Brainfog, Chronic illness, Circulation, Compression Stockings, Coping, Faith, God, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, Mobility, Parenting, physical therapy, Salt Tablets, Uncategorized

Better days are here

The first emotion I used to feel when I woke up was fear. Fear of putting my feet on the ground to see if I could stand. It was the gauge of whether or not I’d have a decent day or if I’d struggle. Well, I’ve recently had a slew of decent and even good weeks (not days!). I no longer have doubts about putting my feet on the floor. I haven’t used a wheelchair in a while and only need my cane at night and for longer distances. I feel stronger and very hopeful.

I believe this flare is on its way out and I am so thankful for the prayers that have been said for me.

You prayed for more good days and they have been given.

I’m eager to see what my new baseline is and how my body works. My body is not what it was, but it’s better than it is has been. I’ve gone from struggling when upright, to being able to stand for almost 10 minutes. You can get so much done in 10 minutes! I may not be able to go to the grocery store yet (the thought of it still terrifies me), but I can make all of our meals. I can care for myself and then some. There are days when I even change out of pajamas. 😉

I used to lay down between work calls to get more blood to my brain, thinking it would clear the fog and that I’d be smart again. Now, I can work for longer periods. I wash my own hair, drive the kids to school, and do laundry. I’m going to let the girls keep packing their own lunches though. I think it’s good for them.

I don’t know what led to this upturn. We implemented many changes at one time, so it’s hard to tell what combination worked. I can tell you that it wasn’t the medication. My body didn’t handle the first trial of medicine well and I ended up in the hospital. Meds work beautifully for so many people. They just didn’t work for me… at least not right now.

I was surprised at how quickly my body deconditioned within the first few weeks of becoming ill. Now, I’m two months into the Levine Protocol physical therapy program and my strength is improving greatly. I take salt pills and drink extra fluids to increase my blood volume. I wear compression stockings to help me walk (they’re not pretty but I don’t get far without them). My diet has changed a lot too. Less carbs and sugar. No big meals. Lots of produce and protein. I’ll never be able to drink coffee or alcohol again. I thought this would bother me more than it actually does.  

Compression stockings are like magic feet for me. They give me strength and allow me to walk more independently.

One big lesson I’ve learned is to pace myself. I can’t do as much as I used to and that’s okay because I can do what matters. If I overdo it, I’ll be too weak to enjoy the next day. “I can’t spend my energy on that,” is the most common line that comes out of my mouth.

This past flare lasted over three months. I’ve never been sick that long in my life. I feel blessed that it wasn’t longer. I know that I’m still ill, that POTS doesn’t go away—but compared to the last few months, I feel pretty great!

This is new territory and I’m treading carefully, but I’m also enjoying every good day.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story and how I’m coping with chronic illness

You might be interested in:

The Blessings of Chronic Illness on Instagram

Recent Posts:

The Truths of Where I Am

I feel stronger and the gratitude I have for this is immeasurable. I am getting better about reading my body and learning my new limitations. My limitations are for my body, not my spirit. I need to rest several times throughout the day to be able to keep going. Once I get dressed, I rest.… Continue reading The Truths of Where I Am

Making space for my new life

In this new season of life, coffee and wine have been moved to the do not consume list. While I’m okay with that, I still miss the idea of what they represented for me: company, friends, comfort, warmth… I think that’s why I’ve been reluctant to tuck away the coffee pot and wine rack. John… Continue reading Making space for my new life

One good thing

Finding one good thing can make the world right again. Today, my good thing is very simple—cream of wheat. My stomach has been sick and my food choices, limited.  It’s been comforting to find one warm, soothing thing that I can eat. Would you believe that it’s become my equivalent for coffee and dessert? I’m… Continue reading One good thing

More than a walk

I’ve been feeling a little down lately. I think that’s normal. The world is coming alive again and it emphasizes some of my limitations. I cherish the days when I’m healthy enough to walk through the creek behind our little house. There are so many spots to stop and rest. Usually when I slow down,… Continue reading More than a walk

Loading…

Something went wrong. Please refresh the page and/or try again.

Adrenaline, anxiety, Caretakers, Chronic illness, Circulation, community, Coping, Faith, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, physical therapy, Weakness

When my body gives out, community gets me back up

The highs and lows with chronic illness are extreme. Today, I experienced both.

Physically, I was done. I couldn’t walk 10 steps without falling to the floor. After every few steps, my chest would feel like it went empty and I’d hit the ground. My nervous system needs to be completely rewired and PT is a big part of that. Yet after falling on the floor, you can probably understand why I was terrified of climbing on the bike for PT.

