My Survivorship A to Z Guide

You cannot be discriminated against because of your health history if you attempt to purchase or rent an apartment or house.

Lenders are not permitted to ask about your health condition, or to take it into account when considering a loan application.

If you rent your residence, you may even be entitled to ask the landlord to make reasonable modifications to the apartment, or even the entrance, to accommodate your condition. 

Before you travel, some of the most important things to consider are:

• Get a health check-up.
• Make sure the destination is safe for you given your current state of health.
• Check your health insurance well before you go to find out what treatment and emergency travel is and is not covered. If there are gaps, purchase a travel insurance policy. See Travel Insurance Post Diagnosis
• Take enough of the drugs you take for the entire trip, plus a few extra days in case you get delayed.
• Keep your drugs and a copy of the prescriptions with you instead of in your luggage.
• Takea copy of whatever Advance Directives you have, such as a Living Will, Health Care Proxy and/or DNR.

• Pack a photocopy of your passport in your suitcase.

It's possible to hire skilled nurses to travel with you to administer medications, monitor care and generally help you get around. There are even organized tours for frail or disabled travelers with nursing care available. Another option is to hire skilled nurses in each place you visit instead of traveling with them.

If you didn't read about your "new normal" see The Basics.

• If you plan to rent a car, you may not need rental insurance because it may be covered under your automobile policy, or on your credit card. Check before you travel.

Take proper precautions at your destination. For example, always be aware of whether the drinking water is safe -- even if you only travel in the United States. If water in a locale is to be avoided, then follow safety guidelines.  

With respect to public transportation services:

• Hours and days of service, service area, response time and fares differ by location.
• For information about transportation in your area, contact the Department of Transportation:  tel: 866.377.8642 (In Washington, D.C.: 202.366.4000) orwww.dot.gov/contact.html  or your state or local department of transportation. 
•  Volunteer drivers may also be available. Contact the American Cancer Society at 800. ACS.2345 and/or your local HIV organization.

With respect to public transportation services:

• Hours and days of service, service area, response time and fares differ by location.
• For information about transportation in your area, contact the Department of Transportation:  tel: 866.377.8642 (In Washington, D.C.: 202.366.4000) or www.dot.gov/contact.html  or your state or local department of transportation. 
•  Volunteer drivers may also be available. Contact the American Cancer Society at 800. ACS.2345 and/or your local HIV organization.

According to federal law (the Americans With Disabilities Act), you cannot be discriminated against due to your health condition by any of the following:

• Health care providers
• Hospitals
• Places of lodging/housing (such as hotels and motels)
• Restaurants
• Stores
• Other places where the public gathers

Reasonable accommodations must even be made for your needs. 

A lot of people with HIV think of their diagnosis as a death sentence. The thought occurs: "Why not lie on forms or to agencies to get what I want? I won't be here for the consequences."

Lying is not a good idea.

• Any prognosis other than a short term one is uncertain. People even survive the worst odds.
• In the information age in which we live, it's all too easy for a lie to come back and haunt you -- particularly at a time when you can least afford it. For instance, if you lie on an application for a disability income policy, you may get the policy. You can pay premiums year after year, and begin to plan as if there will be an income if you become disabled. The surprise hurts when the insurance company does some research when a claim is filed, and refuses to pay.

NOTE: Keep in mind that stating facts in a positive manner is not lying if the statement is accurate..

• Find out what is safe, what is unsafe, and what is considered risky sexual behavior.
• Learn about male and female condoms:
  • What they are
  • How to use them
  • What to do if one breaks
• If HIV is interfering with your sexual relations with your spouse: Tell your spouse about your feelings and what you would like to change. Ask for your spouse's point of view. Listen to it rather than prepare your response. See if you can negotiate a change. If the two of you can't work it out, seek counseling.  

Weight: If you gain or lose weight, there are simple clothing tips that are not expensive. For information, click here.

Hair Loss: If you may experience hair loss, consider getting a wig before you lose your hair. For information about wigs, click here. Keep in mind that hair is like a perennial plant -- it usually comes back.

Make Up: For make up tips, click here.

As you will see in the articles in "To Learn More":

• There are steps you can take to avoid unnecessary infections from your pet.
• If you want to travel with a pet, it is now easier than ever.
• There are techniques for saving money as you live with a pet. One of the financial quesitons pet owners face is whether to get pet insurance to protect against potentially catastrophic costs. 
• Someone should be appointed to take care of your pet in case you become incapacitated or die. You can provide for a pet in your WIll, though not by leaving money directly to the pet.

