Today Kicked My Ass. Of course so did yesterday. In fact yesterday was downright disheartening. BF and I took a trip to Home Depot to buy my dad's Father's Day gift and after less than 15 minutes in the store I was exhausted. I got a drink and had to wait on a pile of dry wall outside for BF to bring the car around because I couldn't walk to the car. Then we went to Target...that sucked as well. I had to find places to sit down like three times during our 20 minutes excursion for some basic Target crap. I was beat by the time we got home and pretty much vegged out on the couch for the rest of the day. The little man was a nice pick-me-up when his mom dropped him off; he always lifts my spirits, especially when he comes home on Saturday. He comes in and snuggles and tells me how he's going to make me feel better with hugs and kisses, which of course makes me feel much better, even if it's just emotionally.
But despite feeling like crap, I really wanted to make this Father's Day special for BF. First off, he's an awesome dad. I wish everyone got to see the cut away intimate view that I get to see of him and the little man together. The little man loves his dad soooo much and it's not just because he's his spawn, BF adores that little boy and he devotes himself to him as much as he possibly could. He's also an exceptional boyfriend, friend, lover, partner, and person. So I thought he deserved a special day.
I woke up early, before either of the guys were up; glanced around the kitchen and found that the cupboards were bare, so I went to the grocery store and picked up a bunch of breakfast stuff. I got home at about quarter to ten and woke The little man up to have him decorate the envelope of the Father's Day card I'd picked up for him. He drew on it a bit and helped me write "Daddy" on the front, but he was anxious to go wake his dad up and give it to him. So I grabbed a plate, a couple of crumb doughnuts, and a big glass of BF's favorite orange juice and lead the little guy in to wake up his dad.
I had already given him my gift; a coupon (they don't make gift certificates) for him to design and order a pair or shoes that he's been eying for months now - he really liked it; I was thrilled. Last week I had also spent a good deal of time putting together a present for The little man to give his dad; I took all of the great pictures that I had of The little man and of us with The little man and put together a calendar so that BF will always have pictures of The little man for his desk at work - the kid's too cute not to show off, but BF is a very private person when it comes to our home life and he never brings in pictures. So The little man brought his dad the calendar and they sat in bed and cuddled and ate doughnuts and were so freakin' cute. While they did that, I whipped up some pancakes and bacon. I had bought his favorite thick-cut bacon and some real organic maple syrup. After the boys had cuddled for a bit, BF and I ate our pancakes and the little man had a yogurt tube and half a slice of bacon - a stretch for him as he usually wouldn't touch the bacon.
BF seemed blown away that I'd done so much, especially being in the physical condition that I am and I was really proud to have been able to make his morning special and feel productive for the first time in weeks. After breakfast we all hung out on the couch, cuddled and chatted, while BF checked out the websites for creating his new shoes. The little man took off all of his clothes after using the potty totally unprompted (Score!) and sat on my lap wrapped up in his favorite blue fuzzy blanket. I love Sunday mornings; we all just get to be together and love each other and enjoy having nothing to do.
The little man went down for a nap at 12:30, but didn't actually go to sleep until 2:30, when BF informed me that while he was taking the ribs out to the grill (more on the ribs later) he had heard The little man babbling away in his room. Getting him to nap has always been my thing, I don't know how it became my thing, probably because I can be firm and still loving and I'm not quite as charm-permeable as BF can be; The little man doesn't try any cutesy crap when I come in and he knows he's supposed to be napping. So I went in and told him that he had to nap so that we could go over to my dad's that afternoon, which he was really looking forward to, I tucked him back into bed (he was upside down and he had his feet up on the bed rail). I told him that I'd be back in fifteen minutes and I expected him to be asleep and when I came back and peeked in ten minutes later he was fast asleep; he's an awesome kid, he's always amazing me.
So while he napped and BF finished off the amazing spare ribs that he grilled up to bring to the Father's Day barbecue, I took a nap myself as I could barely keep my eyes open. When BF woke me up at 4:30, we all got dressed and got all of our stuff together and drove over to my dad's new house for a nice big family barbecue. My step-mom's whole family was there and it was great. They're all really warm and welcoming and friendly and they just feel like family already, in fact they felt like family the first time I met them. It amazes me sometimes how much things have changed for the better in my life over the last two and a half years. Even with all of this health crap and losing my job, being unable to work, struggling through school, and trying to build a family while feeling like dirt, I still have such a wonderfully full life. The people that surround me are just so very loving and supportive that I can't even believe it sometimes.
We had a great time and ended up staying past the little man's bedtime - par for the course when hanging out with my dad, Amy and Tyler. It was really nice though, I'm getting to know my new step-siblings, whom I don't really like to refer to as step at all, I mean they call my dad "Dad", and Amy is like this instantly great friend and role model all in one...They don't feel like a step-family, they feel like a family. So we're getting closer and closer and it makes me incredibly happy to see us all coming together, to hear my dad saying things about considering himself a grandfather at this point, to hear The little man ask a million questions about when we'll be seeing Amy and if he can kiss her and play with her and he follows her around like a puppy...it's adorable and really heartwarming, especially if I end up not having children of my own, to know that my parents will still have a grandchild, a little man who adores them and trusts them and really loves them.
At the end of the night we came home and the little man went right to bed after reading his favorite book about Tonka trucks. I, of course, had pushed myself too hard and had a migraine and ached all over by the time I hit the couch. I took some painkillers, a fever reducer, muscle relaxers and an anti-anxiety pill and have been crashed out on the couch trying to feel like I'm not on fire (I've been running a fever on and off since I've been home from the hospital) and not in pain for about four hours now...I think it's just going to take sleep, but the migraine's gone, which is a good thing because if I fall asleep with one I'll probably wake up with it and I've got to be up and alert so that The little man and I can work on our numbers tomorrow morning!
