Too much advice = too much confusion

With every ailment, comes a list of advice. Do this, don't do that; eat this, don't eat that; these exercises, not those.That's fine with one ailment. But with my list of ailments, it quickly gets very confusing.

I subscribe to multiple Google Alerts - one for each ailment. Each one sends me a new list each day of articles or blog posts or some other piece of information found on line on each topic. The daily melange can include anything from somebody ran a race to fund raise for someone with one of the ailments to a medical research advancement. So there can be everything.

Including advice. Today's advice included diet secrets for arthritis, prescription review for fibromyalgia, a male oncologist who got breast cancer, and some woman and her family get lots of support after her thyroid cancer diagnosis. First of all its too much information for me to digest this early in the day, never mind later in the day.

Second of all, if I tried to select a specific topic (food/lifestyle, for example), it gets very confusing. Eat this, not that; drink this, not that; do cardio, skip cardio and do yoga, but my doctor says no yoga. Aaarrrgggghhh!

I give slightly more weight to advice from medical professionals, especially from my doctors. If one doctor gives me advice that conflicts with another doctor, I will ask what I should do.

So how do I handle all this? I do what feels right for me. That's the only way to deal with the piles of advice.

Dr Google, Dr Oz, and other bad resources

I often tell people to step away from Dr Google. But sometimes he sucks you in and you can't help it. Then there is Dr Oz who will be happy to get you to buy green coffee beans or something that someone supposedly believes will cure cancer. Well maybe Dr Oz isn't that bad but I think he's smarmy (definition: excessively or unctuously flattering, ingratiating, servile, etc.)

Finally we have those online symptom checkers to help us figure out what's wrong with us instead of going to the doctor. But they are usually wrong as well.  I admit to using online symptom checkers to see if I can figure out what is wrong with me. But since I have so many other things wrong with me, I usually ignore them too.

Now new research shows how bad the symptom checkers can be. There are many good health websites, such as WebMD, maybe even your hospital. But the symptom checkers where they try to diagnose what you have when you select your symptoms, they are not so good. They aren't so great at figuring out what is wrong with you. And they don't always send you to the doctor when you should go and sometimes send you to the doctor unnecessarily. Use your common sense instead. Or if you aren't sure on your common sense, phone a friend.

Further proof Dr Google isn't very good

Another story has come to light on how Dr Google isn't the best adviser for medical stuff. It turns out most people use Wikipedia or Web MD for information on drugs. A new story in the New England Journal of Medicine published recently talks about it.

'"Despite debates over its credibility, Wikipedia is reportedly the most frequently consulted online health care resource globally,” the authors write. “Wikipedia pages typically appear among the top few Google search results and are among the references most likely to be checked by internet users.” Wikipedia, along with Google and WebMD, is where more than half of all Americans turn to for health information, according to the report. 

Researchers found that when the FDA issues a drug safety warning, Google searches about that drug increase 82% on average in the following week. Wikipedia pages about the drug see a 175% increase in views on the day of the announcement.'

The cause for concern is that the FDA does not issue drug safety warnings and update Wikipedia - its left to the general public. WebMD is a little better but it is not proactively updated with things like drug safety warnings. If you need that kind of information you need to follow the FDA on Twitter. So the call is to get the FDA to reevaluate their social media presence''.

I'm not sure the problem is with the FDA's social media presence than there is with that fact that so many people go to Wikipedia for medical information. Wikipedia has credibility issues. It is not based on any specific information but on updates from the community. I never use Wikipedia for medical stuff because I do not trust it.

Dr Google insists in on displaying Wikipedia results prominently in so many search results so of course it is used so frequently. I think we need to learn to use more common sense and switch from Wikipedia to WebMD and other more credible sources.

Time to take a break from Dr. Google

Dr. Google can kill us all off in our heads in a matter of seconds or minutes (depending on the speed of your internet provider). I have new ailments that I have been asking Dr. Google about. I also have continued to ask Dr Google about my other ailments. I have totally grossed out myself and made myself decide I will end up in chronic pain in a wheelchair in a matter of weeks.

I am not showing your actual links because that would mean finding the disgusting things again and going through it all so you will have to suffer with my descriptions.

