Trying to Keep My Chin Up.

I wish that I had more to say lately, but life has gotten awfully boring.  Being constantly sick doesn't make for a very active lifestyle.  I've had a cold that keeps coming and going for more than two months now and I'm getting really tired of it.  I've been getting migraine headaches nearly every day either because of the sinus pressure or the blood pressure medication that I'm on to get rid of the tachycardia that I was having over the summer.  I hate migraines.  I've been getting them since I was a little girl and from time to time I go through spells where they're especially bad; they leave me unable to do anything.  I find myself anxiously waiting for a time when it will be acceptable to go back to sleep as that's the only thing I can do that doesn't exacerbate the headaches.  And since I've been on the Imuran, a strong immunosupressive drug, I've been getting increasingly fatigued, sleeping up to 14 or 15 hours a day and still having no energy when I'm awake.  

I feel terrible that BF has to go through this crap with me.  I'm no fun.  I'm rarely up for going out.  In the last two weeks we've spent two evenings hanging out at my dad's house and another shopping at Target for a few hours (where I get to feel like I'm 80 years old riding around in one of those electric chairs).  I try to be there for him as much as I can emotionally to try to make up for what I can't do and where I can't go and lately we've been communicating a lot better, which certainly makes things easier than keeping everything bottled up.  I just hope something happens soon to alleviate some of this stress.  We love each other to death and thank god for that because I'm sure we wouldn't have lasted and wouldn't have a hope for a future if we didn't, but we're both extremely committed to making our relationship work and so far that commitment and our mutual adoration has made it possible for us to work through the rough spots.  

I just wish that I could be the person that I want to be.  I want to be his partner, but even my everything doesn't come close to half of this relationship, or the rent, or the housework.  I want to be a fun parent,  but I can't get up and down off of the floor or pick him up or walk down the street to the park.  I want to have a life and career of my own, but committing to be anywhere but my couch isn't something I can do right now.  I can't have a schedule, I can't guarantee the use of my hands or that I won't have a migraine or that I won't be out of commission for one of a thousand other reasons.  I feel useless and that's depressing which only compounds the feelings of uselessness.  Boredom feeds into that a good deal.  With nothing to do I have plenty of time to sit around and think about what I wish was different.  I can't keep up with the hours of reading, surfing the internet, tv, and movies for much longer without something changing.

But at the same time there's a good deal of change on the horizon, I just have to be patient for a bit longer.   My disability still hasn't come through, but I haven't gotten a "no" either, just a request for more information.  The money will really help, especially with the economy being so crappy.  There have been tons of layoffs at BFs job recently and though his job is secure for as long as the company is around, he won't be getting a much-deserved, much-needed raise anytime soon, so as soon as I can start pulling in some money we'll be in better shape financially.  I got the results of my pulmonary function tests back, which will determine my eligibility for the stem cell transplant, and they seem to be in the right range to be eligible; I'm using 79% of normal lung capacity and 77% of the oxygen that I take in is getting into my bloodstream.  The numbers needed to be less than 80 but more than 60, so I'm going to see a rheumatologist at Jefferson University Hospital to get things moving and hopefully it'll happen early next year.  I'm also seeing a new psychologist this week who specializes in patients with chronic illnesses, so hopefully talking to her will help and maybe she'll fiddle around with my antidepressants and anxiety meds a bit to see if that helps.  So I suppose I just have to wait and be content that things might be changing soon and until then just try to keep my head up and remember that I'm not just lazy and I'm not making all of this up, that I am legitimately ill and I'm doing what I can to live as full a life as I'm able to.  It's just hard when you have an illness that no one can see and it's often difficult to not think that I must just be crazy...

They Grow Up So Fast!

My little sister will be a whole two months old next week.  She's becoming quite the adorable little thing.  She's still nocturnal, but the reflux that was causing both her and her parents such misery, seems to be getting better.  It was so sad; if she wasn't eating or sleeping, she was crying from the pain.  Now she's bright eyed and smiling and there's that wonderful alertness now that she follows people and objects with her eyes.  Also, she's sitting up with help and starting to try to stand.  She loves to just sit and watch the whole family and it's so cute to watch my dad with her, she adores him.My step-mom's such a sweetheart; she lets me keep Bella to myself the whole time we're at their house and she's there to take her when she gets too fussy.

And then there's the little man... Precocious would be a nice change at this point.  

When he hadn't gone through the "terrible twos" by his third birthday, I thought that perhaps we'd been blessed.  Recently, though, I've been learning that like every other stage, every child get there in their own time.  For the last few months he has been getting increasingly difficult.  It started with the whining and then bursting into tears whenever things didn't go exactly the way he wanted them, but now it's reached outright defiance, argumentativeness, and this ear-piercing scream, as if he were in mortal danger.  The scream really drives me nuts.  We're having some success just ignoring it and making him do whatever it is we wanted him to do that provoked the scream in the first place, but it's one of the hardest things I've ever had to do to try to keep a straight face and a calm voice while he uses every ounce of breath he can muster to create the most agitating, high pitched scream I've ever encountered.  Yesterday he screamed for a good fifteen minutes after I put him down for his nap because he wanted to watch more cartoons.  I really don't understand how he keeps it up; it can't be fun and it gets him nowhere and it has to hurt his throat.  He's a joy when you're not trying to get him to do something he doesn't want to do, like eat his breakfast before digging into the candy corn.  He's sweet and cuddly and generous with "I love you" and hugs and kisses.  Which is why it's so difficult to comprehend why our sweet little boy has put on this bratty, smart-assed attitude.  He's testing us, I know, and I hope we're passing.  I hope that time outs and negative reinforcement will get rid of this nasty side and that positive reinforcement will show him that we're really much more fun when he isn't screaming...  

