How Lupus Impacted My Life and How I Controlled the Symptoms - Patient's Lounge - Patient Medical Experiences
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How Lupus Impacted My Life and How I Controlled the Symptoms

I am a former RN of 22 years who enjoys writing about various medical topics. I have lived SLE and associated diseases for over 45 years.

My experience with lupus: when I first got it, how it affected me, how I treated it, and my life today.

My experience with lupus: when I first got it, how it affected me, how I treated it, and my life today.

How It Started for Me

The First Signs of Lupus

I remember going to the doctor when I was 21 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 broke out in a red, uncomfortable rash—particularly on my nose and cheeks. This is commonly known as a butterfly rash: one of the symptoms that is absolutely unique to lupus.

The doctor never answered my question. I was treated with many different drugs for asthma, including the steroid prednisone, but I did not get a lupus diagnosis until many years later.

Since that doctor's visit, I have constantly battled fatigue, pain, and anemia. The anemia continued after an abdominal hysterectomy for endometriosis (which wasn't related to the lupus). Occasionally, I went into a type of medical remission (I still had to take 5 mg of prednisone daily), but these remissions never lasted for long.

Eventually, I developed kidney problems, which is common for people with lupus who have the other symptoms I mentioned.

I Have Many Other Conditions

While I'm at it, I'll give you a complete picture of my medical history. I also have severe osteoarthritis, Sjögren’s disease (also an autoimmune disease), chronic sinusitis, and have recently been diagnosed with bronchioectasis, a lung disease that is possibly related to lupus. I take a huge number of medications. I have had 14 surgeries, and I've undergone so many medical tests that I've lost count.

An Overview of Lupus

What Is Lupus?

Lupus is a chronic inflammatory autoimmune disease. The immune system attacks the body's own cells, most commonly the skin, lungs, kidneys, and other organs. There are four types of lupus, the most common one being systemic lupus erythematosus (SLE)—the type I have.

Lupus is most common in women and tends to run in families, which suggests there is a genetic component (although more research is needed in this area). Because I study genealogy, I happen to know that my mother has discoid lupus, and both my grandmother and great-grandmother had systemic lupus. They weren't diagnosed at the time, but their symptoms (kidney disease, arthritis, and multiple, concurrent illnesses) were recorded and raised a red flag for me when I looked at their history.

General Symptoms of Lupus

  • Skin rashes, especially on the face
  • Fatigue
  • Joint pain and stiffness
  • Unexplained fever
  • Sensitivity to light
  • Chest pain
  • Dry eyes
  • Raynaud's Syndrome
  • Sjogren's Syndrome
  • Headaches
  • Brain fog or memory loss

Diagnosis is generally based on the number of symptoms present. Most people only get a few of these symptoms. There is no medical test specifically for lupus.

What's the Life Expectancy for Lupus Patients?

When I was finally diagnosed with lupus, the prognosis was poor—largely because of a misinterpretation of research results. Lupus patients were mistakenly believed to have only about ten years left to live. This was based on studies in which researchers followed patients from the time of diagnosis for 10 years, after which time, the researchers concluded that 80–90% of the patients survived. There were no follow-ups.

Life expectancy for lupus is hard to pinpoint because it depends on the severity of the symptoms and possible complications. However, the prognosis is usually positive with early diagnosis, appropriate treatments, and regular follow-ups.

What I Did to Manage My Lupus Symptoms

I thought my medical condition would improve immediately once I retired from nursing due to the reduced stress of working, but it did not happen that way. I was granted Social Security disability insurance (SSDI) the first time I applied in 2000. 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 about managing my illness. I started reading up on my condition and how I could gain and maintain good health. One book I found helpful was McDougall’s Medicine: A Challenging Second Opinion by John A. McDougall. As I learned more, I tried different strategies to manage my condition.

Here are the things I did that improved my symptoms.

I Started Doing Mild Exercise

I used to avoid exercise because of the excruciating joint pain, but my doctors kept telling me that exercise would help. They suggested I try swimming as it is a low-impact (non-weight-bearing) exercise. Unfortunately, I don’t have convenient access to a pool.

I did join a fitness center, where I worked with the personal trainers on exercises I could do. It wasn’t exactly a bed of roses. I had fractured my hip in the summer of 2008—without falling or having an injury. It was from long-term prednisone use, which caused osteoporosis.

I also became very adept at using a cane. I am more careful now because of my pre-existing conditions. I walked around my neighborhood most days and used pain medication when it was warranted.

I Changed My Diet

I knew I had to improve the way I ate. This was the toughest change for me because I liked my diet just fine the way it was! I started reading many vegan and vegetarian diet books. The library has a good selection. I tried being a vegan for six weeks, but the diet seemed too limiting.

I did better following the Eat to Live Diet by Joel Fuhrman, MD, which I liked. I decided all I had to do was try the diet one day at a time. I found it wasn’t too difficult, and the cravings for junk food were gone after approximately two weeks. I lost 17 pounds, which I gained when I was on a high dose of prednisone. I found I once again fit into my clothes, and that was enough motivation to continue with the diet.

I Replaced My Mercury Tooth Fillings

Current research yields mixed results, but I read enough to be convinced that the mercury in my fillings could be slowly leaching into my system, causing harm. Based on my own experience, I can say that after all my mercury fillings were replaced in October 2009, I actually seemed to feel better!

I Focused on my Spirituality

The other thing that was so important to me was focusing on my spirituality. I had always believed in God, never spent much time meditating or praying. Setting time aside for meditation and prayer helped me immensely. I read uplifting material and the Bible. Quiet time is very therapeutic. Now, I am almost never depressed. I have a can-do attitude and have found peace in my life.

