Monday, October 13, 2014

Friday Night at the ER

It started with a whooshing sound in my right ear. It sounded like my heartbeat or like what you would hear during a sonogram. I heard it constantly, even when I was trying to sleep (which is why I hardly slept for weeks). When I sat next to other grad students at lectures, I was convinced that they could hear it, though they gave no signs that they did.

I went to the general practitioner that I normally go to. "It's just ear wax," he said. He cleaned out my ears, which was very painful. "The sound will go away in a few hours." It didn't.

He referred me to an ear doctor, who said that my eustachian tubes were stuffed up due to a minor cold I'd had. She made incisions in my ears to clear up the tubes (a procedure that was also very painful), and then my ears were in pain for several days afterwards. She said the sound would go away in a few weeks. It didn't.

Then my vision became impaired. It became a strain to watch TV, even if I was just sitting across the room. It was difficult sometimes to see everything outside without squinting. I thought it was the sunlight and that I needed to wear sunglasses. But one night I was walking around outside and I realized that the lights were blurry even then.

I also had headaches every day. I realized that it was time to see another doctor. This time I went to an optometrist at Lenscrafters for an eye exam. "This is what your eyes looked like last year," she said, showing me the pictures. "This is what your eyes look like now. You need to see a specialist right away."

That same day I went to a specialist who wasn't covered by my insurance. He charged me two hundred dollars for a ten minute consultation. He said that I needed to go to the emergency room right away, because there was something seriously wrong with my eyes. That was when I got scared.

That day I spent more than ten hours in the emergency room. I went there at 2:30 in the afternoon and didn't come out until almost one in the morning. I didn't get to eat lunch OR dinner. A kind nurse felt sorry for me and offered me some graham crackers and juice, but the doctors wouldn't let me have any; they said I had to keep my stomach empty in case I had to undergo more procedures and take more medication.

There was a lot of waiting (and freaking out, on my part) at the ER. I was freaking out because at first I couldn't get a straight answer from the many doctors that I talked to on what was wrong with me. They did another eye exam. Then they did an MRI, because at first they thought I had a brain tumor. For the MRI, they put my body in a noisy machine, where I wasn't allowed to move for an hour. I lay there the whole time, terrified.

It turns out I don't have a brain tumor, but I do have a neurological disorder. I'd rather not say what it is, but I will say that it is the cause of the whooshing sound in my ear, the impaired vision, and the headaches. It's also not a psychological problem; it's physical. The doctors did a spinal tap, meaning they put a large needle in my spine and drained fluid out of me; it was very painful (I now think of September 2014 as the Month of Painful Medical Procedures).

They prescribed me some medication, which comes with several side effects. One side effect is that my feet feel like they're falling asleep all the time. Another side effect is that soda is tasteless to me now (which SUCKS, because I love Coke). Another side effect is that it makes me tired all the time, which means I can't get a lot of work done (did I mention I have to make a huge presentation to my department next month, and my job applications are due soon)?

I left a message for one friend that I had to go to the hospital. This "friend" never responded. I left another message for another friend, who didn't respond until several days later because she was "busy" with her other friends. I managed to text a third friend, who disappeared for a long time in the middle of our conversation and then immediately changed the subject of my health to something else. With friends like these, who needs enemies? I won't be calling them again. Ever.

I even Tweeted about what was happening to me. No one Tweeted a response. Celebrities can Tweet one word, like "Uh" or "What" and get a hundred responses from fans. I Tweeted about being in the ER and being sick, and no one asked if I was okay.

My father said that I brought my neurological disorder on myself and that I am to blame  because I am so neurotic (which contradicts everything the doctors said. They said that my disorder is very rare and happens to otherwise young, healthy women.). He said I must have worked myself up into a frenzy and that's why there's something wrong with my brain now. He argued with the ER doctors over the phone and forbade me from getting a spinal tap because of the risks involved. I told him that I am a thirty-three year old adult and that my decisions are MINE, not his.

