Recently, I wrote a post that ended up being quite popular within the dysautonomia community. It’s actually been the most popular post I’ve written this year. I honestly have no idea why; I have read it over and over again and can’t seem to find what is so remarkable about it. When I asked my husband, even he said there was nothing profound about it. (Thanks, honey; I can always count on you to be honest. 😊) But whatever it is, I’m still grateful for the 843 hits, plus the 70 Facebook shares thus far. (That’s a lot for my blog, ok?) To those who found it worthy of reading and/or sharing, thank you so much! I hope the post was helpful to you in your own fight, or friend’s or family member’s fight, with dysautonomia.
It was encouraging to me to write because as I reminisced, I realized that I have made some decent progress since I was diagnosed in January as I’ve teased out what works and what doesn’t regarding symptom management. Things are a bit challenging at the moment because my cardiologist has been on unexpected medical leave since April (starting two days before my appointment where we were going to start Florinef) and I don’t see a POTS neurologist until July (after having waited seven months for the appointment), so right now everything is on hold and nobody is managing my POTS at all. So I likely could have made even more progress by now had things gone differently, but I’m just being patient and trying to do my best in the meantime.
But that particular post unfortunately brought up another issue that coincides all too often with posting things of a medical nature on social media: people who feel they have the right to judge you for how you’re handling your illness. Continue reading “Fighting Back With Love”
One of the worst feelings you can experience as a chronically ill person is invalidation. It’s not necessarily that others don’t believe you (although that is also a tremendous problem and a discussion for another time), but that they either don’t see or don’t understand how much your illness(es) impact your daily life. Especially when mental health plays a role in your battles.
And what makes it even more frustrating? When that invalidation comes from healthcare professionals. When, to their eyes, you “don’t look sick” enough or you don’t have “enough” chronic illnesses or you’re “too young” (no matter how thick your medical chart) to warrant feeling depressed.
I have struggled with depression for a year and a half now, starting when infertility problems really came to the forefront of my life. But those issues were usurped by far more serious problems. Continue reading “When Your Depression Is Invalidated”
I was diagnosed with postural orthostatic tachycardia syndrome (POTS) about four months ago. (Is that all? Really? *checks calendar* Blast it all. This has been the longest four months of my life.)
In a stroke of luck, my diagnosis came only a month or so after the onset of symptoms, which I inadvertently described some of here. But part of me wonders if this wasn’t the beginning, albeit still only a few weeks before things really took a more permanent turn for the worse. But since I knew what I was looking for, having heard of POTS before and being familiar with the symptoms, I went straight for the best. In another stroke of luck, the healthcare system where I receive all my care just so happens to be an autonomic center, with the most cutting edge testing available (one test I had is only performed at this center.) My cardiologist is none other than the medical director of the syncope center. So with him taking the reins, I got my diagnosis in record time.
But have I improved at all?
Continue reading “The Unpredictability of POTS”
“Things we lost to the flame
Things we’ll never see again
All that we’ve amassed
Sits before us, shattered into ash…”
Things We Lost in the Fire (Bastille)
As Esther Smith said in her excellent book, When Chronic Pain and Illness Take Everything Away, “Grief is the process by which we actively release all that we feel, question, and remember at the feet of God and the people He has placed in our lives.”
At the end of the second chapter, she poses some questions that have me wrestling with my thoughts, emotions, and feelings towards God. Questioning God isn’t a bad thing. In fact, He encourages us to come to Him with our questions, fears, or doubts. If you’ve ever read Psalms, you know this to be true!
As part of my grief process, I am going to share my answers to the questions, as you all are the people God has placed in my life. I assume the intention of that is to find help through grief from a different perspective than God’s. Continue reading “Things We Lost in the Fire”
via Daily Prompt: Denial
I’m in denial about something. Although it’s not something you’d think any person would be in denial about.
Obviously, I’m unwell. POTS has taken over my life in a bad way. I’m trying to get better, but the prognosis isn’t all that great. I may never fully recover, but I’m not in denial about it. That’s just a reality I need to accept.
I’m in denial about having a baby. Continue reading “Is the Future Even Possible?”
I’m awake since I feel a bit sick right now. Nausea has become a fairly common occurrence during my days now, likely from all the salt tablets I’m ingesting…and all the food I’m not ingesting. I really don’t care, either.
So, it’s been a bit since I really updated at all because I’ve been reblogging my endometriosis-related posts this month to spread awareness. But what else have I been up to? Continue reading “Nocturnal Musings #19: The Things You Learn”
This will be a weekly post of the most random of random questions to answer- to share my world! Thanks to Cee’s blog for being the brainchild behind this!
Ever ran out of gas in your vehicle? No, but I had to rescue my husband one time when he did, at midnight on his birthday. He was about 1/2 mile from the gas station! Continue reading “Share Your World – February 27, 2017”