Last night almost ended well. I told him that the decision to not get my pills was a dumb one, but that I'd been under pressure and hadn't had time to think it through. This turned into a second fight about how I fail to take responsibility when I screw up. We spent the rest of the night reading and went to sleep without another word.

We spent another half an hour arguing this afternoon and then ignored each other for a while. I just didn't have any more fight left. I suggested we go out and eat before his Xbox 360 session with his friends. He didn't have any objections, so we headed down to the local casual dining establishment and sat down.

We ordered, made small talk, went over plans for the upcoming holidays and a probable trip to Williamsburg, Va. next month, nothing especially deep or emotional. We never fight for long; for this one to last through to this afternoon made it a particularly long one. I apologized for screwing up yet another one of his birthdays (I don't have the greatest track record, but I always make up for it to some degree). He listened and it just got better.

I still stand by the fact that I don't have a lot of control over my life, but this is one thing I could've made happen right. And it sucks that his birthday being a success or failure is entirely my responsibility, while he shares the responsibility for mine with my family, but he doesn't have local family, I'm it. So this one's up to me and I've just got to suck that one up.

It's not the same with everything else we argue about. I still maintain that I can not be the primary person responsible for making sure the house is tidy and that there are clean dishes and laundry. I cannot control my illnesses and what's going to be a problem at any particular time. I cannot control the speed at which my doctors attend to their messages or whether their staffs and my insurance company work together for an outcome that is beneficial to me. But I do resolve to control what I can when I can and to stretch myself thin just to make him feel happy and appreciated because he is my best friend and the love of my life and because he does the same for me. Maybe not stretching himself thin, but it's as much his fault that he's not sick as it is my fault that I am.

We've still got a lot of bumps to get over and I'm not saying that from here on out it'll be any easier, but we've been through five years of hard times and we've stayed together through all of them and now we've got a great therapist and we're both ready and willing to work to make this better for both of us, to realize the future that we know we love each other hard enough to achieve.

So that's it, just figured I ought to give you all the rest of the story.


The Greatest Birthday Ever

I've been through a tiny bit of hell this month.

First, my Social Security benefits got cut in half because Pennsylvania stopped paying for my health insurance in June and they decided to take July, August, and September's premiums out of one check.  And let me remind you that I get less than nine hundred dollars to start with, so the remaining funds were meager, but still enough to pay my car insurance and student loans.  There were two real problems: BF's birthday would fall before I got my next check and I'm now tasked with taking LM to school (which, to be fair, I do entirely voluntarily).

Taking LM to school is something that I like to do.  It's a long ride and it's nice to have time to talk and tell jokes and just listen to him go on about whatever's on his six-year-old brain.  The one bad thing is that it costs me ten dollars a day to drive him back and forth to school and those days really add up in a month where I'm already on a super tight budget.  So I've had to borrow money from BF a couple times and he hasn't liked it at all, especially since I took advantage of a sale at JC Penney a few weeks ago and bought some winter clothes (because I've put on some weight since last year and nothing fits anymore).  The money, about $60, has become a really raw spot between the two of us and I don't understand why. He pays for lots of things in our life and I pay for what I can, but mostly I just pay my personal bills (about half of my income) and spend the rest of it on incidental things like dinner out for the two of us, clothes for LM, books, and other stuff for myself.  He's never made a big deal about how I don't fork over a certain amount of money to him each month before now, but apparently he's been stewing on it for a while.

Now, the other problem: BF has a totally different concept of what birthday's are all about than I do.  He sees it as the one special day in the year that's all about making him feel special.  I don't.  I see it as a nice excuse to spend some time with friends and family and all the gifts or dinners or whatever other perks there may be are nice plusses, but optional.

Another little bit of hell that's been going on is that I have a real problem getting through to my pulmonologist.  Her staff either lose my message, don't deliver my message, don't convey the seriousness or urgency of the message, don't call my insurance company about prior authorizations on the drugs they prescribe or pre-certifications for tests that the doctor orders, or just screw things up in one of several other ways.  This last time it was about my Oxycontin.  Now just a brief bit of background, I've been taking Oxycontin for 2.5 years now, before that it was darvocet, and before that it was ultracet.  I've been addicted to pain medication for about 7-8 years now and I go into withdrawal pretty quickly when I don't have it.  So I called my pulmonologist a few days before I was scheduled to run out of pills and left a message asking that she write me a new prescription for the drug (you can't get refills on narcotics in PA) and leave it at the front desk for me to pick up.  When I showed up at her office, which is an hour drive from my home, two days later, there was no prescription for me and the doctor was out of the office and on vacation from that day forward.  Fuck me! I asked if another doctor could write a prescription for at least enough pills to hold me over and the receptionist said that she would check, came back and told me that the nurse practitioner was going to write it.  So that's what happened.  Apparently, Nurse Practitioners can only write three days worth of a prescription, so she wrote me three prescriptions and told me that they would leave a message for my doctor to write a full prescription when she got back which would be on Halloween.

I couldn't make it downtown on Halloween because of all of the stuff I was doing with LM at school, but the next day, after picking the boy up from early dismissal, I set about to go down and pick it up.  At this point I had no pills left and had only taken half a dose that morning.  I had tried to call the doctor's office to make sure the prescription was there twice earlier in the day, but after 20+ minutes on hold had hung up and opted to call back later.  I called back when I was halfway there (I had had to stop by BF's work to borrow some money because I had neither gas nor money to pay for it).  I finally got through to the receptionist who told me that I should've called earlier to see if it was there and that she hadn't left the doctor a note when I had been in the office previously, that she had left it up to the Nurse Practitioner.  Not what she had said previously, but whatever I just wanted to know if my prescription was there or not before I got too far into the city.  After putting me on hold for what seemed like forever, she came back and told me that the doctor said I could pick up the prescription today.  I told her that that wasn't going to work for me because I was already out of pills and needed them that day.  She put me on hold again and when she came back she said that the doctor said I could come pick it up at four o'clock that day (it was just before two at the time).  I wanted to scream.  I had a kid in the car who hadn't had lunch and on his early dismissal day had already spent two hours in the car and now she was telling me that I could drive the 45 minutes back home only to turn around 20 minutes later and return to Center City.  I also had made an appointment for LM to get his flu shot that evening at 5:45 and didn't know whether or not we'd be back in time for that.  So in the split second I had to make the decision I told her that I couldn't make it at four and that I'd be in today.  Looking back it was a bad decision.  I could have cancelled LM's doctor's appointment or maybe even made it back in time and the extra driving wasn't going to kill either one of us.  But when put in situations where I'm already frustrated and have to make quick decisions, I don't always make the right ones.  So the result was that I didn't have any Oxycontin for last night or this morning.

