12 Things I want you to know about living with Lupus

lupuscollage

May is Lupus Awareness Month.

I have systemic lupus erythmatosus {SLE or lupus for short}, diagnosed in October 2009.

I have friends that live with this disease as well.  Day in and day out, year after year lupus does not go away.

I don’t spend a lot of time focusing on lupus and the effect it has on my life but, at the same time, I am not embarrassed or ashamed of it.  I want to educate people about this insidious disease that needs a cure.  I am pulling back the curtain on this thorn in my flesh today to help raise awareness about this illness, one that affects more than 1.5 million people in the US alone and an estimated 5 million people around the world.

The Lupus Foundation of America gives a brief description of lupus:

“Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.”

Lupus can attack almost every major system of the human body including the cardiovascular system, genitourinary system, central nervous system, GI system, and the skin.  Personally, my kidneys, bladder, liver, GI tract, optic nerves and skin have been attacked so far, not including the inflammation of my joints.

The symptoms of lupus include: {ones I have experienced or experience are in bold}

  • Joint pain and stiffness, with or without swelling
  • Muscle aches, pains, or weakness
  • Fever with no known cause
  • Feeling very tired
  • Butterfly-shaped rash across the nose and cheeks
  • Other skin rashes
  • Unusual weight loss or weight gain
  • Anemia (uh-NEE-me-uh) (too few red blood cells)
  • Trouble thinking, memory problems, confusion
  • Kidney problems with no known cause
  • Chest pain when taking a deep breath
  • Sun or light sensitivity
  • Hair loss
  • Purple or pale fingers or toes from cold or stress

Less common symptoms include:

  • Blood clots
  • Seizures
  • Sores in the mouth or nose (usually painless)
  • Severe headache
  • Dizzy spells
  • “Seeing things”, not able to judge reality
  • Feeling sad
  • Strokes
  • Dry or irritated eyes

I have more doctors than many of the elderly patients I work with in the nursing home.  Every -ologist you can think of is needed to care for someone living with complications of SLE.  The two most important specialists I see are my rheumatologist {the specialty that treats lupus} and my hematologist {the doctor that specializes in treating blood clotting disorders}.

 

Here are 12 things I want you to know about living with Lupus:

