At the end of 2017, I wrote in my yearly digest that I never expected that year to be so full of struggles and new beginnings.
I had no idea what was coming.
Pregnancy, childbirth, postpartum. Being unable to travel, taking small trips, and then a dream vacation. Lupus flares, pleurisy, immobility, pain. A new bird, and almost losing my old one. A newborn, a teething baby, a baby who’s starting to crawl… it’s been hard and tough and wonderful and terrible and amazing and painful. Let’s look at the highlights together.
Blog highlights.
My Meena Life turned three years old in July. I had the highest blog traffic to date even though I created the least new blog posts. I only managed to write and publish 15 blog posts. (To my frustration, the number keeps going down – from 79 in 2016, to 28 in 2017, to just 15 in 2018.
However, I did write eight posts for NewLifeOutlook Lupus this year, which was great for me professionally and financially but did take significant working time away from the blog. Even though I didn’t get to blog the way I wanted to, I am comforted to see that my traffic increased by 32% from the previous year (in terms of page views).
My lack of blog posts is primarily because of my continual health decline and also because I accomplished the immensely difficult task of creating a baby and then taking care of that baby full-time as a sick parent.
View this post on Instagram
My top posts from 2018 were the ABC’s of lupus and the ones about my first and second trimester of my pregnancy. Of course, my all-time most popular posts are still Neuschwanstein Castle and our cost of living in Germany, although my post about ten things I didn’t realize would happen after I was diagnosed with lupus did join their ranks this year (thanks Pinterest).
Aeroflow Healthcare sponsored two posts on my website this year – one about sleep apnea and the other about high blood pressure. Those are both issues that I’m very passionate about raising awareness for and I was elated to get the chance to be matched so well with a company for a sponsored post.
I was hired by The Commoner Magazine to write an article about spending a day in my hometown of Charlotte. That was fun, particularly because I love Charlotte so much and I am always wanting to tell people about how wonderful this city is. And finally, I was hired by ZubiaLive to record four videos on chronic illness topics (none of them have shareable links, unfortunately, but you can find three of them by searching ‘lupus’ on their site), and I really enjoyed getting to work in a different format for a while.
One goal of this blog is to write heartfelt, useful posts while also earning an income – whether that be from sponsored posts or getting freelance work by sharing what I’ve done on My Meena Life. I’m so happy that I accomplished that goal over the past year; it was the first time I earned any significant income from writing and blogging. And since I managed to do it despite struggling greatly, I’m looking forward to even more success during a year of hopefully less difficulties.
Travel highlights.
I have few travel highlights from this year, but those few were incredible. From January to May I was quite pregnant – with a high risk pregnancy – and couldn’t go away far or for long. We took short trips to places nearby like Campbell’s covered bridge and went all over Charlotte for fun pregnancy photos – posing with the cherry trees, the exclamation point, and a toucan mural, just to name a few.
We took our first actual trip of the year when Baby Meena was two months old. We stayed in Dillard, Georgia for four days exploring the nearby Black Rock Mountain State Park, Tallulah Gorge State Park, Brasstown Bald, and iconic Bavarian inspired town of Helen.
View this post on Instagram
I’d love to share an entire post about our first trip with baby, but my Instagram photos are all I have for now.
View this post on Instagram
We took a few more practice adventures, as we called them, in order to learn how best to travel with our little one. We hiked at Stone Mountain State Park and Graveyard Fields. We visited Lake Lure, Mount Airy, and a couple remarkable wineries. (All these places were in North Carolina.)
And all that practicing paid off in full for our second real trip of the year (and ever) with Baby Meena. Thankfully we were quite prepared overall and our vacation turned out to be the stuff of dreams – we spent 10 days in the beautiful Caribbean island of Curacao!
I had been wanting to visit Curacao for over a year to see the colorful downtown and tropical beaches, but I didn’t think we could work out the vacation days, get Baby Meena’s passport on time (that was a doozy), or swing the cost – but it all worked out in the end.
It had been over a year since our last big trip (to the Outer Banks) and I’m glad that Curacao was the place we chose after waiting so long to travel again. We left the day before Thanksgiving and thoroughly enjoyed our holiday in the Caribbean sunshine. We spent our time there walking the colorful streets of the capital city, swimming in clear water, and finding all those cool, lesser known spots that left us in total awe.
I will likely always struggle with unfulfilled wanderlust after how much we were able to travel when we lived in Germany, but I’m learning to gratefully accept whatever travel we are now able to experience. Having lupus is expensive, time consuming, and difficult – it’s always going to be a limiting factor for us – but the travel is more than worth it. I’m so grateful that we got to spend time in Curacao, a place that touched my heart dearly, with our delightful six month old.
