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.
[Posted with iBlogger from my iPhone]
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.
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.
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.
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!
[Posted with iBlogger from my iPhone]
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!
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:
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
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.
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.
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.