How I was diagnosed with Lupus

Greetings!

I had felt unwell for a while.  I knew something was wrong, I just did not know what it was or where to start. I ran fevers a lot and at some point I just thought it was allergies or something. My husband and I did however say that I needed to go and see a physician for a proper check-up, not just a GP.

One day I woke up with a red rash spread over my nose. It was more like red welts. It started to spread over to my cheeks. It looked awful! Being on your face, it’s not like I could hide it. So off to the GP I went.  This intergalactic alien looking rash was not cool. I was subjecting myself and others to this horror called my face!

3 weeks, numerous visits and medication later and it looked no better.  I decided to set up an appointment with a dermatologist.  This needed the big guns.  The week preceding I had a work away session on a lion farm. I came home on the Friday.  On the Saturday morning I woke up in such extreme pain. I was screaming from the pain – involuntarily. Got out of the bed and let out a scream. Lifted my coffee mug and let out a scream. It was so bizarre! Even my eyes hurt! I thought I might have gotten bit by a tic or something because such is my luck. My husband was disturbed by this and he suggested that we go to the ER.  I decided that there wouldn’t be any real doctors over the weekend at E.R and so I’d wait till Monday because this pain probably had something to do with the rash and my appointment with the dermatologist was on Monday morning.

Monday finally came. The pain and uncontrolled screaming had become worse. In addition I had become completely lethargic.  I was so listless. I went in and he immediately got me to lie down. He asked me a few questions about the rash.  I could hardly answer; my eyes had started rolling back in my head. I was going limp. He immediately called the rheumatologist at the hospital and had me admitted as an emergency.  He took a face biopsy. Damn sore but it was necessary. I overheard the dermatologist say lupus. He told me they were booking me in urgently because they believed it was lupus.

Now I look like something out of a horror movie. He took a punch and punched a deep section of my cheek. I had this big gauze on my face. I didn’t care because I was too sick to fight it and there was no way I could make this look cute. I was also walking around like a zombie. Totally out of it. Hardly able to walk, having to hold onto Irfaan.  Yep, The walking dead South Africa.

While waiting for a bed I called my manager and very matter of factly told tell her I wouldn’t be coming back to work from the appointment because they thought I possibly had lupus. Just a word to me at this point.  All I really knew is that I had a cousin who had passed away from lupus but that was all. I call my dad. Again I am not taking in what I am saying.

I had no idea how much meaning that word would take on for me from that day.

I’m put in a bed and they start running an IV with some pethidine and whatever else they thought I needed.  They were so upset with the GP that misdiagnosed me. He also gave me some bad cortisone that he should not have been prescribing. It messed with my blood results and that meant they could not say what condition I had.  We had to wait for the face biopsy to come back so that they knew what to treat me for.  They put a rush on it. Constantly following up with the lab.  They really needed it a.s.a.p.  In the meantime they gave me plasmequine. Plasmequine is actually anti-malarial medication but something I ended up having to take every day. By day 3 my rash was already improving but we still needed that biopsy to confirm. I was on plasmequine for 4 years and it kept the rashes at bay. However it eventually caused damage to my eyes as a side effect (this is a topic coming up later) but  this was standard meds that they had identified to help lupus…. 40 YEARS AGO. Yes, 40. See why I’m really pushing for lupus awareness? This is ridiculous. It’s a joke. Just not a funny joke.

That GP really messed up.  By the time I came to the hospital I was days away from leaving this earth because a doctor did not recognise a butterfly rash! Type in Lupus on google and it will show you a butterfly rash. A rash that stretches over your nose and cheeks.  How in 3 weeks did he not realise that this was butterfly rash?  I google the rash. Immediately sites came up with Lupus. I trusted him. For 3 weeks. Why didn’t he like everyone else, google it if he couldn’t figure out what was wrong with me?  Some of my doctors will whip out their phones and check name/interactions of medication etc. I almost died. I would have if I hadn’t sought the help of the dermatologist or if he had just asked a colleague or used GOOGLE! How could he not know??? To top it off he then prescribes meds he shouldn’t be prescribing any longer and it messes with my blood results which means it’s going to be taking longer to diagnose me and treat me accordingly. So I’m not quite out of the woods yet.

Eventually the biopsy came back. It was systemic lupus erythematosus (Lupus SLE).  I had Lupus. I had the kind of Lupus that attacks your organs. People around me are frantic. I have no idea how to feel. I am just carrying on as per normal. The reality of the disease has not hit me yet but when it did it was a succession of slow motion smacks like in a bad Chinese Kung Fu movie. In fact it took a long time for me to mentally own that I had this disease.

