While living with lupus is hard enough, writing about it might be even harder. I used to try to not reveal too much about the pain I live with but I do not want anyone else to go through what myself and 1.5 million Americans deal with on a daily basis.
So here is my story…for everyone to see. The WHOLE story. Don’t say I didn’t warn you.
Like most people with lupus, it took years to receive a diagnosis. All throughout college and the beginning of graduate school, I had “mysterious” illnesses. The most painful being pleurisy, which at the time, no fluid was found on an X-Ray at the Emergency Room so I was diagnosed with costochondritis and sent on my way. The most visible was a rash which I’d only rarely get after being in the sun. I’m Italian. I can get VERY tan in the summer. So it really wasn’t until I was in the sun in the Caribbean that I’d get a mysterious rash on my hands and a little on my chest. I saw a doctor once when I was on vacation in Jamaica who did not know what it was and by the time I got home and got to a dermatologist, it had faded (note to everyone: ALWAYS take pictures).
Fast forward a few years…I was tested for lupus but the doctor said I didn’t have it. My ANA was positive and my symptoms continued including almost daily headaches, but I was still a mystery. A few hospital visits for chest pain, some cortisone cream for rashes and I was living life. During the summer of 2011 I was having a particularly rough time. I just didn’t feel right and was starting to think I was crazy feeling sick all the time and having doctors tell me that I was fairly healthy. No one wants to be diagnosed with an illness…but I knew in my gut that something was not right.
I was referred to an excellent rheumatologist who did a whole workup on me again. My ANA was still positive and my Double Stranded DNA was elevated as well. Based on my symptoms, he concluded that either I’d develop lupus in the future or relatives of mine had autoimmune issues…but as of then, I was in the clear.
Phew. That gave me some sort of validation and relief. There was a reason I was feeling this way but hopefully it wouldn’t amount to anything.
In September 2011 that all changed. Stress is known to bring on lupus flares and stress was an understatement. My cat got fleas. EW. I am not usually a neat freak but I became one and was so disgusted at the thought of bugs being in my house. I had bites on me and had to clean the apartment, but I went to the extreme. We’re talking bug bomb-ammonia scrubbing-washing everything that touches the floor. I was nuts. And beyond stressed.
I started to develop a rash that looked like discs all over my body. I remember describing them as looking like red blood cells (ok…I love science). I made an appointment with a dermatologist thinking I was having a reaction to all of the chemicals I was surrounding myself with in my tiny apartment. The dermatologist decided to do a biopsy. On the spot. And I was alone. Because she suspected something autoimmune.
I thought we said that I DIDN’T have lupus? I had a panic attack and needed a nurse to hold my hand during the simple procedure. I left the office in tears crying my family that I knew again, in my gut, that it was lupus (now writing this I feel like Dr. House).
I received a phone call from the dermatologist confirming that the biopsy revealed autoimmune abnormalities, and that I probably had lupus and should follow up with my rheumatologist again.
Back to my rheumatologist. He was the most reassuring doctor I have ever been to and really helped me get through my diagnosis. Being 26 and hearing that you have a chronic illness isn’t easy…but he helped me realize that it wasn’t that bad and that I would be okay. He suggested me starting Plaquenil, 200 mg, two times a day. I freaked out. At that point the strongest medicine I had taken was antibiotics (except for some pain meds with the pleurisy in the hospital). Now he wanted me to go on a MALARIA medication. Indefinitely. No thanks.
Stubbornly, I put it off for four months and with my friends by my side, started the medication that I’ve been on since January 1, 2012.
The next few years were okay. I had lupus, but I felt the same as before I was diagnosed. It took some getting used to mentally. Although receiving validity that all of my symptoms were real and “manageable”, it was still incredibly tough to hear that I was going to be living with a disease for the rest of my life.
In 2013 I started feeling joint pain primarily in my hips. I decided to go gluten free because I heard that it could help alleviate some of the symptoms and it did help for a bit. Towards the end of 2013, the pain increased and I started physical therapy. My rheumatologist said that when my hips hurt while laying on my side in bed or on a couch, it’s time for cortisone injections. By November 2014, it was time. I had put it off long enough…longer than I put off starting Plaquenil. Why? Because I was petrified. I have an irrational phobia of having an allergic reaction to any medication that I’ve never taken before. So I was not scared of the needle or the pain…I was afraid I’d die from cortisone. Sounds silly, I know, but any of you who know what anxiety feels like, I was crying in the office with my mom and rheumatologist before he gave me my first shot and they finally gave me Klonopin to calm down.
The shots helped. Unfortunately, I’m part of a very small percentage of people who experience a “cortisone flare” afterwards, which is increased pain for days before it starts to help. It takes about two weeks for me to feel the full effect but is incredibly worth it.
December 2014 was my worst month since I had been diagnosed. I spent my birthday with doctors and had to take 3 weeks off of work. I had never experienced fatigue like that up until this point. I slept and slept and my mom finally helped me to the couch, where I fell asleep sitting up. I was dizzy and disoriented…and scared. Plus, joint pain was starting and I was constantly hurting. Why was this happening? I thought I wasn’t supposed to have lupus? I got through those few weeks and started to feel like myself again. I battled my first real flare. I felt strong. Not physically, but mentally.
I continued to work the rest of the school year but had to miss days more than I would’ve liked to. Even as a teacher I usually work summers, so I decided (with the help of my boss, family, friends, boyfriend and doctors) to make one of the toughest decisions I had made up until that point. I went on short term disability for the summer. “I’ll take this time to rest, strengthen myself and get better” I kept telling myself. I even started an online class because I want to become a Behavior Analysit.
