Tips, Help And Resources On Lupus From Someone Who Has It

I was diagnosed with Lupus 14 years ago, but I have been living with it a lot longer.  It started in my teens with one or two seemingly unrelated symptoms that would last anywhere from one day to several months.  These would then go away for long periods of time.  Then 14 years ago while in my 30s, the Lupus blossomed into the full-blown disease.

For anyone living with the disease, you know the symptoms vary from person to person.  My symptoms vary at different times, but generally I have fatigue, joint pain without swelling, muscle aches, mild sun sensitivity and a butterfly rash.  Over the last 4 to 5 years I have developed Peripheral Neuropathy and nerve damage in my legs.  In the last 2 years I have also developed some brain involvement.  Other symptoms I suffer from at times include secondary Raynaud's Phenomenon, secondary Sjogren's Syndrome, various types of unexplained rashes, weight gain, thinning hair, joint pain with swelling, etc., etc.  :)

I just think its important to know who I am and what I have dealt with before I offer my thoughts, tips, helps or resource suggestions on Lupus.

Tips To Make Daily Life Better

First, its not easy, but the best thing I've learned is to not may Lupus who I am and to not make Lupus my constant focus.  Take some steps to protect yourself and to keep yourself and healthy as possible and make these a part of your daily routine.  Do it often enough and before you know it, these steps will be as much a part of your day as brushing your teeth.  No more focusing on Lupus and much less Lupus becoming who you are.

DAILY STEPS

     Wear sunscreen everyday no matter where you live, what time of year, the degree of sun sensitivity or lack of it and on cloudy days too.  Include lip balm with UV protection.  There are many brands of lip balm and sunscreen and some sunscreens are made specifically for the face.  Women remember, many make-up foundations and lipsticks/lip glosses have UV protection, so that you don't need to apply anything extra.

     Wear a hat if you will be outside for more than a few minutes.  If you have mild to severe sun sensitivity you should wear a hat at ALL Times.  Remember you need protection even on cloudy days!!  The hat should be more than a baseball cap and also not an open weave straw hat.

 A hat should shade the neck, ears and face.  The hat my model is wearing on the right is crushable felt and travels well.

The best hats are the ones with built-in UV protection such as the one modeled here.  This one has the benefit of being changeable in shape, and as you can see in the last picture, it folds for packing.

     Wear sunglasses with UVA/UVB protection.  Buy several pair and enjoy!

Here my model shows us the dark movie star glasses at the top, the full wrap around on the bottom left, and the fun fashion statement on the bottom right.

     Wear protective clothing.  For those with mild to severe sun sensitivity, consider wearing clothing with built-in UV protection on a daily basis.  See more about clothing below.

     Don't over plan your day!!  You only have so much energy.  If you try to do too much in one day your Lupus will take over.  It is better to do less and stay healthy than to push yourself too far, get sick, crash (or go into a flare as it is called), that knocks you down for days, weeks or even months.

     Plan rest periods into every day, even on good days, even if you work.  For some people 5 minutes is enough, for others a longer rest is needed, so plan on what's best for you.

     Take all of your medication everyday, AS PRESCRIBED by your doctor.  Do NOT alter it, cut it in half, skip days, or suddenly stop taking it.  Here I'd like to offer some advice based on experience.  Do NOT take any over-the-counter vitamins, supplements, herbal and natural remedies, cold medicines, etc. without consulting your doctor.  Even the ones that are herbal and natural can interfere with or interact with your prescription medications causing them to stop working or work incorrectly.  This could cause you to become very ill.

     Drink plenty of water.  Staying hydrated is important to everyone, but especially to those taking prescription medications.

     Eat healthy.  Don't diet unless told to by your doctor.  We all know the routine for a healthy diet, well-rounded meals, lots of fruit and vegetables and limit the sweets.

     Exercise.  You can't?  I know the feeling!!  However, you can move no matter what condition Lupus has you in.  Your down in bed?  You can wiggle your toes, stretch those stiff fingers and bend and unbend those knees a few times, just MOVE.  Schedule exercise into your day or at least 3 times into your week.

HELPS AND THOUGHTS FOR WHAT ELSE YOU CAN DO

     Have good doctors that you can trust.  What does that really mean?  First make sure that the doctors treating you are respected and good in their specialty, be it Lupus or a related field.  Second, all of your doctors should be willing to communicate with each other about tests, reports, medications and general information.  You should not have to be the go between.  Third, You need to feel like more than a face in a crowd with your doctor.  You need a doctor who listens, doesn't rush you out of the office, and takes time to know you, the person.

     Surround yourself with people you know understand your health restrictions.  These should be people who really care about you.  You don't want to be stressed by so called friends you are constantly trying to keep up with, explain yourself to, or are otherwise making your feel somehow inferior due to your Lupus.  Face it, you don't need that kind of stress and there are some people just don't get it.

     Mourn your losses.  Its ok to feel bad about what you have lossed due to the Lupus.  Its not ok to stay in that mode.  If you can no longer do something do to the Lupus, mourn the loss, then if you can do it in a limited way, enjoy that ability.  If you lose an ability completely, mourn the loss, then move on and find something to replace it.  Do I make it sound easy?  It hasn't been for me!!!  Over the years I've had several losses due to my Lupus and none of them have been easy.  Remember those people who really care about you?  They'll help you get through the losses.

