Bella June

Welcome...?..!

I have a baby sister!

She's amazing.

She was born on Friday, but I thought I'd wait until they named her before I made the happy announcement here.  She still doesn't have a name though and I'm too impatient to not announce her arrival.  We had had a false alarm Thursday night and spent a few hours at the hospital before they sent A. home, where she labored all night.  At 6:30, she decided it was time to get to the hospital and at 9 am, the little cutie was born.  

She certainly doesn't seem to mind not having a name.  Of course when all of your needs are being taken care of and monitored and you've got a huge family, one of whom is usually staring at you adoringly, I can imagine that a name doesn't really matter much.  It's not that my dad and A. don't have any names that they like, they just have too many.  So, sometime soon, hopefully, my sister will have a name.

It feels so cool to say "my sister"; everyone was so sure that she was going to be a boy.  I was making no such guesses, but I really wanted a sister.  I did the brother thing, I've got three step-brothers, and I don't want to belittle my relationship with my step-sister at all, but she's already sixteen, I certainly can't dress her up in frilly pink dresses.  So I am far beyond excited to have this little sweetheart in my life and as unusual as it may be to gain a baby sister at twenty four, I feel like I'm the best equipped to fully appreciate her now.  Friday afternoon I went to the hospital to meet her and just held her and stared at that pudgy little face (that looks incredibly similar to my own) while my dad and A. got some much needed rest.  Last night we went over to their house, BF cooked dinner, and I got to hold her and stare for a while longer.  I don't see my ability to stare at that little face going away anytime soon, I am definitely in love.

Something to Smile About.

In Vitro Fertilization.

I didn't ever think that I would have to be one of the women who even thinks about going through it. Of course I don't think that there are many who do, unless perhaps they have mothers or close friends who have gone through it. I bring this up not because I am infertile, but because I will be, soon.

I thought about this in passing a few months ago when it was suggested that I might have to move from my current immunosupressive therapy, azathioprine, to a stronger drug, Cytoxan. Cytoxan is a cancer drug that's used off-label to treat lupus and scleroderma, among other autoimmune diseases. It will suppress my immune system, but it will also give me some of the side effects that cancer patients receive while undergoing infertility treatment, one of those being a loss of fertility.

I hadn't given this one a whole lot of thought when it came up the first time, but on my last visit to the rheumatologist, my CPRN suggested in no uncertain terms that I should be looking into the cryopreservation of my eggs or, if possible, some embryos, before undergoing cyclophosphamide treatment. I had a "holy shit" moment. It had been the last thing I'd been thinking going into the appointment and something like that can't really help but slap you in the face. Certainly, I know that there is a very slim chance of me being able to carry a pregnancy because of the toll that it would take on my heart, but except for that passing thought a few months ago, I hadn't really thought about the idea that when I did want to get (a surrogate) pregnant, there might be complications. In fact, considering the uncertainty of a lupus pregnancy with my clotting disorder, I was actually thinking that a surrogate pregnancy might be easier than doing it the old-fashioned way; I wouldn't have to stop taking my meds; I wouldn't have to deal with the extra toll on my already aching body; I wouldn't have to worry about a post-partum flare. It was sounding like it might be a pretty good option for me, still does, but now I have to worry about whether I will have any eggs to contribute when the time comes.

So I was a bit freaked out when I came home after my doctors appointment Friday. And as I am prone to do, I spent the afternoon scouring the internet, soaking up everything that I could about cryopreservation, IVF, and cyclophosphamide treatment and its effects on fertility. The first thing that I discovered is that my health insurance does not cover any type of artificial reproductive techniques. Crap. I don't know if there is anyway around that because my fertility is actually in jeopardy because of a medical condition and its treatment, but somehow I doubt that they'll give me the money, or give me the money before I start treatment, which I'm sure can be put off for a little while, but it can't be put off indefinitely. So no money. That didn't stop my research though, I mean there's always the "what ifs" and I like to at least know my options so that I can take advantage of anything that might be a possibility.

