[insert catchy subject line]

(Started while waiting in the doctor's office about 1 week ago. Just didn't find time to post it)

I've been thinking a lot about how so many things have been affecting my life, my relationships, and my thoughts. Primarily, how this diagnosis has affected these things. Everyone who has had ALS for a while or who is close with someone who has says don't let it change your life. Don't let it keep you from doing the things you want to do. Don't let it rule you or make decisions for you.

Truth is, though, I've let it change so many of my thoughts, my outlooks, my philosophies.

I'm not as kind, at least in my head anyway, and sometimes outside of it. I used to think it was worthwhile to be kind and patient with everyone I meet, or at least try my hardest to. I was the laid back person, the person who didn't disagree with others, argued out of fun but not so much out of spite, generally had no beef with others and others had none with me.

I just don't know lately. I don't want to hear complaining, and not because I feel like others don't have anything to complain about compared to me - it's all relative and I know this. But I just don't want to hear it. Maybe I feel like I have enough to bring me down lately, the last thing I want is to head more of what's bringing other people down. I need positives, not negatives. I also feel like I just don't want to put up with as much anymore. A few weeks ago, I was the most assertive I think I'd ever been and walked out of a restaurant after being treated rudely by the hostess, to the point of even commenting on her rudeness to her face. I never do that! If I'm not always a patient person, I'm least a restrained one who, although I think rude thoughts, would never say them to the person. It was so out of character and yet, it felt so liberating. A few days later I was heinously rude to one of Georgi's co-workers, a woman whom I don't know very well but do not have good feelings about. Granted, I was in a foul mood that day to start, but even so - the former me would have just not said word one to her all day. Instead I was just a bitch most of the day. And so the worst part? I feel bad, but only to an extent, and it isn't an extent at which I would regret much of what I said or did. My true feelings were expressed, just not in the most calm of ways.

Ugh.

Ok, so more than any of that lately, my biggest emotion is fear. It's been an easy one to ignore lately. I feel like I'm always trying to make other people feel better about my diagnosis rather than them try to lighten my mood. I guess this is typical. But I'm scared. Terrified, often. I hate not knowing what is to come. I hate not knowing if pregnancy is a good idea or a bad one. I'm afraid of not doing everything I can for myself to increase my time. I'm afraid of not having enough time. I never really addressed it before. I guess I really have been in denial this whole time. My next clinic appointment is in 5 days and, for some reason, it just feels so much more real now. It's sinking in a little more. I'm beginning a journey with a group of people who will follow me until the end. In filling out this pre-visit screening form, I was able to answer no to almost every question.

But then it hit me.

One day, I will answer yes.

One day, I will have shortness of breath when talking
One day, I will have difficulty swallowing.
One day, I will not be able to get dressed on my own.

And so much more. How can this be?

Today, while writing this, was the first time I've cried over this disease since my initial diagnosis. It really is hitting me again.

a confirmed kill.

Ok, so it's not as depressing as the title would make you believe, but in a way, it is true. I have been confirmed to have the disease that may very well kill me.

Ok, yeah. It is depressing.

The trip to Durham was quite bittersweet. My aunt and uncle finally got to meet Georgi, and they loved her. Seeing them reminds me that having a small family is ok, because there is still a huge amount of love. Knowing now, essentially, what is to come, makes me want to spend so much more time with them. I found a note in a box of old letters my mom had been saving (filled with stuff that even my grandmother was saving) that was from my Uncle Shawn. My mom and he never seemed to be that close. I was told they weren't close while they were growing up, and, as I was growing up, I can only faintly remember any times spent with them. In fact, most are only through the few pictures we had. The note, one of the only ones I think he's ever written to anybody, was to my mom after his first child, my cousin Wesley, was born. He wrote how he wished we could all be closer so that he could see me grow up and my mom could see Wes grow up. Such simple words, but coming from my uncle who is a notorious joker and rarely serious about anything, showed such a desire to reach out and be closer to his family, or at least to have that close extended family that so many other people are able to have. Almost 20 years later, that closeness is finally being sealed. Unfortunately, neither my mom nor my uncle got to see the others kids grow up the way both had wished, but we're here now, and now is all that truly matters.

