Reflecting on 2019
Nobody can go back and start a new beginning, but anyone can start today and make a new ending.
— Maria Robinson, The Chemistry of Joy Workbook .
LESSONS, SHORTCOMINGS, FINDING SOLACE?
If the header doesn’t give it away, let me tell you that my 2019 was a mixed bag of joy and grief but mostly worry. By nature, I have always been a worrying child in my younger years but have mostly grown out of it by now…well, so it seemed. I am pretty much a content person today and I tend to nurture and spread positivity in the world around me whenever I can. Finding joy and gratitude in life and myself, and the act of giving to others is something that I’ve always striven for. As an INFJ personality type, I have never lacked empathy for others (not that my life was a piece of cake to navigate through in the first 30 years), but unless you walk in someone else’s shoes, you just don’t know the impact or consequences of cards dealt without ones’ choice. So, when a curve ball hit me this past year, no amount of intuition, insight, life experience or knowledge had me prepared for the challenge and overwhelming lack of incompetency laying ahead.
JOY, FIRST.
Books
I have been fortunate this year to have read some amazing books. Either my choices have been mostly spot on or I have simply lucked out with publishers reaching out and hooking me up with a great fit for me. Of course there are some true and tried sources and authors that I like to fall back on and those are always welcome to send more books. Truth is, it seems that even those have turned it up a notch this year. I’ve read several sequels or debut author’s second books that have blown me away, and I am so happy to see this and take part in it..for however brief it may be.
Social Media
Twitter has been good to me this year, not for the lack of amazing posts by me, but for the folks that have made it a welcoming community and shared the love of reading, in part my reviews, and have in general geeked out over the same stuff as I. One event that I enjoyed following this year for the first time in full so far was the SPFBO put on by Mark Lawrence, author of several fantasy series. I know it has kept many bloggers busy reading and reviewing and I enjoyed watching it all unfold and connecting with Self Pub’d authors. Now my tbr is even higher! I should also mention The Write Reads account, working hard for bloggers, coming up with giveaways, blog tours and supporting book bloggers all around. Another thing l gained through this outlet, are some great bookish podcasts that I know listen to when time permits. So, if I am not reading or listening to books, I can listen to conversations of books while cleaning house, driving or working out! Perfect. Gaps filled :)
In all it has been a great experience on Twitter and I love all my bookish buddies.
Personal
I haven’t traveled to Europe in over 6 years, yet I have family overseas and wonderful memories of my childhood years in Germany. So, to my own surprise, I ended up traveling to Frankfurt not once in 2019, but twice! I have traveled to many great places in Europe before, and frequently too, except in the last 8 years. You think you know a place or remember it a certain way, but time has changes so many things in one area and preserves others untouched. Perhaps having been away for so long had me look at things differently, because these trips and beautiful sights have left lasting impressions and an adoration in my heart like never before. London was a highlight for me on my second trip in the year and I fell in love with the city. I definitely need more days there next time, but I had a lovely time with my cousin and her son traveling and sightseeing.
I also loved going to the beach in Florida this year in late summer, almost forgot :) I so could be a beachbum!
So, I am still a zen runner, but haven’t run as much as in the previous two years. Getting out there though allows me to keep my sanity! I love heading out with my earbuds and an audio book or now also a podcast ;) and put in some miles. Sometimes the surroundings are too beautiful and I turn it all off to just be. I will always recommend getting out as a mood enhancer and self care if ability affords.
One nice thing that’s come about, I lost 40 lbs this year. I try to eat clean and have learned over the years what I need to stay away from. Managing hypothyroidism and pcos, my two culprits, were at the forefront of my weight loss. They are a double whammy, but I am managing currently and sometimes I actually feel strong and beautiful despite my age.
falling short,
but I am trying to stay on the bright side.
Yes, I had goals this year! I wanted to become unrealistically better and bigger at everything I do in 2019.
Be more present on social media
Run more miles
Write Christmas cards this year
Read more books
Become an ace in photography
Have an amazing blog
Since I already exceeded the year prior (now in hind sight) on my reading and running goals, I set myself up for disappointment but also with room for failure in 2019. See what greed gets ya?!
