Read Me First: Catching You Up
Hi to all of my friends who I miss so so much! All of you have been so sweet to check in with me over the past few weeks. Your flowers, texts, and FaceTimes have lifted my spirits more than you know. I wanted to start a little blog to keep all of you updated with the latest news on my health and create a spot for me to share the knowledge I am gaining about autoimmunity, diet, clean living, and how it affects our bodies. I’ve learned so much about myself and my body through all of this and want to share some of that knowledge with you too!
This post will be longer than most— we have a lot of catching up to do, but I will try to post shorter and more frequent updates as I know more. Not asking or needing your sympathy… just prayers. This is not my page to throw a pity party. I have received a lot of texts asking how I am and it’s easier to keep you posted in one spot.
Looking back my symptoms started in 2017. Things began with frequent urination, a 20 lb sudden weight loss, extreme fatigue, suspected food sensitivities, trouble sleeping, and more recently, fever, hair loss, joint pain, tinnitus (ringing in the ears), crazy brain fog, and chest pain and tightness.
All of this led up to my first autoimmune flare, which I believe started brewing at the end of December. The week before Christmas, I started to feel like I had mono (which I’ve had before). I assumed it was just a cold or I was run down from finals week, deb parties, etc. When Christmas came around, I was so fatigued that I streamed Christmas Eve church in my bed and cried about missing out on my favorite holiday.
I started feeling a little better and headed off to Telluride in early January, but again, I started to not feel well. I started to get horrible headaches, alcohol sounded disgusting (even wine…I know), I couldn’t stay out past 10:00 pm, and skiing wore me out like never before. And when I say I couldn’t stay out past 10:00, I mean I literally had no choice but to put myself in bed at 10:00. The fatigue that I felt was not something I could push through. Towards the end of the trip, I started to get ringing in my right ear, which I still have today. All of this I originally attributed to altitude sickness.
One again, I pushed through and headed straight to Denver to visit Robbie for a week. I remember texting him on the flight from Telluride warning him that I was so tired and felt sick, but was still moving forward with the trip. I started to feel a little better after some rest in Denver and throughout my week at home before heading back to Austin for the Spring semester.
Flash forward to my birthday, January 24th. I was still so tired, still had that horrible headache, and my tinnitus was miserable. I call it my little chirping birdie now. We are not friends!!! Truthfully, I didn’t want to go out on my birthday the fatigue was hitting me so hard. Of course I went out because it was my birthday and that’s lame to not go out on your birthday, but I was absolutely spent the next day.
This was when I really started to feel like something was wrong. It was not just tiredness that I was feeling. This was fatigue. The kind that keeps you in bed all day and you have no choice in the matter. I couldn’t get out of bed in the morning and when I could, I didn’t have the energy to make my bed, run errands, or workout. I tried to go on a run and couldn’t even run a mile. I eventually started trading in my workout classes for naps. For those of you who know me well, you know that this is not normal Gracie.
My diagnosis with the flu at the end of January is what really sent me into my first flare. After 3 weeks of a 99.5-100 fever, two visits to Medspring telling me that I just had caught another virus, I finally requested bloodwork at UT. My results showed a high ANA (1:640), which is a strong sign of an autoimmune disease. An ANA test detects the presence antinuclear antibodies (produced when your immune system fails to distinguish between bad bacteria and your own tissues, in the blood. I’ll describe the medical side of all of this in the next post. 2-3 weeks of more blood work and testing led me to see an integrative doctor in Austin, Dr. Bedillion, who ran more blood tests and found the positive Sjogrens antibody. From there, it was on to a rheumatologist in Austin who gave me no answers, ran some blood tests and found nothing new. I’m also currently working with a functional medicine doctor in Fort Worth.
We are still searching...
The hardest thing about all of this is that autoimmune diseases are incredibly hard to diagnose and often times go undiagnosed completely. Every doctor I have seen has told me that my symptoms are beyond those that are caused by Sjogrens. There is no explanation for why I am dealing with this fatigue and pain and why my body is requiring so many steroids to feel good. Whatever other autoimmune diseases, metal toxins, etc. that are brewing in my body are still a mystery to us as of now.
I started on a high dosage of Prednisone 3 weeks ago and have been able to taper down to 22.5 mg as of today. My joint pain, headache, chest tightness, ear ringing, and fatigue are worse as I decrease my dosage, but steroids have horrible side-effects that I am trying to avoid. My symptoms are with me every day, but my steroids help me to feel more “normal”.
That’s really the hardest part about all of this for me. My body does not feel like my own and I cannot do the things that I once thought made me Gracie.
BUT with all of that being said, I am so lucky to be surrounded by a family who is doing everything they can to get me healthy. We are attacking this from all angles: sipping on my morning celery juice, drinking my bone broth, taking the right supplements (about 38 to be exact), new infrared sauna coming soon, all the while also getting in to see some of the best doctors and medical care. I’m blessed that God placed me in a family with the resources and medical connections to be making the quick progress that we have already. And hey— it looks like this is going to be a big part of my story and this is just beginning. I know God has a plan for me through all of this and strongly believe that He does not give us anything that we cannot handle.
LOVE all of you.
Prayer requests: Praying for an ANSWER. I don’t care what it is or what the outcome is, I just want to know what is making me sick. Then I can know how to work on getting better. In the meantime, thank God for the peace he has already given me throughout all of this and continue to give me peace, strength, and understanding in His power and plan.
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.—Philippians 4:6-7
More in the next post about Sjogrens, Autoimmune Diseases, how I got it, and what I can do about it.