Sharing something personal and raw is scary. Writing about things that you hesitate to even talk about is powerful. My health isn’t something I ever thought I’d be blogging about, so bear with me. Within the past week, I’ve chatted with two sweet friends who are beautiful and young and full of life. Both are mothers, wives, active community members, and friends to many. Both of these precious women are dealing with health issues of their own. Their journeys are different than mine, but it really struck a nerve to realize just how frequent these unexplained illnesses are, especially in otherwise healthy 30-something women. That realization is what prompted me to write about my journey. I’ve been holding my thoughts close, stewing over them for months. It’s shameful to be ill. It’s embarrassing to admit that you don’t feel well on a regular basis. There’s a societal stigma that anyone with a chronic illness is lazy, unwilling to get better. That they lack the drive or motivation or will power to push through. One look at our social media feeds proves that what we’re posting is only the good. The happy. The easy. Sickness is hard. Fear is hard. If my writing does nothing other than show we can be real, it’s worth putting my pride aside.
The photos I post on social media. Smiles, makeup on, hair fixed…I look normal.
My reality–falling asleep the second I’m home, not bothering to take off my makeup or wash my face. Because most of my days are spent feeling horrible, this is how you’ll usually find me if I’m at home. In bed, sleeping the days away. I think that hurts my heart more than anything…knowing what all I’m missing.
My journey began around the first of this year. In January, I realized I just wasn’t feeling well. With kids, germs and colds are nothing surprising, so I didn’t think much about it. But my simple cold just got worse and worse until I ended up in the hospital, diagnosed with bilateral pneumonia (which, looking back, may or may not have been a correct diagnosis. Probably not.). My cough was relentless. My breathing was horrible and I’d be so short of breath that passing out became something fairly normal for me. It took several months to be referred to a pulmonologist at UNC, who quickly ordered a battery of tests. Soon after, I was diagnosed with my first autoimmune disease–an interstital lung disease that causes inflammation in the lungs, making it difficult to breath like a regular person. Treatments? Not many options, other than long term steroid use, which seems even worse than the symptoms to me. I rely on an inhaler and nebulizer when things get bad. There seems to be no rhyme nor reason for when a flare up will occur. I’ve missed more things that I can count–games, recitals, competitions, date nights, trips…the list seems endless.
Fast forward a couple of months to July. I noticed that I was having some eye pain and blurred vision. I’ve never worn glasses or contacts and figured it was probably my turn for that. I scheduled a visit with the opthamologist and didn’t think much about it, until he walked into the exam room with a look of pity on his face. He asked me a few questions about any autoimmune issues in my history and after filling him in, he quickly diagnosed a brand new autoimmune disease, optic neuritis. This super fun one involves an inflammation that damages the optic nerve and the treatment plan involves steroids administered by IV as an inpatient. The steroids don’t cure it, but can shorten the duration of the pain, which by this time was pretty severe. I opted out because…well, I have kids and a husband and things to do and it wasn’t a “good time” to be in the hospital. When is?
Moving right along to just a couple of weeks ago and I received my THIRD autoimmune disease diagnosis in a span of about 6 months. Me, a normally healthy wife and mama, who had never been sidelined by anything other than a cold or the flu…normal stuff. Now I’m anything but normal. I now know I have Hashimoto’s Disease, an autoimmune disease in which your immune system attacks your thyroid. Oh, it also makes you feel horrible. Really horrible. Can’t get out of bed horrible.
Learning about these autoimmune diseases has been a shock, to say the least. There’s so much I don’t know, so much I don’t understand, but I’m seeing quickly how important it is to be your own advocate. In this case, knowledge IS power, so the more I can learn and understand, the more likely I am to get appropriate treatment plans from my doctors. Doctors. Plural. Again, not something I ever thought I’d say. I’m now seeing my general practitioner, an opthamologist, a pulmonologist, and I have a referral to a hematologist because my blood work is not even close to normal. My white blood cells, platelets, and neutrophils are THROUGH THE ROOF. My C-Reactive Protein, which is a marker for inflammation in the body, is off the charts high. All of this leads me to believe that there HAS to be a singular cause for all of this. I don’t know what it is yet, but I’m praying so hard that my doctors can work together to find the root cause and put me back together.
I’m not a sickly person. Or I wasn’t. But now I struggle every single day. Some days are better than others, but not many are truly good. If you look at my Instagram feed, or my snaps, or really any of my social media posts, things probably seem pretty great. Smiling kids. Happy husband. Interesting views. But isn’t that what social media is about? Posting the good? Maybe it shouldn’t be only about that. Maybe being real isn’t a bad thing. And this is my real right now. I hope it isn’t my future. I pray I get answers and begin getting better. But for now, this is me. And mostly I feel like I’m falling apart.