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July 17, 2013 / Ang

Supergirl No More

I’ve never been the healthiest person in the world, but when I was younger it never managed to get me down. It finally hit how much the recent medical drama has been affecting me after telling a friend who was used to me having far too much energy at all times, after getting close to no sleep, about how I seriously slept for roughly 30 of the previous 48 hours and seeing his reaction.

As a kid I had the typical childhood ailments: chronic ear infections, tonsilitis, etc. I had tube surgeries done, had my tonsils and adnoids removed simultaneously, and moved on with my life. I had asthma as an infant but outgrew it. Life was fine and dandy – until roughly puberty. I magically redeveloped asthma – again, no biggie, it’s not that uncommon. It just threw a wrench in my plans.

Here’s where I started making doctors’ lives difficult: I had a massive ovarian cyst when I was 13. There was torsion, it became necrotic – they told my mom to make arrangements for me. Did I let it get me down? No way. I was out at the town festival the day after I got out of the hospital. I wasn’t really supposed to lift more than 10 lbs, but I did without realizing it. Oops. School started about two weeks after my surgery and I went in like a champ – the only special arrangements I had made were that I kept a textbook at home and a textbook at school to avoid breaking my weight restriction on lifting. I was fricking Supergirl – just like the brand new PJs I got since I couldn’t wear jeans because they bothered my incision.

A few years later I started getting headaches. Everyday, nonstop. I confused doctors then too. They couldn’t decide whether I should be diagnosed with migraines or new daily severe headaches because I didn’t react to imitrex the way they expected a migraine sufferer to. Eh, so I’m complicated. I confess: I let this one affect my school attendance. School was enough of a headache WITHOUT a headache, going in with a migraine? Practically unbearable.

At some point around the same time I started having trouble with feeling faint and nearly blacking out at school. I talked to my doctor about it and he was all about “You know, it’s not uncommon for girls your age to have problems with keeping their sugar up. You need to keep food with you at school, stay hydrated, and make sure you’re eating protein in the mornings to help stabilize.” And so it went. I got away with water bottles in class in a school that frowned upon such things and I kept candy in my locker so that if I started feeling weird I could just grab something for a quick pick me up.

I went on medicine for acid reflux in high school too, but it just wasn’t helping. My doctor didn’t seem to understand and thought that maybe I was exaggerating it seemed. Eventually after weight loss and absolute misery he eventually decided to go ahead and send me to a GI. The GI did an endoscopy and changed the reflux medicine but I was still sick. Eventually he looked at me and went, “Wait, I treated your sister, didn’t I?” Yes, yes he did. And he sent her to UPMC because he couldn’t handle her. Luckily, this realization led to a brilliant decision – I needed a colonoscopy. I got the call the night of my senior prom after missing enough school between migraines, stomach drama, and trips to and from doctors’ offices for appointments and the hospitals for testing to be deemed “senioritis” saying that I wasn’t crazy, I was sick, and I needed to start taking asacol – that night. Lo and behold after like three years of stomach problems I was finally diagnosed with “nonspecific colitis.” Throughout college I would get flares and get more scopes that ranged from “Well your intestines look fine” (duh, I was going into spontaneous remission by that point) to “We think it might be microscopic colitis.” But hey, whatever – I survived. I missed class on a lot of days, because who wouldn’t when they couldn’t function because of pain? I doubled over even on Vicoden on days when my lone ovary decided it wanted to have cysts and be cruel. But I survived. I’m just awesome like that.

Fall semester we got worried that I was developing arthritis or something because I was having severe wrist pain, tingling hands, and I had a positive ANA test. It freaked me out. Let me clarify: I’m a deaf education major and I was taking three hours of sign at least twice weekly at the time. I can’t exactly follow my career path if I’m not allowed to use my hands the way I’d grown used to. A rheumatologist cleared that problem up: “No, pretty sure you just have severe tendonitis. Were you having colitis symptoms when you had the positive ANA? That could explain it.” And so it was determined that I had tendonitis and a touch of fibro, I started a muscle relaxer at night to help with the pain, and I thought life was coming together because I wasn’t achy all over and in misery over my wrists anymore.