Being a still-unmarried woman, my first thought was that I would preserve some of my eggs and then at some later date, when BF and I are ready to have a child, we would unfreeze and fertilize them. Turns out it's not quite that simple when it comes to eggs. The technology is still experimental and far from proven. There is a good chance that if I had my eggs frozen, we wouldn't have any viable eggs left after being unfrozen. The other negative to the egg freezing process is that they have had greater success unfreezing the eggs if they were frozen in tissue, as in ovarian tissue, as in invasive surgery that would remove part of my ovary. Even if I didn't have issues the prospect of being sliced open and having part of my ovary removed, PH patients don't do well under anesthesia, it can be really dangerous, and because of my anticoagulant therapy, any surgery requires at least a four day hospital stay, not top on my list of things to do. But as there is no insurance money to make me choosy, I did look into the possibilities for this option and it turns out that there are several clinical trials for people undergoing chemo and others that would make this possible for me. Essentially, you let them take out one of your ovaries and they keep twenty percent to experiment on and work to develop technology that will advance their ability to freeze eggs in tissue, unfreeze them, and then mature the eggs artificially. The other eighty percent is frozen and preserved for your later use (which really depends on whether or not the trials work and they refine the technology sucessfully). Not a bad option for someone with no money and no insurance coverage. It is definitely still on the list, just not at the top.

Another option that I found was to take the drug Lupron along with the Cytoxan. Apparently the chemo destroys the eggs once they mature, some doctors think that if you take Lupron and essentially shut down your ovaries during treatment then no eggs will mature and the effects on fertility will be minimal. From what I've read, however, this is still a seriously debatable treatment and the results are pretty uncertain. It's possible that the cells in my ovaries that mature the eggs willl be destroyed, leaving me with lots of unmature, useless eggs. It's possible that the chemo will throw me into an early menopause. It's possible that the Lupron will accelerate that process. Or it's possible that it will work and I'll still be fertile on the other side of treatment (assuming, of course, that I'm fertile now). I don't really like uncertainty, so that one went way down to the bottom of the list, right above "Do Nothing." The one positive to the Lupron therapy is that because it's not officially an artificial reproductive technology, I could probably get my insurance to cover it. I hate the money end of this thing.

The last option I explored was freezing embryos. BF and I would go through the whole IVF process except implantation, we'd just freeze as many embryos as we could in a cycle. Lots of issues with this one. Lots of complicated issues. First, there's the "what if we split up" question. Who's embryos would they be? Would he even want them? Would he let me have them? Would I even want them? We're both pro-choicers, he's an athiest, I'm a...well I'm not clear on that at this point, so we'll say that I'm agnostic, and we're both come very analytical, science people.  Neither of us has a problem with embryonic stem cell research, but  that being said, neither of us wants to make a bunch of embryos only to destroy them all later. But we'll figure those issues out.  We could always donate them to an infertile couple or for research.  The anticoagulant - hospital stay deal might still be a problem.  And the drugs that I would have to take to suppress and then stimulate my ovaries might not be compatible with some of the medications that I need to take.

The real problem would be the price. IVF is not cheap and for a couple such as ourselves, where one party is not bringing in any income whatsoever and we're both already carrying lots and lots of student loans and assorted other debt. Hopefully my SSDI will come through very soon and help to alleviate this situation, but there still won't be thousands of dollars left for in vitro. I came across a little ray of hope at the end of my search on Friday. While exploring my options to just go see and discuss the situation with a reproductive endocrinologist I found a very unique program through the University of Pennsylvania's Fertility Care department called Fertility Hope and according to their website, they provide financial assistance for cancer patients who are about to undergo fertility-compromising chemotherapy. They don't pay for anything directly, but instead they arrange for hospitals and drug companies to donate their services to allow those who could end up sterile still have a chance to have children once they're well. They sounded great and except for cancer I meet all of their qualifications for someone who would be eligible for assistance. Unfortunately, there are a lot of programs out there that are aimed at people with a specific disease, but if you have something similar, even with the same treatment, you're out of luck. Pulmonary hypertension, lupus, and scleroderma are among those diseases. Have you seen all of those commercials on TV for new rheumatoid arthritis drugs? Seen AIDS, MS, or cyctic fibrosis benefits and fundraisers? There are more people in this country with lupus than with any one of those diseases, but it's not exciting, it's not novel, it's not in your face, and there's nothing brand new that they're doing to fix it (of course with more money comes new treatments, but that a whole post altogether).  Anyway, I decided that it couldn't hurt to put my case before them and see if they made exceptions to the "cancer" part of their qualifications.  I spent a long, draining hour writing out my story and how much I wanted and needed their help, though I would understand if they couldn't help me.  I went into the weekend with a little grain of hope, but I really didn't expect to get help.  What can I say?  I try not to build things up when I don't think that the odds are in my favor.  I live with disappointment nearly everyday and it sucks, I didn't need to start thinking that I was going to get this, only to be crushed.

