It’s been a minute since I’ve written about our personal journey through the pandemic, but it’s not because things have been dull around here. Let’s catch up on the latest news…
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 two years, you might be wondering why is this home/DIY blogger talking about her health?
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.
That said–if you’re just here for the decor, homesteading, and fixer-upper journey, feel free to skip reading this post. Regular programming will resume as scheduled!
Now, let’s get on with it! Here are all the highlights from the last few months–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.
August – October 2021: Navigating Setbacks
May – July 2021: The Downside of Relying on Pharmaceuticals
April 2021: Deciding on Treatment Approaches
March 2021: An Update on How I’ve Been Doing
March 2021: Our COVID Anniversary
July 2020: The Post I Never Thought I’d Be Writing
Since I’ve been sharing fairly regular updates as we go, 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:
- What is dysautonomia,
- how did I get it, and,
- how are we treating it?
You can read all of those details here.
I haven’t talked much about my health journey for four whole months–but there has certainly been a lot going on. There’s a lot to catch up on today, as well as some things I’m mulling over for the future. Let’s dive right in!
Getting our booster vaccine
We kicked off November with a trip to Seattle to get our booster vaccines. If you’re a friend on Instagram or Facebook, you might have followed along with us in Stories that day. You can also re-watch those videos in this Story highlight.
We were fully expecting that I would have a flare of symptoms similar to what I experienced during the first round of vaccines (more about that HERE). So, the week before our vaccines, we worked hard to get all of our weekly chores done early and even cooked some big meals and packaged up the leftovers in case we needed to reheat food for a few days while we were sick.
However, to our pleasant surprise, that didn’t happen!
I had a headache, and a bit of an upset stomach for about 24 hours, along with a slightly sore arm. Nothing compared to Round One! What a relief! Plus, since we already had all our meals ready to go and chores done, it meant we could relax for the weekend…something we really needed.
A checkup with the specialist
At the end of November was also my scheduled checkup with my dysautonomia specialist. We started by going over the results of the tests he ran back in August.
The purpose of those tests was to rule out any other reasons I might be experiencing dysautonomia. That’s called “secondary dysautonomia”…when there’s an underlying medical condition that’s causing the dysautonomia to occur. Then, once the condition is treated, the dysautonomia is cured. For example, one possibility includes a tumor that can occur on the adrenal gland. Those tumors are usually benign, and once removed, the dysautonomia will go away. Wouldn’t that be something great?!
But, no, I don’t have that.
So, we’re basically left at the place where we started, and have found no underlying medical issue that’s causing the dysautonomia. This means that I have “primary” dysautonomia.
The tests also revealed that I am right on the borderline for early-stage Sjogren’s Disease. Like dysautonomia, Sjogren’s is a bit of an unknown in terms of why it occurs in some people. Also like dysautonomia, the onset is often following a viral illness.
Sjogren’s is an autoimmune condition where your body’s immune system gets confused and starts to attack itself. Those attacks are primarily focused on the moisture-producing glands of the body, like the eyes, salivary glands, etc. It’s a progressive type of degenerative disease, in the same family as rheumatoid arthritis. This means that, over time, the symptoms become progressively worse–especially if left untreated.
Based on the tests, I’m in a borderline place where I don’t have any of the antibodies in my bloodstream that would indicate the full blown disease, but I do test positive for some of the early-stage biomarkers. Here’s a more detailed article that talks about early-stage testing.
The treatments are focused on suppressing the immune system, and since that’s not so ideal, for now, we are going to hold off and re-test in a year to see how things are progressing (or not). Until then, I’m using lubricating eye drops to help with my dry eyes, and I’ve been referred to a neurological ophthalmologist.
We’re just going to take this part of the journey in pieces as it develops since so much is unknown at this point.
Working hard at rehabilitation
With the news of the Sjogren’s setback, it only furthered my commitment to working toward my rehabilitation. You’ll recall from the previous update that I am spending a LOT of time trying to increase the strength of my heart and its stroke volume.
I’m also very committed to building muscle mass in my lower body. This has been shown to help some patients since increased muscle acts as a sort of compression system to help blood pump back up to the heart more efficiently.
So, squats and lunges are a big part of my life!
All of these workouts and therapeutic efforts, however, zap my energy and make it hard for me to do much else. My hope is that we’ll reach a point where my symptoms come under control, and I can find a healthier balance to be able to do more than just exercise for hours each day.
Until then, it explains why I haven’t been writing quite as much.
A prolonged illness in January
At the beginning of January, I thought I was suffering from allergies. In January? To what? I had no idea. That’s not a time of year that usually brings on allergy symptoms for me, but something “upper respiratory” was happening.