I love that they live in Durham, and I love that Duke has an ALS clinic. It means that I do not have to face this disease alone. It means that after an emotional day of being told things I didn't want to hear, Georgi and I could go back to their house, eat pizza, watch my uncle pout like a 5yo for my aunt to make something freshly baked for dessert, listen to her give in, and laugh like the previous 8 hours didn't happen.

The clinic was as good as it could have been. The neurologist bears the resemblance of the typical British rocker and is very straight forward with what he says. I don't know if it makes me have confidence in him or just feel an odd connection because is hair is all a mess - on purpose.

I don't know how this all makes me feel lately. It's very hard to say in fact. My meds have kicked in full force and bad things don't seem so bad lately, even though they truly are. Nothing has changed, only my chemical imbalance has been corrected. In reality, things are worse. I don't feel a hope to hold onto. A hope for Lyme's disease. A hope for cancer. A hope for pinched cervical nerves. I was even told to hope for HIV. Eh. In the words of Julia Roberts in Pretty Woman, I'm a safety girl.

I can't tell if it's the drugs or something else that make me ok to talk about it with other people now. I smile, I joke, and I say "It's ok!" when people express sorrow for what I'm going through. I don't think this is denial, but I think this is my way of shielding my emotions. If I take any time to really sit and think about it, I'm still terrified. I still can't believe this is real. I still have trouble believing it's really happening. I have an arm brace now to help me type and my foot has started catching when I walk, and yet I still pretend sometimes that nothing is wrong with me. I don't want people feeling sorry for me and I don't want people worrying. I want things to go back to the way they were.

The doc said I will probably progress slow, although there are no guarantees. He said 10% live over 10 years.

10 years.

I'd be 38.

If I had a child tomorrow, she'd be 10.

What?

Nevermind about watching other peoples' kids grow up, even if they are family members. I just want to see my own grow up. I want to see them in school plays and talent shows, soccer games and ballet recitals, debate team and homecoming dances. I want to be there in PTA meetings and chaperoning spring break trips. All the milestones and then some.

I hate sometimes that the one thing I want so badly may come at such a price, and I can only hope that the doc's statistics are sorely outdated.

life: a noun.

This evening I read through a letter written by someone on one fateful night 11 months ago. I was looking for my resume saved in my email somewhere (which I never found). I've only read said letter maybe 3 times. Today being probably the 4th. It breaks my heart on a different level and in a different way every time, but tonight, I was able to process my feelings about it a little more. Maybe because it's Thanksgiving and I have a whole new perspective. Who knows?

Whenever I think about that night, I feel sick. Physically sick. Feelings of dread, of panic, of anger, and of guilt collide within my heart and my stomach. Not because I feel them now, but remembering how I felt then, and how real it was. At times I can make a stone of myself and not show emotion about it, but almost always, the lump is sitting in the back of my throat and the tears are just barely remaining underneath the surface.

Fact is, I've been in that same place myself on more than one occasion. Having that feeling of complete hopelessness and seeing only one way to fix it - for good. Feeling like nothing I do will ever change the past and nothing will ever make now feel any better. Knowing how that feels helped me to get over the anger. I know that I'll never feel the hurt she felt in that head space she was in, but I'll always know how it's felt for me, and that equates well enough. As for the rest of the emotions - well - only time will heal those. Time, and my "happy birthday" meditation.

So it made me think about life in general. It is true what they say - life is short, it's fragile, and it's oh so precious. For all the people out there who take their own lives for whatever reason, there are so many, many more who sit and wish for another few years, another few months, or even just another day. Truth is, we will all die one day. The thought of it scares me to the core, and I am not ashamed to admit that. I don't have faith in the existence of heaven or an afterlife (read back 2 journal entries for further clarification). I don't have any comforting vision of where I will go or what will happen to me when I do. I am very comfortable where I'm at.

Perspective changes as cicumstance changes, though. I am more thankful for my life today than I was a few months ago. Being given a terminal diagnosis does that to a person, I suppose. I am not invincible. I cannot take the same things for granted that I did a year ago, or even a couple of months ago. I'm learning to be thankful of small things. I am otherwise healthy. I can still wake up each day next to someone I adore with all my heart. I can still wake up each day, and experience each day, period. Truth is, when all is said and done, I just always want the ability to wake up and have a day. It may not always be good. It may suck complete ass some days. But I want it.