So, goodnight all! Hopefully this was a nicer thing to read than the last two depressing-as-hell pieces. I'm trying to just take each day as it comes and make the most out of everything. I have an appointment with my pulmonary hypertension specialist on the 26th, and hopefully he'll be able to tell me more about where I am with this disease, where it's going, and what the plan is for keeping me around for another fifty happy years.
6.11.2008
A Singularly Remarkable Evening.
I just had a wonderful night. I really needed it.
I spent the evening with a very old friend, probably my oldest friend. We met the first day of junior high school. For some reason our english teacher had arranged the room so that there were two lines of desks facing each other on each side of the room, perpendicular to the chalkboard, and a fifth row of desks spanning the rear of the classroom, parallel to the chalkboard. This incredible young woman, who would help to shape much of who I have become, and I were the only two people assigned seats in the back row. Rather odd when I think back on it, but we immediately became friends. It was perfect timing for both of us really. I hadn't really had any friends in elementary school and her group of friends from elementary school had been very trendy, preppy, "pink" girls; she had found industrial rock and writers of substance over the summer and was finding she had less and less in common with them. I on the other hand had been groomed for just this kind of friendship; my parents both listened to good music, my dad having introduced my to alternative rock well before my age hit the double digits, and I was a loner-bookworm, ripe for the befriending.
We became inseparable nearly immediately. Weekends were our world as she lived more than twenty minutes drive from my house and my dad wasn't too keen on driving me there every day. I practically lived at their house from Friday afternoon until Sunday night for years. We just went together beautifully (and to the dismay of our parents we got into trouble beautifully as well). She was smart and funny and sarcastic. All of the qualities that I would someday find I loved in men, only she was my sister; we connected in a way that only young women are truly capable of connecting.
Tonight I discovered, as I've discovered with the two other women who I would be proud to call sisters, that time doesn't change a damn thing about that bond.
The end of high school is a perilous time for intelligent, adventurous, risk-taking young women and that was all too true for us. We did too many drugs, we screwed the wrong guys, we put ourselves in too many risky situations. I would like to say that we all remained unscathed by our risky pursuits, but we didn't. We've all come out of the other end strong, independent, well-defined women with the experiences that have hopefully taught us all the lessons that we'll need to stay the course and live wonderful lives, but that rabbit hole was deep for some of us. Especially the friend I spent this evening with.
I haven't seen her in about four years, but when I did, it was incredible; the years melted away and we fell once again into the familiar, honest, powerfully connected pattern that we'd been in before the various situations in our lives had pulled us apart. We hugged that bare, hold me I miss you hug when we saw each other and did the same twice more before the night was over. We talked as if the time had been seconds rather than years, recounting our own trials and tribulations and our hopes for the present and future. I got to know what her life is like now, she got to learn all about mine. We just talked and talked and talked. Had we not been wandering around the neighborhood, had she not had work the next morning and I a sweetheart to get home to, we would've talked all night. But this, I am confident, will be only the first of a very many conversations that will come in the near future. She shares my disdain for people without direction and ambition, she is working hard to secure her own future, and damn, she's the same girl that I fell in love with more than ten years ago - and that's excellent. With all that's been going wrong in my life lately it's impossible to put into words how wonderful this evening was. I'm so happy to have her back and I'm so glad that she came out of her own challenging rabbit hole an even better woman than when she went in.
I spent the evening with a very old friend, probably my oldest friend. We met the first day of junior high school. For some reason our english teacher had arranged the room so that there were two lines of desks facing each other on each side of the room, perpendicular to the chalkboard, and a fifth row of desks spanning the rear of the classroom, parallel to the chalkboard. This incredible young woman, who would help to shape much of who I have become, and I were the only two people assigned seats in the back row. Rather odd when I think back on it, but we immediately became friends. It was perfect timing for both of us really. I hadn't really had any friends in elementary school and her group of friends from elementary school had been very trendy, preppy, "pink" girls; she had found industrial rock and writers of substance over the summer and was finding she had less and less in common with them. I on the other hand had been groomed for just this kind of friendship; my parents both listened to good music, my dad having introduced my to alternative rock well before my age hit the double digits, and I was a loner-bookworm, ripe for the befriending.
We became inseparable nearly immediately. Weekends were our world as she lived more than twenty minutes drive from my house and my dad wasn't too keen on driving me there every day. I practically lived at their house from Friday afternoon until Sunday night for years. We just went together beautifully (and to the dismay of our parents we got into trouble beautifully as well). She was smart and funny and sarcastic. All of the qualities that I would someday find I loved in men, only she was my sister; we connected in a way that only young women are truly capable of connecting.
Tonight I discovered, as I've discovered with the two other women who I would be proud to call sisters, that time doesn't change a damn thing about that bond.
The end of high school is a perilous time for intelligent, adventurous, risk-taking young women and that was all too true for us. We did too many drugs, we screwed the wrong guys, we put ourselves in too many risky situations. I would like to say that we all remained unscathed by our risky pursuits, but we didn't. We've all come out of the other end strong, independent, well-defined women with the experiences that have hopefully taught us all the lessons that we'll need to stay the course and live wonderful lives, but that rabbit hole was deep for some of us. Especially the friend I spent this evening with.
I haven't seen her in about four years, but when I did, it was incredible; the years melted away and we fell once again into the familiar, honest, powerfully connected pattern that we'd been in before the various situations in our lives had pulled us apart. We hugged that bare, hold me I miss you hug when we saw each other and did the same twice more before the night was over. We talked as if the time had been seconds rather than years, recounting our own trials and tribulations and our hopes for the present and future. I got to know what her life is like now, she got to learn all about mine. We just talked and talked and talked. Had we not been wandering around the neighborhood, had she not had work the next morning and I a sweetheart to get home to, we would've talked all night. But this, I am confident, will be only the first of a very many conversations that will come in the near future. She shares my disdain for people without direction and ambition, she is working hard to secure her own future, and damn, she's the same girl that I fell in love with more than ten years ago - and that's excellent. With all that's been going wrong in my life lately it's impossible to put into words how wonderful this evening was. I'm so happy to have her back and I'm so glad that she came out of her own challenging rabbit hole an even better woman than when she went in.
