I can’t see clearly now…

When my “Facebook perfect” world imploded back in 2017, I decided to post only truths from then on. If me sharing my experiences could help even one person, then it was worth it. So you’ve seen some pretty raw, emotional posts if you’ve been following me on social since that time.

THIS post, however. This one has been nagging on my heart since I started trying to write it yesterday. And I couldn’t fit it into the constraints of a social media post…

If you’ve known me for a long time, you probably know that I’ve had awful eyes my whole life. If you’re new here, here’s an attempt at a cliff-notes version:

I was born with progressive myopia (progressive near-sightedness). I had my first pair of glasses around 18 months old, and until I was in my 20s I was getting a new glasses Rx every 6 months. Then it slowed down to every year. There came a point that I had to wear contacts and glasses together because they didn’t have either in a prescription high enough by itself to correct my vision. The best they could EVER get me to was 20/30 with both eyes combined.

Then in 2013 I had lens implants in both eyes and LASIK on top of the right. My Rx in diopters prior to surgery was -12.5 in my left eye and -20.5 or some ridiculous number in my right eye. After both surgeries I read off the 20/20 line for the first time in my life!

I was told the surgeries would set me back to square one so I could wear normal prescriptions again when the time came for needing correction. I made it 3 years before I had to start wearing glasses “sometimes”.

I was also told the implants would increase my risk of developing cataracts sooner than normal.

In the coming years I would learn that my retinas were thinning dangerously, due to the football shape of my eyes with my insanely large prescription. I developed mild dry eyes with my Sjogren’s diagnosis. And I started showing early signs of cataract formation.

Yesterday I went to a new doctor at the direction of a friend who works in the eye business, where I got to actually SEE for myself the damage being done to my eyes, because they have some amazing technology in their office. I saw how dangerously thin my retinas are (especially my right), learned that my cataracts are worse and I’m likely to need surgery within 5 years (which will be complicated by the dangerously thin retinas), and I’m borderline legal to drive. I also had it explained that I will never be able to see what other people see with my same prescription because of the shape of my eyes (the cones in my eyes are spread out too much to ever create a clear object to look at). This last part was completely new information.

I knew these things were a risk. And yet here I sit, not knowing how much longer I’ll be able to drive and when I’ll need another risky surgery on my eyes. And I’m only 42.

I’m having a rough time with this information. As if being a human and a mom wasn’t stressful enough, life has thrown us some major curveballs and this just adds more stress.

My word of advice? Take care of your eyes. Don’t fool around with them. I’ve never been lax in the care of my own eyes because of all the hardships I’ve had. And I certainly don’t plan to take what I currently have for granted, because I don’t know how quickly things will continue to change. I’ll go back for another check up in 6 months – yep I’m full circle back to the every 6 month check ups – and hope for the best.

Stress is no April Fool’s Joke

As I sit here on the eve of April Fool’s, I think of what a joke life has been playing on me for years…

I used to pride myself in how busy I always was. I literally did it all. I guess not much has changed, really, but now I’m not so proud of it as I am just exhausted.

I keep thinking I’m gaining ground and then something happens that puts me two steps back again. I’m sure you know the feeling. We just tend not to talk about it. It’s that hush-hush thing we don’t mention, right? We shouldn’t talk about how stressed we are. We should be smiling and posting pictures on social of our wonderful life like we’re trying to keep up with the Joneses.

I’ve lost just over 20 lbs of my stress weight, and silly me I thought that as I lost weight, my body would be feeling better. But instead, for over a week I’ve been on the verge of an autoimmune flare. Almost 20 years ago, unbeknownst to me at the time, I started having autoimmune issues with a reactive arthritis that crippled me with pain and I missed a lot of work. I would have random joints flare up and be in incredible pain trying to get out of bed in the morning to get ready for work, only to feel like every bone in my feet was broken and I’d have to call out sick.

This past week I’ve had random joint pains again. Previous episodes like this sent me to the ER and urgent care in 2019 and 2020, but this week I haven’t progressed to the severity of those episodes, thank goodness. I have been so scared that it’ll happen again any moment, though… Chronic illness creates a lot of fear. And a lot of stress. The rest of life’s stress tends to seem unbearable when it all stacks up.