When I woke up this morning I felt heavily drugged, withdrawal will do that to you, it's like it sucks all reason and equilibrium and energy from you.  As I said before, it's BF's birthday, but despite that, I had to ask him to take LM to school for me and to be late for work as a result.  When they left I climbed back in bed and slept for two hours until it was time to go to an appointment with my rheumatologist, right around the corner from my pulmonologist.  She had squeezed me in for an appointment because the pain in my left leg has gotten so bad that I limp all of the time, I have trouble with stairs, with getting up or sitting down on the couch, with getting in and out of be, with standing, walking, pretty much everything you need to use your hips and legs for, including certain private acts.  Driving to the doctor was as bad as I thought it would be, which is why I hadn't drove with LM.  I had trouble keeping within the lines, I was out of it, I definitely shouldn't have been on the road, but I needed to see my rheumatologist and I needed to get that prescription, so I did it, I'm not proud of it, but I did it.  So I saw the doctor and she wrote me the prescription instead of making me go next door to get it from the other doctor and an order for an MRI to try to figure out what's going on with my hip.  Pretty awesome.  Then, I had to make a decision - would I go home and get the 'script filled right away or would I go to get BF's last birthday present.  I decided to get the present, hoping that the pharmacy in the mall would fill my prescription.  Driving there wasn't so bad my concentration was a lot better and so was my equilibrium, so I wasn't such a menace.  The pharmacy at the mall couldn't fill it, didn't have enough pills, but I just forgot about that and went about my shopping, picking up the gift and getting back to my car as quickly as possible.  I hauled ass back home to my pharmacy where they quickly filled my prescription and I gobbled down two pills before I even left the store.  I came home and laid down for half an hour, waiting for the pills to kick in, waiting to feel a little more normal.  By this time it was 4:50 and I only had an hour until BF got home from work.  I wrapped his presents and got them all set up where he'd see them when he walked in.

Then he came home, opened the new space heater he'd bought, got the mail, then asked me what we were doing tonight.  You see not only does the day have to go perfectly, and the gifts be thoughtful, but I also have to take him out to dinner (or make him dinner, which is not a possibility with the state of my legs).  I told him I hadn't really planned anything, but we could go somewhere he liked, I had $25, and I'd pay him back tomorrow for anything we went over that.  He was pissed.  I hadn't made him dinner and here I was "asking him to pay for his own birthday dinner."  I didn't know what to say.  We've spent a couple birthday's at home just enjoying each other.  My last birthday, we went to my mom's for dinner and he got me a gift that he wasn't "happy with, but couldn't think of anything better," my mom hadn't gotten me a gift at all, but that was okay with me, it was all okay with me because I was spending my birthday with people that I enjoy, having a nice time.  Then he proceeded to ignore my gift and blast me for how much I'd messed up his morning because he was 45 minutes late and he got crap from his boss, who was out of the office and couldn't deal with a problem with the phones that had happened in BF's absence.  Then he started digging into me about how I never take responsibility for anything and how I don't do anything around the house and how I make everything his fault and how miserable I make his life.  I didn't know how to react but to defend myself.  I'm sick, I can't take on many responsibilities because I never know what's going to happen with my illness to keep me from living up to them.  I can't keep house or cook because I can't be on my feet for long and it's difficult to go from standing to sitting over and over again if I try to do things in small pieces.  I also reminded him that he doesn't do nearly as much housework as he should and that I am not a maid.  I don't work because I'm too sick to work, not because I have chosen the stay-at-home-mom route and have accepted all of the responsibilities that go along with that.  We went back and forth for a little while and then he pulled his usual move and escaped to the bedroom.  I let him be and started this post.  He came out a while later, said some more insulting stuff and them asked me if I wanted to go have dinner (since it was getting late).  I told him "no," I wasn't going to go if he was going to be mad at me for the whole meal.  This apparently pissed him off and he stirred up the fight again, but I wasn't going there.  I told him I had bought half of his gift last month (September) when I had money, but was counting on getting the best, most expensive part this month (October).  I said it would have been a lousy gift without that part, but that if I would've planned to take him out to dinner I would've had to not buy the gift.  He didn't respond with much.  Then he stopped talking to me.  Then he went out to the kitchen and said that he was going out to get something to eat, did I want anything.  I asked where he was going, he said he didn't know, I said I couldn't tell him what I wanted without knowing where he was going.  So he zipped up his coat and left, coming in 5 minutes ago with a Wendy's bag which he set on the arm of the couch and then departed to the bedroom again.

I don't know what I'm supposed to do.  I'm so frustrated.  If I could pick up and become the perfect housewife he wants, I would.  If I was just being lazy, I'd get off my ass.  If there was something that I could say to make him understand that I don't do this because I like it, I'd love to know what it is.  I think we're both getting to the end of our rope here.  I don't think that it can go on like this for much longer.  He's too unhappy.  I'm used to unhappy, being chronically ill makes you perfectly suited to deal with disappointment every day of your life, but I don't want to lose him.  I love him more than anything in this world and I think that if we could just overcome these hurdles we could have a really happy life.  I just don't know how to do that and it scares the shit out of me.


Scarlet Begonias and a Touch of the Blues

When I was in 9th grade I met the other me, I guess you could call her my soul mate. I don't know if they exist, but I know that if they do, she's mine.

She was a year younger than I was, but we were both old souls and Aquarians to boot, so we knew that things like age were unimportant in the grand scheme of things. Initially she rubbed my then best-friend, Brooke, the wrong way, the same way I'm sure I would have felt if Brooke had started going on about a new girl that I was going to love. I mean when someone comes along and has a life-changing moment with you best friend, starts hanging out with her all the time, audibly clicks with her on a level that you never have even approached, you might tend to get a little ticked off. I don't think that Allie had a "best-friend" per say, but more like a smattering of close girl friends. I on the other hand had a very serious relationship with Brooke.

Brooke and I had been inseparable since the first day of seventh grade. I had started that day apprehensive, the geeky girl at a new school with no real friends. The class was set up with two rows of desks on both sides of the room and one at the back. I took on of the seats in the middle of the back row as the side rows had filled up. She was the last person to come in and she came and sat down right next to me. That was it. From then on we were attached at the hip. She was like the older cooler sister I never had. She new just how to rebel, but still get your parents to do stuff for you. She knew all the music to listen to that was both incredible and would make it clear that "THEY" didn't understand us. She had a closet full of band tee shirts and oversized jeans, and enough eyeliner to paint our world black. She taught me all about bands, makeup, boys, cult movies, pot, lsd, tequila, and worlds more. Most of all she taught me that I was not just some bookworm sitting in the corner not fitting in, wearing the wrong clothes, listening to the wrong music. She saw someone special and wow, did I feel special. This beautiful, 5'10, 120lb. anti-goddess had strolled into the classroom, sat down next to me, sized me up, and decided that I wasn't a loser, I was Her New Best Friend.

It went on like that for a while, the two of us, unbreakable. Then I met Allie and things changed. I learned that I didn't have to be so hostile to the world around me, that there were other equally rebellious ways to act out that maybe wouldn't worry my parents quite so much, or scare my classmates. For a while the three of us were the best of friends. Boys would come and go, sometimes stealing one of our three for a little while, but always returning her, usually a bit wiser.

Brooke always just seemed a little bit angrier at the world, a little more sullen, everything with her was just to another degree. As we grew up she needed the approval of guys more and more and of us less and less. But we let her go do her thing, never completely, always keeping in touch, eating lunch together, seeing each other at parties, but by the time she was 17 she was dating a guy who'd been legally buying beer for years and he had her under his thumb. It's sad when no matter what other people tell us we just can't see how beautiful we really are.

But as Brooke drifted away from us, Al and I just got closer. We had sleepovers every weekend, staying up until the sun came up talking about anything, and everything, and nothing at all. We dated best friends. We shared pregnancy scares. We tried ecstasy together and danced among the stars. We trekked around this great city, enjoying our immortality, testing our invincibility. We cried for each other's losses, and celebrated each other's triumphs. She became my sister in this life, just as surely as she's been my mother, or my daughter, or both in others. When we had a group of friends, we shared our love with them, when the group shrunk down to just us plus one, let's just say he got to feel how much love there really was concentrated between the two of us. We spent glorious summers throwing caution to the wind and squeezing every last drop of enjoyment we could out of the night. She was my first real love, though so much more than a lover as it was not her body I yearned for but her mind and her fellowship. I don't think many have seen anything like us, it was really the experience of a lifetime.

