To say this week has been rough would be an understatement.
Last Friday I went and saw the dermatologist, and he removed 4 moles, as well as went over some new-to-me skin care directions. That was fine, and thankfully everything came back benign. Praise Jesus. But afterwards the spots were becoming more and more bothersome, which led me to do a little research. What I found is that people with Lupus are not only more susceptible to infections, but also that infections play a big role in bringing on flares. Had I known this, I probably would have avoided seeing the dermatologist even longer for the rest of my life. Mostly because I’d been avoiding it for about 10 years already, and I really would had taken any other excuses to continue doing so.
Then over the weekend and during the beginning of the week I was feeling pretty fatigued. Nothing that was totally game stopping, but enough to where I was weary that something may be around the corner. At my mom’s group Monday morning I had the ladies there pray for me, for healing and for protection against another debilitating flare up, because I was starting to feel off. By Tuesday afternoon I was really not doing great. I asked Kevin to grab me some lunch on his way home, hoping that if I ate something more significant than what I had the energy to prepare, I would be fine. Now this is where it starts to get blurry. I laid down to rest while the kids were asleep, and I remember waking up to eat and then promptly going back to bed. I was freezing, and when realizing that I probably shouldn’t be cold while under the covers in sweats and a hoodie, I found a thermometer and started taking my temp. Yep. I was officially running a fever. I know Makaila was awake by this time, and I’m not sure what Cohen was doing (that sounds bad, I know, but I assure you my husband had taken control here) so I decided I was SO cold, the only thing that would suffice was a hot shower. Turns out that was a really bad decision.
After what could have only been a few minutes in the shower, I felt far too weak to stand, so I sat down with my head rested against the wall. I was quickly becoming nauseated, and I remember just staring at Makaila’s toys, sprawled about the shower floor, trying to decide which one would be best at containing my vomint. My choices were a doll’s cup, a stacking cup, and a shovel. This couldn’t happen. I started pep talking myself. I couldn’t actually be this sick- I was simply being a drama queen. But when I became aware of the fact that I had been motionless on the ground having this debating with myself for at least 15 minutes, I started to get nervous. That’s probably when the pride kicked in and I forced myself to stand up, so I could wash my hair. Also a bad decision. I was so dizzy I felt like my head was going to explode, and having had just fainted in one of my best friend’s weddings back in April (real classy, I know) I knew not to push the boundaries. I had to get out of the hot shower to lay down, and quick. I didn’t have time to turn off the water or hardly take one step out before I gently, and purposefully, collapsed to the ground. I couldn’t make it to my bed; it was way too far.
I laid there and prayed that Kevin would walk into the bathroom and help me. I didn’t have the energy to call him. I’m not even sure how long I was there before he came in. Not that I had lost consciousness, but because time felt like it was standing still. When he finally came in and saw me though, he yelled at me. He sounded angry, but I knew he wasn’t. He was scared. And in as few words as possible, I let him know I was fine, I just needed help into bed.
I used the minuscule amount of energy I had to text a few friends to keep me in their prayers. It had only been a few hours since I started feeling gross, and it was looking like a trip to the ER was next in line. I had for the most part felt fine that morning, and now everything seemed to be spiraling out of control. I was still weak and dizzy, and my fever was now about 102. I took some Ibuprofen and went to sleep, but it wasn’t restful. I waking up about every 45 minutes, checking my temperature each time. 102.7, 102.1, 102.5. My plan was to alternate Tylenol and ibuprofen every four hours, and it had only been two hours when it obviously to me that the Ibuprofen was doing nothing. I needed this fever to come down. I kept telling myself that if this was going to be part of my life, we needed to learn how to handle it from home. We couldn’t go to the hospital every time I was getting fevers that weren’t coming down with medication. I couldn’t. Kevin made me soup and gave me water and Gatorade, and I forced them both down and went back to bed.
