Lupus - My Story and Changes I Made

Something to Smile About

Traveling with all this beautiful scenery made this an especially good day. My photo.
Traveling with all this beautiful scenery made this an especially good day. My photo.

Systemic Lupus Erythematosus -My Story

I have lived with systemic lupus and all the numerous diseases associated with lupus for the past 40 years. I remember going to the doctor when I was 21 years of age with the onset of asthma and asking him “Is it possible to be allergic to the sun?” Every time I was in the sun I would break our in a red uncomfortable rash, especially on my nose and cheeks which is called a “butterfly rash” and one of the few criteria that is absolutely unique to lupus. The doctor never answered my question. I was treated with many different drugs for asthma which included prednisone. I did not get a lupus diagnosis for another 17 years. I have battled fatigue constantly, pain and anemia, although I had a total hysterectomy. I was in a type of medical remission occasionally which meant taking 5 mg daily of prednisone daily blunted the effects of the disease. Eventually lupus attacked my kidneys

To complete my medical picture, I have osteoarthritis, Sjogren’s disease, fibromyalgia, chronic sinusitis, and have recently developed asthmatic bronchitis. I previously had asthma and Bell’s Palsy. I take a huge number of medications. I have had 14 surgeries and I can’t even remember how many types of medical tests. Having said all that, I probably live a better quality of life today than I did 10 years ago. When I was first diagnosed the prognosis was poor with an expected ten more years of life.

What is Lupus?

Systemic Lupus Erythematosus is a systemic disease of the immune system. It is an autoimmune disease that may be acute or chronic. The body’s tissues are attacked by its own immune system. There are two types of lupus; Discoid lupus affecting just the skin and Systemic lupus affecting any part of your body it chooses.

Lupus tends to run in the females of families, although it is not considered hereditary. Since I study genealogy, I happen to know that my mother has Discoid lupus, my grandmother and great grandmother had systemic lupus. It just was not diagnosed back then. Their kidney disease, the rashes, the multiple illnesses and fatigue are a red flag to me that these were lupus symptoms.

Getting Fit

Photo Courtesy of Cartoon Stock
Photo Courtesy of Cartoon Stock

Plan to Change My Life

I had been a registered nurse for 22 years, but was granted Social Security Disability the first time I applied in 2000. I thought my medical condition would improve immediately without the stress of working, but it did not happen that way. I kept seeing my doctors and followed their advice concerning medications and activity. About two years ago I decided I needed to be more proactive in my illness. I started reading more articles about good health and lupus good health specifically.

The first thing I did was start exercising. I had avoided exercise because of the pain in my joints, but the doctors kept telling me that exercise would help. They suggested I swim, as this is non-weight bearing, but I don’t have a pool that is convenient. I joined a fitness center and they worked with me on what I was able to do. It wasn’t exactly a bed of roses as I did fracture my hip in the summer, 2008, without falling or having an injury. It was from long term prednisone use. I became very adept at using a cane for a few months and am much more careful now. I walk around my neighborhood most days or use a pain medication if warranted.

Next, I started replacing all my old mercury tooth fillings. The studies are mixed as to the final result but I had read enough that I was convinced. If mercury is slowly leached into my system by these old fillings, then this is something I can change. I finished that process last October, 2009.

The next component of my healing program had to be diet. It was the toughest one for me as I liked my diet just fine! However, I started reading many vegetarian diet books. The library has a good selection. I liked “Eat to Live’ by Joel Fuhrman, M.D. and “McDougall’s Medicine: A Challenging Second Opinion” by John A. McDougall. I tried being a vegan for a six weeks but the diet seemed too limiting. I did better following the plan in “Eat to Live.” I decided all I had to do was try the diet a day at a time. I found it wasn’t too difficult and the cravings for the junk food left after approximately two weeks. I have lost 17 pounds and now once again fit into my clothes, so that is an inspiration to continue with the diet. Secondly, and most importantly, I was able to stop the weekly Methotrexate injections. My pain was increased for a brief period, but now it is no different than before. I definitely attribute that to the diet.

The last component of my plan actually started years earlier but I never embraced it in the way I have over the past year. I was stressed out much of the time due to my medical problems and my husband had a stroke at age 59. Now, I take time to read uplifting spiritual material and my Bible. I take time to pray and I meditate. Quiet time is very therapeutic. Even when it seems like I don’t have time to do these things, they are the cornerstone of the change in my life. I know a joy and peace now that was not there for all those years. I try to focus on living each day to the fullest as if it were my last. I take care of myself better. I take a nap in the afternoon as necessary. I started doing genealogy research as this was the perfect hobby, as much can be done on the computer in your home and you can stop anytime you want.


