Part 1: The Back Story
The short version goes something like this. Sept 3rd two years ago I broke out into a crazy rash, my skin was itching literally off, and I was running a 103.5 fever. According to the people in my life that love me that was unacceptable and I was all but dragged to the ER. Upon arriving they did blood work and other tests. All they could tell me was that my WBC was insanely high, my body had some sort of infection, but they couldn’t figure out what, and no amount of steroids would stop the itching. After a few rounds of IV antibiotics and meds to get my fever down, I was released with no answers. I had melanoma cut out two weeks before (that’s another story) so I called my dermatologist. He thought maybe I was having a reaction to the internal sutures. I got more steroids and sent on my way. Two weeks later I still had a rash, I was still itching, and my skin was literally falling off of my body in various places, I got more steroids. By November nothing had changed, so next stop allergist. We did ALL the testing! By the way, I’m allergic to pine, mountain cedar, and grass. NOT HELPFUL. What was helpful was him finding that my liver numbers were out of this world. Turns out that can cause itching. So after 3 mths of nonstop itching (and steroids that were making me a crazy person), I was on my way to the gastroenterologist.
I rang in 2017 feeling awful. Even today 2017 is affectionately referred to as the lost year. I had no energy, I was sick constantly (think flu-like body aches), I couldn’t really sleep due to the itching, and most days I barely survived. The gastro found the same alarming liver numbers and gave me my first diagnosis of Primary Biliary Cirrhosis. Excuse me? WHAT? Turns out with PBC you die in ten years or you get a new liver and then die about fifteen years after that. NO THANKS!! He ordered a liver biopsy, sono of my pancreas and gallbladder, and more blood work. He gave me some pills and a weird powder to flush out my liver. That at least stopped the itching for a little while. In February 2017 I had my biopsy and other tests. Everything came back normal. Great! It’s all Normal but my liver still isn’t functioning properly and now my lymph nodes are huge. Hi Everyone, I’m sick, someone tell me WHY!! Enter the most fantastic internal medicine Dr on the planet.
I started seeing him in March right after I slept for literally the whole week of spring break 2017. He kept my PBC diagnosis, as it was the only thing that made sense, even though it really didn’t, but at the time there was no other answer. Then we started all the cancer testing, did MRIs, CT Scans, and monthly blood work. He was testing and checking body systems that I didn’t even know existed. By June 2017 we still had no answers and he was referring me to the Mayo Clinic in Minnesota. In July I found out that they couldn’t get me in until Aug, the exact same week that I started back to school, I was devastated and that's when I broke. Emotionally I was done, mentally I had decided that maybe I was just crazy, but physically my body was barely functioning. I went to work, I came home, I zombie around the kitchen cooking dinner and once the kids were in bed I collapsed. That was the routine EVERY. SINGLE. DAY. I had been sick for 7 mths. How was it possible that no one could tell me why? I called the Dr and told him that the Mayo Clinic was out the question. He had me come into the office the second week of August and watched me break down. He sat silently as I ugly cried and then he said, “you aren’t crazy and I won’t stop until we figure this out”. Thank God for him! Thank God that the very small circle of people that knew what I was going through and surrounded me with love and support. They lied to me about looking fine and told me that everything was going to be okay even though we all knew that might not be the case. They were patient on the days that I was NOT lovable and NOT very kind. I will honestly never be able to repay them.
In September almost exactly a year later we got our big break! My Dr. ran a full autoimmune panel, we had done the big 2 (RA and Lupus) a few times, but never a full panel, and that’s when we got a few hits. He suggested I see a rheumatologist as soon as possible. As soon as possible in the Rheumy world meant that I would be waiting until the middle of November but I was waiting with hope. My rheumatologist has basically hit saint status in my book. On my first visit she reviewed all my records, she wouldn’t rule out the PBC, but she also saw so much more. She ordered more blood work and told me she would see me back in two weeks. Two weeks later, aka 15 mths later, it all started making sense. My B12 number was 142, she said it’s the lowest she has ever seen a B12 number and the person still be functioning at all. Below 400 you start to show signs of a deficit and below 200 your body starts shutting down. My Sjogren’s panel was also abnormal and there were other antiantibodies that were coming up in my blood work. By February of, 2018 we got to officially rule out PBC and we had a full AI diagnosis.
Part 2: The Official Diagnoses
Diagnosis 1: Pernicious Anemia – My body killed all the cells that absorb B12, those won’t ever come back, so I’ll be on shots for the rest of forever. For the first 3 months, it was weekly. Now I’m supposed to get a shot every 15 days, but lately, we have been pushing it to about a month, and I’m doing pretty okay with it!
