During this period of spreading breastfeeding awareness, I want to share how breastfeeding while experiencing chronic illness has affected me; I guess you could say I’m not the average mom. Depending on who I asked, I was told that breastfeeding was either easy or difficult. When I gave birth to my first daughter on the 20th of June 2017, I thought I’d take to breastfeeding with ease since I had watched a ton of videos and attended breastfeeding classes. This, however, was not the case.
After my daughter R was born, I struggled with getting her to latch on and instantly felt like a failure. I decided to consult a lactation consultant to come in because I did not want to give up. When she came in, we had to discuss what was going on. We discussed that R was a “lazy baby” and sucked on her wrist throughout my whole pregnancy. We had to used SNS (supplemental nursing system) and a nipple shield to convince her to latch. I cried many times throughout my stay because I had to use the SNS twice with the nipple shield and some formula just on me to get her to taste it another time. I remember feeling bone tired while R was nursing for hours at a time in the hospital, with the nurses coming in and badgering me to feed her more often. During those times it had felt like I had just finished nursing her, yet they would come in and tell me I wasn’t nursing her often enough.
My Experience Adjusting to Breastfeeding
During the first month at home, I was glad it was my summer break and that I did not have to stress about going back to work. I cried many times during the day and night because my fibromyalgia was flaring up and it hurt for R to be nursing for long periods of time. I struggled mentally at this time because of my PPD/A and I was struggling to build a relationship with my daughter. I never have experienced such pure and utter exhaustion like I did with struggling to breastfeed, experiencing a loss of sleep, and my chronic illnesses flaring up. I wanted to give up many times, and hearing some others just tell me to use bottles so that they could feed R didn’t help with my mental state. I also had people tell me not to breastfeed in public and to isolate myself whenever I needed to feed her. I found it was hard to carry her when I needed to walk with my service dog and just trying to find a place to nurse without people tripping on the dog or walking on me was difficult.
My husband has been a huge support,
along with my parents, for both our girls because they will take my girls and
let me sleep in in the morning. In the newborn stage (0-3 months) my girls woke
up often to feed, but it happened around the same time throughout the
night. No longer experiencing this interruption of sleep predictability helped
me to cope and not be as grumpy or frustrated with my sleep being
The Stigma that Surrounds Breastfeeding
Breastfeeding can be difficult for anyone, not just people with chronic illnesses. There is a stigma with breastfeeding that goes around along with a lot of misinformation. Unfortunately, there is a huge push for anyone who is breastfeeding to go and nurse in another room, bathroom, changing room, etc… There seems to be a huge push for formula and bottle feeding because it’s “more convenient” and allows others to feed the baby to “give mom a break”. There are even suggestions to just pump and bottle feed, but that is not an easier option because every time that the baby feeds, mom still needs to get up and pump, then take care of the pump parts and put the milk in storage. There’s a lot of work no matter what, and it can be a struggle.
Medication and Breastfeeding
Having chronic illnesses and making the choice to breastfeed will limit your options concerning medication. Even though you are not pregnant, you still have some limitations or weird changes of limitations on medication. After having my second daughter W, my body went into a flare with lupus and fibromyalgia. I discussed with my doctor what we could do, and he put me on a new medication that would not affect my daughter since I am still breastfeeding. I had to go back to my doctor this past week because the medication was working, but not at a therapeutic level.
He decided to up my medication again by 0.5mg (small increases as needed because everybody is different) and then discussed that I am still inflamed in my ears but the fluid in my inner ears was finally gone. We had initially wanted to put me on gabapentin, however, after my doctor went and looked up to see if it would be safe, he and I decided that we could not take the risk. The medication I was put on instead was one that claimed a minimal amount goes through the milk to the baby. We would have to monitor W as well as myself to make sure no harm or side effects were occurring.
It is a “safe” medication, but in the “if the benefits outweigh the risks” manner. I was slightly devastated because my pain is coming to a point where I am losing more sleep than I already was to begin with. Pain can also affect your libido, patience level, etc… We have now gotten to where we need to focus on herbs if possible, to help with my nerves since most medications for pain are not recommended for long periods of time while breastfeeding. If my pain gets worse or even more unmanageable then we will revisit and evaluate what we need to do as our next step.
For now, I am going to stick with breastfeeding because it is beneficial to my daughter. My daughters both do not respond very well to formula and I would have to special order one from out of the country, which my insurance will not cover. When I consider the cost, benefit and time (easier/quicker to breastfeed than prepare a bottle), I am keeping everything in mind and staying in contact with my doctor to make sure I am not sacrificing too much of my physical, mental, emotional, and spiritual health. My experience is going to be different from anyone else’s experience, and I am always a “fed is best” advocate. I will never advise someone to compromise their own health when their child needs their parents alive more than anything.
Systemic Lupus Erythematosus (SLE) is a condition that nearly 1.5 Million Americans live with but very few people actually know about. SLE is a Chronic (long-term) autoimmune disease that causes the body’s immune system to become overactive and attack the body’s normal, healthy tissue. It can cause inflammation, swelling, and fatigue, as well as damage to the joints, skin, kidneys, blood, heart, and lungs. Just like any other chronic condition, there are multiple options as far as methods of treatment. However, unlike most common conditions, there have been very few new treatment options approved for SLE in recent history.
Before we look at my story and what has worked for me over the years, let me give you a little backstory on me. When I was diagnosed in 2012, I had been working as a Registered Nurse for 5 years on an ICU step down unit. I had just finished my Bachelors’ degree in nursing the previous December and was 8 weeks into my Masters in the Nursing Education program. So I was no novice when it came to current education and my own health. That being said, Lupus was not something I was all that familiar with, as it wasn’t something I learned much about in school or had come across often in my career. But I did extensive research and learned everything I possibly could once it was brought up as a possibility.
My Journey Towards a Diagnosis
I was officially diagnosed with Systemic Lupus Erythematosus (SLE) in the summer of 2012 after a full 7 months of being very ill with no firm diagnosis. In February of that year, I came down with what started like my typical case of bronchitis, which I get at least two or three times every single winter. However, this turned out to be very anything but typical for me. I couldn’t seem to shake the symptoms this time, despite me having taken several rounds of antibiotics and steroids. I was then admitted to the hospital for five days. I got IV antibiotics and steroids while they ran just about every possible test, but nothing seemed to work and all the tests came back negative.
