Downsizing to One Car

We moved into our apartment 1 ½ years ago. Our living space is now attached to my husband's psychology office and my art gallery. My husband no longer has to drive to work, and I only do if I am working at the hospital. He likes to joke that now a traffic jam means tripping over the cat. We have been talking for two years about the possibility of getting rid of one of our cars. We are finally doing it- this week. This will be big step for us. We have each had our own cars for decades. Over the past year and a half, we have gone months where we never needed to go two separate places at the same time. The past two weeks it has happened twice, but both times we were able to figure out how we could have done it with one car. We have continued being a two person, two car family because of lack of incentive to do otherwise.

We got a phone call from our oldest son last week: the 1996 Honda Accord that had been my husband's previous car, was quite ill. It turns out that it would cost about twice as much as the Blue Book value of the car in order to fix it. Here is our incentive. He and his girlfriend are coming to town the end of this week for a friend's wedding. They will drive back to Boston in my 2000 Honda Odyssey.

At first Ben was not thrilled about driving an 'uncool' minivan. Then my husband pointed out how many bikes he can carry, inside and on bike racks on the back and roof, and he changed his mind. He is frequently going to cycling races.  Bike-carrying capacity is important. 

So this week, I need to clean out my car and say goodbye to my own ride. I have driven my husband's car before, but now it will become my car, as well as his. I like to listen to books on CD's, he listens to the radio. I like the seat closer, and the temperature warmer. I will need to find new places to stash my hospital ID and my Pilates bag. In a few months it will seem natural that we share a car, but not yet.

Getting rid of one car will decrease our expenses and open up space in our garage. I will have room to spread out my woodworking equipment so I can actually use it without having to rearrange the garage each time. My husband will have an easier time getting out the lawn mower.  He will no longer get annoyed with me when I don't check the tire pressures. (Crawling around on cold cement is not my body's favorite pastime.)

So what is my lesson here?  Simplify your life. Get rid of extra stuff. You will have less stuff to clean and take care of, and easier access to the stuff you need.  If you don't want it, someone else might.  This is a good thing. At least it will be once I get used to it.

Making Decisions

My Chronic Illness/Chronic Pain Support Group yesterday discussed Making Decisions. We all have difficulty making decisions sometimes, and I know that some people have great difficulty making even basic decisions.  I discovered. in my research that there is an actual name for this great difficulty: decidophobia (very creative).  It may come from decisions in the past that lead to a bad outcome, or from being ridiculed or chastised about decisions or outcomes. May also develop from low self esteem, insecurity and lack of self confidence. Symptoms include panic, feeling of impending doom, procrastination or mental paralysis regarding decisions.  Some treatments include: give yourself time, gather information needed, avoid pressure from others, be realistic about your fear, and about the decision you need to make, put things into perspective, learn to accept some discomfort of not knowing or not being certain, stop obsessive thoughts.
I listed some facts to recognize regarding making decisions. These are:

You may need to make a decision without all the info you think you need.

You may get info later that would have affected your decision. That's life, not a flaw in you or your decision making process.

Few options/decisions are perfect.

Strong emotions like fear, anger and jealousy can distort thinking and affect decisions.

Trust your gut. Decisions based on instinct are often right, decisions based on emotion seldom are.

We also discussed how having a chronic illness or chronic pain affects making decisions:

1. Medication or the illness itself can cause “brain fog”, making clear thinking difficult.
2. Fatigue or other symptoms can make following through with a decision difficult.
3. If not able to work and/or living on disability, finances might be tight, decreasing options. 
4. Chronic conditions can affect self esteem and self confidence.
5. Being dependent on others in some areas of life can affect how they treat us in other areas. They may think we can't make our own decisions, and may try to make them for us.
6. Living with a chronic condition requires many life altering decisions that most people don't need to face.
   
   I think the 'take home message' here is that it is important for us to give a decision the amount of attention it deserves. What to wear should be a much quicker decision than whether or not to have surgery. Learn to make unimportant decisions quickly, saving your energy and effort for the more important ones. If you have a time of day when you are most alert and focused, do your important decision making then. If you don't trust your own judgment, share your thoughts with someone whose judgment you do trust, and ask for feedback. Ask for help in gathering information and advise, but make your own decisions.

