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Flares.

A flare is defined as a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. The increase must be considered clinically significant by the assessor (physician or clinical researcher) and in most cases, should prompt the consideration of a change or an increase in treatment. {Lupus Foundation of America}


I've spend the last 3 months understanding what a flare look likes with my body. I come down with a low grade fever and my joints become stiff and painful, which is where it is the worst, for me. It feels like my joints are fused together and I've been outside in sub-zero temps for days they're so stiff.


The most tender areas are my hands, wrists, elbows, and low back, but my hips, knees, ankles and feet also are affected. I lose most of my strength in my hands and am overwhelmed with exhaustion (more than usual) so I spend most of the days in the thick of it in bed.


In order to manage it, I have to go into the doctor and do blood work as well as get x-rays done to see how dramatic of decline my joints made as well as know what to adjust in my medications. It's a real fun time.


To be completely honest, knowing now that I've had these flares in the past (they started about 4 years ago) and I just didn't realize it then, has been surreal; hard to grasp.


I lost a lot of weight, fast, when I was 23 right before I got married but I attributed it to "working out" (guys, I moved my body 6 times in 4 months ... I should not have lost weight, but I was young and dumb) and I was also told I was gluten intolerant {rules of which, I never followed}.


Then it was a hurricane of 3 back to back pregnancies in 32 months filled with tremendous hypertension, anemia, hemorrhaging after birth once, fevers for 6 consistent weeks leading up to birth, migraines, excessive hair loss, exhaustion, consistent hand pain for 3 years straight. The works, man. But I was constantly told it was due to pre-ecclampsia and "normal" pregnancy struggles.


It wasn't until I was a year postpartum with my youngest and was still struggling with hand pain, hair loss, unintentional weight loss, and exhaustion that made some red flags appear. But the final straw {for me} was when I dropped a light in Menards because I couldn't physically hold onto it in the check out line. I called my doctor the next day and that was the beginning of the long road to diagnosis.


Thankfully, I have a great team of doctors, which I know not everyone has - I've had my share of stinkers along the way, so I urge you to ask for a referral out to a different doctor. You are your biggest advocate and in a situation where you have to see those doctors {a lot} for the rest of your life (or, honestly, ever, for anything) you need to feel heard.


I also have an outstanding support system, that I also know not everyone has. But having dependable humans to count on when you experience your flares, or honestly ever, is something I have quickly learned is vital.


I pray, no matter what your struggle is, you have a support system. If you don't have a strong one physically around you, I pray you find comfort in God by knowing he is the strongest support you could ever hope for. He is there for you to lean on, to give all your worries. You aren't alone.


Much love,

Samantha

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