But last night, just before retiring the laptop and going to bed I got an email from their program director.  They can help people with other diseases who are going to be taking chemotherapy.  She was very compassionate and said she hoped that they could help me.  I hit the ceiling.  I went to bed floating on a cloud.  I haven't been happier since...well, I don't know when I've been happier, especially recently.  

So it's certainly not a sure thing yet.  There are still some costs associated with the treatments, they don't cover everything, and we'll have to pay a $400 a year storage fee.  There's also still my complicated health situation and IVF might not be something that my doctors will even let me undergo.  It's not even a sure thing that I need the Cytoxan treatments yet, we still have some tests to run and some decisions to make, but if I do, that little ray of hope I had on Friday has become a full-blown sun shower. 

...today it's the latter.

Today was the third anniversary of the death of my best friend and frequent long term boyfriend, Colin. Opus to most others; Colin to me.

My very good and very insightful friend (who needs to move back home from Austin because I miss her too much) wrapped up how those of us who loved him deal with his death perfectly:

"sometimes it's easy and sometimes it's hard. ...today it's the latter."

He is the only person that I've ever been that close to that died young. Well, there are only a few people that I've been that close to, so that statement doesn't mean much, but you get the idea. Before his death I'd never really had to cope with the crippling, overwhelming feelings that come with the death of someone you really love. I spent a week in shock. I didn't even break down and cry until his funeral made it really real. I was sad, but I was really angry and guilty about being angry so I didn't really feel like I could talk to anyone about it. Everyone was sad, reminiscing about all of the good times they'd had with him, so many of which involved drugs. Those times just made me more upset. I also had such a different point of view on who he was. I'd lived with him for a year and a half. I'd been dating him or talking to him daily since I was seventeen. I knew the hope and dreams, the soft side, the Sunday morning pancakes side. So many people had been his friend, but so few of them even came close to knowing the Colin that I loved; how could I possibly relate to the stories that they told about him, the feelings that they had. I did, however, take comfort in the number of people regaling fond memories of him at the wake and the love for him that I saw all around me. Crying was good. Time was better.

Over the last three years I've spent a lot of time thinking about him and working through what I felt about him and what I feel about him. BF actually helped me figure out a lot of it, helped to make more of my days the easy ones rather than the hard.

But September eleventh will never be easy and it has nothing to do with airplanes or terrorists. It's a hard day, but it's a bittersweet day. It confirms for me that he will always be with me. I've had enough time to reflect on our entire relationship and see it for what it was. I can honestly say he was the first person I ever loved and that I never stopped and don't think I ever will. And I know that he loved me too...that it was really hard and really complicated, but he really saw me and really loved me. It feels good to be able to look back and see what was often hard to see from the inside. Today gives me an excuse to reflect on all of that again and even though it hurts, it's also an incredible release.

I think it's good to think about him - not just today, because I think of him often. I wish I could say it was still everyday, but I guess it's good that my life has gone on and given me enough to think about that he can take a healthy place in my mind. That I can still think of him often, but not be so conflicted about him that it's always there.

I'm so sorry that he had to go through so many things in his life and his death is, unfortunately, like a capstone for those feelings. I regret that he was unappreciated and misused by the people that were supposed to love him for so long that by the time we got to him there was just too much stacked against him for us to prove to him that he was better than what they mae him think he was, or wasn't. I regret that I wasn't enough to keep him from taking the path that he did.

I don't know if I'll ever be able to work through some of my feelings; the anger with him, with his mom and step dad, with myself for not being able to do anything, with him for being so damn stupid. Talking to him the week before he died about how badly he wanted to come home and get his shit straight, get school started, have a normal life and kick the coke addiction; it'll stay with me forever. Was it his way of asking for help? Was there anything I could have done? Then or anytime in those four years? I can deal with sad. I'm good at dealing with disappointment and all of those "I wish he was here" feelings. I've lost enough in my life so far to be able to accept loss pretty easily. Three years has given me plenty of time and opportunity to understand and deal with my sadness that he is gone. It's the other feelings that haunt me.

I miss him. I'm mad at him for not being here, for wasting such potential. But I love the memories that I have of him. I can still feel him and smell him and call up his face and his voice whenever I want to. It's that ability that makes so many days easy. It's also that ability that makes today bearable, not overcome with the regret, anger, and disappointment. But damn, it's still hard.