We would see Brooke, though less and less as high school came to a close. She had gotten involved with some really negative people and some really killer drugs. They had a serious problem with strong women. Women who demanded to be treated as equals. Women who could hold their own and didn't need a man to sanction their happiness, or existence for that matter. They had no problem having Brooke around them. Looking back now, she appears so tragic to me. Depression had such a deep, nasty hold on her, but she rejected the medicine and therapy that could have helped her in favor of heroin and emotional abuse. I should have done more to help her. It's something that I'll regret not trying harder to stop for the rest of my life. Because she was my first love and she deserved better. Better than her jerk boyfriends, better than sqatting in bad parts of Philadelphia, and better than dying because of the hold that awful drug had on her.

Allie and my relationship stayed close until it came time for her to go to college. I was a year ahead of her in school, but because of my partying ways and my inability to balance that with school, I stayed where I was and attended community college. Allie managed that balancing act as if she was born to do it. Parties and drugs, but homework got in on time and done well and she had the brains to boot! So off she went, to our mutual dream, Boston. She came home and visited a lot in the beginning, as she was still dating a guy who lived here, but once that ended her visits became fewer and fewer and we saw less and less of each other.

We still see each other from time to time, chat on the phone once every couple months, but she's busy with work and her boyfriend and school(Just finished her Master's at Columbia, Lucky Bitch) and I'm busy with BF and the LM and being sick (you'd be amazed at how much time that last one steals), so we don't get to talk or see each other as much as we'd like to, but I guess that's what happens sometimes. I haven't stopped loving her with all of my heart and when we do see each other, the only way you can tell that anything's changed is all of the new stories we've got to tell each other.

So where did this tale come from, why now? I guess I was just feeling blue myself and in need of a real girlfriend and I realized that I just don't have that anymore and I don't know that I ever will. As much as I love BF and even though he's my friend as much as my lover, he'll never be her, and that's ok. But I really do just want her and it's really hitting me, now that she's setting up her life and her career in NYC, that she's not going to come back here and have a life side by side with me and that our kids won't know each other, let alone play together, and we're not going to grow up to be little old ladies together.

Tonight, that's breaking my heart.

So thanks for listening to me again. It help's to be heard.


Melancholy Baby

Do your kids ever just break your heart into pieces without even noticing?

LM was asked to draw a picture of his family this week.  He drew his mom, his mom's boyfriend, his mom's boyfriend's daughter, and his dad.  He captioned it "Dad me Mom [pseudo-step-sister] and Dad," Notice who's missing?  Yep, that would be me.  And notice that he's calling his mom's boyfriend "Dad" when he's never called me anything but "Rachel."  Yeah, I felt like I'd been punched in the chest as I sat at the table trying not to cry or puke, the two things that my body seemed to think were an appropriate response.  I didn't want to make him feel any worse, but damn was I feeling blasted into a thousand pieces.

I've been in love with that little boy since I first met him with his long dark eyelashes and his adorable stripey pajamas.  I loved rocking and singing him to sleep at night. I changed diapers as if they were nothing to be bothered about. I watched him grow and develop, learning to walk and talk at the exact same time.  Watching that talking move from words to sentences at lightning speed.  Watching walking turn to running just like that ::snap::.  We worked together (and when I say we I certainly include his dad and mom in the mix) to do the potty training thing, high-fiving his achievements and reassuring him when he didn't make it.  Started school together, taking pride in every step he made in reading and writing and math.  Beaming as everything seemed to come as easy to him as it had to all of his parents.  I love watching him grow, coming up with crafts we can do during lazy afternoons, making Halloween costumes, decorating the house for Christmas together.  I love being his step-mom.  I love that I've been in his life from the beginning, from before he could remember anything else, but with this one picture, I felt as if I didn't exist.  It was like all of the effort I'd put into shaping this little man into a great big man was invisible to him.  Like I was invisible to him.

His dad followed him into the living room and had a had a talk with LM about how he'd hurt my feelings by leaving me out of his family picture.  LM said he'd just forgotten and miscounted at the time that he drew it and that he was really sorry.  I felt awful for him for being in that position.  He didn't mean to leave me out - he's only six, he just forgot.  He wasn't being malicious, trying to hurt me.  It's not his fault that at his mom's house they stress the whole concept of family, and what everyone is to everyone else, and all of that, while at our house things are more relaxed.   We don't say "Our family trip for today is..." or tell LM that I'm his stepmom and he should call me mom or something else to symbolize that.  It's up to him here, and I feel like over there, at his mom's, his very impressionable mind is filled with ideas like "call X your sister, call X Dad, that way we're more of a family" And I'm not saying it as direct or blunt as all of that, but up until as recently as right before our court case in August, LM was calling these people "my mom's boyfriend" and "my mom's boyfriend's kid" and I can't imagine him just coming up with new titles for them out of the blue like that, especially since he was still at the same school in the same class with the same kids he'd been in class with for two and a half years.  Anyway, somehow he seems to think that they're more of a family than we are, whether that's because of the names they call each other, or the fact that they have two kids and we only have one, or just because the word "family" is stressed throughout their everyday life, I don't know, but I do know that it hurts to feel like our family is secondary in his mind, or not even a family at all.  And that hurt was just amplified when he symbolized his family as all of them plus his dad.

So while they were in the living room talking about how the picture had hurt my feelings, BF did something that I'm really not sure was a good idea or made anything better; but was clearly done with the best intentions.  He told LM that he should apologize to me and redraw the picture with me in it.  He apologized ever so sweetly, gave me a big hug and kiss, and told me he didn't mean to leave me out, that he'd just lost count.  Despite the sweet, loving way it was delivered, I was unable to really take it to heart because he was doing something that his dad told him to, not something that had just come to him, it was forced, he felt like he had to apologize and fix it.  But I smiled anyway, gave him a big hug and said thank you.  Then LM started on his new picture of his family, this time with two moms, two dads, and one pseudo-step-sister.  He didn't label this one, so I had no chance to see if he'd call me "Mom" like the Ex's BF is called "Dad," but it was a nice picture and he even asked me if I'd like "fancy" or "regular" hair - the difference, "fancy" hair has a flip on the bottom, "regular" hair is straight.  I smiled and chose "regular," realizing that this might hurt for a little while, but children hurt their parents, often inadvertently, and it happens to every mom at some point in their children's lives.

I love our sweet LM and while he might frustrate or annoy me or break my heart, he's as stuck with me as I'm stuck with him and I wouldn't have it any other way.  I love him more than the world itself.


The Ex - Updated!

How do you deal with an ever-present frustration in your life?  Mine's BF's Ex-wife.

Since our whole court debacle over where LM went to first grade, where she won, she has become more and more of an overwhelming frustration.  Immediately after our court case she tried to renege on the transportation plan that she'd proposed to the judge and was questioned about for an hour.  She also tried to get BF to agree to give up one of our nights with the LM because that's what's convenient with her school schedule this semester and she, for some reason, thinks that she has the right to have more time with LM than we do.  BF was having none of that, so he told his lawyer what was up and once faced with further court time to re-decide the issue. she backed down and agreed to do what she said, under oath, that she was going to do .  It's like she thinks she's the mom and she gets to call all of the shots, like there isn't a second person in the picture with full parental rights.