My mother was very upset with me too, and she called several times to let me know how angry she was at me. The only people who showed me any compassion were two of my professors, who I had to tell because I wasn't able to meet all of their deadlines due to the fact that I was seeing more than a dozen doctors and was in and out of the hospital for more than a month.

Right now I'm feeling sad, scared, alone, and lost. The doctors are optimistic that the medication will work. BUT if it doesn't, I may need brain surgery. If THAT doesn't work, I may go permanently blind. If I wasn't neurotic BEFORE...

What about you? Have you ever dealt with something like this? How did you deal with it?

23 comments:

  1. I'm really bad at this whole commenting thing; I am a lurker. But I had to delurk for this one, even if it's just to let you know that there's someone out here who's concerned, even if I am just a creepy stranger from the internet.

    Your situation sucks, hard, and it's just so much worse because of your (I hope former) "friends". I was in the hospital via the ER a few months back, and got a few "likes" on my fb status, but only one person bothered to text/call. It sucks so bad!

    I don't know what I'm getting at. Maybe to just say that I commiserate? And I'm thinking of you. (in a non-creepy internetty way)

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    1. Hi Susie Q,
      You're not a creepy stranger! And I appreciate your kind words. Yes, they are now my former friends, even though one of them claimed to "be there" for me; that friend's actions proved otherwise. I'm definitely not confiding in any of them ever again.
      I'm sorry you were in the ER; I hope that you're okay now. I hope that I will be okay too; I have to go back to the doctor next week for a follow-up, and hopefully she'll give me the all-clear signal and let me know that I'm okay.

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  2. This was really heartbreaking to read. I'm so sorry about the pain and fear you've been undergoing. I'm even sorrier about your friends' and family's reactions than about the disorder itself. People can bear any number of things if they feel supported; it's sad to hear that not even your family has been 100% behind you. I hope your medication works and prevents the need for brain surgery or anything invasive like that.

    I read your blog every time you post and enjoy it very much. I know you're a Catholic from what you've written in the past; since I am too, I'll keep you in my prayers :)

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    1. Hi SolariC,
      Thank you, I really appreciate that; prayer is an important part of my life.
      It was hard to know that the people who are supposed to support me did not; it just made me feel more alone. I'm especially scared of going blind; though the doctors are optimistic that I won't, just the fact that there's a chance that it could happen is enough to scare me. But hopefully the medication will work. I've been taking it and I think (I hope) I've gotten at least a little better.

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  3. Your friends really suck! If I lived in America I would have helped you. I'm so sorry that you have to go through this alone. I'm sorry. I didn't see your tweet, but if you need anyone to talk to or just get your frustrations out, you can email me mureesdup@gmail.com. I am always willing to help.

    You didn't bring this on yourself. Sometimes bad things happen to good people. I am sorry about your medical condition and I hope and wish the medication will work.

    I can just imagine how scared you are, but please take good care of yourself and get some rest. Wishing you the best and sending you plenty of virtual hugs.

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    1. Hi Murees,
      Thank you; I really appreciate your support. You're right that this wasn't my fault; I'll take the doctors' word over my father's any day. I'm still really angry at him for blaming me, and he hasn't even apologized for that (because he still thinks he's right).
      My "friends" proved that they are not people that I can count on; this was just a painful way for me to learn that.
      I've definitely been getting a lot of rest; this medication really does make me sleepy so I've been taking naps every day.

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  4. So so sorry you had to go through this alone. You deserve better. Your people FAIL.

    This is not your fault.

    Wish you strength in getting through this.

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    1. Hi eemusings,
      Thank you for that; your compassion really helps me, and I mean that. Those people definitely failed; I really needed someone to talk to and to tell me that I was going to be okay or that they would be there for me even if I wasn't. They didn't do that.