Some days I feel like I could conquer the world – those are the days I complete a bathroom remodel or replace a sump pump. I could reenact the scene from Wonder Woman when she emerges from the bunker on those days. Other days I could curl up under the blankets and stay there for days because it all seems like too much. Can you relate? I’m pretty sure many of you can.

So why can’t we talk about these feelings? Why do we have to pretend they don’t exist? Frankly, I’m exhausted of keeping these feelings to myself. I’m a great listener, and I’m always open whenever anyone else needs to talk, but I never want to reciprocate. I don’t want to put my worry on others. I don’t want to admit I can’t always handle it. I don’t want to seem weak. I don’t want to talk when I’m crying! But…I don’t think of others as weak when I listen to them! I don’t feel like others are burdening me! So why do I feel that way myself? Maybe it’s the societal norm. Maybe it’s my history of being bullied and hidden lack of self confidence. Maybe it’s something completely different or all of the above. My point is life is hard. We all live hard. We shouldn’t be ashamed to talk about it.

So find something to joke about in the next 24 hours. Something to lighten the mood a bit. But realize that we’re all in this tragic comedy together. ❤️

Should have named this blog Autoimmune Mama…

Stress sucks. There’s no other way about it. It just does. And those are very highly medical terms. Stress sucks.

I have worked in healthcare for over 20 years now in some capacity, but autoimmune diseases were not my specialty, so I didn’t know a ton about them. I’m learning, for sure, due to personal experience, and now I’m devoting education to it on purpose. Many autoimmune diseases are triggered by stress. Who knew?

In the last couple years I’ve been piling on the autoimmune diagnoses, and have tried several medications. It’s not fun trying new medications when you’re prone to side effects. While the meds may be doing some good, they cause more problems and can’t be tolerated. One last fall caused blurred vision, and since I have a long history of ophthalmological problems, I decided it was probably not the best idea to continue that particular medication. The two most recent meds caused me to swell up like a balloon and lose more activity tolerance than I had already lost from my disease process itself. So for fear of causing rare heart related side effects, it was time to stop those medications too. Now I’m on nothing, and it makes me a little nervous.

So I lie here wide awake with discomfort that I just read is common with my latest autoimmune diagnosis, Spondyloarthropathy. My neck is on fire, my left hamstring is on fire, my right shoulder is on fire. My boyfriend is snoring. The dogs are snoring. And I lie here awake, intermittently grabbing my phone to research another question that goes through my head, because if I do fall asleep anytime soon I’ll forget my question until another time when i won’t have the time to look it up. I do a lot of PubMed searches at about this time in the morning more often than I’d like to admit.

I wish I could go back and teach younger me to be more keen on stress management and pay attention to her body more. Had I done more to prevent stress and avoid foods that triggered my symptoms, maybe I wouldn’t be in my current mess. My advice to anyone reading this? Listen to your body. If you don’t feel well, search for an answer, and know that it may not come from a traditional source. Be open to treatment, even if it means you have some lifestyle changes to make. I used to call myself a “carbivore” until I realized the carbs were a trigger for me, since I essentially have a celiac type of response. Now I don’t really miss them, but it took me nearly 20 years to realize that they were a problem for me and be willing to make changes.

What changes would you be willing to make if it meant you’d feel better? Ponder that thought. Comment if you wish. While you think, I’m going to start another Calm app story in hopes of getting back to sleep…

Finding motivation

Do you ever just feel like sitting on the couch with a bottle of wine (yes, I said bottle) and a straw and a comfy blanket and just saying eff it?

Yeah, me either 🤷‍♀️

Adulting is hard. Mom-ing is hard. Parenting is hard. Living is hard some days.

Some days I yearn for the innocence of my youth. Those days were so much simpler. My parents worked and supported our family. My sisters made me sit on the floor while they got to sit on the couch. I chased the dogs around our 40-acre property, over and under tree branches, through mud. I made families out of everything – and I mean EVERYTHING. Rocks, corn cobs, tendons off of deer legs when we processed the harvest at deer hunting time… you name it and I probably made a family with it.

