control & eggs

My therapist this week said I need to work on learning to accept situations and events. To learn to accept that things will happen, but that it doesn't have to change my life for the worse. To spend less time concentrating on how I can control everything that happens to me and more time controlling my reactions to what happens. She said to focus on the idea that I am not events. I am not a disease. I am not a circumstance. She said "you are not it, no matter what it is." And that because of that, I can control how I let it affect me.

I really wish it were so easy.

In fact, what's easiest for me is to just stop eating. Yes. Let's throw a little anorexia into the mix. Late last year I dropped a little over 30lbs in the space of 2 months. I honestly didn't know what I was doing at the time. I never really equated not eating with gaining control, but looking back, it's exactly what I was doing. My marriage was quickly dissolving, my friends were choosing sides (not mine), work was a never-ending battle of short staffing and homicidal patients, and I was basically torturing myself by getting up in the morning, either doing intern hours or ride-along hours for school for 8-10 hrs, then going home, changing, and going to work for 12. My depression was also back in full force. I made the excuse of just being too stressed to eat, or even forgetting. Sometimes it was that I was just too busy. In truth, I had started to develop a system. Starbucks coffee and Lifesaver candies. Once I knew I could sustain myself on it, it was almost like a game. How little can I get away with? All I really need is to keep my blood sugar up, stay awake, and stay hydrated. Candy, water, and coffee. Then the worst thing that could have happened, happened - my jeans were looser. I was able to wear tighter shirts and not feel gross about my stomach. The scrub pants that I used to have to wear my slimming underwear to get on, now fell off if they were untied. In short, I had accomplished in 2 months what I had tried for 5 years to do in all of the "convential" ways. Without realizing it, I had dropped from 160 to, at the lowest, 127 in less than 60 days.

It was a very conflicting time. I was finally becoming happy with how I looked, people were commenting, and yet I was terrified at what I may have been doing to my body on the inside, and was scared at how far it might go. It took a while to get back to being healthy. I started trading candy for Boost shakes. Eating the only meals that seemed appetizing, and many of them (Amy's Cheese Enchiladas). I also had a couple of diligent watchers, reminding me now and then that it was lunch time or dinner time (thank you, Ife & Georgi).

I worry about getting in that frame of mind again, and yet sometimes, I miss it. I had a focus and I was succeeding. While everything else crashed around me, here was something I was becoming good at, and seeing results that, superficially, made me happy.

Georgi laughs at how opposite we are. She eats when she's stressed out, I tend to try and starve myself.

So I guess my therapist's whole take-home message was this: my old ways of dealing with shit have obviously not worked for me. With all that I'm facing now, and with all that I will surely have to face in the future, it is in my best interest to find something else to control. I can't control the world. I can't control what happens to me. But I can control how it makes me feel, and how I let it make me feel. So we'll see what happens.

Until I get to that point, she taught me a little relaxation technique where I take deep breaths and hum Happy Birthday. Something about scrambling my brain.

This is your brain.

This is your brain on
the Happy Birthday
meditation.

Any questions?

focus

I have trouble concentrating lately. Concentration and motivation probably. I'm sure it's just anxiety.

We did the ALS Walk in Richmond on Saturday. It was really good to go, and just amazing to see all of the support that came out. Georgi and my mom came, as well as Lila and Frida (my two classmates from Vienna) and their boyfriends. It has been almost a year since I had seen them last, and sort of out of the blue, Frida messaged me on myspace, having heard about my diagnosis. Her and Lila joined my walk team right away. I can't really describe the feeling that gave me. I lost a lot of people I thought were my friends when I got divorced. Whether it was because they weren't really my friends, or were only "bar friends," or through my own bad judgements, it was hard to wake up one day and know they weren't going to be there. I spent more time devoting attention to friendships I had almost let slide, mostly with former nursing school classmates. I cherish them greatly. But my Austria girls are special in their very own category. We spent every day of 2 weeks together in Vienna and it's true what they say about study abroad trips - you make lasting friendships, even when you don't plan to. After coming home, it was 6 months before I saw them again at my 27th birthday party (surprise!!). Granted, one of them, Kelsey, was MIA, but to see Lila and Frida again was great. It's been a year and a half since the trip, but being around them gives me the same good feelings I had when I was in Vienna. It takes me back to a very good place and I am happy.