About an hour after I dosed with Tylenol, I woke up with a temp of 103.5. Kevin told me it was time to go to the ER, and I pleaded with him to let me try to strip the covers from myself first and see what happened. He complied, and brought me cold rags to put basically all over my body. At 1AM I woke up in a bed that was completely soaked, but I couldn’t have cared less because my temp was down to 99.5. (I know I said this was all blurry, and I swear I’m not lying. The only reason I know these details is because of text message updates that my friends were demanding.) The weird thing was that my face was feeling really tingly, so I went to look in the mirror, and I discovered that my lip and right eye had become really swollen. Like, looks-like-she-had-a-botched-up-Botox-procedure, swollen. Perfect. The only thing I could rationalize was that it was a reaction to the Tylenol, since everything else I had taken or eaten was pretty much part of my day-to-day. Whatever. My fever was gone and that was what mattered the most… Until I woke up the next morning, with a fever of 103.5.
All day Wednesday I continued to waver between 101 and 103.5. I felt like death. Still in and out of sleep, not leaving my bed, but lucky enough to have had Kevin stay home to continue taking care of me and the kids. We have to learn to do this. We can handle this from home, I kept telling myself.
There were points where I was so far gone that I thought my name was Kansas Stables. I’m not even joking. I was “dreaming” (hallucinating? I’m not sure..) about my Facebook posts as this Kansas person. There were other times when I thought I was dying. I came to the conclusion that maybe God didn’t in fact want me to be suffering well, but instead to die gracefully. That could be the answer. BUT THEN, I realized that amongst the all over achy-ness of my whole body, there was a significant, very specific pain I was having. Oh crap. It wasn’t (or wasn’t just) my healing derm wounds making me sick. I had freaking Mastitis. Not only is that something that knocks a regular woman to the ground, but for someone with an over enthusiastic immune system, the constant high fevers and all over awfulness started to make sense.
The one amazing thing about this is that my OB, who totally has my back and is a fellow Lupine, called me in a prescription immediately after I phoned her office to explain my symptoms. Thank the Lord, because I really didn’t want to leave the house with a still-swollen face that gave off the impression I had gotten into a bar fight the night before. I started on some antibiotics that afternoon, and by 8 o’clock Wednesday evening my temp was FINALLY down to 100, and continued to decline until I was feeling so.much.better. It was over, and what may have been a longer and more difficult process because of it, we had successfully avoided the Emergency Room and I had recovered at home. Hallelujah.
By Thursday morning I actually felt like a real, functioning human again. I was scared that the antiboiotics or the infection (or both) would trigger a flare, but so far so good. And the thing about feeling good again is that I am 1,000x more grateful than I ever have been to get over a sickness. God is using Lupus to help me really experience my life. Maybe a big piece in that is now I have two amazing, little extensions of my husband and myself that I get to hang out with everyday. Being near-unconscious made me feel like I literally lost 2 days of my life, but worse than that, I felt like I lost 2 days of my kids’ lives. Of our family’s life.
Snuggling my son and actually being present while I held him and he stared into my eyes. Watching my fantastically spirited daughter as she laughed and sang her heart out over breakfast. Experiencing these things Thursday morning made me grieve the fact that I hadn’t witnessed them in 48 hours, but then it made me really rejoice that I was able to soak up our moments together again. And to top it off, I came to with a new appreciation of my amazingly caring, compassionate, and rock star of a husband, who took care of all 3 of us while I was down for the count. As if he doesn’t have enough on his plate already! While taking all of this in, it overwhelmed me. I am so grateful. Imagining what it would be like to be mad at my body for turning against me, or angry at God for my disease has made me become ever so grateful that instead Jesus is gracious enough to be teaching me how to be appreciate life in the midst of my sickness. Talk about faithfulness. Now as I’m learning how to deal with a life with Lupus, I’m praying that this is the lesson I keep closest to my heart.
Oh, my aunt has Lupus. 