Lupus

Life Today

I am grateful for my life today. It is getting better and there are a lot of new drugs coming on the market in the next couple of years that actually treat this disease, not just the symptoms. I am fortunate to only have mild kidney disease and not some of the other more serious features of Lupus. My goal is to see my grandchildren graduate from college, to enjoy each moment with my extended family and walk around with a smile on my face.

© 2009 Pamela Oglesby

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Comments 48 comments

SimeyC profile image

SimeyC 7 years ago from NJ, USA

I am glad you are grateful for life - my wife has lupus and struggles with it often - but she does take each day as a blessing and this positive attitude does help a little...thanks for sharing.


Diana Solomon 7 years ago

I found your article very informative and having known you for almost 50 years, I didn't know that you developed asthma when you were 21. I do think that pursuing a special diet may help you with these illnesses and may improve your health. Good luck, Pam!


Carrie DeSha profile image

Carrie DeSha 7 years ago from Atlanta, GA

I am so inspired by your positive outlook. Thanks for another great article!


Roberta99 profile image

Roberta99 7 years ago

My daughter has lupus and this is a very good article. Thanks.


Steviebeth1227 profile image

Steviebeth1227 7 years ago from Nashville

I have lupus. I find your article to be very well written. Our journeys through this disease are quite similar. I am desperately trying to get motivated to leave my bed, get dressed every day and live life the best way I can. Thanks for sharing your story. I always find it inspirational and helpful read others stories like situations. Thanks for article!


prasetio30 profile image

prasetio30 7 years ago from malang-indonesia

great experience. thanks for sharing with us. many people don't have spirit facing this disease. I think you are though woman. I hope God give the best for you. fill the day with spirit and always pray. Never give up!


Jordan Dill 7 years ago

WOW!!!!!!!!! I have always been interested in the details about certain diseases and this happened to be one of them. Thanks soooo much for the knowledge and understanding you have given me. Your story is truly inspirational and definitely a testimony to other people who are dealing with such tribulations. With what you said about stress, I've found something that is very helpful. There is a scripture that goes something like this (I think) ....Cast your burdens upon the Lord and he will take care of you..... Or something along those lines. I have found after a lot of practice and patience with this that God always provides to those who ask and seek him. After doing this the amount of stress in my life has decreased immensely. You are absolutely a warrior.


Pamela99 profile image

Pamela99 7 years ago from United States Author

Thanks for all the interest in this article. Lupus is a tough disease and can affect each individual differently. Thanks for the scripture Jordan. I wish all the best to those suffering with this disease.


callmesplash7 6 years ago

I read your article as my mother had lupus. She also had manyyy surgeries and illnesses and died in her 50's. What exactly IS lupus and what are the symptoms because my mother lived an airplane trip away and she never really explained it to me. Thanks Julie :O)


tipperary profile image

tipperary 6 years ago

Your article is needed to provide information to others, i have heard of this before. Its great to see people who wait years for a diagnosis provide help like this to others to get a diagnosis sooner.


Pamela99 profile image

Pamela99 6 years ago from United States Author

Tipperary, Thank you for your comment and welcome to my hubpage. I want to get the word out as huge numbers of people have Lupus, yet most people don't know much about it. Thanks again.


Kate the Fair 6 years ago

This is a wonderful article, very well written. Thank you for sharing this. My daughter may have lupus, but the doctors can't seem to come to a conclusion. They have diagnosed her with everything from IBS to thyroid disease, to kidney disease while she was testing a small positive for lupus. She has been ill since just before her pregnancy nine years ago and got worse after the birth of her son. What really worries me is the constant, everyday vomiting along with all the other symptoms. She can't seem to get a straight answer. How do you ever get a clear diagnosis? Again, your article is very inspiring.


