Living With Dysautonomia – July 2021 Update: After a Bit of Silence

Living with dysautonomia

Living with a chronic health disorder is not a linear path. Each month, I wish that I could just chart the incremental forward progress we’re making, but that’s not how something like this usually works. There are ups as well as downs. This is our real life that I’m writing about, and so the story doesn’t always go the way I think it should. It’s time to catch up on what we’ve been dealing with this summer.

If you’re a new friend, or you’ve missed some of the previous posts where I’ve shared about what we’ve been going through over the past year-and-a-half, you might be wondering why is this home/DIY blogger talking about her health?

Valid question!

But truly, this blog is an online journal about our life and home. After what we’ve experienced, it has impacted every part of our life, as well as how we manage our home and little farm. We cannot separate the two because living with dysautonomia has become part of our family’s story.

It’s my hope that sharing our experiences as we learn to live with this condition might help someone else. If that happens, then it’s all been worthwhile.

After we shared our first ever update, the response truly overwhelmed us. So many people are living with chronic health issues, and we even heard from a few people who are also struggling with dysautonomia just like me.

After such a positive response, I decided to continue to share regular updates as we go along. At least, for a little while. Again, if it can help someone else–I’m in!

In an effort not to repeat the story of how we got here, I’m providing links back to previous posts (below). My goal with each new post is to try to share a more in-depth part of our story, as well as a monthly update on my progress (we hope!).

That said–if you’re just here for the decor, homesteading, and fixer-upper journey, feel free to skip reading this monthly post. Regular programming will resume as scheduled!

Now, let’s get on with it! Here are all the highlights from last month–both in words, and photos.

Disclosure: This is not a sponsored post, and I have received no compensation for sharing anything that follows. Some links within this blog may be affiliate links, and I might earn a commission if you make a purchase through that link. This usually amounts to cents, not dollars, and helps to support the projects featured on this blog. I only recommend products from companies that I have found to be trustworthy. Read my full disclosure here. 

Additionally, what follows is a glimpse into our family’s personal experience with dysautonomia. Nothing shared here should be interpreted or used as medical advice. Due to the intimate nature of sharing our experience, we will certainly be omitting some details that are private, so you are only reading the part of any given story that we have decided to share. Please do not base any of your decisions on our experiences. Always consult your doctor about your personal health issues. 

THE BACK STORY

If you’ve missed previous posts where I’ve shared about how we got here, these links will help to catch you up.

April 2021: Deciding on Treatment Approaches

March 2021: An Update on How I’ve Been Doing

Since I’m planning to share updates monthly (hopefully) for right now, I don’t want to bore anyone by repeating the whole back story each time. However, if you’re unfamiliar with our story, you’ll probably have some questions. The three biggest questions are:

  1. What is dysautonomia,
  2. how did I get it, and,
  3. how are we treating it?

You can read all of those details here.

You can see past posts about our COVID journey here:

How we continue moving forward with the challenge of dysautonomia
May ’21 Highlights: Way back in May, we re-started our mudroom/laundry room renovation. This was the project we had to stop last year when we became infected, and it meant a lot to kick it off again. You can catch up on that 8-week project here.

JULY 2021 IMPROVEMENTS

You might have noticed that I didn’t share any updates in May or June. I will explain…but first, let’s talk about the improvements we’ve seen so far this summer.

For starters, I have cut the use of my cane significantly. Primarily, this is due to the fact that I had been increasing my use of pharmacological treatments since sometime in April. These meds improve my orthostatic tolerance and make things easier for my heart, which means that I can stand and move around better.

However, they come with a cost…which I’ll talk more about shortly.

For now, I’ll just say that it has been nice to move around a little bit more. Mind you, this isn’t anything remotely close to the kind of activity I was doing before all this happened, but looking back on where I’ve been (i.e. almost completely bedridden for many months), it’s definitely a positive change in lifestyle.

It’s also really made a difference for me, emotionally.