6.07.2008
I Like To Be Here When I Can...
So I'm home. For some reason I always expect things to be different when I leave the hospital than when I went in. Never the case. With the exception of Oxycontin to control the pain in my chest and Adavant to stifle the crying jags being home is only slightly less depressing than being in the hospital. Here I'm not tethered to an IV pole 24-7 or forced to lay in a damp bed as I sweat through fevers and watch endless episodes of Lost. I get to sit on the couch, accompanied by my ever-faithful little Penny during the day and my sweet sweet man at night. I get to sleep in my own bed and turn the air conditioning up high enough that not even a stupid fever (which I'm still running) could make me sweat. I have my satellite dish back rather than the 15 cable channels (9 of which were either news or sports) that I was being charged $6 to enjoy. So yes, home is a fabulous step up.
But I still feel like shit and there isn't a damn thing that I can do about that except continue chewing down those mind-altering substances and sitting...just sitting. Getting to the door of my apartment is like a quarter mile hike. I took a shower last night (the first one I've been allowed in way too long - woohoo!) and when I got out I had to lean against door jambs until I could just plop my ass on the couch and try to get my head to stop swimming. Besides being drugged and exhausted (well probably in large part because I'm drugged an exhausted, I've been on the verge of tears since I got home. Everything makes me weep. The beautiful flowers that surround me, sent by caring friends and relatives. My boyfriend's head on my shoulder as we watch Jeopardy! And of course there was the ultimate crying jag once I got to bed last night. He just held me and tried to calm me and let me cry it all out. Except it's not all out and I don't know how I'm ever going to get it all out. I ended up taking a whole adavant (half is usually my limit as they tend to make me stumble over things that aren't really there) just to stop thinking, because think is the enemy at this point.
I'm in limbo until we find out if these new drugs are going to work. I won't be getting any better, hopefully I won't be getting worse. I have no news on the jobs front and I just feel stagnant, useless. I feel like I've lost a huge chunk of myself. Death is always at the forefront of my mind. Like what do I have? 10 years? 15? 20? It's scary to think that the length of my life will now be dictated by how long the doctors can keep my meds working. And then there's the other elephant in the room...a baby. I've always been a mom-to-be. Anyone who knows me knows that. When presented with our beautiful little ray of joint-custody sunshine a year and a half ago, I jumped right in and fell in love immediately. And he is amazing and I don't want to belittle in anyway my feelings toward him. Having him reach out to hold my hand as I grasped at the pain in my heart or curl up on my lap and ask what every bruise on my arm was from, play with the oxygen cannula, and just hunker down and give me five hugs and five kisses, just to make me better - these are things that fill up my heart in a way that I never imagined, simply because you can't really imagine it until you really have it. He has a mom though and I can never be his mom, even if I can come close. She will always be the first one he runs to, the first one teachers defer to, and the first in his little heart, which I know is the way it absolutely should be. There's just a physical, aching maternal need that I feel to have a baby of my own. To take the test; to excitedly tell him and my parents the news; to watch my belly plump as a little part of us becomes a whole new person inside of me; to see him/her on a sonogram; to tell people that they really can't touch my belly; to see that little scrunched red newborn face for the first time and know that this little person will have an unbreakable bond with me for the rest of my life. To be "Mom". I really don't know how to deal with losing that. It feels like losing an arm. It feels like I've been robbed of this sacred part of womanhood and god dammit it's unfair, it sucks, it's just not right.
I keep thinking "why me" and I hate that too. I've worked for the past five years (since my pulmonary embolism and last hospital stint) to eliminate that damn little self-pitying phrase from my mental vocabulary. Things happen because they happen. Lousy genes, birth control, hormones in beef, drugs I did in my teens, all of these could or could not be contributors. One cannot deny the existence of a supreme deity that is directly involved in the lives of man and then ask why such a being would do this to them. So I feel like an asshole for pitying myself. I feel helpless to stop these feelings though and I absolutely despise being depressed (not that I think anyone out there enjoys it. I cry and stop and cry harder and try to relax. I take comfort in what I have. Being in love. Being loved. Having completed a Bachelor's degree. When the sun is out things are a bit less depressing, but I still can't help but weep at just about anything.
Well hopefully I can just get through this weekend, comfortably numb and distracted enough to not cry as I help my six-months pregnant step-mom unpack dishes at their new house. Monday I can call my shink and get in there asap and I can call my doctor and get them to give me a portable oxygen tank so that I can actually move myself and things without nearly passing out.
Ugh. Enough bitching for today. I hate bitching. I just wanted a smooth ride for a bit and it seems that a hurricane has blown in early…
But I still feel like shit and there isn't a damn thing that I can do about that except continue chewing down those mind-altering substances and sitting...just sitting. Getting to the door of my apartment is like a quarter mile hike. I took a shower last night (the first one I've been allowed in way too long - woohoo!) and when I got out I had to lean against door jambs until I could just plop my ass on the couch and try to get my head to stop swimming. Besides being drugged and exhausted (well probably in large part because I'm drugged an exhausted, I've been on the verge of tears since I got home. Everything makes me weep. The beautiful flowers that surround me, sent by caring friends and relatives. My boyfriend's head on my shoulder as we watch Jeopardy! And of course there was the ultimate crying jag once I got to bed last night. He just held me and tried to calm me and let me cry it all out. Except it's not all out and I don't know how I'm ever going to get it all out. I ended up taking a whole adavant (half is usually my limit as they tend to make me stumble over things that aren't really there) just to stop thinking, because think is the enemy at this point.