By the time I was discharged I had no more of a diagnosis than I did when I went in. I continued to be VERY short of breath with minimal exertion, and the cough was exhausting. As 2012 continued I developed more issues beyond the respiratory issues I started the year with. My feet started swelling and became so painful I could hardly walk, and I was always tired. No, that’s not completely accurate; I was EXHAUSTED constantly no matter how much I slept. I always felt like my brain was foggy and I would often forget my train of thought mid-sentence. My entire body ached. Finally, in the late spring of 2012, my doctor decided to run more blood work. She decided to have a whole autoimmune panel done on a fluke. She never expected them to be positive because they had been negative just a few months prior. Much to both her surprise, and mine, they all came back positive.
In late Summer of 2012, I was finally diagnosed with Systemic Lupus Erythematosus along with a long list of other things which I won’t currently talk about. This was after several months of telling the doctor that there was definitely something going on. When I first saw this Doctor in May, she said I probably had something similar to Lupus, but that it wasn’t Lupus and there wasn’t really anything she could do to treat it. So between May and August, I journaled every single sign and symptom and took pictures of anything that could be seen by the naked eye. I knew my body and after doing extensive research on Lupus I was positive that this is what I had. During that time as I was experiencing a severe flare, I also took the time to look back at my medical history going all the way back to the late 1990s. I did this to see if I could correlate any problems of the problems I had been dealing with at that time to the new symptoms.
As I looked back, it all started to fall into place and make sense. In the late 90s, early 2000s, while I was in high-school I was diagnosed with Mono. Which isn’t that abnormal for a high-school student. What is abnormal is the fact that it lasted for SIX months, at least that is what I was told. Looking back with the knowledge I have now, I feel confident saying that what they called everlasting Mono was actually, in fact, my first of many BIG Lupus flares. For those of you who are unfamiliar with the link between Mono and Lupus, research has shown that a protein made by the Epstein-Barr (Mono) virus binds to areas of the human genome linked to an increased risk of certain autoimmune diseases. Lupus is one of those autoimmune diseases.
Finally, after documenting everything and showing the doctor all the information that I had gathered over the last several months, I was diagnosed with SLE. At first, I was started on Plaquenil only. Plaquenil is the OLDEST, tried and true, Lupus treatment available. It was approved by the FDA for treatment of Lupus in 1955. It is supposed to relieve some lupus symptoms such as fatigue, rashes, joint pain, and mouth sores. I have remained on this medication since I was diagnosed. But, if I am being totally honest, I really don’t know that it does much for me. however much like most of my other Lupie (a person with Lupus) friends, I continue to take it just in case.
After a few months of taking Plaquenil alone and no improvement of my symptoms, I was started on Imuran. Imuran is an immunosuppressant which alters the activity of the body’s immune system so that it will no longer attack the body. This medication is traditionally used as an anti-rejection medication for individuals who have had organ transplants. With Imuran comes the possibility of developing issues with your blood, such as decreases in your red and white blood cells. This means people on it require frequent lab draws. I was on Imuran for about 8 months and had no improvement of my symptoms. I continued to be exhausted all the time and hurt all over the place, while my labs were not improving.
My Experience Taking Prednisone
While we were trying to find the correct medication, I was taking Prednisone. It was a corticosteroid to help keep me stable until we found a treatment that would work, and that I could stay on long term. Prednisone is not something that anyone should be on long term if they can help it. In many chronic illness communities, prednisone is referred to as the devils’ tic-tacs. Prednisone is a fabulous drug in the sense that it can make you feel better and treat many issues quickly. But it also has a whole host of negative side effects too. It can cause weight gain, insomnia, hot flashes, and insatiable hunger just to name a few. Sadly, prednisone is one of the most effective medications for decreasing swelling, warmth, tenderness, pain and inflammation caused by Lupus.
For me, however, it did more harm than good. I was on such a high dose of prednisone for such a long time that it impacted my adrenal glands. Our adrenal glands make a steroid called cortisol that we need to help control our blood pressure and heart rate, among other vital body functions. In my case, the high doses of synthetic cortisone, aka prednisone, caused my adrenal glands to no longer produce cortisol. This threw me into adrenal insufficiency and caused me major issues. On a daily basis, it would be nothing for my blood pressure to stay under 90/50 and drop under 70/30 when I would stand up. This would cause me to be extremely nauseated, to the point where I would vomit and sometimes pass out. In order to treat this, I had to take supplemental cortisone to get my body to learn to make it again.
It’s taken three years, but my adrenal glands have started to work again. I can now no longer take prednisone for any length of time without risking major issues. Even though my adrenal glands are working better now, any time I get sick, have any big flare or have any kind of procedure/surgery I have to take extra cortisone as a stress dose. Otherwise, I risk having major issues as I have mentioned above.
My Experience Taking Methotrexate (Mtx)
After taking Imuran for a number of months with no improvement, my Doctor decided to try me on Methotrexate (Mtx). Methotrexate is a chemotherapy agent that acts as an immunosuppressant and is in a category called Disease-modifying antirheumatic drugs (DMARDs). Mtx is actually the Gold Standard for treating Rheumatoid Arthritis (RA) and was approved by the FDA for treatment of RA and Lupus in the late 1980s. Mtx is used in Lupus to treat the pain and swelling of the arthritis that can accompany lupus.
DMARDs not only reduce this pain and swelling, but they may also be able to decrease long term damage to your joints. I took this for a while as a pill, which seemed to be the first medication that I had tried that actually seemed to help. The only drawback for me was the nausea. It was INTENSE. But we were able to change to the injectable form and the nausea decreased dramatically. The Mtx and the Plaquenil worked well for a while. Until they didn’t.
My Experience Taking Benlysta, My Saving Grace!
A little shy of two years after my diagnosis, in the spring of 2014, I felt like the Plaquenil and Mtx were no longer working. My labs were okay, but I still felt awful ALL the time. I might have had a handful of good days a month, but that was it. Finally, I told my Rheumatologist that something had to change. I told her that I couldn’t keep going the way I was. That is when she first mentioned Benlysta. Benlysta was still relatively new at this point, as it had only been approved for use by the FDA for about three years (Approved in 2011). Benlysta was the first new medicine to be approved for the treatment of adults with SLE who are receiving other treatment in FIFTY YEARS!!! It was a totally new way of thinking for the treatment of Lupus.