  1. Lupus can be fatal {and it almost killed me}.  Unlike many other autoimmune diseases, 15% of people diagnosed with SLE will die from complications of the disease {source}.  The complication that almost took my life? Pulmonary emboli {blood clots in my lungs}. One minute I was watching TV with my husband, the next I was unconscious and he was calling 911. I spent almost a week in the hospital on powerful blood thinning agents to rid my lungs of the clots and will be on a blood thinner known as Coumadin for the rest of my life.  Lupus is a serious illness and more needs to be discovered about what causes it so that a cure can one day be found.
  2. There is no cure for lupus.  While there are treatments for the symptoms, there is currently no cure for this debilitating disease.  I take an anti-malarial medication called Plaquenil to keep the worst of my lupus symptoms at bay.  The anti-malarial medications decrease inflammation and interact in some scientific way to decrease the overactive immune antibodies that are attacking their host {me}.  All I know is my health has improved a lot since starting Plaquenil and I am thankful for scientists that figure out that medicines created for one purpose {fighting off malaria} can also be used to ward off the effects of another {in this case, SLE}.  When I am having a flare {a period of time where symptoms worsen significantly} I have also taken corticosteroids.  I detest the way steroids make me feel and using them long term can cause a myriad of health problems all their own but, at times, they help decrease inflammation and shorten the length of flares. Prednisone also makes me crave Dairy Queen and homicidal, just so you know.
  3. Lupus hurts.  I am in a moderate level of pain most days.  The pain is severe during a flare.  Most of my pain is in my hands and feet, although an overall achiness does accompany a flare.  I’m also prone to headaches, which is also common with lupus.  On top of that, lupus causes damage to many different organs in the body.  One area that has been affected in me is my bladder.  I have frequent UTI’s {urinary tract infections} which aren’t comfortable. I also have lupus cystitis, which is a chronic inflammation of my bladder- also uncomfortable.  I am stubborn and will not take any pain medications that affect my cognition, primarily narcotics.  Because lupus has attacked my liver in the past, I am very limited in the amount of Tylenol I can take {two 500mg tablets a week} and ibuprofen isn’t an option because I am already on blood thinners.  I use heat, ice, rest, a TENS unit, baths and more rest to treat my pain.
  4. Lupus doesn’t just affect me.  Yes, I live with chronic pain and fatigue.  Yes, I am sensitive to sunlight.  Yes, I deal with the impact of this illness on a daily basis.  But, so does my family and those that love me.  Over the past few years, my children and husband have watched me battle this illness. It has affected my mood, my ability to join in on activities I once enjoyed and with the almost dying incident, their sense of security that mom will always be there for them.  While they enjoyed getting to the front of the line at Disney World, I know they would trade those little perks to have their healthy mom back.
  5. Mainly women develop lupus.  90% of people living with lupus are female.  A large majority of those women are not Caucasian.  For some reason, this disease favors women of color {although it didn’t discriminate when it chose me}. Many women that live with lupus report worsening of their symptoms the week before their menstrual cycle.  I hope that researchers continue to focus on this link.
  6. Lupus makes me red in the face.  Literally.  I have a tell-tale sign of lupus on my face called a butterfly rash.  It is a red, raised rash across my cheeks and the bridge of my nose {and some on my forehead}.  Thankfully, make-up masks most of it but if you have ever noticed that I “look flushed” or asked me if I “got some sun”, you were likely noting my butterfly rash.
  7. Lupus is expensive.  My husband and I have written off more than $35,000 in out of pocket {meaning we wrote the checks!} worth of medical expenses since 2007 {which was the year I started having strange symptoms and searching for a diagnosis}.  I am eternally grateful for health insurance and don’t even want to imagine the state of our finances if we didn’t have medical insurance.
  8. Lupus can be depressing.  About 50% of people diagnosed with lupus will develop neuropsychiatric symptoms including depression. Myself included.  I don’t know if it’s because there is a link between depression and lupus or because living with the symptoms can be downright depressing, but I know that depression is just another part of my lupus puzzle.
  9. There are things I wish you wouldn’t say to me about lupus.  I would rather not hear how your loved one died from complications of lupus {yes, that has been the reaction from some when told of my diagnosis}.  I would rather not hear how your friend was cured by a particular diet or supplement or that I just need to stay active to fend off flares.  Please trust that I have dependable, educated professionals invested in my health and I have researched treatment options extensively and am making the choices I am most comfortable with for my health and wellbeing.
  10. There are things I don’t mind if you say to me about lupus.  Some people living with chronic illness don’t like to hear “but you don’t look sick”.  I actually take that sentiment as a compliment.  I work very hard to not “look sick” so it’s encouraging to me when someone notices.
  11. I’m not always honest about how lupus is affecting me.  I’m going to be real with you, friends.  I am not going to answer your generic “How are you today” with an inventory of my symptoms and a map of where my pain is.  It’s not that I am trying to keep things from you or don’t want to be open about my condition but that I don’t want my relationships defined by my illness.  If I need to reschedule a dinner date, I trust you will understand.  If I decline to go on the camping trip, I pray you won’t be offended.  If I need your help, I have learned to ask for it.  I am incredible blessed by the people God has placed in my life.  I could tell you heartwarming stories of how my friends have been there for me in some of my most difficult health moments.  Those same friends will also tell you that they rarely know when I’m having a bad “lupie” day or struggling with a new symptom.  I will tell you if I need you to know but lupus will not come up in our daily conversation.  Which leads me to the last thing I want you to know….
  12. I have lupus but lupus doesn’t have me.  I am a 34 year old woman who often feels like she has the body of an 85 year old.  But, my life is full! Full of joy, full of love, full of opportunity, full of faith, full of friends, full of life.  I will not and have not let lupus stop me from following my dreams, loving my family, cultivating friendships and most importantly, bringing glory to my God.  I live a life full of hope and gratitude despite the hard realities of living with lupus.

I hope this has been informative.  I also hope that you will join me in praying for a cure for SLE so that one day women across the world can live free of this disease.

Do you know someone with lupus?

 

Comments

  1. Chris Freitas says:

    Hi Melissa, I read your story about lupus and want you to know that it really hit home for me. I am not woman but I have Lupus and have lived painfully with it since 1998. It has ruined my life although I continue to push on suffering all the symptoms you have and a few more. This hideous disease is so misunderstood and people just don’t understand “well you don’t look unhealthy to me”. I lost a career of 40 years which financed an upper middle income lifestyle. I lost both my homes and my savings. I los

  2. Elizabeth says:

    Thank you for your insights. I also have Lupus (diagnosed 6 yrs ago) and currently going through a resurgence of the worst aspects of it. I appreciated the affirmation of my condition (s) and more importantly, the inspiration. Item 11 reminds me NOT to offer details – people really don’t want them, and in fact, are often awkward with them – and truthfully, th ey really don’t understand anyhow. Also, item 12 – I can’t let Lupus get me – especially right now when it is so ferociously beating me up. Thank you.

  3. Hi Melissa,
    My name is Venus, reading some of your stories remind me alot of my own. I was just diagnoist with ANA. As a woman of faith I know I shouldnt be speaking this upon mylife, but I feel that I have Lupus, Even before I went in to get checked I was doing research on my symptom’s & it lead me to Lupus, I just got my results last Monday. I have been a mess, I can’t sleep, just thinking of whats going to happen to my only child if something was to happen to me. I have been feeling these symptoms for yrs, I just never got checked. Now that things have gotten worse, I have lost the strength in my hands, half of my hands turn purple. hair loss.joint pain, headaches, wieghtloss, when you say you feel like a 80 yr old lady I truly know what you mean. I just moved to the 3rd floor, & I have to take short breaks to get up there, my hips feel like they cramp up, & I am out of breath. I just pray if I do have it that it hasnt done too much damage to me. I am really scared, I dont know how to share this info with friends & family. I told my mom & siblings but I havent told my 16yr old son yet. My 1st appointment with the Rheumatologist is in Apirl. It feels like torture. Well I wanted to thank you for sharing your story. I pray your healing, In the Mighty Name of Jesus!!
    <3 Venus