I'm in limbo until we find out if these new drugs are going to work. I won't be getting any better, hopefully I won't be getting worse. I have no news on the jobs front and I just feel stagnant, useless. I feel like I've lost a huge chunk of myself. Death is always at the forefront of my mind. Like what do I have? 10 years? 15? 20? It's scary to think that the length of my life will now be dictated by how long the doctors can keep my meds working. And then there's the other elephant in the room...a baby. I've always been a mom-to-be. Anyone who knows me knows that. When presented with our beautiful little ray of joint-custody sunshine a year and a half ago, I jumped right in and fell in love immediately. And he is amazing and I don't want to belittle in anyway my feelings toward him. Having him reach out to hold my hand as I grasped at the pain in my heart or curl up on my lap and ask what every bruise on my arm was from, play with the oxygen cannula, and just hunker down and give me five hugs and five kisses, just to make me better - these are things that fill up my heart in a way that I never imagined, simply because you can't really imagine it until you really have it. He has a mom though and I can never be his mom, even if I can come close. She will always be the first one he runs to, the first one teachers defer to, and the first in his little heart, which I know is the way it absolutely should be. There's just a physical, aching maternal need that I feel to have a baby of my own. To take the test; to excitedly tell him and my parents the news; to watch my belly plump as a little part of us becomes a whole new person inside of me; to see him/her on a sonogram; to tell people that they really can't touch my belly; to see that little scrunched red newborn face for the first time and know that this little person will have an unbreakable bond with me for the rest of my life. To be "Mom". I really don't know how to deal with losing that. It feels like losing an arm. It feels like I've been robbed of this sacred part of womanhood and god dammit it's unfair, it sucks, it's just not right.
I keep thinking "why me" and I hate that too. I've worked for the past five years (since my pulmonary embolism and last hospital stint) to eliminate that damn little self-pitying phrase from my mental vocabulary. Things happen because they happen. Lousy genes, birth control, hormones in beef, drugs I did in my teens, all of these could or could not be contributors. One cannot deny the existence of a supreme deity that is directly involved in the lives of man and then ask why such a being would do this to them. So I feel like an asshole for pitying myself. I feel helpless to stop these feelings though and I absolutely despise being depressed (not that I think anyone out there enjoys it. I cry and stop and cry harder and try to relax. I take comfort in what I have. Being in love. Being loved. Having completed a Bachelor's degree. When the sun is out things are a bit less depressing, but I still can't help but weep at just about anything.
Well hopefully I can just get through this weekend, comfortably numb and distracted enough to not cry as I help my six-months pregnant step-mom unpack dishes at their new house. Monday I can call my shink and get in there asap and I can call my doctor and get them to give me a portable oxygen tank so that I can actually move myself and things without nearly passing out.
Ugh. Enough bitching for today. I hate bitching. I just wanted a smooth ride for a bit and it seems that a hurricane has blown in early…
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.
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 stunted 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...
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.
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.
1.08.2008
I'm not one for praying, but...
After discussing my educational plans with BF last semester, we agreed that it was probably the best idea for me to hold off on grad school for a year or so after I graduate in May to let me get my feet wet as a teacher and see if it's really what I want to spend my life doing (or at least this part of my life; I definitely plan to have more than one career). I had found a very highly reputed school in New England that had a program for Education of the Gifted and Talented. The program sounded great, two online classes for four semesters and two two-week summer sessions on their campus. But, I agreed to wait, or to hold off on making any real decision.
Well this week I decided to make a decision. I emailed four of my professors requesting recommendation letters, I faxed my transcripts, and I went ahead and took the plunge, filing my application. Of course I told BF what I was doing first, not really looking for advice this time as letting him know what I was definitely doingl. I'm not often so assertive; it's rather empowering. He stil doesn't think it's a great idea, but he can see where I'm coming from. There really was no time for debate, the deadline for application is three weeks away.
I've already received one of my recommendation letters. My professor, an alumnus of the university I'm applying to, sent me a copy of the letter containing the most glowing praise I've ever read. It was almost embarrassing. If the rest are even close to that I think I've got a pretty good chance at acceptance. I'm really excited for the first time in a great while about my education. I was in a gifted program in elementary school and my times there were some of the best of my school days. I would love to be involved in one of those programs.
I'm also nervous about my education for the first time. When I was a senior in high school I really didn't think much about college; I thought my mediocre grades would keep me out of any good school, so I pretty much accepted community college as my only option and they accept everyone, so there were no nerves there. I did apply to one good school, only because they were local and they had a free application if you filed online. I was shocked when they accepted me; I had graduated with a 2.1 GPA. I can only assume that my high SAT scores (30 points short of a perfect verbal and an above average math) were my ticket in. But once I looked at how much money my parents made and how much money the school cost and how much debt I was going to be in after graduation, I politely declined their invitation and enrolled in community college at about a tenth of the price, which the state paid for in full (sometimes it pays to be poor). After I earned my A.S, I transferred to a bigger, better school downtown under an agreement that they had with my community college. All I had to do was keep my grades over 3.0 and they would accept all of my courses as fulfillment of their freshman/sophomore curriculum.
So now I'm in a wholly new place, I actually want this and it's not guaranteed. There are no other programs like it in the country. No backup school. If they don't accept me, I'll just teach high school history as I planned, get married as planned, and reapply once I've got some employment references. And cry of course. I've never won anything, but it's generally because I haven't tried. As come easy. Professors like me. But this is a whole new realm and hopefully a whole new journey.
Well this week I decided to make a decision. I emailed four of my professors requesting recommendation letters, I faxed my transcripts, and I went ahead and took the plunge, filing my application. Of course I told BF what I was doing first, not really looking for advice this time as letting him know what I was definitely doingl. I'm not often so assertive; it's rather empowering. He stil doesn't think it's a great idea, but he can see where I'm coming from. There really was no time for debate, the deadline for application is three weeks away.