I wish I could be one of those people who just lives day to day. No definite plans. Just takes it all as it comes. I try to, honestly I do. But I am nothing without my planning, nothing without my list of things to do, whether on paper or in my head. The worst part about it is learning to accept it when plans fall through, or even fail to start in the first place. And it can be so stupid. An afternoon set up with certain things to do, certain places to go, and something comes up. A planned surprise that gets guessed by the surprisee. A life plan that gets a terminal illness thrown into it, like someone rollerskating down a hill and a stick is thrown in her path. I feel lately like I've been tripped up, fallen, busted, and am having serious trouble getting back up. Even when everyone around me has an out-stretched arm, inviting untold amounts of help and support.

It doesn't help the fact that I was on a roll, and now I don't even remember how to rollerskate.

grief

In nursing school, they teach us the stages of grief. Next to the neurological system, that is another area that I didn't pay much attention to. I'm not good with grief. Not good with sadness. Not good with death. I work in an ICU where people do die on occasion, despite our best efforts to save them. But at the slightest inkling of someone needing a shoulder to cry on, my shoulder runs off to call in the chaplain's shoulder. I don't handle it well. I've tried speculating on the reasons why - nothing specific has ever come to mind. My family has never been filled with people who know how to support another emotionally. Oh, you're having a hard time? Well, here ... let me call in someone better who can help you because I have too much undealt with shit that helping you might stir up in me and I'm not ready for that. That about sums it up. I guess we're notorious for not addressing our issues. I know I am. Sometimes feigning ignorance is better than accepting you went through things that no person should. That is until it bites you in the ass later.

I started seeing a new therapist this week. She's the 3rd one this year. I guess maybe I'm still searching for my next Robyn. Robyn was my therapist as a teenager. She was amazing. While I was never very forthcoming with anything, she always knew the exact way to pull it out of me and the exact way to make me face things that I had been trying to so very hard to forget. There was a point at which things got to be really bad, and for whatever reason, I stopped seeing her and was placed on medication instead. That's probably not exactly how it happened, but it is how I remember seeing it. I remember thinking that maybe it was better for me to go back to keeping all that stuff inside. Obviously it was too much for anyone to handle so it was better just pushed back under the rug. I've since learned that that is the worst possible thing to do, and I see the effects of it every day.

So anyhow, grief. Yes. Stages. They were developed by Kubler-Ross and are as follows:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

I experience any number of these multiple times on any given day when I think about having ALS. My most common are denial, anger, and depression. I think I've only faked acceptance, and bargaining is a rare one.

It's really hard to not have some degree of denial while waiting for a 2nd opinion. There's a large place in me that is holding out hope for an alternative diagnosis. At this point, most anything is preferred. Cancer? Bring on the chemo! Denial and anger present themselves together a lot of the time. This can't be true! What did I ever do?! Why me?? That sums it up. It's hard for me to be around people who are telling me to fight it. Fight what? How can you tell me to fight something that I'm still in denial over? How can I fight something that I feel might just be non-existent in the first place. I get very defensive and short with those close to me because of it. It's in my nature to be argumentative and defiant - at least in words and thoughts. I don't want someone telling me "it's ok, you can still do this job without use of your arms." Who says I won't have use of my arms? It's not final yet. Nothing is final yet.

I find it's easier for those around me to plan for my ultimate disability than for me to accept it as really happening. It's easy for them to say "it'll be alright" when they're not the ones slowly feeling themselves slip away. I've been a nurse for 5 years. It's what I know. It's how I identify and validate myself. In 10 months, I've almost completely lost the ability to hold a patient on their side, slide them up in bed, start an IV, put on gloves that actually fit, tear tape, cut gauze, and most recently, tie a tourniquet. Tying a fucking tourniquet. Who knew that after all that training, that would be the one thing to put me over the edge. That would be the one thing to make me wonder what good am I, then? Writing is a joke, typing becomes irritating, and some days I have trouble holding a full glass of water.

