Thank you so much for finding your way to me! I have had a lot to say for a while now, but the timing never seemed quite right to start a blog, until today! I am a chronic illness warrior and honestly, I have felt like garbage for the past several years. I guess I was waiting for that to change, but it doesn’t look like I’ll be so lucky. I was diagnosed with fibromyalgia in the summer of 2014. I’d been having crazy intense body pains for several months and, once I had a diagnosis, my doctor started me on Lyrica. Within a few weeks, I noticed a marked difference in how I felt. It was great, for about a month and a half. Then the joint pains started, and would not go away, no matter what I did. I went back to my doctor and he ran some more blood-work. My worst fears were officially confirmed. I had rheumatoid arthritis. My mom had RA, and my baby sister was diagnosed with lupus about a year earlier.
I was scheduled to see the only rheumatologist in our area. He immediately started me on methotrexate, a chemotherapy pill, once a week. After a few months of no improvement, I was switched to Arava. My hair fell out in clumps and my blood pressure was pretty high, so I came off of that. I had to take a cholesterol medication to pull it out of my system. Otherwise, it can stay in the body for up to two years, wreaking havoc the whole time. My next medication adventure was Humira. Now, I am pretty terrified of needles and this is a self-injectible pen. Much easier than a syringe lol, but still very daunting. Eventually, I screwed up enough courage to give myself the shot, but it took A LOT. I mean, A LOT. After another few months, it was clear that this medication wasn’t doing a thing … again. This time, I was put on the infusion Rituxan, another chemotherapy drug. It’s a six-hour infusion, so it was an all day adventure. Benadryl is added to the IV, to help stave off any side effects. After several months, it was determined that this medication was having no effect. In the span of two years, I was on four medications and they all failed. Not very encouraging, to be honest.
Also not encouraging were my lab results. There’s an RA specific blood panel called Vectra DA. It measures the biomarkers unique to RA, to give the doctor an idea of how the disease is progressing, or if you are in remission. (You can find out more about this test here: https://vectrada.com/ ) It is scored 0-100, with 100 being the worst. 1-29 is low disease activity, 30-44 is moderate and 45-100 is severe. My first test result was 63. A few months after the test, my rheumy told me he keeps my file on his desk at all times, so he can constantly monitor what’s going on. He said my Vectra score was one of the highest he’s ever seen. My second score was even higher, at 66. I’ve had to be evaluated for leukemia, because my white count was high enough to make my family doctor very nervous. I’ve had liver biopsies for random masses in my liver (more on that in another blog). Both biopsies were negative for cancer, but my liver panel continues to be weird. Weird lab results are my normal lol
It’s been almost three years now, since my diagnosis. I’m not on any meds for my RA, currently, and I think I’m okay with that right now. My pain is well managed, most days. Low dose prednisone gives me enough energy to do what I need to do, most days. My fibromyalgia is well controlled, most days. Haha, see the pattern? Everything is “most days”. If I work in my garden, I will be down for at least two days. Even working in ten minute spurts, with 20-30 minute breaks. It makes for a long,drawn out day in the garden, but that’s how it has to be. Otherwise, I may be down for a week or more.
Through all of this, I have learned something important. When I look good, I feel good. Getting up in the morning, washing my face, moisturizing, and putting on some makeup (even though I will be couch surfing all day lol) has made an enormous impact on my emotional well-being. I can actually trick my brain into thinking that I feel good, and it really works! Fake it ’til you make it has become a daily mantra for me. All of that long-winded backstory was to let you know that I do understand. I have been there. Heck, I am STILL there. I REFUSE to allow these diseases and illnesses to rob me of my life, my joy, my dreams. That being said, I want to help you all look good and feel good, too! I will be talking about various diet, beauty and makeup topics, with hauls, unboxings and reviews of different products. I hope you will join me on this journey. I think we all need a partner sometimes, and I will gladly be yours!