ARGH!

I just need a freaking IUD!

Today was my second visit to a gynecologist in two months. Not because I've got any "women's issues", but because I'm on a tetragenic drug that is so bad for a fetus/embryo that it has a special administration program associated with it that requires me to use two methods of birth control.

Now, I'm already on Depo-Provera. It was my last option after I had my pulmonary embuli back on '03. Estrogen can cause blood clots and we don't want to go increasing my risk of developing one when I've already got so many other things that could. So most hormonal forms of bc are out because practically all of them contain some form of estrogen, but I had to be on something because the blood thinner is also tetragenic. Depo is estrogen-free and therefore, okay for me to use, marginally. It still isn't the best thing to be using when you're taking prednisone because both can cause bone loss - so I have to take lots of calcium and vitamin D and a great new drug that I get infused via IV at my doctor's office once a year (even with all of this, I still have osteopenia, the stage of bone loss before full blown osteoporosis).

So up until the PAH diagnosis and treatment, I had the birth control thing all worked out. Now I need a second form that doesn't interfere with any of my drugs and won't cause blood clots. I'm just not a "barrier method" girl. First of all, I don't trust them. The failure rate of every single barrier-method form of bc is far from what I would find acceptable. Second, they're icky. Yeah, I said icky and yeah, I know that's silly, but I just can't deal with spermicide or used condoms or any of that icky stuff. I need another form of birth control that is hormonal, but acceptable.

Now I mentioned to both of my pulmonologists and my rheumatologist that I wanted to go on Mirena to fulfill the requirements of this drug program. None of them even raised an eyebrow. The level of hormones in the IUD is so low and the risk of forming a clot with my anticoagulant level where it's supposed to be that they have no problem with it. Finding a gynecologist that understands my medical situation and is comfortable enough with it to actually prescribe and administer the IUD is another story. And that is why I spent the whole afternoon driving to Northeast Philly only to be told for the second time that the doctor feels that my medical profile is just too complicated for them to prescribe Mirena and they think that I should go with ParaGuard because it has no hormones and won't interact with anything. And that would be fine, I would try it out even though it carries a higher risk of increased bleeding and longer more painful periods. Hell, I might not even get any of the side effects because I'm already on the Depo; HOWEVER! my health insurance will not pay the six hundred dollars that the ParaGuard goes for. I'm unemployed, have been for a year, wasn't even making a substantial income before that and don't anticipate anytime in the forseeable future that I will be earning any money. I don't have six hundred dollars lying around so that I can "try out" an IUD and see if it works for me. If I knew it was going to work, that this would be a great form of birth control for me for the next ten years, I could swing it. If three months go by and I'm having my period again and having a bad period like I used to before the pill and the Depo and we have to pull this thing out and start over, I can't swing it.

ARGH! Nothing can just be simple.

I'm going to try to get my pulmonologist to pull some strings at Temple Gyn and get me an appointment before the mid-November one they offered me over the phone. Hopefully the possibility of a pregnancy killing me will be enough to get them to squeeze a bit.

"Getting It."

[Ed.'s Note: Thanks for your comment Colleen. As I started to read it and respond, I found that I had far too much to say in the comments section about this corner of my life, so why not just make it a post and say what I really had to say. That said - I'm a pretty open person when it comes to disclosing personal information. BF, not so much. The idea of my discussing our lives on the internet is one that he's not really on board with, but it's more that he doesn't get why I need this outlet than his not wanting me to tell people about my (our) life. And of course he wouldn't tell me that I couldn't. Hell, his ex blogged about their relationship before and during our whole affair and the separation and divorce that followed; still does. But I digress (as usual); in the interest of respecting him and our relationship I've tried to keep the following post as honest as I can without sacrificing his need for some privacy.]

I really don't think that anyone who hasn't been there in some capacity, let alone this capacity can really "get it". They just have no reference point. I know that some people are just naturally sympathetic caretakers; love can seem to be the fuel that they run on. BF is a normal, well person - has been all of his life, hell, he went through Navy boot camp as a heavy kid right out of high school - but he's definitely not a nurturer. He's a sweet, giving, patient, generous, funny, sarcastic man and my other half; I love him more than anyone I've ever been with, but nurturing is not his bag.