Living with a disability undeniably takes a toll on your mental health. It’s frustrating to not be able to do any of the ordinary life things that you used to take for granted. It is literally a challenge for me just to take a shower, or stand at the sink to brush my teeth.

In my past life, these are things I would have done in a hour before rushing out the door to go about my day. Now, these are considered “achievements” for me. That’s a big change, and it can be so frustrating at times that it’s hard not to become overwhelmed by the sadness and loss of my previous life.

So, if I can manage to cook a meal, or prune a shrub in our garden, or arrange some flowers for our dining room table…even if that’s the only thing I can do in a whole entire day…it still feels so good compared to where I have been.

But I can’t talk about these perceived “wins” without also talking about the other side of the coin…so, let’s move onto the challenges.

Month by month - how we live with dysautonomia
June ’21 Highlights: After 8 weeks of hard work and sore muscles, we completed the mudroom/laundry room renovation in June. This was truly an emotional and transformative journey for us. Check out the reveal here.

JULY 2021 CHALLENGES

First, let me explain why I haven’t shared an update in a couple of months.

In May, I learned that someone from my hometown had passed away from post-COVID complications. She was my age. She was living a normal life and raising her family. She had “survived” the virus–just like me.

And then she died. Months after “surviving”.

This had a profound impact on me. Sadly, she’s not the first person I’ve known who has died from this virus, but something about the similarities in our lives really got under my skin.

It made me feel very vulnerable.

It scared me.

All my focus has been on trying to get better, and even though I’m well aware that I might never fully get back to my old life (the doctors are always reminding me of that fact!), I haven’t let go of my hope that I will be an exception rather than the rule.

I imagine that she felt the same way–grateful to have survived, and working hard at getting her life back. And then she lost the fight.

I guess I hadn’t really let myself consider that possibility for my own fate, and having it happen to someone I knew really rocked me.

For starters, I gave in a bit when it comes to using the meds. Previously, I have tried to get by without them as much as possible because they come with side effects–serious ones. But, I decided to see if they would, like my doctors have said, give my heart a little help…make it not have to work so hard…and maybe things could get easier. Maybe I could do more, and get stronger.

We also installed another air conditioner in July because the heat has been at record-setting highs this year. Again, my thought was that it would help my heart work more efficiently. And, it certainly does help.

And, I’ve also been trying to push myself to be more active…even when I feel miserable. One of the problems with a chronic health condition like this is that it feeds itself. You feel bad, so you do less to give yourself rest, but then you feel worse the next time you try to do something because you become deconditioned. It’s a vicious cycle of deterioration.

The only thing to do is dig deep, find some grit, and push through it. My doctor said that it’s normal to feel much worse for several months before starting to see any glimmer of improvement. That’s not something a lot of patients can get through, and so, naturally, the statistics on “getting better” are pretty poor. But I have been so determined to be one of the patients that proves them wrong. I’m really trying.

