MAKE A NOTE!! -- JUNE 1ST, 1998

CIRCULATION 56

No, you didn't miss an issue. With the schedule I have lined up for the summer I'm afraid everyone will have to deal with just a monthly issue. But I'll try to keep them informative.

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Y2K (Year 2000) PROBLEM

Steve & I both have been getting a lot of people asking us about this subject. When we go to the year 2000 then a lot of computer programming isn't designed to recognize it as 2000, but will instead think it is 1900 (all computers originally assumed all years began with 19 in their programming). Depending on who you listen to, it will either lead to a complete economic collapse or no big deal. We are more inclined to think it will be somewhere in between. As it gets closer to the time, I will try to send out some suggestions to prepare for possible problems. Right now, the only thing I would recommend is to contact the people you do business with (e.g. utilities, banks, insurance companies, credit unions, etc) on a regular basis and ask them what they are doing to prepare for the year 2000. Most should be working on the problem, but if not, the voices of concerned consumers is always a good way to at least get them thinking about it. POST IT...with your bills.

MEDICAL RESEARCH ON YOUR OWN

When you or someone in your family is diagnosed with something you know little about, the fears can be overwhelming. But the internet can make the fact finding so much easier than it used to be. In fact, until I was diagnosed with a rare (1% of the population has it) autoimmune disorder, I had NEVER been on the internet. But I decided that was the perfect time to learn and Steve was glad to teach me the basics. So here are some basics for you to consider.

#1. CONTACT NATIONAL ASSOCIATIONS OR SUPPORT GROUPS-that deal with the ailment (e.g. American Lung Association, National Multiple Sclerosis Society). In some cases you may be able to get a lot of good information from a broader group, like the American Autoimmune and Related Diseases Association (handles info about lupus, scleroderma, rheumatoid arthritis, etc) or the National Organization for Rare Disorders (even if your condition isn't rare, it still might be on there and their packets are very informative). Most associations publish regular newsletters, so ask for samples and subscribe to the ones you think will be helpful. Often these associations can refer you to specialists, and local support groups. While I have never felt the need for medical support groups, it might be helpful to attend a meeting to find out which doctors in the area are on the ball. To find national associations check "The Encyclopedia of Associations" at the library or call the American Self-Help Clearing House at (973)625-7101. I have a book that lists some associations, so if you send me the ailment, I might be able to give you a contact. MOST associations work very hard to try to get info out and do the best for the patients, but a few may get off track (for those of you who saw the movie, "Lorenzo's Oil" on ALD or "First Do No Harm" on epilepsy and the families who felt they were misinformed about treatments that could help their children), so don't limit your info gathering to one source. Also check for support organizations that may have ties to companies that may have a special interest in a particular therapy that MAY or MAY NOT influence their recommendations (e.g. CHADD-Children and Adults with ADD is primarily funded by the drug company that produces Ritalin).

#2. MEDICAL LIBRARIES-Try to find a medical library in your area that is open to the public. Most medical librarians are very helpful. Most medical libraries open to the public are at medical schools or teaching hospitals. You can also call the Regional Medical Libraries System at 800-338-7657 to find the one nearest you.

#3. MEDLINE-is the National Library of Medicine's database that is now available FREE online. Check their index. In most cases, you don't need to go back more than 5 years to get a full overview. Info older than that is probably outdated.

#4. INTERNET SEARCHES- When you cruise the net the amount of info can be overwhelming. Be sure that you know who your source is. Try and utilize web sites that are association, or hospital based, but beware of web sites that have a commercial interest in what they are trying to "sell you". If you happen to stumble across something on a newsgroup or in a chat room, be sure to try to confirm it with other medical research, or association input. Most associations now have a web presence.

#5. RESEARCH "R" US-There are also companies that will do all of the above for you for a fee. The fee can range anywhere from $85-over $300 depending on the company and what you want from them. If you need help in finding these organizations, email me for some contact numbers. But if you are internet savvy, then chances are you can do just as good a job as they can.

