Bottom Line

I get a publication called Bottom Line Health, which is a monthly publication, full of tidbits on a variety of health related topics, including the most recent research findings.  I found out about it from one of my husband's issues of Bottom Line Personal.  That publication, which comes every 2 weeks, has all kinds of info and updates on topics far and wide- health, money, travel, business, and almost any topic you can think of, and many I would not have thought of.  I really enjoy reading both of these publications.
They also have other publications, Bottom Line Natural Healing, Bottom Line Retirement, and Bottom Line Wealth (These last 2 are no longer being published, but they have articles published in the past available online).  Their website, www.bottomlinesecrets.com has lots of good info, as well.  I just signed up to receive their free e-letters, on three topics, secrets (general info), health, and women's health.  I expect these to be as interesting and helpful as their print publications.  Each of the publications contain in depth articles as well as little tidbits, so you get alot for your buck. The articles are written by their staff of experts, many of them doctors, and they also interview other people to get a broader knowledge base.
I recommend looking into these publications, literally.

ICE

Just a short post today about ICE.  This is a great lifesaving development.  It stands for 'In Case of Emergency'.  In your phone or whatever device you may carry around in which you save phone numbers, add an entry under ICE or I.C.E., and put the name and phone number(s) of the person or people who should be contacted in case you are ever in an accident, get sick, or are in any way incapacitated.  Emergency workers will look for this entry, and contact that person to let them know of your condition.

Under ICE in both my cell phone (which I seldom use) and my IPod Touch I have my husband's name and contact info. I was recently talking to someone who is married to a firefighter, and she said they really do look for this info. It makes it much easier for them to know who to contact, and it takes some worry out of life, knowing that this info is readily handy when needed (of course, we all hope it won't be needed).  

I know this is being used in the US.  If you live in another country, check and see if there is a similar program where you live.  If not, you might want to try to get it started. 

Difficulty Getting a Diagnosis

A person goes to his/her doctor to find out why (s)he is sick.  (S)he tells the doctor the symptoms, the doctor has to figure out what the problem is before beginning treatment.  The doctor orders blood and other tests to rule in or rule out likely illnesses and to make the diagnosis.   Doctors are trained that ‘When you hear hoof beats, think horses, not zebras’.  This means that the patient is more likely to have something common, rather than something exotic. 

If lab tests don’t show any problem, the doctor may tell the patient there is nothing wrong, when in actuality, it may be that the right lab test has not yet been developed.  The patient may be viewed as a hypochondriac.  They may be described as doctor shopping for going from one doctor to another in their quest to find someone who can figure out what is wrong with them.  Many illnesses take years to be diagnosed, meanwhile, the patient has to be ‘patient’.  (Sjogren’s syndrome is one of the longest, averaging 6-7 years)  Many illnesses overlap, or mimic each other, and patients are often misdiagnosed, and may be given medicine that does not help, and may even harm them.  

Notorious for difficulty in diagnosis are autoimmune illnesses, which often overlap.  There are blood tests for many of them, but these blood tests are not definitive.  ANA is one blood test that is common to several autoimmune illnesses, including Sjogren’s syndrome and Lupus.  SS-A and SS-B are more specific to Sjogren’s, but can also be found in people with Lupus.

One of the tricky things about blood tests for autoimmune diseases is that a negative blood test does not necessarily mean that the disease isn’t present.  When I was first diagnosed with Sjogren’s, I had a positive ANA and positive SS-A.  In more recent blood tests the ANA has remained positive, but the SS-A has sometimes been positive, sometimes not.  I read somewhere that these markers will start out positive early on in the disease process, and then become negative as the illness progresses.  I don’t know that there is any consensus on this.  Sometimes people are told they don’t have a particular disease based on negative blood tests.  Doctors who believe this don’t understand the complexities of these diseases, and are doing their patients a major disservice.  A doctor who understands these diseases will know that sometimes the disease is there even if the blood tests are negative, and will make a diagnosis based on symptoms.  I know of some people who are savvy enough to know this, and have told their doctor they disagree with the ‘non-diagnosis’.  Unfortunately, most people who are searching for a diagnosis for their symptoms don’t know so much, and believe their doctor when told they don’t have a particular disease.  They then continue on the search, spending years of their life ill, because no one will treat them if nothing is diagnosed.