Books
On Goodreads I set my book goal for 80 books this year because I do this silly thing where I set the number low, but secretly desire the ‘oh will you look at that’ experience when I outdo myself! This year I was hoping to outdo myself by 50 books since I achieved 128 last year. Though I am disappointed and bummed out I didn’t make it, it is what it is.
I didn’t fail, but I failed!
In regards to Netgalley, I have figured out from past experience that I can’t go crazy on it. I fell in that trap before!!! So, this year, I left myself plenty of wiggle room and my ratio at a nice 95 % or higher. Right on.
I didn’t run more miles this year or write Christmas cards, shame on me, so let’s just skip over that part! Failed it.
I wanted to be more present on social media, in particular Twitter and Instagram, but it’s sporadic unfortunately. I do what I can, when I can. I’m struggling to divide myself in the needs to produce, react, praise, retweet and comment while life’s responsibilities are tugging at me in all directions. Be kind, I’m trying and I care.
My blog is alright but needs work. I am the black sheep among bloggers since I don’t have WordPress but Squarespace. I have a nice amount of traffic, but few comments. Those that do leave one are always the same bookish peeps you can count on one hand (that’s one hand, people) and I so, so appreciate it. Everyday I am contemplating to move to WordPress. I mean, I pay a good amount of change to keep my site running, without the connectivity WordPress offers or generating income perks. Though, I’m fretting in having to recreate it all, if I did, or even on my current site when I revamp it. I know I want change, I have a vision. What I lack is time. Help! (Hence, I want to be better at EVERYTHING so I can do it all.)
My new camera, my first dslr ever, I bought 1.5 years ago for my wanting to get into the photography craft my entire life, as a hobby. There are life events that I have no pictures of and I have had enough! However, another reason was to use it for my bookstagram. I actually don’t spend so much time on there browsing, but I am taking ques from what others are doing in my feed and find inspiration to photograph my books. Now, I love, love, love the craft but often, due to lack of time, I end up using the cell phone. I am currently looking into editing software and I am always open for suggestions, tips etc. Out of all my ventures, Instagram is my failed venture with the least amount of following.
curve ball
The other side of the balance.
The Best View comes after the hardest climb.
-Author unknown
Fingers crossed.
I am contemplating on writing this even now as I type. Not sure if I should share too much information, after all, it’s a book blog. But somewhere behind those reviews are real persons dealing with normal every day stuff and or huge problems. If it’s a health struggle, finance problems, marriage/relationship issues…it’s all possible. Different walks of life, maybe in different places of the world…but still human.
So, I have always been a reader but never considered reviewing or blogging and all that good stuff, but I came to it in spring of 2018 when I started having more time on my hands. I have two sons, and one of them went 2800 miles away for 3+ years to college and I only saw him twice a year (He just graduated before Christmas), and my youngest just turned 15 late this last summer. With the kids growing up and so forth, I put my extra time into more running and then began blogging and reading more. Things were going well, I found my tribe of bloggers, pumping out reviews and numbers started climbing steadily. I was truly pretty ambitious, not that I’m not now, but I lost my wind when my youngest son was diagnosed with a rare, often fatal genetic disease. I was in my first year of this gig here, and that was fall of 2018.
I have seen things. I have felt things. I have endured at times. I have struggled some too. but I wish I was as ignorant now as I was before i knew what it feels like to have a child with a serious disese.
-Scarlett
Every day I wish I could trade places.
Honestly, we found out by accident. I took my son in to see the doc for something unrelated and mentioned on the side that his hands are always shaky. As far as my personal experience has been for most of my adult life, the docs often don’t take complaints serious and I want to say, the pediatrician portrayed a small hint of ‘well it’s nothing’ shrug on her face, but she ran some labs anyway. From there, she ran them 2 more times and sent us to two other specialists without telling me what is going on. So, as I was seeing the other doctors, they hinted at what the peds doc might be looking for but could not confirm anything without their results. Well, long story short, when the pediatrician finally called me and spilled the beans she sent us to an immediate appointment at Vanderbilt University Hospital in Nashville (normally it takes a year to get an appointment for this particular specialist), for more tests in different departments.
