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Living with Kienbock's Disease is often difficult. You don't realize how much the wrist affects everything you do until everything you do hurts.
Suddenly, here you are shuttling to new doctors, learning knew things, trying to figure out how to do the things you used to be able to do, living on a limited budget if you've had to leave work, and having way too much free time.
 Your Paperwork
Doctors are going to need paperwork. If you didn't have pain in the wrist, you wouldn't be needing to see the doctor, but they still expect you to fill out a monstrous amount of paperwork. To make things easy on yourself, start organizing the information. Get a folder or binder to put things in. Go as slowly as you need, but don't put it off.
Collect your insurance documents, your insurance card, and any letters you've received from the insurance company regarding Kienbock's Disease. Make several photocopies.
On a single sheet of paper, list all of your doctors, with names and addresses. Include your primary care physician, dentist, orthopedist, rheumatologist, allergist, dermatologist, opthamologist, physical therapist, gynecologist, urologist, neurologist, psychiatrist, and any other doctor you've seen in the past 10 years or so. Include the name, phone number, and address of your preferred pharmacy. This is good information to have on hand, so make a copy to keep near the phone or in your address book.
Make a list of any diagnoses you have, allergies, and dietary restrictions. Write down everything, even if you don't see how it could be relevant. List any previous surgeries of any type. Make a few copies.
List every medication you take, its dose, its schedule, and the prescribing doctor. It's easiest to copy it directly from the prescriptions' labels. Also include every supplement you take, from vitamin C to St. John's Wort, and any over-the-counter medicines you take with any regularity, like tagamet, Tylenol, or Sudafed.
You don't have to write it down, but inform your doctor if you use medications that were not prescribed to you (a friend's Valium, for example), would have withdrawal symptoms if you were denied alcoholic beverages for 24 hours, or use any type of street drug, including marijuana, methamphetamines, or heroin. Your doc isn't interested in prosecuting you; he just needs to know these things as they do factor into your treatment and recovery.
Include copies of any legal papers like a living will or durable power of attorney. Notify your family of your beliefs concerning life-saving procedures, organ donation, and final wishes. Don't dwell on it or heavily weight it, just mention it.
When you've had as much paperwork you can take, smile sweetly and tell the receptionist or nurse that you just can't write anymore. Ask if you can place copies of the notes you've made into the records instead.
Your Doctor
Having a good relationship with your doctor is paramount.
You do not have to stay with the first doctor you see.
Looking for a doctor can be intimidating. Ask friends if they have any experience with orthopedists. Ask your own doctor. Don't be afraid to make cold calls from the phone book.
The office staff is usually a good barometer. If the staff is friendly and accomodating, chances are, the doctor is too.
Have a list of questions to ask when looking for the right doctor.
- How busy is he? A good doc will be busy, but a doc that's too busy to be able to work you in, answer your questions, see you in a timely manner, or spend time explaining things to you may not be your best choice.
- Who takes call for him after hours? If you've already seen one of his associates and didn't get along well with him, would you have to deal with him on occassion if you had an after-hours problem?
- Does he take your insurance? Even the best doc for you may not be a feasible choice if you can't afford to pay him.
- Who answers his questions? Sometimes the doc himself will return phone calls and answer questions. Sometimes his staff does. Either way, it doesn't matter, but it's good to know what to expect.
- See also: Questions for your doctor
If you have trouble remembering what the doctor says at your
appointments, ask if you can record your visit with a small tape
recorder, then you can review it at home when you are under less
stress. Not all doctors will allow this but some will.
Your Appearance
Primarily for women
Get your hair cut. You won't be able to brush and dry and style your
hair for a while. If you have someone to do that for you (a husband
or friend) it will be easier if it's a simple style. If you don't have
someone to do it, get it cut as short as you can stand so that it's
wash-and-wear. You can wait until after surgery to have this done if
you have someone to drive you.
Several suggestions have been made as to what to do with long hair. Among the best I've seen are to have it braided into small braids (think Bo Derek in 10), which can then be gathered into a ponytail and need to be taken down to wash only every week or two, or to have long hair cut and donated to http://www.locksoflove.org/.
