MY DIAGNOSES WITH SJOGREN'S SYNDROME OR THE "UNKNOWN"

 Wow. Where to begin? I was diagnosed with Sjogern's Syndrome today April 1, 2022..."April Fool's?" Unfortunately not, but it is the beginning of my journey. I wanted to start a blog to document what I have been going through and any feedback, recommendations and advice are sincerely welcomed. 

I picked the word "Warrior" to go along with this disease because warrior means a person engaged in warfare, a soldier, a fighter. It means a person who shows or has shown great vigor or courage. These are qualities I look up to in others, and I want to take this diagnoses head on, give it a fight, and not let it run my life. 

I should start by introducing my beautiful or should I say handsome family. I have been married to my husband Jake since 2003. He is the rock of our family and our provider. He has been a State Farm Agent since 2007, and he is literally "Jake From State Farm." Together we have 3 boys. Elliott born in 2005, Oliver born in 2007, and Arnett born in 2014. Since we were dating we knew we wanted me to be a Stay at Home Mom. To me it is the most rewarding calling that I have. My family keeps me busy. Our oldest Elliott loves to write short stories, and is a life guard. Our middle Oliver is a rock star and plays the electric guitar in 2 bands. Our youngest is a baller and a gamer. He loves to play baseball, soccer and Minecraft. We are very involved in our Chruch, the Church of Jesus Christ of Latter Day Saints, and also the boy's schools and our local community. I say that I am a professional volunteer because I am always the Team Mom, Band Mom, or Classroom Mom. I love it, and helping and serving others brings me so much joy! 

So, here is how my story began with the "Unknown." For several years I had been in pain. And after having Covid (twice) I noticed the pain progressively got worse. Here are my symptoms: 

muscle pain, 

burning in my legs and arms, 

twitching of my muscles, 

tightness of muscles, 

tender points, 

very fatigued (all the time), 

numbness in legs and hands, 

tingling in legs and hands (like pins and needles)

dry eyes, 

dry mouth, 

dry skin, 

hoarseness or impaired voice (I sound like a smoker at times), 

and swollen lymph nodes

Fun right? Not! Like I said I hadn't been feeling good for a while and I felt like I was going crazy! Was I making this up, was I being a sissy? I was in pain and tired every day! I felt lazy for wanting to nap all the time, and selfish for having to take breaks from things and lay down. Well, I finally went to the doctor, and got a physical done, and bloodwork. At first my liver enzymes came back with high numbers, and the nurse from the doctor's office told me when she called to, "STOP drinking immediately!" Haha! I was so confused because I do NOT drink at all or smoke, and I think when I told her she truly didn't believe me! 😝 I told her I promise I didn't drink, and she told me I needed to come back in and talk to the doctor. So when I went back for my second appt my doctor wanted to do more bloodwork to check my liver, and do a liver and gallbladder ultrasound. She also wanted to test me for an auto immune disorder. Welllllllllll...guess what came back positive with all the markers for an auto immune disorder- that's right- THIS GIRL! My liver was good, but with the positive bloodwork for an auto immune disorder my doctor said I had to see a rheumatologist. And so after that I had to wait 6 weeks for my appointment. I didn't mind though because he was the best one around. 

April Fools Day is now officially the day of my diagnoses. I went to my doctor, and had the full check up, he asked me LOTS of questions, and checked all my joints, back, legs, arms, my fingers and toes. I felt very comfortable and I was hopeful he would be able to offer help. Thankfully he did. He said, "Well you have what's called Sjogren's Syndrome." He explained that it was a chronic auto immune disorder that was causing all of the symptoms I am having. He also told me it can be caused from a bad appendicitis. That blew my mind because in 2003 my appendix burst and I almost died! This was ALL making sense! The good news is that there is medicine to help it. The only downside is that it takes 6-12 weeks to take effect. He proscribed me with Hydroxychloroquine which is going to help with the inflammation. And then for the first two weeks I will be on Prednisone to help with the pain and inflammation. This is not just a take it for a while medicine- this will be a lifelong medication if it is working for me. My rheumatologist also recommended that I change to a gluten free lifestyle...wait what?! Ahhhh! No pizza, pasta or bread?! 😟 BUT I am going to try it, and my hubby is on board and going to do it with me. Thankfully nowadays it is easier to go gluten free with lots of healthy options. My next checkup appt will be in 8 weeks. Wish me luck as I start this lifelong journey, and as I am FINALLY out of the unknown!