All this effort, however, leaves me with not a lot of energy to do much else. The other night, I fell asleep fully clothed, hair in a ponytail, and water bottle at my side because I was literally that exhausted. I laid down on the bed for “just a minute” to rest and catch my breath after climbing the stairs, and then I was out.
All of that is a long explanation to why I haven’t been blogging more about what’s been going on lately.
But then, on top of all of this, we visited the doctor a couple weeks ago because we worried that some of my “not feeling great” might be more than just fatigue from trying to get re-conditioned.
Unfortunately, it looks like we might have been right.
A monthly journal of our experience living with dysautonomia
June ’21 Highlights: The farm was truly in bloom this year as we transitioned from spring to summer!
Let me preface this by saying that I don’t normally blog news like this so quickly because I like to give myself some time to digest the information and sort out my emotions. We just got these test results a week ago. I am still feeling pretty emotionally raw as I’m writing this, and we don’t have all the information yet, so please read what follows with caution. 
My blood work shows that my kidney function has declined, and my body is struggling to filter waste from my blood. My doctor said that she is not used to seeing numbers like this except in elderly people who have underlying diseases…and even then, their numbers aren’t usually as high as mine.
Obviously, everyone is concerned about this. Especially us.
On the one hand, the news that my kidneys are having a tough time is not totally surprising because they are the organs getting hit with a lot of the dysfunction in my body…including having to process out the harsh meds.
Also, doctors have already seen that C19 patients are developing kidney injuries and disease at higher than normal rates. However, this is generally only true for hospitalized patients, and happens pretty quickly while they are infected.
The big unknown is why it’s happening to me…and why it’s happening now.
In December, I was experiencing pain in the area of my kidneys and occasionally had blood in my urine…but then, we made some medication changes, and it got better. According to my blood work, my kidneys were doing okay in February when we last checked. But now things aren’t looking so good.
It’s all kind of a mystery right now because C19 is a brand new virus that doctors know very, very little about. We’re all figuring it out as we go.
There are basically three big theories about what might be happening…
  1. The virus holes up in an organ, like the kidneys, and decides to set up shop there. It destroys the cells of that organ, and even though you aren’t having the typical viral symptoms, it’s still persisting in your body.
  2. The micro-blood clots that have become a hallmark of C19 are reducing blood flow…and thereby oxygen…to affected organs which causes them to fail. This is typically only determined at autopsy, so there’s not really a good way to know if this is happening with me, but anti-coagulation is part of my current therapy.
  3. And then there’s the idea that C19 causes a cytokine storm in the body, and your body’s immune response gets confused and starts to attack its own healthy cells even after the real threat (i.e. the virus) is gone.
That third one is interesting to me because it’s one that comes up a lot when discussing dysautonomia–which is also a disorder that no one knows the answers to why it happens to some people.
Anyway, regardless of why/how it’s happening, it’s scary. Over the past week, we have both been feeling a whirlwind of emotions. We’re both scared. We’re frustrated because there isn’t a playbook for the doctors when it comes to brand new viruses. They’re doing the best they can, but no one has the answers.
And, quite honestly, I feel a sort of angry sense of determination right now. I don’t want to become a statistic in this pandemic. I have a lot left that I want to do with my life, and I don’t want my future stolen from me by this experience. Although I’ve been working hard at my healing, I’m more determined than ever to work even harder now.
A monthly account of our journey living with dysautonomia
July ’21 Highlights: I was in crafting mode as we got ready to celebrate Independence Day. In addition to my patriotic mini pillows, I also crafted this grain sack star garland. Printable patterns are available for both!

MY CURRENT SYMPTOMS

When I put this list together for the very first update, it was the first time I’d ever seen all of my symptoms in list form. It was more than a bit overwhelming to see how long it was!

But, on the plus side, I can use it to keep track of when things improve (God willing!).

All of these symptoms are run of the mill for dysautonomia patients, so I’m certainly not special by any means, and there are patients who have it much worse than I do.

  • Tachycardia
  • Bradycardia
  • Heart palpitations
  • Chest pain
  • Shortness of breath
  • Hypovolemia
  • Low blood pressure
  • Dizziness/lightheadedness
  • Fainting/near-fainting
  • Tinnitus
  • Tremors
  • Difficulty walking
  • Muscle/Joint/Bone pain
  • Neuropathy in hands and feet (this is new and started in July 2021)
  • Brain fog/memory problems/confusion
  • Difficulty speaking
  • Blurred vision
  • Dry or teary eyes
  • Migraine headaches
  • Sleeping problems
  • Extreme fatigue
  • Difficulty regulating body temperature/Heat and cold intolerance
  • Difficulty swallowing
  • Nausea and/or abdominal pain
  • Heartburn
  • Vomiting
  • GI distress
  • General weakness
  • Over-sensitivity to smell/distorted sense of smell
  • Loss of ability to smell/taste (comes and goes unpredictably)
July 2021 Highlights of our journey living with dysautonomia
July ’21 Highlights: All the blooms around the farm had me inspired to continue practicing with creating large floral arrangements. I designed this one around a vintage picnic basket that I had thrifted! See more views here.