I'm told that in time, as the grief model says, I'll soon find acceptance of this. But how soon is too soon? How soon is acceptance really viewed as just giving in? Is it wrong to hold out in hopes that maybe another doctor will find something different, something more acceptable?

civil matrimony

Last Friday, Georgi and I got married in beautiful San Diego, CA. It was something we had been planning for a few months. After the diagnosis, we thought seriously about canceling the trip. I had missed a lot of work and had no vacation time to compensate. We decided to just fuck it. Who cares? We may never have the chance again to get married, so why not?

The Tuesday before we left, we went with my mom to our first ALS support group meeting. I wish I could say it did a lot for me, but I was still at the stage where if you even look with slight pity or sorrow at me, I burst into tears. Even a "you're in my thoughts," sends me over the edge. I was still having trouble accepting any of this as really happening, and more than that, insisting that it must be a mistake and must be something else.

To say I don't still think that a lot of the time would be a complete and utter lie.

Everyone there was very nice, very inspirational in all their own rights, and all older than me. I couldn't concentrate on anyone talking about the latest drug they were on or whether or not to have a feeding tube or the lending closet of wheelchairs and ramps. I wanted to scream, "I DON'T BELONG HERE!" Yup. There's that denial again. Georgi spoke a lot, asked a lot of questions. My mom did a little. We were given a lot of information and a lot of hugs. I also met Libby. The one person so far who has given me even an inkling of hope in all of this. She was diagnosed at my age. Now, 18 years later, she has had 2 kids since, still walks, drives, uses the computer, and eats what she wants. She can even talk still, although difficult to understand at times. Although obviously physically impaired, Libby personifies where I hope to be in 18 years. I spend my time either denying to myself that this is really happening, or sincerely hoping that I'm like Libby and have another 18 years of walking, talking, birthing, driving, typing, eating - living.

My divorce paperwork came in the day before we left. Finally. It had been in the works for months, but for some reason was being looked over in the circuit court. Yes. I was married. To a man. For about 5 years. We had started dating when I was 18, married at 21, before I had much time (or maturity) to evaluate what I wanted out of a partner or out of life. I grew up a lot in 5 years. And grew away.

I met Georgi in August of '07. I started an internship with the forensic team at my hospital, and she was the forensic social worker. Initially, she thought I was a preppie little nurse and was irritated to have me there. I was in amazement that this social worker had a mohawk and tattoos. We quickly grew on each other, though, and quickly developed a friendship. Unbeknownst to each other, we were both dealing with our own demons. We went to dinner one night after she changed jobs and my internship was over. We spent the evening talking about things that I had never been able to talk freely about with another human being. I instantly began to feel a connection with her. From that night on, she was on my mind a large portion of everyday. I thought about how she was doing, what she was doing, when we could hang out together again, and mostly if she was thinking any of the same.

We continued to spend time together, in quite unconventional ways at times. Bingo at her work, the ER while she received IV fluids after being sick, an ice fight in her kitchen, and photobooth pictures while her girlfriend at the time stood by, skeptical. If you had asked either of us at the time if something was going on, we each would have said absolutely not. But it wasn't enough to realistically convince any outsider looking in.

Then one night I almost lost her. I never had her, but I almost lost her. To even think about it now, almost 10 months later, sends chills throughout and makes my eyes well up. I can remember speeding through the Fan, through downtown, into Church Hill, wondering what I would do without her. How would I go on? Who would I talk to? Who would make me smile? I was going through so much and who would be left to be that person I could turn to to say it was going to be ok and to just breath. Just breath. And the sheer ridiculousness of it all hit me. I'd only known her for 4 months, and only a portion of that on a level that could be deemed as a good friendship. But I felt such a driving connection to her that I couldn't shake. Like near her was where I was meant to be, near her I felt whole. And here she was - almost gone.