11 months ago. It seems like a lifetime ago with all that has happened in the meantime, and when I really think about it, I realize that I am thankful for that night. I wish we were all born being completely thankful for our lives and living every moment to the fullest. Unfortunately, I don't think it happens like that. That night forced me to look at my own life, take notice of my own unhappiness, and start correcting it. I saw, lying on that stretcher, someone I couldn't fathom not having in my life. In spite of the difficult road she's taken, I take comfort in knowing she's finding her purpose here and comfort in her own skin, as I've slowly been finding it in myself.

Without the events of 11 months ago, she wouldn't have been sitting in that doctor's office with me 2 months ago, helping me through what has so far felt like my hardest life test yet. So I'm thankful. For all the good times and all the bad times, and not because one makes the other easier to deal with, but because without one, the other may not ever happen. It is the make-up of life.

You, my love, have managed to be present in my life, and I am forever thankful.

Main Entry: life
Pronunciation: 'lIf
Function: noun
Inflected Form: plural lives /'lIvz/
1 a : the quality thatdistinguishes a vital and functional plant or animal from a dead body b : a state of living characterized by capacity for metabolism, growth, reaction to stimuli, and reproduction
2 a : the sequence of physical and mental experiences that make up the existence of an individual b : a specific part or aspect of the process of living life> life> —life·less /'lIf-l&s/ adjective

tolerance. or a lack thereof.

I've never thought of myself as being gay. I dislike labels, and the thought of calling myself a lesbian makes me giggle just a little. But I did marry a woman. A woman who I fell madly in love with, completely unexpectedly. It's always been my thought that I am attracted to a person. Not a gender, not a race, but more a personality, an appearance, a connection. I'm sticking with that. So maybe I guess it could have been expected?

My mom is a lesbian. I've known since I was old enough to understand what it was, even before she actually came out to me. Come on Mom, no boyfriends? Hardly even have male friends? Oh, except for Harry, who barely qualified as one, and some professors who curiously are single dads living with another male! And why do all of these women have short hair, and none wear dresses, and they don't look or act a thing like my friends' moms. And where are their husbands or boyfriends? I learned the meaning of acronyms such as GLB(+TQ after a while), PFLAG, NOW, and GLAAD before I reached middle school. I attended protests of Focus on the Family and other discriminatory entities and marched in my first large-scale pride parade when I was 11. From the time I can remember, it's been a part of my life. A part of me.

I refuse to think that homosexuality could in any way be genetic, or that I became gay because my mom was. But I think what I came to believe from a very early age was that gender didn't matter. I could love anyone I wanted and there was nothing wrong with that. I also learned how hurtful people could be over the issue of love. I remember being chased in the car with my mom by a group of young men yelling obscenities. She had picked me up from school and we were on our way home. I remember being almost in tears, scared, and begging her not to drive anywhere near home until they went away. After a while I blocked out all the cruel things people yelled and did in opposition at parades. I just didn't understand. As a child in that situation, each attack felt as personal as if it had been directed actually at me.

Almost 20 years later, it's disheartening to see that times haven't changed much in so many peoples' eyes. What's worse is to feel that intolerance from family members. I've known for a while that my mom's lifestyle has been the reason for us not having contact with some extended family. I've been fine with that. I never had time to attach with them, so it was no skin off my back, and again, if you don't love my mom then I don't really wish to be around you. As such, my family is small, but supportive. When they learned of my divorce and the start of a new relationship, no one seemed to skip a beat. So ok, what's the next step from falling in love and finding the person you want to spend your life with? Marriage. Yes? Apparently no.

So my grandfather came out of left field last week and said what I did was sick, and not to dare bring Georgi to ever visit. He who has never shown any issues with my mom or issues with me when he learned of Georgi and I.

Obviously it's not just babies. Apparently marriage changes everything, as well.

I hate this feeling. It takes me back to being 11, having a great day meeting other kids of queers, getting invited to march in the parade, feeling like I belonged in a way I couldn't feel anywhere else - being immensely happy - then out of nowhere hearing someone yell
"BURN IN HELL YOU FUCKING FAGS!"

Happiness turned to small, helpless, and hated in an instant.