CURRENT TREATMENT APPROACHES

 REMINDER: This is a blog post about my personal experiences with dysautonomia. You should not self-diagnose or interpret anything I’m sharing as advice. Always talk to your doctor!
In June, I had a significant episode that really fired me up. I had a sudden onset of symptoms that were utterly debilitating. What started as chest pain (which is pretty frequent for me already) ramped up quickly and was accompanied by an intense headache and bright flashes of white light in my vision.
None of this is abnormal for dysautonomia patients, by itself, but it doesn’t usually happen all at once for me, nor come on so quickly.
I did what I normally do, which is to lay down on the floor. This is usually the way to calm things down and recover…I figured I would be fine in 10-15 minutes.
But it didn’t get better.
My smart watch was showing that I was actually experiencing bradycardia rather than tachycardia. Logically, that should have meant that standing up wasn’t the cause. Yet, every time I tried to get up, it started all over again. Unfortunately, Rob was working too far away to hear me yelling for him, and my phone was about 8 feet away–too far to get to with the pain I was experiencing.
I laid on the floor for over an hour and a half that day until Rob found me and got me into bed.
Once I was settled and we had started our now all-too-familiar routine of meds, fluids, and rest, I started to wonder what had happened to cause the bradycardia.
Actually, if I’m being honest, I was pretty darn pissed off in a self-determined sort of way. I was angry that no one had any ideas why these things happened to me, and the idea that I just needed to learn to live with it wasn’t sitting well with me in that moment.
If you’ve ever laid on the floor waiting for help, you’re probably able to relate to this feeling.
I think it’s a natural reaction in opposition to the feeling of helplessness created by an experience like that.
Anyhow, I happened to Google something like “longhaulers and bradycardia”, and I stumbled upon an article written by a cardiologist about the fact that many C19 longhauler patients were deficient in magnesium–and guess what? Magnesium helps to regulate your heart rate.
I ordered a bottle right then and there.
Within two weeks of taking it, I’d stopped vomiting (which had become a regular thing for me over the past 18 months). My leg pains at night had also disappeared.
When I mentioned it to my dysautonomia doctor, he did not seem surprised at all. In fact, he suggested we might even try to increase my dose over the coming months, so we’ll see how that goes.
It’s now been almost two months that I’ve been taking this supplement, and I’ve only had two episodes of vomiting. That’s a remarkable difference compared to the 3-4 times per week I’d been dealing with that symptom! However, we’ve cut back since getting the test results last week because it’s not recommended for those with kidney issues. Stay tuned for future updates.
July 2021 highlights of our journey living with dysautonomia
July ’21 Highlights: We took advantage of some cooler temperatures for a bit and did a whole lot of work in the garden this month. We found that alternating one-day-on/one-day-off with heart meds + work, followed by rest, made it possible for me to help out with some of the things I enjoy and be more active.

RESEARCH I’VE READ THIS MONTH

Science is working hard to figure this thing out, and it seems like there’s something new coming out every day. I try to limit how much I read because it can be a bit overwhelming, but if I find something worth sharing, I’ll be sure to include it here each month.

 

July 2021 highlights of our journey with dysautonomia
July ’21 Highlights: In anticipation of some projects on the horizon, I started to de-stash some of the vintage pieces I’ve been collecting over the years. I’m slowly adding them to the shop, so be sure to check that out regularly for new additions!

 

LOOKING AHEAD

We have two big priorities for August. First, we’ll be re-testing my kidneys as well as a big panel of other tests to rule out some more possibilities of what could be happening.