We spent the next couple of weeks laying out all the cards. She knew all of my demons, I knew all of hers. And at 4am one January morning, everything changed - for the better. I'll never watch Saved by the Bell the same way again.

In the past 10 months, we've done more than some couples do in years. We bought a beautiful house, discussed starting a family, traveled pretty extensively on a tight budget, each changed jobs, and last Friday, got married. We've had more than our share of ups and downs and stress that often feels never-ending. Our time in San Diego could not be described, in the same way that my feelings for her cannot be measured. I can't imagine a day without having her there to come back to. No matter what happens in a day, as long as she's there at the end of it, my life is complete.

the aftermath of diagnosis

It's now been 3 weeks since I was diagnosed. I can sum each week up as such:

Week one: Spinal headache hell.

Week two: Emotional wreck.

Week three: Happily married.

It took me a few days of complete agony to learn that caffeine was the cure to end all spinal headaches. I've never had a migraine and I have a great pain tolerance, but this kept me flat in the bed, unable to focus even on watching TV most of the time. My only saving grace was that, somehow, my higher power (yes, I'm starting to believe) knew I was struggling and decided to air two of my most favorite TV shows - ALF and 3rd Rock from the Sun. It was one of the few things that could bring a smile to my face, and maybe even a chuckle. Lame, you say? Well, I'm quickly learning that it's the little things in life that make it all worthwhile. Georgi and I went to the beach later in the day after all the testing was over.

It's hard to know what to do or think after being told normal progression is 2-5 years. 2-5 years? Are you kidding? So maybe I'll make it to 30, but probably not 35? What. The. Fuck. My first thought was, ok, wheelchair confinement for life. I can handle that. I glossed over the part about eventual respiratory failure. I broke down in tears reading it, and Georgi quickly followed. Our relationship is just beginning. We had plans for babies and late nights working homicides together. Having grandbabies one day and having sex in a nursing home when we're 80. Now they're telling me I won't even see 35? How can this be? They must be wrong. They have to be. Fortunately or unfortunately, the spinal headache kicked in the following day and I could no longer focus on anything in my life save for the feeling that my brain was going to explode. Dr. Paschall equated it to "brain sag," by reducing the amount of fluid the brain floats in, instead it just sinks and sags. I was able to spend a few days in complete oblivion about my diagnosis, and about everything else going on around me. Yay, brain sag!

I was itching to go back to work. And quite a bit scared. My emotions had been bubbling at the surface and it didn't taken much to send me over. Still, I needed to get back to work. Money was tight and I couldn't spend my life dwelling on what may be to come. The first night was ok. I only cried once. No one knew, other than my boss, but everyone was aware that I had missed a bit of time and that something was going on. I don't trust people easily, and while I view my many of STICU colleagues as a sort of extended family, something like this drastically changes the way people view me. I confided in only a few, but even that felt like too much. I don't handle coddling well, I don't always know the proper way to accept sympathy or offers of prayer, and I don't like being treated like I'm already handicapped. In reality, I was having a lot of trouble talking about something that I haven't yet completely accepted as reality. To top it off, everytime I wasn't able to do something, whether it was lift a patient's arm or help to turn, I was instantly depressed. Whereas before I just thought it was strange that I couldn't do things the same way I used to, this time was different. I now knew why I couldn't do these things. Knowing the reason reminded me what the reason ultimately meant for me. And then came the waterworks while simply trying to put a patient's arm on a pillow. I started longing for ignorance.

The most difficult part of all was, and is still, waiting. I'm given a diagnosis, told that it's just too devastating for the neurologist to finalize, and then am expected to wait until I'm eventually called with my appointment for a 2nd opinion. Wait and do what? Go on with life? How? How do I go on with life when life is what I've just been told I have in limited quantity? What do I do? What do I tell people? Yes, fellow nurse, I'm crying because I've been told I probably have this terminal illness but no one will tell me for sure for another 2-3 months, yet in the meantime my function continues to worsen. I'm usually pretty good with math, but lately I've become lazy, so I haven't tried to equate what 2-3 months means for someone who's been told they have 2-5 years left. What I can say is that it's a pretty long fucking time.

