Lupus: Support and Survival
Coping with Lupus
Lupus is a Family Affair
Preventing Fatigue Due to Lupus
Need to go to the Emergency Room?
Staying healthy with lupus takes extra effort, and coping with symptoms of the disease can be stressful. If you have lupus, you may find it helpful to practice relaxation techniques like meditation and yoga.
Finding support through friends and family or an organized support group also may be helpful. To locate a support group, contact the Lupus Foundation of America or the Arthritis Foundation.
Never be ashamed of asking for help from friends, family, or physicians.
Aromatic amines, silicone and silica dust, alfalfa sprouts, hydrazines, tartrazines, and UV light are environmental triggers that exacerbate the condition and should be avoided.
Regular aerobic exercise to build up endurance, and rest as needed. Swimming is one of the best exercises as the water takes off the stress of affected muscles.
Avoidance of both physical and emotional stress which may cause flare-ups is a must.
The research is pointing more and more to the benefits of a holistic approach.
Research is often far too slow and lags well behind the intuitive wisdom of many patients. Taking better care of your mental health will not remove the need for the usual medical care, but stress is a known cause of flares and learning what course of action is best for you is important.
Better mental health is likely to help reduce disease activity and the dose of medication required to maintain good disease control. Feeling better with yourself will help you to cope with the illness in a much happier way.
Things you can do to improve your mental and physical health.
- Practice stress management
- Meditate twice a day
- Listen to calming and harmonious music
- Communicate well with those around you
- Form healthy relationships
- Keep a journal about important events in your life
- Exercise regularly
- If interested then take up practices like Tai Chi, yoga or meditation.
- Keep the body and mind well employed.
- Maintain a healthy and balanced life-style
Lupus is a Family Affair
Lupus is a family affair. It affects the whole family, not just the person who is the patient.
The spouse of the patient would be wise to attend a couple of the doctor visits to the Rheumatologist. It will help them understand what is going on .. as well as be another set of ears to hear what the doctor is saying .. another mind to interpret or to ask questions of the doctor .. as well as being supportive of the spouse.
Children should be sat down and told that mommy or daddy is sick. Reassure them, but don't lie to them. Yes .. there is a chance of mommy or daddy dying, but if mommy or daddy does what the doctor says to do .. takes their medicine like they are supposed to .. and gets the rest they need, then their chances of dying is very slim.
Children will hear what others say and will wonder who is telling the truth .. their parents or the other people. They have enough confusion in their lives without having to deal with the uncertainty of being lied to by their parents.
Parents of adults with Lupus should be given print outs of information sheets, or a book, on Lupus. It will be something they can read on their own or to refer back to when they are uncertain.
Lupus is a family affair .. it doesn't affect just one person.
Remembering this will make it easier on the whole family when it comes time to deal with a crisis.
Preventing Fatigue Due to Lupus
Fatigue is a very common complaint of all people with systemic lupus erythematosus (SLE), even when no other symptoms of active disease are present. The fatigue of lupus isn't just being tired. You may feel an extreme fatigue that interferes with many aspects of your daily life. You may find that you are unable to participate in your normal pattern of daily activities, such as working, caring for your family and home, or participating in social activities. The exact cause of this fatigue is not known.
Your doctor and nurse will probably ask you about your lifestyle and patterns of daily living and activity. They will also evaluate your overall fitness, health, nutrition, and ability to handle stress.
Your doctor or nurse will then be able to advise you about how your fatigue can be reduced. It is important to remember that getting enough rest, maintaining physical fitness, and keeping stress under control are absolutely necessary for anyone with lupus.
Changes in your lifestyle and patterns of daily living and activity may not be easy to accept. In addition, the changes necessary for you to cope with your disease today may be different from the changes you may have to make later as your disease changes. A positive attitude and a well-thought-out, but flexible, plan of action will increase the chances that you can make these changes successfully.
Dealing with stressful issues and problems takes a lot of energy. If you feel stressed out, talk with your doctor or nurse. They may be able to provide you with help for your problem or direct you to someone else who can.
Need to go to the Emergency Room?
A trip to the emergency room is never a pleasant experience, but even more so when you can't speak for yourself or convey medical needs to the attending medical personelle.
A list of all medications, allergies, surgeries, names of doctors, and past medical history is your best defense against delayed medical treatment because the ER doctor doesn't know how to treat you.
