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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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How to Practice Standing

I was talking to a friend the other day – and by talking, I mean messaging through social media, and by friend I mean a stranger that I’ve come to know online – and she told me that she was going to physical therapy to regain the use of her legs. POTS has made standing and walking a challenge for her. She uses a walker to get around and needs the therapy to strengthen her legs which have become weak over time.  When someone has an orthostatic intolerance, like we do, they feel better laying down. Not only that, but our bodies actually function how they are supposed to when in the supine position. When we “POTSIES” stand up, our autonomic nervous system isn’t working properly: our blood doesn’t flow to the right place at the right time, usually meaning we faint, or feel like we are going to faint – also called syncope and pre-syncope. So this friend has pre-syncope every time she goes to stand up, just like me. I told her: standing is hard. I have to practice. Then came the question: How do you practice standing?

Learning to stand was Lesson Two at The POTS Treatment Center, right after breathing with your diaphragm. Now in order to execute Lesson Two, you must first know how to execute Lesson One. Breathing with your diaphragm sounds easy enough, but in order to truly Belly Breathe, you have to focus. And practice. How are you breathing right now? Hopefully you’ve experienced some yoga or meditation at some point in your life journey because the principles are similar, except here, we are breathing in and out through our nose, and we are breathing with one purpose: to relax. With POTS, our heart rate is out of whack. Think of it this way, we have the body of a sloth, with the heart rate of a hummingbird. So the purpose of the breath is to calm and regulate our heart rate. Inhale. Hold. Exhale. Inhale. Hold. Exhale. Inhale for four counts, hold for two, and exhale for six. Inhale. Hold. Exhale. Place one hand over your belly and one hand over your heart. Inhale. Hold. Exhale. Your belly should be expanding, your chest should not move. Inhale. Hold. Exhale. A relaxed person should take six breaths a minute. Only six. Inhale. Hold. Exhale. Inhale. Hold. Exhale. How are your breathing right now?

So now that you are aware of your breath, how does that help us stand up? Well for starters, you can’t just jump out of your chair and move. That’s wrong. With POTS, you know that’s wrong because the minute you are on your feet, you’re transported into outer space and suddenly there is no floor. When you feel gravity’s pull back to this plane, you realize that you stood up too fast. Again. So sit back down, and let’s try again. Scoot to the edge of your seat and take three deep breaths like we practiced above. Inhale. Hold. Exhale. On your final exhale, use the strength of your arms to push you up from the chair and continue to exhale as you push yourself into standing position. Now stop! Don’t take off walking just yet. Its time to breathe a little bit more before you start rushing forward. Your body is adjusting to being upright. Give it a chance to catch up. Take three more long, full, deep breaths. Inhale. Hold. Exhale. On your third and final exhale, you can take that first step.

If you have POTS, you’ve probably been told by your doctor to not stand up so fast. It made you roll your eyes, right? I know it made me roll mine the first time I was told “Well don’t stand up so fast” after saying I felt like I was going to pass out every time I got up. But the truth is, if the doctors took the minute to explain this method, or maybe used the phrase “give yourself more time to stand up”, maybe we wouldn’t roll our eyes. Maybe we would listen and actually practice standing. If you’re reading this and you don’t have POTS, I hope you got a glimpse of the small, subtle things that we must take our time for when living with this syndrome. Something as simple as standing up is often taken for granted. “Healthy is a crown that only the sick can see.” Be aware of how fortunate you are. And be gentle out in the world with others. You never know what silent wars are waging within them. You never know if that person taking a little longer on the plane has two more breaths to count through before they can stand up. Be patient. Be kind. And be thankful that you don’t have to practice standing.

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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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My POTS Diagnosis

I had something big happen on Tuesday and I want to talk about it. I was giving myself some space to process it all when I found out about my husband’s affair/new relationship, so needless to say, I got sidetracked. I put my own stuff on the backburner to once again mourn something that I should be done mourning. But let me back up and talk about the big news. Because I want to be done talking about him. I really do. This is about me. This diagnosis feels like the missing puzzle piece to all my questions. The missing link in the chain. The reason my body has betrayed me. The reason I’ve spent the last year bedridden.

It can all be explained by POTS/Dysautonomia. The fatigue. The lightheadedness. The tachycardia which feels like anxiety. Actual anxiety, which comes with rushes of adrenaline. The insomnia. The tremors. God, I’ve been looking for an answer about the tremors and no one could tell me why. Why would my hands start to shake uncontrollably and then subsequently my whole body? Now, I know. I haven’t been crazy.

So what does it feel like? Validation. Confirmation. Relief. When you’ve been living with unidentified symptoms as long as I have, you don’t see a diagnosis with fear. You finally get some peace with knowing. That’s how it felt when I got the diagnosis for IIH. Even though I looked it up and the articles all said “chronic”, a word that my doctor conveniently failed to mention, I wasn’t really overwhelmed by sadness or loss. I felt like a key had slipped into a locked door and I could finally walk through.

That’s not to say it’s all sunshine and rainbows on the other side of that door. There are challenges. Real problems that come with a new diagnosis. So now I have an orthostatic intolerance (a fancy way of saying my body doesn’t like it when I stand up).

So now what? What do I do with that information? I’m still navigating those waters. I’ve only had two appointments and we’ve focused on heart rate regulation and hydration. Next week I’ll work with a nutritionist. Although I’ve heard limited success stories, this is something that people can heal from. Right now, I’m overwhelmed by the week and feel too tired to try, but I know that’s just my fatigue talking. Tomorrow is a new day. And if tomorrow is no good, so is the next day… Now that I’ve found my missing puzzle piece, it’s time to do the work.

