Lupus - My Story

One rainy Sunday I was experiencing body aches and pains so I booked in for a massage. This masseuse used his entire body weight via his elbow to massage me, It was painful at the time and I did indicate that the massage was way too rough for my liking. Little did I know the “masseuse” had managed to herniate two discs in my cervical spine although I didn’t discover this until weeks later.

The next day I couldn’t lift my arms and had shooting pain in both shoulders and in hands, after several weeks I saw an osteopath who stuck needles in my legs (acupuncture) which seemed to make me worse, then I booked in to a chiro who cracked my neck like a navy seal trying to assassinate me (big mistake) Eventually I gave up and went to a GP who was baffled, ordered an MRI and the herniated discs were discovered...

I was referred to a neurosurgeon who reviewed my scans squeezed me in immediately put me on steroids and we booked in for surgery. Lucky I didn’t make it to my surgery date as he was going away and wouldn’t be back until after Easter.

During this time my legs my knees my hip flexors and my jaw locked up and I was in extreme pain and I had no idea why. I was completely immobile I couldn’t get out of bed without ending up on the floor for hours and I was in excruciating pain. Since the joint pain spread to my entire body I was also experiencing chills, i was taking scalding hot showers and still shivering. I went to a physio for a few weeks and he couldn’t figure out why I wasn’t getting better. He commented on my rapid weight loss and recommended I get a blood test.

True to my stubborn personality I refused to take pain meds and yet another doctors ruled out nerve damage so I suffered until I was at capacity. I booked into my regular GP - she asked me how I was and I burst into tears (I never cry) I asked her to run a blood test specifically to test for connective tissue/autoimmune problems as I intuitively felt this was the issue.

By the time I got those results I had already been admitted to hospital upon presenting at the emergency room as I had developed a fever, vomiting and had lost my appetite and was in bed 3 days delirious and was unable to walk, dragging myself along the ground... when I tried to stand up straight or walk I would be struck with pain that would cause me to pass out. I would like to add that my pain threshold is something to be mentioned as I am extremely tolerant of pain. For me to complain of pain is not characteristic of me at all. I’ve been known to pass out before actually admitting aloud that I am in actual pain... So that should give you some indication of the severity of the pain I was enduring and had been for months. Upon arrival to the ER the nurses tested my blood pressure and sodium and within the hour I was immediately rushed to ICU as the levels were so low I was told could have likely had a seizure and died by the next day. There also appeared to be fluid on my brain but when a revision test was conducted a week later this was no longer present.

Initially the hospital thought I had a virus and I was in ICU for one week. The doctors seemed to have no idea what was wrong and they were wearing masks and PPE when coming into my room. Had I not ordered my specific blood test for connective tissue/autoimmune which had come back finally as my GP was notified when I was admitted to hospital. The blood test showed elevated ANA levels of 1280 (normal is 0) and had I not had this done prior I’m not sure they would have figured it out and come to the diagnosis of lupus. I have been a coeliac (another autoimmune condition) my entire life so I suppose this is possible. I also have blood tests yearly and had no inflammation markers elevated previously. I look after myself I am extremely disciplined I eat a strict gluten free yeast free diet and I am 100% committed to it, I exercise I drink a lot of water I hardly drink ever, don’t smoke and I take supplements. I don’t understand how this happened. Is it possible the sudden sedentary lifestyle that I had to adhere to due to injury triggered this? Environmental? I was living in a brand new apartment with large scale construction next door leaving my balcony covered in silica dust and also my car in the basement - I would wash my car and 2 days later it would be covered in silica dust... I would put my washing out on the line and it would be covered in the dust... obviously breathing this in wouldn’t be healthy. I’ve heard there have been studies exploring the connection between silica dust and the triggering of autoimmune diseases...

A virus ? How can this be determined? Why doesn’t anyone want to figure out the root cause and is only concerned with the symptoms?

I was initially on 15mg prednisone and plaquenil but was still suffering joint pain and swelling in multiple joints and extreme hair loss ... so the doctor recommended an immunosuppressive drug Methotrexate which really freaked me right out at the time as it is a low dose chemotherapy drug. None of my organs besides skin and joints have been affected liver and kidneys are being monitored every 6-8 weeks. This event was shocking to me as I really do take care of myself and my health and well-being is and always has been a priority. I can count the times I have been sick in my life on 2 hands. This could not have happened to a bouncier, healthier person. I really struggled with this illness because I identify STRENGTH as being one of my most admired characteristics and to be reduced to such a vulnerable weakened state was really difficult for me to come to terms with. I was denial for so long because I just kept telling myself I was fine or that I would get better.

I tolerated self injecting 15mg Trexject Metotrexate once a week well as I was not responsive to just Plaquenil and Prednisone. I weaned myself off the Prednisone within 6 months as I am aware that low term steroid use is not good for anyone.

I spent initially a good 8 months - 1 year healing - motivating myself to walk to stretch and keep moving - Lupus Rebel was a great help to me, especially the exercises on the site www.lupusrebel.com. I am currently on 10 mg Trexject Methotrexate self injected once every two weeks and looking forward to only being on Plaquenil to manage. I have not have another flare since the initial flare. I do not drink alcohol and do tend to self isolate as I am aware that being on Methotrexate compromises my immunity. I remember reading an article by a woman who had recently been diagnosed with Lupus - she had written a letter to Selena Gomez (a Lupus sufferer) and I remember how it made me feel. I am writing this article in the hope that someone who has just begun their journey into Lupus finds some comfort in the fact that with a balanced diet, regular exercise, no alcohol and a restructuring of your lifestyle to minimise stress (be selfish), you can live a semi normal life. Your hair will grow back, the pain will minimise... the most important thing to do is to take care of yourself first. You cannot pour from an empty cup. Take the time to heal. Healing is a process. It can take months or years. Be patient with yourself.

I feel incredibly lucky to be alive.