I don't know if it's possible for him to understand the physical reality of what it's like to live like this, both never having had physical limitations that he couldn't control and knowing that he has had physical limitations that he could control. That he could just "suck up" and deal with it, however miserable it was. Boot Camp has made it into our discussions several times; eight weeks of hell, eight weeks of being broken down and pressed into a mold. I get it. It sucked. And he still has that "buck up, you can do it if you just try harder" attitude sometimes. Part of the ability to "buck up" is being able to see the end of that position of having to intentionally step into a role where you will just accept pain and physical exhaustion for a short period of time. It's something that I'm pretty good at on a short-term basis, but not for extended periods. I can make it through six weeks or so of the misery of forcing my body to be run ragged, but it's not sustainable and it ends up with either a hospitalization or being knocked out of commission for a month or two. But that's something that I do think that he should "get" because he's seen it happen. I was working full time at the school teaching, spending two evenings a week in my senior seminar, spending the other five nights a week preparing lessons, and still trying to be a good girlfriend and mom and it was just a bit more than two months after I had to drop student teaching that I was diagnosed with PAH. Months before we had planned a vacation to Playa Doradas in the Dominican Republic that there was no way we were going to miss unless I was bedridden or hospitalized. After we got back from an eight day stay where I spent almost half my time in the hotel room reading just because I was too exhausted to even get dressed and walk the thirty feet to the pool, my symptoms were so bad that I laid on the couch for another two weeks just recovering. My Skin Hurt. My Joints Hurt. I was Exhausted beyond anything I'd ever experienced. Oh and then I was hospitalized and diagnosed with PAH and scleroderma. So he's seen the worst, I just don't know if he's put it all together in his head like that, if he understands the clinical causation. But he's also seen it happen when I just push too hard for a three-day vacation, trying to squeeze all of the time and activities that a normal person would get to experience out of it. So he's seen it. He's seen that I have the capacity to push myself for some special event and that I'll pay for it if I do. He still resents the fact that I'll push myself (to the point of actually wearing my first pair of heels and playing quite the guest-of-honor) for my graduation party, or a holiday get-together, but that I can't do that on a daily basis in smaller doses to keep the house clean. Part of me understands that feeling on his part, but I do a lot more than he gives me credit for and I'm trying to do more (Anti-Depressants! Who Knew!). Part of me wants to scream (and sometimes does) that I don't want to be out of commission every other day because I pushed too hard the previous day for something like folding laundry.

Another thing that I do know that is that whether or not he can understand the physical and emotion strain that I'm under, he can come to understand me and trust me. Trust that I'm honest about my symptoms and my abilities on a day to day basis, that I really would rather be a well, productive member of society and this household, that the physical ramifications of taking all of these drugs, living a life devoid of the socialization that I need, worrying about my health, my future, my family, and the frustration that comes from it all take their toll and can mean that I'm not always going to be a pleasant person and it's not something I can control as well as I could if I wasn't dealing with so much constant emotional crap. And he knows that if he wants to continue our relationship on a more permanent basis (which he says he does) that he is going to have to accept these things as truth whether he "gets" it or not. We're just still working to get to that place. The place where he doesn't resent me, feel abandoned, feel that I'm disinterested feel used, and where I don't feel like he's being selfish and unsympathetic.

Mind you, it's a good solid relationship. Has been from day one. It was like someone stuck two magnets just the right distance from one another and the universe did the rest. Those are just the bad days, or hours, or minutes. We're focused on communication and nurturing what we have. Just as any relationship takes work and attentiveness, ours is going to take that and then some. We've been solidly working our way up the relational hierarchy to a place where we're starting to communicate much more openly and honestly about how we both feel and get what's underneath all that crap you put up to hide the parts of you that you don't want to have seen in the start of a relationship.

I did make him read "The Spoon Theory" and I often use the analogy in our talks, especially when he's frustrated with the lack of "spoons" that I have left over at the end of the day for him; it definitely helps. [Anyone who hasn't, read it. There's a link on the sidebar and whether you're sick, have people that you love who are sick, or are just looking for some insight into what it's like, this is a really good essay that has both touched and helped everyone I know that has read it.] We've also been reading some good books, both from the caretaker and patient perspective, and they seem to be helping both of us see what the other is going through more clearly. I tend to overreact to anything that I feel is an attack because of the illness, or to his lack of desire to get into "what's really wrong" (see also: avoidance, withdrawal, emotional unresponsiveness). And I can go from two to ten in a very short time if I feel like we have an issue to deal with and he's refusing to communicate with me. It helps to know that I do that. It also helps him to know that I will do that. And books like "Beyond Chaos" help us both to handle those situations, hell, life in general, in a more productive, engaging, loving way.