• I found a picture of a woman with uncontrolled lymphedema in her arm. On one side she looked light a normal slight build, slender woman. On the other, her arm looked like it belonged to someone weighing about 400 lbs. 
• Then I found some pictures of what rheumatoid can do to one's feet since my feet really hurt recently. They showed all these x-rays of feet wit plates in them, turned up toes, collapsed arches, etc. 
• Then I found pictures of flesh eaten through to bone by rheumatoid.
• Then I found articles on the latest conflicting research on breast cancer screening and its value for older women.
• Then I found a comment page on people coping with fibromyalgia
• Then I found a list of sayings by people on 'you know when you have rheumatoid...' and realized I could agree with all of them.
• And more.

The more ailments you have the faster and easier you can kill yourself off.I need to step away from Dr. Google (and I need a trip to a Caribbean beach). But getting away from Dr. Google is easier and cheaper.

Evil Dr Google

I have posted about the evils of Dr Google before. As you can see from the image above (stolen borrowed from Facebook), I am not alone. My doctors are working on another mysterious medical ailment for me and I have an appointment in a couple of weeks to figure out what it is. When I know what it is I am sure I will blog about it. All I can say now is that its related to all the pain in my body that does not seem to be limited to my back.

While why I wait for that appointment, I am spending too much time on Dr Google seeing if I can self diagnose myself. This is a very BAD thing to do. I need to stay away from Dr Google in the meantime. It is so tempting to hop online and see if I can figure out what it is before the doctor does. Dr. Google is EVIL. I need more patience.

Stepping away from Dr Google

It is time to step away from Dr Google. Dr Google can diagnose me with life threatening ailments all too easily. I do not believe Dr Google went to medical school, nor does s/he have a good bedside manner. Dr Google tells it like it is with no sugar coating. Dr Google says things like 'the prognosis for patients with (fill in the blank) is generally poor with low quality of life expected' and 'there is no known cure for (fill in the blank), treatment usually focuses on management of symptoms'. Dr Google sucks.

How well do I know Dr Google? Too well. I get a minor ailment - cold fingers which turn white. This is Raynaud's syndrome. Nothing that can be done about it except possibly taking blood pressure medication. Generally a benign lifetime ailment which strikes people in their 20's and 30's. So I'm a little unique that I got it later in life (but I am only 37 right now - I decided that is a good age - I was 29 for a long time). But if you ask Dr Google it can be related to Sjogrens, lupus and rheumatoid arthritis. My mind then tells me Dr Google has just diagnosed me with one or all of the above.

Then there was a little sore in my mouth which turned out to be a nothing - just a weird piece of scar tissue. Dr Google (with a little help from the dentist with no bedside manner) had me convinced it was cancer.

Then I start adding up symptoms and I have many more ailments. This one plus that one plus that one plus that one tell me that the combination means something new that I will stuck with. I can take any symptom checker on the planet and end up terminally ill in less than ten minutes.

So why do I spend so much time with Dr Google? Dr Google is far easier to reach than any other doctor. Dr Google lives on my laptop and smart phone. Dr Google is accessible 24/7. Dr Google doesn't have a secretary screening calls or putting email into spam folders.

I need to step away from Dr Google and wait for my annual physical in June. I refuse to go to my PCP any sooner unless I am dripping blood. I have no new life threatening ailments. I will be fine, unless Dr Google tells me otherwise.

Finding cancer information

There is lots of information out there on cancer. Some of it is very good and some of it is a load of crap. Figuring out how to find the good stuff is important. Here are a few tips:

• Use reputable sites. Look for ones which have some credentials behind them. The American Cancer Society is a great place to start at www.cancer.org. Also try the websites for specialized cancer medical centers such as Dana Farber, Mayo Clinic, MD Anderson, Cancer Treatment Centers of America.
• Medical blogs and newsletters. Many of these same sites have newsletters or blogs focused on cancer in addition to more general ones. Dana Farber has just launched a cancer blog. Mayo Clinic has a Living with Cancer blog and newsletter. Johns Hopkins has a specialized monthly newsletter for breast cancer.
• General medical sites such as WebMD can provide solid information on procedures and tests even if they do not have as much detail on your type of cancer.
• Ask the Experts sections can decipher the technical side of the information you find as well. See this section on the Mayo Clinic's site.
• Cancer type specific information can be found at patient associations or non profits. Google 'cancer name' and the word association to find yours. A list of some of them can be found here.
• Your hospital's website. I am treated at Lahey Clinic and they have a lot of information on ailments and procedures/medical misadventures/tests. I usually look up every little medical adventure on their site before I go to have it. There are standards for each procedure or test but there may be different variations on things like - needing a ride home or how long it will take or preparation - that are specific to where you are treated.
• A very good place to ask where to find information online is your doctor. They know where to get the right information.