  4. hello there i was diagnosed in 2012 with lupus been going for tests on and off for 2years now. I went for a kidney biopsy in January 2013 and was told i dont have lupus. I went back January 2014 to my nephrologist for more bloodtests where upon my dr informed me that i still have lupus. what confusion this has caused in my life. i am currently only using plaquine for treatment. i started with all the symptoms in the beginning flares in the face swollen joints swollen feet in constant pain from head to toes couldnt sleep for days,so i have been through all those agony symptoms also was anemic had protein and white blood cells detected. its been a journey, my husband was a great strength and pillar through those hard times, my family stood by me and supported me through those awfull times. today i feel much better can do things by myself to a limit is pain free most days i am very forgetfull i am working on that still, sleep comes easily now,but when i get woken up for no reason i stay awake. i believe God plays a major role in me been healed and the use of plaquine is helping to supress the symptoms.

  5. Christina Mace says:

    I am thankful for your openness and the fact that God is your strength. I too have lupus and I am not inthe same place as you have made it too. When I was first diagnosed, it was a relief because I finally had answers, but I also thought about my aunt who had passed away from her lupus and fear set in. I still felt like I was a strong woman and that lupus woild not define me. Well, a year into this challenge I am fighting to survive emotionally and my body just fells like it wants to give up. I know my God is in control, but believing and felling are two differdent things. Please continue to pray, for everyone with this horrible disease and thanks again for your openness.

  6. Having symptoms, ANA came back high. Seeing a rheumatologist on the 27th. Thanks for your inspiration. I’m beyond depressed.

  7. This was the best story I have read so far. I felt like I was reading my life with Lupus. After I had my second child I noticed I was tired all the time. I went to a few doctors and all my blood work was fine. My family called me a hypochondriac. I knew something was wrong but I couldn’t find it with any of the doctors I went to. Then the doctors thought I was depressed I was not depressed I was as happy as I could be except for I was tired of being tired all the time. I would have to take a nap when we went on vacation during the middle of the day. Finally 10 years later a doctor sent me to a rheumatologist and I almost didn’t go because I couldn’t understand while I was going to An atharitis doctor. But I went and my ANA came back 1:648 and normal is 1:80 if I can remember correctly. Finally a doctor found something. My hands and feet are always cold , I’m now on thyroid medicen that makes me sick on my stomach. I have heartburn and acid reflux so bad. But I can live with all that and the joint pains but the tiredness was taking over my life. I had been researching for years medicine to help chronic fatigue and tiredness.. The doctor tried me on Provigil and new vigil for narcolepsy patients which made me very sick. Finally put me on Vyvanse 20 mg. That helped me a lot. It’s for ADHD or ADD people but also helps with other things. It really helped my tiredness a lot. I’ve been taking it for almost two years now but gradually increased the milligrams to 50 mg . I still have days where I can’t feel it working as well as other days. And u can not drink Orange juice when taking it. It dilutes the effect. But it has been a major help for me and hopefully if anyone else has fatigue like me try Vyvanse. It’s not addictive like Adderall but I do know if I skip a day without taking Vyvanse I am not able to get out of bed . I hope this helps. God Bless you all.

  8. Hi thank you for your story. I have suffered many things you have mentioned but still for a while since being diagnosed in 1999 I have felt that compared to what I had heard of other people suffering that I was pretty lucky and that my lupus was not that bad. Recently however some changes have occurred and I have become a bit scared. I have more skin activity which I am not sure or convinced …. I don’t know anymore … when something is the lupus or something else. I am getting very scared and depressed and I’m trying to stay strong. I have started reaching out to others with lupus for support now. My family loves me but I think sometimes they do not get how this disease makes me feel and what it is really doing to me, especially since I also try very hard not to complain. I feel scared and alone right now. So thank you very much for your story.

  9. Nicky Jones says:

    This has been a touching article for me.I have been officially diagnosed with lupus since 2006.It has been a roller coaster n near death experience for me.its through God’s grace I had a daughter I am in constant fear I live as I hope to see her grow.it has affected my heart and I now wear a pacemaker.the pains are no more but when I over work my body literally shuts down and I have the most horrific death like sensation.But I am still hanging on and believe in God for my ultimate healing.its a fight that we must try to win.We just have to try and keep track of our symptoms and know when to take a breather and try to rejuvinate a bit at times.Just hoping they find a cure.

  10. I came across this article today. Such a good read for people to understand what a person with SLE goes through. I was diagnosed June 2013, after a year of thinking I was literally crazy! I had to chuckle about the part of your family getting to go to the front of the line at Disney World, as I have recently caved and was issued a handicap pass. I tell my family this is their reward for dealing with me and understanding I can’t do what I used too. It’s a hard pill to swallow, but I know I am going through this for a reason. I do believe that one day, I will be completely healed!!!

Speak Your Mind

*

CommentLuv badge

Skip to toolbar