Tuesday, April 24, 2012

a mystery diagnosis

Today I was sad.

I realize that most of my posts on here tend to be in the way of inspirational, quirky and happy (it is in the title after all!) which is an accurate reflection of my mood and my life a majority of the time. But I also have other days. Days where something that life has thrown my way has me down, and no matter how many of my own lessons in strength, optimism and happiness I conjure to my mind, I remain in a bit of a funk. Today is one of those days.

I'm sorry if the following is not what some of you had hoped to read today. Maybe you came here for a laugh, or a new craft, or a silly life lesson I've been fixating on. These are the things I do love to share, and I promise I will get back to them shortly. But for now, today, on my sad day, I wanted to simply share with you why I'm in a funk. I wish I could say I want to tell this story to help someone or offer something of worth, but I think truly and honestly I want to share it just to be heard - to get these negative feelings out of the way to make room for more positive ones again. So feel free to read on, or don't, but please know that I'm about to let you in on a very personal, very unflattering side of my life the past month or so. And please forgive me for being a bit of a downer. It's not a side I'm particularly fond of, but it's a side nonetheless, and hence it has a right to be heard just the same. (I will also warn you, if you'd like to keep up the notion that I am attractive or desirable in any sense of the word, stop now because after reading this post it's quite possible you may never see me as those things again.)


Some of you may have noticed my cryptic reference in another post to a topsy turvy couple of weeks I've had of late. I promise it wasn't my intention to be all "I'm angsty but I'm not going to tell you why." I honestly just didn't have the time (or the impetus) until now to sit down and write what I knew would be a very long and more serious post. The truth is I've been struggling with a very unexpected health issue for the past month, and I haven't been particularly keen on telling many people about it.

I actually started writing the long, drawn out version of this story when I realized that it doesn't really matter how I got here; it only matters that I'm here now. So I'll spare you all the details and feelings of the past month and give you the gist of it instead. (Believe it or not, the following is the extremely abridged, but still ridiculously long, tale of my last month as a case fit for Mystery Diagnosis.)

Exactly one month ago today on March 25th, I arrived home from a weekend away in West Palm Beach to find tiny, light-colored bumps covering the entire surface of my arms and legs. What I originally thought to be a simple allergic reaction soon turned into something that I knew needed professional attention when those bumps became even more abundant over the course of the next three days. When I visited my dermatologist that first time, she was stunned. "I've never seen anything like it before." (For the record, not something you want to hear your doctor say.) I was poked and prodded that first visit, but was told that in all likelihood it would be a bacterial infection - something anyone could pick up from a towel or a set of sheets. The doctor took a swab from a few of the tiny bumps and sent it away for testing. I left the office relieved and feeling like I finally had a good idea of what could be causing this freak occurrence.

Days passed and each morning I woke up to a more severe version of my condition. The bumps were not only covering the entire surface of my limbs, reaching from my ankles to my hips and from my wrists to my shoulders, but now they were beginning to itch. It was all I could do every second of the day not to scratch my skin raw. Finally I received a call from the doctor's office letting me know about my test results. I fully anticipated a simple confirmation of the suspected bacterial infection, a quick prescription for antibiotics, and bottabing, bottaboom, finally this nightmare would be over. Instead? "Miss Winegeart, we've ruled out a bacterial infection. Can you come back in today at 4pm for another look?" This was Friday the 30th. It had only been five days, but it had seemed like the longest five days of my life.

Back to the doctor's office I went. I sat in my paper gown once again being poked an prodded, surrounded by looks of bewilderment. Two more doctors from the practice were called into my exam room to give a second opinion and what did I hear? "It's like nothing I've ever seen before..." (This phrase was beginning to get a bit old.) They traded diagnoses back and forth as they walked around me, and I started to feel like the bonus question on a med school pop quiz. They reasoned through my symptoms, explaining why I seemed like "a textbook case of x, but a contradiction because of y..." I heard every explanation under the sun but finally they all seemed to agree that my symptoms appeared "consistent with" (fancy term for "we're not positive but it's close to") a viral infection. (Apparently viruses can manifest themselves in a number of different ways in our bodies - including skin. Chicken pox for example is a virus.) The suspicious part was that I exhibited no other symptoms of viral infections that are common, like a fever or sore throat. The only way to check for that would be to do a skin biopsy and send it away for testing.

I had never had a biopsy before. I hate needles, and blood, and anything remotely resembling pain, so imagine my surprise as I sat there on the exam table being told that they'd need to cut a small spot from my skin to send away to a lab somewhere. I felt terrified. And alone. And frankly just so confused as to how I got myself into this situation. I held it together long enough for them to perform the very minor procedure, and I distracted myself easily enough by cracking jokes with the nurses. They told me they would call me the second they received the results, which would be in a few days. A few days?! I left the office, headed to my car in the parking lot, and the second I put the key in my ignition, I lost it.

The flood of emotions in that moment was more than I could handle. I wanted to think it was no big deal. I wanted to act like it was just a stupid skin thing. But that's not how it felt to me - it did feel like a big deal and it didn't fee like it was stupid. It felt scary. What was wrong with me? I was frustrated that I still had no answers. I was miserable because every moment I felt compelled to scratch my now raw and irritated arms and legs. I felt helpless. I felt ugly. I felt terrified.