Once you get to a site, look for their background before you believe anything you may read there:

• Red flags include broken English, misspellings, lack of organization, broken links.
• Look for date of last updates - on the very bottom line of the home page is usually a copyright date. Websites can stay up long after the creators are gone. 
• Look for an About Us or other descriptive page providing background on the posters. If they have no credentials or aren't medical professionals, their cancer information has no credibility.
• Any site claiming to have a cure, treatment, etc that can heal you if you send them money up front is a hoax. If it is a real treatment your doctor would know about it, you wouldn't need to buy it online.

One of the interesting parts of having a blog is the comments I receive. I frequently get comments from weird medical people telling me about their cures or wanting me to help them by publicizing their book or association or telling me how they can help me. I usually just delete them and/or block them. Yesterday a gentleman in Australia commented that he wants to talk to me to tell me about the beneficial side of cancer cells. Hmmm... I checked his credentials and he used to be a chiropractor and now promotes mind/body wellness which is all well and good but what does he know about cancer anyway? Maybe he has studied acupuncture and other alternative therapies but I won't waste my time.

There is lots of information out there but you need to check it out before you read it. If it seems too good to be true, it probably is.

Researching online

I know I have written about Dr. Google and his flaws before. Dr. Google can tell you that you have ten terminal ailments along with psoriasis, athletes foot, head lice and bed bugs when all you have is a mosquito bite. Dr. Google can be very scary. Dr. Google is not a real doctor.

There is so much medical information on line and it covers the gamut of good solid information to complete quackery and scams plus a lot of well meaning people who are sure that what worked for them will definitely work for you. You need to sort through what is there and figure out what to believe and what to ignore. My personal recommendation is to stick with the credible sites of WebMD, Mayo Clinic, BreastCancer.org, American Cancer Society, possibly your own hospital's web page etc. I would skip any website trying to sell you something that will cure  you (or offers you a share in a Nigerian inheritance). Yes you can get lots of good solid information online. And an educated patient is a comfortable position to be in.

Online message boards can provide a lot of support from others coping with the same ailment and should be included in your online research. If you read to what the patients say you can learn how to cope with side effects and the ups and downs of treatment. Its not that patients are doctors and can give you advice but the general consensus you get from what everyone else is going through offers a different type of information. A group consensus can be just as helpful as online medical advice.

The New York Times published an article earlier this week on this topic. The author feels his life was saved by what he learned online. He kept reading about the same doctor for his type of cancer. He ended up going to see him a thousand miles away and felt that this doctor gave him the life saving course of treatment. (One comment on the article is that it recommends going to ACOR.org for help - that front page hasn't been updated since 2002 and it is full of broken links so I think you can skip it.)

I know I have learned a lot on line from message boards in addition to receiving (and giving I hope) a lot of support. They definitely helped balance out the ups and downs of cancer diagnosis and treatment. They also encouraged me to ask more questions of my doctors and educate myself so I was more comfortable with my course of treatments.

Modern advances for sick people

We know that medical advances have saved many lives. That is all well and good but the more important part is modern conveniences for us sick people so life is easier. If they can't cure us, we still should be able to live our lives comfortably.

Modern advances I couldn't live without:

- A VCR with a timer and now a DVR - I do not have to stay up late to watch my shows or worry about napping through them. (Or missing them because of a stupid doctor appointment.) They are always there waiting for me. Or I can even watch them online.

- Restaurant delivery services - why go out and sit in a chair that is not good for your bad back when they can bring you the food and you can eat it sitting on your couch with your feet up?

- Ice packs for pain relief. Especially in heat waves. These are wonderful. They are a little more difficult to deal with in January but we can always switch to heating pads.

- The internet. Its much easier to be sick at home when you can be connected to the outside world online and keep up with all your friends - and look up all your symptoms so you can develop a good case of Googlechondria.

