The First Member of Your Team Is You!

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The First Member of Your Team Is You!

http://www.webmd.com/content/article/4/1680_50464.htm

By Earl Brewer, M.D., Kathy Angel

WebMD Medical Reference from " The Arthritis Sourcebook "

OK, so you have arthritis. Just what are you going to do about it? You

didn't ask for it, you certainly don't want it, but it doesn't seem to want

to go away. Clearly, one way to take control is to get help from a doctor.

There are many wonderful health professionals out there who have spent their

lives helping people with arthritis. You need to get a diagnosis, learn

about what type of arthritis you have, and find out what the probable

outcome will be. That evaluation will be made by the physician you choose.

He or she may be a rheumatologist, an internist, or a family practitioner.

This person should have access to a variety of other health professionals to

help you work toward your goal of a normal life. You need to have

coordinated, comprehensive, continuous care. Obviously, it is extremely

important that all of these people be able to communicate with one another

as well as with you.

The idea of having a team of health professionals is a fairly recent

innovation in medicine. With chronic diseases it is virtually impossible for

one person to meet the tremendous variety of needs of each patient. I had a

dear friend in Houston, Helga, who had rheumatoid arthritis. When she was

first diagnosed I had been helping my fourteen-year-old daughter, ,

fight her battle with arthritis for several years. Helga had seen the amount

of physical therapy received morning and night, including the hot

paraffin bath in which I warmed my daughter's hands and feet to alleviate

her pain. Helga knew that tried to swim in a heated pool whenever

possible. She was aware that there were many things going on around our

house to keep active and involved in school.

By contrast, the only thing Helga's physician did was to prescribe

medication. Helga did not understand why she was so fatigued, why she was so

cold much of the time, why she had difficulty getting out of bed some

mornings. She would call me for information because she didn't want to

" bother " her doctor by asking him such " minor " questions. Now I would ask

you, is not being able to get out of bed a " minor " problem? This doctor

definitely needed at the very least a good nurse and a physical therapist to

help Helga understand just what was happening to her body and how to handle

the problems she was facing. That is the role of a health team: to educate,

to coordinate, to help you live a normal life. But remember, this is a

collaborative effort with you in the lead.

You are going to have to do a great deal of soul searching, which is not a

bad thing to do. Many people rush headlong through life with no real

objectives and find at the end of their lives that they have wasted much of

their talent. You will now be forced to really look at your life and decide

just what is important and what can be deleted. A diagnosis of arthritis is

not the end of your life. There are many things you can do to keep control

of your daily activities. It will take more self-discipline than you may be

used to. Where exercise might have once been an overlooked drudgery, it now

becomes an imperative aspect of life. Weight control is important in

managing certain pain and in generally diminishing stress to your joints, so

good nutrition will also become a newfound phrase. Relaxation techniques

take on a whole new meaning in helping to ease the pain of arthritis.

You As Team Leader

Your goal, despite having arthritis, is to live a normal, fulfilling life.

Each of us has our own concept of exactly what that goal might be. In order

to reach your goal, you will need to assemble a team to assist you in your

effort. Available resources will depend to a great extent on where you live.

In large cities, medical help will be more readily available. Many

rheumatologists in large medical centers work as part of a team of health

professionals. In smaller communities, health professionals such as physical

therapists, nutritionists, and psychologists, may not be an immediate part

of the physician's team, but your doctor or nurse will probably know of

people to whom they can refer you. The nurse in a rural area may perform

other duties, including counseling or teaching range-of-motion exercises.

Also, the size of smaller towns may allow easier accessibility to

professional help.

Again, the most important member of your team is you. Say we create a list

of all the possible ways of coping with arthritis: going to a physician,

taking medication, exercising, eating properly, resting, seeking help for

any emotional problems, finding someone to help you with an exercise

program, having surgical replacements, and so forth. When you look at the

list, you will realize that the only one who can implement these things, the

only one who can begin the process of healing, is you! You have to make that

first appointment. You have to do the exercises, take the medicine, listen

to your body, and act accordingly. The good news is that you are not alone.

There are a multitude of people out there to help you. But you have to ask

for help.

What Are Friends for Anyway?

The next important members of your team are your family and friends. The

very fact that they care about you means they will also be impacted by your

arthritis. Because arthritis is usually a long-term battle, you will need a

lot of support from those around you. Even the strongest people will have

bad days, days in which they will need a friendly shoulder to lean on. When

it seems impossible to get out of bed because your joints feel like hardened

cement, you will need a friend to gently give you a shove toward that hot

bath or shower. You will need them to help on those dark days, and to

celebrate on those days of victory!

, a woman approaching forty, tells me that when she was diagnosed with

rheumatoid arthritis at the age of eighteen, she totally denied that she had

a problem. She just muddled through the best way she could, with little

help. Today she has serious impairment, probably in part from the years of

neglect. She has a loving, caring family, and she admits that if she had

gathered support from them in those early years of the disease, she would

probably not be as impaired as she is today. We will never know. But if you

are newly diagnosed, don't repeat 's mistake. Don't look back in

twenty years and wish you had done things differently. The resources are

there. Use them for your benefit!

Let your family and friends know that you are afraid. Tell them that you

don't want to be dependent on others. Tell them your anxiety about the

possible side effects of the medications you must take. If you share your

deepest thoughts with those who care, they can help you work toward

solutions. Family members can help with the day-to-day necessary things --

physical therapy, medications, encouragement, and just being there.

It is really horrible to love someone and see them in pain. Parents who have

had to watch their children scream in pain with arthritis have said that

they wish they had the arthritis instead. I was one of them. Your family

members will understand your suffering as no one else will. And pain is

difficult for all of us to live with. It produces all sorts of negative

feelings and destructive fears.