Once again, at the point I had reached ultimate despair, my beautiful live-in social worker came to the rescue. Georgi called the ALS clinic at Duke, where I would be getting my 2nd opinion, and explained to them everything that I had been going through and asked a lot of questions. They gave her a lot of information that was eventually able to put me at some ease. My appointment is scheduled for December 2nd, and I'll spend a day in the clinic meeting with a variety of specialists to confirm my diagnosis and give me treatment options.

At least then maybe I'll know whether I should be coming or going or staying or flying or diving or whatever else this disease wants of me. Or what I want of myself.

the build-up

Today is day 3 after diagnosis. I am still nursing one hell of a spinal headache from the tap. My emotional state varies from hour to hour, moment to moment, second to second.

It all started in January, as far as I can remember anyway. I would start an IV. I'd hold a patient's arm with my left hand, the IV catheter in my right. The needle would puncture the skin, I'd feel it pierce the vein and see the flash, then I'd attempt to thread the catheter over the needle into the vein with my right index finger. But my finger wouldn't move. Then it came back. So weird! This went on for a few weeks. One moment my finger worked, the next it didn't. When I would try to show a co-worker, it would be normal. I felt just a little nuts.

By March, it was continuous. I couldn't lift my index finger. No pointing at something, no flashing peace signs, no movement at all at the main knuckle. Typing became difficult. I had to learn a new way to start IVs, usually using my middle finger instead. Co-workers began calling it, affectionately, my "retarded finger." I had gone to see my primary care doctor for something unrelated and I mentioned my hand weakness before leaving. I was asked, "Does it hurt? Do you have any numbness or tingling?" Well, no. None of that. Apparently it wasn't significant enough to follow any further. I had an HMO at the time, so that meant I needed my PCP to take me seriously in order to get any further with figuring out what was going on.

In May I changed jobs. I went back to work in the ICU. That meant going back to my old insurance. A PPO!! My first step? An appointment with Dr. Isaacs, orthopedic surgeon. Surely, if it was something going on with my hand, he would figure it out. In mid-May, I had my first appointment. I stumped both the nurse and the resident. Dr. Isaacs came in, took a few looks, and squeezed a point on my forearm, asking if that hurt. It did. He said he was pretty sure it was a compressed posterior interosseous nerve. Surgery was probably going to be the key, but first, an EMG - electromyograph.

I had my first EMG in June on my right arm. Georgi came with me, as I was prepped that it would be a bit uncomfortable. "A bit." Whatever. It's bad enough having heavy shocks sent through my wrist into my hand. Quite worse having about 20 needle sticks over my right arm (upper and lower), neck, and hand. The worst part of it all was being scolded by the woman performing the test, saying I wasn't relaxing my arm enough, thus screwing up the test. Sure, I was crying. It hurt like hell. But my arm was relaxed when she said to relax it. I would later learn that none of it was my fault, that it was a pretty big deal that the test showed my arm still sending signals when I thought it was relaxed. Either way, the doctor doing the test confirmed that I was having decreased signals coming from the suspected bad nerve.

I was scheduled for surgery on August 8th. I ensured that all of the right people would be taking care of me, from anesthesiologist to CRNA to residents with Dr. Isaacs. I received a nerve block which numbed everything from my right shoulder down. For me, it was a pretty good experience. I was never completely out and never had any pain, save for Dr. Isaacs leaning on my pelvis every now and then. The only bad thing - nothing out of the ordinary was found, and because of this, the surgery was extended into a full exploration for anything abnormal. Today, this equates to a pretty ugly 6 inch scar on my right forearm. I went home with a large splint, a sling, a drain, and a nifty ball that gave me continuous dosing of numbing medicine. Long story short, never had any post-op pain (yay!), spent 4 weeks on light duty at work (read: "overpaid secretary"), and when all was said and done, no change. In fact, it only got worse.