Refreshing Herb Water to Drink

I have written about my garden off and on.  I want to share here one of the simplest ways I use my garden every day during the warmer months.  I love the smell and taste of fresh herbs.  Many of them are easy to grow.  I have a huge 'bush' of lemon mint that I started last year.  I also have lemon thyme also from last year, and lemon verbena, which did not survive the winter so this one was planted about 5 weeks ago.   You may notice a theme in the plants that I picked.  I also have cinnamon basil and lavender, newly planted this year. 
Every morning I go out to my garden and pick 2 bunches of mint and 3 sprigs of thyme.  Later in the season, I will vary which herbs I use, but right now I am giving the newer plants time to grow before I start using them.  I take my fresh picked herbs into the kitchen, and crush them a little to release their essence, then put them in a 64 oz. container of fresh water.  I add 2 teaspoons of xylitol, which is a natural sugar which is actually good for you.
I put the lid on the container and shake it.  I let it sit awhile to let the xylitol melt and the herbs to infuse into the water.  I leave the bottle on the counter, because I don't like cold (refrigerated) water.  After about 15 minutes, it is ready to drink.  I fill up my water bottle, trying not to let too many pieces of herb into the bottle (if some gets in, that is okay, I will munch on the bits of herb when they enter my mouth while drinking).  The herbs give the water a light herby taste, varying with the chosen herbs.  It is very refreshing, and encourages me to drink more water throughout the day.  When my water bottle is getting empty, I fill it up again with herb water from the 64 oz container.  At the end of the day, I throw the herbs into the sink disposal and grind them up to make my kitchen smell good.  The next morning, I make a fresh batch of herb water.
I have never been much of a pop drinker, and I never acquired the coffee habit that so much of the civilized world has. I mostly drink herbal tea or water, so this herb water is just my 'cup of tea'. It is very healthy to drink.  It likely has some vitamin/mineral/etc. content, though I can't tell you what or how much.  I can tell you that there is nothing in it that is unhealthy.  The xylitol adds the only calories, and very few, at that (10 per teaspoon, I believe, so a total of 20 in the whole bottle). Some people do have gastrointestinal issues with large quantities of xylitol, but this is not a large quantity.  No caffeine, no alcohol, no artificial sugars or additives.  Mint is very easy to grow, in fact, if you are not careful, it likes to take over garden areas.  You can use it alone, or with other herbs.  If you don't want to or can't grow your own herbs for some reason, you can still enjoy this herb water by buying herbs at your local store or farmer's market.  Happy sipping!    

Communicating With Loved (and Liked) Ones, part 2

This is a continuation of my previous blog on communicating with family and friends when you have chronic pain or illness.  Towards the end of this post I have included some basics about good communication and assertiveness in general.  I end with some basic facts of life.

1. Even when you and your partner seem to be on the same wavelength, don’t expect them to be psychic. Be clear about what you like or dislike, need, etc.
2. Build your support system so you have different people to help with different needs.
3. Participate in family activities as you can, but don't hold others back from what they want to do.
4. Family members need to know that they are more to you than just a paycheck, a bill payer, a dispenser of medical care etc. They are also people with wants, feelings, and limitations of their own. Thank them out loud and/or in writing from time to time.
5. If you are having a good day and are capable of doing more than usual, let your partner know. Also let them know when you are capable of doing less than usual. Do as much as your health permits to maintain independence.
6. If you don't feel well and end up yelling at your partner when they haven’t done anything wrong, apologize. Don't just hope it goes away. Let your partner know you are mad at your illness and not them.
7. Sometimes we may suffer guilt and fear of being too much of a burden, and we withdraw, leaving our partner to wonder if it was something they did. Talk about your fears and feelings of guilt. Encourage them to be open as well.
8. Some people may be so uncomfortable with your illness or pain that they are in denial. They don't want to talk about it or hear about it because it is too distressing. They may feel overwhelmed and cut off communication.
9. Or they may be very worried about you and not know how to express it other than nagging you or being overprotective.
10. Try to understand their perspective, and work with them from there.
11. If you disagree, be respectful and assertive. Tell the other person what the problem is, and how you suggest fixing it.
12. Use "I" messages when appropriate: "I feel angry when I try to tell you about my pain and you mock me. I would appreciate if you would try to understand how I feel.”
13. Try to keep your expectations of one another reasonable, and be willing to cut each other some slack on the things that aren’t deal breakers.

The key to most communication is assertiveness. The best definition of assertive is DIRECT WITH

RESPECT.

Good communication involves:

Making eye contact.

Giving others the chance to have their say without interruption.

Listening - Focus on what the other person is saying, not on what you want to say next.

Asking questions when you don't understand or need more information.

Repeating back to the person what you understood, to make sure you did understand correctly.

Recognizing and communicating how you feel, as well as what you think and want and need.

Accepting that others have a right to their opinion as much as you do to yours.

Remember- Each of us is the center of our own universe. You can't change someone else; you can change how you interact with them. Each of us is responsible for the consequences of our actions.

The Princess and the Pea had Fibromyalgia

'The Princess and the Pea' is a fairy tale first published in Danish by Hans Christian Andersen in 1835.

A young prince comes of age, and wants to find a suitable wife. She must be of royal blood, and therefore of great sensitivity. One stormy night a girl seeks shelter in their castle, stating she is a princess. The prince's mother, the queen, sets up a scheme to test if the girl is of appropriate delicacy and sensitivity. She stacks up a pile of twenty mattresses and twenty feather-beds, and underneath, places a single pea. The girl must spend a night on this stack of mattresses. Most young ladies would sleep soundly, never knowing that there was a pea underneath the bottom mattress, put there to test their suitability for marriage to the young prince. Only someone of extreme sensitivity, like a princess, would be aware of it. The princess shows up at breakfast the next morning groggy and in pain from her ordeal trying to sleep on such an uncomfortable bed. (Sounds a lot like how I show up at breakfast every day.)