Introducing: Murphy’s Law. If you hadn’t noticed, it’s a huge part of my life. I also like to call this part “Everything falling apart when I thought it was all coming together.”

I started student teaching and I was convinced it was going to go great. I would rock my placement, graduate on time, get a teaching job and get out of this town. I would even (maybe, hopefully) move to a city – preferably Pittsburgh or New York, cities after my heart.

The second day of my student teaching placement in Pittsburgh I went to the Absolute Ballroom Studio to go west coast swing dancing because I missed my WCS family. I killed time in a coffeeshop after school waiting for it to be time for the dance lesson, ran into one of my favorite dance partners (who yelled at me for not being at dance before realizing that’s the only reason I was still in the city at that hour), and then went to dance. I was loving being back on the floor, it was great – the shortness of breath and rapid heartbeat were not. So I sat down thinking I just needed to take a break because I was out of shape. I was really frustrated with myself thinking that my bad relationship with food had finally come back on me – and that was not okay. I was not okay with shaking and having my heart race for multiple hours, and not being able to dance the way I wanted to – and thinking it was my fault. I went to school the next day pretending nothing was wrong, got back to college, and still had palpitations.

Here’s the thing: When you’re used to being sick you try to blow off symptoms as long as possible. I was seriously just going to start going to the gym whenever possible so that I could build up my stamina and get in better shape and hopefully not have further heart issues. I did pretty well with this until I stopped in someone’s office on campus because he thinks of me as a daughter: I got sent to the emergency room where they went, “Well, we really don’t know what to tell you. You’re having tachycardia – that much is clear. But we think it could be benign. You’re fine to go to school tomorrow. But, uh, no strenuous activity until further notice.” I went to school because I’m stubborn like that. I was determined I could survive this BUT – I got sent home from school and sent to my doctor who was concerned.

Those 48 hours or so were just the start of a long few months for me. I tried to survive student teaching with tachycardia and palpitations and crazy headaches daily, then had my supervisor pull the plug saying I wasn’t up to my next placement and she didn’t want to throw me to the wolves. I had an echocardiogram done, I wore a holter monitor, I had at least 3 EKGs done over the timespan of that first week – I swear. I had a stress test done, I had a tilt table done. I paid more than one more visit to the ER. I had chest pain, I was too dizzy to function, I didn’t know what to do – and the doctor said to go to the ER. So I attempted to be a good patient and dutifully headed over only for them to tell me they weren’t sure what to do for me. I tried calcium channel blockers, there was no effect. So I went off of them again. I started a potassium supplement, I gave up caffeine (and I LOVE caffeine – pepsi, coffee, chai tea, chocolate – it was so sad), I started drinking absurd amounts of water and juice. I was doing everything we could think of to prevent further continuous episodes of tachycardia.

It turns out the tilt table was the magic trick to finally finding out what was wrong. I was on the table for less than ten minutes before I went, “I don’t know if this is one of the things I’m supposed to report, but I’m seeing spots.” The nurse went and got the electrophysiologist and he told her not to administer the nitro. I kept trying to talk to the nurse and watch tv to distract myself from how crappy I was feeling, and I remember asking her at one point, “How much longer do I have left?” She told me it was ten minutes or so and asked if I was okay. Being supergirl my response was, “Yep. Just fine. I’ll make it. I’ve been managing for months now, I can survive this test.” And promptly passed out and had a seizure. The next thing I knew I was waking up to a different nurse putting my table down while the maternal nurse was grasping my bag of fluids with both hands trying to get the IV fluids into me as quickly as possible. Apparently it was unusual for the staff to see a patient as young as myself because they kept looking at me going, “How old are you, honey?” Every. Time. I. Had. A. Test. That day was no exception. Apparently I had them all pretty freaked out because they made me sit and eat at least one pack of crackers, drink a bottle of juice, and finish out my IV. And when I was finally allowed to get dressed and head out to my car I’m pretty sure I was wheeled out, or at least held onto, and everyone at the nurses’ station shouted, “Feel better honey!” I confess that I don’t remember for sure if I was wheeled out or not anymore – everything was a little foggy.

