Updates, updates, updates! Last we spoke, I’d begun experiencing a symptom flare that resulted in fainting. This meant more testing. The testing confirmed what we have long suspected: my autonomic nervous system is broken.
Thankfully, I was able to make an appointment to see my specialist much sooner than expected. So yesterday, with a page full of scribbled down questions, my mom, husband, and I made our way to UTMC to see Dr. Grubb, a leading specialist in autonomic dysfunction.
What is the full diagnosis?
The basic diagnosis is Dysautonomia [dis-aw-tuh–noh-mee-uh], a disorder of the autonomic nervous system. Since the autonomic nervous system controls so many aspects of your body, it can malfunction in several different ways. This is why Dysautonomia is a “blanket-term” for a number of specific conditions related to autonomic dysfunction. So what is my specific condition? I fall into the spectrum of both POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neurocardiogenic Syncope). These two often coexist and are treated identically. Read more
This is a personal health update for those who are interested.
What’s going on? Near the end of September I began experiencing a flare in symptoms related to my Dysautonomia diagnosis and passed out on October 15th. While this was the first time I had fully passed out, I had come very close on other occasions and knew this was the result of my illness. After passing out, the flare continued to build over the next week and landed me in the ER on October 24th following three days of increased shortness of breath, chest tightness, dizziness, and the like.
Yesterday (Nov 1st) I had a tilt table test that was positive for autonomic dysfunction (Dysautonomia). While this was a diagnosis that I already had been given by my own doctor and Dr. Grubb (a Dysautonomia specialist) , we had little testing to back up the diagnosis and little information on exactly what form of Dysautonomia we were dealing with. My doctors had mainly come to this conclusion through examining my symptoms and ruling out every other possibility.
What caused this flare? It’s difficult to tell. Flares like these can be brought on by any number of factors including weather change, stress, travel by airplane, emotional difficulty, and countless others. I did travel by airplane recently and the weather has quickly changed from summer to autumn; this could also be a delayed response to the emotional distress of losing my father earlier this year. More than likely, it is a mixture of multiple triggers.
Is this permanent? This flare will definitely be short lived, as most flares are; it will likely last a few more weeks, gauging by how I feel at present. As for the condition as a whole, my doctor is confident it will improve. While it will likely be something I have to be mindful of throughout my life, it is unlikely that it will always be as severe as it is and my doctor has assured me that I do still have a great deal of hope for a more “normal” life. At this point we are simply looking for the best approach to my particular situation and manage my symptoms.
Are you upset? No. Actually, I’m relieved. While this flare has been difficult, to say the least, the increase in symptoms has allowed us to find more definite answers. Other tests had been performed when my symptoms were less severe or performed poorly altogether (This actually wasn’t my first tilt table, but my last one was botched); and while my Dysautonomia was confirmed by Dr. Grubb earlier this year, there were still a lot of unanswered questions. It may seem strange to be relieved by a test coming back positive, but this is a common paradox of long-term chronic illness. After 6 years of intense testing and searching for answers, you come to a point where knowing is always better than not knowing. Despite my symptoms, I have countless tests come back clear. And while hearing that nothing is wrong is usually good news, I’ve had one too many doctors tell me, “You’re healthier than I am!” upon receiving my test results. That’s not helpful to hear when you feel the furthest thing from healthy. You start questioning everything and wondering if your illness is all in your head. That’s why having a positive test result is relieving, because it says that what I’ve been dealing with for the past 6 years is real. It’s valid. There are finally numbers to back it up.
So in a way I’m thanking God for this flare, despite the fact that it has me laid up in bed. Because it prompted a big step in the right direction and got me to finally retake that tilt table test with a more competent medical team. Once again, He is working everything together for good and I am grateful for His continual providence.
“As I sat by his bedside, he slept. Between the cancer spread all throughout his body and the many medications, he slept more often than not. He seemed to wake every four hours or so, usually in need of more meds. It was during these short times that we were able to communicate. He had been disoriented and hazy all week and his speech was failing. We weren’t sure he even recognized us most of the time and he didn’t often reply, but we were taking every opportunity we could to speak to him. And today, whenever he awoke, his eyes were wide open and he put a lot of effort into his words. As if he knew that this was his last day.
He opened his eyes and saw me, sitting by his bed with my red and puffy eyes and he gave me that father look. That look so full of quiet emotion that I can only imagine he gave me the very first time he held me on the day I was born…”
It’s hard to believe it was March when I began writing these words. Harder still to believe that so much time has already passed since that painful February day when my father passed away. I’ve written about the happy. The sweet moments, the engagement, the wedding. But today it’s time to write about one of the most heartbreaking days of my life; and that’s an easy thing to put off. In fact, by now you may have forgotten there was even going to be a 5th part to this series.