Volunteering, both one-on-one and as a member of a group, has a lot of benefits. For instance:

• It helps you feel good about yourself and in general. The amount or form of the giving isn't as important as the act. Deeds can be as simple as helping someone across the street, or complementing the work of an aide in the hospital.
• As mentioned in our Employment category, volunteering for an organization can help you learn new skills or hone existing skills to better your position in the job market.
• If you volunteer with a local or national group involved with your condition, you'll learn tips about the practical aspects of living with your health condition. You'll also be in a preferred place if you ever need the services of the organization with which you volunteer -- or need access to other organizations that they can call for you.
• You can't go wrong if you volunteer for an organization that fits your passion.

Many people refer to their diagnosis as a "gift." It's as if they were sleep-walking until a diagnosis woke them up to the joy and wonder of each moment of being on the planet.

Looking at the glass as half full, or looking for the silver lining doesn't change the reality of your life -- but it does make it easier.

• Focus on the new view that you've gotten since your diagnosis. Perhaps there's a new meaning that wasn't there before. Or a new path.
• Let go of the things that don't matter any more.
• Focus your strength on what you need to do to win your battle.

The amount you give isn't important.

You can maximize the amount you give several ways. One is to check with your employer to find out if there is a matching grant program. NOTE: If you haven't disclosed your HIV status, think about whether asking for a matching donation to an HIV charity could signal that you are HIV positive. Since lots of people who are HIV negative give to HIV charities, it shouldn't raise a signal, but everyone's circumstances are different. If you haven't disclosed your status to your employer, read our article about whether to disclose your status.

If you're looking for a credit card that gives money to HIV causes when you shop: The Elton John AIDS Foundation WorldPoints Platinum Plus Visa Credit card provides money to AIDS charities throughout the country. Apply at www.BankOfAmerica.com/Credit/Cards

The following HIV charities are a few of those which have stores:

• Broadway Cares/Equity Fights AIDS: provides money to HIV organizations throughout the country. http://www.BroadwayCares.stores.Yahoo.net  (In the interest of full disclosure, our founder is also a founder of Broadway Cares/Equity Fights AIDS).
• Until There's A Cure: provides money for AIDS research and to organizations throughout the country: www.Until.org  (In the interest of more disclosure, our founder is a member of the board of Until There's A Cure).
• Gods Love We Deliver: provides hot meals to people in New York City who are homebound because of HIV: www.GodsLoveWeDeliver.org  
• Project Angel Food: provides hot meals to people in the Los Angeles area who are homebound because of HIV: http://www.AngelFood.org

If you have additional web sites to suggest, please let us know.

Looking at the glass as half full, or looking for the silver lining, doesn't change the reality of your life -- but it does make it easier. For instance, consider the following which have been helpful to other people and may be helpful to you:

• Focus on the new view that you've gotten since your diagnosis. Perhaps there's a new meaning that wasn't there before. Or a new path.
• The chinese symbol for "crisis" is "opportunity".
• Focus on the people you care about, and that care about you. Let them know you care about them -- not just once a year on their birthday, but often. It may not be your style, but maybe it's time for a new style. It frees them to respond in kind -- and doesn't that feel good?
• If there are old friends that you've had a falling out with and are waiting for the right time to patch things up -- now's the time.
• Let go of the things that don't matter any more.
• Some people refer to their diagnosis as a "gift." They say that it is as if they were sleep-walking until a diagnosis woke them up to the joy and wonder of each moment of being on the planet.
• Focus your strength on what you need to do to win. For example, learn what are the best foods for you.

Now that you know how to prepare for the "what ifs..." -- hope for the best.

To learn more about hoping for the best, as well as preparing for the "what ifs," see The Basics.

Spirituality, a belief in a higher power, can provide a major source of support and comfort.

If you haven't found spirituality, stay open. Things tend to take on a different perspective after a diagnosis. Listen to your inner voice.

If you have found spirituality -- encourage it. In a spiritual world, you are not alone.

There are countless paths to spirituality. The right path is the one that works for you -- whether it's through religion, new age thinking or your individual belief.

Don't be surprised if your spirituality changes or deepens. Diagnosed eyes see differently. 

For information about spirituality, including tips for finding it, and tips for keeping it, click here. 

In most states, it is easy to apply for and receive a Handicapped permit. In most areas, you do not need to be a driver or the registered owner of a vehicle to get a permit.

Contact your state's Department of Motor Vehicles to determine:

• Eligibility requirements
• What you need to verify eligibility (such as a letter from your doctor)
• How often you have to prove eligibility or otherwise renew the permit
• The cost of the permit.

You can find contact information for your state's Department of Motor Vehicles at www.dmv.org

NOTE: Based on the experience of other people, if you do not appear to be physically handicapped, consider preparing an answer in case you are asked why you park in a handicapped parking space.