We’re Off To See The Wizard
Ehhhhhhhhhhhhhh.
That is what I have to say about my current class of living. After everything I have been through over the past 11 years, I am officially back to square numero uno.
It’s been about two years or so since my body began the gradual process of becoming progressively more resistant to the only blessed medication that my NCS found formidable enough to yield to. Within a week or two of having my baby the NCS decided to quit responding to the meds altogether, resulting in my now bedridden state. I have literally become a useless mound of flesh that (and yes, I am using the word ‘that’ and not the word ‘who’, because I barely feel like a person at the moment) can sometimes help fold laundry if it’s brought to my bedside. That’s pretty much all I’m good for these days, which is not very helpful, especially when I have a 3 month old baby who needs taking care of. My lovely, happy, colicky bundle of joy also requires constant walking and standing and shuffling and movement, none of which I can provide for him. How can an itty bitty baby with a whole lot of ouchie tummy ailments understand that his mommy can’t stand with him? Or sway with him? Or walk him around to help him feel better? Every time he’s in pain and I can do nothing but hold him while I’m sitting down, my heart breaks with his heart-wrenching waterworks.
So what is my brilliant solution? Live with my parents and have my old lady, stroke-victim, sleep-deprived mother carry him around for large portions of the day. She has enough problems of her own attempting to take care of a scatterbrained household, let alone tot around with her getting-heavier-every-day grandson attached to her arm. In all honesty, it’s actually really adorable. He lays there in her arms, all sprawled out like a content sloth with a little smirk on his face while she tells him lovingly how big of a misery he is for fussing up such a storm while she’s trying to get her chores done. And what do I do? I watch. I sigh. I try hard not to faint.
I’m not sure why, but I’ve been getting heat flashes with increasing frequency. Even when the baby isn’t being colicky and tolerates my seated position, I sometimes can’t hold him. They call babies ‘little bundles of joy’, but what they should really call them is ‘little bundles of heat’. It’s SO easy for me to get overheated while holding him for even a few short minutes. My wonderful sister-in-law sent me over a Boppy, which has been awesome for when I need to put him down and my mom isn’t available. That way he still stays close to me, I can play with him and converse with him, and I don’t get any of that bundle-heat. But still… the dizziness plagues me terribly now, more so than ever before. I still can’t manage to get to the bathroom on my own, I need help showering even while sitting in a shower chair, and trying to go out, anywhere at all, is basically impossible. It was my anniversary the other week and my parents were treating all of us to go out for dinner. Before the waiter could get our order I had an episode and we had to leave. I kept being told “try to stick it out, maybe you’ll feel better in a few minutes,” but with the world spinning around me, and everyone’s speech growing fainter to my ears by the minute… is that really something I was going to focus on? So, as usual, I ruined everybody’s rare outing.
We came to a household vote that I just can’t continue to live this way anymore. I’m a young 26 year old who can’t finish school since I’m not currently capable of completing the required internships, have a baby that needs mothering, and can’t spend the rest of my life in bed. So I was recommended to a new cardiologist who is apparently one of the best in the country, and is the head of one of the leading cardiac hospitals in existence. He was recommended to be Surgeon General a while back (and only didn’t become so due to personal matters), and was for many years the private doctor to George W. Bush. Surely a man of that caliber could fix me, right? I managed to snag a hugely sought-after appointment solely because the person who recommended him to me was my dad’s very influential and money-laden bosses, who called this doctor themselves to get me an appointment. Apparently the guy had saved one of their lives and they swear by him. I tried to explain that my condition is hopeless and that there’s nothing to be done about it that I haven’t already tried, and the response I received was “I’ll only believe it when the doctor says that is true!” So what was a girl to do? Refuse and get my dad fired, or go and see the miracle doctor?
Mom, baby and I went to his office, where we were greeted first by a nurse, which is typical for any doctor’s office. Usually, before the doctor comes in, you see the nurse or physician’s assistant, who goes over with you the reason behind your visit and your medical background/history. So after taking my vitals and information, she says “the doctor will be with you shortly.” Okay. Sounds reasonable. Sure enough, three minutes doesn’t fully pass before the doctor walks in. The only problem being that he isn’t the doctor I was meant to see. Mistake, right? NOPE. Apparently before I can see the Great and Powerful Doctor of Cardiology, I need to see a high-caliber cardiologist first and give him a more detailed version of my reason for visitation. NEVER in my eleven years of going to several of every type of doctor on the planet have I ever needed to see a doctor before a doctor. The only explanation my brain could give me was a reminder that while in the waiting room, other patients were calling this guy The Wizard, and I had overheard the nurses on the way in calling him names paralleled to the Master of Creation. So after the cardiologist leaves, to the same tune of “the doctor will be with you shortly,” I really hope that this is the *actual* doctor I’m going to see, and not another different doctor in the line of medical practitioners that has taken over my examining room.
