5.31.2008

Welcome My Friends...

To the hospital stay that never ends.

Right now I'm writing from an isolation room of my local major medical establishment. There's a fabulous little room the size of a medium-sized closet that every person who comes in or out has to pass through. Upon entering they wash up, throw on one of those lovely yellow medical drapes usually reserved for the really bloody scenes in ER, don either a yellow flat mask, the kind that hooks around your ears, or an ever-so-pleasant conical-type mask that pretty much seals the entire area around your mouth. On the way out, they have to reverse this lovely process. My family eschews this who process entirely as they are all pretty sure that I either don't have TB, the possibility of which is the reason for my lock down, or they are sure that if I have TB, they've already been exposed and some medical mask is going to do very little to stop that. This wonderful little isolation, that will last until Monday evening, my thirteenth night in this fucking hospital is the culmination of two weeks of an emotional gravitron that's not
going to stop spinning once I'm discharged sometime next week.

So I'll start at the beginning, narrative is my thing after all and I'm not a good enough writer to start anywhere else. The day before Mother's day, my BF's ex-wife dropped off the little man with us and told us that she though we was coming down with something; which of course he is because he spends far too much time in her mother's smoke-filled house and he's always come down with something…god forbid she even spend a second's thought on my compromised immune system, but more on that later.
The boy was a wreck on Mother's day, lethargic, fevers, but still in good spirits. Monday he actually slept until after 11 am and the asked to be put down for a Four Hour Nap at one-thirty.. Tuesday was a repeat, no playing, no interest in crayons or cooking. Only on Tuesday I was feeling it too. I was exhausted and I hardly left the couch all day. He went hom to his mom's that night, but I only continued to feel shittier. By Thursday evening I could feel it creeping into my bronchial tubes and by Saturday night it was full blown bronchitis. So my self-diagnosing skills went to work and I filled a prescription for Levaquin; it did wonders for my cold and it made the levels of my blood thinners spike from a normal 2.5 to a lovely over-blown 4.5.
Tuesday was supposed to be one of the top days of my life. I had my first job interview for a teaching job, something I've been working toward for the last six years of my life. Two days following that I was supposed to walk in my college graduation. Biggest week of my life, and in grand style, after I've done my hair and makeup to perfection, pressed my suit and was about to get dressed and I cough several times, culminating in a series of tissues filled with blood clots and half-dollar sized pools of blood. Yeah. Sucks.

So I called my interview and they let me reschedule because of the emergency. Called the BF and asked him to come home as I had the little man napping in the next room and couldn't just leave and shook nervously as I woke, changed and dressed him. The xray and CT scans in the emergency room both showed occlusions that looked like pneumonia, and though I didn't have a fever or a productive cough (besides the blood), they admitted me to the med-surg floor under that diagnosis, which would of course soon prove to be bunk.

I started having dizzy spells, trouble walking the five feet between my bed and my bathroom without becoming short of breathe. So respiratory therapists, cardiologists and pulmonologists were all called in to consult. They opted to go with an echocardiogram because of the tachycardia that I'd been running since being admitted and the hole between the left and right atria of my heart. The echo showed that the hole was too small and more of a flap than a hole, not enough to cause the tachycardia or the breathing problems. But, they found dangerously elevated blood pressures in the right side of my heart and in my lungs. They followed up the echo with a right-side cardiac catheterization that confirmed their diagnosis. They call it pulmonary hypertension (PH). Apparently it had a damn good chance of killing me. That's the first time I've actually acknowledged that one. With what I know about lupus and other general medical issues, I knew instantly that with a condition like this I'm pretty much out of the running for pregnancy as the strain on my heart would kill me along with the baby. I've been able to acknowledge that one, not accept it, but acknowledge it. I don't even want to think about the whole death part yet. I've got a stack of printouts from the Mayo Clinic and elsewhere that I refuse to read during this extended stay at the hospital. I have too much anxiety in my world right now, and the anti-anxiety drugs are helping with that, but I don't want to overload things and worry myself crazy…I leave that up to my mom and BF, who are seriously showing signs of worry and stress. I feel so bad that they have to deal with all of the emotion of this.
So just as we're starting to make plans for me to leave (two days after missing my graduation), waiting for my anti-coagulation levels to reach normal so that I could be discharged, the breathing problems were getting worse. On normal room air my blood was absorbing 80% of the oxygen that I should've. After adding 6L of O2 through one of those oh-so-attractive nasal cannulas I was up to 90-94% and able to walk to the bathroom without getting breathless. It was better, but not good enough. So the pulmonologist ordered a high definition CT scan, so that they could get a really good look. The CT scan did not show anything hopeful. The single occlusion that they'd seen in the upper left lobe of my lung in the ER was now multiple occlusions, or infarctions, or infections of some kind and though I was gearing up to leave the hospital in time for the graduation party that my mom and I had been planning for nearly three months, those plans quickly went right out the window. The pulmonologist felt that he needed to do a bronchoscopy and we agreed. So the nest morning he looked around my chest, took samples, flushed it out with saline. It was the most horrible experience of my life. When I woke up my chest, throat and mouth were all full of saline. I felt panicked. I felt like I was drowning. I was still mildly sedated as I coughed the fluid out and hoped I'd never have to go through that ever again.