On my 2 month post-op visit to Dr. Isaacs, I expressed concern that my right hand was worse and I was starting to get the same initial symptoms in my left middle finger - intermittent finger drop. At this point, I would expect many surgeons to say "well, just wait another month." Instead, he got on the phone that was in the clinic room and placed a direct call in the OR to Dr. Graham, a neurosurgeon with whom I've worked a few times and have incredible respect for.

I was seen the next morning in Dr. Graham's office. He greeted me and then, in his usual quiet manner, just studied me for a few minutes. I was asked to move my neck in certain ways, arms in other ways, and asked if there was any strange sensation. No. Any pain? No. No numbness or tingling? Nope. And you're sure, no pain ever? Not in the slightest. Words were muttered such as "motor" and "neuron" and "disease." Come again? I didn't quite listen that well during the neuro section of nursing school or anatomy and physiology. Dr. Graham said he was going to refer me to a neurologist, and that he wanted me to go the next morning but that it was a little bit of a drive. Ok, 1 hour? Try 3. Now, I understand that in the medical profession, there is a degree of professional courtesy, especially if you have previously worked with someone and are now being treated by them. Things are done in a more timely fashion than would be for most. But seeing a neurologist 3 hours away the following morning? The phrase, "what's up, doc?" comes to mind. I asked Dr. Graham what he was thinking, what his hunch was. He said worst case, ALS, and asked if I had heard of it before. Yeah. I wrote a paper on it in my 11th grade anatomy and physiology class.

The following morning, at 6am, Georgi and I left for the Eastern Shore to see Dr. Paschall. I was warned by Dr. Graham he was a bit like the doc on House, and that he very well may throw a cane at me, even though he doesn't use one. Well, he didn't throw a cane, but he was 20 minutes late arriving and was probably one of the most informal and loudspoken docs I'd ever met. I liked him! He spent almost 2 hours doing a full neurological exam on me. I failed in every way that he didn't want me to fail in. I had no abdominal reflexes. My Babinski reflex was doing something it wasn't supposed to do (again, I didn't pay much attention to the neuro sections in school). My knee reflexes were showing cross adduction, meaning he'd hit the right and the left would move, too. He said he wanted my EMG repeated, and this time to include all extremities. He also wanted an MRI, but was convinced he wouldn't get preauth from my insurance for another week or more. He obviously had not met my wonderful live-in social worker :) Georgi was on the phone right away with Anthem getting me preauth'd for the next day.

October 1st was the day I saw Dr. Paschall in the clinic. October 2nd was the day he decided to run every test known to mankind. October 2nd was not a good day. It started with an MRI of my neck. Hard to stay completely still when I have involuntary twitching. Dr. Paschall came down in the middle and was apparently upset that it was turning out to be a perfect MRI. Next was the EMG. Not as overly traumatic as the first, but definitely more painful in parts. Dr. Paschall did it himself and did a great job of making it as quick as he could. Still, it was a dirty EMG. Not good. Next it was down to the ER for a lumbar puncture and spinal tap. Pretty uncomfortable, but mostly when the needle hit a nerve and sent awful twinges into my right buttocks and thigh. I think I yelled "ow! my ass!" more than once, and was told to stop making Dr. Paschall laugh. The results came back - normal. Next was a chest xray and CT scan of my head. Normal. Go figure. In addition, about 15-20 vials of blood. My CK was the only abnormal value. Elevated = muscle wasting = another thing to rule me in instead of out.

At the end of it all, Dr. Paschall still wouldn't give the final diagnosis, still holding out hope that maybe something in my blood would come back to explain why a 27yo female was having these symptoms. Yet at the same time, urging me to get into Duke or UVA for a 2nd opinion. 2nd opinion, meaning he's given a 1st opinion?

Eh?

Come again?