Benlysta is a Monoclonal Antibody, a biological medication, which works by calming down the hyperactive immune system of lupus by inhibiting a protein called ‘B lymphocyte stimulator (BLyS)’ which is believed to increase inflammatory reactions that attack and damage the body’s own healthy tissues. Basically, in layman’s terms, the medication knocks out the immune system so it can no longer attack all the things it shouldn’t be attacking, like the joints, the heart, and the brain. When it was first approved by the FDA in 2011 it was only available for adults, and only available to be given intravenously. Since then that has changed. In 2018 the FDA approved it to be given in an Injectable form. And just last month (April 2019) it was approved for the treatment of Lupus in everyone over the age of five.
Benlysta has been my saving grace and a doubled edged sword all in one. It has given me my life back. When I am on track and able to get it every 28 days like prescribed I feel my best. It gives me 2 ½- 3 good weeks a month (sometimes a little more, sometimes a little less). Whereas when I was on previous medications, I would only have a handful of good days a month. ‘Why is it a double-edged sword’ you may be asking? Well, that’s simple! It gives me my life back but also makes me so much more susceptible to infection. Since it knocks out my immune system so it will stop attacking my body, it also knocks out the immune system that would fight off infection. So, during the winter I am essentially home-bound because I pick up every little bug that comes my way.
Everyone Is Different
Each person’s experience with Lupus is going to be different and everyone will respond to medications differently. Some people may never need Benlysta, and others may need the bigger guns like Cytoxan, which I didn’t mention because I have not had needed to try that. Sadly, no doctor can just look at a person’s labs or their physical exam and know what medication or medications will work for them. It’s honestly trial and error for most people. For right now the trio of Benlysta, Methotrexate, and Plaquenil are what is working for me. But that could change tomorrow.
Lupus is ever changing, as is the treatment. There are currently several drugs for lupus in the trial phases, so we can only hope that they will make it through the process and be available for us in the future. My advice to anyone newly diagnosed or anyone who just isn’t doing well on their current regimen is to do your research. The best thing you can do for yourself is to research and be your own advocate. Find out what’s out there and what’s available and talk to your doctor about what you think might be best for you. Because, in the long run you are the only person who knows what is best for you and your health.
Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.
Living with a chronic illness of any kind can truly impact all aspects of one’s life and make many things difficult. Poor health can put a strain on everything from your job and work life, as well as the relationships that you hold most dear. Over the years I’ve found that one of the hardest parts of living with a chronic condition is keeping your relationships healthy. While this may seem odd to those who haven’t walked this path, sadly, it’s very much an issue.
Until you are sick, you don’t see how much a strain can be put on your relationships by a chronic illness. When you have to routinely cancel plans or spend long periods at home in bed, it can be incredibly hard for those in your life to understand. This especially occurs when you have an ‘invisible’ condition such as Lupus or Multiple Sclerosis.
There are many things that those who deal with some kind of chronic illness (myself included) wish our able-bodied counterparts could understand. In this article, we are going to look at 5 things we wish our friends and family understood about living with a chronic illness.
I DO NOT like cancelling plans
Contrary to many people’s beliefs, most of the time we don’t like cancelling plans. Sure, there are times when we just don’t want to do something or go anywhere, but that can be the case for anyone, NOT just those who are chronically ill. Most of the time we would much rather be out and about doing things and being around people than be stuck at home. But sadly, sometimes that is not an option and we have to cancel plans. It is often easier to assume the worse than it is to find out what is really going on. People can often draw their own conclusions instead of asking why people with chronic illness are doing things like cancelling plans. I have found that in order to help those around us understand what it’s like to live with a chronic condition, we have to be willing and ready to be open about our health. We also have to be willing to work with those closest to us to help them understand what it’s like on our side of the table.
My health does not define me
My health does not define me – While our health may impact almost every aspect of our life, it is not all that we are. For instance, I am not just Amber who has Lupus. I am so much more than that. I do have lupus, but my illness is not what solely defines me. I am Amber with Lupus, who is a daughter, a sister, a friend, a patient advocate, and so much more. So please remember we are so much more than our health and should never be defined by it.
Just because I look okay, does not mean I feel okay!
It is easy to put on a brave face and to cover how badly I feel with makeup, for a short time. Outwardly I may look put together, but what you wouldn’t know is that it took hours to get ready because I had to take a break every few minutes. Living with an invisible illness is tricky, people can never tell I feel based on my outward appearance. So I wish people would please just ask, instead of assuming.
Please don’t compare my illness or symptoms to another person’s
Just like no two people are the same, no two cases of a chronic illness are the same. You may know three people who all have Lupus, but more likely than not they don’t have the same issues. Please don’t compare me to anyone else you know with my condition. You would never compare two Americans just because they are American, so please don’t compare the chronically ill. Also, if you know someone who died from my condition, I don’t need to know!!!
Just because I felt good yesterday does not mean I will feel good today
Many people who are not chronically ill do not understand that in order to get out of the house, we have to scrape together energy and will likely pay for it tomorrow. Please don’t assume that just because I was out for a girl’s day yesterday that I will feel like going to brunch today. Chances are that if I really pushed myself yesterday, I will be paying for it today and quite possibly for several days to come. Please don’t assume that I am being untruthful when I say I am in bed today, just because you saw me when I was out yesterday.
Many people have a hard time understanding chronic illnesses since the majority of conditions that are chronic are invisible, meaning they can’t be seen by the naked eye. That alone can cause issues in relationships because one cannot see what the other is dealing with on a daily basis. The pain or the shortness of breath can’t be seen and therefore often can’t be understood. This is why it is imperative that we, as the chronically ill, provide education to those around us. It is imperative that we explain to those closest to us what a good day for us is as well as a bad day. If we never explain why we are always cancelling plans, people may eventually start to assume it’s due to something they are doing, rather than the fact that we just don’t feel like going out. It is also important that we let others help us remember, as noted in number two above, that we are not defined by our illness. While we want others to remember this, we also need to remember this for ourselves.