No one, especially me, thought that lupus would continue to affect me the way that it did.
After returning to work at the beginning of the school year in September and starting my second online class, my health continued on a downward spiral. Although my job was very understanding, the stress of missing work sporadically took its toll. I felt unreliable, and it was tearing me up inside. Even my online class was slipping away. I fell asleep during a class one week and had to miss another because I was at the doctor…again.
In November I decided with the help of my doctors that it was necessary for me to be on short-term disability again. I also put the class I was currently taking on hold (Florida Institute of Technology was so amazing and understanding). The stress of everything in my life brought on a diagnosis of shingles in December. For the second year in a row I spent my birthday with doctors. I hated not working, feeling sick, not being able to socialize with friends and my boyfriend. I felt incredibly guilty that I had moved in with my boyfriend months before and now he was becoming my caregiver. Stress is a major factor in making shingles appear, so that’s what happened. Talk about pain 🤕🤕🤕🤔😧. I was put on a ton of medication…Prednisone, Valtrex, Neurontin & Norco. I was so incredibly dizzy and disoriented from all of the meds I was on that December was a blur. My lupus symptoms were increasing. I had horrible joint pain in my hips (which I went for injections every 3 months) but also joint pain in my hands, elbows, shoulders and knees.
I decided to go for a second opinion with another rheumatologist. She diagnosed me with fibromyalgia and said that my body was so used to feeling pain that my brain was sending pain signals more intensely and frequently than someone healthy. She did a full panel of blood work and my double stranded DNA levels were four times the amount they should be. Above 10 is positive…I was a 45.
She also recommended trying ultrasound guided cortisone injections rather than the regular ones I’ve been receiving. These injections use an ultrasound machine to really pinpoint where the inflammation and fluid is from the bursitis. They had helped to an extent, but she thought these could help more and hopefully last longer than three months.
The injections were pretty cool to watch (except they also made me a bit queasy seeing needles super far in my hips). But the relief lasted less than two months before the pain returned.
So I met with my regular rheumatologist again as well as a pain management specialist. My rheumatologist decided to try neurontin AKA gabapentin. Neurontin is an anti-epileptic medication but it’s also used for nerve pain. Considering I was diagnosed with fibromyalgia and was in constant pain, he thought this had a shot at working. He also mentioned Benlysta for the first time and said that that would be our next step, but he really was hopeful about the Benlysta. As far as pain management, I went there for one reason, which many people may not agree with…medicinal marajuana. It was just legalized in New York and one of the few doctors prescribing it was recommended to me. Unfortunately, fibromyalgia and lupus do not fit the criteria for receiving medicinal marijuana at this time, but the doctor I saw was incredibly optimistic. She worked in California for years where it is legal and said she has seen it help so many people like me. So depending on how New York State handles the laws in the next few months, I’ll be following up with her. She referred me to another pain management doctor int he same office though in the meantime. He liked that I was on neurontin for pain, but other than that was just able to prescribe pain medicine, which I did not want to get involved with. Everything was a “bandaid” for my illnesses. I was going to every doctor and listening to what they were saying, but my disease was in no way being managed.
Nothing was working.
I couldn’t help but start to feel depressed. How long is this flare going to last? My life consisted of a solid 10 hours of sleep, naps, stretching, doctors appointments and sometimes just lying in a dark room to fight the pain. I attempted acupuncture which was great, but then my insurance changed so I had to stop. I also had to stop driving because the Neurontin was making me incredibly dizzy…”impending motion” was the way my doctor described this side effect.
After three months I was back at my rheumatologist for regular cortisone injections in my hips again. I had always known I was hypermobile, but this time the doctor diagnosed me with hypermobility syndrome. That’s basically the same thing, but when pain is felt. I had to start wearing a hand brace to sleep to prevent carpal tunnel which was beginning from sleeping with my arms bent in every which direction.
The following month I was back again for a follow up and my doctor decided Benlysta would be the best route to take at this point. The Neurontin was not working so I was going to taper off that and once insurance approved Benlysta I could begin the infusions.
Great…or so I thought.
The day after I was at the doctor my doctor had an emergency and was out of the office for three weeks…with no backup doctor. The order for Benlysta was never written. I waited patiently and when he returned I was told it was written and insurance should take 1-15 days to approve it. Three more weeks passed. I was calling the office almost every other day and stressed out beyond belief because I was supposed to be on a medication that could HELP me…and I was just living life in pain.
I returned to my rheumatologist six weeks after he decided to put me on Benlysta. That should’ve been two or three infusions. I was hysterical crying in the room with my boyfriend waiting for the doctor. Out of anger, frustration…so many emotions. The first thing my doctor said when he walked in was what’s wrong, followed by “so how many infusions have you had”. He had no idea I hadn’t started. Now, I’m making my doctor out to be this horrible guy…he is BRILLIANT. This was just a long series of unfortunate events that I had to go through. The doctor left the room and came back saying that it was being worked on by insurance. No more than 10 minutes later there was a knock at the door. Someone walked in and looked at me and said “it was approved”. I instantly started crying. Remember, I’m the girl who’s afraid to try medicine. But I KNEW my body needed this. It needed something to fix what was going on…no more bandaids.
So here I am. My first three infusions are scheduled two weeks apart and then I will go monthly.
I’m keeping my fingers crossed, and thinking positively every day that THIS WILL WORK.