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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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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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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.