A PICTURE PAINTS A THOUSAND WORDS
Lupus is a lifelong disorder of the immune system. It's the disease of a thousand faces and different for everyone who has it. It has affected my skin, heart, kidneys, brain, joints and nerves. There is no cure and I'm allergic to the main drug most patients take for this disease. I take an immune-suppressant which is also known as a chemotherapy drug, the side effects are very unpleasant. This is the reason for my shaved head due to hair loss.
For those if you that don't know lupus is an autoimmune disease, which means that your immune system, the body system that usually fights infections, attacks healthy tissue instead. Antiphospholipid syndrome (APS) is an autoimmune disorder. Complications include blood clots, miscarriage, rash, chronic headaches, dementia , and seizures . APS occurs when your body's immune system makes antibodies that attack phospholipids.
I've had over a dozen surgeries, over 20 procedures, go for blood tests every 4 weeks for the rest of my life, get brain MRIs done every 3 months to monitor my bleeds/lesions. Most days I feel like a lab rat with all the testing. I've been temporarily paralyzed waist down twice now, my neurologist & doctors constantly tell me I'm a medical mystery. I'm monitored closely and have 10 physians/specialists who look after me. I also do aggressive physiotherapy weekly to help me walk.
It took 15 years, and 5 pregnancy loses to diagnose me with Lupus & Antiphospholipid Syndrome over 2 years ago. Doctor's constantly ignored me, I was told it was in my head, and didn't believe. So I decided to see a natural path and paid almost $400 for testing to be done plus the cost to see the natural path. The blood work came back flagged and high for inflammatory issues and my speckled blood was an indicator for mixed connective tissue disease. My doctor apologized she let me slip through thr cracks of the medical system and didn't believe my symptoms. It was a relief but I was so angry at our medical system and allowing them to have control for so many years. I suffered for way too long. I had to keep pushing and advocating for myself, I had no help or support. That's where self care is important, it's not just about eating properly or going to to gym, it's about putting yourself first when you feel something is wrong or your unwell. So many doctors will brush off minor issues, you know your body best, don't settle if you know somethings wrong. Don't take NO for an answer if you feel there's something missing.
After blood work was recieved and doctors had chance to review I went on a waiting list to see a Rhemitologist, it was 8 + months wait list in Simcoe County. Not even 2 months had past and I collapsed due to my heart and ended up in emerge. I was told had fluid around my heart and asked what medication I was on for the Paricarditis. When I told him I had no idea what the fluid meant and not being treated for anything he was shocked. He said he will contact my doctor immediately. Less then 2 weeks later I was being treated at Toronto western hospital with a medical history that blew her away. She couldn't believe everything I went through and went back on medical history of 15 years. She started testing that day and came back with conclusion I was suffering from multiple autoimmune diseases and had to start treatment immediately.
I have good days where I feel I can accomplish anything and other days I'm bedridden. Ive learned to take each day how it comes. Don't ever feel bad having to cancel on plans, wanting to stay in bed extra hour or take a day off work because you need to rest. Even superwoman needs a break sometimes.
I've been been through hell and back, multiple experimental drugs to keep pregnanies, my license being taking away, went through the ringer with family doctors and physians at hospitals not believing me. All I want to say is believe in yourself, fight, don't give up easily, take chances in everyday life. Everyday will be a fight, keep going, you got this.
Ladies you are strong & beautiful, don't let anyone push you around.
Tatiana was so incredible to shoot with again and showed me even with extra weight, back rash, shaved head, I was still beautiful and we need to accept what we have and worked so hard for. Every day is a battle, keep going, keep loving and accepting yourself.
Jaimee Love