I've already received one of my recommendation letters. My professor, an alumnus of the university I'm applying to, sent me a copy of the letter containing the most glowing praise I've ever read. It was almost embarrassing. If the rest are even close to that I think I've got a pretty good chance at acceptance. I'm really excited for the first time in a great while about my education. I was in a gifted program in elementary school and my times there were some of the best of my school days. I would love to be involved in one of those programs.
I'm also nervous about my education for the first time. When I was a senior in high school I really didn't think much about college; I thought my mediocre grades would keep me out of any good school, so I pretty much accepted community college as my only option and they accept everyone, so there were no nerves there. I did apply to one good school, only because they were local and they had a free application if you filed online. I was shocked when they accepted me; I had graduated with a 2.1 GPA. I can only assume that my high SAT scores (30 points short of a perfect verbal and an above average math) were my ticket in. But once I looked at how much money my parents made and how much money the school cost and how much debt I was going to be in after graduation, I politely declined their invitation and enrolled in community college at about a tenth of the price, which the state paid for in full (sometimes it pays to be poor). After I earned my A.S, I transferred to a bigger, better school downtown under an agreement that they had with my community college. All I had to do was keep my grades over 3.0 and they would accept all of my courses as fulfillment of their freshman/sophomore curriculum.
So now I'm in a wholly new place, I actually want this and it's not guaranteed. There are no other programs like it in the country. No backup school. If they don't accept me, I'll just teach high school history as I planned, get married as planned, and reapply once I've got some employment references. And cry of course. I've never won anything, but it's generally because I haven't tried. As come easy. Professors like me. But this is a whole new realm and hopefully a whole new journey.
1.07.2008
I do not like them Sam I am!
I'm just sitting here watching tv with our sweet little man who has the incredibly annoying habit of asking "What's that doin'?" about whatever happens to be on the screen every thirty seconds or so. Every week his personality changes; the week before Christmas I changed his diaper and he screamed the whole time that he wanted his dad to do it. That was also the phase of his total refusal to hug, kiss, or tell me he loved me. This week and last he's a little cuddle bug. He climbs up on the couch and fits his little body against my side and cuddles while we watch TV or read Dr. Seuss - "Do you like green eggs and ham?" - and then there's the wonderful fact that I can actually make him smile again, rather than scrunching up his face and giving me "But I don't waaaant to" or "But I have to" for the sixteenth time that hour.
He probably doesn't remember a time when his parents were together, after all, they were only really together for the first ten months or so of his life. By his first birthday, things were falling apart pretty rapidly; a month later they made the decision to separate. So he won't ever have memories of them together and when he actually starts forming memories, he'll feel like I've always been here. My training in educational and child psychology assure me of this. They also assure me that these mood changes are normal phases for a toddler to go through as they root around for the balance between independence and attachment and discover that they can manipulate their environments to suit their will. Hell, even his mother has remarked at what a defiant little hellion he's been.
But these phases are hard as hell to take as a step-parent. I thought, coming in to this situation, that the actual activities of parenting: diapers, nap time, screaming, time outs. keeping him from harming himself and everything else that a mom gets to deal with, would be the tough part. That stuff was cake compared to having a normally sweet and loving two year old look you in the face and tell you he doesn't love you. Talk about tearing my heart out.
The fact that I am not really his parent and that he does not just automatically love me is always hovering just on the edge of my consciousness, ready to pop in and give a villainous cackle. And then I get frustrated with myself; I know this child loves me, I know he loves to spend time with me, I know that he comes to me for comfort and for fun, but oooh two year olds can be cruel.
Right now things are wonderful and as long as I remind myself that it could be far worse, I could be trying to get a ten year old to love me, I do pretty well. It's even hard not to think of him as my own, as I would be delighted to be "Mom" rather than "my Rachel," but he adores his mom and I wouldn't have it any other way. I just hope that I continue to be his "Rachel" as he grows up (which seems to happen in leaps on a daily basis).
He probably doesn't remember a time when his parents were together, after all, they were only really together for the first ten months or so of his life. By his first birthday, things were falling apart pretty rapidly; a month later they made the decision to separate. So he won't ever have memories of them together and when he actually starts forming memories, he'll feel like I've always been here. My training in educational and child psychology assure me of this. They also assure me that these mood changes are normal phases for a toddler to go through as they root around for the balance between independence and attachment and discover that they can manipulate their environments to suit their will. Hell, even his mother has remarked at what a defiant little hellion he's been.
But these phases are hard as hell to take as a step-parent. I thought, coming in to this situation, that the actual activities of parenting: diapers, nap time, screaming, time outs. keeping him from harming himself and everything else that a mom gets to deal with, would be the tough part. That stuff was cake compared to having a normally sweet and loving two year old look you in the face and tell you he doesn't love you. Talk about tearing my heart out.
The fact that I am not really his parent and that he does not just automatically love me is always hovering just on the edge of my consciousness, ready to pop in and give a villainous cackle. And then I get frustrated with myself; I know this child loves me, I know he loves to spend time with me, I know that he comes to me for comfort and for fun, but oooh two year olds can be cruel.
Right now things are wonderful and as long as I remind myself that it could be far worse, I could be trying to get a ten year old to love me, I do pretty well. It's even hard not to think of him as my own, as I would be delighted to be "Mom" rather than "my Rachel," but he adores his mom and I wouldn't have it any other way. I just hope that I continue to be his "Rachel" as he grows up (which seems to happen in leaps on a daily basis).
12.20.2007
Merry Christmas!
So if I thought that Christmas was complicated with divorced parents of my own I was a fool! This year I've got two new families: BF, the little man, and BF's mom and my dad's newly acquired family. While I adore having all of these new people in my life they do tend to complicate things.
