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Lupus - My Story

Updated on April 26, 2018
Pamela99 profile image

I spent 22 years in the nursing profession, and I enjoy writing about medical issues. I'm also interested in history, genealogy, and travel.

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 45 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”.

This rash is 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 an abdominal hysterectomy. This helped slightly with the anemia, but was done due to endometriosis, which has nothing to do with lupus.

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 severe osteoarthritis, Sjogren’s disease, 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,

When I was first diagnosed the prognosis was poor with an expected ten more years of life for lupus patients at that time.

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, but their symptoms are recorded. Their kidney disease, the rashes, arthritis, the multiple illnesses and fatigue are a red flag to me that those were lupus symptoms.

Other symptoms include: fatigue, joint pain and stiffness, fever, skin lesions that worsen in the sun, chest pain, dry eyes, Raynaud's Syndrome, headaches, confusion and memory loss. Most people only get a few of the symptoms, but Systemic Lupus can only be diagnosed through the number of patient symptoms. There is no medical test absolutely specific for lupus.

Arthritis

Source

Changes I Made

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.

  1. 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.
  2. 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, which caused osteoporosis.
  3. I became very adept at using a cane for a few months and am was more careful. I walked around my neighborhood most days or use a pain medication if warranted.
  4. 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.
  5. 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, MD and “McDougall’s Medicine: A Challenging Second Opinion” by John A. McDougall. I tried being a vegan for six weeks but the diet seemed too limiting.
  6. 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 lost 17 pounds, which was gained when I was on high doses of prednisone. Once again I fit into my clothes, so that is an inspiration to continue with the diet.
  7. The other thing that was so important to me, was to have a kind of spiritual awakening. I had always believed in God, but know I spent time in meditation and prayer, which helped me immensely. I read uplifting material and the Bible. Quiet time is very therapeutic. I am almost never depressed. I have a can-do attitude and peace in my life.

I was able to stop the weekly Methotrexate injections. My pain was increased for a brief period, but then it is no different from my the earlier years. 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 several years. I use to be stressed out much of the time due to my medical problems, and my husband had a stroke at age 59. He has some disabilities, and he never was able to work again. But, he survived, and we take care of each other. It is amazing what you can accomplish when your work together.

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 am better at taking care of myself. I take a nap in the afternoon as necessary. I started doing genealogy research as this was the perfect hobby since much can be done on the computer in your home.

Exercise - Yes Walking

Source

Lupus

Life Today

My lupus symptoms have improved, and there are new drugs coming on the market in the next couple of years that actually treat this disease, not just the symptoms. Benesta is the first medication that actually treats lupus that is on the market over the past fifty years.

I am fortunate to only have mild kidney disease and not some of the other more serious features of Lupus. However, the osteoporosis due to long term prednisone use is a major problem now. Having had two back surgeries, I still have pain almost continually. I have remained as independent as possible.

My goal was to see my grandchildren graduate from college, which has happened for two and other one is working on it. I try to enjoy each moment with my extended family and walk around with a smile on my face.

The copyright, renewed in 2018, for this article is owned by Pamela Oglesby. Permission to republish this article in print or online must be granted by the author in writing.

Comments

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  • Pamela99 profile image
    Author

    Pamela Oglesby 4 years ago from United States

    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.

  • nancynurse profile image

    Nancy McClintock 4 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
    Author

    Pamela Oglesby 5 years ago from United States

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

  • Nellieanna profile image

    Nellieanna Hay 5 years ago from TEXAS

    :-) Thank you, Pamela.

  • Pamela99 profile image
    Author

    Pamela Oglesby 5 years ago from United States

    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.

  • Pamela99 profile image
    Author

    Pamela Oglesby 5 years ago from United States

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

  • Nellieanna profile image

    Nellieanna Hay 5 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.

  • healthylife2 profile image

    Healthy Life 5 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!

  • Pamela99 profile image
    Author

    Pamela Oglesby 5 years ago from United States

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

  • rajan jolly profile image

    Rajan Singh Jolly 5 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
    Author

    Pamela Oglesby 5 years ago from United States

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

  • the girls profile image

    Theresa Ventu 5 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
    Author

    Pamela Oglesby 6 years ago from United States

    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.

  • nancynurse profile image

    Nancy McClintock 6 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
    Author

    Pamela Oglesby 6 years ago from United States

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

  • marcoujor profile image

    Maria Jordan 6 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
    Author

    Pamela Oglesby 6 years ago from United States

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

  • Happyboomernurse profile image

    Gail Sobotkin 6 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
    Author

    Pamela Oglesby 7 years ago from United States

    Linda, Thank you so much for your comment.

  • lindatymensky profile image

    lindatymensky 7 years ago

    You are an excellent hub writer. Linda

  • Pamela99 profile image
    Author

    Pamela Oglesby 7 years ago from United States

    Okmom, Thank you for your comments.

  • okmom23 profile image

    Donna Oliver 7 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
    Author

    Pamela Oglesby 7 years ago from United States

    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.

  • ghomefitness profile image

    ghomefitness 7 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
    Author

    Pamela Oglesby 7 years ago from United States

    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.

  • lisabeaman profile image

    lisabeaman 7 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
    Author

    Pamela Oglesby 8 years ago from United States

    Duchess, Thank you so much for your comment.

  • profile image

    Duchess OBlunt 8 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
    Author

    Pamela Oglesby 8 years ago from United States

    Christina, Thank you for your comment.

  • ChristinaScibona profile image

    Christina 8 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
    Author

    Pamela Oglesby 8 years ago from United States

    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.

  • Jo W profile image

    Jo W 8 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
    Author

    Pamela Oglesby 8 years ago from United States

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

  • Teresa Laurente profile image

    Maria Teresa Rodriguez - Laurente 8 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.

  • profile image

    Kate the Fair 8 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.

  • Pamela99 profile image
    Author

    Pamela Oglesby 8 years ago from United States

    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.

  • profile image

    Kate the Fair 8 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
    Author

    Pamela Oglesby 8 years ago from United States

    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.

  • tipperary profile image

    tipperary 8 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.

  • profile image

    callmesplash7 8 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)

  • Pamela99 profile image
    Author

    Pamela Oglesby 8 years ago from United States

    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.

  • profile image

    Jordan Dill 8 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.

  • prasetio30 profile image

    prasetio30 8 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!

  • Steviebeth1227 profile image

    Steviebeth1227 8 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!

  • Roberta99 profile image

    Roberta99 8 years ago

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

  • Carrie DeSha profile image

    Carrie DeSha 8 years ago from Atlanta, GA

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

  • profile image

    Diana Solomon 8 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!

  • SimeyC profile image

    Simon Cook 8 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.

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