Pamela99 profile image

Pamela99 6 years ago from United States Author

Kate, I am so sorry to hear about your daughter. I know how much we love our children and it hurts to see them suffer. There is no exact test for lupus. They do an ANA titer and it is positive about 95% of the time if you have lupus. I have another article written called Lupus the Disease which explains more about the disease. There are 11 criteria common to lupus and the more of those criteria you have, the more likely your diagnosis. Vomiting is not one of those, but with auto-immune disease your body is not able to differential your healthy tissue from bacteria, so your white blood cells can attack any organ. Kidney problems are a problem for 50% of the people that have lupus; fatigue always, and its common to have anemia. Try to find the best rheumatologist that you can. So many doctors misdiagnose lupus for years as it affects different people in different ways. Daniel Wallace is considered the best source of information in books and his book taught me a lot in the beginning. Thyroid disease is commonly associated with auto-immune disease also. Fight for a diagnosis because this is not in her head (as I was once told). My prayers are with you.


Kate the Fair 6 years ago

Thank you so much, Pamela. I will tell my daughter and we will follow your advice. By the way, my daughter has also been told many times that it is all in her head and tried to put her on some cocktail of medications for depression. They made her even more sick. She is not depressed, she is sick. Thanks, again.


Teresa Laurente profile image

Teresa Laurente 6 years ago from San Antonio, Texas, U.S.A.

Pamela99, thank you for the follow and for the kind words. You are a brave person and determined to live and enjoy life. Keep it up. Post more about Lupus as this disease has not been much known to a whole lot of people. Do share with us everything possible for anyone to know so that they can be diagnosed sooner. Thank you for your sharing. God bless you in your journey. More power.


Pamela99 profile image

Pamela99 6 years ago from United States Author

Teresa, Thank you for the lovely comment. That is exactly my plan.


Jo W profile image

Jo W 6 years ago

Thanks for an inspiring hub. I wish you well! :) I was diagnosed with a very severe case when I was 23. I had a beautiful daughter at age 27, who is now 20 and studying a Masters Of Teaching! I have been off all medication for 19 years, and in remission for that period also. I simply want to let others know that there is hope! If I had strictly listened to doctors I would have still been on cortisone as a "precaution" and suffering the ill effects of that! My best advice sounds cheesy but is to do what ever it takes to be happy and keep stress down (as well as stay out of the sun!) Hope all is well for you now!


Pamela99 profile image

Pamela99 6 years ago from United States Author

Jo, Thank you for your positive advice. It is wonderful to know our are in remission for that number of years. I think your advice is very important. Thank you.


ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes

Thank you for sharing your story. It is a shame that you went all of those years without being properly diagnosed. Best of luck to you.


Pamela99 profile image

Pamela99 6 years ago from United States Author

Christina, Thank you for your comment.


Duchess OBlunt 6 years ago

Pamela99, what a courageous woman you are. Great information in your hub, but better than that is the encouragement you give by sharing your joy in life. What a testament.


Pamela99 profile image

Pamela99 6 years ago from United States Author

Duchess, Thank you so much for your comment.


lisabeaman profile image

lisabeaman 6 years ago from Phoenix, AZ

Thanks for writing this. I hate having lupus and often don't tell people that I have it. It has certainly attacked my vanity... you know, I can deal with the pain, but when it shows up on my face (or when I swelled up from prednesone)I really had to face my inner demon of pride. Not sure I've conquered him just yet!


Pamela99 profile image

Pamela99 6 years ago from United States Author

Lisabeman, I understand completely. Pride has been a problem for me too. All that prednisone has a lot of bad side effects. There is a new drug coming out soon just for lupus so maybe that will end the prednisone. Thanks for your comment.


ghomefitness profile image

ghomefitness 6 years ago from Chicago,IL

My teenage daughter was diagnosed with Lupus about 2 years ago and it has been hard on her at times. We have cut down on dairy and tried to eliminate gluten from her diet and it helped. I added a product called Ultimate Meal and she had much more energy. the problem was Ultimate Meal is the worst tasting thing on the planet. It was like pulling teeth to get her to drink it. I spent hundreds of dollars a month on organic fruit to get her to drink the stuff. We found a compromise with an antioxidant that tastes much better. It has been a few months and it seams to help her immune system. I have the whole family on the product and my wife and I liked it so much we became distributors. It is a great product and it helps but unfortunately it has not gotten rid of the ANA's.


Pamela99 profile image

Pamela99 6 years ago from United States Author

ghomefitness, I didn't know about the Ultimate Meal. I haven't drank milk in years and when I do the best is when I eat almost exclusively vegetarian but I am not always consistent. I hope your daughter's health improves. There is a new drug out or coming out very soon that might help depending on her symptoms. Best of luck, Thank you for sharing your information.


okmom23 profile image

okmom23 6 years ago from Midwest, U.S.A.