There are two basic kinds of pulmonary hypertension. Primary leads to a bleak prognosis (from what I'm told), but secondary pulmonary hypertension is being caused by another disease. Lupus or a mixed connective tissue disorder were the most probable causes given my history, but there was still the possibility that the PH could be caused but a bacterial infection which could be more easily reversed and possible cure the PH altogether. This was what everyone was pulling for, but not what we got. The lung obstructions were caused by autoimmune related inflammation, so steroids, massive doses of steroids, are the treatment along with vasodilators that will treat the PH directly.

So again I wait. The steroids are kicking in and my breathing is getting better – I'm only on 2L of O2 now. As soon my blood is back to a clotting level I can go home – barring any further setbacks.

So now I'll go to sleep, aided by great big doses of narcotics and other psychotropic drugs and try not to think about how badly this disease could cripple all of the dreams that I had for the rest of my life.

I want to go home! I miss my BF incredibly, even though he's here as much as is possible with the little man and work. He was been awesome, always the voice of optimism, always strong for my family and me. He even talked my mom down from a nervous fit as I was having a picc line inserted. He's amazing. Nothing could make me want to marry this man more that the last eleven days. He's been my rock, my comfort, my reason, and so much more. I love him so dearly…perhaps it's the only truly good thing to come out of this shitty situation; I no longer have a shadow out a doubt that this man will stand by me through fire and ice. Marriage no marriage – kids or none of our own- I just want him to be my partner in navigating this life. I love him immeasurably. My only worry is that I'll die and leave him with that pain…but what is life if not pain.

5.06.2008

Anxiety

I've always been an anxious person. As a child I remember frequently worrying about whether or not my parents would ever be happy after their divorce. That one lingered for years and now that they're both in solid long term relationships, I don't have to worry. Social anxiety on the other hand has been omnipresent throughout my life. As a little kid I never had more than two or three friends, a trend that continued until I was a teenager. Even then I was the reserved one. I would never start a conversation with a stranger. I've always been terrible at making friends and was lucky enough in my teen years to become friends with two amazing, outgoing, far from socially retarded young women who like me so much that they made the plans, the friends, it was great. When distance came between the three of us, through various uncontrollable life changes, I found myself once again with someone far more socially proficient than I, my boyfriend. Colin was the life of every party. All of our friends called him to see what was going on that day. When we lived together, our house was the epicenter of all things social in our lives. Even after we split up and I moved out, we still remained friends and I still had a constant source of socialization at hand. Then he died. It hit me hard...it still hits me hard. I miss his friendship, I miss his laugh. More than anything we were best friends and though I don't feel that I lost the love of my life, I lost one of my best friends ever.