From there followed more tests, MRI, ultrasound and scans, etc, etc. For several weeks there was so much limbo going on, that my world went from flying high, to crushing down and everything in between. This went on through the beginning of 2019. In order to see the progression of my son’s disease we needed data to accumulate over time. We couldn’t really tell, where we were heading in this. What the docs were telling us then, is that we were very lucky to have caught it at this time because it is a silent, mostly pain free disease at first, and often diagnosed too late at onset of serious symptoms, which at that point it is often too late to save the patient. For all my local docs and specialists in town, my son is the first of their patients to have this.
If you are still reading and you haven’t deleted me from your feed, THANK YOU. I just wanted to say that this has affected all aspects of my life and love for reading, blogging, tweeting, photography and running. Now you know. I may be behind by three reviews or not accept books at times, but I am continuing my reading, reviewing and blogging ventures.
If you like, keep reading, otherwise, thank you so much for sticking around till now.
I started having sleepless nights for months. Since I am prone to migraines, I wasn’t functioning very well. I was juggling the ‘be well in front of your kid’ face to not add extra worry onto him. At this point, he understood that this is serious, but how well can he handle this or how does he feel about it really?
He asked me if he had to die.
This was so hard to hear and have a conversation about. How was I supposed to know or even plan for High School / College? I decided to keep going positively and I wasn’t going to add undo stress because everything already started to evolve around him. So, his diagnosis was confirmed by now and like I’m in a dream, I asked the specialists again and again: ”Are you sure it isn’t something mimicking it? Something else? ”. As if it was all a fluke and I could wake up and yes, it’s something else, not life threatening! But no, it’s confirmed. My son has Wilson’s Disease. He is one in 30000 people diagnosed with this disease, inherited from his dad and I who apparently are carriers of the defect gene, but don’t have the disease. The match up in carriers producing a child is rare and the chances are 50/50 in two children by that couple. So one of my son’s has it, and not the other does not. Following the predictability right on.
From here it was a lot of info gathering, learning as much as we can, joining groups online and so on and on. Truth is, it is so rare, that there are just a few specialists in the world. Patients have to travel far to see doctors. The organisation for Wilson’s disease online looks in its infancy compared to the Heart or Cancer Association, though without doubt offering excellence in info for as what is known at this point about the disease.
To explain in short what this is all about, a person with Wilson’s does not produce the enzymes in the liver needed to process/break down copper taken into the body through diet. And copper is in EVERYTHING! What happens is that the copper starts accumulating in the organs, the brain and other soft tissues leading to metal toxification, cirrhosis of the liver and organ failure. Symptoms vary by the exact gene defect composition (special gene testing is needed) very individually from movement impairments of the extremities, inability to walk, tremors in hands/arms over to loss of speech and ability to swallow or communicate. Another large component are neurological and psychological problems due to copper build up in the brain.
My son was immediately started on the least invasive treatment possible with Zinc Glucconate that blocks the absorption of copper in the stomach and he was monitored from there on out. This happened right in 2018 and we needed data to see where this is going. At first it brought the copper in his system down but then it began to slowly rise, accompanied with upset stomach and headaches. So, sleep deprived me, used all the available research and nutrition guidelines and my house started to follow a strict diet of low copper foods for patients with Wilson’s. I have always been a proponent of healthy eating, but this cut out a lot of good stuff! No more whole grains, seeds, nuts, dried fruits, beans, dark meats, pork and cocoa. This is almost the opposite of what I have always valued: Whole grains, seeds and nuts! It translates into using white bread, no more bacon!!!!, no chocolate and always researching labels online, since copper isn’t listed generally. Cereal choices are reduced for him now and all the “unhealthy” ones seem ok!?! Because when it comes to sugar chocolate bombs…guess what, it isn’t always chocolate! So, unhealthy is the new healthy for my son. I am always looking for recipes and ideas.