Dealing with Fear

You must overcome your fears in order to be an effective team leader. A good

place to start is to first acknowledge their existence. We'll focus on some

of the more prevalent ones:

The fear of dying. Although some people die from complications of some of

the rheumatic diseases, the vast majority do not. This is one of those fears

you should relegate to Mark Twain's comment that " I have had many fears in

my life, and most of them did not happen. " If you are a parent of young

children, it is important that you let them know that you are not dying.

Sometimes in our own anxiety we forget just how frightened our children are

when we are ill. If we don't give them any information, they usually imagine

the very worst case. Discuss the disease with them in age-appropriate ways.

If they are old enough to understand, let them go with you to the doctor and

ask them to help with your exercises and to remind you to take your

medications.

The fear of being dependent on others. Not one of us wants to be dependent

on other people. This is one of those fears that should positively motivate

us to actively pursue physical therapy, good nutrition, and the other means

we are discussing to help you maintain your independence. But at various

times in our lives most of us will be dependent on others. If you find that

you have to depend on others for help, you will have to evaluate your

situation. By all means, try to keep an upbeat attitude. It's a tough

situation, but remember that most people are happy to lend a helping hand --

unless of course you are a real Scrooge! Keep a smile on your face. Be

grateful for their help, and let your supporters know frequently that you

are grateful.

The fear of medications. I presume that we all know that every medication

will have some side effect. To eliminate your fear regarding medicines, you

need to educate yourself regarding good benefits versus bad side effects.

Ask your physician to explain just exactly what you should expect from the

medications. Remember that it is your body. Ultimately, what risks are you

willing to take to control your arthritis? We each have a different

tolerance for pain, so only you can answer that question.

The fear of the unknown. When we are operating out of ignorance, we usually

imagine the very worst possible scenario. It is up to you to ask questions,

to educate yourself about the disease, and to move from the unknown to the

known.

Each of you can probably enlarge and expand this list, based on what is

happening in your life. Illness does create fears. Discuss them with friends

and family members. Force them out into the bright daylight. That alone will

help put them into perspective. Seek out other people with arthritis and see

if they have had the same fears. You may be surprised. And people who have

had arthritis for some time will be able to give you some creative tips on

overcoming those fears. Some fears are indeed realistic and need to be

addressed up front. But fear can cause paralysis in our behavior. In order

to achieve our life goals we must overcome our fears, realistic or

otherwise.

The pain, chronicity, and unpredictability of arthritis can also produce a

lot of anger, anger that we may not even understand. Unfortunately, when we

are angry, we usually lash out at those closest to us. Be careful! Don't

alienate those who care the most. Anger is a normal reaction to an unfair

situation. " Why should I be the one with arthritis? " you may ask. Be assured

that there is nothing fair about that fact! But don't let arthritis destroy

your most important relationships. Find creative ways to vent your anger

other than screaming, blaming others, or withdrawing. Exercise, get in the

shower and have a good cry, write about your anger, throw a pillow, turn the

radio up really loud, imagine having a terrific turkey dinner. If all this

doesn't work, get professional help. Anger is normal, but you need to keep

it under control in order to control your arthritis.

If I'm the Leader, Why Can't I Plan Simple Things?

Aside from the obvious fact of being in pain, there are many really

aggravating, irritating things about arthritis. At times it is an

" invisible " disease. You may look the same but you just can't get out of

bed. You may be getting ready for an appointment and you become extremely

fatigued. You may have planned a wonderful vacation and all of a sudden you

are in a " flare. " All your joints hurt and you can't possibly go.

Inability to plan even simple daily activities leads to major frustration.

You are disappointed, your friends and family are disappointed, or your

employer is disappointed. When this happens, and it probably will with

arthritis, you need to look at your life and try to observe if some symptoms

are created by certain activities. Perhaps your lifestyle produces a lot of

stress. The solutions may be as simple as resting beforehand, rearranging

medications, or having alternate plans. Letting people know ahead of time

that you may not be able to make it, and encouraging them to continue

without you, will alleviate some of the other people's frustration. In

severe cases, after you have exhausted all the possibilities of controlling

your arthritis, you may have to consider a career change -- and that need

not be the end of the world.

Acceptance as a Beginning

When my daughter was fifteen years old and had been battling severe

rheumatoid arthritis for about four years, she made a comment that I will

never forget. had begun taking gold injections, and many people

had told me that they were very painful. One woman said that she would

rather have the pain of the arthritis than take those injections. Yet each

time we went to Earl Brewer's office for an injection, my daughter never

even blinked an eye. On several occasions I asked if the shots were painful,

a question which never fully answered. Finally one day, while

waiting for the elevator, I asked her again.

looked at me with a fierce determination and said, " Don't you

know, Mom, that what is pain for other people is different for me? I have

accepted the fact that I have arthritis. I have to accept the pain that it

brings and incorporate it into my life or it will destroy me. I have more

important things to do with my life than worry about this pain. " Her

observations helped me to get past some of the pain I was having and get on

with my life, too. Profound words from a very young lady!

The sooner you accept the fact that you have arthritis, the sooner you will

be able to begin the process of getting on with your life. Certainly there

is a period of grieving, but don't let that grief dominate your life for

very long. It is the only life you have. Please make the very best of it!

" Copyright © 1998 by Earl J. Brewer, Jr., M.D. and Kathy Cochran Angel. From

The Arthritis Sourcebook, by arrangement with NTC Contemporary Publishing

Group. "