     Respect your limitations.  Don't try to do more than you should.  If you have restrictions due to pain, stiffness, fatigue or from your doctor, don't do more than is reasonable.  Well meaning friends and family may try to push you beyond your limitations thinking your "giving in" to your Lupus.  Don't let them talk you into it.  And don't talk yourself into it.

     Help someone else.  Its true that helping others makes us feel good.  I highly recommend it.  Volunteer for a charity or just help out a neighbor, you might be surprised how good it makes you feel.

     Learn to say NO and mean it.  Does that sound terrible?  Its not you know.  Those of us with Lupus know that people often expect more from us than we can do, because, we "look so good."  Whether turning down a dinner invitation, helping with a charitable organization, babysitting your friend's child, or taking on an extra load at work, its important to learn when to say NO and mean it.  Its not easy, but learn to say No and mean it.  And don't feel guilty about it, you are just taking care of your health.

     Find a hobby or two!  Hobbies are good for everyone and for someone with Lupus its one more thing to take our focus away from the disease.  I am the family genealogist, I collect stickpins, volunteer at church, and travel with my husband.  I do all of these as Lupus permits.  My husband and I like to travel by motorcycle, but I can no longer travel for hours on the back of the bike, so we adjusted.  We invested in a sidecar and now I ride on the back when I can and in the more comfortable sidecar otherwise

     Have a readiness plan for when the flares hit.  There are times when the Lupus will get you so down physically that you can't do the things you normally do. There are a variety of things you can do to make these times easier for yourself.

• Plan for meals you can't cook.  Make some ahead when your feeling good and freeze them.
• Fill a binder with menus from take out restaurants.  Don't forget some of the nicer restaurants that offer take out meals and grocery stores that now offer very good fresh pre-made take home meals.
• Make a list of grocery stores and pharmacies that will take your order by phone or Internet and then deliver.
• Make a list of your medications and place it with your bottles for quick reference.  Also make a small copy and keep it in your wallet.
• Make a list of friends and family who can be contacted for help with such services as babysitting, driving, cooking, shopping or even chatting when your lonely.
• Always make sure your house has a few unread books, word puzzle books, favorite movies, music CD's and other similar items for when you are really restricted to bed.
• I always make sure I have lounge clothes that I am comfortable sleeping in and can be seen in.  When I'm really down, I want to be comfortable but I don't want my friends to drop in and catch me in my pajamas either!

Information About Sun Protective Clothing

There are several companies that sell sun protective clothing (UV protection built-in) exclusively.  You can find everything from children's clothing to adult clothing, sun umbrellas, jackets, and hats.  You can find swimwear, sports wear, dress wear and business wear.  Its becoming more common to find items of clothing and hats with UV protection sold in sporting goods stores and regular department stores, but there are not many items.  I looked for, but did not find, an Ebay store dedicated to this type of clothing.  I did, however, find many members and stores that sell these items on a time-to-time basis.

Here is one type of protective sleeve.  You tuck the upper part, which stretches to fit, under your short sleeve and tighten the cuff at your wrist and suddenly you have long sleeves!

Here is a shawl that can be used at the beach or while dressing up and provides UV protection.

Don't forget you can buy other sun protective products on Ebay, such lip balm, sunglasses, sunscreen, sunblock, make-up with UV protection, and sun tents.

Keywords I have used alone and in combination to search Ebay:

• UV protection
• UVA/UVB protection
• Sun protective
• Sun protective clothing
• Sun protection
• Sun glasses
• Sunglasses
• Sunblock
• Sunscreen
• Hats
• Tents
• Sun Tents
• Sun Shelters
• Sun Shades

RESOURCES:

By far the best resource I have found is the Lupus Foundation of America.  The foundation can help you keep current on Lupus symptoms, treatments and therapies, what's happening in congress about related bills and how to find your local chapter.

Lupus Foundation of America, Inc. 2000 L Street NW, Suite 710, Washington, DC 200036,  Phone 202-349-1155, Website  lupus.org (no www in front of it).

Books:

The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace (2000 Oxford Press) revised and expanded edition

(Since writing this guide, I have written a review of the 1999 edition of  The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace.  The one mentioned above is the current edition of the book.  This book is revised every few years to update the information to current medical standards, new information and to include new medications that have been approved.  I have not read the 2000 edition thoroughly enough to review it.)

Butterfly Traveler by European Lupus Erythematosus Federation (2000 ELEF and Nofartis Pharma Verlag)  "A multilingual medical phrase book for the international traveler who may need medical attention."

Get to Sleep!  How to Sleep Well Despite Lupus by Robert H. Phillips, Ph.D. (1995 Balance Enterprises, Inc.)

When Mom Gets Sick by Rebecca Samuels (1992 LFA)  Written by a 9 year old girl about her own experiences.

Disability Workbook for Social Security Disability Applicants, 5th edition by Douglas Smith (Physicians' Disability Services, Inc.) revised and expanded.

Finally. don't forget to search the Internet using the keyword, LUPUS.