My biggest wish is that we find out there was some kind of weird lab error that just happened to impact all of the kidney tests. I want to hear that it was all a mistake.
I do recognize that this is a version of “denial”, and it’s a natural part of the grief process, but it’s also at least a little bit about hopefulness. Until we have a second test to confirm, I’m holding onto my faith and the hope that there is another explanation.
The other big priority for August is getting vaccinated.
This one’s tough for me. Not because I’m anti-vaccines…I’m definitely not…but because my dysautonomia doctor has told us that some of his longhauler patients have seen their symptoms get worse after vaccination. This makes sense because vaccines activate your body’s immune system to attack the invader, and if your body is already kinda messed up about what’s a threat and what’s not, it could easily be confused during vaccinations.
I had a flare after getting my flu shot last year, so we already knew this could be a possibility…but I still cried when he told us this. I honestly cannot imagine what “worse” would be like after the past 18 months that we’ve been through.
And I’m a little (or, more accurately, a lot) scared to find out.
He did say that he hopes, and even believes, that any worsening of symptoms will be transient. Meaning, it will provoke a flare of symptoms for a period of time–like what I experienced after the flu shot–but then settle back to where things were before.
On the flip side, however, he’s also seen some patients who’ve reported an improvement in their symptoms. Wouldn’t it be amazing if I was in that group?!
Either way, the vaccine is necessary. There is no debate about this. Given my current health, a re-infection would be extremely dangerous for me, and it’s simply not worth the risk. I would have done it sooner, but we’ve been waiting for the green light from my doctors. Now that we have it, it’s time to dive in and hope for the best!
For now, I’m going to keep writing these updates, so we’ll keep you posted about all of this next month.
It truly means the world to us to have your friendship and support while we navigate this part of our family’s journey. We don’t want to hide the difficult parts of our story from you, because we believe that challenges–whether in DIY or home renovations or life–are how we learn, grow, and become the best versions of ourselves. If you’ve read this far, then I’m guessing you share this belief. Some of the notes you’ve sent us have quite literally brought us to tears, and we are so grateful to each and every one of you for taking time from your day to think of us. It is incredibly humbling to be cared for by this community, and we are so blessed to have you all in our lives.
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4 Comments

  1. Thank you for sharing your struggles with us, I know you have helped so many. I am so sorry you have had to endure all of this, my heart hurts for you. Sending you so much love!

    Reply

  2. I have been visiting your blog for awhile and just wanted you to know how sorry I am about your health struggles, they are unending and so sad to read. I have my own health issues and that is why I like to keep up with other bloggers who are brave enough to share their symptoms. My health concerns are minimal compared to what you are going through. I would love to see a ray of light here. I hope the next time I read an update on your health you have improvement, even if ever so slight, it is something to hang onto.

    You have a beautiful blog and writing style. And you must have a pretty wonderful husband too. I wish you the best dear lady. Blessings to you both.
    Diane

    Reply

    1. Thank you so much for the love, Diane–it really means the world to us to have such supportive friends like you. Although this is a difficult journey, I’m so glad to have met others along the way who lift our spirits and lighten the burden. I will be keeping you and your health in my prayers! Please keep in touch–we gotta stick together! xo, Kristi

      Reply

  3. I posted a comment once but it didn’t show up, so let me try again, perhaps my error. Let me just say that I am sorry you are going through all these unending health struggles. It is so much to endure and you still find the strength to blog about it too. I have health issues myself and I find that I visit other bloggers to check on the status of their health in hopes of seeing some improvement. But my health issues pale in comparison to yours and I am so sorry for all your unnecessary suffering. I hate the long term health effects that some Covid patients have to endure. Although, my health issues have nothing to do with Covid, I can relate to others because I share some of those unusual symptoms too. I hope the next time you share a health update there is some improvement, even if ever so slight, and that it gives you something to hang onto.

    You have a beautiful blog and writing style. And you must have a wonderful husband too. I wish you the best dear lady. Blessings to you both.
    Diane

    Reply

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