The availability of so much information at our fingertips, by way of the internet, has changed the dynamics of finding a diagnosis.  It has helped some people to diagnose themselves; they then go to a doctor to confirm the diagnosis.  For other people, it has muddied the waters, and not only confused them, but also scared them out of their wits with the possibilities they find. 

My suggestion, if you have not yet gotten a diagnosis for what ails you, is to search the internet, but have a large grain of salt handy.  Information on the internet is not always accurate.  If you think you have found something that pertains to you, print it out, and take it with you to your doctor.   If your doctor disregards what you brought in, ask for an explanation why.  They may have good reasons that you did not know about.  On the other hand, doctors have egos just like the rest of us, and some doctors don’t like patients who think they know something.  Go with your gut.  If your doctor doesn’t take you seriously, find another doctor.  Many of us had to visit several doctors before finding a diagnosis.  I was diagnosed when my doctor was out and I had to see someone else in his practice.  With my own doctor, I only brought up the current issues.  With this new doctor, I gave him some background to bring him up to speed with the various things going on with me.  He put it all together, and said it sounded like I had Sjogren’s syndrome, and he sent me to a rheumatologist to confirm.  

This brings me to another suggestion.  Try going to a specialist in the area of what you think may be the problem.   For example, a rheumatologist works with arthritis and autoimmune syndromes, and an endocrinologist works with hormones, treating a variety of diseases, including diabetes.

Once you are diagnosed, learn as much as you can about your disease.  Get involved with national organizations, local support groups and online communities.  These groups will help you learn about and get more comfortable with your diagnosis.  They will understand what you are going through better than anyone without your disease can.  Educate others about your disease.  They will not only understand you better, but over time, if enough of us educate others, autoimmunity and other diseases will be better understood by the general public.  They will be more accepting of our needs, more comfortable around us ‘sickies’, and maybe, someday, people will get diagnosed and treated earlier.

S-t-r-e-t-c-h Your Muscles

Stretching benefits the body in so many ways.  When I was younger, they told us to stretch before exercising so we wouldn’t hurt ourselves.  Now we are told to warm up before stretching so we don’t hurt ourselves.  These both make sense, if you think about it.  Warming up first loosens the muscle fibers, so you can stretch more fully without tearing the fibers.  Stretching loosens the muscles further, so you can exercise more intensely with less chance of muscle tears.  

One of the groups that I lead at my job on two inpatient psych units is exercise.  I have music, and we do a variety of stretches.  I focus on the neck and shoulders, because those muscles can get really tense when you are stressed.  I do stretches for all the muscle groups, starting with the head, and working the way down to the feet.  I sometimes have people tell me that they can’t exercise for one reason or another.  I have an answer for just about every excuse:  They can sit in a chair to exercise, they can choose which exercises to do and which not to do, and I can modify most of the exercises to fit different abilities and disabilities. 

On the Sjogren’s Syndrome email list, SS-L, there are people who say they can’t exercise because it makes their symptoms worse.  Even to them, I would say that exercise can be helpful, but it depends on how you define exercise.  I think that no matter what your physical status, stretching is good for you.  You may not be able to do aerobics or strengthening exercises, but stretches can be as gentle or as intense as you want.  Stretches help to relax tense muscles and they prevent or decrease contractures.  They help you to maintain your range of motion so you can reach up to a top shelf or bend down to put your shoes on. 

I have had tendonitis in my elbow and plantar fasciitis in my foot for months.  I have tried injections (which helped the most of anything, but only temporarily), medications, various rub on concoctions and massage.  Most recently, I have been stretching the related muscles several times each day, and I think that both the tendonitis and the fasciitis may be turning a corner, and starting to ease. 

www.YouTube.com is a wonderful resource for all kinds of information.   I may write more about it in a future post.  For now, I will just tell you that some of the stretches I have been doing were shown to me by my massage therapist, others I learned from YouTube.  Make sure you use common sense when getting information from YouTube.  Anyone can post a video there, most are good and helpful, but some are just the opinion of the creator, and have no basis in reality.

As I write this post, my kitten is sleeping on the couch next to me.  Cats naturally stretch throughout the day, rounding their back, or extending their front paws and sticking their butt up in the air.  My kitten has stretched several times in the last few minutes, like she is demonstrating for me to write about her.  We can learn alot from watching our pets. We should stretch throughout the day, whenever we get up from sitting or lying down, and especially when we ave been in the same position for awhile.  A good example is to get up and stretch out every half hour when you are working on your computer or reading.. Wikihow has good instructions for a variety of stretches, as well as information about stretching properly.  