That night, Jason knew how down I was feeling, so we decided to stay in and watch a movie. I'll never forget that night as we both sat there on the couch with me rubbing bags of ice cold water over my arms and legs (the three different itch relief prescriptions up until that point had been ineffective), and Jason looked over at me. "Babe, it's spreading to your neck." I sprung up and ran to our hallway mirror. Sure enough, small bumps had started to appear on my neck. They were barely noticeable, but in my head all I could think about was What if it reaches my face? Every feeling I had leading up to that was only intensified. This thing, whatever it was, wasn't slowing down. I've never felt so out of control of my own body.

It never did reach my face (thank goodness) but each day it still got worse. It managed to get my stomach and my hands before the following Wednesday came along and the doctor finally called with my biopsy report. Again, I anticipated confirmation of a viral infection, a recommendation to wait it out, some prescriptions to help in the meantime, bottabing, bottaboom, back to my happy self. Or not. "Miss Winegeart, it's not a viral infection... Our report says that it is consistent with a reaction caused by an arthropod bite (arthropod is a scary word for insect, thanks Google), but the doctors here at the office have to disagree based on our assessment of the aesthetics of the bumps. The report also states that it could be caused by a drug eruption (meaning a reaction to medication.)" So based on the fact that we can't find a bite site on my body, and the fact that I literally hadn't ingested any medications leading up to the outbreak, they were telling me that they still had no idea what was causing this bizarre behavior. Another office fee, another dead end.

Luckily at that point I had called enough times for them to know just how bad things were getting with the itching. I would wake up in the middle of the night, and still halfway unconscious I would realize I had been scratching. I'd get out of bed to find that in my sleep I had scratched part of my arms and legs to the point of even drawing blood (okay, it's absolutely gross I know, but if I don't accurately express just how bad things got, I feel like I end up sounding like a big whiney baby. Or who knows, maybe that's how I sound anyway. Oh well.) To help with my symptoms, we agreed that I would take Prednisone for a period of time, a bad-mamma-jamma steroid known for its anti-inflammatory powers. This is some hard stuff, by the way, which is why they waited so long to prescribe it to me. It's so powerful in fact that you have to take graduated doses over time so you can ween your body off of it. Thankfully I didn't have any weird side effects (which I heard does happen) besides some mild jitters.

Thursday, the morning after taking the Prednisone for the first time, was the first morning in almost two weeks that I noticed any sort of improvement in my condition. Up until that point it had all been downhill. I'll never be able to describe that feeling of finally seeing hope again. (That sounded way more dramatic than I intended it to, but I swear it's true.) When you're going through something like that where every day seems worse than the one before, you start to forget what normal feels like. You lose sight of how it would feel to see your condition start going away. And when I finally experienced that moment of "this might get better," it was the happiest day. Each day I took the medication, things improved. I got to the point where I stopped thinking about it every second of every day, and I sincerely thought that these few weeks were just a freak incident that would fade into a distant memory.

My prescription for the Prednisone was for 20 days. My final dose of the pill was yesterday, and up until then things had gone almost completely back to normal (except the scars that remain on my arms and legs where the scratching got the better of me.)

So that begs the question then, why the sad day?

Two days ago while we were in the mountains on our retreat, I was washing dishes after breakfast and happened to look down at my bare legs. I instantly noticed that there appeared to be white blotches on my legs. These were the same white blotches that turned into bumps back on March 25th. Instant panic set in. I called my mom immediately (because I may be 23-years-old, but when something like this happens to you, nobody knows how to make you feel better like your mother.) She assured me that the second I got back home, we'd find a second doctor and get blood work done to get to the bottom of this mystery. Her confidence was reassuring, but I couldn't get over the heart break of seeing those familiar blotches back on my legs. I did my very best to keep calm, and over the course of a few hours, the blotches went away. Maybe I overreacted, I thought. Maybe I'm just so scared of it coming back that I'm starting to see things. 

Then today. This morning I woke up to bumps on the backs of my knees. The itching has returned too, though not as bad as it was before. My mom managed to get an appointment with one of the best dermatologists in town and tomorrow morning I wake up to go there and see if they can help me find out what's going on in this body of mine. Even though I thoroughly hate the thought of needles, I know it's what needs to be done in order to determine the underlying cause for all this madness. Still, I spent the entire day teetering on the verge of tears just thinking of what might happen if this issue flares up badly again. My brain instantly goes back to the misery I felt for those two weeks, and I want desperately to avoid that feeling again.

There are a ton of things I have learned from this process - ones I hope to share at a later date when I can look at this entire situation in a much more objective light - but there is one thing that has stuck out to me since the very beginning when this all started. You never know how much you appreciate your health until you don't have it anymore.

I don't know what this thing is yet and I don't know where it came from. I do know that it hasn't gone away, and that part scares me. Tomorrow I hope to wake up feeling like I'm on top of this whole thing, confident like my mom was on the phone when I called this weekend. "We will find out what this is. We will figure out how to make it go away." I want desperately to feel that way tomorrow. But for now, I'm just sad. Sad that it's back, and sad that this unpredictable and inconvenient thing has gotten the better of me momentarily.

Thanks for bearing with me through this downer of a post, but I just had to get the whole thing out on paper so that maybe it won't clog up my head anymore. I hope I can stay strong, and I hope most of all that this whole thing turns out to be nothing, because I must say, more than anything, I really hate sad days.

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