It got progressively worse and worse, and after about 10 days, I wasn’t able to get out of bed with a horrible sore throat, ear ache, muscle aches, headache, dry cough, and mild fever. Rob also had a sore throat and a lot of fatigue. It dawned on us that this really didn’t feel like allergies anymore, and that, more than likely, we had picked up Omicron.
We’ll never know for sure, though. Since we were snowed in at that time, and I had no reason to leave the house, I didn’t bother to get tested to confirm anything. Already having been vaccinated and boosted, there wasn’t a lot more to do except treat the symptoms and wait for it to pass. Rob felt better within just a few days, but it took me about a month to get back on my feet.
Whether it was Omicron or something else, it doesn’t really matter. But the month certainly set me back, and I spent all of February just trying to get my workouts back on track.
Two years, and a huge achievement!
Last Friday marked the two-year anniversary of when we got sick and our whole life changed. There is no question that this has been the most difficult “renovation” project I have ever undertaken.
If you’ve been keeping up with my progress, you might recall that after the Standing Up to POTS fundraiser in October, I set a few goals for myself. One of those goals was to be able to run a mile…something I wasn’t sure was even going to be possible for me again.
Well, on December 30th, I did it!
Mind you, it was a sloooooow jog (13 minutes 56 seconds), but that doesn’t bother me one bit. I managed to stay upright and keep putting one foot in front of the other for an entire mile!
It was only a matter of months earlier that I couldn’t even get out of bed. Doctors were telling me that I needed to get used to the idea of living my life in a wheelchair. Even though everyone was hoping for a better outcome, I was constantly reminded that there is no cure for this disease….this was the life I needed to accept.
To go from that mindset to jogging a mile…well, it feels a little bit like a dream to me.
And let me just tack on one more thing………
On March 1st, nearly two years into this journey, I ran an 11-minute mile!
Did you read that right?! Not only did I accomplish one of my goals before the end of 2021, but I have been able to take nearly 3 minutes off my time as I continue to push hard with my rehabilitation efforts. Who knows what will be next!!
If you hear nothing else, hear this…
I won’t sugarcoat this. We have walked through some real darkness during these past two years.
But, adversity often has a way of helping you grow in ways you never imagined. That has certainly been true for us through this journey.
Whenever I post one of these updates, someone inevitably messages or emails me something along the lines of “I’m so glad you’re feeling better”. But I think it’s only fair to clarify…especially for anyone reading this who is also suffering from a chronic illness…that I don’t actually feel much better. At least, not in the physical sense.
We have learned a lot over this time about how to properly manage my symptoms so that I’m able to do a little more than I could before, but I’m not doing nearly a fraction of what I could do before I got sick. And, while I’m doing these few things, I still feel sick and deal with my symptoms during that entire time.
I just choose to do them anyway (when, and as best as, I can). Not because I feel “better”, but because if I don’t do things through the pain, then I’ll be doing nothing for the rest of my life. That’s not what I want, so I’ve made a different choice.
But, nothing about it is easy.
When I talk about the achievements I’ve made on the treadmill, I don’t go into the depths of how challenging that really is. Maybe that’s a mistake, because I worry that someone else managing POTS, or another illness, might think there’s something wrong with what they’re doing. So, to put that thought out of your mind, I’ll say it again: There is nothing easy about my rehab efforts. I don’t have any secrets or special abilities.
I simply keep going. I have made a choice to stand up in the face of adversity. And, I refuse to give up.
There are days, for example, when my workouts are interrupted by rounds of vomiting. But then I get back up and keep going until I finish what’s on the schedule that day–no matter how long it takes. There are a lot of days when I sit on the floor sobbing after a workout because I am 100% emotionally and physically exhausted from the effort it took to finish. There are a lot of days where I can’t do anything except get through my rehab exercises…and I mean that literally.
I am incredibly, incredibly blessed to have a partner who is willing and able to pick up the slack and help me. I honestly don’t know what I would do without him. I’m very aware of what a privilege it is to have someone else beside me who can do the things that I can’t manage.
But he can’t do the work for me (no matter how much he would like to). I have to keep my commitment to myself and my health. I have to, often times, force myself to go do the rehab exercises…no matter how terrible I might be feeling. That’s all on me, and it’s a level of “hard” for which I don’t have words to express.
When it comes to navigating these challenges, I don’t do it perfectly, but I keep getting up and putting one foot in front of the other because forward progress is still forward progress, no matter how slow.
So, if you’re struggling through a dark chapter of your story right now, let me be the first to tell you–I get it. You are not alone. Please, please don’t give up. Things are always as hard as they will ever be just before they start to get better.
Do you love hunting for vintage treasures as much as I do?
Get my free vintage & junk hunting journal
Let’s be email pen pals! Sign up to join our community, and get your free printable PDF Vintage Hunting Journal. This is so good!