It seems like a lifetime ago that my rheumatologist first said the word lupus….as in “You have lupus.” But in reality, it was only 2 years ago. I can’t really say that my life changed when he said that word: I had already been living with the disease for some time by then. Like so many of us, I just didn’t have a name for it.
What Is Lupus?
Lupus is known as an “autoimmune” disease. This essentially means that your immune system mistakenly believes that your body’s own organs and tissues are foreign invaders. It tries to fight them off or destroy them. Your joints, skin, kidneys, brain, heart, lungs, or nervous system – basically any part of your body – can come under attack. Some people with the disease may have only mild symptoms while others have severe life-threatening symptoms.
Most people with lupus will have times when their disease is “flared” (meaning increased disease activity), followed by periods of remission when they seem to feel better again for a while.
What Symptoms Did I Have?
I was working as a hospice nurse when I first started to seriously think something might be wrong. Since I saw my patients in their own homes, I was routinely driving up to 200 miles every day to get to them. Most weeks I was spending 50 hours or more working, so it was easy to blame the fatigue and general feeling of crappiness I was experiencing on that. But then the rash that I had been getting on my legs as a floor nurse doing 12 hours shifts came back. And I started getting fevers. I had never been sickly, but in a four month period, I had pneumonia, strep throat, and then an outbreak of shingles.
And I never seemed to fully bounce back.
I felt terrible. Like I was going through every day weighted down by a heavy wet blanket of exhaustion. And, I was starting to think that I was developing dementia; I was losing things and forgetting things. My entire body hurt. Especially my feet and ankles, those areas were the worst. That pain was so bad that I would have to scoot down the stairs in the morning on my backside because it hurt too bad to walk.
I couldn’t spend any amount of time outdoors without getting itchy red rashes on my face and arms. I was a total hot mess.
When I felt like I just could not go on any longer, I finally did what I would have insisted any of my patients do months ago: I went to my doctor.
Why Did I Ignore My Symptoms For So Long?
A huge part of my identity was wrapped up in being completely self-sufficient. I prided myself on working hard and never asking for help. Being sick? Other people could be sick – that was what I was good at – helping people when they were sick. But I was not one of those people. That was just not how I saw myself.
And that really is the culture in nursing: others get sick, but not us. We are the caregivers. We make terrible patients. My attitude was that if I am physically able to get out of bed, then I have no excuse not to go to work.
So, I worked through my pneumonia. I took all of my antibiotics like a good patient. And then I did the same during my strep throat episode. Later, after I finally recovered from my shingles outbreak, I decided that it might be a good idea to at least go and have a physical. I figured that I was probably just really run down and the FNP could give me some advice to get me back to feeling normal again.
What’s the problem?
I’m still not sure what I expected the outcome from my appointment to be. Maybe I thought there would be an “Aha” moment and she would say “I know how to fix it.”
Of course, that didn’t happen.
What I do remember is leaving there feeling like she hadn’t listened to me at all; like she had just blown off my symptoms. I came out feeling confused and a little humiliated…embarrassed that I had talked about my symptoms at all. I convinced myself that I was just complaining too much. I was a whiner. Most likely everyone had similar problems, right?
Looking back now, though, I realize how non-specific the symptoms were. She really didn’t have a lot to go on to form a diagnosis.
She did order some routine blood work, but I didn’t go to have it done right away. I waited another month before getting the labs done. Mostly because nothing had gotten better… I still felt like crap.
So I had my blood drawn then went right back to work.
Getting Unexpected Results
By this time I had changed jobs. I simply wasn’t able to continue doing the travel and long hours that hospice demanded. I was working in an office now, but still struggling with the exhaustion and pain.
I was shocked when a couple of hours after I left the lab I got a call from the FNP telling me that the results of my blood tests were back. She said she was concerned because my liver enzymes were very high. And she also said that I was anemic. She said she didn’t know why, so her plan was to send me to see a gastroenterologist to find out what was causing the elevation in my liver enzymes.
Before that could happen, however, I ended up at the emergency room.
Out Of Time & In Need of Answers
It seemed like everything related to my health started to snowball at the same time. I went to the emergency room in the middle of the night because the abdominal pain and vomiting just wouldn’t stop. They decided that my gallbladder had to come out. During that surgery, the surgeon noticed that my liver did not look “right”, so he took a biopsy. The results showed that I had some liver cirrhosis.
I have never been a drinker, so I was completely stunned. In fact, that is one of the things that I’ve found the hardest to talk about with people. It feels like they are looking at me with a “yeah, sure” kind of look and they don’t really believe that anyone could have liver cirrhosis when they do not drink alcohol.
In the meantime, the hematologist that I went to see because of my anemia ordered more blood tests that included an ANA and ESR, plus an AMA. Those results led to the first diagnosis: autoimmune hepatitis. I was terrified.
