant.  She’s a talented person in many areas (I guarantee you this is not just mother pride), and this is one of them.

Bear and I are still about six weeks out from my very first cruise.  I’ve managed all the business, such as the tickets, the land excursions, the hotels for before and after, etc. What I’m still working on is the cautions about motion sickness made by my sister-in-law – Judy Peck. Last week I wrote about over the counter medical solutions and their relationship to CKD.  This week, we go the natural path.IMG_0959 (1)

That said (written), I must caution you in my turn.  Natural aids have neither been tested nor approved by the Federal Drug Administration.  Even if you’re not in favor of the FDA, remember that dosages and timing of natural aids have not been tested either.  Also, see page 87 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

In other words, if anything in today’s blog catches your interest, please check with your nephrologist before you even think of taking whatever the product is.  I am not a doctor, have never claimed to be one, and want you to understand that you and your nephrologist are the final arbitrators of what is safe for your kidneys and what is not.

Ready?  Here we go. First off, we have WebMD at http://www.webmd.com/a-to-z-guides/acupressure-bands-for-motion-sickness-topic-overview. This is the one that caught my eye right away.

These bands use pressure, electricity, or both to stimulate the P6 acupuncture point. This point is located about two finger-widths from the crease on the underside of the wrist. The elastic bands usually have a raised surface that applies pressure on the wrist. Practitioners of acupuncture and acupressure believe stimulation of this point may stop nausea and vomiting.Adult Pack

Reminder: this is not an endorsement of this particular brand, simply a representation of what the band looks like and how it’s used.

Neither side effects nor effectiveness have been proven, so I’m wondering how I can test this before we cruise.  In New York, I would have jumped on the Staten Island ferry.  Wait, I never got seasick on the ferry, so that wouldn’t work.  Hmmm, I didn’t get seasick on the cruises around Manhattan Island either.

Maybe I’m one of those people who just doesn’t get seasick. But just in case you are, I’ll write about what else Nima found for us.

Many thanks to both my daughter for finding this and the HerbalShop.com at http://herbalshop.com/Acupressure/Acupressure_12.html for these

charts showing the acupressure points that can help.

Again, I don’t see how this can harm the kidneys, but I do urge you to talk with your nephrologist beforehand.  I found an equal number of articles in favor of and opposed to acupressure in the treatment of CKD, but none about using it for seasickness if you have CKD.  Interesting.

Now I’m wondering if this is my favorite natural seasickness aid. Of course, you can use a mixture of methods.  By the way, you don’t need to massage all these pressure points.  One or two may do the trick.

Nima also found an interesting (I think) article on yoga for seasickness on The Art of Living site at http://www.artofliving.org/in-en/yoga/health-and-wellness/yoga-for-motion-sickness. However, I have to admit my ignorance.  I understood very little of it since it mentioned positions a non-yogi – like me – would have to research and probably, more realistically, learn from a teacher – say as in a class.

The article didn’t mention CKD so I attempted to research yoga + chronic kidney disease + seasickness.  That didn’t work, so I kept rearranging the order of the search terms and still got no hits. I don’t see how yoga can hurt, other than sprains and strains if it’s all new to you, but I hesitate to say this is okay when I’m not your nephrologist.

Then there was this on Ask Dr. Mao at http://www.askdrmao.com/questions-and-answers/ginger-for-nausea/

Ginger has been used as food and medicine for millennia. Ginger’s modern use dates back to the early 1980s, when a scientist named D. Mowrey noticed that ginger-filled capsules reduced his nausea during an episode of flu. Subsequent research ultimately led to approve ginger being used as a treatment for indigestion and motion sickness.

Cup of Tea in MorningGinger is typically not as effective as standard drugs for motion sickness, but it has the advantage of not causing drowsiness. Some physicians recommend ginger over other motion sickness drugs for older individuals who are unusually sensitive to drowsiness or loss of balance.

However, the National Kidney Foundation does caution that ginger could interfere with your prescription medication.  While not specially aimed at the CKD population, this is the first I noticed any mention of “motion sickness drugs” and “loss of balance” in the same sentence. Odd that a medication aimed at relieving such symptoms can actually be a cause of one.

I have no intention of becoming seasick on our two cruises (the second in the Caribbean in September to celebrate said sister-in-law’s birthday and the 48th anniversary she will be sharing with my brother, Paul), but you know I’ll be bringing the acupressure chart and one of the seasickness bands with me… should my nephrologist concur.

Book Cover

I have a favor to ask: if you have read either of The Book of Blogs: Moderate Stage Chronic Kidney Disease, please write a review onDigital Cover Part 1 Amazon.com.  This is what one reader had to say in his review,

If you have kidney disease, like I do, you can relate to what Gail Rae-Garwood has written here… very useful…

Until next week,Part 2

Keep living your life!