I broke down a bit… a lot… a lot, a lot…

I’m jealous of people who walk and stand like it’s nothing. I’m jealous of people who don’t have to plan their trips to the kitchen to get water and how they’re going to get to the restroom. I’m jealous of people who aren’t scared to be left alone for a few hours.

So, in my fear, I called Dio, my soul sister and eternal friend. She’s the one I was hitched to since the first day of high school, the one I can ugly cry with, and also the one who gave me these PJs right before my illness struck (like she psychically knew I’d be living in PJs for a while). She talked me through the worst of it. She made me feel strong and heard. She gave me permission to wig out. Then, she made me get on the bike.

While I was on that bike, a kind friend from church texted offering to get my groceries. We’re good on that front but the offer felt like a huge hug when I was at a low and scared moment. For her, it was an easy offer. For me, it was a lifeline.

And then… I finished 18 minutes of bicycle PT and I feel great. I’m a little scared to walk but I’ll get there. Hyper-POTS, the form of dysautonomia that I have will not win today.

Can you see the high? It’s not that I finished PT, even though I’m super excited about that. It’s that you can absolutely be the light that gets someone through the dark. Not just for someone who is ill, but for everyone around you wherever they are on their journey. We all need lights and I hope someone gives you as much as I’ve just received.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story.

You might be interested in…

The Blessings of Chronic Illness on Instagram

Recent Posts:

Relearning how to interact with the world when you run on a day-to-day baisis

With the world reopening and me feeling better, our schedules are getting busier again. My new limitations make things confusing to navigate. I want to say yes to taking my children to practices and birthday parties, to visiting with friends and family—but the reality is settling in that I run on a day-to-day basis and… Continue reading Relearning how to interact with the world when you run on a day-to-day baisis

The untended garden house

This is the first spring for our little garden house. It was a dream five years in the making. John worked so hard to design and build it. I researched plants and could see everything in my mind’s eye. Yet, in December, I started to feel unwell and grew sicker for the next few months.… Continue reading The untended garden house

Loading…

Something went wrong. Please refresh the page and/or try again.

Chronic illness, Faith, physical therapy, The Beginning

A Diagnosis

For years, I’ve known something was wrong. Tests were normal. Doctors would point to anxiety and a vitamin deficiency and I’d be on my way. I’d tell John, “When I get to the other side, I’m going to ask God what this was. I have something they can’t figure out.”

Two days after Christmas in 2020, my first major flare-up hit. I went from walking/jogging two miles a day to being completely wiped from packing school lunches and sitting on the floor in my house to rest while walking from room to room. I’m usually fine when I lay down or sit down, but weak and dizzy when I stand or walk. My heart has a beat all its own and my blood pressure is playing a game of “how low can I go.” My body temperature does not regulate well so I’m either swaddled in a heating pad or throwing extra layers on the floor because I can no longer sweat. My anxiety can be my biggest prison. I have good hours and bad hours. Moments where I can walk to the car freely at a good pace, and moments where I cry to John asking, “Is this the point where my life changes and I’m not okay anymore?” Because my arms are too weak to lift wet towels from the dryer and I can’t stand long enough to make dinner so I’ve placed resting stools next to the stove and sink. This has evolved to where I need a cane and sometimes a wheelchair.

This flare-up provided the opportunity for a diagnosis, the comfort of knowing what’s causing this, and connecting with a community who also has this ailment. I have POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia. Basically, my automatic nervous system is not working correctly. Example, when you stand up, your blood vessels automatically contract to keep your blood from pooling in your feet. Mine don’t do that, so my blood pools in my lower extremities. This means that a lot of my body is not getting the blood and oxygen it needs so my heart works extra hard to compensate for this and I become very weak. Another layer to this, I have Hyperadrenergic POTS (Hyper POTS). A form that is usually genetic, comes on slower, and is harder to treat. Some people with dysautonomia are bedridden, some live “normal” lives.

Here’s a video that explains my dysautonomia – 

What’s next:

There’s no cure for dysautonomia so they focus on identifying a cause and treating symptoms. We hope this is a flare-up, so at some point it may dwindle and I may regain a lot of what I could do before. I don’t know how long this flare-up will last or how many more are in my future. For treatment, doctors are exploring a combination of medications, diet changes, salt and hydration to increase blood volume, and physical therapy to push me and strengthen my legs.