And it's not just that that burns my ass, she's deceptive and manipulative and straight out lies to us to get what she wants and it's hurting LM.  Last weekend they (she and BF) worked out a deal where she would get to keep him until 8:00 pm on Sunday rather than the usual 10:00 am and we would be able to get him after school on the 28th so that we can go camping.  She's never on time, so 8:00 came and went and they were nowhere in sight, no phone call, nothing.  LM has to go to bed at 8:30, so we wanted to get to spend a little time catching up with him before bed, but clearly that wasn't going to happen.  We got a call close to 8:40 from her saying that she was still about ten minutes away. Her excuse for being so late was that it rained going to and coming from their destination.  She has no respect for our time with LM; she knew it was raining and that it would take longer to get home, yet she didn't leave early or anything, she stayed exactly as long as she'd planned to.  Then when LM finally got home we found out that they were late because they stopped at Cabela's, a national chain of hunting, fishing and outdoorsy stuff mega-stores.  We found this out because he's crying and talking about what a jerk his mom is for stopping to look around a store he had no interest in when he was supposed to be going home to spend some time with his dad.  He felt like she had cheated him out of time with his father, something that she does on a regular basis.

The week before, she asked if she could keep LM late on Saturday night because it was her birthday.  Totally rational request, I mean if we were having a birthday celebration for BF's 30th birthday, I would hope she would allow us extra time with him so that he could attend.  The thing is, she didn't want to spend extra time with him.  She went to a concert with her boyfriend and left LM with a babysitter, her sister Sara.  So the extra time she was asking for was not for her to get to spend time with her son on her birthday, it was so that her sister could spend more time with LM, time that he should have been spending with BF and me.

I felt lied to, manipulated, and just disrespected.  I feel that way often.  She's always late, usually by an hour or more.  She has no respect for my time because I don't work, something she blatantly said to BF a few weeks ago.  She's still bitter about their divorce, which she openly admitted would have happened with or without my influence.  She also still really bitter that LM stayed home with me when he was 2-3 instead of going to daycare, she acts like I took time with her child away from her, regardless of the fact that she would have been working and he would've been in daycare with strangers during that time even if they'd stayed married.

Right now, she's trying to make me put LM in the Halloween costume she made for the school party rather than the one I'm making.  She also wants me to copy her on every email I send to LM's teacher because, in her words, I'm "usurping [her] role as his mother, " and, "actual parents are traditionally the points of contact." Guess what - I'm an actual parent, LM calls me his parent, the court calls me his parent, I’m his parent.   Finally, she says that "it would be best for [LM] that if anyone represent him, it be [BF] or I." Why? She give no reason, but I called shenanigans on all of it.  I'll be driving LM to school in the costume that I made him, which he's really excited about.  She going to the party, so if she feels like embarrassing and upsetting LM by making him change costumes in the middle of the party, that's up to her and she'll deal with the consequences.  I hope she doesn't.  I hope she doesn't put him in a position where he has to choose between parents over a Halloween costume.  I hope for once she can be unselfish and let go of control long enough to let him have a good time.  And I realize that I could also be the bigger person and get the costume from her for him to wear to school, but he's already so excited with the costume that I'm making him.  He loves the idea of having two different Halloween costumes, he helped pick out the fabrics, he helped me to fit his mask and is really interested in all of the parts that I'm sewing, and he loves the idea of being something more "scary" for school.  I'm not going to take that away from him and I don't think anyone should.

What's sad is that I would have understood how she was feeling and considered changing things if she hadn't been so rude and demanding.  She didn't ask me a single question, she just told me what was going to happen.  Clearly, she doesn't have any negotiating skills.  When you want something from someone or you want someone to do something your way, the least thing you can do is ask rather than demand.  Being bitter and excessively assertive isn't going to get you anywhere.  And it didn't.

These are just a few of the recent episodes that have angered me.  She does it on a pretty regular basis.  

I'm stuck with her, she's LM's mom so she's not going anywhere, but I'm as close to him as a second mother and I'm staying right where I am too.  The most important thing for me is that this doesn't spill out into an arena where LM has to deal with the fact that his mother and I think so very little of one another.  So far it hasn't and I won't be the one to do that to him.

So how would you/do you deal with these kinds of people in your life? I'd really like to know because I'm at a loss, but I hate being angry with her all the time and it drives BF crazy.  He's able to just brush off her various unpleasant behaviors, but I just don’t know how to do that.


Here I was thinking that she was going to play the good mom and not bring LM into this little dispute over where and when he will wear which costume made by whom, but apparently not.  

Tonight as we perused the racks at JC Penney, he came to me with a look of concern on his face and said that his mom had told him that she was supposed to make his Halloween costume, not me.  

Faced with what was so clearly a little boy dressed up as a punch in the gut (definitely not the iSomething costume LM said the Ex was planning), I simply told him, with as light an air about it as possible, that I could continue making his bat costume and he could wear it to school, or he could wear the costume his mom was making him, whatever he wanted.  
He said I should keep making the bat costume.  



Something's wrong with my eye. Feels like a corneal abrasion or something like that. It's watering like crazy and it's hard to open. It started bothering me around two o'clock. By six, when BF came home, I was laying on the couch, nose running, eyes tightly closed trying to...I dunno, disappear, I guess. BF saved the day though. He had vision correction surgery a few years ago and had steroid and anti inflammatory eye drops. So I used those and then when after 15 minutes I was still in pretty bad shape, he sent me off to bed to rest. I slept for a while and when I woke up I was feeling a lot better. I don't feel as well now as I did when I first woke up, but it's bedtime soon, so I get to rest again. Tomorrow I suppose I'll find an ophthalmologist and get it checked out. I need to stop wearing my contact lenses to sleep and stop putting my eyes at risk. You only get one pair, right? Well, until they start growing them.

Anyway, on to more interesting things. I started work on LM's Halloween costume today. He's being a bat, it's going to be cool. I'm a bit pissed off about Halloween this year. Historically, he's gone trick-or-treating with whichever parent was scheduled to have him that night. This meant that the Ex had him for every Halloween of his life, with the exception of last year, when we had him. This arrangement worked fine for her when she was getting him every year, but a week ago she IM'd BF and said, rather rudely, that we had had him last year and this was her year. This is how everything works with her, when she's benefitted by the situation it's just fine, when she's not getting exactly what she wants, she bitches until it goes her way and that's exactly what happened. BF is so sick of dealing with her and her bullshit every single holiday, that he just gave in and said that she can have him this year and from now on we'll alternate years. It's frustrating that BF so strongly avoids confrontation with her that she always gets her way, but as it turns out, I get my way here too. She works and goes to school so she's too busy to participate in any of Jake's school events, but I have plenty of availability, so I get to make him a costume for school on Halloween and attend his school Halloween party. We're also going camping the weekend before Halloween from Friday afternoon through Sunday night and the campground has all sorts of holiday festivities, including trick-or-treating and hay rides. So we end up getting him for Halloween anyway, just not for official trick-or-treating Monday night. LM's really excited about his bat costume, but even though he said he wanted to go with something scary this year, he doesn't want to be a vampire bat ::shrug:: I'm sure we'll have some scarier costumes in the coming years. His mom has been tasked with making him an iPhone costume. I'm glad he decided to task me with something easier, that I can do well. His mom has always let him be whatever his favorite thing was that year, like a volcano, or a vacuum cleaner, with varying degrees of realism. I like going with animals or humanoid thing better than some of his off-the-wall things-I-like-to-play-with ideas, I think they come out better. Last year I made him a dog and he loved the costume and it looked really great. I'll post a picture tomorrow.