- Mail order prescriptions - standing in line at the pharmacy is so passe. I am moving more and more prescriptions online to save money.

While I do appreciate medical advances and treatments, my life goes on when I am not at the doctor and I appreciate the comforts of home.

I'm cranky

I'm cranky this week. I have a lot going on and am feeling stressed. This is what is making me cranky:

1. Blogger was down for most of two days. I find this one of the most epic cases of mismanagement. Yes it is a free service we use to host our blogs but it is part of Google's money making tools (where they are trying to take over the world) but they just severely shot themselves in the foot. Apparently there were some upgrades and maintenance issues and things went wrong and the Blogger service was done for parts of Thursday and most of Friday with no real updates or explanation. I am ready to move my blog to a provider which actually runs parallel servers to ensure these issues don't happen. Its not the problems with service but the lack of communication through the issues. Just imagine if the Google search engine was down for the same amount of time. Anyway, I couldn't blog yesterday and I always blog (unless I am in a part of the world without internet) and it upset my routine and made me cranky.


2. On Wednesday I posted about my wonderful series of doctor appointments and how much fun I had with them on Tuesday (but you couldn't read it because Blogger was down). They were so much fun and then my doctor called me Wednesday night and I couldn't get hold of her to call back until Thursday morning. When doctors call you at home at night it is always stressful. Apparently my blood tests, EKG, and chest x-ray were normal (or as normal as I can be) but my PCP spoke with my endocrinologist and they want me to slightly adjust my thyroid hormone levels down to see if it impacts my heart rate and then have more blood work in six weeks. But if my thyroid level gets lower, its harder to lose weight or not gain weight and one of the things which stresses your heart is your weight. I also have an Echo cardiogram in a few weeks to see if this tells us any more information. So I am still in 'wait and see' for longer.


3. I am not looking forward to a series of shots under my knee cap. I was stupid and looked up what they do and then someone else told me how painful they were for her husband.


4. I am overscheduled. I have entirely too much to do in the next few weeks. I have personal stuff to do. I have volunteer work. I have doctor appointments. I have a lot of work to do. I have meetings. I have events for work. And it all has to be done in the next ten days.


5. I have knee pain, back pain, SI joint pain and don't feel like sucking it up and coping so I am whining.


6. I am not getting enough sleep. I wake up at night and have a very difficult time getting back to sleep. And last night just as I did get back to sleep the (stupid) cat knocked over my water glass all over the floor. He went back to sleep. I cleaned up the mess.

But otherwise I am fine and there were no cancer cooties to be found at my physical.

Social networks and medical privacy

So you have a Facebook account, a Twitter account, a blog, and text and email everyone you know. You share things about your life, maybe not all, but probably more than you think. You complain about your life, tell everyone when you have a cold, a customer made you mad, your boss ticked you off, or your husband brought you flowers. You say happy birthday to your friends and commiserate over a job loss or death in the family.

But what if your doctor was on line as much as you and complained about patients or a work situation - which included you - as their patient.

This issue is now coming to the forefront for many people who use the internet both personally and professionally. The technical advice is to 'create separate personal and professional accounts' for everything. Well I have tried that and the lines are blurred. Everything is tied back to specific email addresses and what if you have an account in one place personally but need to use it professionally?

Hospitals are beginning to recognize this as an issue. I see it as a fairly significant issue myself. I expect my medical privacy to be preserved. I would not want my doctor discussing my medical issues on the open internet, nor would I want pictures of me posted by my doctor.

The free for all, no privacy, no rules of the wild west internet are in direct conflict with the guarded privacy found in medicine, banking, stock insider deals, and more areas. It will be interesting to see how this all unfolds in the coming years.

Is the internet a substitute for the telephone?

So I created a blog for family and friends to follow my medical adventures, first with breast cancer and then with all my other medical maladies. It allows me to opine and whine to my heart's content. It also was meant to allow me to communicate my medical crap (that technical word again) to those who I thought should know in away which allowed me not to repeat the same thing again and again. I also get to have some control over how I convey the news - sometimes I don't tell things until I am ready to. Its a tiny bit of control over the chaos of my medical issues.