My health journey.
There’s really not any highlights to be found in this section; this year was hard to the extent that I’d rather leave this part out entirely. I’m not going to, of course, because I’m determined to share my life with chronic illness in advocacy and support of others like me.
This was only the second year that I knew I had lupus (I was diagnosed in 2017), and that knowledge did make things a little easier. I started 2018 with a rheumatologist who frustrated me to no end (which led to me writing a post about why one might need to find a new rheumatologist). The final straw was when he wouldn’t give me prednisone after my OB and and maternal fetal medicine doctor both told me to take it – because taking a prednisone pack was safer than having a flare. I ended up having to get a script from my OB and managed to start seeing a new rheumatologist the next month.
I had to take approximately one prednisone pack each month to control my lupus symptoms during my last five months of pregnancy. Even so, I did relatively well until the last month (you can read about that my third trimester post). I had an arguably successful birth, although it was quite traumatic for me (you can read about that in my birth story).
The days after giving birth were a painful blur. Motherhood was hard for me from the first moment – not because of my baby, but because of my lupus. No, my little baby was beautiful and healthy and an excellent sleeper from the start.
Lupus made me unable to do so many things that I wanted to do with my newborn. It was (and is) so hard to not be the mom I want to be. And, as predicted by all my doctors and chronic illness friends, I had my first postpartum flare at six weeks. Pass the prednisone, please.
After that I started having monthly flares again. Like before, they came in sets. I had three or four flares in a row where pleurisy was my main symptom, which was painful, preventing me from breathing deeply and, at it’s worst, even bending over or standing up too quickly. Then my next set of flares featured fatigue as the main symptom. I actually slept through my baby crying in the afternoon because I was so exhausted – literally, I was lying right next to his crib unable to get up. (And before you say well everyone gets exhausted like that with a baby, you should know that I was still getting eight hours of sleep every night when this happened thanks to my husband taking the night shift.) When my baby was six months old I started having flares where my knees hurt and kept me from functioning properly. Those culminated in a flare where I was unable to walk and was stuck in bed or the couch for nearly a week.
So here I am echoing my sentiments from last year, and the year before, and the year before that.
I don’t know how to live with all this pain. Especially when I have the physically demanding task of caring for my baby. The pain never stops, and it takes everything I have to stay on my feet day after day and withstand the assault on my mind and body. This year brought me a lot of new medications, but nothing has really made a difference. I’m hoping that 2019 will bring me Benlysta (a medication designed for lupus – the only one, in fact) and some actual pain relief.
And the worst part? We paid approximately $20,000 for our healthcare and medical expenses this year. Let that huge number sink in for a moment. We paid that much money and I was still physically miserable most of the time. It’s been the challenge of my year to remain mentally present and positive while being physically miserable.
View this post on Instagram
I don’t understand why no medical professional has been able to offer me better solutions to this pain over the past four years. It’s been four years now.
So I have to keep thinking there will be end to the constant pain – there must be some sort of improvement out there. Somewhere. I joined the Mamas Facing Forward Facebook group for chronically ill moms when I found out I was expecting, and they have been a hugely positive influence. It means the world to be able to connect with other moms who are doing motherhood while facing the same struggles.
I hope I can be a similar influence to others, even though I have to admit this part of my digest is rather depressing. But that’s my life right now. Thankfully, I do have one chronically ill mom friend who’s been with me through it all. According to my rheumatologist, this will be the hardest part of my life as far as my lupus is concerned. While I have my doubts, I have to believe that it will get better.
Personal highlights.
In January we found a companion, Dyna, for our beloved budgie Koopa.
We watched the birds bond and attempted to tame Dyna (she remains pretty wild though). Once we were satisfied that Koopa wouldn’t feel too abandoned when a baby joined our family, we turned our thoughts to prepared for said baby – which is a ton of work.
We researched bassinets, cribs, bottles, breast pumps, baby carriers, diaper bags, diapers, baby bathtubs, nursing bras, car seats, rockers, etc. The entire process was time consuming and exhausting. We’d spend an entire weekend researching a car seat, going to Buy Buy Baby to see if it would fit in our car (we have a very small backseat), only to find ourselves with no answers on Sunday night. Preparing our home for our baby was the focus of our lives for far too many hours, but we did it. And we happily managed to continue our goal of minimalism in regards to baby stuff; in fact, we only had 28 items on our baby registry. Thankfully, our friends and family respected the fact that we didn’t want much and we received very few gifts that we didn’t ask for – a huge win.
