As 2013 comes to a close, I figured I would do a year wrap up post, of sorts. When I began to think about the things that stood out for our year, the main thing that came to mind was finally getting things under control as far as my health goes. I also realized that I never really did a ‘my diagnosis’ post this fall after I finally got answers, so I thought that would be a good way to wrap up 2013. This post won’t be super witty, and it may even be mega boring…but I figured I’d give this wrap up a shot!
Most of the [beginning part] of 2013 isn’t on my blog, because I wasn’t blogging very frequently at the time. If I had been, it would have been fairly boring, with repetitive posts about lab work and specialist appointments [or vague posts about almost nothing real at all, because I felt the need to hide].
It’s ironic to post this on December 31st, 2013 – because it was a year ago, December 31st, 2012, that I saw my first rheumatologist. But that’s not really the starting point of this latest debacle. It really starts a few months before.
In the Fall of 2012 we were smack in the middle of our first year trying to conceive [which – spoiler alert – hasn’t happened]. In general, things were going well. And then, I started to pee blood [oh yeah. I’m going to talk about blood. Sorry]. And, with my history of kidney stones and kidney infections, I assumed it was one of the two, and after a few days, went to my primary care. Turns out, it wasn’t either of the two. To make a one-month-straight-of-peeing-blood story shorter, I ended up having to have a bladder scope, and they found 2 large blood clots in my bladder. The doctor really couldn’t explain where they came from, or why they formed. He thought maybe I was running/hiking/walking too much. I didn’t really believe him.
After a month of [that], I felt pretty terrible. My iron stores had gotten really low, and I was exhausted. For two more months. I kept telling myself that I would start to feel better. But I didn’t. In late October we had our yearly blood work for insurance-purposes, and my results were all-freakin-over the place. I had almost no white blood cells. My billi and liver enzymes were through the roof. And my c-reactive protein (which measure inflammation in the body) was also sky high. I was seeing an acupuncturist at the time to help with my anxiety and my fertility (or, apparent lack there of), and I showed them to him. He promptly wanted about 100 other tests ran, which my primary care physician also agreed needed to be ran.
7 pages of lab work later, I had a positive mono test (which I had had about 4 years before), and an even higher c-reactive protein, and a positive ANA. And, for those of you who haven’t ever gotten those lab results and frantically googled them, that [basically] means you have an autoimmune disorder, of some sort.
At this point the weather was turning colder and my symptom list was growing. My joints in my hips, knees and hands were aching, I had stopped running and kitting because the pain the next morning was so bad. I was tired all.the.time – to the point that there were days that I could not get off the couch. Some days, just walking a few feet would put me so out of breath I would have to stop. And stairs? Nope. I felt like I was catching the flu, every day, for 2 months.
So, on 12/31/12, I got my first referral to a rheumatologist. Who was 2 hours away.
…Who reran all of my lab work because ‘he liked his lab better’, and all of my numbers came back just a smidge lower, and he told me that he ‘believed I was a bit too young to have autoimmune problems, and that I could have the numbers reran in 6 months if I felt like it, but he was pretty sure I was physiologically manifesting the symptoms’.
The worst part is, I believed him. And so for the first half of 2013, I told myself ‘it was in my head’, and ‘I just have to push harder’. Even as the symptoms got worse.
The colder it got throughout the winter, the worst my joints were. I had a photosensitive rash that hurt anytime I was in direct sunlight. I also started having symptoms of Raynaud’s syndrome, which is a condition (oftentimes secondary to autoimmune dysfunction) that causes your body to shun blood from your extremities. In my case, my fingers. And in my case, 5 or 6 times a day, for 30 – 45 minutes at a time. But it’s all in my head.
It didn’t help that work was insanely busy. This let me hide behind the thought of ‘I only feel bad because I’m working too much’.
Over the first half of the year I also [almost totally but some days not really] stopped eating dairy and gluten, because both of those seemed to make all of my symptoms (especially my joint pain and stomach pains) a whole lot worse. I’m not a fan of giving up foods for no reason. But man do I feel better without those two.
Mid – July I had one of my extreme bouts of exhaustion. And I decided I was going to do something about it this time. A rheumatologist had just opened up in my town, and I’d heard good things about him. I decided to get my lab values (that had been out of whack at the beginning of the year) re-ran (out of pocket) using Direct Labs (which is awesome). When they all came back (not surprisingly) still all over the map, I made an appointment with the new doctor, and took him every.piece.of.medical.history I could get my hands on.
He ran his own battery of tests, and then pointed out the huge gaping hole in my immune system – I have no ‘IgA’ blood protein. This protein is most responsible for helping to build up mucus linings to prevent germs from entering your body. Hence feeling sick all.the.time. It can also be very early signs of other autoimmune disorders, many of which I have symptoms of – but no lab work to ‘back it up’. He also was concerned about the high levels of inflammation in my body, which puts a strain on all of your organs. He decided to put me on Hydroxychloroquine (Plaquenil) – which treats a host of autoimmune disorders, and inflammation.
He told me it would take at least 4 weeks before I saw a lot of improvement. And it did. Which was hard, but then (around October) I started to feel better. I think it was one of those ‘feel betters’ where I didn’t really realize how terrible I felt, until the medicine started helping.
There are still days right now that aren’t perfect, and I definitely have limits now that I never had before. But, this weekend I knitted for eight hours, and today I am able to type. And Saturday, well Saturday I ran four miles, which my first time running
that far at all in – maybe – 6 months. And at the end…I had the most beautiful runners high. Wow had I missed that.
And on 12/31/12 I was pretty sure none of that would ever happen again.
So – I am super grateful to be on the ‘mending’ side of 2013. I am looking forward to going headfirst into 2014 – which should bring some pretty crazy changes – as we should find out in a few months where Nathan is accepted (and therefore where we are moving) for his phD. EEK. [deep breaths]
I hope everyone has a very restful last day of 2013! I’d love to hear about your 2013 – did you rock it? Or are you ready for a 2014 ‘clean start’? (I most certainly remember being ready for a clean start when 2012 rolled around!). Tell me 3 things (awesome or not!) that happened in 2013..and some things you’re looking forward to in 2014!
See you next year! …Also known as Thursday.