I am given a massive amount of medication and my rheumatologist explains that I have to be on chemo as well. Taken daily in small doses to supress my immune system. It’s very effective but obviously this means becoming a germaphobe because now I have a very low immune system.  This is how lupus started creeping into my life and forcing me to make changes. At one point my lupus was so bad I was having to inject myself with it every day. I had a massive box of meds and when I travelled I put them in a large Ziploc bag. I always wondered why I was never stopped when flying. Don’t get me wrong I’m happy to not have been pestered but I had some good schedule 7 stuff in there.

I read everything I could about Lupus. The disease, medical trials, medication and of course the herbal route.  I started trying out the anti-inflammatory diets, drinking dandelion teas etc.  I tried everything! There was always something new. One of my future posts will be about all the different suggestions I’ve gotten. Some are just plain cuckoo. It’s going to be a fun one because I’ve encountered some real crazies!

I then joined Facebook groups because I sought people who would understand me.  Here too I found different things to try but I find people who understand my struggles. What I didn’t expect to find was regular postings of people in our group in their 30’s and 40’s with R.I.P posts. It was jarring. It still is.

5 years later I don’t just try anything and everything like I did in the beginning. I’ve found that I need to listen to my body and do what works for my body. People spend their lifesavings on all kinds of promises made to them only to be taken for a ride. It’s incredibly sad to watch chronically ill people being preyed upon by people who want to make a quick buck. They are selling people hope and I can tell you from personal experience we will pay a lot of money for something that could make us better. The lengths people will go to for hope is both sad and scary. This blog might be about my battle with lupus and fibromyalgia but it’s meant for everyone who suffers from a chronic disease/condition. We face the same struggles.

I’ve had to look at having lupus and fibromyalgia over the years and instead of being angry, try and see why this was being given to me.  It’s made me put myself first. By force and against my but still. For once I had to put myself first. I had no choice.  Many of my loved ones have always expressed concern over me giving too much of myself to others. Always out there saving people and solving problems.  Now I am physically forced to focus on myself to ensure I stay healthy.

As I take you through my journey I will be doing a post on what these diseases have taught me.

I have been through so many health scares, hospital visits, innumerable tests; bloods, MRI, CT, XRAY and medical procedures that might leave some of you in complete shock. 

A lot of people say to me “you don’t look sick”.  What does Lupus look like? What does Fibromyalgia look like? It varies. I’ve learned to put on my war paint (my makeup) and dress up and show up when I can… with a smile. On the days I can’t I’ve had to learn that taking time out and staying in bed is me healing myself and that if I don’t I will end up in hospital. I also ask that you remember this when dealing with people with Lupus and Fibromyalgia… we might not look like we’re in pain but in actuality we might be holding back tears.  These diseases are invisible.

This was the beginning of my journey.  I had no idea at that time of what I was getting myself into (not that I had a choice). I’d like to think I’ve gotten better at managing it but it always throws something new into the mix… like me having a possible cardiac problem now.

They so many people that die from lupus, but there are, no proper statistics because no death certificate is going to say someone died from lupus. Instead they say for e.g.: kidney failure, heart failure, whatever. It doesn’t say lupus, so how do you ever get the correct statistics, of how many people die of lupus. I watched the reality series Dr G Medical Examiner for a while. It was scary how many people she suspected had died from lupus related illnesses. So those people would only have been diagnosed with Lupus once they have already died?

The aim of my blog is to bring you one story of Lupus.

I had had rashes on my elbows from lupus for 2 years before I was officially diagnosed. Once I started taking the plasmequine the elbow rashes stopped. So how long did I really have lupus before I was officially diagnosed? If I can bring awareness through my story maybe we can start reducing deaths of many young people from Lupus even if it’s just through getting diagnosed sooner.

Please share these articles with loved ones.  You never know who might need to read this.  You can also share and help raise awareness of this horrific life long fight. We made massive strides in cancer and I believe we can do the same with lupus. We can now say “Cancer can be beaten” but we cannot say the same about lupus. Until they find a cure or do more research we will have to carry this load for the rest of our lives.

Continue to follow me to for posts about current and past struggles and some random posts in between!

If you were diagnosed with Lupus, do you as I do, remember the day vividly?  Please feel free to share!

Please share this blog and help spread awareness for Lupus!

Ps: Earlier I heard about someone I know of who has lupus.  The lupus has now started to physically affect her brain. With Lupus it’s like spinning the wheel and wondering which organ/condition is going to be next…

Peace, love and happiness

Tracey