I'd love some suggestions of relevant books; most of the books that I've read are either too much about the disease itself (clinical, cold) or try to make generalizations about "living with chronic illness". As if "chronic illness" was a diagnosis. They might get the chance to touch on all of the autoimmune diseases, or the most prevalent ones, but they're too broadly sweeping. I also find that most don't give practical life advice for what to do about the earthquake that has taken over your life. What to do about work, family, relationships, sex, friends, ya know? Life. Especially for someone in their 20's like me who isn't inside of an established career/family framework and needs more help on how to put those things together, than how to keep them going. Which is really the most critical thing that I need because the blocks that I've been building my life with for so many years, that I imagined were stable, have come toppling down on my head and I have to rebuild my hopes and plans about things that I thought were set long ago, like my teaching career or motherhood, really, my path through life. It would definitely help to have a manual of some kind, or even just a tourists guide.

But I have found some relatable personal essays and such that have at least given me a window into how other people do it and that we aren't the only ones who struggle at it. We aren't the only ones who haven't gotten it right the first, second, third, or twenty-second time we tried. It's strangely hopeful to not be the only ones struggling, to not have to look around and say, "Why are we the only people who can't seem to get this right?”

It's a Job.

So I'm rapidly learning that this whole "sick" thing is pretty much a full time job in and of itself.  I spend the entire day today on the phone scheduling appointments; getting documents notarized to maintain my health insurance; talking to the health insurance company; rescheduling appointments; getting documents faxed from one doc to another or to the blood letting depot that I seem to visit at least once a week.  Five o'clock rolls around and I'm disappointed because I can't get in touch with anyone anymore.  This is sad.  And tense.  

Then I got to spend a good hour on the phone with the customer service department of my satellite tv provider.  They're assholes.  It's just that simple.  They lie constantly, no one seems to have real authority, and their policies are virtually non-existent.  When I signed up with them I bought a package that required an 18-month contract, but also included a $30 a month rebate for ten of the eighteen months.  Of course the form for the rebate didn't show up with my bill until two months after I signed up and the rebate expired a month later.  I sent it out, promptly, but neglected to include some number from my account id and the rebate was returned to me with instructions to correct and return it...Two Months Later.  I fixed it and returned it, but it was past the expiration date and the satellite service just ignored the whole thing.  I had some really ridiculous billing issues with them in the first six months of our contract, so I didn't even broach the rebate issue until early this year.  The first, second, and third time I contacted them I just hit a wall.  They told me that I hadn't turned in the rebate form in time (even though they had sent it back to me with NO TIME to return it appropriately) and that there was nothing that they could do.  Each of these times I didn't have time to sit on the phone and go up each rung of the ladder for an hour and a half, so I had to let the issue drop.  In May, I finally got the time to sit and argue my way to someone who could actually do something, and this pleasant woman assured me that I would be receiving the full rebate applied to my bill for the next ten months.  Very Nice.  I thought I was done with their ridiculous billing and would finally be paying the price I'd agreed to pay in April 2007 when I signed up for the service.

Apparently she was a big fat liar.  They gave me the rebate...For Four Months.  Last month they billed me the full amount again.  Grrr... So today I got on the phone and explained my situation to like six different people, some of which told me that there was nothing they could do, some of which told me that I could have the rebate and a credit for last month applied to my next six bills; that doesn't really help much though because their customer service is so horrific that there is no way that I'm renewing my contract in October when it expires, so I won't have six more bills to apply the credit to.  The final guy that I talked to, when I told the six-more-months guy that I wanted to talk to someone who had the authority to actually just credit my damn account (or return my money to the freaking credit card) for the missing rebates, completely reversed the previous position and told me that on the call with the pleasant woman who promised me my money, she had told me that I was going to get three months of the rebate - as a courtesy.  But they gave me four months?  No.  She promised me my damn money and they record those calls.  So I told him I'd agree to give them two weeks to find the recording and get me my money back or I was putting a stop on the credit card payments for both August and September and take them to small claims court.  He didn't have much to say at that point; he agreed to investigate it and we left it at that.  I really hope he doesn't think that these are just idle threats.  I'm a real bitch at the moment and I'm not up for taking anybody's shit, especially this company's.  They've lied to me and given me the run around on a number of issues and made me miserable to myself and to those around me (poor BF).