On the health front, me, my mom, and BF all went to the Lupus Foundation of America's Living Well with Lupus Symposium. I got to meet and talk for a bit with Christine Miserandino of ButYouDontLookSick.com. She's my lupus idol, it was really cool. The first breakout presentation we went to was pretty bad; the woman presenting wasn't very good, her PowerPoint was all messed up, and the topic wasn't what I expected or really of any value to us. The lunch was mediocre, though the desserts were really good. The second breakout session was great. It was less of a presentation and more of a moderated discussion for young women and teens with lupus. It was great. We had a chance to discuss the things that affect our young lives, rather than the issues that are more often discussed about women who are of a more typical age for coming down with lupus (30-50ish). I got to share what I've learned about lupus thus far, things like sex, having babies, drinking, going to college, starting a career, etc. I also made several connections with people that I think I'll stay in touch with. Some I hope to be able to advise as they come into womanhood, but one woman I met is about the same age I am and she's at the same sort of places in her life as I am regarding things like where we are in our diseases, relationships, and wanting to become mothers. I hope that I've found a new friend who can really understand where I am in life.

So that's all for now, it's bedtime and BF's waiting for me. I'll write again soon. See ya!


Lupus Sucks!

Yes friends, it's that time of year once again, time for the Lupus Loop. Our team will be walking/jogging/running (ha!) the 2.5 miles of the loop in Fairmount Park on October 30th. Last time we did it it was a blast, lots of fun for everyone and we raised tons of money for a very good cause.

I'd love for any of my readers to join team Lupus Sucks! But if you can't I totally understand. And no pressure, but if you'd like to help our cause by donating to our team through my fundraising website that'd be awesome. I welcome donations of any denomination, not just the pre-designated ones on the website. Of course if you'd like to become a Lavender, Violet, or Amethyst donor, I'm certainly not stopping you, purple rocks! :)

Here's a link to my site and I'll put another one in the sidebar just so it's easy.

Thanks Friends!



I'm feeling very low. It sucks. I suppose the only upside to it is that I can easily recognize why I'm down and all of the factors that have lead up to this point. That doesn't seem to help though, I'm still sad about all of it, angry at a good portion of it, and downright pissed off at a bit. And I don't know how to resolve any of that for myself, so I figured that writing about it here might help, so it can stop feeling like a lead brick sitting on my chest.

This last month has been incredibly difficult and everything just seemed to be happening at once. First, my grandfather died. He was diagnosed with lung cancer around 6 months ago while recovering from pneumonia, and the last two months things went down hill pretty quickly. The night that Hurricane Irene hit the Jersey Shore, where he made his home, he was in Coopersburg, sitting tight and safe with a big chunk of our large family. It was apparently a very difficult night and by morning they had called an ambulance to take him to the hospital because his breathing was so troubled and he was becoming more and more disoriented. He struggled on into the afternoon as more and more family poured into his hospital room. They moved him to a hospice just after noon and he held on for a few more hours. And then and there, surrounded by all of his children and many of his grandchildren playing his favorite songs and telling the stories of his life, he quietly took his last breath and passed on. He was 82 years old when he passed. He'd served in the U.S. Navy and was father to five and grandfather to eleven. He loved to fish and be on the ocean and he had many friends near his home in Long Beach Island, NJ. He touched many lives, including my own, and for that he will be remembered forever.

So that was the beginning of these unfortunate few weeks. At the same time that I was dealing with my grandfather dying, I was also dealing with negative bureaucracy coming from my school. Now back in February, when I filled out my student teaching application, I made sure to include in the comments section that I am a disabled student, who would require the accommodation of of a teaching placement in on of the suburban districts not far from my home. I made sure to do this because Temple has a very strong relationship with the Philadelphia School District and it's easiest for them to place students there. Living where I do, a PSD school would just be to far away from my home to make traveling back and forth on a daily basis feasible. When I asked my advisor when I should hear back about my placement she said they usually came back in May. So, when May came and went I tried calling and emailing the people responsible for student teaching placement, I got no response. I tried again at the beginning and end of July, no answers again. Finally, the third week of August I tried again, calling and leaving messages for all of the responsible parties several times over and emailing all of them as well. After waiting two days with no response, I emailed my faculty advisor, apprised her of the situation and asked for her help finding out where I was being placed. Within an hour I had an answer: I was being placed in a Technical and Arts High School in Northeast Philadelphia. With traffic: about 1.5 hours from my home. So I'd have to leave here at 5:30 each morning. With my various illnesses and disabilities, this would just be impossible, so I let the student teaching coordinator know that that Friday. He responded by saying that there was no way he could find another placement for me and that he didn't know anything about the disability accommodations I'd asked for. He also told me that I had to let him know by the following Monday as to whether or not I would be able to take the placement. I told him I couldn't let him know that soon because I needed to find out about the accommodations. Anyway, I immediately got back in touch with my faculty advisor, telling her what was going on, pouring my heart out about how abandoned I felt and how I would never be able to get certified with this man standing in my way. She sent my email along to several of the higher ups in the teacher education program and assured me that something would be done. That Wednesday (Aug. 31), I briefly met with the Assistant Dean of Teacher Education, who told me that that Friday he would be sitting down to talk about my case with the Placement Coordinator I'd been having trouble with.

I heard nothing on Friday, so that weekend I went down to my grandfather's house to spend the weekend remembering him with my whole family and the sending his ashes out to sea. Monday I didn't expect to hear anything because it was Labor Day. Tuesday, the Placement Coordinator called and left a message while I was in court (another facet of my own little personal hell that's been going on for the last few weeks, which I'll talk about later). I got back to him Wednesday and he asked me to come in on Friday so that we could talk about the accommodations recommendation he'd gotten about me from Disability Resource Services. So I went in to his office for a huge waste of gas and time. He had gone over the recommendations and was not willing to facilitate any of them. He said that I could have "rest breaks" during my cooperating teacher's lunch and prep breaks, but other wise I needed to be there and be teaching (same as every other student teacher). He said that recommendations were just that and that he didn't have to abide by them, that by certifying me the school would be verifying to the PDE that I could work full time as a classroom teacher and that shortening my day wouldn't fulfill that. I immediately got in touch with my Disability Resource Services rep, who said that she's do what she could to talk to him but she didn't know how far she could get before it was too late. You see, this was Friday and the following Monday was the last day to drop classes without losing money. So she talked to him and got nowhere. She suggested that we go over his head, but that we didn't have the time to do so this semester, so I dropped my classes and re-applied for student teaching in the Spring '12 semester. So now I have a whole four months to find someone who will say that I can have the accommodations I need or to find a pro bono ADA lawyer to sue them. Can you say stress?

How about some more stress? Alright, I think I've got a bit more to vent still.