This was also the first time in my life that I had ever had to take medication of any kind. I was started on 60mg of prednisone every day and was on that dose for almost 3 months. The gastroenterologist added Imuran and finally started to taper the prednisone down. Because of other symptoms I continued to have, she ordered a blood test called a DSDNA, and that was when they diagnosed me with lupus. And the hits just seemed to keep coming.
In the past 2 years, I found out that I have lupus, autoimmune hepatitis, rheumatoid arthritis, and vasculitis.
Lupus made me take a step back and reevaluate my priorities.
How Am I Doing Now?
I am still learning to live with the disease. There are days here and there when I feel almost normal, and those are the days when I think that they made a mistake. Then by evening or the next morning, my symptoms are back with a vengeance because I overdid things when I was feeling good.
Maybe someday I will learn to manage it better. I have a ways to go for sure.
I still work full time in an outpatient surgical office. I’m fortunate because I’m able to take the days that I need for my many medical appointments. There are also days that I just don’t feel well enough to go in and my boss is incredibly understanding. I know that most people with lupus are not so lucky.
Since I’m trying to be a good patient, I have become very good about taking my medications. I even have reminders programmed into my cell phone so that I never miss a dose!
Right now my rheumatologist has me on a weekly injectable lupus medication called Benlysta. I have only been taking it for 3 months but I think the fatigue might be a little better than it was. And I still take the prednisone but now I am only taking 10 to 20mg each day. The dose changes depending on how much inflammation I have. I also take plaquenil for the lupus, metformin because the prednisone raises my blood sugar (add type 2 diabetes to my list of problems), omeprazole, and aleve for the joint pain.
How Has Lupus Changed My Life?
I have definitely had to make changes to accommodate the symptoms, medications, and medical appointments that go along with this disease. But more than that, I’ve started to take time to do things that I enjoy doing and to spend time with the people I love. Before lupus, I think I gave most of my energy to my work. Lupus made me take a step back and reevaluate my priorities.
For now, I’m taking one day at a time, taking the good with the bad, and finding joy in each and every new day.
Velvet Larrabee was diagnosed with lupus in 2016. She refuses to let it keep her from doing the things she loves. Her current passion is her blog, asnowbirdstale.com where she spends most of her free time trying to create content she hopes will inspire others living with lupus.
4 Comments on Velvet Larrabee: My Road to a Lupus Diagnosis
Thank you so so much for sharing your story!! I am trying to find out what is going on with me. Its been years of these symptoms and its only getting worse. I have another positive ANA, with some other labs out of normal range. So I am being referred, yet again, to a different rheumatologist. I am praying that this one will want to help me determine what is going on instead of go out of his way to make me feel ridiculously stupid. You will be in my prayers!
If your ANA was positive, I’m surprised your doctor didn’t start you on medication. I just got my “official ” diagnosis of lupus on friday but my rheumatologist started me on plaquenil when my ANA was positive and did more blood work and I went back 3 weeks later and she reviewed the last blood work and put me on prednisone. Not understanding why the first rheumatologist is sending you to another one?
HI Velvet (beautiful name!), I loved reading your story, as unfortunate as it is. And I feel for you.
I could relate to a lot of it. I too was a nurse (31yrs) and often think of my working days and if I had symptoms over those years etc. I too had been a hospice nurse for awhile as well as a home health post op infected wound care nurse who traveled up to 500 miles/week. I loved that job! I cannot even imagine doing it today though! I was just diagnosed in July 2018 but now know that I have been actively ill with Lupus for at least 10 or more years. More and more stress in the past 4 years made me sicker and finally brought me to the diagnosis. I’m learning each day now to connect the dots of my years of symptoms and how to manage this disease as life has forced me to do not much else but manage it. I have been the sickest in the past year, than ever before. Thank you for helping me understand even more and to know even more so that I am not alone in this.
Hang in there with work. I’d give anything to be able to be nursing again. With healing hugs always, Maureen
Your story sounds like my own.
I have what looks like a semipermanent sunburn on my cheeks and between my eyebrows. When I am in a flare up, I ache bilaterally, my muscles are so stiff, i have to rest a lot, stretching helps for a few moments but not long, my joints are stiff and sore, I am fatigued, my feet and ankles swell a bit, my mind gets foggy. I just feel awful.
I haven’t been diagnosed yet, my bloodwork is always fine but I don’t think I have been tested for antinuclear antibodies yet. My doctor doesn’t know what to do with me but I do have a referral to a rheumatologist at the end of November. My hopes are up that he will be able to diagnose me. If he can’t I think I will be quite disappointed. No one wants to be ill but I feel like I just need to know why I feel so bad so often and the flare ups are lasting longer. This is getting worse.
I think I have been living with this for many years but this last year has been the worst. I can’t just push through anymore, and in fact, had a flare up that was so bad I missed almost two weeks of work. I could be off work more but I feel like if I succumb I won’t have a normal life. I push through a lot of days.
Is this typical of the period before diagnosis? Does this sound like lupus to you?