When my brother and I were younger Christmas plans were pretty easy. My dad has a very small family which he doesn't really interact with; we used to have Christmas Eve with my dad and his mom at his house and then he and my brother would go to Christmas Eve church services and I would go to my best friend's family Christmas Eve party (being the black sheep that I am) and hang out. My dad and brother would join the party after church, we'd go home at 1:00 or so, sleep, wake-up the next morning and open presents and then go to my mom's house. There we'd do the gift exchange thing again with her and her boyfriend (he's been around for almost ten years now - I like him and he's never tried to be my dad - they're never getting married). After a couple hours of hanging around the house, getting some brunch, relaxing a bit and playing with new presents, we'd go to my mom's big giant family Christmas gathering. My mom's one of five who all felt the need to be fruitful and multiply; my grandmother has twelve grandchildren.
This year things are getting more complicated. Now my dad actually has family; my brother and I have SOs; and my SO has a son. So we're not doing Christmas day with either of my parents. We're going to spend Christmas Eve afternoon/evening with my dad, my brother and my new stepfamily, then my brother is coming to my mom's with us when my dad and his new clan go to church at 6:30. We're going to do presents and a late dinner there and then BF's ex is going to drop off the little man with us after he spends the day with her and her family across the river, probably around 11:00 or so; last year it was midnight. Christmas morning, BF's mom and ex-wife are coming to our house to watch the little man open presents and exchange gifts with us (the ex relationship is coming along beautifully, I'm actually okay with her being there and she actually invited us to spend Christmas Eve at her family's gathering). After that the ex is presumably leaving and we'll have lunch and hang out at our apartment with BF's mom for a while. After that it's off to Quakertown to my mom's family's gathering for the rest of the evening, hopefully BF's mom will come with us.
Busy two days and it made me cry more than once trying to figure out how it was going to work out, but now that it is, I'm pleased.
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This Christmas season has been awesome.
The little man was only 20 mos. old last Christmas and he didn't quite get the whole tree/santa/presents/Christmas thing, but this Christmas has been totally different. He went to see Santa at the mall and was totally excited about it, told him he wanted a fire truck and a video game, though he was too amazed to smile for the pictures, just stunned looking. He was thrilled when we put up our Christmas tree last Saturday night (it's fake and gorgeous; one of the best purchases I ever made). He helped put ornaments on and directed me about where to place them up high. It was adorable and such a joy. When I let him press the button to turn on the lights, he gasped as if it was the most wonderful thing ever.
BF and I have also been having a great time on our own. I've been pretty sick for more than a month, but the last two weeks have been much better. My semester at school is finally over so I've got more time to cuddle (passed everything, luckily). He also took this week off, so Monday and Tuesday we just hung around the house and enjoyed the time alone together and Wednesday morning we drove to Washington D.C., where we are now.
We've been having a blast. Our hotel is all retro fabulous and it's really just nice to be away. We got here too late yesterday to do anything; apparently there isn't anything to see in this town after 5:30 - the Smithsonian museums close, the national buildings all close, even most of the chain food places close at 7:00. So we went out for dinner and came back to the room with ice cream and snacks, climbed into be and watched the Discovery channel. Mythbusters rocks.
Today was a bit more productive. We got out early planning on hitting the museums, but we found out they only give out a limited number of tickets for tours of the Capitol building, so we headed over there. We got there just as the 12:15 tour was leaving, but nabbed tickets for the next tour and headed across the street to the House of Reps building for food. After twenty minutes of going from one closed food shop to another in that building, we were directed to a connecting building. We got to the cafeteria there just as everyone in the two buildings was taking their lunch break; it was packed. We didn't get to pay for our lunch until the tour that we had tickets for was beginning, so no Capitol tour. We walked to the Air and Space museum instead and had a good time there. The American History Museum, which is right up my history-geek alley, is closed for renovations. We knew this before we came, so I was prepared to not get to see it, but the Air & Space museum had an exhibit that was a mini-American History museum; it was awesome. I got to see so many incredible artifacts. After Air & Space we went over to the Natural History Museum, picked up some cool Christmas gifts and spent an hour browsing the Gems & Minerals exhibit, which was very cool, before the museum people kicked us out and we hiked our badly aching feet back to the Metro and then back to the hotel.
So here I am, sitting, watching crappy sitcoms, while my dear love is out at Whole Foods getting us some sandwiches for dinner. The one negative part about having lupus and traveling to a place where you're expected to walk a half mile here and a half mile there and up and down Capitol Hill and around museums and on tours for hours at a time is that it hurts like a motherfucker. Of course it hurt an hour after we left the hotel and only got worse throughout the day. Walking from the metro station to the Capitol Building was exhausting - about a third of a mile up-hill. The worst part is that sitting down doesn't do a damn thing to make things better or stave off the inevitable limping. I could hardly get back to the hotel after being on my feet for six hours and now I can hobble, barely, but I'm basically stuck on the couch for the rest of the night, hoping that I can walk tomorrow and do it all over again. I could skip this kind of thing. I could do two hours and then back to the hotel for a rest, but as I said, everything closes after sundown. I refuse to see half of a museum. I refuse to listen to my body and stay home. So I suck it up and hobble my ass around and I'm glad I do, it just hurts, but that's my hand to play.
Okay, well that was extremely long and I have to go eat the sandwich my wonderful man has procured for me.
When my brother and I were younger Christmas plans were pretty easy. My dad has a very small family which he doesn't really interact with; we used to have Christmas Eve with my dad and his mom at his house and then he and my brother would go to Christmas Eve church services and I would go to my best friend's family Christmas Eve party (being the black sheep that I am) and hang out. My dad and brother would join the party after church, we'd go home at 1:00 or so, sleep, wake-up the next morning and open presents and then go to my mom's house. There we'd do the gift exchange thing again with her and her boyfriend (he's been around for almost ten years now - I like him and he's never tried to be my dad - they're never getting married). After a couple hours of hanging around the house, getting some brunch, relaxing a bit and playing with new presents, we'd go to my mom's big giant family Christmas gathering. My mom's one of five who all felt the need to be fruitful and multiply; my grandmother has twelve grandchildren.