In closing, we can’t expect others to understand the things discussed above if we don’t ever tell them. If we never share our health with those around us, we can never expect people to fully understand. It’s important to try to ensure happy relationships with friends, which requires communication and understanding.
About the Author
Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.
A little back story, I was diagnosed with 3 chronic illnesses (rheumatoid arthritis, fibromyalgia, and lupus) when I was 17 and then after a car accident, they were in back to back flares and fighting which day they would “one-up” each other.
I tried to run off my husband by scaring him away by describing in detail the “horrors” of being a caretaker to me would be. He stuck it through with me and we got married August 8, 2014. Soon after, he had asked me to talk to my doctors about the possibility of getting pregnant. After making multiple appointments and talking with every doctor and specialist, we got the green light to actually try to get pregnant.
The start of my guilt of being a parent kicked in and never left.
I struggled with accepting that I could get pregnant after being told no for so many years. I wanted to try though since my husband was so excited. On February 14, 2015, we had our first miscarriage. The start of it as a telltale sign that it was going to happen was that my lupus flared up and I just could tell something wasn’t right.
The guilt set in fast and hard that my child didn’t survive because of my body, because of my chronically ill body. I spiraled into a depression where everything made me cry. Cat crossing the street, tears, a child laughing on the tv show, tears, husband made dinner like he did every night, tears. My lupus flare ended when I had a second miscarriage on November 18, 2015; the day before my husband’s birthday and the day I was going to surprise him with the news. I didn’t want to keep trying after that since my emotions and guilt just kept getting worse.
The summer of 2016, I was looking at puppies as a prospective service dog to replace my service dog since she was getting old. I picked up the puppy in September, and a few short weeks later I found out I was pregnant again. I was so afraid to tell my husband, let alone get excited for any check up because of being afraid. Fast forward to June 20, 2017, I had our adorable daughter, I will call “R”, at 10:16 am. My husband was ecstatic and I was reserved and quiet. I struggled with holding her and bonding because I felt guilty.
I felt guilty for a lot of things
1. R survived, but my body failed me twice and I couldn’t stop thinking about the two I lost and what they would have been like.
2. I kept thinking about how R’s life will be different because I, her mom, is disabled.
3. I couldn’t stop thinking about how much of a burden it was going to be on my husband because my chronic illnesses/disabilities are unpredictable.
4. Feeling like a failure as a mom already because I cannot be a normal parent.
It took about 6 weeks after R was born before I was willing to start trying to bond with her. I had the guilt from that because I knew that the early stages of bonding were beneficial. On top of that, I was returning to work towards the last week of August.
I struggled with every milestone she made, whether it was early or not, and then questioned whether it was because I was disabled that she would develop them early. I struggled when she started playing and growing up “too fast” in my mind because I knew that my chronic illnesses were causing me to miss some of what she was learning and growing.
A happy surprise!
I got pregnant with our second daughter around R’s first birthday, this one was a surprise to us, but we knew we would love her. During my pregnancy, I had the guilt of missing milestones for R because of me being extra tired and exhausted. It hurt to tell R over and over again that “mommy is struggling today and can’t hold you/play with you/read to you”. When I was getting closer to having our second daughter I cried over having to leave R with my dad while my husband, my mom, and I were in the hospital. I was taking away her playmate (my new service dog) and her regular babysitter (my mom).
My guilt was at an all-time high after I gave birth to our second daughter, February 14, 2019, I’ll call her “W”. I knew I was turning R’s world upside down and “forcing” her to have to learn what all was going on and have to share her precious mommy time with another one. Trying to split time evenly is hard, especially since my rheumatoid arthritis flared up right after I gave birth.
As I have been slowly recovering from giving birth, I have been slowly getting accustomed to two children, and having to learn to ask for help a lot more. This guilt will continue throughout my daughters growing up and I will have to cope with it.
I will need to breathe through their difficult questions as they grow up and realize just how different their mom is compared to their friend’s parents. I will also have to deal with the guilt that I am adding/putting more stress upon my husband with having to help raise our daughters and having to step into the caregiver role from time to time and more often as my chronic illnesses/disabilities progress.
I have realized that my guilt will come in waves and I will have to deal with them as they come. It is just like the stages of grieving that I have gone through and continue to go through as my chronic illnesses/disabilities progress. It is hard to reach out and talk to others about life, but I have learned to find someone to talk to that I can trust.
Now it’s time for me to spend a little time with W (only 12 days old) and pray that R (20 months old) doesn’t wake up calling me.
remember sitting in the cold, sterile room waiting for the doctor. I had gone
through what felt like every scan, test, or exam under the sun. The doctor had
all the results. The only thing left was a diagnosis, a treatment plan, a magic
pill – anything other than throwing
his hands in the air and passing me off to someone else like all of my previous
doctors had done.
he finally came in, he said, “You have a lupus-like autoimmune disease.”
As you can imagine, confusion doesn’t justify how I felt in that moment. What does that mean? Is this a diagnosis? Do I have lupus or not? And what the hell is a “lupus-like autoimmune disease”?
doctor was supposed to connect the dots and put the puzzle together. Over 15
doctors, 10 different unrelated diagnoses, and countless meds and treatments,
and now a “lupus-like autoimmune disease”? WHAT!?!?
Meet Lupus: The Great
Lupus, or systemic lupus erythematous (SLE), is a chronic autoimmune disease that affects over 1.5 million Americans. An autoimmune disease means your immune system malfunctions and attacks your healthy tissues as if they are a dangerous virus or bacteria. As a result, autoantibodies are created that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage to various parts of the body. Lupus can take many different forms and can attack any part of your body, most commonly skin, joints, heart, lungs, blood, brain, or kidneys.
not commonly known about this disease is that no single test can diagnose
lupus. Symptoms vary widely from patient to patient, making it very hard for a
doctor to recognize. It is known as the “great imitator” because its symptoms
mimic so many other illnesses, which leads to misdiagnoses and makes lupus
extremely challenging to diagnose. The symptoms of lupus vary widely and come
and go unpredictably.
of lupus shared with several systemic autoimmune diseases (connective tissue
Muscle and joint pain
Weight loss or gain
Low white blood cell count
Antinuclear antibody (ANA)
tests cannot give a definitive diagnosis because of the many limitations of the
disease, including the lack of a lab test to determine whether a person has
lupus. In addition to various symptoms of lupus mimicking other conditions, the
test results that suggest lupus can be due to a number of other illnesses and
conditions. To make diagnosing lupus even more complicated, a test result may
be positive one time and negative another time or produce different results altogether
depending on the lab it’s tested in.
