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Category Archives: schwannoma

A year ago

A year ago at this time, I was on the down-slide of my “Prilosec-fever.” I was at the beginning stages of lethargy, I had already cut out all carbs and sugar–cold turkey–and I was falling deeply into depression. I ate very little and was barely leaving my bed. I was paranoid and having panic attacks. I had no idea what was happening to me, but it was both physical and psychological. I thought I was going crazy…I thought my brain was broken, along with my body.

Today, I’m driving and taking care of a lot of things due to my husband’s ankle problem (poor boy is in a walking cast now). I’m cooking for a get-together on Saturday, I’m grocery shopping without Hub (something I hadn’t done in years), and running errands on my own. I’m going to PT twice a week and seeing T every other week…driving myself to nearly all appointments. I’m doing laundry and taking care of the dogs, traveling out of state with family, and a few weekends ago I helped my parents setup for, run, and breakdown a yard sale.

And I’m still afraid. I’m afraid that this is all temporary and any day I will fall backwards into the pit I was in a year ago. I’m SO much more mindful of things today, of where I am physically and mentally, but I’m still afraid. I let these thoughts drift through my consciousness, but I don’t linger on them. I don’t want to dwell, I want to live in the moment and move forward in the state I am in now. I try very hard. I often wonder if other people have to try this hard to be “normal.” (whatever “normal”¬† means.)

I still struggle with fatigue and anxiety, don’t get me wrong. But when I look back to where I was a year ago this time, I am grateful for the progress I’ve made. Last year on Christmas eve I was in the ER, in tears, sure I was about to be committed. No one knew what was going on with me, even there. They sent me home saying I was dehydrated and needed to eat more. They sent me home thinking I had a horrible tumor growing in my brain that they would do nothing for unless it began to impact me significantly (a diagnosis that was later redacted…after I spent weeks and weeks freaking out). I still struggle with pain from my chronic illnesses, and I still get down more than I’d like.

And Hub has pointed out–and I see it myself now–that I do get short with people sometimes. I feel like I have reasons for getting exasperated with people, but Hub disagrees with me. He says I get that way without any reason he can see, but a lot of times I don’t tell him why I’m annoyed because it’s him or something he has done. But I am at the point where I pick my battles and the rest of the time I don’t want to start anything with him. It isn’t worth the energy or the aggravation, but apparently I’m still letting my annoyance show. I’m trying to work on that. I know I have this issue with my mom sometimes, too, but with the same explanation. I really really dislike (see “hate”) when she asks me three or four times in one conversation if I’m OK. Just because I’m not ebullient (fucking cheerful) all the time, she worries…and so she asks repeatedly if I’m okay. If I say YES the first time, don’t ask me again. It really aggravates me to no end. And I have told her this, but she doesn’t seem to get it. I don’t want to fight with her, but again the annoyance comes through, and i hear it, too. It is something I will continue to work through.

So I’m a work in progress. No shock there. But I am far forward from where I was last year. Thankfully.

 

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My ER experience

I went into the emergency room of a local and well-known hospital  because of the symptoms I had been dealing with for several weeks. On top of an onslaught of depression and grief, I had been suffering from extreme lethargy, lack of interest, paranoia (mostly over food), body pains, weakness, severe panic and anxiety, lack of concentration, heart palpitations, and more. I had no idea where all this was coming from, and I was unable to continue the way I was. I scheduled with my husband and parents to go to the ER on a Monday morning, so that we knew who would take care of our dog and how my in-laws (in from out of town) would be dealt with. I had packed my bags for a multi-day stay, just in case. Even though I knew I was doing the right thing by seeking help, I was scared shit-less. I was terrified the hospital would find me mentally unstable and would have me committed. I begged my husband to never let me out of his sight, to not let them take me away. I was so sure I would not be coming home that I left my husband a note telling him goodbye, telling him how much I loved him and how sorry I was that I had done this to him. There was more in the letter, very personal and private emotions that spilled out, because I knew in my heart that I was going to be taken away from my family.

We went into the ER and as expected, had to wait. Because of some of my symptoms, they did take me in briefly for an EKG to check my heart, but I guess it must have been normal because they then sent me back to the waiting room for quite some time. While I was out there, I struggled with my panic and anxiety. I struggled to sit still, but failed. I shifted in the wheelchair I’d come in on (I had no strength to walk in from the car, let alone walk through the ER), constantly moving my body around. My heart raced continuously and my fear over what was going to happen in the ER escalated minute by minute.