We had talked my times before his death about the importance of hope. The importance of knowing that because of the faithful love of Christ, no matter how painful the grief became we did not grieve without hope. And through this shared knowledge, we were each able to see God’s hand so evidently in dad’s last days.
He was surrounded by prayer and love, being read to from God’s Word each day. And to be present in his hospital room was to know just the kind of man that God had brought him to be. A man who pointed others toward the truth so passionately and faithfully, whose careful study of the Word changed so many lives for the better, and whose love for Christ did not waiver to the very end. Read more
These posts are not scheduled because I never know when the words are going to come to write the next one, hence the lengthy break in between this and the last one. This may be a long series and I hope that no one has tired of the continuation, but each of these posts are a step in continuing the grieving and healing process for me. They are as much for my benefit as they are for anyone else’s, and I hope you will continue to humor me.
The two weeks leading up to the wedding are a blur in my memory. I recall dad being admitted to the hospice center after an intense blood sugar spike due to medication effects. Mom feared putting together a wedding and funeral in the same week and I began wondering if my grandfather would be walking me down the aisle. He was there a few days while they got his sugar under control and he and mom got a crash course on insulin injections. Somewhere in the course of all this we rang in the new year and I had my bachelorette party. Read more
After spending an entire day attempting to choose a wedding date, we had finally tentatively decided on January 9th. But there were still many things to get in order, including figuring out if my best friend (and maid of honor), Kayla, who lives a thousand miles away (literally) would be able to make it into town. On Friday morning I called her and she assured me she would make it work. We chatted a little longer about everything happening with dad, wedding planning, and how nervous I was that dad might not even get to see Paul and I get officially engaged. She played it cool the whole time, not letting on that she knew exactly what Paul was up to or that she was very much involved in it.
SATURDAY, DECEMBER 5, 2015 | I awoke early the next morning and jumped back into planning, despite only getting a few hours of sleep. Mom lured me out of the house with wedding shopping but after about an hour or two dad called and mom told me we needed to go home because he was having a rough time. As we turned onto our road, I leaned back in my seat and yawned. “I’m going to lay down and take a nap when we get back.” I told mom. She nodded and continued driving.
We parked and got out of the car, but I stopped to grab some stuff out of the back seat. I couldn’t figure out why mom was acting so weird and waiting on me instead of just going inside. She stood at the back of the car until I got everything and walked behind me up to the front door. As I got to the front door, I was met by Paul’s handwriting and I immediately realized what was happening. Read more
“Yesterday afternoon I was informed that my brain is filled with legions and my prognosis… will likely lead me to a few weeks to months before the cancer finishes its job on me. I am not fearful and believe very strongly that the Lord is in charge and will accomplish His purpose in my life or death. I am not giving up hope but I also can handle going on to glory in His timing.” -Dad
WEDNESDAY, DECEMBER 2, 2015 | I remember the day so clearly and yet it all runs together. The day we found out that, despite aggressive treatment, his cancer had spread and his time left with us was short. It was a Wednesday afternoon in the first week of December that he sat us all down and talked to us. He told us that leaving us behind was one of the hardest things he would ever do, but that his excitement to be in the presence of God was intense. He shared his desires for us, as his children, and went over what he had designated to leave to us in his will. A pastor to the very end, he read to us the beginning of the sermon that he’d been writing for his own funeral.
His heart was overflowing with words and emotions and you could see in his face the undeniable mixture of sadness and joy. When he turned to me an spoke, his tears started up once again. “There are few things I want as badly as I want to be at your wedding.” he said, “But I don’t know if that will happen.” He told me how happy he was that God had brought Paul into my life and how confident he was that I would be loved and cared for. Read more
Walking into his hospital room that afternoon, I had no idea it would be his last day here on this earth. That morning I had taken my time getting ready and run errands before returning to the 3rd floor of the hospital where we’d spent the last week. The nurses kept telling us to take care of ourselves and rest at home, but I was concerned he’d wake up without anyone there so I was happy to know that he’d had consistent company all day.
At this point being up at the hospice center each day was becoming habit; it felt normal. And of course we knew why we were there. We knew what was coming. But none of us expected it as quickly as it came. After I had been there an hour or so, the doctor came to explain that it would be soon. “I doubt anything will happen tonight,” he said “but I think it will be tomorrow or the next day.” I asked him a few questions, thanked him, and updated the rest of the family by phone.