In my adult life I’ve made families and they didn’t stick quite as well as my rock families did. I had enough practice, you’d think I could have gotten that right.

In my adult life I’ve struggled to pay bills, cried over lost friends, patients, family members, relationships. I’ve had highs and lows: insomnia, health issues, stress, success, happiness, high energy, low energy.

I’ve noticed that my own children don’t seem to have that same carefree youth that I had. We are always rushing about, they don’t get as much time to play and be kids, they don’t spend nearly enough time outside.

All my best laid plans to exercise regularly and be motivational to others get derailed by injuries, autoimmune flares, depression/anxiety, mom guilt, and the occasional night where I just want to eat a pint of ice cream, do nothing, and probably drink some wine. It doesn’t mean I get to do those things, but I WANT to.

I want to be motivated to wake up early and exercise like I used to. Exercise helps my mood and prevents a lot of my pain. But sometimes I’m in too much pain to exercise, and I’m just not in the mood. I got up and pushed play this morning. The first time in 2.5 weeks. I could stress about how long it’s been. But I won’t. I have enough stress already. I’ll just pray that I can get up and do it again in the morning. Because motivation doesn’t come BEFORE you start something, it comes after and because of doing things.

On being present

I used to be a tech-aholic. I had a smart watch for monitoring my workouts, I turned on my phone running app to monitor my runs also (yes I’d monitor on my watch AND my phone, because they weren’t always the same), AND I’d strap on my heart rate monitor to keep track of my zones. And if I forgot to push the start button on my watch or phone? Let’s not even go there…

So now you get an idea why my boyfriend had to stop and pretend he was marking a day on his calendar as we walked at the zoo the other day. I had started walking the path, intermittently holding the hands of my boyfriend and/or my children as we went, and I didn’t look at my phone or push a button to mark the starting and stopping. WHAT?! You’ve GOT to be kidding me…

I NEVER would have done this in the past. I had to mark these trips on SOMETHING to get credit for it. If my watch ran out of battery in the middle of the day, I’d get VERY cranky because it wouldn’t track my every move! I mean, why even walk anywhere if you can’t track it?!

But in the midst of my autoimmune troubles lately, I’m really working on decreasing my stress and just being. Being present, loving, breathing, laughing with my children, not even getting pictures of EVERYTHING they do to chronicle our lives. I realized after tucking the kids into bed tonight that I haven’t taken pictures of them in two days. I’ve just been with them. We cuddled on the couch, we read books, we giggled. It’s been wonderful.

I’m still working HARD to have this become the norm. My stress level has got to decrease BIG TIME! It’s the only thing I can really control right now. I can’t control much in my life, none of us can, but I CAN control how I respond to things. And I want to enjoy the days I have with my kids. I think it’s safe to say we’ve enjoyed the last few days, even though I have very few pictures to prove it. You’ll have to take my word for it. Or theirs. 🙂

Tired of being tired

Some days are better, some days worse, but in general I’m so tired of waking up and feeling like I need another week of sleep.

This chronic fatigue business is for the birds. If I didn’t have insomnia to go along with it, maybe it wouldn’t be so bad. But waking up today feeling like I was swallowing broken glass, being a snot factory (so I know I’m getting sick yet again), having a hard time holding my hair brush to brush my hair, and feeling completely wiped out, I’m feeling a little defeated. So what better thing to do than journal this with a poem, right?

I’m tired of being tired….

I’m tired of being tired.

I’m sick of being sick.

I just want to be normal again.

I wake up in pain.

I go to bed in pain.

Same shit, different day.

I was a runner.

I lifted weights.

People considered me strong.

Now it hurts to curl my hair.

Now it hurts to lift a gallon of milk.

I don’t consider me strong.

I’ve always been motivational.

I’ve always helped support others.

I never asked anyone to support me.

Now I’m tired of being tired.

I’m sick of being sick.

And I fear I’ll never be normal again.

Hope y’all are having a better Friday than me.