#6. THE DOCTORS' VISITS-Before you go to the doctor make a list of all the questions you have. Bring copies of pertinent information you would like him to examine. Consider taking a "patient advocate" with you. Usually this is a member of your family that can help remind you of questions, symptoms, and just provide a little more input. Some hospitals actually have free advocates who can be there for you, but they do have that hospital connection. There are some people who can be hired to act as an advocate (usually they will also research the condition for you as part of their service) for you, but many hospitals and doctors refuse to allow them in visits with you, but might let "A FRIEND" in with you. Often male advocates seem to solicit a more positive response, esp. in the military medical system. Most good doctors will want you to be an active participant, a partner, if you will, in your care. I cannot stress enough that if you have a doctor that seems to feel negatively (threatened, angry, upset, condescending, mocking) towards you for asking questions, wanting a second opinion, or being informed, or abruptly dismisses your concerns as being unimportant or silly, you might want to consider switching doctors. THIS IS ASSUMING THAT YOU ARE DISCUSSING THINGS WITH THE DOCTOR IN A CALM & RESPECTFUL MANNER. Let me give you an example of how it SHOULD go. I was very blessed when I was diagnosed to have fantastic docs all the way around. At first they thought I had lupus and sent me to an endocrinologist, I had done my homework & when the doctor suggested we wait & see if I developed any more symptoms, I asked if he could order some tests. When he asked "What tests?" I had my brochure from the Lupus Association that outlined 6 tests to help diagnose the condition. He didn't try to act like he KNEW EVERYTHING (only God has that cornered) and didn't get defensive. He agreed to order 4 of the tests & if they were positive to order the rest. Later when they found out I had APLA, I did my homework for that and went in with copies of article to discuss issues with my family practice doc. While he was familiar with APLA (he had done some training with a rheumatologist), he asked if I could leave the articles for him to read, which I did. He also ordered a repeat test to make sure the first wasn't a mix-up (always a good idea with any serious condition). This doc was the best we ever had, but PCSed up to Ft. Drum, so any of you up that way, get Dr. Costley, and you will be spoiled rotten. Then I got an appt with a rheumatologist to make sure all was being handled correctly. By that time I had corresponded by email with people researching this condition in different parts of the country and felt very comfortable in my knowledge of what I was up against. The rheumatologist remarked at how easy the visit was for her because she didn't have to explain the basics and we were able to get right to the details of possible treatments, and recommendations. She was PLEASED to have an informed patient, as I think any good doctor would be. 

NOTE ABOUT ALTERNATIVE THERAPIES-Many medical doctors are starting to incorporate so called alternative therapies (herbs, acupuncture, diet changes, natural remedies, etc) into their traditional medical practice, but you need to be very careful about these things because there can be big differences of opinion in their effectiveness. You also need to be careful about web sites and what they say. If you are interested in Alternative Therapies, a good web site to start with is run by Dr. Weil at http://www.pathfinder.com/drweil/. He has an excellent reputation in the field of encouraging doctors to use more alternative therapies in conjunction with traditional treatments. Most major teaching hospitals are now using some form of alternative therapies IN CONJUNCTION with traditional therapies.

P. S. You also might want to check out the two movies mentioned above. They are excellent examples of families who did their homework and fought hard to get their kids the best treatment possible. And they might give you even more ideas on how to check things out. POST IT...in your medical guide book.

JOKE (COURTESY OF CASINELLIS-Condensed version)

Adam was walking in the garden and was telling God how lonely he was. God told him that he had just the companion for him. This Woman would cook his meals, do his laundry, agree with every decision he ever made, bear children for him and never ask for help with midnight feedings, never nag, would always be the first to admit she made a mistake, never have headaches, always give love and compassion whenever he needed it. Adam said, "That sounds great! How much will it cost me?" "An arm and a leg.", says God. Adam said, "Well, what can I get for a rib?" :-)

ALONG THE SAME LINES....(FIRST HEARD FROM PASTOR CHUCK SMITH)

Man was talking to God in the garden and was saying how much he really liked the woman God had provided for him. He asked God, "God, why did you make woman so beautiful?". "So, you would love her", said God. "But God, why did you make her so desirable?", said Man. "So you would love her," said God. Then Man said, "But God why did you make her so STUPID?" "So SHE would love YOU!", said God. :-)

QUOTE

"Life is a splendid gift. There is nothing small in it. For the greatest grow by God's law from the smallest. But to live your life, you must discipline it. You must not fritter it away. Make your thoughts, your words, your actions work toward the same end - not self, but God and others."

---Florence Nightingale, Angel of the Battlefield

God Bless,

Sharon ^i^

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