Silver linings:

  • Usually (but not always), when I lay down or sit down, I function like a totally normal human being. It’s like I have multiple personalities and my healthy persona resurrects in relaxed positions which is an amazing respite.
  • I am blessed to work from home and have a job where I can sit all day. What’s more, working is an amazing outlet where I feel normal and useful.
  • I have brilliant doctors with good souls who care for me and love me through this.
  • I have an AMAZING husband who has taken over the household chores, holds my hand when I’m so frustrated by what I can’t do, and loves me independently of what I can do to make his life easier (because I’m not helping in this arena right now.) Our marriage is like every other, good seasons and tough ones. This current challenge has strengthened our relationship with kindness and humility. Words can’t express how lovely is his soul.
  • On days where I can’t do much physically, I can do a ton spiritually. I have a prayer list and I pray for you. Coincidentally, I just joined a healing prayer study through my church. The timing couldn’t be better.
  • My children are learning to do more around the house and be more independent, selfless, and compassionate. I’m VERY proud of them! But to be honest, parenting while being weak and stationary is hard. I’m figuring this out.
  • My three best friends, mom, sister, aunts, and cousins are all in the medical field. So, I have the best call-a-nurse/doctor line possible. And they are so much more than that. They are my sanity and some of my greatest loves.
  • Most importantly, this draws me closer to God. If you know me, you know that I “might” be a perfectionist who likes things to run at optimal performance. Well, I can’t physically make that happen right now. I have zero control- but God has total control. I trust in Him and His plan. If this was all to remind me that God should be the priority in my life, it was worth it.

I want you to know:

I had to think hard as to whether I’d share any of this and have a lot of reservations and even fears about doing so. In the end, I decided what good does it do if I learn from something but don’t share it.

Praise God for what we know and what we don’t. Praise God for love and hope.

Recent Posts:

When your identity is stripped away

Who are you? Your gifts, relationships, the roles you play? Chronic illness (and any trauma really) will rob you of everything on your list at one time or another. It will take all that you thought you were, shatter it, and leave you to rebuild yourself in the light of humility. Go ahead, scratch off each item… Every. Single. One. I didn’t realize how vital being smart was to my identity until the brain fog hit and I had trouble keeping up at work. I don’t feel like I’m a capable parent on days when my daughters… Continue reading When your identity is stripped away

“I’m gonna see a victory”

This weekend, we went back to church for the first time in over a year.  It was everything I could have hoped for. The energy of the sanctuary. The joy of seeing our church family. I can’t believe we’ve done without this for a year, and a tough year at that. I’ve been a bit depleted and really needed to be filled up. When I woke up, I wasn’t sure I was going to make it. My hands and feet were numb and I had pain and difficulty breathing when I was upright. Basically, my blood just… Continue reading “I’m gonna see a victory”

My first day alone

Today is a day I have been dreading… John went back to the office. I dropped the girls off at school and came home to a dark house. The electricity was out and to my surprise, it felt comforting. I lit a candle, let the cat inside, and sat with the dog as we watched the drizzle fall outside. I didn’t feel alone and I didn’t feel scared. All the what if’s dissipated. (What if I need help? What if I have a bad day? turned into… I am fine. Today is a good day. Even if… Continue reading My first day alone

If God asked me if I wanted this path, what would I say?

I imagine God asking me, “Would you like an easy and beautiful life where your spirit grows a little, or would you like a challenging life that reshapes how you see the world? Either way, I’ll be with you.” I’m fairly certain that I would have responded, “Easy is good. I can grow a little.” Maybe that’s why this wasn’t my choice to make. Sometimes, I want off this lifepath. I want my old body back with all of its freedom and abilities. Still, I know what’s more important than my physical healing is my spiritual healing.… Continue reading If God asked me if I wanted this path, what would I say?

Better days are here

The first emotion I used to feel when I woke up was fear. Fear of putting my feet on the ground to see if I could stand. It was the gauge of whether or not I’d have a decent day or if I’d struggle. Well, I’ve recently had a slew of decent and even good weeks (not days!). I no longer have doubts about putting my feet on the floor. I haven’t used a wheelchair in a while and only need my cane at night and for longer distances. I feel stronger and very hopeful. I believe… Continue reading Better days are here

Loading…

Something went wrong. Please refresh the page and/or try again.

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Blessings in your inbox every Sunday

The Blessings of Chronic Illness on Instagram

Here’s a little more about my story and how I cope with chronic illness.

You might be interesred in: