You Are Not Alone

Our bodies are not meant to be perfect... Yet.

About a year ago I found myself feeling pretty sorry for myself one evening. My vision was changing every 4 months since August 2018 when it originally took a downward turn. And every time it changed, the headaches and dizziness came with it.

Each day that I waited for my new glasses wore on me physically, mostly in the evening hours when the headaches would get worse. I was grieving the loss of my healthy, unchanging eyes. I remember what I said as my husband held me: "My vision changing every 4 months makes me so angry, but now that I know this is the cause of my symptoms I know I can handle it even though I don't like it. It's the thought of it getting worse or changing in the future that I don't think I can handle."

Here we are, one year later, and my vision has changed every month this summer. Every month!

I've learned to trust myself, though. I've lost count of how many eye appointments I've had the last couple years, but every time I get my exam my suspicions are always right and my vision has indeed changed. I'm getting so good at this now that I can even predict which eye(s) has gotten better or worse. Go me!

Sometimes I have this thought that I should just become an eye doctor so I can test my own eyes as needed. It could save a lot of worry and waiting in the long run, I think. But, that is not my passion. This is my burden.

My passion is helping others through my own trials and growth to learn and grow through their own trials. And that is why I write. The drive behind my writing is a hope, maybe even a mission, to help at least one person know he or she is not alone. And so, this is my message:

You are not alone in mourning the loss of a part of you that you loved and maybe even took for granted without realizing it, until it was gone. You are not alone in worrying that things might get worse. You are not alone in holding on to those glimmers of hope you get from learning more and being helped by patient, caring loved ones and professionals. You are not alone in trying to adapt to a new normal, all while trying to balance the already existing complexities of life and current plans. You are not alone in fearing the unknown, wondering if that unknown might someday get in the way of your goals and dreams. You are not alone in your struggles.

It is in sharing our experiences and caring for each other that gets us through the hard times. I am grateful for my support team around me who gets me through the sorrow I sometimes feel.

As a wise friend recently reminded me: Our bodies are not meant to be perfect [in this life]. And that's kind of the point. To struggle so that we might grow. To feel pain so that we might know joy. To know burden, so that we may feel peace. To believe that, someday, all will be restored again.

"Every time the ache fades and smiling gets easier it's like coming up for air. We cannot recognize one without the other... The light comes, even after the ache threatens to consume..."

(Quoted from @thelindsayreport on Instagram)

Pain & Joy

My vision changed. Again. Just like I thought it would, in the eye I thought it did. Even though this has become a regular occurrence it still scares me to pieces every time.

It's not as simple as just going to the eye doctor. It's a whole process:

I notice my headaches and dizziness get worse.
I confide in Dackota and tell him I don't feel good and hate that I'm dizzy.
He suggests maybe my vision has changed again.
I tell him it hasn't even been 4 months this time...

I get up the nerve to call the eye doctor for an appointment.
They say, "Sure, we can get you scheduled. Let me just pull up your profile... Oh! It looks like you were just here three months ago. Are you sure you still want to make an appointment?"
Me: "Yes, I'm sure. I have a dizziness condition and my vision changes frequently."
I give them my new insurance information and that's that.

The next day I get a call, "Hi Staci, I'm wondering what insurance you will be using for your eye appointment next week. I can't find the information for it anywhere."
I give her my insurance information again.
"Okay, thank you! Oh! It looks like you were just here in October. Do you still want to come in?"
I'm not sure if I want to anymore. But yes.

Having to explain myself each time why I need to come in again after only 3-4 months is frustrating. I know it's not their fault, but it makes me feel like I'm crazy. And yes, there was a third phone call!

Thankfully the eye doctor knows what he's doing and validates me every time I go in. He says he can always tell when his vision changes even the slightest bit. "You must just be sensitive to it," he says. THANK YOU FOR NOT MAKING ME FEEL CRAZY.

The moment he said, "Yep. You were right. Your right eye changed just the slightest bit," a warmth of relief washed over me. Relief that I was right about what I was feeling (even after only 3 months). Relief because my symptoms are being caused by something I still have a bit of control over. I can handle having to get a new prescription every four months. But if the day ever comes when it becomes something new, something worse? I'm not ready for that.

But then when the eye doctor tells me lasik eye surgery (which I had in 2014) is probably the cause of my frequent vision changes it makes me want to cry and tell the world to NEVER GET LASIK, just in case!

It makes me feel regretful that I ever did it, wondering if the dizziness that accompanies my vision changes is caused by lasik, too.

I lean in to those feelings for a brief moment, long enough to acknowledge the hurt and uncertainty I feel. Then, I let the feelings pass and remember that I have come so far since that August 2018, when there were even more unknowns. When I felt like my eyes and brain and "normal" were all falling apart.

That was a time when doctors were throwing me into the label of PPPD (Persistent Postural-Perceptual Dizziness, which I still might have along with vision changes) which really just said "we don't know what's wrong with you but we've seen other people with similar symptoms so we will just call it something to lump you all together" category... That was crappy. So I took matters into my own hands and spent hours - painful hours, both physically and emotionally - researching on the internet what could possibly be wrong with me.

And I figured it out. I figured out that it had something to do with my eyes. And even then it wasn't just an easy fix. I saw two separate eye doctors, who gave me two very different prescriptions. I decided to trust and go with the one that felt right and ever since have experienced amazing relief from this crazy, mysterious condition, able to live my life [mostly] how I choose to.

So. I'm writing this post to process it all, but also to share what is quite possibly the most vulnerable part of my life in hopes it helps someone. I believe our most vulnerable experiences can connect us, can help us to love deeper, can make us stronger. We may find pain in hard times, but maybe we can take a piece of that pain and turn it into strength.

Being dizzy and having eye problems, whatever they are, is on my mind all. the. time. Nearly every moment of every day sometimes. That's what happens to us with trials and tough things we don't choose for ourselves.

But you know what? At the same time I'm also thinking about what a kind husband I have, what a fun dog I have, how neat it is I get to go to school again to grow and learn more about a passion of mine, what a blessing it is to have a nice home and a family I love more than anything. Somehow, if we are open and (this next part is key) LOOKING for it, the dark times can shed light on the brightest parts of life, often just when you need it the most.

So. I choose to find joy in other parts of my life to take along with me and my pain. I hope you can, too.

Also, having a goofy pup like Larke around makes everything better.

It's true what they say about dogs:

Unconditional Love.

(Both ways)

I Am The Best Person for This

There are two people who taught me the concept of believing I am the best person for this.

The first was a client I once had who, for this post, we will call John.

John was a very religious man and was once a Father in the Roman Catholic church. He enjoyed his jobs of younger years as a DJ and then florist, but I think his spiritual role was always the closest to his heart. He loved helping people and through his position would counsel people and families who were going through end of life stages.

He had a stroke pretty early on in his retirement years that left him mostly paralyzed on his right side. This greatly limited his mobility and required him to have a caregiver to help him with personal care and housekeeping. He lived many more years after that, with his mind fully intact.

He began losing more and more mobility and, ultimately, was diagnosed with ALS in the late stages. ALS (also known as motor neurone disease or Lou Gehrig's disease) is a slow loss of muscle function, 100% fatal, with few treatments to improve quality of life (http://www.alsa.org/about-als/2013-aam/).

The last time I saw him in his home before he moved to a care home was the day he taught me this important lesson. His mind was sharp, but his body was deteriorating before his eyes. And you know what he told me? He said, "You know, it's better me than someone else because other people might not have the faith that I do."

I couldn't believe it. The function of his body, his independence, and his home were about to be stripped away, and he had enough faith to, essentially, say, I am the best person for this.

The next person who taught me this lesson is Jody Moore. Jody is a certified life coach who has an incredible podcast called Better Than Happy. Her podcast changed my brain for the better which led me to join her program Be Bold. While coaching clients Jody likes to offer them new thoughts to "try on." One particular woman was struggling with doubt regarding a niece coming to live with her. She wasn't sure if she was the right person to help her niece make a life turn around. Jody suggested, "What if you chose to believe that you are the best person for this situation?"

I don't know why, in that moment, that particular phrase stuck with me so strongly, but it has truly changed me. There are many experiences in this life I didn't choose or want that I also can't change, but I can try to choose what thoughts I believe about these experiences.

For example, I have a dizziness condition that is not even fully understood at this point. What if I chose to believe that I am the best person for this experience?

Maybe I am the best person for this because I have a family who loves and supports me and I am not alone. Maybe I am the best person for this because I knew how to research and be an advocate for myself and learn what helps and what doesn't help my condition. Maybe I am the best person for this because I believe the bad "stuff" helps us see and feel the good "stuff" even more. Maybe I can be the best person for this situation by having faith that, though it is not perfect in this life, my body will be perfect and whole again in heaven someday.

For the record, believing this doesn't negate the totally real feeling and thought that "This totally sucks, I wish my eyes and head would heal." More than one thought can be true!

I encourage you to "try on" this thought with a situation in your life that you did not choose or can't control and let it grow within you to, just maybe, become true.

My New Normal

It's been over a year since I've been having visual vertigo problems. I don't have all the answers yet, but I'm happy to report that I have experienced extreme relief since the beginning of my visual vertigo journey.

I have had the really bad vertigo episodes in the past - the ones where you feel like you're dying but then things settle after a few days and you can go back to feeling like a functioning human again (BPPV). But in June/July of 2018 I began experiencing headaches and dizziness that would get increasingly worse at night. I realized later on that part of my symptoms was pressure in the eyes. I attribute solving that mystery to some extensive google research. I NEVER would have guessed otherwise my problem could be with my eyes, since having lasik eye surgery a few years prior. (Side note: If you're ever considering lasik, please please do your research to learn about all the positive negative side effects.)

I wrote my last post when I got glasses, hoping they would fix the problem. I went from feeling miserable with dizziness, headaches, and nausea to feeling "normal" again after just one day of wearing my glasses. It felt like a miracle.

For my friends who are fascinated by medical mysteries like I am... Basically, around July 2018 my vision changed so quickly and significantly from 20/20 that the symptoms were also significant. It was bad enough I wasn't sure how I would keep my job because driving made everything so much worse (50 minute commute). Turns out driving is a very visually demanding task. Getting glasses to correct my eyesight fixed the problem almost 100%. I can't tell you how wonderful those next few months were, not taking for granted feeling good enough to work.

Then, almost exactly 4 months later, I began feeling the symptoms again. My eye doctor evaluated me again and sure enough - my vision had changed. New glasses! Again.

Since then my vision has been changing pretty consistently every 4 months. So I go to the eye doctor every 4-5 months for a new prescription. There's about a 3 day adjustment period between prescriptions and then I'm good to go for a while.

One thing that bothers me most is we don't know why, all of a sudden, I have visual vertigo problems. Was it caused by lasik? Or is it a result of being predisposed to dizziness issues in general? I may never know the cause or the official name of what I have (I've coined the phrase visual vertigo myself as far as I know), but I do get to lead a pretty normal life. Sure, I have to go to the eye doctor a lot, and pay a lot of money for glasses three times a year, but things could always be worse.

Little Mermaid at Tuacahn outdoor theater in St. George

There have been many blessings to all of this. Isn't it strange how sometimes the difficult times allow us to see more clearly the good? Still, that can take time.

One of the biggest blessing to me is being able to share my story, however weird and mysterious it may feel at times. I can't speak for all those living with a chronic condition, however severe, but I can say for me, the times when I feel most fulfilled is when my journey allows me to connect with others. The most frustrating thing at times is not having people know what it feels like to have this problem. So when people take the time to listen at how crazy it all is, and how it really truly sucks some days, that's what matters. Sharing and listening with true care and concern... that's all it takes to connect to each other.

Just today I talked with a classmate who has a condition that causes vertigo episodes for her, but a whole lot of other problems as well. Specifically, she has been in chronic pain her whole life. We were rushed in sharing with each other our experiences with dizziness, but I already feel like we're friends.

We don't all have the same struggles, but we all have struggles. And how much better is it to be there for each other than to feel hopeless all on our own?

"Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place."

- Rumi

I'm Not Who I Used To Be

I used to be near-sighted. Then I had lasik eye surgery. Now I need glasses.

I used to not know what vertigo felt like. Now I have chronic dizziness issues and know what different types of dizziness feel like.

There is a point to my story.

There have been a lot of days lately that I don't feel well. There are so many words I've been meaning to write but due to a new kind of dizziness my eyes and head just haven't been able to handle much.

I honestly lost count of how many medical appointments I had this last month. Though I've never felt so completely frustrated, I've tried to keep hope and a perspective that things could be so much worse.

Turns out even a slight imbalance in one's vision can cause a whole lot of problems. The short version is I really, really hope these glasses do the trick. This is the hope I've been holding on to for weeks.

I'm one of the lucky ones. Did you know there are thousands (!) of people suffering with dizziness issues? Diseases, disorders, unknown causes... People who can't work, who can't drive, who can't get around or do hardly ANYTHING. Thanks to my sister's suggestion, I am part of an online support group and these folks have taught me many valuable lessons. One such lesson is below.

The good news is I am able to take full advantage of the good days and precious moments when they come. I am still working, breathing, and counting my blessings! I've learned to lean in to my joys a little deeper, and a little longer. I've learned that hope is very powerful and necessary to keep going, to keep learning, to keep fighting.

I couldn't do it alone. It's all about love. True love is sacrifice and selflessness. Dackota has asked me more than usual, "How can I help you," and I am so grateful for it. Caring for each other is how we get through the crap.

One of my support group members shared her experience with dizziness and said something so powerful to me, I'm not who I used to be so I work on who I am.

I think of this every day now. It was like a light bulb went on in my heart, a flicker of courage. I do believe that comparison is the thief of joy. But I never made the connection that comparing my current situation(s) to my past situation(s) can cause pain. Stop. Stop comparing! We cannot compare what things used to be like to what they are now or we will suffer. Plain as that.

Words to live by...

I'm not who I used to be... So I work on who I am.

Inhale Courage, Exhale Fear

This week Dackota and I took our little nieces, Adelaide and Claire, out on a date to Uptown Jungle Fun Park. Unfortunately I'm in the middle of terrible dizziness but  I wanted to do it anyway because I don't get to see them all the time.

My illness right now gets worse as the day progresses and various things trigger or exacerbate the dizziness: visually demanding environments, bright lights, movement, driving, etc. I lasted one minute on the trampolines and I was done for the night. But the girls were laughing and running around and having a great time and that made me happy.

I don't think kids are aware of many things we adults are. They don't understand worrying about this and that or if we don't feel well inside. What they do notice, though, is when you give them your time. According to me I was not a fun aunt that night. But grandma told me later, according to Adelaide, "No matter what we do with Staci it is so so fun!" We should be there for them, as much as we can, even if we feel crappy and scared inside. Their memories with us might last forever, but our trials and hard times will not (at least I hope not).

Adelaide goes rock climbing with her dad so we got her on the climbing section. And I had a moment with her that felt so inspiring. The last climb she wanted to do was the one all the other kids were doing. Now normally she's bouncing up and down and all around, constantly talking up a storm. But she hopped in line and was so patient, so calm waiting for her turn. I stood by, admiring her. All the other kids were clearly bigger and taller than she was but she didn't even seem to notice. She stood there with such confidence and bravery (hands on her hips!).

On most days she's a "princess" and likes princess things - wearing dresses, having pretty hair, all the girly stuff. But in this moment she seemed so fierce, I might have said she was a little warrior princess.

I recalled a quote I had read earlier that day: Inhale courage, exhale fear.

Seeing Adelaide be so brave, so naturally, I wondered why I can't do that. I can't tell you that all of a sudden I'm brave now. But I can tell you I made a goal right there to try to be more childlike! To strengthen my faith, to try as hard as I can to inhale courage, exhale fear.

This week I've realized even more that we all need hope. We all need to know that somehow, someway, everything is going to be okay. Without hope feelings of despair and loneliness can easily swoop in. Fight hard, learn what you can, and hold on to hope.

I love this little Adelaide. Parts of her remind me of myself and she makes me feel like I can be brave in the face of scary or hopeless times. (Thank you, siblings, for having kids so I can be their aunt!)

Adelaide, maybe you'll read this someday and if you do... I love you. I love you for the silly, smart things you say all the time, things I write down and want to remember for forever. You are beautiful not just because you're a princess but because you are kind and you make those of us around you feel loved and special. You tell great stories and give great snuggles. Keep being brave, my sweet Adelaide.

Us on our date. I got stabbed by her unicorn horn more than once :D

Break Out the Toolkit

This last month or so of work has been crappy. With what has felt like enormous work challenges (combined with big life events at the moment) I've felt suffocated, my body so toxic with stress and anxiety. But let me tell you, it is my support system that has gotten me through. Time out of the house with good friends, hugs and love notes from my sweet husband, family who listens and understands... I wouldn't trade my loved ones for anything. I am so reminded that we need each other.

During some of the craziness I came across this great post on Instagram:

My "toolkit" doesn't look exactly like this one and yours probably won't either. The point is to learn and add to it to prepare for those tough days.

The good news is yesterday I felt like I was finally able to breakthrough some of the hard stuff. I got in my car and, with tears of relief streaming down my cheeks, sang my heart out to the best songs.

My goal is to practice the breathing techniques I've recently learned to help me stay centered and more calm for the next difficult stretch of life that comes up.

If you're reading this and feel so inclined to share what tools you keep in your toolkit I would love to hear and learn from you.

(Also world, don't you dare throw anything else at me right now unless it is alllll positive.)