So Colin is dead. Allie moved to Boston for her undergrad and is now in NYC for her masters. Carly up and left for Austin one day; we still talk and when we do it's like old times, but she's just not here. Then there's Brooke. We fell out of touch after high school; different crowds, her boyfriend hated me, I was too wrapped up in Colin, and of course the personal shit that stays off the blog...My point being that after Colin died my social life collapsed. Part of it was my inability to grieve the way my friends were, the fundamental changes that his death made on my life, but the other half was simply my social anxiety.

After he died I plunged myself into schoolwork. I was working full-time and carrying 15 credit hours. I left myself little time to breathe, let alone grieve with my friends...socialize. And it makes me feel horrible, but with every passing day that I didn't call it just got harder. I felt like an outsider for the first time...Without any of my anchors I just drifted.

For a while I sporadically hung out with my friends on the weekends. Then I moved in with the BF in Lansdale, far to far for a quick drop in, and it became much easier to allow more and more time to lapse...making it harder and harder to pick the phone back up.

Being sick just makes it that much easier to not socialize...if you can't get up the energy to get off the couch; if you've got a mild migraine; if your just plain old depressed, it's easy to just stay home with your sweetheart.

So I graduate in three weeks. I've been done with school now for two months. What do I do with my days? Nada. I laze about. Watch TV. Surf the internet. Am totally unproductive. I have time now to go out, to do things, but I find that I'm depressed, fatigued, and anxious about just leaving the house. I need to get past this. I need a shrink, I think. I've just been out of the social scene for so long that I don't know how to re-establish friendships, to exist outside of school. We've started getting together with a group of friends and playing Dungeons & Dragons on Wednesday nights...it's geeky as all hell, but it's something to do with other people...it's a step in the right direction I guess.

We'll see...

5.05.2008

Parties, Babies, Vacations, Oh My!

Wow, it's been a while.

Lots of developments missed...I haven't been feeling very motivated to do anything for the last couple of months.

I had to end my student teaching in early March. I had a couple days there where I couldn't walk and it just wasn't possible for me to come in under their maximum number of allowable absences. So I won't be getting certified. So I can't teach in public schools, or anywhere else that requires it, but I'll still have a B.S.Ed. in Secondary Education, so I can get a private school or tutoring job. Right now I'm applying for online teaching positions. It sounds like the perfect job for me; I wouldn't need certification, I could work from home, the little man could stay home from daycare with me two days a week, which would save us tons of cash and be really nice for both of us. We pulled him out of daycare last week, before our nice little tropical vacation.

Yes, I actually left the country for the first time. We went to a nice all inclusive in the Dominican Republic. Lots of rum, lots of food, great weather. It was really nice and by the end of our eight-day stay, I was totally longing for Philadelphia International again. I missed my city.

It was the little man's third birthday right before we left. We had a very fun Spongebob Squarepants birthday party at a nearby park with my parents, the little man's grandma, my step-mom (now five months pregnant! more on that later), my brother, his girlfriend, assorted step-siblings...It was really fun. Then he spent a couple days with his mom and had a nice little vacation of his own staying with BF's mom while we were away. He even got a brand new big wheel, which he hasn't stopped talking about.

So yeah, after twenty years of just having one brother, I'm getting a new baby brother or sister in September. It's pretty amazing. The good kind of amazing. Little weird too. My dad's getting very close to fifty, though my step-mom is only in her mid thirties. It's going to make our already-huge family even more massive. There will be seven kids between them! and we're not even Catholic! :) They bought a great new house with a ton more space than they've got now (my step-mom and her kids have been in a 3 br tiny townhouse since her divorce and that's where they're living now; too many people, too little space). So they're moving in soon and all is looking up on that front. I can't wait to have a new baby around and we're all really hoping for a little girl.

So things are good on the whole. I'm graduating on the 22nd, my mom's throwing me a big graduation celebration the following weekend, I have my first job interview for a real online teaching job on the 20th. So it should be an exciting month. Then next month I'm going to go see both Ani DiFranco and Pearl Jam, my two absolute favorite artists. So yeah, lots going on.

Oh and I scored in the top 15% of all time on my Praxis exams that test social studies subject knowledge and I was accepted to UConn's online master's degree program. So besides my health being total shit right now, which is another post altogether, life is very very good.