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.

http://www.active.com/donate/lupusloop2011/rachelsuzanne218

Thanks Friends!

Low.

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.

Worries

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 23^rd 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!

On Choice

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 13^th 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 23^rd. 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.

Ani DiFranco - Amendment (Live)

In which I feel sorry for myself...

One of the biggest problems that I have is boredom. It's overwhelming at times. Over the last few years I've lost the ability to schedule anything and with that has gone most of the activities that I used to enjoy. I haven't been able to work in...god, it's been years now. I just managed to graduate from college; I'm thankful that I'm able to manage A's despite my frequent absences. Lately I've had a little relief, BF and I built a deck in our backyard. Well, he built most of it, but I was surprised by how much I was able to help and how I didn't feel like crap when we were done. And from time to time I manage to find a craft to fill my time, like knitting or making the little guy a Halloween costume. This week it's been cutting out paper snowflakes. I love it, it's very satisfying even though it makes my hands all creaky and sore. It's hard to keep busy though; I watch a lot of TV and read a lot of books and do a lot of sitting around wishing I felt better and worrying about the future. I heard today that most people with pulmonary fibrosis die within four to ten years of being diagnosed. What a shitty statistic. I wish I hadn't heard it, but now that I have I can't seem to get it out of my head. So I guess I'll go fold some more paper and try to get engrossed in that for a while.