Some people started reading my blog and stopped. Some people never started reading my blog - some simply don't go on line at home and can't do personal computer things at work, some just don't care to keep up with it, what ever their reason, that's not how they chose to keep up. Some people read my blog regularly, some read it occasionally. What's funny with the people who read my blog regularly, when I hear from them, sometimes I think that they think we have been talking regularly so when we do talk, the conversations are punctuated with 'didn't I tell you that already?' I see the humor in it.

There are people who don't read my blog and we keep up on Facebook as I whine there regularly. I don't know how I survived without FB. I am back in touch with my elementary school friends, as well as college friends, and cancer friends. And relatives are there too. My mother just got on FB to keep up with my cousin, who is spending the summer in Alaska, and her photographs - which she posts weekly when she is actually near an internet site. I am also on LinkedIn and several other online communities. Actually I am on so many online communities I can't keep up unless they send me reminders and updates - or I forget about them. (And how do I keep track of all these passwords - that's another story all together...)

Then there are the people I never hear from - who don't read my blog, don't go on FB,dont go on LinkedIn or other sites, and and never pick up the phone. Are they supposed to be friends? But I digress - that's another story.

But then there is a whole world of people out there who care about me - who I have never met - and who read my blog or stay in touch on FB. They are friends of friends and cancer friends who I connected with on varying online communities. They are friends who I will probably never meet.

But where is the telephone in all this? We know text has replaced phone calls as a means of communication. I don't text much so that doesn't really count for me. But the phone doesn't ring my either. I do get regular phone calls reminding me about doctor appointments and follow up from doctor offices. But I don't talk much on the phone anymore.

Is the internet replacing the telephone in my day to day communication? I think it is. I can communicate with many at once instead of calling one at a time. And then what I do online is waiting for others when they log on. The convenience of the internet vs. leaving voicemail for one person.

How did we do it?

Yesterday (except for a tiny walk - more on that later) I spent ensconced on the living room sofa, 'working' on my laptop and watching shows on the DVR. I also spent time on Facebook, reading the news, checking email, etc but I did get a lot of work done. Then it occurred to me, how did we cope with being sick without the internet and the DVR? The DVR is wonderful, if you doze off during a show, you can back it up and you don't have to annoy yourself watching commercials. Yes I remember life before the internet.

In my childhood, it was a special treat when we stayed home sick from school - we got ginger ale and could watch Romper Room! My father talks about in the 1930s waking up in the hospital post op ward full of crying children - who weren't given any pain meds post surgery. My grandmother told wonderful stories about the summer she spent camped out in the backyard with her sister and a nurse in quarantine for scarlet fever. Times have changed.

Now, we have the internet, telephones, DVRs, and the world at our fingertips in case of a touch of boredom while not feeling well. But what did everyone do without these on the days when you weren't feeling well enough to read a book, be artistic or creative, or do much of anything? In some ways its hard to imagine but then in other days, it would be nice to be 'unplugged' at times.

Yesterday I spent the day on the couch because I had so much fun on Thursday at the hospital. When I got up yesterday I could barely walk, never mind bend down and feed the cat - he was very upset with me. I started taking my pain meds, 1 pill three times a day, and decided I was experiencing the 'new pain in my hip and legs' that was listed on the discharge instructions as a reason to call the doctor. I left a message around 830. Then I spent the morning with my hip on an ice pack, but still not feeding the cat without pain. I took another pain pill around lunch time and was doing okay.

Then I made a mistake. I attempted to walk five minutes to the post office and back. I hobbled back in excruciating pain and called the doctor's office again. Magically I actually spoke to the doctor. He said some pain in my leg was normal and was radiating pain - my knee hurt... He did say I could up my pain meds to two pills four times a day and to continue the icing and not to do anything considered exercise. Like don't go for any walks. It is more manageable then. I also need to call the doctor's office on Monday to tell them how I am doing. That is a sign I am having more pain than I should...

This morning it was fine until I decided to get out of bed. I thought I could deal with only one pain pill but shortly I will hobble up stairs for a second one. My plans for the day consist of a duplicate of yesterday except less work and more play. I will even go get my hair cut today. Its across the street from the post office so maybe I'll walk - I get to sit down and rest for half an hour before walking home. There's never any parking and I feel stupid driving two blocks. Besides if I am on pain medication, can I drive?