Diagnosis of Last
determine if you have lupus, your doctor needs to look at the entire picture,
including medical history, symptoms and test results. Diagnosis is usually
based on a detailed clinical examination and adapted laboratory tests.
is commonly diagnosed by process of elimination. Many of the diseases lupus
mimics can be diagnosed by a single
lab test or combination of tests and characteristics. Therefore, once all other
conditions have been exhausted, lupus is diagnosed as a last resort.
to Dr. Donald Thomas, a physician who specializes in lupus, the only 100%
accurate and quick way to diagnosis lupus is through a kidney biopsy if someone
has kidney inflammation or a skin biopsy if someone has a specific lupus rash.
Otherwise, physicians are stuck using the criteria listed below.
have to wait until everything comes together perfectly before lupus can be
diagnosed.” – Dr. Thomas
to the American College of Rheumatology, at least 4 of the 11 criteria of lupus
need to be present for lupus to be diagnosed:
Malar rash – a butterfly shaped rash across
cheeks and nose
Skin rash – raised red patches
Photosensitivity – unusually strong reaction to
sun light, causing a rash or flare
Mouth or nose ulcers – usually painless
Nonerosive arthritis – inflammation in two or
Cardio-pulmonary involvement – inflammation of
the heart lining and/or lungs
Neurologic disorder – seizures and/or psychosis
Kidney disorder – increased protein or clumps
of red cells in urine
Blood disorder – anemia caused by damaged red
cells, low white cells or low platelet count
Immunological disorder – when your immune
system attacks healthy cells
Antinuclear antibodies (ANA) – positive blood
test not induced by drugs
there is no known cure for lupus, there are several effective treatment options
available. Traditional medications approved to treat lupus by the U.S. Food and
Drug Administration (FDA) includes corticosteroids such as prednisone or
hydrocortisone, antimalarials such as hydroxychloroquine (Plaquenil), and acthar
(repository corticotrophin injection). There are many other medications used
“off label” to treat the symptoms of lupus such as non-steroidal
anti-inflammatory drugs (NSAIDs), immune modulating drugs (immunosuppressive)
and anticoagulants. Many of these drugs suppress inflammation and treat some of
the symptoms of lupus, but consequently result in short-term side effects
including swelling and weight-gain, and long-term side effects including
weakened or damaged bones, high blood pressure, stretch marks on the skin,
damage to the arteries, diabetes, infections, and cataracts.
are additional complementary or supplemental alternative options for lupus.
Some of the recommended supplements include fish oil, vitamin A, vitamin D,
vitamin E, DHEA, turmeric, boswellia extract, ginkgo biloba, pine bark and
evening primrose oil. The alternative therapies and treatments recommended for
lupus include diet modifications, therapeutic massage, chiropractic care,
acupuncture, yoga, meditation, herbal medicine, hydrotherapy, mind/body
medicine and traditional Chinese medicine.
As I Look Back
it’s a confident doctor saying you have lupus or a shaky “lupus-like autoimmune
disease” diagnosis from a doctor, it can seem utterly overwhelming.
biggest thing I learned from my diagnosis experience is that the actual
diagnosis isn’t necessarily the most important thing. Instead of searching for
answers, your energy can be more effective focused on finding treatments that
work for you and can alleviate your symptoms.
I were to go back 2 years ago to that initial diagnosis, I would give myself
the following advice: make a list of all of your symptoms starting with what you perceive to be the most severe,
concerning, or life-altering, and start there. Take it one symptom at a time
and don’t let yourself get bogged down by the big picture.
Written by Erica Joy.
Erica Joy is a twenty something chronic illness & mental health blogger and advocate. She is from NYC and loves photography, writing, and traveling. On her blog, HopenlyMe, she shares her experiences and gives advice and tips on living with a chronic or mental illness. Erica created her blog hoping to help others aspire to a life that brings them joy. She is battling lupus, fibromyalgia, IBS, pelvic floor dysfunction, Hashitoxicosis, depression and anxiety.
I live in Florida, the Sunshine State, where it just so happens that the sun has become my worst enemy. At the age of twenty-six, I was diagnosed with systemic lupus erythematosus (SLE). It’s been a roller coaster experience.
It remains one of the hardest things I’ve ever been through. My symptoms began around the end of October 2015, when one day I randomly woke up with a big rash on my face. I would go to work like everything was normal and everyone would ask, but I just kept saying it was allergies. Because that’s what we all thought. Allergies.
One Sunday morning I’ll never forget, I went to work like I normally would. But this time, I started feeling so bad and felt my face slowly swell up. I called my mom and sent her a picture. She said, “You have to go to the hospital.” And so I did. The first time they put me on an IV and allergy meds. After that visit, I had to see an allergist. So I went and she did a million and one painful and uncomfortable allergy tests. She told me, “You have allergies, but what you are going through right now isn’t an allergic reaction.” She suggested I see a rheumatologist. But before I could see the rheumatologist, I ended up in the hospital again because my face swelled up a second time.
My Harsh Reality
This time a nurse kept insisting it was Lupus. And that was the first time I had ever heard of this disease. After that, I finally saw the rheumatologist. They did a whole lot of tests and took lots of blood and urine. Afterwards, I also saw a dermatologist which double confirmed it by doing a skin biopsy. I had SLE. It hasn’t spread out, but I do feel a lot of fatigue and I am constantly getting the butterfly rash and just rashes in general.
The “Fun” Stuff
So all in all, I went to the hospital two times before I officially got diagnosed with SLE. After I got diagnosed, my hair started falling out and it crushed me. I was so scared and so self-conscious and it had me so emotional. I also started my treatment of Prednisone and Plaquenil. And now most recently, I started on Imuran. Scratch that, I tried it for about a week and it sent me to the hospital. I thought I was going to have a heart attack! No more Imuran for me.