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  5. I'm kinda delurking too! More or less a former blogger who still occasionally blogs, but it even worse at commenting. So sorry to hear about all of this though! Very scary. I had my own medical issue a few years ago (involving biopsies & cancerous cells etc) & went through it alone. Hopefully everything turns out ok for you! We'll all be here for support. And I'll try to locate you on Twitter :) I would've replied at an ER tweet for sure!

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    1. Hi Life Love & High Heels,
      If I find you on Twitter I'll follow you too! And I'm not so good at commenting either, especially not lately; this medication really does make me feel sleepy and I keep dozing off. And thank you for your support; I really appreciate it. I'm sorry about your health problems; that's really scary, and I hope that you're 100% better now.

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  6. How incredibly scary. I had a scare once where I thought I might be losing my hearing (the funky sounds in the ears constantly). Turns out it was a two-week adjustment period as my body changed hormonally. Still, I'll never forget how I felt. I'm wishing you peace and sending prayers. I hope in the coming months your doctors are inspired and guided in your treatment, and that you are able to find the support and strength to get through this tough time. Hang in there!

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    1. Hi Crystal,
      Losing your hearing would be scary. I never really thought much about any of my five senses until I was faced with the prospect of losing one of them; it made me fully realize how important they are. I'm glad that you turned out to be okay.
      The doctors I'm seeing now seem to be pretty good; I hope they can help me get better. I appreciate your support; thank you so much!

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  7. I'm so sorry you're going through this. My fingers are crossed for you that it will turn out to be something that can be controlled and managed with minimal side effects! *hugs*

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    1. Hi Johanna,
      Thank you; your support is important to me, and I appreciate it. My fingers are crossed too; the side effects from the medication I'm taking now are bothersome, but if it means that I'll still be able to see for the rest of my life and not have to have brain surgery, I'll take them.

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  8. Wow...how incredibly scary!! I'm sorry that people have not been very supportive--I just don't understand! If one of my friends had called about something like that, I would have at least responded even if I couldn't physically get to them (I am limited transportation-wise). I hope that things get better for you. Hang in there. *hugs*

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    1. Hi Catherine,
      Thank you for your support! And I know you would have kept in touch with them; doing things like that makes people feel like they're not alone. That was one of the most upsetting things about this whole experience; I felt like I was alone.

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  9. I'm glad to hear they figured out what it was and can help you treat it. Sending lots of {{hugs}}.
    I do hope your parents are reacting that way out of fear for your health...It's hard enough dealing with medical issues (we have a major one going on in my family) without having to put up with the odd things people say when confronted by such serious matters...

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    1. Hi Deniz,
      I hope that their treatments work; I'm not completely out of the woods yet, but I'm hopeful, though I'm still scared too.
      I wish I could say that my parents were just reacting out of fear. But they weren't.

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  10. I'm so sorry I didn't see your tweet. I check a bunch some days and then will go a couple without Twitter. I'd have responded.

    I'm sorry you feel scared and alone. Illnesses will do that. I'm really sad that everyone in your life has their heads up their asses. You deserve better.

    And should you ever feel the inexplicable need to move to Phoenix, I'd totally come over when this kind of stuff happens.

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  11. I just read Tim excerpts of your post. He recommends excising quite a few of the people mentioned (family/friends) because he's cold like that. Though not necessarily wrong.

    I say that if you'd like to scrounge up the bucks for airfare, I'm pretty sure he'll take one or two out for you. Just sayin'...

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    1. Hi Abigail,
      Thank you for your support. I wish I could go to Phoenix, especially now that it's getting colder in Chicago (it's almost always cold here). I've already decided to stop spending time with those so-called friends; they made me feel bad about myself and I already feel bad enough as it is. I'm just scared right now because I don't know what's going to happen to me.

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  12. What is wrong with your parents? Seriously. Maybe you can send them some links to read up on the disorder.

    I really hope the medication works.

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    1. Hi Theresa,
      Unfortunately, that's not the first time my parents have said things like that. I really hope the medication works too; I'm scared of having surgery and don't want to have it at all.

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