About that thing...
I've been debating as to whether or not I should post this for the past several weeks. Actually, the past 9 years. I remember the first time I heard the buzz word "autoimmune" when I was in high-school. My friend Jeannie's sister had Lupus. She was in the advanced stages of it at a very young age and was in a constant state of illness whenever I saw her. She LOOKED sick. When you talked to her, you knew something was wrong. Fast forward to another friend of mine's mother. She had Fibromyalgia. And dammit, she was going to let you know the minute you met her. Nothing looked wrong with her, and to be honest, I thought all she did was complain and carry on.
In my 30's, one of my best friends confided in me one night that she, too, had Fibro. I was honestly shocked and astonished by this, because you would have NEVER known. She fought her battle quietly, stoically, and you'd never know that hidden behind one of her kitchen cabinets was enough prescription bottles to rival a CVS. I remember commending her on her attitude, comparing her to the woman I had met several years prior. It was almost as if that woman introduced herself to everyone she met AS her disease, and I remember thinking man, if I ever have one of those auto-immune thingamajigs, I will NEVER be the one who identifies with it the minute a person is introduced to me.
Fast forward to May 2010. My father in law had just passed away. My husband was not taking it well at all, and frankly, I was exhausted. I was often the verbal 'brunt' of my father in law's discomfort, the one who took him to all of his oncology appointments, while juggling 4 small children with a husband who was working in Chicago more than he was home at the time. I was tired. I came down with a fever a few weeks after he passed and had flu-like symptoms- joint pain, body aches, a weird rash... I assumed I had the flu. A few weeks later, it came back. It would come for a day or two, then pass. My mother found an article about 'caretakers' syndrome', and it all made sense to me. Surely, this was what it was. I took the time and invested in self care, chiropractic, a trip to Hawaii, and I assumed I was in the clear once things calmed down.
A few years later, the 'mystery' fevers would still come and go. I thought ok, this must be because I'm in bad shape. I started watching what I ate, and within 22 months of setting some hefty goals, I was in the best shape of my life in 2012. I had lost almost 100 lbs all by cutting sugar/carbs and working out 3-4 times a week. I was happy, healthy, and the kids were thriving. In the winter of 2012 I got pregnant with my 5th child. After I gave birth to her in July of 2013, I was at my lowest body weight I had been in years. Nursing, juggling her four older siblings everywhere, I felt great. Then one day in 2014 I passed out due to low iron. I had struggled with low iron my entire life, but after she was born, it seemed to get worse. I mean, after all, I was 37. I was 'getting older'. Iron supplements weren't working because they wouldn't 'bind' to my red blood cells, but eventually, I was better.
UNTIL the 'mystery fevers' came back in May of 2016. This time, I would have heart palpitations with them. I saw a wonderful, kind, and compassionate cardiologist who assured me I wasn't going to croak from this, and she put me on medicine to control what is called "PVC". Eventually, the medicine worked and I haven't had symptoms since. But the mystery fevers, joint pain, and body aches continued every couple of months. In October of 2016, I was in a wrist brace for 3 weeks and had to stop working because the pain was so bad. I had an MRI because my doctor was certain I had torn something, but alas, nothing. No explanation. It just literally went away one day after a steroid shot and a brace for a few weeks.
In 2018, my doctor finally said she wanted to run some panels for autoimmune disease. Everything led toward some type of it, but there was one test, my ANA (anti-nuclear antibodies), that would come back negative every time. It was never enough. Here, have some anti-inflammatories. Some more steroids. That should help. And it did....until another 'mystery fever' episode would return. In October 2019, I woke up one morning, prepared to take my little one to school, and went straight to the doctor after I dropped her off. I could barely walk. I had a 101.4 fever, my knees were so stiff and sore that I couldn't hardly stand myself up, and my shoulder blades and fingers felt like they were on fire with a million hot needles piercing into them every time I touched something. Oh, and I was coughing up blood. Not enough to make me think I needed to rush to the ER, but hello, coughing blood is kind of... never ok. Okay, SOMETHING is wrong. She ran the panels again (this was probably the 8th-9th time I had them run at this point), and there it was. A positive ANA along with a slew of other abnormalities. She sat me down in her office and said it was probably time to see a rheumatologist. An appointment was made, for over TWO MONTHS later. I can't even tell you how frustrating this healthcare system is, but that's a whole different post.