This year things are getting more complicated. Now my dad actually has family; my brother and I have SOs; and my SO has a son. So we're not doing Christmas day with either of my parents. We're going to spend Christmas Eve afternoon/evening with my dad, my brother and my new stepfamily, then my brother is coming to my mom's with us when my dad and his new clan go to church at 6:30. We're going to do presents and a late dinner there and then BF's ex is going to drop off the little man with us after he spends the day with her and her family across the river, probably around 11:00 or so; last year it was midnight. Christmas morning, BF's mom and ex-wife are coming to our house to watch the little man open presents and exchange gifts with us (the ex relationship is coming along beautifully, I'm actually okay with her being there and she actually invited us to spend Christmas Eve at her family's gathering). After that the ex is presumably leaving and we'll have lunch and hang out at our apartment with BF's mom for a while. After that it's off to Quakertown to my mom's family's gathering for the rest of the evening, hopefully BF's mom will come with us.
Busy two days and it made me cry more than once trying to figure out how it was going to work out, but now that it is, I'm pleased.
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This Christmas season has been awesome.
The little man was only 20 mos. old last Christmas and he didn't quite get the whole tree/santa/presents/Christmas thing, but this Christmas has been totally different. He went to see Santa at the mall and was totally excited about it, told him he wanted a fire truck and a video game, though he was too amazed to smile for the pictures, just stunned looking. He was thrilled when we put up our Christmas tree last Saturday night (it's fake and gorgeous; one of the best purchases I ever made). He helped put ornaments on and directed me about where to place them up high. It was adorable and such a joy. When I let him press the button to turn on the lights, he gasped as if it was the most wonderful thing ever.
BF and I have also been having a great time on our own. I've been pretty sick for more than a month, but the last two weeks have been much better. My semester at school is finally over so I've got more time to cuddle (passed everything, luckily). He also took this week off, so Monday and Tuesday we just hung around the house and enjoyed the time alone together and Wednesday morning we drove to Washington D.C., where we are now.
We've been having a blast. Our hotel is all retro fabulous and it's really just nice to be away. We got here too late yesterday to do anything; apparently there isn't anything to see in this town after 5:30 - the Smithsonian museums close, the national buildings all close, even most of the chain food places close at 7:00. So we went out for dinner and came back to the room with ice cream and snacks, climbed into be and watched the Discovery channel. Mythbusters rocks.
Today was a bit more productive. We got out early planning on hitting the museums, but we found out they only give out a limited number of tickets for tours of the Capitol building, so we headed over there. We got there just as the 12:15 tour was leaving, but nabbed tickets for the next tour and headed across the street to the House of Reps building for food. After twenty minutes of going from one closed food shop to another in that building, we were directed to a connecting building. We got to the cafeteria there just as everyone in the two buildings was taking their lunch break; it was packed. We didn't get to pay for our lunch until the tour that we had tickets for was beginning, so no Capitol tour. We walked to the Air and Space museum instead and had a good time there. The American History Museum, which is right up my history-geek alley, is closed for renovations. We knew this before we came, so I was prepared to not get to see it, but the Air & Space museum had an exhibit that was a mini-American History museum; it was awesome. I got to see so many incredible artifacts. After Air & Space we went over to the Natural History Museum, picked up some cool Christmas gifts and spent an hour browsing the Gems & Minerals exhibit, which was very cool, before the museum people kicked us out and we hiked our badly aching feet back to the Metro and then back to the hotel.
So here I am, sitting, watching crappy sitcoms, while my dear love is out at Whole Foods getting us some sandwiches for dinner. The one negative part about having lupus and traveling to a place where you're expected to walk a half mile here and a half mile there and up and down Capitol Hill and around museums and on tours for hours at a time is that it hurts like a motherfucker. Of course it hurt an hour after we left the hotel and only got worse throughout the day. Walking from the metro station to the Capitol Building was exhausting - about a third of a mile up-hill. The worst part is that sitting down doesn't do a damn thing to make things better or stave off the inevitable limping. I could hardly get back to the hotel after being on my feet for six hours and now I can hobble, barely, but I'm basically stuck on the couch for the rest of the night, hoping that I can walk tomorrow and do it all over again. I could skip this kind of thing. I could do two hours and then back to the hotel for a rest, but as I said, everything closes after sundown. I refuse to see half of a museum. I refuse to listen to my body and stay home. So I suck it up and hobble my ass around and I'm glad I do, it just hurts, but that's my hand to play.
Okay, well that was extremely long and I have to go eat the sandwich my wonderful man has procured for me.
12.04.2007
My Poor Bronchioles!
I am seriously motherfucking ill. Excuse the language, but my chest feels like it has tiny daggers in it that go just a little bit deeper each time I breathe. This has been coming on for a month now but the doctor said "it's just a sinus infection, viral, nothing we can do about it but it will go away on its own." That was something like two weeks before Thanksgiving. So for the past month I've been feeling congested, achy, and generally just shitty. Then, yesterday the proverbial shit finally hit the fan. I woke up after three hours of sleep with sharp pain in my left lung. Went to the doctor, who promptly sent me to the ER. With a medical history containing the words "pulmonary embuli", that's doctor-speak for multiple blood clots in my lungs, pretty much any chest pain I get, from a pulled muscle to bronchitis, is treated as if it could be life threatening. A very nice way to get through triage fast; I didn't even see the waiting room.