When they finally brought me back to a tiny room, they re-checked vitals and took a urine sample. Pretty quickly they realized I was dehydrated, so they set me up with an IV before I even saw a doctor. I don’t remember everything about the experience, but I know at some point they moved us from this one room that had a private attached bathroom, to another room that was just as small but did not have an attached bathroom. It was here I was seen by doctors, including a neurologist. They were concerned that I was neurologically impaired due to something called Guillain Barre syndrome, but the best way to test was by spinal tap. Since the neurology resident wasn’t feeling confident about the diagnosis, we requested she speak with her supervisor before we went for such a painful and (terrifying!) invasive test. Instead I went for a CT Scan of my head and neck. My husband, G-d bless him, insisted he go with me to the CT scan, even though he had to wait in the hall outside. It was a quick trip, and the neurologist came back in shortly thereafter to do her physical exam. I’ve been through these before, stand, sit, walk, scrape the foot, test the eyes, strength, balance… the majority of these results were normal for me, a few slightly abnormal, but nothing alarming. She felt my hearing was compromised in one ear from one area, but it wasn’t something I’d ever noticed.

Then the CT scan came back with an abnormality in the hearing and balance area of my brain, so they immediately scheduled me for an MRI. I’ve had an MRI before…once. I hated it. And even then I’d been concerned about the dye used because people can have anaphylatic reactions to it. But I was told this was a different kind of dye, and that if I was nervous I could have an Ativan before the MRI. I told the nurses that yes, I have anxiety, and yes, I am severely anxious about the MRI and how enclosed it is, and how I can’t keep my head still when asked to do so. But that I was too scared to even take the Ativan. They assured me the Ativan would be short-lived, and that it was unlikely that I would have a reaction. I was actually surprised at how compassionate the nurse was with me, and the resident doctor as well. And considering I was in the emergency room and could be seen right away if I had a reaction, I finally relented. They gave me a small pill and I took it. And I sat and counted the clock, waiting to feel something…good or bad. Instead I started feeling mildly sleepy…and numb. When they came to prep me an hour after the pill for the MRI, they gave me more Ativan intravenously, then took me away. They wouldn’t let my husband come this time, as they said it would be a long wait and no place for him to sit.

Although I remember going to the MRI, and how nice the techs there were, I had no real sense of time. I knew I was in there a while, no question, and I was bored out of my gourd, I was mostly just…bored. The noises were annoying, and staring up at the stupid mirror showing me my feet was … boring and aggravating and kind of confusing. It was like, what the hell were my feet doing over my head? After some time, the tech came out and gave me the dye in my IV, then rolled me back into the MRI, telling me it would only be another hour! And no, even though my ass hurt like a mother-fucker, I could not adjust on the table because I had to be in the exact same position. I think there was music playing, which they’d asked about initially (top 40 or pop, please), but I don’t remember much of it.

When I came back, my husband was waiting in the hall for me, like a caged animal. He told me I’d been gone for 3 hours. I had no idea…again I knew it had taken a while, but not that long! Ativan, interesting creature.

The neurologist came back saying I had something called a schwannoma in my brain. Benign, she told us, and smaller than they had originally thought. Centered on the balance and hearing part of my brain on one side (I think it was the right, which would affect the left side). She scared the hell out of me and my family. Schwannoma is a collection of extra cells that grows extremely slowly. They apparently don’t do anything unless it is causing problems. I’ve had balance problems for 13 years, attributed to migraine associated vertigo. Now we were left wondering if it was the schwannoma instead.

The neurologist talked to her supervisor about the guillain barre syndrome, and they decided it didn’t really match what was happening, and so the lumbar puncture was canceled. And I was told I was dehydrated and undernourished, and that my inactivity had led me to the pains I was having, as well as the lethargy and stiffness. I was told to go home, stay hydrated, eat more, and move.

(and not so incidentally, after weeks of no update from the neurologist, I made an appointment with their out-patient clinic, went out with my supportive family, only to be told by the resident and senior neurologist that there was nothing showing up on my MRI at all — well, except my brain…so the whole scare was a false reading! ARG!)

After the ER visit, the next day, I had that horrible panic attack and eventual realization about Prilosec.

 

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