Thank you for writing such an uplifting hub! Very informative and clearly written about such a mysterious disease.


Pamela99 profile image

Pamela99 6 years ago from United States Author

Okmom, Thank you for your comments.


lindatymensky profile image

lindatymensky 5 years ago

You are an excellent hub writer. Linda


Pamela99 profile image

Pamela99 5 years ago from United States Author

Linda, Thank you so much for your comment.


Happyboomernurse profile image

Happyboomernurse 5 years ago from South Carolina

Excellent article which has great impact because you have shared your personal experience along with important facts.

Voted up, useful, awesome and interesting. Thanks so much for sharing this information and all the other quality medical hubs that you write.


Pamela99 profile image

Pamela99 5 years ago from United States Author

Happyboomernurse, I always hope people who might have the disease but are as yet undiagnosed will be helped. I very much appreciate your comments.


marcoujor profile image

marcoujor 5 years ago from Jeffersonville PA

Dear Pamela,

I am grateful to Gail for leading me to your story. I have greatly admired your writing style, especially with our love of Nursing as a similarity.

I am inspired by the Holistic strategies that you have chosen to handle lupus and am appreciative of the information you have shared.

You are amazing. Voted UP & UABI, mar.


Pamela99 profile image

Pamela99 5 years ago from United States Author

Dear Mar, You are so kind. I always appreciate your comments and especially this one. Thank you for all the votes!


nancynurse profile image

nancynurse 5 years ago from Southeast USA

I also have had lupus for many years and am an RN I am trying to get disability now. I was in bed for almost a year. I hate the time I could not be more a part of my children's life. Thanks for your article. Here is minehttps://healdove.com/disease-illness/Recognizng-Sy...


Pamela99 profile image

Pamela99 5 years ago from United States Author

nancynurse, I hope you get your disability. We have a lot in common. I got my disability the first time I applied as I had tons of medical records and was really sick also. Thanks for your comment.


the girls profile image

the girls 4 years ago from Los Angeles, California

Your life story is very inspiring Pamela99. I have a friend who was diagnosed lupus too. She's very grateful for her recovery and is doing much better today than ever before. Voted up :-)


Pamela99 profile image

Pamela99 4 years ago from United States Author

the girls, I am glad to hear your friend is doing well. I appreciate your comments.


rajan jolly profile image

rajan jolly 4 years ago from From Mumbai, presently in Jalandhar,INDIA.

Wonderfully inspiring hub. Glad to see that you took charge instead of them leading you on. I love your spirit, Pamela. Being positive in adversity surely helps tackle problems better.

Voting up, useful interesting, awesome and sharing on, FB, twitter and G+1.


Pamela99 profile image

Pamela99 4 years ago from United States Author

rajan jolly, I agree that attitude is so important as is being proactive. Thank your so much for your comments.


healthylife2 profile image

healthylife2 4 years ago from Connecticut, USA

You are such an inspiration. I also discovered being proactive is so important after being diagnosed with a serious illness. My husband and I were both inspired by the book Eat to Live and that diet seems easy to stay with and based on an intelligent plan. Voted up!


Nellieanna profile image

Nellieanna 4 years ago from TEXAS

Dear, dear Pamela. What an excellent article! I've a dear friend who has lupus. I will definitely tell her to visit it. Your valuable explanation, information and especially your own journey and path to some relief and improvement will be so helpful! Just seeing your lovely smile and glow in your picture is inspirational.


Pamela99 profile image

Pamela99 4 years ago from United States Author

healthylife, That book does seem to help with my health. Thank you for stopping by and I appreciate your comments.


Pamela99 profile image

Pamela99 4 years ago from United States Author

Nellianna, Thank you for stopping by to comment. It is always a pleasure to hear from you, just as it is to read your hubs. I wish you friend well and I appreciate your comments.


Nellieanna profile image

Nellieanna 4 years ago from TEXAS

:-) Thank you, Pamela.


Pamela99 profile image

Pamela99 4 years ago from United States Author

Nellienna, Thanks for stopping my and I appreciate the comments.


nancynurse profile image

nancynurse 2 years ago from Southeast USA

Thanks so much for sharing. We have written before. I have lupus too and write on hubpages. It helps to read about a fellow sufferer. Voted up!!!


Pamela99 profile image

Pamela99 2 years ago from United States Author

Nancy, I appreciate your comments and I know other people have written about lupus as it seems to be a more common disease than you would think. It does help to read other people's experience.

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