The side effects have me going crazy on a daily basis. One day I’m good, the next I feel bad, but I guess that’s what happens when you’re a Lupie. The major things I’ve been struggling with lately are the weight gain and losing my hair again. I try so hard to be strong and keep my faith.
But I’m alive and I am thankful for that. Now I take medicine every day and I go to my doctor’s visits. All the while, I am still trying to get used to all the new symptoms I experience.
I suffer from minor anxiety as well as minor depression. I don’t take meds for them because I try to control those icky feelings myself. I’ve always felt that I caused myself to have lupus. In 2012, I suffered a traumatic experience where I tried to commit suicide due to feeling overwhelmed by life. I let myself fall into the deepest hole I’ve ever fallen into and I vowed to never, ever again take antidepressants.
The Recent Years
These past two years have been absolutely crazy. I’ve gone to the hospital about four times. And this lupus life has managed to change not only my life but my relationship, too. See, I’ve been with my boyfriend for seven years and I’ve been living with him for five. My diagnosis has taken a huge toll on him, too. I’ve changed so much since he met me.
It might sound ugly, but I always say that I feel like the old me died and I was reborn as the me with lupus. I find myself to still be in denial. And maybe, just maybe, one day I’ll be able to say I’m okay with this and play the card I was dealt. As of yet, I’m not completely ready. I work full time and I do everything I’d normally do. Except it’s hard for me to do little things like clean my house and do laundry. Thankfully my boyfriend helps me with it and I just hope this keeps making us stronger as a couple.
I deal with a lot of fatigue on a daily basis and the famous butterfly rash. One of the main things I deal with that I’m self-conscious about is I’ve gained over 40 pounds since I got diagnosed and started taking prednisone. I’ve also already experienced shingles (which was the worst pain I’ve ever experienced last year on Christmas Eve). Now I currently have a stress fracture in my right foot and am condemned to wear a boot for 6-8 weeks.
Having lupus makes me thankful for a lot of things.
I am thankful for the internet!
I am thankful I have the support of my family and friends who help me get through the tough times.
I am thankful I came across an online support group so I can learn more about lupus and how to deal with it. It’s nice to talk to people who know exactly what you’re going through and not have to worry about being judged or looked at differently.
I honestly don’t know what I would have done if The Unchargeables didn’t exist. It has helped me so much. There’s so many great people on here who, without knowing me in person, offer lots of emotional support along with awesome advice. It’s a place where you can come together with people who completely get it and a place where you can come vent and everyone will listen.
Thank you for letting me share my story that I’ve never really opened up about before.
About the Author:
Cynthia is 28 years old and was born and raised in Miami, Florida, to parents from Nicaragua. She works full time and lives with her boyfriend. She was diagnosed with lupus (SLE) on January 22, 2016 following the appearance of a series of red rashes on her face. Now she just tries to take it day by day, though she finds that some days are easier than others.
I’m on a deserted island in a sea of deserted islands; my chronic condition is the sea that separates me from others. We all have made shift rafts that allow us to visit one another from time to time, but we always end up back on our spot of ground. Sometimes I visit someone with Lupus, or Fibromyalgia, or even someone who lives with the same condition I have: daily chronic migraine and I feel, for too brief moments, that someone else understands. I don’t have to educate or feel that niggling obligation to prove that, indeed, I face it every day; that I’m not faking it.
I’ve had a daily chronic migraine for eleven years. Although the chronic migraine condition is defined as lasting more than 15 days per month, I experience some level of pain every waking minute of every day. So do most of the people I know who have the same condition.
I’m sure I started my search for relief like many:
I wanted the magic pill. I had unquestioning faith in the medical community and thought that, surely, there was some way to fix this thing that had turned my world upside down. Then I discovered that medicine is as much art as science and that my condition, like so many, eludes effective long-term treatment.
So I turned to alternate therapies.
Everything from acupuncture to massage. From the power of positive thinking to elimination diets. From consistent sleep to exercise. From trigger point injections to radio nerve ablation. They, like the medications I’ve tried from western medicine, didn’t provide long-term effective relief.
It’s easy to get disheartened.
Even those of us who manage to hold onto hope on a regular basis, spend some time in the clutches of despair, wondering if we can keep going through the long days that will inevitably follow. So what does work? How do we move forward? How we do more than exist? How do we live?
Although there’s no magic pill or wand here either, I’ve found some practices that help and that, unlike some medications, continue to provide some benefit no matter the length of time I practice them.
Manage Your Health
My health is solely my responsibility.
I only see doctors who will work with me. A doctor who will partner with me, one who explains their suggestions and who listens to and answers my questions, one who will graciously accept me declining specific treatments for reasons I explain is the cornerstone of me effectively managing my health. Doctors that unilaterally make decisions regarding my medications, procedures, and treatment are immediately fired. Anything I put into my body and anything that is done to my body is ultimately my decision.
I research and read and learn.
I bring possibilities to my doctor as much as they present possible treatments to me. And I inform them of everything I try and its efficacy or lack thereof.
I am my own guinea pig.
There is little I won’t try if it’s low risk and, with the knowledge and help of my doctor, I can research and implement on my own. I’ve been a vegan and a vegetarian. I’ve practiced yoga. I’ve removed processed sugars from my diet. I’ve researched hormones, their impacts and ways to regulate them through diet and exercise, and implemented those dietary and exercise ideas. And I’ll continue to see what might work. Ensure that any changes you make or therapies you try is under the supervision of a doctor! Many practices can have effects on current medications and other therapies you may be undergoing as well as present health risks that only your doctor can help you understand.
Get An Extra Spoon
No matter what our circumstances: spouse, parent, employee, single, friend, lover, there are things that need to be done in life. Grocery shopping, or ordering food when cooking is entirely out of the question, but eating is possible. Cleaning so that there are times when we can actually see the floor. Laundry, bathing, brushing teeth. These things sound easy. But when getting out of bed is a feat of extraordinary fortitude, the multitude of tasks after that are simply impossible.
I used to spend my “good” days attending to all the things that don’t get done regularly, followed by falling exhausted into bed with hopes that tomorrow might bring another “good” day. Soon I found that all of my “good” days were spent doing things that had to be done. Certainly, it felt good that a few tasks were checked off the list, but the list never ends. Add to that exhaustion that inevitably followed the frenzy of activity. My cup was always empty; my spoons spent on either feeling awful or doing what had to be done.
