Lupus Awareness Month | My Lupus Journey

Today is May 1. For most that date isn’t significant, but for me it has a big meaning. May first designates the beginning of Lupus Awareness Month. May gives me 31 days to spread awareness I about a disease that 7.55 billion people worldwide live with everyday. So I thought there was no better way to start Lupus Awareness Month than to share my Lupus Journey. Here is a brief look at the past 7 years and my Lupus Journey!! 

Systemic  Lupus Erythematosus (aka Lupus) is a condition that many have probably heard about but most don’t much about. I was one of those people, I had heard about for years but knew little about until I was faced with the diagnosis  at the age of 26. For YEARS, since I was kid,  I have had health issues that no one ever really able to diagnose. I often had less energy than other my age, no matter how active or in shape I was. I seemed to always be more tired than those around me & much rather preferred to sleep rather than doing something fun. I have always gotten sick more frequently than most, but truthfully I always just chalked it up to being busy or to the fact that I worked around sick people everyday. Little did I know that there was actually a reason for all the issues I was dealing with and it wasn’t just because I was busy. 

I have always been someone who gets sick more than others my age. I often thought I was just unlucky or that maybe my immune system was weaker than the next persons. Looking back over my life I can remember being sick a LOT, even way back to when I was in elementary or middle school. But as I grew up I started noticing it more, and the people closest to me started noticing too. I can’t tell you how many times over the years someone has asked me why I get sick so often. I never really had an answer, I always just replied “Who knows, it’s just me I guess!”

In early February of 2012 I got a respiratory infection for what felt like the 500th time that winter.  This one was different though. I found myself really struggling to get a good deep breath and felt like i could never catch my breath. The constant coughing was INTENSE. It got so bad that I actually ended up Hospitalized for five days while having and multitude of tests as the doctors tried to figure out what was going on.  By the time they sent me home I really had no more answers as to the problem at hand than I did when I went into the hospital five days prior. Sadly, the symptoms did not improve and I ended up having to take an entire month of work. At this point I was put on high dose steroids which seemed to be the only thing that made me feel even minutely better.

Fast forward a few months to June of that same year. Even though it was several months after the initial incident I was still having breathing issues along with a multitude of other problems like pain, and fatigue. My pulmonologist (Lung Doctor) decided at this point that she wanted to do more testing. She felt like there was more going on than what we were dealing with, with my lungs. I was constantly tired. NO, I was EXHAUSTED all the time. I was starting to have way more aches and pains than I normally did and overall just felt AWFUL the majority of the time. So my pulmonologist decided to run labs looking for any autoimmune issues. Much to our surprise my ANA, sed rate and complement levels, among others, were all VERY positive, even though they had all been negative a few months prior.

At this point she referred me to a Specialist who deals specifically with autoimmune issues like Lupus for further testing. I saw this doctor multiple time, sent many emails and made many phones calls to her office before she finally landed on the Lupus diagnosis and Lupus and decided to start treatment. I can truly say that I was definitely not overjoyed to be diagnosed with such a big and powerful disease. But at the same time I can say it was a BIG relief. After all the years, and especially the last few months, of having issues that no one could put their finger on, getting a diagnosis was a relief. As we looked back at the previous years, we realized that my first real lupus flare was most likely back when I was 16 or 17. At that time I was diagnosed with Mono which lasted for SIX LONG MONTHS. They never did further testing to see what else could be going on due to the fact that Mono doesn’t last that long in general. Instead they just kept insisting that it was the Mono that continuing to cause the issues I was dealing with. Knowing what I know now,  I can see that part of that was most likely the first of many lupus flares to come. 

Over the coming months and years I tried treatment after treatment with little success. I was often calling into work because I was too sick to work. But as a Registered Nurse it is really frowned upon when you have to be off frequently, so I changed jobs several times looking for something that might be a better fit for me and my health, before finally having to “retire” at 31. Finally in 2013 I started IV Benlysta to treat my lupus. It was the first medication to be approved by the FDA for treatment of lupus in many, many years. For the last six 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.

I have had many different symptoms or issues caused by Lupus over the years. Some relating to lupus and others relating to the other conditions that Lupus brought with him when he came. I deal with chronic pain, which is debilitating at times. I also have dealt with lots of fatigue, which much like the pain can often times been debilitating. Along with cognitive issues like poor memory or trouble finding the right words, to a very insufficient immune System. I still sick get sick much more than the average person. I can also always count on the fact that I will be sick with some kind of respiratory illness for most of the winter. Within the last year my Rheumatologist has decided that my lungs are being affected by the Lupus despite my having no problems with decreased lung capacity or decrease in oxygen saturation. Which is the reason I get so many respiratory infections. I really think i should buy some stock in an antibiotic company for as many antibiotics I have been on over the years. However, since being diagnosed with Lupus in 2012 I have also been diagnosed with other autoimmune conditions that my drs feel like are related to my Lupus and conditions that aren’t directly related to Lupus. In the last seven years I have diagnosed with: Fibromyalgia, Endometriosis, Interstitial Cystitis, severe debilitating migraines (some of which may be hemiplegic), Bertolottis Syndrome, IBS, anxiety, seizures and depression, blood clots, and possible POTS. I also have been diagnosed with Secondary Adrenal Insufficiency related to long term steroid use. 

My health has gotten to a point where I am no longer able to work 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. But at this time I have to focus on getting better myself rather than trying to work.

Some might wonder what living with a chronic illness like Lupus could teach someone. But truth be told, I have learned and gained so so much. One of the big things I’ve learned is how awful some people treat a young person with a disabling Illness that they can’t see.  In today’s society if you don’t look sick or walk with a walker or use a wheelchair you can’t possibly be sick. People just don’t understand invisible illness. People just assume that if they can’t see anything wrong with you than you must be lying right just want attention. But with the conditions I have they aren’t easily seen by an untrained eye. The only times my conditions are visible are when I hurt and have an abnormal gait due to the pain. Or when my lupus rash is out in full force and my cheeks look very sunburned. Or even when i haven’t slept in days because of the pain and you can see how exhausted I am all over my face.

Another big thing I’ve learned since doing diagnosed is that it is really hard to keep friends when you are chronically ill. Going back to what I said above people just don’t understand and many don’t want to take the time to understand. Most people won’t understand, or tolerate, plans being constantly cancelled or birthdays being missed. It’s easy for them to assume that I am just blowing them off, when I would actually give anything to be able to get back to a “normal” existence so to speak. I would give anything to be able to do things on a whim, or go out without having to worry about how long one night out to dinner and a movie will put me in bed to recover. I guess it’s one of those things that you really can’t understand until you live it.

That being said, it’s not all bad, there are good things that have come from my diagnosis as well. I think the best thing part of this whole situation is the life long friends I’ve made along the way. I learned at the beginning of this that we all need support. No matter where that support comes from we all need some level of support. Living with a condition that impacts almost every single aspect of your life is overwhelming. So it’s nice to have someone to talk to who understands the struggles that come along with living with any chronic illness. After my diagnosis I felt so alone because no one I knew personally had ever dealt with anything like this. And they didn’t understand. So finding friends who live the same life I do made me so happy. I could talk to them about the struggles and know that they understood and weren’t judging me for the way I felt. 

I searched high and low after I was diagnosed looking for a support group where I felt comfortable.  Sadly I was not able to find exactly what I needed and was looking for in any exhausting support groups that I tried. So I had an idea. If I can’t find the support I crave why not create it? And that’s exactly what I did, I joined with some close friends who also have lupus or chronic illnesses, and we started our own group on Facebook, called Lupie Groupies. It was small at first but now we have grown to over 600 people. Despite the size or the growth we have seen, we work really hard make sure the feel of the group doesn’t change. It was important to me to make sure that anyone who needs support can get it. This group truly become a second family for me and many of our members.  We all know that it is a safe place we can come to get things off our chest or just vent about our day without any judgement. I know it sounds strange to some but I have met some of my closest and life long friends in this group. I also was able to start a blog where I discuss all things Lupus and living with chronic conditions. The blog gives me the ability to teach in a sense. It allows me to share my life and my health with others in such a way that it doesn’t feel that I am forcing it on them or judging in anyway. My dream was always to become a Nursing Educator and teach in a nursing program. Sadly after I got sick that dream had to be filed away for maybe someday. Have the chance to form the support group and create the blog have truly been a huge blessing to me. It gave me back part of what I felt like I was missing after having to leave nursing. It makes me feel useful.

Living with Lupus, or any chronic illness, is not easy. There will be peaks that are very challenging and there will be valleys where everything seems to be status quo. It is no doubt a life changing illness. Even when my disease is not as active it still impacts my daily life. That being said you can make one of two decisions when you get a diagnosis like this. You can choose to fight. You can fight to get the best treatments, fight to get better doctors, and fight to get the care you deserve. Or you can just sit down and take it. No matter what you decide you have to do what is best for you. Personally, I wasn’t taking this diagnosis sitting down. I decided long ago that I was going to FIGHT. I also decided that I was going to do everything in my power to spread awareness of Lupus and other chronic conditions. I also wanted to make sure others with Lupus never had to feel alone. This fight is bigger than me but I am always going to fight for what I deserve.

With Love,

Amber i