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