Those of us managing a chronic condition feel like we need to do it all, and in a fraction of the time, it takes those without our particular challenges. I’ll let you in on an enormous secret: we don’t. We will not be bad spouses if we don’t get the house cleaned. We will not be bad employees if we miss work on occasion. We will not be bad friends if we can’t make a birthday party. Most importantly, we are not bad people because we aren’t able to function the way many others do.
It’s hard to believe; to convince ourselves that, indeed, we are worthy; that we are enough. We have those angels perched on our shoulders shaking their fingers at us. Well tell that angel something from me: go pound sand. Even better, tell that winged creature yourself. Really get into it! Get creative. Make up horrible names for the beastie. It feels fantastic.
You have permission to care for yourself. We can’t continue to spend spoons on the incessant “shoulds” of the world. Those actually cost more than one spoon. Try it out. Keep hold of that spoon for the day. And keep hold of another one the next day. Chose a different spoon one day for a week and see how you feel at the end of the week. Seriously, make a note of how you feel on Friday night or Sunday night or whatever night works. Then take that entire week and save spoons. Reassess at the end of seven days. Scan your body. Scan your mind. Only concentrate on that. See how you feel. If it works for you, keep it up.
I don’t mean this in the spiritual or prayer sense, but if that works for you, by all means, run with it. It makes more sense to me as a method to train the brain. In managing my condition, I’ve tried everything. Medication, exercise, supplements, nerve blocks, Botox, trigger point injections, and more dietary changes than I can count. And still, meditation is the single most effective thing I have found.I started it because I’d read studies that showed it helped with
I started it because I’d read studies that showed it helped with chronic pain. And, as I’ve repeated said, I’d stand on my head and sing The Star Spangled Banner if I thought that would provide a modicum of relief.
I, like many, get tied up in horrible thoughts. About how worthless I am because of the condition, how I’m incapable of living a fulfilled life, how awful a parent I am, how terrible a spouse, how I’m not capable of working consistently on anything, how I just can’t take it anymore. And it goes on. So, on top of pain (and nausea, and light/sound sensitivity, and cognitive issues), I can find myself panicky and miserable.But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel.
But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel. This practice has offered up the ability to allow me to be human, and sometimes less than human. I can let myself, if not fold the towel and place it aside, throw it in and recognize the days that I need more self-care than to care for others. And it actually helps me think through ways to make that happen. It allows me to offer myself forgiveness and compassion for my weak moments, and to ask for help without self-recrimination. In a nutshell, it has offered me more freedom than I felt even before the daily chronic migraine struck.
It’s not perfect, and it took some practicing before I started to manifest forgiveness and compassion for myself. I still feel the pain (and nausea and light/sound sensitivity, and cognitive issues). But I have my life back. I can live joyfully when conditions are low enough without the thought that it will be short lived. I’ve traded in panic for peace, and terror for calm. Even in the midst of awful days, I’m still me, and I can actually see that there may be a good day on the horizon. It has allowed me to leave mere existence behind and live life more fully than I thought possible.
Kimberlee Maclean is a fellow Unchargeable who suffers from Chronic Migraine.
Dysautonomia (“Dys” from the Greek word for bad or malformed and “Autonomia” referring to the body’s autonomic nervous system (ANS)) is an umbrella term referring to a failure of the sympathetic or parasympathetic parts of the autonomic nervous system (ANS). It may also refer to an overactive ANS. The ANS is what controls the involuntary functions of the body. It affects the nerves, which carry information from the brain to the rest of the automatic nervous system, including the heart, blood vessels, bladder and sweat glands.
Dysautonomia can cause problems within the heart, affecting heart rate, body temperature and blood pressure. It is often a secondary symptom of other chronic illnesses. Some dysautonomia conditions are reversible however, many conditions, such as co-morbidity with Parkinson’s disease are not. It may affect a local area of the body, or be more generalized throughout the body.
Dysautonomia affects over one million Americans and close to 70 million people worldwide. It affects both men and women. Despite its prevalence, dysautonomia may take a long time to be diagnosed due to the lack of awareness among patients and physicians. It is an “invisible” disease, as symptoms occur within the body. Often symptoms are more observable after the patient is exposed to heat, anxiety, or physical activity.
The most common forms are POTS (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope), MSA (Multiple Systems Atrophy) and PNF (Pure Autonomic Failure).
Dysautonomia can occur due to injury of the ANS from another disorder, and may be genetic. It may also be caused by exposure to toxic chemicals, trauma or a viral illness. Some of the diseases that may cause dysautonomia are:
Diabetes Multiple Sclerosis
Alcoholism Guillian Barre Syndrome
Parkinson Disease POTS
Ehlers-Danlos Syndrome Lyme disease
Injury to the spinal cord or nerves HIV
Celiac Disease Lupus
Symptoms and Diagnosis
To diagnose dysautonomia, the physician will test the functionality of the ANS, especially on the organs that are affected. Tests will likely include measuring blood pressure and heart rate in several positions, using a tilt table, sweat testing, and deep breathing.
Common symptoms of dysautonomia are fatigue, impotence in men, faintness upon standing, rapid pulse rate with exertion, weakness, dry mouth, cognitive impairment, orthostatic hypotension, urinary incontinence, and constipation.
Treatment and Management
While there is generally no cure for dysautonomia, treatment of the co-morbid illnesses may be beneficial in reduction of the symptoms. Medications may be used to treat the individual symptoms of dysautonomia, such as controlling blood glucose and using medication to treat acid-reflux, or giving injections of botulinum toxin type A to manage hyperhidrosis (excessive sweating). Other management measures can include elevating the head of the bed, and adding a high-salt diet and other lifestyle changes. Taking cooler showers, standing slowly from a sitting position and other postural changes may help.
Depending on the cause of dysautonomia in the individual, prognosis can vary.
The term ‘lupus’ comes from the Latin word for wolf – the facial rashes associated with the condition were once thought to resemble a wolf’s bite.
The common term ‘lupus’ (lupus erythematosus) actually covers a family of conditions classified as autoimmune diseases. In autoimmune diseases the body’s own self-defence mechanisms (antibodies) become ‘hyperactive’ and attack normal healthy tissues within the body.