Diagnosis 2: Sjogren’s (Show Grins) syndrome – Honestly, I was just trying to be like Venus Williams and decided that getting the same AI disorder would be easier than going pro in Tennis! Turns out I have more respect for her as a human than ever before, she is my personal hero, but I’ll get back to that later. Sjogren’s is a bitch (excuse my language). My particular brand of Sjogren’s impacts my lymphatic system so my nodes are often painful and swollen (yes I brush). Then there are the general things that Sjogren’s impacts. Like killing all the moisture-producing glands in my body, impacting my liver and lungs, and making my muscles ache like I have the flu and joints feel like they were set on fire. My parotid glands are always swollen and painful (those are the ones right below your ears) but I’m pretty used to it at this point. I also lose my regular voice at night and early in the morning.
Diagnosis 3: Autoimmune Urticaria – Basically I’m allergic to myself. Not really, but my body does overproduce an antibody that triggers the release of histamines. Then I break out in hives and I itch and it’s awful. Luckily, I’m down to only having these flare-ups every few months, or when I get really stressed, or when I don’t eat healthily, or when I forget to take my H1 Histamine blockers. PS mine is not connected to an underlying thyroid disorder. My thyroid is the one thing that still works like a champ!
Part 3: The New Normal
Finding my new normal has been the hardest part of this journey. I am a pretty high energy person and right up until all of this went down I was running 3-4 miles a day like it was a Sunday stroll. I ran to live and I lived to run. It’s been hard to accept that running is not and won’t be a part of my new life. It’s too hard on my joints and isn’t on the approved activity list. I take medicine every day. A wonderful medicine, that makes me really nauseous if I don’t take it at the right time, but I can honestly say that it has given me a lot of my life back. I have to watch what I eat. Okay, not all the time because I am a real big fan of food, but most of the time. Dairy is hard on my joints and causes inflammation, so I try to be careful with the amount I consume. I ate a lot of Queso last week and let me tell you the fire in my joints is almost worth it…almost. Spun sugar (think Skittles, Mike & Ike, and that sort of thing) often trigger a flare up so I limit those as often as I can. There are other things too but I won’t lay them all out.
The toughest part of my new normal is accepting and admitting that I can’t do it all. Knowing that I have to plan out my energy a week at a time. Understanding that if I do this I may not have the energy to do that. Realizing that Sjogren’s doesn’t care what you have on your agenda when it says sit down you sit down. That’s why Venus is my personal hero. Somedays I can barely teach school and raise kids simultaneously, and yet she is still kicking all kinds of butt on the tennis court. Though in my defense I don’t have even one trainer or chef, let alone a whole team keeping me together, and I’m still over here killing it. My plans are more spontaneous nowadays. On days I wake up feeling good I try to do all the things. I always hope for a wave of several at a time but often they are more sporadic. Sjogren’s usually says you can have this morning, but not this afternoon, you can have Friday night, but you can’t have Saturday too. Sometimes, I say screw all of this, and do what I want anyway! I string a bunch of late nights together and do several activities in a row. I do all the cleaning and shopping and power through knowing that it is a terrible idea. Believe me, I pay for it! I pay a really high price, but I would rather live life feeling like crap than to sit home and watch it pass me by.
Having the kids, two jobs that I love, and friends that make me get up and go, but are also okay with saying sit yourself down, helps a lot. I still play volleyball, basketball, and on occasion a set of tennis. I go walking a lot to keep my joints moving. I tried yoga but I’m the worst! I put first things first and work really hard to not stress about little stuff (aka my crazy messy house). While I have to take life a little bit slower than I used to I am not and never will be defined by my ill-mannered immune system. I will also never be able to thank my circle. I mentioned them before but they really have no idea how much they have done for me. They love me when I am at my worst. They accept my bad days for what they are. They get my sense of humor and throw their own jokes around. We don’t take all of this as serious as we probably should but believe me I wouldn’t have it any other way.
That being said thank you for understanding if I cancel plans. Thanks for getting it if I don’t text back or answer the phone (let’s be real those were issues before all this started). Thanks for remembering that I’m still 100% me!
PS...My Rheumatologist has got my back from a diet and medication standpoint. No amount of "fixing my gut" or natural remedies are going to fix this!
PS...My Rheumatologist has got my back from a diet and medication standpoint. No amount of "fixing my gut" or natural remedies are going to fix this!
