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It’s OK to be OK

A lot of time has passed since I’ve updated my blog. Back in January, I was posting all the time. I was suffering constant flare-ups at every turn and I just couldn’t seem to get a consistent stream of good days going. Now, a week into April, I feel like I’ve found some balance. I saw a quote recently that said “If you happen to be doing OK right now, that’s valid too” and it really struck me as something that isn’t talked about enough in the chronic illness / chronic pain community. We are always hurting, always sick and often get hung up on the monotony of it all, but we forget to stop and practice some gratitude and praise for the moments of doing “OK” or even good!

At the beginning of the year, I did a bit of traveling and I feel like the more I started to move about, the more my POTS symptoms seemed to give me a break. It’s always been sort of a cruel joke that exercise helps POTS but the slightest physical activity can send someone into syncope, tachycardia, or any other set of unpleasant symptoms. But for me, I started small. My first trip to Houston, I used a wheelchair at the airport because my legs were so weak and I could hardly walk across the house, let alone across terminals and through security. People were giving me advice to try walking as exercise and it sounded like the most boring thing on the planet, but I started by walking around the block one time a few days a week. At first, I was so tired, I could barely put shoes on to get out of the door and by the time I got home, I needed to lie down and recover for at least an hour, just from a short 10-minute walk. But over time, I was less fatigued every time, and eventually I started taking my dogs out, each one on their own walk, once around the block for a total of two laps around my side of the neighborhood.  I continued to practice my standing and breathing techniques from the POTS Treatment Center any time I was faced with a flare-up. My trip to Tampa in February was wheelchair free and I was even able to walk around Busch Gardens for about an hour and a half. My stamina was much improved.

The thing is, the less I started to focus on being sick, the less sick I actually felt. I’d push my body a little more each week and listen to it tell me what it could and couldn’t handle. Unfortunately, my IIH headaches didn’t let up, so dealing with daily headaches was still a part of my life… But I slowly was able to almost overlook my pain and even call it a “distraction” or “discomfort” for majority of the time. This didn’t mean my life went back to normal. I’ve still had to maintain regular doctor’s visits, a specific diet, vitamin regimen, and my individualized treatments including nerve block injections, B-12 shots, biofeedback work, and I even added in Botox in March.

Every time I’ve had a breakthrough like this before, it has been tanked by a major setback. But that was before my body was stronger. I feel like I’m better equipped to handle these moments of clarity now. This doesn’t make me automatically discluded from the conversation of chronic illness or chronic pain. It doesn’t mean that I must turn in my community membership badge and hang up my blog. I still have a lot to say! And I think too many people feel better or go into remission and don’t tell their story, taking some hope off the table for the rest of us. I don’t know about you, but I always love reading stories of people triumphing over their illness, whether it’s a temporary reprieve, official remission, or all-out healing. One of my favorite accounts to follow is @avenlylaneinspire on Instagram. At one point, she was completely wheelchair-bound due to her POTS, but now she travels all over the world. And guess what? She still gets tired. She still suffers setbacks. But she pushes herself to enjoy her life the best that she can. Those are the types of stories I love to read about.

Whether or not my story is going to continue this upward rise, I cannot say. But I know that I will continue to put in the work and do whatever it takes to stay the course. And I won’t be afraid to tell people how great it feels to be doing OK, because even though I can now walk well across the room and get out of bed for the day, this part of the journey is just as authentic.

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Stuck in a Rut

What’s a Rut?

There is a status quo of “suck” involved with living life with a chronic illness. Day in, day out, trapped in an unstable machine that your life revolves around. There’s a monotony to it: wake up, medicate, meditate, take care of doctors’ appointments, provide nourishment if the body will allow it, rest when necessary, and try to squeeze any bit of goodness out of the day whenever possible. But unfortunately, with most chronic illnesses comes flare ups – a period of time when symptoms escalate, usually causing maximum discomfort. I also call it being “stuck in a rut”. It can be utterly unpredictable: How long will it last? How bad will it get? Will it get worse before it gets better? Did I do something to inflict this misery on myself? Can I dig myself out?

Usually these questions go unanswered. I never get to the bottom of what causes a flare up. I can do everything right and still find myself stuck in a rut: eat all the right foods at all the right times, take my meds, get moderate but efficient exercise, go outside and soak up Vitamin D – you name it, I’ve done it right. But I still find myself curled into a ball on the bathroom floor wondering what I’ve done to deserve this punishment. And usually – it does get worse before it gets better. And only time will get me out. No amount of rescue meds, meditation, clean diet, or therapies can fix what’s broken.

What’s it Like?

So, what happens when I’m stuck in a rut? Life falls through the cracks. The laundry piles up, my room gets messier and messier, I make convenient over smart food choices, and I start to feel this corner of guilt get bigger. I don’t shower or wash my hair. I spend days in bed wondering when I will see a human being again. When will I feel the sunshine on my skin once more? When will the pain subside? I count the days I’ve been in a flare, until eventually the days bleed together and I lose track. I forget what day of the week it is, what date it is, and sometimes I even miss my appointments if things are really bad. On top of feeling like I’ve been literally rolled over by a steamroller, I begin to feel depressed. I get angry at my illness and sometimes angry at the universe, at God. I get angry at the people around me for getting to carry on with normal lives. I get angry at myself for getting angry. I slip further into depression. My rut gets deeper. I try to sleep as much as possible to feel as little as possible.