We (BF & I) and his Ex were having trouble deciding where the Little Man was going to go to school for first grade. None of us were happy with where he went to Kindergarten, but we live more than a half hour from one another and both of us wanted LM to go to school in our district. BF tried to talk this through with the Ex, but she solidly stuck to one scenario where LM would go to school in her district and BF and I would to all of the drives back and forth between her district and ours. While BF presented several possible scenarios, she was stuck to her one and that was that. They tried discussing it several times, but she wasn't willing to give an inch, so they both got lawyers and we all got to court. It was decided between the two parties before we actually got to court that the custody arrangement wouldn't change, that the judge would just be ruling on where LM would go to school. The main point of her argument was that LM would get to go to school with her BF's daughter, whom LM has lived with for three years. One of the other things the Ex presented for her case was this schedule, I'm guessing to make her case look better and to make it look like she wanted to make things more fair. The schedule said that she would come to our house on Tuesday morning and take LM back to school in her school district, after school she would pick up LM at school and then drive him to our house. She was questioned about this schedule for about an hour by our lawyer, her lawyer and the judge. They talked the hell out of that damned schedule. The judge felt that the case was extremely close, but that her case had only slightly more merits and that LM would go to school in her district. We were disappointed, but ready to deal with it; we really only want what is best for LM and if that's going to school in his mom's school district, we'll just have to drive more. I'm still planning to volunteer to help out in his classroom and for events and trips and BF and I both plan on attending PTO meetings.

Once outside the courtroom BF and the Ex went into a conference room to finalize the transportation schedule and just iron out anything was left for ironing. When he tried to talk to her about the driving schedule, she said that what she had proposed in court was unrealistic and she had never planned on following that plan, also that she'd like to change the custody schedule so that she'd get LM Tuesday night rather than Wednesday night. BF was irate to say the least. He agreed to nothing, told her there was no way he was modifying the schedule and let her take LM home with her so that he and I could talk about what had happened.

We spent the ride home simply astounded at how she could just sit in front of the judge and lie to his face about the proposed schedule and how she could be crazy enough to think that BF was going to let her change the custody schedule. He wrote his lawyer an email about what had gone on as soon as we got home. His lawyer was appalled as well. He tried to get in touch with her lawyer several times, but only got a reply when he threatened to send a letter to the judge. Her lawyer immediately had her call BF and let him know that she would go along with the driving schedule. And that was that, until she actually had to do it.

After she dropped LM off at our house on Tuesday after she picked him up from school she complained to BF via text that the commute was making her life "hellish" and that she couldn't do it and would lose her job if she continued. BF took a couple days before he responded to her, basically trying to find the best way to say "you made your bed, now lie in it" and when he said it things did not go so well. She started out by saying that if there situations were reversed that she wouldn't do anything to help him out. Really? That's how you start off asking someone to go out of their way to do something because you fucked up. Things only got more ridiculous from there. As she saw that BF was not giving in she got more and more personal. BF's a terrific father, but a bad human being. She has no respect for me and my time has no value because I don't work. It's actually really pathetic how off the handle she gets when she doesn't get her way. Even when she had gotten exactly her way by convincing the judge to send LM to her school district. What it comes down to is that she thinks that she's the mom and she calls the shots, so she shouldn't have to compromise. So when she does everyone has to pay. It's aggravation none of us needs and when it comes down to what she thinks of me, well for years I've held my tongue to keep the peace, but now she's declared that there won't be anything more than civility between us, so to put it bluntly, she can go fuck herself, civilly.

My last little bit of hell for the last three weeks was yesterday at my little sister and brother's birthday party. It was anything unusual. I just was subjected to a bunch of mom's and their little one's who came running and pressed themselves near when feeling shy or sad or just plain cuddly. I want that and it makes my heart ache to not have it. LM was already solidly entrenched with his mom and dad when I showed up. He loves me, he can't remember a time without me, I'm his parent, but I'm not his mom or dad. He doesn't look to me as protection from the world, he doesn't curl up in my lap for comfort.

So that's it, I'm just feeling low. I need all of the drama to end. I need to stop having big gaps in my life where I have nothing to do. I need a child of my own. And all of it will happen in its own time I guess, I just hate the waiting.


Going Password Protected

So in the next week or so I'll be going to a password protected format because of student-teaching in the fall. There's plenty of stuff on here that it would be inappropriate for my students to know, so I figure that that's the best solution.

So, email me at rachel.educatedguess@gmail.com if you'd like to keep on reading and I'll send you an invitation to read the blog. You'll have to sign up for blogger with a username and password if you don't already have one (your Google info will work).


Tids 'n' Bits

Life's been kinda hectic for the last couple of months.

At the end of April I finally miscarried. It was awful and no one warned me how awful it was going to be at all. Cramps were waking me up through all of the early morning hours, but just enough to be able to get right back to sleep. Around 7am they got worse and I was driftingly sort-kinda asleep until 9am when they started to be much more frequent and far more painful. It took me almost an hour of heavy bleeding and intense pain for me to realize that I wasn't just having cramps, I was in labor and jesus christ did it hurt. I don't know that you can explain that pain to someone who hasn't experienced it; it's like menstrual cramps that are worse than anything you've had coupled with the sense that yes, this may be just the thing that drives you totally mad. It continued like that for another 10 hours of going back and forth between the toilet and my bed, breathing nice big cleansing breaths, rocking, fidgeting, digging my fingernails into my thighs, screaming occasionally, you know, laboring. It got bad enough that I went to the hospital around 8 that evening, but not before passing two "somethings" that each felt about the size of a clementine. They did blood work and an ultrasound at the hospital and by that time the contractions were slowing down and I was in loads less pain. The ultrasound showed that I had passed the gestational sac and the placenta and there was just blood left over, so that was good, it really was over, no more god-forsaken contractions. It was draining and I came out of it totally exhausted. The one thing that's different between miscarriage and birth, besides the pushing, is that there's no pay-off; there's no baby at the end as a reward for all of that effort and pain. Somehow I just know that it would've been totally worth it if I could've had one. I spent two nights in the hospital because my PT/INR, which measures how much of my blood thinner is present, was too high and coupled with the bleeding, they just wanted to keep an eye on me. Three weeks later they went in and laparoscopically tied my tubed, or sutured my tubes or whatever it is they did. I spent about a week afterwards feeling generally crappy, but I'm back to my normal crappy now, so I'm pleased.

Two weeks later, I started school back at good ol' Temple University. The put me through hell to get registered and I wasn't actually registered until the day before classes were to start, but it all turned out fine so there was really no harm besides a stressed-out Rachel. I'm really enjoying my first class: Effective Teaching: Theory and Practice. We've gotten just that: a nice balance of theory and practice on the most effective strategies to use for both classroom management and instruction. It's a small class of about 11 people and the instructor, a former high school principal, is really good. So that's going along well, two evenings a week for about 2 hours we get together, talk about teaching, each give a mini-lesson, deal with any new theory, and break. I'm really enjoying it. It is nice, however, that it will be over in a few weeks and my second summer course has been converted to an online course, so I won't have to drive the hour back and forth from school each time and I might actually have time for a vacation in there somewhere!

Around the time school started, or maybe just before, I decided to get serious about losing some weight. I've been on long-term prednisone treatment and besides keeping the disease in some kind of check, it also causes pretty steady weight gain. So, I set about dealing with that. I got a membership to the YMCA and started the Body-for-Life diet. So far, no big results that I can see, but I've only been on the diet for two weeks and working out for a month. I have been able to go up a notch in my belt, so that's gratifying. So, we'll see. I'm hoping that if I stick with it I could lose 35-40 lbs in the next 10-12 weeks and gain some lean muscle mass, which I think will help me to move better and look better than I do right now.

Anyway, that's it for me right now. I'm going to go back to reading "IT" by Stephen King, one of my favorites.



At 7am I am usually far from awake. Well, not far really. I wake up, go to the bathroom, if I have a headache, which is about half the time, I take some Excedrin, and I go back to sleep for another three or four hours. I rarely “wake up,” I just sleep walk.