I believe this to be the first, and possibly the most accurate test for Fibromyalgia. Think about it. Fibromyalgia is defined by our over-sensitivity to tactile stimuli. Who but a person with Fibromyalgia would be able to detect such a slight alteration? And who but a person with Fibromyalgia would have their sleep so easily disrupted? This princess exhibits all the classic Fibromyalgia symptoms: overly sensitive skin, poor sleep, pain throughout her body, and even Fibrofog.

The prince is delighted that he at last has found a suitable bride. (Apparently, personality was not of any consequence.) The story ends with the young couple getting married, and the pea was put on display at the royal Museum. Being married to a prince could be a good gig for someone with Fibromyalgia. There are servants to wait on her hand and foot, she does not need to do anything she does not want to do. Her time is free for her to rest, and to do her physical therapy exercises to help her recover from the night she spent on the pea-altered pile of mattresses.

How to Communicate With Your Doctor

This is part 2 of 2 in my 'How to Communicate With Your Doctor' series, started in my previous post, 'How Doctors Think'.  This is a list of ideas and strategies to get the most out of your relationship with and your visits to your doctors.

1. In the weeks leading up to the appointment, keep a list of symptoms, questions and issues you want to discuss. Be specific. Organize and prioritize your list before the appointment. Plan to discuss 2-5 issues, depending on the complexity and time available.
2. Keep a list of all medications, supplements, vitamins, etc. including dosages and frequency. Include past medications, why you stopped them, and allergies and adverse reactions to medications. Also list any medications you need refilled.
3. If it is a new doctor, bring a summary of your medical history, and have any relevant test results and info sent from your previous or referring doctor.
4. Be open with your doctor. He can't help you if you aren't honest. Help your doctor help you by giving all the information he needs to give you the best treatment. If you don't plan to follow his instructions, say so, there may be alternatives more to your liking (less expensive, less time consuming, more convenient, etc.)
5. If you are uncomfortable talking about an issue, write it down. Give it to the doctor to read. Remember that your doctor is trained about all body parts and how to treat them.
6. Give your doctor a copy of your list of questions, issues, etc., and keep a copy for yourself.
7. Look for a doctor whose 'bed side manner' is compatible with you. Some people like a doctor who takes charge, others prefer more of a team approach.
8. Ask questions if you don't understand. Speak up if you don't like what the doctor suggests. Ask for alternatives, and take time if you need to make a decision. Ask for a referral for a second opinion before agreeing to surgery or other intrusive or expensive procedures.
9. Repeat back what the doctor has told you to make sure you got it right. Write down instructions. If you have difficulty with thinking clearly, take someone with you who can help make sure you get what you need.
10. Make sure you fully understand your diagnosis and treatment before you leave, as well as what the next step is. If the doctor has left, ask the nurse.
11. Always get copies of test results for your own file, and to share with your other doctors.
12. Find out if your doctor offers email communication between visits.
13. When describing pain, tell: where, how intense (on a scale of 1-10), if it is constant, occasional, intermittent, etc., what it feels like (tingling, throbbing, stabbing, achy, etc.), what makes it better or worse, and how it affects your life.
14. If tests are suggested or ordered, ask what the test will show, method, preparation, what is involved, when to expect results, whether they will call with the results or if you need to call, and insurance coverage. When you get the results, ask for an easy to understand explanation.
15. For a new medication, ask the name, purpose, how, when and for how long to take it, possible side effects, which ones to be concerned about, and what to do if they occur. Is there anything to avoid while you’re on it, such as certain foods, drinks, or other medications or driving? When should it take effect and the cost. Have one doctor take charge of all your meds to minimize chance of interactions. If a medication is not working for you, or you can't tolerate the side effects, talk to your doctor. Don't stop it or change the dosage on your own.
16. If you want to try complementary or alternative treatments, talk to your doctor about it. Present articles and information, discuss pros and cons and possible interactions with current treatments. If you get a doctor's prescription, your insurance may cover it.
17. Educate yourself about your illness. Though your doctor is the expert, he should not be expected to know absolutely everything about every ailment. Keep up with the latest research on treatments, bring in literature to educate your doctor. Some doctors don't like this, find one who does. They are more likely to treat you as a partner rather than just a patient.
18. You have limited time with the doctor. Focus on medical related issues. Other questions, such as directions to a testing center, or the time of your next appointment, or where you should park your car, can be asked of others on the doctor's staff.

If anyone has other ideas to add to this list, please post a comment at the end of this blog post by clicking on the word 'comments'.