Healing Versus Curing

In Western society, the field of medicine is traditionally viewed as pure science.  If the body is ill or injured, it has to be fixed or cured, put back into its previous state.  To do so, chemicals, in the form of medicines, are prescribed.  Many illnesses would resolve themselves in the course of time with or without medicines.  In that case, medicines may be used to make the person more comfortable while the body heals itself (example- a cold).  Other illnesses do heal faster or heal only with medicines. 

What happens if the illness or injury can’t be cured by medicines, or by any other means that the doctor prescribes?  The doctor, who is used to being able to cure his patients, may become frustrated.  Many doctors don’t like treating patients with chronic illnesses, because they feel ineffectual and impotent to help them. 

It takes a special kind of doctor to really be good at treating chronic illness.  (S)he needs to be able to accept that (s)he won’t be able to cure, but that there are still many things that can be done to help the patient obtain and maintain the maximal possible health, given the circumstances.  Success is measured in smaller increments, and often success is a matter of keeping the patient from getting worse, rather than being able to make the patient better.  If there are medications for that particular illness, it can be a challenge to find the right one, or the right combination, and the right dosage. 

Healing and curing are not the same thing.  Curing implies that the illness is gone.  Healing implies a wholeness, a peacefulness with life, even if the illness is still there.  Healing improves the quality of life whether curing is a possibility or not.  Healing is often not achieved with medicines, but with techniques that touch the soul, or the psyche. 

I have written about guided imagery and visualization, mindfulness, pet therapy, massage and about using art to heal.  Illness and pain can feel huge, can overpower everything else in life, until it seems that they are all that exists.  These healing techniques can help a person to view their illness differently.  They can put things in perspective, making the illness less scary and overwhelming.  This is healing.  Anything that makes your burden easier to carry is healing.  

Other techniques used for healing include Reiki, acupuncture, crystals, prayer, chakras, etc.  I don't have as much experience with these, but I am sure there is abundant info on the web if you are interested.  The topics I write about won't cure you, but they can help you to heal.

The Alexander Technique

I heard about the Alexander Technique several years ago.  To really do it right, you have to go to an Alexander trained teacher, who will work with you one on one to teach you how to move your body correctly.  The little bit that I know about it and have applied has helped me, though I usually don't remember to apply it. This will be a brief introduction, with links to sites that will tell you more.
The Alexander Technique was devised by an Australian actor named F. M. Alexander in the late 19th century.  He kept losing his voice on stage, and discovered it was because of his posture.  Many actors, musicians singers and sports players have been through the training over the years.  It helps them to use their bodies more efficiently, and to perform better.
If you watch how children move, you will see that their heads are directly above their necks, not thrust forward, as many adults are; they crouch by bending their knees and hips, not their waists, as adults tend to do.  Their movements are fluid and natural, with muscles and joints loose and relaxed.  As we grow up, we tend to hunch over our book or our computer, muscles tensed, then wonder why we hurt.  The way we move is automatic,  habits.developed over the years.  This video illustrates how our bodies move, versus how they should move.
The Alexander Technique reteaches the body to move as we did as children.  I takes practice, and I can see the benefits of having a trained teacher to work with.  The basic concept is to release the tension in your muscles, and allow them to lengthen.  The alignment of the head, neck and back is key.  Imagine how women align their bodies in order to carry large loads on their heads.  If they had their heads forward, as many Americans tend to do, their necks would hurt in almost immediately..
Stand up as you normally do.  When someone tells you to stand up straight, the tendency is to push the chest forward, and the head back.  That can be just as tiring as the normal slouched posture.  Instead, try this:  'Let the neck be free;' 'Let the head go forwards and up'; 'Allow the back to lengthen and widen.'  Alexander called these his 'conscious projections', and had his students memorize and practice these words until they were automatic.
The head, neck and back alignment is the main thing that I have learned and applied.  I have had months of intense pain around my right scapula (shoulder blade). One thing that helped, and I think ultimately got rid of this pain was readjusting my posture.  While sitting or standing, I would take a good breath in, and relax my muscles as I breathed out.  I would imagine a string from the back/top of my head gently pulling upward, straightening and lengthening my spine. Breathing in again, I would envision the air spreading throughout my neck and upper back, leaving everything loose and relaxed.  Here is a good explanation of how the Alexander Technique can help with chronic pain.
The Alexander Technique has very specific instructions for standing, sitting, laying down, getting up, and almost any activity you might want to do. The ideal would be to have a trained instructor teach you, but that can be expensive.    Here are some books and a DVD that can help you learn on your own.