Today, however, I got back to bed and somehow the fact that I’m going to have to student teach in a few months just flitted into my conscious mind. I batted it away and groggily attempted to snatch back the sleep that was trying to slip away. No such luck. Try as I might, thoughts of this new undertaking persisted. How am I ever going to do this? Are there lesson planning resources out there for the new textbook? Do I even remember how to write a lesson plan? Revolution? Constitution? Civil War? Reconstruction? Who was President in 1836? What does the 23rd Amendment say? In what year did Texas join the Union? How am I ever going to do this???

And with that I was very definitely awake.

I got up, put on some clothes, and made an attempt to dig in to my teaching resources. I say attempted because it look like I didn’t save as many of my resources from my last stint student teaching as I thought I did. Also “attempted” because right now my hips suck and somehow I pulled a muscle in my back while sleeping two nights ago, so I couldn’t get down on the floor to really get easy access to all of my books and notebooks and I quickly got out of breath and dizzy, standing half bent over, trying to sift through my papers. So I really didn’t get anywhere with that little adventure. And some of you will look at that and say, “Adventure, really? She got up, looked in a bookshelf, and didn’t find anything.” Those of you who suffer from similar chronic illnesses will know exactly what I mean when I call it an adventure, when I say that it took me a half an hour of sitting on the couch, taking deep breaths and just being still, to recover from my little adventure.

Sometimes I think I’m crazy to think that I can get through this whole teacher certification process when I have trouble getting through a load of laundry. I’ve been feeling especially discouraged lately because physically I just haven’t been able to cut it. Starting in early February, the joints in my legs started flaring up pretty badly. It’s mostly my hips, but when you throw one joint out of alignment, the rest soon fall out, too. So far every joint in both legs, plus my right shoulder, elbow, and wrist (from using my arms to lift myself out of a seated position) have been in major amounts of pain. And now I’ve got a pulled muscle in my back to deal with, in addition to the pain in my hips, so it’s doubly hard to do something as simple as walk to the kitchen. And I think that I’m going to be able to work a seven-hour day, five days a week? Stand in front of a class? It’s going to take some serious adaptations -lots of breaks to sit down and rest, lots of naps after school, lots of devices that I haven’t thought up yet. It’s scary. It’s exciting. If I succeed…I can’t even imagine how good it would feel to succeed in this endeavor. I’ll have proven to myself that I can accomplish a task that’s truly difficult – something that I don’t know that I’ve ever really done.

That’s not to say that I haven’t been successful when I’ve tried to do things in the past, it’s just to say that nothing that I’ve accomplished up to this point has really felt all that difficult, academically at least. Part of that is that I tend to only continue with things that come to me naturally. School has always been one of those things; with a minimal amount of effort I’m able to get pretty good results. I don’t have to break my back - it just comes. Student teaching is not like that at all. It’s a real challenge. The sheer amount of work involved floors me; putting in a full day of teaching and then going home only to face several more hours of reading, researching, and lesson planning. Then there’s the creativity aspect, one that puts forth another real challenge for me. Trying to come up with lessons that conform to the university’s teaching standards, while being interesting, stimulating and challenging for twelve and thirteen year olds is a tall task. Trying to balance that and my personal life? Hard. Trying to balance that, my personal life, and major chronic illnesses? I’m hoping that it’s not simply too much.

Enough worrying for today. The sun is shining, it’s supposed to get up into the high 70’s, the Little Man is home from school this week for Spring Break and we’re going to plant some seeds for our vegetable garden, and I have a whole month to worry about school before school starts, so enough worrying for today!



Well I must say it’s been quite a week.

I’d been feeling…well, off, I guess. Just strange. Even for someone with as many issues as I do. Lots of little things that all added up to one big one. After two years without a period, I had several days of menstrual-like cramping mid-January, followed by nothing, no period, not even spotting. Usually a night owl, I found myself tired enough to go to bed at ten o’clock in the evening. The skin on my face, usually clear of acne despite the telangectasia that marks it with tiny red dots, had started breaking out. My breasts were sore like they’d never been. I’d thrown up two nights in a row.

It took me two months to add all of these things together and reach a conclusion greater than the usual “I’m sick.” And still, as I peed on that pink and white stick, I thought that there was no chance that I was going to see that second little pink line. And then, there they were, two parallel pink lines, sure as day.

I can’t even start to relate the sheer number of emotions that ran through my head. I kept looking at myself in the mirror and telling myself that I should really wipe the grin off of my face because this was not good news. Scleroderma and pregnancy do not mix well. Pulmonary hypertension and pregnancy is frequently a killer cocktail – frequently being one-third to one-half of the time. The probability of this pregnancy ending in my death, the baby’s death, or both was astronomical, but there I was, grinning like an idiot in my bathroom mirror.

After I got over my initial reaction, I was just freaked out. I spent the day and the rest of the week reading everything that I could find about pulmonary hypertension and pregnancy: studies, statistics, other women’s stories. BF and I talked about it. Though there wasn’t really a lot to talk about, we talked anyway. About what a huge risk it would be to try to carry out the pregnancy. About how really truly sick I would get. About how poorly I had responded to these same hormones when we had done IVF and I ended up on a ventilator with acute respiratory distress syndrome. About how hard it would be to terminate. About how hard it would be to deal with the death of the baby, of me. It was an incredibly hard decision, but after talking it over, reading all of the literature, speaking to my doctors, we were resolved that the best decision for us was to terminate. This would not be our only shot at having a child that is biologically ours; our six frozen embryos are just waiting for the time to be right. It was going to be hard, but I really felt like this was the best option.

Let me say now that I thought long and hard about writing these words here, and I almost didn’t, but I feel like it’s important for people to hear stories like mine, and important for me to have a place to tell my story. Maybe it’ll help someone to understand a bit better how real decisions like these are, how hard they are, but how necessary it is for women to have the option to make them. I’ve always been pro-choice on the issue of abortion, but I had resolved that I would do all that I could to never have to make that choice. Now, I’m glad that I had the choice, that I wasn’t forced to carry out a pregnancy that could’ve killed or crippled me, that’s could’ve devastated my family. I feel the need to tell this story because though I believe my reasons to be valid there are those who don’t, and there are those that believe that these may be valid reasons, but that women with other reasons, things at stake that are less than death, ought not be afforded the same choice. Honestly, I think that’s bullshit, choice is choice and anything less than choice for every woman is unacceptable. I think my favorite singer/songwriter Ani DiFranco put it beautifully:

"… if you don't like abortion
don't have an abortion
teach your children
how they can avoid them
but don't treat all women
like they are your children

compassion has many faces
many names
and if men can kill
and be decorated instead of blamed
when a woman called upon to mother
can choose to refrain

and contrary to eons
of oldtime religion
your body is your only true cominion
nature is not here to serve you
or at any cost to preserve you
that's just some preacherman's oldtime opinion

life is sacred
life is all so profane
a woman's life
it must be hers to name
let an amendment
put this brutal game to rest
trust women will still take you to their breast
trust women will always do their best
trust that our differences make us stronger, not less"

I’ll stop ranting now. It’s just the first time I’ve had a connection this close to this particular issue and it gets to me that there are actually people out there fighting for me to not have this right.