And then Baby Meena was born and came home to the nursery we’d prepared so carefully for him. And most of our plans worked well, but plenty went right out the window. We adjusted. Gradually, we started to understand and predict Baby Meena’s needs – and realize that they would change the next week. It took about three months before I stopped feeling constantly overwhelmed.
Unfortunately our cherished bird, Koopa, almost died when Baby Meena was six weeks old, which threw even more hardship into the mix. We got Koopa the care he needed to survive and kept doing so – with weekly or fortnightly trips to the vet since June. There was one point we were certain we were about to lose Koopa, but somehow that bird is still with us and feeling quite well (and mischievous) at the time of writing. (Update April 2019: Turns out Koopa had ovarian cancer, which was removed via surgery.)
Our vet loves to tell people about the bird who went to Germany who also survived something that most birds don’t survive. Koopa’s illness was an added layer of stress (and expenses) throughout the year, but we’re appreciating every moment that we still get to enjoy our bird.
Mr. Meena and I celebrated our fifth anniversary in December, which was actually meant to be celebrated in Curacao but the timing didn’t work out and we had to take the trip earlier for several reasons. One of those reasons is that he changed jobs in December – going back to work for the company that sent us to Germany for a year – and things are going brilliantly there so far. It was exactly what he (and we) needed.
We also celebrated our first Christmas as a family of three. Christmas is quite magical with a seven month old; Baby Meena was just old enough to “open” his presents, love on everybody, and laugh enough to brighten everyone’s holiday.
In the end, 2018 was yet another year of persevering through incredible hardships while also experiencing amazing things, like the birth of our child and getting to travel as a family of three. A friend of mine shared a quote recently that I related to after spending time in reflection about the past year:
“There seems to be this idea that we should be comfortable all the time. I think that probably half of our life is going to be a total disaster. I think that half the things we do are going to be mistakes and half the emotions we feel are going to be uncomfortable and there’s so much relief in acknowledging that that’s OK, that’s what it means to be a human being.”
– Brooke Castillo.
That quote gave me hope. Because at least half of my year was a total disaster. But the other half was amazing. And that’s normal. And I’m going to keep going and look forward to the amazing things in 2019.
How was your year?
Your year sounds like it was even more of a roller coaster than mine! I’m so glad that you got to have so many amazing experiences, and I’m so sorry to hear that you were in so much pain. Oh, and your little boy is just adorable!
I think the universe wants us to meet even though it didn’t work out that time in Hildesheim: My mom just moved to Charlotte, so my next USA trip will be to your hometown! I have no idea when that will be yet, but it would be cool if a meetup worked out sometime.
I wish you all the best for 2019. I really hope that you are able to find relief from your illness. I think of you a lot and I hope that my positive thoughts are somehow reaching you (as corny as that sounds).
Danielle
solongusa.blogspot.com
It’s funny that you said it was a rollercoaster year – because it was the first time in many, many years that my husband and I did not actually ride a rollercoaster for an entire year, ha! And that is because we were too busy with the ups and downs of our life. Thank you so much!
Oh my goodness – that is so cool! Yes, it seems that we should definitely meet up! Let’s definitely get in touch once you start planning your next trip. Does your Mom like Charlotte? We love it here, for the most part.
I really appreciate all your kind words – I think of you too and how I’m glad we’ve connected online through our experiences. Wishing you a wonderful 2019 as well!
Such an inspiring read as always, Ava!
First, both baby Calahan and baby Dyna are the cutest creatures on the planet! Second, it´s amazing that despite all the struggles you still manage to travel as a family of three and even share your stories. Hope to read more in 2019 (that declining posts´ tendency should be broken lol)
I´ve been on a blogging break myself (we had a second baby..) so I´m currently scheduling new posts for my Facebook and Twitter and will go through your blog to share with my readers some of my past favorites. I guess I´ve told you – but again, I absolutely love your blog and admire your journey so much. For me, it´s super inspiring, thanks for that.
I´ll keep an eye on your blog but if anytime you want me to share/retweet smth – simply DM me, cause I´ll be more than happy to spread the word!
Thanks so much Anna! You are so sweet! I’m very grateful that you’re following my journey and I’m working really hard to stay blogging! It is so challenging with a baby and a chronic illness but so fulfilling as well. Travel is also challenging but of course so much fun. Congrats on your second baby! That’s wonderful. Thanks for sharing my content and being so supportive, I’m so glad to have you as a blogging friend! 🙂