Several minutes pass, and THE doctor finally comes in and introduces himself. We go over the same drill about my heart condition, only mid-way through the tirade that is my medical history I end up fainting on the guy. About 30 seconds before I went unconscious, while I was still blabbering away and completely unaware that I was about to be tornadoed to Oz, I saw The Wizard frown at me. I vaguely remember him asking me in his light Indian accent, “are you alright? You’re having an episode right now, aren’t you?” Then the world spun, I got extremely lightheaded, and everything began to fade. I had only blacked out for a second, and immediately following, he had me lay down on the table while he took my pulse. Once I was conscious enough to talk, he asked me “How often do you get episodes out of nowhere like that? Once a month?” I almost laughed. I probably would have if I wasn’t so darn dizzy. “Several times a day,” was my reply. He did a few more medical-y things like listen to my heart and continue with his hold on my wrist. I think that was more out of nervousness about me taking a flop off the table, though. Then he stared at me for a minute with his eyebrows doing that pointing-downwards-with-concern thing that eyebrows are sometimes known to do, and announced, “You have the worst case of Neurocardiogenic Syncope I have ever seen.” I was actually proud of myself. It must take quite a bit to impress a doctor that has a doctor see his patients before he does. And hey, if I’m going to have something bad, I might as well be the baddest there is. Title = owned.
So The Wizard can do something for me, right? The Emerald City that held my salvation was surely in my grasp. He’s one of the best there is, after all, which means there’s some magic pill or solution to make my dizzy go away. Got to be, right? Cuz if he can’t fix me, then who the hell can? I look up at the doctor expectantly, and in return I get a “I have no idea what to do with you.” FAIL. If I had any less strong of a will I would have facepalmed myself right there in front of him.
I spent the next week feeling depressed and sorry for myself. I just wanted to be left alone to wallow in my abundance of self-pity. My mother, on the other hand, had a very different opinion of what needed to happen. “We’re finding you someone else to go to! I don’t even care about you anymore, I can’t live like this!” How sweet. I get the worst news of my life, and she refuses to let me flounder in my hard earned misery. We decide to try out an electro-cardiologist that I went to about 6 years ago. He was the only one to try me on a variety of meds to see if anything worked better than the beta blocker, and we had come out with negative results. The reason I stopped going to him was because his bedside manner left something to be desired, and he wouldn’t lay off about the need to exercise and my weight, I felt insulted and decided to go elsewhere. Last week I sucked it up and went back to him. He changed a few things around, added some other things, and gave me a prescription for this Wonder Pill that I’m supposed to place under my tongue if I’m having an episode, and apparently it reverses the NCS attack. I’m not allowed to take it more than once a day, and he only allotted me 10 pills to try it out first, but it sounds both interesting and scary all at the same time. What the hell kind of super pill could pull me out of an episode? Freaky. In any case, I haven’t been able to test it out yet. Not because I haven’t had an episode since his office visit, but because my insurance decided not to cover the pills so his office and my insurance company are duking it out to decide if I actually need it or not. The doctor says that he’ll win, and I should be able to pick up the prescription by Friday. He also wants to see me in 2 weeks so we can figure out if the medication changes are working at all. He removed my nightly beta blocker so I’m now only taking my daytime one. He is also having me take 3 salt pills in the morning and none during the day, claiming that he doesn’t want me to have to “chase” my condition. He also increased my midodrine to a steady 3 times a day, and not the “as needed” that I had been doing until now. I am also commanded to wear the compression stockings I had been neglecting, and told to do at least minor walking, even if it’s just to my mailbox and back. I told him to try to walk to his mailbox when the ground beneath his feet feels like it’s moving and he has to grip the walls as it is just to get the 15 feet to his bathroom. He wasn’t having any excuses and told me to do it anyway, and that he’s never met someone with NCS that can’t walk to their mailbox. But then again, he also hasn’t met The Wizard’s “worst case ever.”
Something has got to give, and it ain’t gonna be the NCS.
We’re off to see the Wizard
The Wonderful Wizard of Oz
We hear he is a Whiz of a Wiz
If ever a Wiz there was
If ever, oh ever, a Wiz there was
The Wizard of Oz is one because
Because, because, because, because, because
Because of the wonderful things he does
We’re off to see the wizard
The Wonderful Wizard of Oz!
Living With Neurocardiogenic Syncope (Vasovagal Syncope) / POTS (Postural Orthostatic Tachycardia Syndrome) 