These changes brought down his copper levels (initially) and I could finally breathe. We were planning our first trip to Germany in years. I researched food and waters overseas and prepared best as I could. By now it was April 2019 and we spent May-June in Germany. My son’s leg cramps and headaches increased while overseas. He had some very abnormal twitching in his fingers and my worry-meter went up again.
There are only two options available to treat patients at this time: medication (and there are only two on the market) and liver transplant. Gene therapy is in the works but might take another five to ten years to be used as treatment. Despite us sticking to a rigorous diet plan, meal times and medication schedule (he has IBS as well and takes meds for it, but all his meds need to be taken at a certain time of day and away from meal times) the copper crept going into higher numbers and some of his other blood levels changed all over the place way out of range of normal. It turned into works of chemistry that the specialist have to figure out that goes way beyond my abilities. But I was assured that the Wilson’s Diet is not a factor that brought things out of whack. As a matter of fact, these abnormalities aren’t figured out still as of today, because the doc’s main focus stays on the copper and organ failure. Of course I don’t like these unknowns.
Every time I see the specialist I stay over night in a hotel. The drive and the traffic in the area of the hospital is tripled by rush hours and wait times at the doc vary greatly despite appointments, so I can never plan to be out by a certain time. Having to put my trust into the docs is really difficult as the disease runs it’s course differently for everyone. I have read of patients dying within the first 4 months after diagnosis, some become disabled and wheel chair bound, some have a series of health issues that come along or set on slowly, while just a few live to normal life expectancy if caught early and received treatment. I have no idea where it will be going for us and I have stopped reading the online group platform because I couldn’t handle hearing of all the cases and parents losing their children. It’s not an easy way out of this world from what I have learned and it just chokes me up. I can’t take it.
By the end of summer in September 2019 his copper levels went beyond what the doctor is comfortable with. After a 45 minute conference call at 8.30 pm from my kitchen table with his doctor and a check with the insurance (the medication off brand is $12000 a month!), we progressed into the next tier of medication and phase of treatment. It is a chelator that binds and strips the the copper in the organs and flushes it out. Now, there are side effects and warnings…..and of course it was very difficult for me to hand my son pills of such caliber. I don’t want to put this into his body if he can have exasperated issues with the liver or death if that is exactly what we are treating him for to circumvent!
More sleepless nights.
My cousin, around this time, had asked me if I wanted to go to Germany with her and her son and I was contemplating. I knew I could only go if my son was ok but he was about to start this new medication. This was one of the times where my low was at an extreme and I was spinning like a hamster in a wheel, trying to help my son. So, wrestling with myself and putting my faith into the treatment, I gave my son the medication and waited like a watchful dog. It was a Friday at the beginning of October. The hours turned into a day, an overnight, a weekend….and he seemed fine. No complaints. No stomach upset.
Breather.
I meal prepped for three weeks for my son and went to Germany. Our next doctor visit and tests were scheduled for right after my return and it always takes some days to receive the results. The number game is different now. Now we want to see high copper values leaving the body. More to learn. When the doctor called to explain the results, he said he was pleased with them. This was in November 2019. We are seeing him again in 4 weeks from today for testing.
At this point, today, we have no data on how this is going besides the one result since the new medication. Apparently in November, about a month in on the new meds, my son’s taekwondo teacher said he noticed an increase in his stamina again. At his last rank testing, he is a Decided Second Degree Black Belt, my heart ached watching him along all the other kids around him. We haven’t told anyone of this but his teachers. Not friends, only close family. Seeing him there, you couldn’t even tell that he is dealing with this silent, invisible disease.
I know there is far worse in the world. I have been there for others. The feeling when it happens to you and not even yourself but your child, a young person, is indescribable. Chest aching, wrenching, hurting.
most recent hospital visit
But I remain grateful.
Here I am. This was my year.
Thanks for reading. Thanks for chatting books.
Wishing everyone a Happy New Year!