Following is an example of such a list:
MEDICATION and ALLERGY LIST for BRENDA E. SEWELL
Updated September 2003
Address: 1234 My Street St. Orlando, FL 32803 (407) 123-4567 SS# 123-45-678
Spouse: Jack R. Sewell SS# 234-56-789
Spouse Employed @ business name, address and phone
Insurance: List insurance name, policy number, address and phone
Asthmatic – Diabetic (Insulin Dependent) (1995) – Lupus (SLE) (2/2000) –
Pulmonary Hypertension (3/2001) – Congestive Heart Failure (2000) -- Angina
Fibromyalgia – GERD – Degenerative Disk Disease -- A Neg. Blood
Four heart attacks, numerous respiratory arrests
UNDERLINED ITEMS IN BOLD LETTERS CAUSE ANAPHYLACTIC REACTION,
OTHERS CAUSE WHEEZING, HIVES, OR BOTH
BETADINE IODINE & IODINE CONTRAST DYES
IODINE & IODINE CONTRAST DYES
Tartrazine (yellow-dye #5)
Food Allergies: FISH, SHRIMP, SHELLFISH, MUSHROOMS, MSG, Meat Tenderizer, beets, Pineapple, Tartrazine (yellow-dye #5)
Insect Allergies: ANTS, BEES, WASPS
Inhalation Allergies: Strong Cleaning fluids, Perfumes, Cigarette smoke, Insecticides
Hospital Stays and Surgeries
List all hospital stays with why you were admitted, date of admittance, and which hospital.
Also list any major procedure like MRI, CT scan, endoscopy, etc.
People to Notify:
Names of people and their phone numbers hospital personnel need to notify in case of an emergency
INSULIN SCHEDULE for Brenda Sewell - Dr. Constant
Humulin NPH: 32 units in a.m. and 28 units at 10 p.m.
Humalog Insulin – 4 times a day
Sliding Scale for Humalog
Breakfast Lunch Dinner Bedtime (10 - 11 p.m.)
Level Units Used Units Used Units Used Units Used
Below 80 8 units 12 units 10 units Below 150 0 units
81 - 100 10 units 16 units 12 units 151 - 180 3 units
101 - 120 12 units 20 units 16 units 181 - 220 7 units
121 - 150 16 units 24 units 18 units 221 - 260 10 units
151 - 180 20 units 28 units 20 units 261 - 300 13 units
181 - 220 22 units 32 units 24 units 301 - 350 18 units
221 - 260 28 units 36 units 26 units 351 - 400 23 units
261 - 300 30 units 40 units 30 units Over 400 28 units
301 - 350 32 units 40 units 30 units
351 - 400 34 units 40 units 30 units
Over 400 36 units 40 units 30 units
DOCTORS TO NOTIFY:
List of your doctors .. their specialty .. and their phone numbers.
HOSPITAL & MEDICAL RECORDS CAN BE OBTAINED FROM:
List of hospitals, centers, or labs that have copies of your x-rays, reports, or other information.
Additional Drugs I Can Take with No Adverse Reaction:
List of medications you have taken in the past with no problems.
(every day - all the time)
Continuous oxygen 2 liters while sleeping – PRN during daytime
Actos 15 mg once daily in a.m.
Humulin NPH Insulin – 32 units in a.m. and 28 units at 11 pm
Humalog sliding scale (insulin given 3-4 times daily)
Plaquenil 200 mg twice daily
Prednisone 10 mg once daily in a.m.
Prevacid 30 mg once daily in p.m.
Prinzide 20/12.5 mg twice daily
Proventil MDI 2 puffs 4 times daily
Singulair 10 mg once daily in p.m.
Theophylline 300 mg twice daily
Tricor 160 mg only daily in p.m.
WellButrin 200 mg twice daily
Xanax 0.25 mg 3x daily
Only As Needed:
Atarax 25 mg TID
Benadryl 50 mg or Vistaril
Diflucan 100 mg
Proventil Updrafts .5 ml in 3cc saline
For Angina: NitroQuik tablets
For Lupus & Fibromyalgia use one of these:
Ultracet 1 - 2 tabs. every 4 hours; OR
Demerol 50 mg every 4 hours
For Migraine: Midrin
Need help with depression?
When the doctor asks, "Are you depressed?"
Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.
Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
Information gathered from :
Searching for ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online. LUPIES has been a wonderful gift. I have learned more from the information I found on the support web site from other sufferers of Lupus than I did from my doctor. Thank you fellow Lupies! With a very special thank you to Deanna!
May your days be pain free!
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All literary works and original artwork by Rion on this page,
unless otherwise noted, are the sole property of Brenda Sewell.
I do not mind sharing but please ask me first.
© 1998 - 2004 Brenda "Rion" Sewell
Email me at brendarion at cfl.rr.com
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