How To Explain Your Illness To Others, Part 2

For many of us living with chronic illness, the two biggest problems are fatigue and pain.  In my most recent post, I wrote about explaining fatigue to others.  In this post, I want to share some thoughts on explaining chronic pain to others.  Everyone experiences pain differently.  For most people, pain is a temporary condition, with a specific cause, and options for treatment.  They take aspirin, rub on some Ben Gay, and within 20 minutes, or maybe a few days, the pain is gone.  They don't understand why our pain doesn't go away.  They may thing we are exaggerating, or just like to complain.  
Even for each of us with chronic pain, our experience is different.  Some people have constant, unrelenting pain, others have intermittent pain, or pain only when they do certain actions.  Some have pain that is burning, or shooting, or stabbing, or aching.  It can be sharp or dull, or throbbing.  Most people can understand these descriptions of pain.  What they can't understand is what it is like to have pain and not be able to get rid of it, no matter what we do, to live with it 24/7.
Here is a great description of living with pain.  I found this on a blog called the How to Cope With Pain Blog.  He has a Blog Carnival every month, where he lists a number of blogs he as found that he thinks are worth reading. (They usually are).  One of the blogs he listed this month was 30 things about my invisible illness you may not know.  It is long, but worth reading.  One section of it describes living with chronic pain.  You can feel the frustration in her words of people not understanding.  I couldn't find the name of the person who wrote this, but her blog is called Kids By Hand.

I think people would also be surprised to know that pain doesn’t have to be an excruciating pain to have a profound effect on your life. If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger. But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe. “You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

When I see someone struggling with a pebble, I want to hug them and say “You’re not alone; I have a pebble, too.”

It won’t make their pain any less. But it will make it less frightening. Less lonely. Hopefully they will begin to see all the things they can do in spite of their pain, rather than all the things they have had to give up against their will. Hopefully they will see that, in spite of the pebble, they can still be the kind of person they want to be. That, even with a pebble, life is still good.

Just thinking about always having a pebble in the shoe hurts.  I never thought about it that way, but it makes sense.  Every time I use my right arm, it hurts, every time I step on my left foot, it hurts.  I guess my pain is like constantly having a pebble in my shoe.  I have times when I don't hurt (like right now, sitting in my lounge chair with my feet up), but I hurt whenever I move or go to do anything.
I would like to hear from my readers:  How do you describe your fatigue, pain, or other symptoms to others?

How To Explain Your Illness To Others, Part 1

My  son, who is working on his doctorate in psychology at Boston U., (never waste a chance to brag on your kids) has a seizure disorder.  Recently, he was asked by someone with a child with a seizure disorder to explain what it was like, because her child was too young to put it into words.  He wrote a very thorough description, and shared it with us (his dad and me). He and I then had an email discussion on how people without a certain malady can't really know what it is like. That is why support groups are so important for alot of people.  They have a group of people who really understand what they are going through.
A friend and I a few years ago compared notes on how we describe our fatigue to others.  She said that she felt like someone had cut the tips of all her fingers off, and the blood had all drained out.  I said I felt like gravity had been quadrupled, the oxygen level in the air had been cut in half, and my brain was filled with marshmallow creme.  I have also heard people describe it as like having the flu all the time.  I am not sure exactly what they mean by this.  I don't think they have the feeling of sickness you get with the flu, but the wrung out achy part sure fits.
I want to share with you a couple of really good descriptions I have found of what it is like living with chronic illness.   The first one is the spoon theory, by Christine Miserandino, who has lupus, and a wonderful, fun website, www.butyoudontlooksick.com       She was in a diner with a friend, and her friend wanted to know what it felt like to always be sick.  After struggling for a bit, Christine grabbed a handful of spoons from surrounding tables, and came up with the spoon theory, which has been translated to several languages, and shared by people around the world.
She gave her friend the spoons and had her count them: there were 12.  Then told her that every task she does would cost her a spoon,.  In Christine's own words:  When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. 
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”.  We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I think the spoon theory is an excellent description of living with fatigue, and the way you have to think out every action, and decide whether it is important enough to spend your limited energy on.  In my next post, I will share with you a great description I found recently of living with pain.