What Life Looks Like After a Lupus Diagnosis
Lupus had never been on my radar, but the diagnosis made total sense. It explained my current symptoms as well as symptoms that I had been dealing with for almost 10 years.
The actual lupus diagnosis did not come quickly. Over months following my first appointment, there were many phone calls and emails sent, as well as many more appointments with my rheumatologist and other specialists. It was shocking and quite scary to hear I had lupus. However, it was a relief to finally know what was going on.
Relief after brutal flares
Finally, after dealing with symptoms that had no diagnosis and having providers treat me like my issues were all in my head – getting a diagnosis was a relief. Looking back we realized that I most likely had my first real flare when I was 16. At that time all my symptoms were said to all be related to mono. Those symptoms lasted for 6 LONG MONTHS. But further testing was never done to see what else could be going on. We were led to believe that it was normal for mono to last 6 months which couldn’t be farther from the truth. Knowing what I know now, part of the issues I experienced was likely lupus-related.
Treatment after treatment
Over the coming months and years, I tried treatment after treatment with little success. I was often missing work because I was too sick to work. As a registered nurse, it is not acceptable to call off work frequently. Due to that, I changed jobs several times in the next 4 years. But I had a hard time finding something that might be a better fit for me and my health. Sadly, I had to “retire” at age 31. Finally, in 2013, I started IV Benlysta to treat my lupus.
For the last 6 years, it has the best option for me, along with Methotrexate and Plaquenil. This combo is truly the only combination that gives me a somewhat normal existence. For me, Benlysta is the only medication that has allowed me any semblance of a normal life. The times that I have had to stop the Benlysta, have been the times when I have had the most issues. So I often say that without Benlysta I really have very little quality of life.
Other autoimmune conditions
Since being diagnosed with lupus in 2012 I have also been diagnosed with other autoimmune conditions that my doctors feel like are related to my lupus, as well as conditions that aren’t directly related to lupus. In the last 7 years, I have diagnosed with: fibromyalgia, endometriosis, interstitial cystitis, severe debilitating migraines (some of which may be hemiplegic), Bertolotti's Syndrome, IBS, anxiety and depression, seizures, blood clots, possible POTS (Postural orthostatic tachycardia syndrome), and secondary adrenal insufficiency related to long-term steroid use.
The ups and downs of lupus
Living with lupus has not been easy for me. There have been ups and downs and many struggles along the way. One of the biggest being that in 2016, my health declined to a point where I was no longer able to continue working as an RN – or really work at all, to be honest. When I was working, I was calling in sick more often than I was working it seemed. It was a big decision for me to leave the career that I had worked so hard for and loved so much at the young age of 31.
My focus is on staying healthy
At this time, I have to focus on getting better myself rather than trying to work. Since leaving the workforce, I have put my time and effort into spreading awareness and advocating for those with lupus, chronic pain, and other chronic conditions. Three years ago, I started blogging and it has been an amazing release. I feel that I am able to spread awareness and share what it is really like to live with a chronic illness. By blogging, I am trying to do my part in ending the stigma associated with living with an invisible illness. As well as working to make sure that those living with lupus know that they are not alone in their journey.
Community support online
I also felt like there was a lack of good support groups online. I had tried just about every group on Facebook, and never found one I felt comfortable in. So I joined with a few other lupies and started a group on Facebook. It has slowly grown to over 600 members over the years.
But this group is more like a big family who cares and supports each other. It’s a place where the member can go and vent and not feel judged. This group is more than just a support group. It has saved me several times. I feel like starting this group gave me a way to use a lot of the skills I had gained through work. It also gives me something to work on and focus on!
My journey isn't that special or different from many others. But I truly hope that one day the journey I have been on can help someone else!
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?