So that was my fun day.  My health insurance still isn't active so I can't schedule half of the testing that I'm supposed to be have ASAP.  I want this crap done so that I can have the doctors at the Temple Lung Center report the results to SSDI and I can finally get the damn thing approved (not to mention the medical decisions that will be made based on my new chest CT, pulmonary function tests, blood gases, new six-minute walk test, and a meeting with a great gastroenterologist).  I also managed to get a meeting with someone at the Disability Services office at Temple U., so maybe I'll have some momentum toward getting certified to teach.  It really is a full time job.  Getting all of this bullshit scheduled this week and then going to all of the appointments over the next two weeks or so, talking to Social Security, talking to DARS at Temple, getting them the appropriate paper work and approvals.  

So I've stopped with the job search for now.  I figure that I'll be a shitty employee anyway and won't possibly be able to actually hold on to a job; I'm just going to wait until we know all of the info about the PAH, and the pulmonary fibrosis, and the mixed connective tissue disease.  So at some point in the next six months I should hopefully be on more knowledgable ground regarding my own body and be more in control of it and it's ability to work, or perhaps even student teach, though I still don't think I'll ever be able to work 7-3 five days a week, but we'll see what Temple's Disability Office can do for me before I rule that one out.  

It's weird to make the decision to make no decisions.  To just put life on hold.  It's incredibly stressful on my relationship with BF.  We've been having little ridiculous fights interspersed with deep talks about our future.  It's so hard to try to plan a future when you have no idea what the future holds.  And it's hard to work out this household crap still...the basic relationship crap...chores, sex, responsibility, getting our place running smoothly while I can't do more than ten minutes of housework without my heart rate shooting up into the 140's and my pulse o2 dropping into the 80's.  It sucks.  He hates that I can't just pick up the slack, I hate that he can't understand why I can't pick up the slack without resenting the hell out of me.  There's clean, folded laundry on every piece of furniture in our living room; the kitchen floor needs to be mopped; the coffee table is covered in crap that just doesn't have a home; the bathroom needs to be cleaned; we still haven't gotten all of the boxes unpacked from when we moved in here a year and a half ago.  It's frustrating.  Really Frustrating.  For both of us.  And I understand where he's coming from; I wouldn't want to come home from work to someone who has been home all day and see this. But we still have those nice long talks about buying a house, getting married, remodeling a house, having a child, which doesn't go very far, but when you make the decision to make no decisions then you really can't ask your partner to hypothesize about your future on a regular basis.  So I guess what I'm really saying is that I'm in a holding pattern.  I hope and pray that everything works out and I really think that they will...but getting through this holding pattern is just so hard.  I feel useless.  I feel like I've got nothing to offer.  It sucks, but there's hope.  And it is so definitely a full time job; even if I didn't have to deal with all of the doctors visits and assorted tasks that revolve around "SICK", I would still have to deal with the emotional roller coaster that comes along with not having any idea what life is going to be like in six months or a year or tomorrow for that matter.  

Geez I hate these bitchy posts.  I'm not miserable, but the good parts of my life are like a break from the stressful parts, so there's much less to write about.  We have great long visits and dinner with my dad and stepmom and the kids every feasible Sunday night.  I love them.  We spend the evening with BF's mom every Monday (or almost every Monday) and I really enjoy the time that we spend with her.  I read like a crazy person.  I sit around with my mom and BF whenever the mood strikes us and we all get along so well it's almost surreal.  I have joy.  The stress just seems to constantly overwhelm the joy.  That's what the ativan is for I guess...though I've been using it only very rarely, when things get overwhelming, when I feel like crawling into a hole and disappearing for...well at the time it usually feels like forever.

So thanks for reading.  I know I'm no fun right now.  I know that it must sound like I'm a spoiled child who just bitches and bitches and can't focus on the happiness in her life.  I'm really a generally pleasant person in reality; I'm excellent at putting on a happy face.  This is just my space to get it all out.  

[And I nearly forgot to mention how utterly enthused I am about my impending sibling!  A. is due in thirteen days, but has never gone to term so we're expecting a baby in the next week.  I really can't wait.  I am so happy about this baby now and I can't imagine how incredibly elated I'm going to be once I get to hold that tiny little person, cuddle it, sing to it, spend as much time as my dad and A. and BF will stand with it.  I have joy, I am far from miserable.  I just have to make that my mantra.]