I hoped that after having such a violent reaction to the tilt test that I would be seen by my cardiologist right away and start treatment as soon as possible. Instead I had to continue in the brain fog, feeling like I wasn’t getting anything accomplished even though I was putting everything I had into it. I was always falling asleep on the ride home from school or while writing my lesson plans, etc. And I had what I later found out were “near syncope episodes” while waiting in line at the food court for dinner after getting home from Pittsburgh on multiple occasions, even though I was using the elevator because I was freaked out by how much the stairs were exhausting me, trying to stay hydrated, etc. When I finally saw my cardiologist weeks later I found out that the exhaustion, the confusion, even my digestive issues, could all possibly be linked back to the new magical phrase: POTS.

My POTS comes with a side of vasovagal syncope. The two have hit pretty hard and are causing me to make a lot of changes. I drink a minimum of four bottles of water a day and I’m still a little dehydrated based on the chapped lips and peeling feet. I keep salty snacks in my car so that I always have something on hand. As much as I HATE them – I even keep salt tablets in the bag that I take with me if I’m doing anything that keeps me out of the house and busy for a while. I caved and took one yesterday because I was feeling so spacy. I have trouble with what I consider to be the most basic of tasks sometimes – shopping, cooking, cleaning. It’s frustrating to say the least, especially because I never used to stop. It was go go go. I even held a Relay Rally for my university’s Relay For Life the same day as a scope before. And now I sleep – a lot. Which is unusual for someone who took ambien for a few years her insomnia was so bad.

It turns out I’m a relatively complicated case, apparently. We’re avoiding beta blockers because of my asthma. Calcium channel blockers didn’t have an effect when I tried them in February. Salt tablets? Migraines. Dietitian visits? Ha – like my insurance would be so kind (or she could handle all of my restrictions between allergies and my colitis/reflux diet and now this). Florinef? Forget about it – I thought I was having trouble because it seemed like my migraines were coming back BEFORE starting treatment. Once I started the florinef I was practically bedridden the headaches were so bad. So now I’m on yet another medicine: hyoscyamine. It’s basically my diagnosing cardiologist’s last try, he told me he’s not sure what to do for me since the treatments seem to be triggers. This one has been coming with some headaches too – but my neurologist upped my topamax (yay tingling/numb hands and feet) to try to counteract the effects and told me to keep up with the new medicine/new dosage for at least a month and then call to conference about it if I was still having trouble. I’m heading out to the Cleveland Clinic in October to see Dr. Fredrick Jaeger about my POTS and syncope, and he’s probably going to have me undergo the full disautonomy test regimen from what I’ve been reading of his webchat transcripts. And then I guess we’ll see what he decides to do from there. So for now I’m just collecting medical records to mail them out to him so they’re on hand for the team of doctors I’m likely to be seeing once it’s finally October 18th and I get my consult in.

Here’s the part where I admit to being a bad patient: I’ve been trying to start the continuously going thing again. I want to be or feel normal again so desperately that I dance regardless of the fact that it could be considered strenuous – I make adjustments. I dance to mostly slower songs, aside from some of the leads that I have trouble saying no to because I adore them. Then I break my own rules – and learn to regret it. Even following the rules my heart rate is within the tachycardia range sometimes – it’s worse when I misbehave. I’ve been trying to run again too. It just gets too hard not to be active. Especially when that particular lifestyle change came with the pricetag of weight gain – even though I feel like I’m making healthier choices. It’s hard to sit around feeling exhausted and not keeping up to what I’m used to as my pace. I try to behave, sortof. The other night when I went out to time my mile I made sure that I did intervals instead of running the whole thing – every other tenth of a mile I walked to try not to overdo it.

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