Appreciating What I Have

The last component of my plan actually started years earlier, but I never fully embraced it in the way I have over the past several years. I used to always be stressed out because of my medical problems and the fact that my husband had a stroke at age 59. He hasn't been able to work since the stroke, and he now has some disabilities. However, we both survived and we take care of each other. It is amazing what you can accomplish when your work as a team!

My Life Today

My lupus symptoms have improved. Eventually, I was able to stop the weekly Methotrexate injections. My pain increased for a brief period, but now, it is no different than it was in my earlier years with lupus. I definitely attribute that to the change in my diet. I also lost about a third of my hair by this point (due to the Methotrexate), so I wore a wig while it grew back.

I am fortunate to only have mild kidney disease and not some of the other more serious complications of SLE. However, the osteoporosis due to long term prednisone use is a major problem now. On top of that, I've had two back surgeries, so I still have pain almost continually. Despite that, I have tried to remain 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 know a joy and peace now that was not there for many years. I try to focus on living each day to the fullest—as if each day was my last. I try to enjoy each moment with my extended family and walk around with a smile on my face. I am taking better care of myself. I take a nap in the afternoon as necessary. I started doing genealogy research: the perfect hobby for me since it can just be done on my computer at home.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2009 Pamela Oglesby

Comments

Pamela Oglesby (author) from Sunny Florida on February 14, 2020:

Hi Eric. I don't mind if you stalk me. I had a very nice bithday yesterday.

There have been many rough times over the years. I have to use a walker now but many have it worse than I. I use to give mysef methotrexate injections as I had less side effects that way. It still ws no fun.

I hope you are doing as okay as I am concerned about your health. I want you to be well, at least as much as possible. God bless you, Eric.

Eric Dierker from Spring Valley, CA. U.S.A. on February 14, 2020:

Well it is "nice" to meet a friend who has also been blessed with methotrexate. Misery loves company. ;-)

This is truly inspiring. And I complain. Never went with the cane. Use(d) trekking sticks.

(yes I am stalking you today, I put aside time after your birthday)

Pamela Oglesby (author) from Sunny Florida on February 16, 2014:

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.

Nancy McClintock from Southeast USA on February 16, 2014:

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!!!

Pamela Oglesby (author) from Sunny Florida on September 25, 2012:

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

Nellieanna Hay from TEXAS on September 25, 2012:

:-) Thank you, Pamela.

Pamela Oglesby (author) from Sunny Florida on September 25, 2012:

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.

Pamela Oglesby (author) from Sunny Florida on September 25, 2012:

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

Nellieanna Hay from TEXAS on September 24, 2012:

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 on September 24, 2012:

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!

Pamela Oglesby (author) from Sunny Florida on September 07, 2012:

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

Rajan Singh Jolly from From Mumbai, presently in Jalandhar, INDIA. on September 07, 2012:

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.

Pamela Oglesby (author) from Sunny Florida on August 28, 2012:

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

Theresa Ventu from Los Angeles, California on August 27, 2012:

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 :-)

Pamela Oglesby (author) from Sunny Florida on November 16, 2011:

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.

Nancy McClintock from Southeast USA on November 16, 2011:

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://patientslounge.com/conditions/Recognizng-S...

Pamela Oglesby (author) from Sunny Florida on October 27, 2011:

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

Maria Jordan from Jeffersonville PA on October 27, 2011:

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.

Pamela Oglesby (author) from Sunny Florida on October 21, 2011:

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

Gail Sobotkin from South Carolina on October 21, 2011:

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.

Pamela Oglesby (author) from Sunny Florida on February 02, 2011:

Linda, Thank you so much for your comment.

lindatymensky on February 02, 2011:

You are an excellent hub writer. Linda

Pamela Oglesby (author) from Sunny Florida on October 27, 2010:

Okmom, Thank you for your comments.

Donna Oliver from Midwest, U.S.A. on October 27, 2010:

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

Pamela Oglesby (author) from Sunny Florida on October 14, 2010:

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 from Chicago,IL on October 14, 2010:

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.

Pamela Oglesby (author) from Sunny Florida on September 28, 2010:

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 from Phoenix, AZ on September 27, 2010:

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!

Pamela Oglesby (author) from Sunny Florida on March 27, 2010:

Duchess, Thank you so much for your comment.

Duchess OBlunt on March 27, 2010:

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.

Pamela Oglesby (author) from Sunny Florida on March 19, 2010:

Christina, Thank you for your comment.

Christina from The Heart of the Finger Lakes on March 19, 2010:

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.

Pamela Oglesby (author) from Sunny Florida on March 16, 2010:

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 on March 15, 2010:

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!

Pamela Oglesby (author) from Sunny Florida on January 29, 2010:

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

Maria Teresa Rodriguez - Laurente from San Antonio, Texas, U.S.A. on January 29, 2010:

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.

Kate the Fair on January 29, 2010:

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.

Pamela Oglesby (author) from Sunny Florida on January 29, 2010:

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 on January 29, 2010:

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.

Pamela Oglesby (author) from Sunny Florida on January 28, 2010:

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 on January 28, 2010:

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.

callmesplash7 on January 01, 2010:

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)

Pamela Oglesby (author) from Sunny Florida on September 30, 2009:

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.

Jordan Dill on September 29, 2009:

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 from malang-indonesia on September 21, 2009:

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 from Nashville on September 14, 2009:

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 on August 31, 2009:

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

Carrie DeSha from Atlanta, GA on August 27, 2009:

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

Diana Solomon on August 26, 2009:

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!

Simon Cook from NJ, USA on August 25, 2009:

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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