Getting Through It

Coming out of a rut isn’t just springing up one day, suddenly saying “Holy Moses, I feel better!” At least not for me. It’s a gradual improvement. The pain slowly eases up each morning. Today I can do a little more than I did yesterday. Tomorrow I’ll be able to do a little more than I did today, and so on. This might not be the case for everyone, but for me, the more I’m able to do, the happier I feel. The depression melts away. For now.

The Depression

If you’ve seen my Instagram, you know I’m constantly posting quotes about how our worth is not tied to our productivity. Well, if you only knew how much convincing I’m trying to do on myself. Our world measures our individual value by what we accomplish. It doesn’t help that my (ex)husband told me that I was basically useless on his way out of our marriage. Talk about a self-esteem crusher. That added to the fact that I’m sick and staring at the pile of clothes that I just want to put through a laundry cycle if only I were able. It makes me feel worthless sometimes. Going deeper into darkness when I’m already there is only perpetuating my pain. So, how do I love myself? Well, that’s something I’m learning one day at a time.

The Flip Side

One thing is true: I definitely have more love for myself when I feel well. Again, there’s always a level of suck to having a chronic illness, but there are some good times to be had too. Right now, because I’m stuck in a rut, this is what I know. This is what I can talk about. Hopefully soon, I will be able to get on here and talk about all the wonderful parts of having good days and what those mean to me; the joys of being upright, the reward of being out in society, the awkwardness, even, of living a “normal” life. But for now, this rut is my home.

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Trying Turmeric Cocoa and a Rambutan

This is a turmeric-ginger hot cocoa… What new things have you tried lately?

I’m just going to come out and say it: this week has tried to kick me while I’m down. But I would not fall. I found out some ugly truths, I went ahead and finished my to-do list anyway. I took care of myself and made dinner for my family. I turned inward and loved the things that deserve my attention and intention.

I also kept myself busy. I felt like crap and I rested when I needed to, but those moments that I was able? I pushed myself to do a little more for me… I made myself cleansing juices, I read chapters of my books, I wrote chapters for my book, I put on my makeup, I took a bath, I connected with friends.

One of the things I did was I went to Market Street and decided to pick up a random fruit on a whim. That would be the Rambutan that you see attached to the side of my cup. I peeled it with careful directions read from the internet by my stepdad who refused to even look at the eyeball-resembling fruit. No, it didn’t taste good. But the shell was cute, and I was proud of myself for trying something new.

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Prisoner to the Pain

The pain gets harder and harder to ignore. Sometimes I think that if I keep moving it won’t hit me. But this pain is slowing me down, stopping me in my tracks. I’m closing my eyes and begging for it leave me. I just want to read this book. Nope, can’t do that. I try something lazy like watching TV. Nope, can’t do that either. I sit in bed and stare at the walls around me. Trapped in my room by the pain that won’t leave me. I start to cry and I feel so alone. My head throbs and clicks with my tears. I know better than to get emotional because crying only makes the head pain worse, but sometimes I just can’t help it. I wipe away my tears, close my eyes and take a deep breath. I just have to hold on. This too shall pass.

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Starting from Scratch

How disappointing it was to see that my old blog was gone. Vanished. This site can’t be reached. I guess I can add it to the list of things I lost in the divorce – pending divorce, I should say. It’s OK. I had lost my interest in the old one anyway. It had him all over it. He set it up. He did all the legwork. This one is all me. From scratch.

So I had nerve block injections on Friday. For those of you who aren’t familiar, a nerve block injection is a shot containing anesthetics mixed with steroids inserted to target a specific nerve area to block pain. I get them in several areas: trochlear, zygomatic, and occipital. Trochlear goes into the eye socket, zygomatic is essentially the temples, and occipital is the back of the head. I get them bilaterally (so on both sides) and I get 2 per side in the occipital region. So that’s a total of 8 shots in my head.

I also get trigger point injections in my right shoulder blade, and it’s typically around 6-8 shots. A trigger point injection is similar to a nerve block except it’s inserted directly into a knot in the muscle to loosen it. I get a lot of knots and tight spots in my neck and scapula (shoulder blade), and these injections do wonders to break up that tension.

After the injections, I don’t always feel great. The head pain is gone, but I typically get woozy, often very nauseous, and sometimes I even spend the rest of the day in bed with a barf bag. But Friday went well. No nausea, just sweet, sweet pain relief. Unfortunately, it was just the calm before the storm. Literally.

Friday night I was huddled in the pantry with my mom, stepdad, brother and our two dogs while tornado sirens went off. There were funnels reported nearby. Luckily we were safe, but the storm brought in a cool front and by Saturday morning we had snow and I had a raging high-pressure headache.

High pressure headaches are categorized by the sensation of feeling your heart beating in your head, seeing your heartbeat in your vision, a whooshing and clicking sound in the ears, and a strong wave of nausea to go with it. You basically feel like your head is going to explode. The nausea was so bad, I couldn’t eat hardly anything all day, but I did manage to throw down some Saltines. I took a migraine cocktail which is Benadryl and Phenergen, and at first I thought I wasn’t going to be able to sleep due to the pain. I also took a Diamox (diuretic used to treat intracranial hypertension), and waited as I thought I was going to have a bad case of PAINSOMNIA. Luckily, within an hour, I was asleep. I slept for a total of 18 hours, only waking up once to eat more crackers, use the bathroom and take another round of meds.

I’m not always lucky enough to sleep through the worst of it, but this time I was. So today, I decided to stay in bed, rest up, and restart my little blog and hopefully do a better job keeping it up. Thanks for all the love and support as always.