Find a cheap manicurist nearby. You'll have
trouble fixing those little fingernail snags yourself, and a coat of
bright red on the nails is a great mood brightener.
Get a pedicure, too, just for fun. --srhd
Practice putting on pants and a bra with one hand. You may need to get some sweat pants or elastic-waisted shorts/skirts.
Bras are going to be a problem for those who wear them. There's not a way to get around it,
but you can consider buying one or two that are a
bit larger than you actually need. Say, a 36B instead of a 34B. The
wiggle room will help. Front-hook or -zip bras are reportedly easier to manage. Tank tops with built-in shelf bras do double duty as shirts. And for the blessedly small-breasted, go without a bra whenever you can.
You'll also appreciate extra roomy t-shirts and slip-on shoes, but loose sandals like flip flops might not be a good idea. You will be a bit groggy from the pain meds
and you want sturdy, nonslip shoes on your feet so you don't trip and fall.
If you must wear make-up, figure out what one item makes the most difference. For me, if I'm wearing lipstick, I can get away with an otherwise clean face. For a friend, it's eyeliner. Maybe you need only a dusting of blush or a light coat of tinted moisturizer. Pare it down as best you can.
Your Home
Primarily for women
Accept that your house will likely fall to crap. You can fix it
later. Don't sweat it. No one will look down on you for it.
Make a Chores list and assign jobs to anyone who walks in.
Ask a neighbor, or pay a local teenager, to mow your lawn and carry your trash to the curb for a few weeks, if you live alone.
Visit flylady.net and consider joining her email reminder list for keeping your house in order. The site has been mentioned in issues of both Woman's Day and Time magazines. This relaxed and simple program incorporates advice for those dealing with illness.
Take a few minutes to find out exactly who in your
area will deliver dinner to your home: pizza, chinese, KFC, a local deli. Collect the menus for them.
Use freezer bowls instead of canning jars. You will not be able to open a jar or use a standard can opener.
Put away any good or sentimental dishes (and favorite coffee cups) so
that you aren't tempted to use them. If you should drop and break
one, you'd feel bad about it.
Stock up on paper plates, plastic flatware, and "disposable" bowls (made by Glad and Ziploc, available in the paper products section of the grocery store).
Your Mind
Subscribe to your favorite magazines. If you
look in the fine print of the masthead, there will be a phone number for
subscriptions. You'll get your issues sooner by calling than if you
mail in the subscription card.
Grab those old novels you've been meaning to read (or reread) since
college. Wuthering Heights, Jane Eyre, Brave New World, War and
Peace, The Sun Also Rises, The Great Gatsby, Catcher in the Rye, and
Lord of the Flies are all good. There are collections of short
stories like Sherlock Holmes mysteries, O. Henry, or E. A. Poe. And
don't feel guilty about the time you spend reading instead of doing.
You're broadening and exercising your mind.
Your Comfort
Collect a few pillows of various kinds: bed pillows, throw pillows, firm, soft, big, little. Have them near your comfy spot to prop up on. You may need a different combination every few minutes. If you do, don't become agitated at having to rearrange them. I mean, what else do you have on your schedule?
Buy a pack of baby wipes. They're much more efficient at personal cleaning than toilet paper.
An electric toothbrush may be more effective if you have to brush with your non-dominate hand.
Have a terry cloth robe on hand to use rather than a towel after a shower or bath. You can slip it on and let the robe absorb the water. Makes drying
your back much easier.
Use pump top bottles for shampoo, conditioner, body wash etc.
Your Responsibilities
Familiarize yourself with the post-op suggestions.
Configure your mouse to work with your non-affected hand and practice using it.
Do your dead-level best to stop smoking. This is a difficult and stressful time, and there will be boredom to contend with, but every cigarette you don't smoke increases your chance for recovery and positive outcome. If it is impossible to quit entirely, begin to limit the number of cigarettes you smoke in a given day until you're down to less than half a pack. You can talk to your doctor about Chantix or Zyban (drugs that significantly decrease the nicotine cravings), or try using the nicotine patches and gums.
See also: http://eatonhand.com/hw/hw107.htm.
Significant contributions by Stacy Goodman and Lydia Kedzierski.
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