Once I was sure, though melancholy, about my decision, it ended up being made for me. I went for and ultrasound this morning to determine how far along I was. After searching for it for what seemed like an eternity, they determined that I was about ten weeks along, but they were unable to detect the fetal heartbeat. My body, it seems, had made it’s own decision about how safe this pregnancy was and ended it. I feel only relief and validation. This was not meant to be and that’s okay. We’ll have babies when the time is right. In the next nine months, instead of dealing with what would surely have been a difficult pregnancy and, if I beat all the odds, recovery, I will be completing student teaching and finally become a certified teacher. I will have accomplished a major goal and will go on to new motherhood satisfied with my personal and professional accomplishments. I will be ready and healthy (hoping and praying). I will be all the more grateful for my life and for that of my child given what I’ve gone through and given up to get there.


Best Vacation Ever

I just had the best vacation ever and fell in love with Puerto Rico.

BF and I had been looking to take a Caribbean vacation. Winter was beating down on us and we were both in need of a world without snow – this winter has been especially irritating on the snow front, with the white stuff covering the ground pretty universally since the first big snowstorm of the season in December that dropped something like two feet on us. We had considered several options, but they were all just too costly to be justifiable.

I happened to mention our predicament to my mom in passing when she alerted me to the fact that my uncle (technically my second cousin, but I’ve always called him my uncle) and his family own a home in Rincón, a surf town on the westernmost part of the island. I was really surprised and understandably overjoyed. What had once been an unattainable $3k vacation had just shrunk to $350 plane tickets and a rental car.

So I got in touch with my second cousin, who said he’d be down there until the 13th of March and that we were welcome anytime before then. So we got our tickets, made all of the necessary arrangements and waited anxiously to leave on February 23rd. We got a great set of flights that allowed us to take full advantage of all eight days we stayed. We left Philadelphia at 7:00 am and got in to San Juan around 10:30 am then drove the two and a half hours across the island to Rincón, getting to the house at just about 2 in the afternoon. On day seven of our trip we left Rincón and drove back to San Juan, stayed there overnight and got a plane back home at 7 in the evening on day eight.

Rincón was beautiful. The barrio we were staying in, Stella, was a nice quiet little town. Not very touristy at all and everything that we wanted to see was within a few minutes of the place we were staying, the beach was a block from the house, the lighthouse was five minutes away, there was a coral reef that we snorkeled out to right near the lighthouse. On the whole it was just a great place to be, and very tourist-friendly despite not being very tourist-oriented. There are US based chain stores all over the place – Walgreen’s, Burger King, Kmart, Costco – and nearly everyone has at least a workable hold on English for those of us who speak all of ten words of Spanish. A couple of days we just hung out at the beach and snorkeled right there. One day we went out to the reef and got to check that out. I was wowed by all of the sea life that was right there, we didn’t have to take a boat out or anything, but I saw all different kinds of fish of different shapes, sizes and vibrant colors and I even saw a conch-like snail thing swimming around outside of its shell. Another day we took a trip up into the mountains, through the jungle. From the top there was an old castle that we climbed up into where you got a panoramic view of the coast, about 30 miles away. It was breathtaking.

The first day in San Juan, we got some lunch at Señor Frogs, which I suppose might be entertaining on a Friday night when everyone’s drinking, but for a Tuesday afternoon is just obnoxious and over-priced, and then we took a walk around the harbor area and checked out all of the little street vendors that pop-up whenever there are cruise ships in port. We had a nice time that day, but we were really in need of some down time, so we spent most of that evening hanging out at the hotel, watching movies, swimming in the oh-so-chilly rooftop pool, and eating junk food.

The next day we took a taxi up the hill to El Morro, a Spanish fort that was first constructed in the 1500’s. After wandering around the fort for the better part of an hour, we made our way down the hill, stopping at various little historic sites – the governor’s mansion, the Catedral San Juan Bautista – and the little shops that dot the city until we finally made our way to the second fort in Old San Juan, Castillo San Cristobal. San Cristobal was a challenge to get to. Well really, the whole vacation was a challenge. I’ve been having a terrible pain in my ankle for about a month now, we’re thinking that it’s a torn ligament at this point. So walking everywhere was pretty painful. It’s swollen and just generally miserable – great way to spend a vacation! Anyway, San Cristobal is at the top of a great big, very steep hill, but it was worth it. It was beautiful and the views were just amazing. We wrapped up our day with coconut ice that was pretty freaking awesome; I could’ve eaten a dozen, and then headed back to our car and on to the airport.

We planned to get to the airport early, have a late lunch/early dinner, and jump right on our flight. Didn’t happen quite that easily. The process of returning the car and getting through security went by far quicker than we anticipated and then we found out that our flight had been delayed by an hour, so the two hours we thought we had to kill had just become more like three and a half. To make matters worse, once through the security gates we discovered that there wasn’t really anywhere to sit down and order a meal, there were a couple of sports bars with a selection of appetizers and an express Dominos. So we got pizza and settled in to read our books. It was a relatively uneventful flight. They screwed up the in-flight movie, so instead of watching The King’s Speech, we got to watch Wallstreet: Money Never Sleeps, which was just bad. I also had my first experience sitting next to a nervous flyer, well, not so much nervous as scared. I first became aware of this as she clutched my sun burnt arm and buried her face in her sweatshirt as we took off. Of course this was repeated when we hit turbulence off the New Jersey coast, and as we landed in Philadelphia, I just said screw it and held her hand. I felt bad. I can’t imagine being that legitimately afraid of flying that I would grab a hold of whatever person was closest to me for comfort.

So that was the end of our adventure. BF says that he could spend every vacation there for the rest of his life and I tend to agree. It was an amazing vacation and I can’t wait to go back.


I know. It’s been a while.

I keep sitting down and starting to write, getting halfway through it, getting distracted and then when I come back to it it’s no longer relevant. So, I’m going to try to write what I want in the next half hour before I start dinner, hopefully I will succeed. I’m not even going to look at the date on my last entry and try to catch you up, just a few choice details.

A year of monthly chemo has done amazing things for me. My breathing is better, my joints are better, and everything just feels a hundred times better. My hair is thinner, but what the hell, nothing’s free.

My other major problem this year was the evil g-tube that I was using to clear my stomach so that I didn’t aspirate in my sleep. It was one of the most painful things that I have ever endured. Constantly infected, constantly leaking acid on to my skin, leaving it raw and sore. I dealt with that horror for nine months before I found a doctor that was actually willing to touch it and together we decided that my reflux was no longer bad enough for me to need the tube. So they took it out, leaving a second four-inch scar across my stomach and another healed stoma. So now the pain from that is gone too.

Unfortunately, during my August/September in the hospital, they stopped giving me my anti-depressants and I failed to restart them once I was discharged. Over the following few months I sank further and further into a depression that slowly overtook my life. I was miserable by Christmastime. Burying myself in books and movies, becoming more and more isolated from everyone around me. Things came to a head, I won’t go into the details, but there were plenty of tears. I got myself some emergency psychiatric care and got back on my meds. Now, a month later, I’m really starting to see a difference. It’s becoming easier to motivate myself to do simple household tasks. I’m not sad all of the time. Life is just getting easier.

On the other hand, I’m stuck in a weird place. I’ve been so sick for so long and now I’m feeling so much better. I don’t know how to get back to normal. I’m working at it and just trying to take small steps. Things are changing, slowly. I have a lot to figure out. The last time I felt this well I was 21 years old, now I’m 27. The life around me now is nothing like the life I was living then, everything has changed. So I’m working to figure out who I am now, what I do now. I’m starting by going back to school to finish my teacher certification. It’s only two classes over the summer, but then I’ll be student teaching and taking a teaching seminar in the fall. We’ll see how it goes, hopefully smoothly.

And look at that, it’s exactly thirty minutes later and I’ve finished writing. Hopefully this will become a trend.