I went to Florida with my best friend for a long weekend the week before my appointment. I can't tell you how much I looked forward to this trip, and low and behold, the day after we arrived, I had a 'flare'... an episode, whatever you want to call it. Mystery fever, coughing blood, severe join pain again especially in my knees. She was so gracious about my moving slow, my not feeling well, but I covered most of it up because I wanted to have a good time. When I got home that Sunday night, I collapsed on the couch and didn't move until maybe Tuesday morning. Finally, my appointment arrived. I have never seen a person take that much blood from me in one sitting. The coughing up blood is not typical for some disease unless it's a type of vascular auto-immunity which can be very dangerous, so she was very thorough. An X-ray also revealed that after several times of having pneumonia over the years (I'm unfortunately prone to it.. had it as an infant and it rears its ugly head 1-2 times a year), there was a spot on my lung that looked like it could be a small lung collapse, AKA permanent damage, otherwise known as interstitial lung disease.
The waiting was ridiculous. I want to say I waited 2-3 weeks for all the results to come back. There were several results to be noted, but most indicating was another positive ANA and a positive Lupus anticoagulant... which, if I'm honest, I don't even know what that is, lol. Still, the verdict was in: SLE. System Lupus Erethematosus. Otherwise known as simply, LUPUS. To be honest, as upsetting as it is to hear that you have a chronic illness, the diagnosis coming after 9 years was a relief because now maybe they would know how to treat it. Common symptoms of Lupus are: Joint pain, swelling, fever of over 100, hair loss, swollen ankles, extreme fatigue, arthritis, kidney and lung issues, skin rash/psoriasis issues, and blood issues such as anemia. The only symptom that I honestly do not have is the classic 'butterfly rash' on my face. Oh, and the verdict is still out on photosensitivity. I'll say this- I had a flare in October while in FL and if they try to take away my beach trips, I just... don't.... know. Ugh.
Thankfully, a follow-up CT and lung function test with a pulmonologist revealed that the spot must have been from the pneumonia and praise God for a clear lung CT with no irreversible damage... yet. However, I am highly susceptible to pneumonia, and have been for the last several years. The problem is, we don't know what tissues Lupus will attack, but at least now, we know what it is and how to (hopefully) prevent it.
It's taken quite an emotional, not to mention financial toll on me, especially these past 6 months or so. But as I continue to say, I have prayed my way through this point and as much as I hate the diagnosis, I'm grateful to finally have it.
So now that you have the facts, why am I revealing them to you when I said earlier that I really DO NOT want to be 'identified' as my disease? I absolutely don't want that, so I'm telling you, this was a tough decision. It comes on the heels of many hardships people I know are facing. Most recently, one of our kids on my daughter's dance team found out she has bone cancer. Then a tornado ripped through our town, causing unimaginable damage and shut down a ton of businesses, schools, etc. And now, we are being inundated with everything corona virus. Many other people I know are facing issues dealing with themselves or their loved ones. How does my situation even compare? The easiest answer: it DOESN'T. However, it's part of my daily life now and I have to face it, and doing it alone has been.. isolating, at best. I'm a people person... y'all know that. I don't want pity, or even sympathy. But what I do need is understanding. I've been on a medicine called Plaquenil for a few weeks and from what I hear, it takes a while to build up in your system. I'm hopeful that it will help, but a few weeks ago (Monday the 24th) I had one of the worst flare-ups I've had to date. I could barely walk again, and ended up in bed for a day and a half.
I need you to read this...and read it again:
PAIN ISN'T ALWAYS VISIBLE.
The most frustrating part about this is that I don't 'look' like there's anything wrong with me. My children and family, if I'm honest, have had a really hard time 'getting it'. I can only put on a brave face for so long when I'm experiencing a flare up. I realized how insensitive I had been to people I know, all around me, who suffer from auto-immune conditions. It's so easy to roll your eyes and wonder what the freaking problem is. So I guess that's why I'm here. To try to bring a bit of awareness to my own situation, but also in the hopes that it might help someone else.
I guess the last thing I ask is that you pray for me, if you will. I don't want my kids to see their mom struggle. I don't want to have to say no to things because I'm having a flare or am not feeling well enough to go out and enjoy them. I don't want to go to a shoot and feel like shit. I don't want to be behind on work... on life. I don't want people to look at me and think 'geez, what's wrong with HER?' And most recently, I don't want to worry myself sick about this coronavirus because I'm at a higher risk for pneumonia and complications. My family doesn't understand me, and again, it's isolating. Exhausting. I'm not gonna lie. And I know it could always be much, much worse, so I feel very blessed that they finally figured it out.
I'll leave you with this for now:
This struck me, and when I heard it on TV the other night, it was honestly the catalyst for writing to you today:
"We give children stickers and lollipops after they visit the doctor. We congratulate them for putting on a brave face. Needles in their arm, strangers inspecting their bodies for signs of illness... "Here's some candy, kid. Try to smile."
We do it to adults, too. It's considered impolite to discuss your diagnosis at a dinner party. You're supposed to smile, make small talk, suck on the invisible lollipop....because for some reason, someone decided a long time ago, naming pain is impolite.
That hiding it, and hiding from it, makes more sense.
It's a lie.
A lie that both comforts, and destroys us." ~Meredith Grey