As I sat by his bedside, he slept. Between the cancer spread all throughout his body and the many medications, he slept more often than not. He seemed to wake every four hours or so, usually in need of more meds. It was during these short times that we were able to communicate. He had been disoriented and hazy all week and his speech was failing. We weren’t sure he even recognized us most of the time and he didn’t often reply, but we were taking every opportunity we could to speak to him. And today, whenever he awoke, his eyes were wide open and he put a lot of effort into his words. As if he knew that this was his last day. Read more
Tips for getting the most out of social media are helpful for any entrepreneur. Things like what times of the day are best to post in, interacting with your followers, or running great giveaways. But one tip I’ve always struggled with is curating your personal Instagram feed. If you’re a fellow Instagramer and entrepreneur you’re likely familiar with this concept. It’s all about styling your posts to match your overall image and keeping your feed cohesive. And while I see the purpose in that, especially for an account dedicated to a single business/brand, I also see a problem when it comes to your personal profile.
If you, like me, post all of your endeavors from a single profile, it can be difficult to know which path to choose. For a long time I struggled with how hard I ought to work to curate my feed or whether I should even try. It’s all too easy to promote the highlights of life and fail to give evidence of the messier realities. And I don’t want to add to that problem by overvaluing this concept of having a impeccably designed social media profile 24/7. I mean… who has energy to make that kind of thing a reality and still live life? And if you can’t do both, isn’t the choice obvious? Maybe it’s my chronic fatigue talking, but even if I wanted to I just don’t have the energy to put my life through that kind of extensive filter. Read more
I want to write more. To blog more. There are enough blog posts rolling around in my mind to fill a book, but every time I sit down to spell them out I sit here staring at this blank page, wondering where to start. I want to blog more, but I hate blogging schedules. Why should you write if you have nothing crucial to say? Why speak just because it’s expected? I’d rather be prompted by a stirring in my heart than a scribble on the calendar. Then again, maybe if I had a blog schedule I’d be more apt to get these thoughts written. Or perhaps I’d do well for a week and then fall back into the spontaneous appearances and lengthy hiatuses that have been my blogging as of late. Schedules and chronic illness don’t play well together anyway.
So this is my rambling post. A little snapshot of my swirling thoughts. A writer has to write, after all. I don’t mean we have to write anything good, we just have to write something. Whether you read it or not, we write. It’s how we process life and without it.. well, it tends to feel a little like mental drowning. I guess that’s what makes someone a writer. I mean… there’s the grammar and the vocabulary, too. But I’m hoping those are secondary for now because I can’t promise much. We’ll call this a rough draft, okay?
I entered my 20th year this month and it’s been quite the arrival. I haven’t really had the opportunity to celebrate until this past weekend. On the day of my birthday I was in traffic court for over three hours, contesting my first ticket. The week before my 20th birthday I found out that my dad’s cancer is incurable. I hate cancer. I lost my dog to it nearly two months ago now. But dad’s not done fighting. In fact, he’s doing pretty well this week.
It’s been amazing to me how this influences perspective. In the midst of fear and wondering, I think of families whose loved ones are taken from them suddenly, without warning, and I realize that in some small way there’s a silver lining in the fact that we’ve been warned. You like to think of your parents as immortal and coming face to face with their mortality is difficult, but it also acts as a firm prompt to be grateful for every day you’re given.
It makes you grateful for every birthday you get to spend with them, even if it’s not a great one. And it makes you stop and say “I love you” more than you did before. It hurts and it’s hard. It’s a battle every day to focus on what’s holding you together rather than on what’s tearing you down. But it’s a battle that opens your eyes to blessings you would never see otherwise.
Good gluten free tortillas can be hard to come by. I have yet to find a store-bought ones that aren’t murder to my jaw. Thankfully I stumbled across a gluten free tortilla recipe through Pinterest a couple of years ago. I’ve slowly perfected it since then and I’m really happy with the results.
These are best when they’re freshly made, so I usually keep a bowl of tortilla dough in the fridge and cook them as needed. If you do this, make sure you cover your dough to keep it from drying out.
In a medium bowl, begin by adding all of your dry ingredients and mixing until they’re well blended. Slowly add your melted butter, mixing carefully to incorporate it all throughout. Add half of the water and mix again. Slowly add more of the water (it’s okay not to use all of it, it’s not always exactly a cup). At this point I prefer to use my hands to blend the mixture, this way I can really feel the consistency of the dough (plus I’m just a messy cook…). Read more