It’s been three years almost to the day since I was diagnosed with PBC and Limited Scleroderma. September 5, 2018 my world as I knew it came crashing down around me. Every year I get very reminiscent about it and I spend lots of time thinking about my health journey so far, and how much further I’ve still got to go. This year, I think I’ll just tell my story. This may be a repeat for some of you that have been following me for awhile now, so I apologize in advance if you’ve already read my story here before.
I’d like to say that my health journey started with my initial diagnosis, but the truth is that there were warning signs for at least a year before I finally said something to a doctor. In hindsight, I would say that my journey began on a cold February morning in Las Vegas, Nevada. I was working as an administrative assistant at the time. We had a new manager a a staff meeting one morning. I had just come in from outside and even though we were in Las Vegas, it was still a very cold morning. My fingers were completely white and numb, and the new boss exclaims, “Oh my God, what’s wrong with your hands?” I was instantly embarrassed by her statement and to this day I still get embarrassed during a Raynaud’s attack because of that woman. These attacks continued for a year before I ever thought about saying something to a doctor. Before getting sick, I would almost never go to a doctor for any reason. I have always had really bad medical anxiety and just try to avoid them as much as possible.
Fast forward to March of 2018. I’ve been having these attacks for 13 months now. I had recently moved from Las Vegas, Nevada to the Florida panhandle. I was working out a lot. I had lost over 100 pounds from walking and was training for a 5k race with my baby brother, Jesse. We were having the time of our lives training together, spending some real quality time together… Gods how I miss that! Anyways… I got sick at the beginning of March. I got bronchitis and it was so bad that I had to go to the hospital since I didn’t yet have a primary care physician in the area. The hospital diagnosed and treated the bronchitis, but recommended I follow up with a primary care physician, so that’s exactly what I did.
When I met with the new doctor, my husband had the genius idea to bring pictures on my cell phone of what my fingers look like during an attack because it literally never happens when you’re at the doctor’s office for a visit. The doctor took one look at the pictures and says, “Oh! That’s Raynaud’s! I’ve only seen that three times in my career!” He said that it’s probably nothing to worry about, but he took some blood to run labs and told me to just keep warm. I didn’t think anything else about it until I got a call a couple of weeks later saying that I needed to come in and discuss the results. I don’t know why, but I decided that on that day I was going to go all by myself to the doctor’s office. What an epic mistake that was! When the doctor came in he told me that my ANA (anti-nuclear antibodies) was extremely high at 1:1280 which means that I had an autoimmune disease, although he was unsure of which one I had. He referred me to a rheumatologist for further diagnosis and wished me the best. That was it.
I finally saw the rheumatologist in July of 2018. My first appointment he took a truckload of blood for various autoimmune diseases, diagnosed me with diffuse fibromyalgia and started me on some medications for that, and scheduled a follow-up appointment in September. Well, when I went back to him in September, our meeting had a very different undertone to it. The tension was so thick you could cut it with a knife. Dr. Martin diagnosed me with Limited Scleroderma and Primary Biliary Cholangitis (PBC). I didn’t take him seriously enough I guess, because his next words were, “Mrs. Perrine, I don’t think you understand what I’m telling you. You have two very different, very serious diseases going on. You will need a new liver or die within ten years!” I was in a state of shock. The only thing that I remember saying is, “How do I have a liver disease when I’ve never even been a drinker?” It didn’t sink in right away that there are many liver diseases that have nothing to do with alcohol. I left his office scared out of my mind, fighting back tears, asking my husband what are we going to do now? Three years later, and I’m just now starting to wrap my head around the reality of being so sick, so young.
The first year after diagnosis was the worst one for me so far. I went through Hell dealing with all of the various symptoms and side effects from all of the medications that I was immediately put on. In addition to that, I was dealing with crippling depression and anxiety. I was grieving the life that I thought we would have together. I prepared my children for the worst, just in case I did get too sick too fast, I wanted them to know what was going on from Day 1. I didn’t want them to be angry for me hiding it from them. We went with honesty from the beginning of this and I’ve never regretted that decision. I’ve kept them informed and involved in every step of this health journey. We always say that we’re in this together.
Now that three years have passed, my perspective on this journey and my life has changed quite a bit. I spent the last year getting all of the tests and scans that I had been avoiding for the first two years after diagnosis. My scans, tests and even liver biopsy all came out better than expected. In fact, my fibroscan was so good that my gastroenterologist didn’t even believe that I had PBC until the biopsy confirmed it. I no longer live my life believing that I’ll be dead in my 40’s, like the first doctor said to me. I baby my liver in the hopes that we’ll have a long life together. And I try to live my life to the fullest no matter what. I’d like to say that being positive helps, but the truth is that I struggle to stay positive most days. I have a great team here at home that try to keep my spirits up everyday, though. I’d be so lost without them by my side. This journey comes with its fair share of ups and downs, there is no denying that, but as long as I have Michael and my kids on my side, I won’t need anything else.