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When the worst is true

I got what I didn’t want. Confirmation that my husband left me for another woman. Not just any woman. A friend. Our friend. Someone I used to work out with. Someone who went on my Bachelorette weekend trip with me before we got married. This is why I stay off Facebook…

But I wanted some pictures. Facebook has been my unofficial dropbox of photos since 2008, which also means it’s been a compilation of memories of me and him. So I deactivated when we first separated and I saw that the two of them were getting tagged on outings together. I had my suspicions. They looked too close in photos. But no real proof. I still held onto the fact that he wouldn’t do that to me. And that maybe she was a good person. Neither turned out to be true.

I held out thinking maybe he left for because of my illness. And maybe he did. But he also did the classic “grass is greener” and wasn’t strong enough to look at his own lawn and see how he could tend to it. That’s what marriage is all about. Having the commitment to look inward instead of outward. Giving yourself to your partner. Being vulnerable enough to let your partner know that you are unhappy long before it’s too late. And by the way, it’s never too late. Now, I’m not talking about abusive or poisoned-beyond-repair relationships. I’m talking run-of-the-mill, dealing with everyday stress, leaving your wife because it’s the most convenient thing for you to do that day of the week – relationships.

So my heart was mending. It was sewn up and holding together somewhat. Now it just got ripped back open. And for what? A couple of photos of two people that won’t be happy together in a couple of years. Or less. The thing is, he didn’t want to be with me, but he can’t be alone. They shattered my universe. And there they are, happy ontop of some mountain. Barf. Literally… I ran to the toilet and barfed after I scrolled through the photos.

Just the other day I was thinking, maybe if he knew I’d been diagnosed with POTS he wouldn’t leave me still. Maybe we could salvage things. There was always some hope on the horizon, right. Wrong. It’s over, girl. He’s not coming back. You don’t want him back. Any person who couldn’t stay with you in sickness, isn’t worth your tears. He isn’t worth your pain.

So how do I refocus my day? How do I turn it around after getting literally lovesick, slamming things around in my room, screaming at the top of my lungs, and crying into the pillow? How do I recenter and focus on myself? Well, I came here. I sat down to write. At first it was too painful, but as I clicked away, my jaw unclenched and I began to see more clearly. As if giving advice to the world, means I must first take it myself. Because I would tell any one of my friends to pick herself up by her bootstraps – after an adequate amount of emotional release – and not waste another thought on him. And now, I’m going to pick up my Chronic Illness workbook and do some work. Work on myself, for myself.

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POTS Treatment Center

Half a morning completely lost to sleeping off yesterday’s pain. I had painsomnia until almost 1:30am but finally was able to get some sleep after some pharmaceutical assistance. I hate resorting to that. I had gotten on such a good schedule, too. I was getting up around 8-8:30 every morning and getting to bed by 10:30pm. That schedule was working for me and I didn’t feel guilty about it. Sleeping until 10am? That makes me feel guilty. But when you have a migraine or pain hangover, sometimes you have to get that extra shut-eye in. My Apple Watch has been instrumental in telling me about my sleep cycles. I apparently don’t get very much restful sleep each night, only about 55-65%. I am definitely going to mention that at the POTS Treatment Center at my appointment tomorrow.

I am anxious about this appointment tomorrow. I saw a lot of reviews saying people felt completely better after a two-week program. That sort of result sounds like a scam to me. Am I just being pessimistic? I also noticed that they diagnose Chronic Fatigue Syndrome there, at least I think they do. Wow, if I could find out for sure one way or another if I have CFS I would be so happy.

A lot of people ask me: what comes from the diagnosis? And for me, a lot of it is just piece of mind. Answers mean everything. It’s justification. It’s validation. It’s proof that you aren’t crazy. I know there are things wrong with my body that haven’t been pin-pointed yet, and to have someone say “this is happening because of XYZ”, well you just can’t put a price on that sort of corroboration.

The clinic is sort of far, and I definitely don’t plan on driving myself, so hopefully it’s worth my while getting over there. I really trust the cardiologist who is referring me. He’s an excellent physician, very thorough, knowledgeable, and compassionate.

I gathered some information from the POTS Treatment Center’s website and am including it below. I’m also including a link to their website for anyone who’s interested in working with them. They do accept people from out-of-town into their program.

Pots Treatment Center

What is POTS?

POTS stands for postural orthostatic tachychardia syndrome. It’s a combination of symptoms caused by dysfunction of the autonomic nervous system called dysautonomia. Clinical testing for POTS includes checking the patient’s heart rate when moving from lying down to standing to find an increase of at least 30 bpm in 10 minutes or less. POTS can also be classified by an excessive increase in heart rate on a tilt table, more than 100 bpm, as well as a significant change in blood pressure.

POTS Symptoms

  • orthostatic intolerance
  • tachycardia
  • bradycardia
  • light/noise sensitivity
  • thermoregulatory issues
  • headaches/migraines
  • dizziness
  • chest pain
  • exercise intolerance
  • fatigue
  • shortness of breath
  • GI issues
  • insomnia
  • blurry vision
  • sweating
  • menstrual irregularities
  • fainting
  • joint/muscle pain
  • tremors
  • brain fog
  • frequent urination
  • anxiety
  • nausea
  • cognitive impairment
From potstreatmentcenter.com

Treatment for POTS

Regulation of blood pressure and heart rate are important treatments for POTS. Diet, nutrition, and an exercise plan are also recommended for POTS patients. Compression stockings, salt tablets and IV fluids are often prescribed to relieve POTS symptoms.

Causes of POTS

POTS can come about after a viral illness, hospitalization or period of extended immobilization. It can also be triggered by trauma, pregnancy or head injury. The majority of POTS patients are women between the ages of 15 and 50. It is considered a common illness in the United States, although it is not well understood by physicians.

Resources:

POTS TREATMENT CENTER

The Cleveland Clinic – About POTS

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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.