So my wonderful BF brought me my (brand new) PowerBook (that I'm entirely in love with)and some school work. Then he whisked the little man off to spend the night at grandma's house and came back to sit and wait with me. My mom came too, she rocks and her skills as a nurse came in quite handy when they removed my IV, gauzed and taped it, and a minute later I was dripping blood all over myself and the floor. One of the wonderful side effects of taking blood thinners is that you never know whether or not you're going to bleed like a stuck pig. I get blood-work done routinely and there's never more than a drop or two on the gauze when I take it off, but Jesus Christ, this big fat gauze pad and the tape that was holding it in place were a lovely shade of deep red, soaked through.
But I'm getting ahead of myself. Something was obviously wrong. Beside the pain, which I'd reigned in with the help of my good friend Darvocet, my blood oxygenation level was below 90% (not good) and my heart rate was hovering around 130 beats per minute (also not good). So they drew what seemed like a gallon of blood to test the hell out of, gave me a nebulizer treatment, which never does a damn thing, gave me a chest x-ray, and followed that nice little dose of radiation with a massive dose courtesy of the CT scanner. The worst part was that I wasn't allowed to drink anything. I didn't give a shit about eating, but with my sinuses full of gunk, the constant mouth breathing left me feeling like my mouth was the Mojave. Their solution: ice chips. Now as any woman who's done the whole childbirth thing knows, ice chips suck. They are a poor substitute for actual hydration, which is what I was really craving. And the bag of saline that they were pumping into my veins didn't do the trick either. So it just sucked.
All of my labs came back normal. The chest x-ray and CT showed nothing. Diagnosis: Bronchitis with a secondary helping of pleurisy. Now bronchitis I can deal with, but pleurisy is one of those things that you'd wish on your worst enemy. From what I understand, the membrane surrounding your lungs has a gel-like substance between it and your lung tissue. Usually this is highly viscous and acts like a good lube when you breathe. Pleurisy is when that substance becomes sticky and creates lots of painful friction with each breath. Think about sex without lube. Not good. That's what this feels like with every breath.
So now, on the eve of finals, with my European history thesis still unwritten and much studying to do, I feel like shit. I did, however, get a paper revised while I sat waiting for my results, so there's a plus. I really must crack the doctors and nurses up in the ER though. I can rate my pain on a one to ten scale like a pro, I speak their language (bilateral PEs, lower left quadrant, palpate, acute pain, diffused throughout the lung), I can predict with pretty good accuracy what tests will be run, and generally know how to be a patient. Hell, I've had years of practice. But what they seem to like the most, and are the most surprised at, is my demeanor. I run down my medical history, my list of drugs, my symptoms, all of that, and all the while I'm friendly, smiling, helpful. It's something you just get used to after a while. It's like "Okay, I have chest pain, this is going to mean a 5 hour trip to the ER and there's no getting out of it, so I suck it up and deal." And I do. I see no reason to be uncooperative or unfriendly to the staff there, and I learned long ago that this is my hand to play, I can be miserable about it, or I can accept it with a smile. So that's what I do and let me tell you, it makes the whole experience far more bearable.
So my wonderful BF brought me my (brand new) PowerBook (that I'm entirely in love with)and some school work. Then he whisked the little man off to spend the night at grandma's house and came back to sit and wait with me. My mom came too, she rocks and her skills as a nurse came in quite handy when they removed my IV, gauzed and taped it, and a minute later I was dripping blood all over myself and the floor. One of the wonderful side effects of taking blood thinners is that you never know whether or not you're going to bleed like a stuck pig. I get blood-work done routinely and there's never more than a drop or two on the gauze when I take it off, but Jesus Christ, this big fat gauze pad and the tape that was holding it in place were a lovely shade of deep red, soaked through.
But I'm getting ahead of myself. Something was obviously wrong. Beside the pain, which I'd reigned in with the help of my good friend Darvocet, my blood oxygenation level was below 90% (not good) and my heart rate was hovering around 130 beats per minute (also not good). So they drew what seemed like a gallon of blood to test the hell out of, gave me a nebulizer treatment, which never does a damn thing, gave me a chest x-ray, and followed that nice little dose of radiation with a massive dose courtesy of the CT scanner. The worst part was that I wasn't allowed to drink anything. I didn't give a shit about eating, but with my sinuses full of gunk, the constant mouth breathing left me feeling like my mouth was the Mojave. Their solution: ice chips. Now as any woman who's done the whole childbirth thing knows, ice chips suck. They are a poor substitute for actual hydration, which is what I was really craving. And the bag of saline that they were pumping into my veins didn't do the trick either. So it just sucked.
All of my labs came back normal. The chest x-ray and CT showed nothing. Diagnosis: Bronchitis with a secondary helping of pleurisy. Now bronchitis I can deal with, but pleurisy is one of those things that you'd wish on your worst enemy. From what I understand, the membrane surrounding your lungs has a gel-like substance between it and your lung tissue. Usually this is highly viscous and acts like a good lube when you breathe. Pleurisy is when that substance becomes sticky and creates lots of painful friction with each breath. Think about sex without lube. Not good. That's what this feels like with every breath.
So now, on the eve of finals, with my European history thesis still unwritten and much studying to do, I feel like shit. I did, however, get a paper revised while I sat waiting for my results, so there's a plus. I really must crack the doctors and nurses up in the ER though. I can rate my pain on a one to ten scale like a pro, I speak their language (bilateral PEs, lower left quadrant, palpate, acute pain, diffused throughout the lung), I can predict with pretty good accuracy what tests will be run, and generally know how to be a patient. Hell, I've had years of practice. But what they seem to like the most, and are the most surprised at, is my demeanor. I run down my medical history, my list of drugs, my symptoms, all of that, and all the while I'm friendly, smiling, helpful. It's something you just get used to after a while. It's like "Okay, I have chest pain, this is going to mean a 5 hour trip to the ER and there's no getting out of it, so I suck it up and deal." And I do. I see no reason to be uncooperative or unfriendly to the staff there, and I learned long ago that this is my hand to play, I can be miserable about it, or I can accept it with a smile. So that's what I do and let me tell you, it makes the whole experience far more bearable.
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