What I don't understand is why someone can be fine with me loving a woman, but not with marrying her.

Georgi and I were on the local news recently talking about our marriage in California and our feelings after the passing of Prop 8. I didn't really tell anyone at work about it, or the marriage. I've learned that while I don't need to be private, advertising isn't necessary either. I get confused by responses from those who did happen to see it. The only response I get is "you looked so good." Yeah? I guess a "congratulations on your marriage," was too much to hope for.

So I don't really know what ultimate point I'm trying to make with this today. I've just had frustration over this lack of acceptance and apparent discomfort people feel. Society has come so far, but seems so stalled on this issue that shouldn't and doesn't affect anyone but the two individuals involved.

The simple truth is that in Georgi, I found the same degree of comfort I had with the women my mom had around growing up who I was generally enamored by. Strong, opinionated, independent, beautiful, vibrant women. I found that comfort which initially drew me to her, and being near her I found so many more reasons why with her was where I was meant to be. It's made me happier than I could have imagined and filled an emptiness that I didn't even know existed until she came into my life.

I'm in love. I've found and married my soul mate. I want to wake up to this same face everyday for the rest of my life. Where's the problem in that? None. Except the word "lesbian" still makes me giggle a little on the inside.

faith

In the illustrious words of George Michael, one has "gotta have faith-a-faith-a-faith." But mine is in short supply these days. In 2003, a Harris Poll of over 2,000 Americans found that 90% believe in God. I've tried since I was a child to understand this concept of "God," an all-knowing, all-powerful being, always watching us, guiding us to right and wrong. Something along those lines, right? But what makes one person believe and another not? How can one person have horrible things happen to them and believe more in a God because of it, and another have the same things happen and believe less?

Faith.

I never knew how to have it growing up. Never understood it. Couldn't comprehend the idea of putting my life in the hands of an entity that I didn't feel had ever touched my life. Not out of some spite for the horrible things I went through, but simply because I never felt it - it being whatever people who do believe have felt. My mom did take me to church for a time, and I did try to feign belief there and in front of friends. But it just wasn't there. To me, saying I believed in God was about equal to saying I believed in Santa Claus.

Since late last year, I've been trying to figure out why things happen the way they happen. Feeling that it's just meant to be has helped a little. But lately I'm grasping at straws for anything that will give me comfort right now in my own skin. Something is missing. There has to be some ultimate reason why life just sucks some days. It sucks some days to make us cherish the good days just that much more. Well, that's nice to think when it's little things.

I experienced over 5 years of abuse that no little girl ever should growing up, before I could even understand what exactly was being done and why it was so horribly wrong. I didn't even comprehend in the years following how drastically it would affect my life. Add on a mountain of other shit through the years, and I still felt like I was coming out on top. I'd found my place in the world, a wonderful, supportive, loving parter, and was reaching my goals. In spite of all that had happened, I was surviving.

Then a pinched nerve turns into a terminal illness.

Seriously? Why? [Enter the anger stage] After a while enough is enough. If I had a staunch hatred of religion or disbelief in God, I would say this is fair enough proof that God doesn't exist. If he did, these things wouldn't happen to people. He would say, at some point, enough is enough. This woman has been through the ringer, let's give her a break. On the flip side, if I was a believer, I could say it is all happening for some greater purpose. That somewhere, through all of this, I will come out on top. If I am good, good things will ultimately happen. It's God's will and I will be protected. I will only be given what I can handle. I could pray and feel better knowing that I'll never be alone in this journey.

At this point, I'd gladly take either of those options. They say to just look into your heart and you'll know what you believe. I believe in sheer avoidance. So how has that worked for you, Michelle? Great. Absolutely great. See the sarcasm? Something is missing. I have all that I need right now, and yet something is missing inside. Something to make it all come together, something to make it possible to find a purpose. Something to say that there is a reason for everything that has happened and will happen. Maybe then I could take whatever the next blow will be, and find a way to accept all the previous ones.

I try to believe that this is happening for a reason, that everything has. It's so impossible some days. But it's also impossible not to believe it. I don't know what to think, to believe. And the sad fact is, even if I knew, I can't just make it be.

God is still Santa Claus, and I'm the girl who stopped believing when I was 7.

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?