Nocturnal Musings #22: Say Something…

I just don’t have the heart right now.

Nothing’s changed.

And maybe that’s the reason.

Say something…

You think you’re fine and then suddenly you’re not.

Again.

Biding my time.

Until what? Continue reading “Nocturnal Musings #22: Say Something…”

The Last Shift

If you’ve been following my blog since before October 2016 or so, you might remember that I attempted to return to work on October 24th, six weeks after my brain surgery. You may also remember that it was a complete disaster and I have been unable to work since.

But since that was a one-off failure, I don’t count that day as my last day of work. The day that gets that designation in my book is June 10th.

That’s right. I haven’t really worked in a whole year. Hence the reason I don’t even count that day in October.

What happened on June 10, 2016 was a very ill-timed fluke. Continue reading “The Last Shift”

Is My Illness My Fault?

For me, 2016 was the year of the surgeries and bizarre diagnoses. Three surgeries, to be exact, spanning over a period of four months. Once the surgeries were over, I thought that once I had an adequate recovery period, I would be back to normal. I’d be able to return to work, from which I’d had to take an extended leave of absence, and I could put the entire year behind me as a gargantuan fluke.

But it was not to be. Almost exactly a month to the day after my third surgery, I started experiencing symptoms that very quickly led to a diagnosis of postural orthostatic tachycardia syndrome (POTS). The tachycardia (rapid heart rate), shortness of breath, and presyncope (near fainting) were being caused by moderate hypovolemia (testing revealed my blood volume to be 18% below normal) and severe venous pooling (35% of my blood volume was pooling in my lower extremities; this number should be 5-10% in a normal person with quick resolution within two to three heartbeats).

Why did this suddenly happen? POTS has been linked to certain autoimmune diseases (including celiac disease, just my luck) and has been noted to occur following such events as pregnancy and trauma. However, medical science does not yet know why POTS happens. So what was going on with me? Continue reading “Is My Illness My Fault?”

Fighting Back With Love

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”

When Your Depression Is Invalidated

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”

Give Your Heart a Break

IMG_1239One more time around the sun, one more time passing through National Infertility Awareness Week as an unintentionally childless woman. I guess you could say this is my third time.

It’s an understatement to say that a lot has gotten in the way of my attempts to become a mom.

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Ready for excision surgery!

In 2014, not long after we had starting trying to get pregnant, my battle with endometriosis took the forefront. Within a span of six months, I was hospitalized, diagnosed, and had two surgeries, one of which was out of state with an excision specialist. Then recovery began, and our efforts to get pregnant resumed in 2015.

Needless to say, I did not become pregnant in 2015, and we were baffled as to why not. Continue reading “Give Your Heart a Break”

Things We Lost in the Fire

“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)

 

IMG_1123As 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”