Autoimmune diseases can affect many parts of the body, including joints, blood cells, the heart, and other major organs, including the skin.
Among the lupus family, systemic lupus erythematosus is the most common and severe form of the condition.
lupus can manifest itself as both a ‘systemic’ disease (i.e. one that affects multiple organs of the body within one patient) or in a ‘cutaneous’ form (affecting only those organs of the integumentary system, including hair, skin and nails).
Although there are numerous sub-categories of lupus, the disease can be broken down into four main ‘types’:
The symptoms of lupus can vary from patient to patient. They may last for some time, or come and go over a period of time. Joint pain and swelling are among the most common symptoms and are experienced by almost all sufferers. Commonly, arthritis will affect the joints, including fingers, hands, wrists and knees.
Other common symptoms of lupus include:
● chest pain when taking a deep breath
● fever with no other cause
● general discomfort, uneasiness, or ill-feeling (malaise)
● hair loss
● mouth sores
● sensitivity to sunlight
● skin rash – a “butterfly” rash in about half people with SLE
● swollen lymph nodes
Another common symptom of lupus is photosensitivity (sensitivity to light) although at this time the exact causal relationship between lupus and photosensitivity has yet to be established and research is continuing in this area. Suspected causes of photosensitivity in sufferers of lupus include:
● change in autoantibody location
● inducing apoptosis with autoantigens in apoptotic blebs
● upregulation of adhesion molecules and cytokines
● inducing nitric oxide synthase expression
● ultraviolet-generated antigenic DNA.
● tumor necrosis factor alpha also seems to play a role in the development of photosensitivity.
It is widely believed by experts that lupus can be influenced by multiple genes. Lupus is commonly influenced by ‘gene plymorphisms’ and to date 30 of these have been linked to the disorder. However, research is still very active in this area, and little is known about some of these connections at the moment.
Lupus can occur at any age, but most commonly it develops between the ages of 15 and 44. Those who develop lupus at a younger age are more likely to suffer alopecia (hair loss) skin rash and mucocutaneous manifestations … however, patients who develop the disease later in life experience a far higher mortality rate. The mortality rate among those who develop ‘late-onset’ lupus can be as high as 50%.
Ethnicity also seems to play a role both in the likelihood of contracting lupus and the prognosis of patients. Caucasians are far less likely to develop lupus, and if they do are likely to suffer a milder variant, whereas Asian, African and Native Americans are more likely to develop more serious strains.
Survival rates after five years among Caucasians are typically around 94-96%. The only ethnic group with a higher documented survival rate are Koreans, with an average of 98%.
As lupus is categorised as an autoimmune disease, most treatments involve the use of immunosuppressive drugs such as hydroxychloroquine and corticosteroids. In 2011, the first new drug in 50 years for the treatment of lupus, belimumab, was approved in the USA by the FDA.
In addition, patients can do a lot to manage their own condition. Rest is essential, and avoiding direct sunlight can help to reduce symptoms. It is important to make family and friends aware of the condition and its unpredictable nature – the nature of lupus can make patients susceptible to stress and depression.
Facts and Figures
● Forms of lupus affect around 5 million people worldwide
● Systemic lupus erythematosus account for around 70% of cases
● Around 5% of children born to people with lupus will develop the illness
● The ratio of women to men with SLE is around 7:1
● Around 0.041% of the UK population has some form of lupus
Whilst lupus is categorised as an ‘incurable’ condition, through a combination of medication and lifestyle it is possible to manage the symptoms of lupus. Likewise, as treatments advance and research continues, most lupus patients can now expect to achieve a normal lifespan.
My name is Sherry. This is the first time i have written down all of the events that led me to where I am now.
When I was around 13 I started having severe bladder and kidney infections. I went through testing and the drs never really had a solid answer why. When I was 17 I was hospitalized for 10 days for what the drs called a bad virus..i had a bladder, kidney, upper respiratory and blood infection. I was septic and resistent to antibiotics. This is when I felt my body change and go haywire. Let me add here that I was a very active teenager and even got into weight lifting in my late teens.
Then when I was 22 my mom died in a car accident and I unfortunately was following behind her in my car. It was horrible. While in therapy I learned how much anxiety I had.
I was in dental school studying to be a dental hygienist when I got pregnant with my first daughter. That’s when the hives started. Just one here and there nothing too serious. When my daughter was a couple months old we got custody of my 7 year old niece (my sister was a drug addict and passed away in 2009 from her disease). I stayed in school and had my second daughter. I was always tired and stressed but like all the stories I have read, passed it off as just being overwhelmed.
5 years after my mom died I lost my step father who raised me. I graduated from hygiene school and started to work full time, 16 hour days right away. I ended up having a severe gall bladder attack and then removal.
5 years after my step father died my father died. All my parents were under the age of 60 and i was 33 and parentless. I was getting sicker and sicker but blamed it on stress.
In 2007 and for close to a whole year I suffered with the worst hive episode!! I was covered and miserable. I went through all of the allergy testing because of course that’s what the drs said was wrong. The only thing that would calm them down was steroids.
Fast forward to 2010 and I was involved in a bad car accident and that sent me spiraling out of control. Severe pain, numbness, headaches, herniated disks etc. Finally in 2013 my spine dr sent me to a rheumatologist to get tested for fibromyalgia. I proceeded to tell him about my crazy medical past and he was intrigued. He sent me for the testing and long story short diagnosed me with fibro, SLE (lupus) and RA.
Last spring I got extremely sick again and was hospitalized for 12 days. That started with the flu but i also had an enlarged spleen and liver and was resistant to antibiotics. I also have an essential tremor that started while in the hospital. They also found bronchiactisis in both lungs. I was also diagnosed last fall with Sjrogens by my opthamalogist.
So here we are now. I have not practiced for a year. I am sick, nauseous, blurred vision, shakey, headaches, painful joints etc. My life has changed DRAMATICALLY over the last year. The emotional and financial toll has been so hard but I am so incredibly blessed with the most amazing husband, daughters, grandbabies and friends!!
I am thankful for this devastatingly beautiful life!! Thank you all for listening to my long story and for all of your support through these crazy years!!! ❤