A Mixed Bag

Last night was the first time that I have been able to vote for a presidential nominee.  That's not to say that this was the first presidential election that I voted in. I turned eighteen and registered to vote in 2002 and I voted for John Kerry in 2004, but I never felt like I wanted Kerry to be president, I just couldn't stand the thought of four more years of Bush.  I would've voted for anyone who would get him out of office and it broke my heart to feel that hopeless about our government.  It goes against everything that I love about the United States and our history to vote for the lesser of two evils, to choose mediocrity over stupidity.

This year I was thankful to be able to be genuinely excited to vote.  Not only because we were nearly certain about the outcome of last nights presidential race before the polls even opened, but because I was truly inspired.  This time it felt different, it felt like a change in history, a change in the direction of our nation's policies instead of simply a changing of the guard.  I am glad that John McCain wasn't elected, but I am so much more excited that Barack Obama was.  I hope with every ounce of my history geek soul that he will fulfill his potential and lead this country back to the greatness that it once had.  I love to hear him speak, I love the way he is honest with us, the way he tells us straight out that we have to change, that government can't do it all for us. 

Unfortunately, my joy at the results of the presidential election was tempered by my disappointment at the results of the state ballot propositions.  It amazed me that Americans could rise above their bigotry when it came to electing an African American to the presidency, but then in the same evening, could ban gay marriage in two states and adoption by gay couples in another.  What is it about homosexuality that scares people so badly?  It's ridiculous.  Marriage hasn't been a purely religious sacrament in a very long time.  When I marry, it won't be a Christian marriage, but a secular one, with a myriad of secular benefits to accompany it.  If I can openly say I don't believe in god and still be "married", if a murderer, a "sinner" can be "married", and we can still get the same recognition under the law as a couple who live by the word of the Bible and see marriage as a sacrament, then why can't homosexuals share those rights?  Why does my disbelief not offend as greatly as homosexuality?  I openly admit that mine is a choice, there's is not.  If my marriage would do nothing to break down the sanctity of marriage, if divorce is legal and by definition breaks the sanctity of marriage, then how on earth can anyone say that homosexual marriage would harm the nature of heterosexual marriage?  Why can't we allow each relationship to stand on it's own integrity and stop judging one another?  Isn't that the central message of Christianity, to love one another and leave the judgement to god?  It makes me sick and sad that we can't move forward in one area without moving backward in another.

On the brighter side, I was happy to see that the end run around abortion rights that would define human life as beginning at fertilization was defeated in Colorado and the attempt to bring back the abortion bans in South Dakota was also defeated.  I was also happy to see that the country is still making positive strides toward the legalization of marijuana, with the approval of medical marijuana in Michigan and decriminalization in Massachusetts.  Not that I'm naive enough to think that pot does no harm, I've seen its ill effects firsthand. I just don't think that people should be criminals for something that's a personal problem.  If it were treated like alcohol and made a crime only when it's use posed a treat to others, we would have a new, highly profitable, highly taxable American industry, rather than a drain on our tax dollars when we have to pay to try and house prisoners who are found guilty of simple possession.

Okay, enough of the political stuff.  On to the change we hope for.

And the Category is...

Potpourri.

Yeah, I'm a Jeopardy geek.

Anyway, sorry it's been so long since I've checked in.  I was sick for a month and without internet access (besides my iPhone) due to a glitch between when the old service was disconnected and the new service hooked up.  But I can't say that there was a whole lot to write about that I didn't get to fill you folks in on; it's been relatively boring around here.  picking and carving pumpkins, sponge painting pictures of the gorgeous fall leaves, watching copious hours of House (I'm now an official addict; a state that becomes official when you start having conversations about the lead character as if he actually were a person), watching the Phillies finally make good on their World Series dreams, and researching the hell out of stem cell transplants.

I don't usually watch baseball, but I've got a big soft spot in my heart for the sport, and our home team especially.  My grandfather loved baseball and for the four years that I lived with him before his death from Parkinson's disease, he watched every single Phillies game.  He almost got to play pro-ball, made it all the way up to the local AAA team, but first WWII and then a growing family made it a rather impractical career choice.  I don't know how many people know about this, but many baseball players that enlisted during WWII were sent to Hawaii for a bit of extended Spring Training.  After his brother was killed in the war, my grandfather enlisted to avenge his brother's death, only to find himself being sent to Hawaii to play ball with the greats.  The only shot he fired during that war hit a cow that they had mistaken for a Japanese spy.  So baseball gives me warm and fuzzy feelings.  I wish that I had gotten to know him better, but I know how excited he would be to be sitting here watching the Phillies playing such excellent ball, only minutes away from winning their first World Championship in twenty-eight years.   But enough of the tear jerker reminiscing stuff...

I had a really great weekend this weekend.  Sunday was the 17th Annual Lupus Loop for the Tri-State Chapter of the Lupus Foundation of America.  I didn't walk it, but at least four of my awesome family members pushed my wheelchair through Fairmount Park on a beautiful morning.  It was so great to have so many of them show up; my mom and dad were both there, as were my brother, BF and the little man, step-mom and all of the kids, my uncle, two cousins from my mom's side, and two from my dad's side that I rarely ever see, but really enjoy when I do.  Oh and my oldest cousin brought her fiancee, who is really a great guy, and their five year old daughter.  It was so great to have so many people that I care about and who care for me there and afterward most of us went back to my mom's for lunch and just got to hang out and visit for a while.  It was really enjoyable, even though I was exhausted by 3pm and went home and slept from 4 til 7pm.  

I also got to stop in to my old job today.  They were doing flu shots for employees, their spouses, and kids, and BF still works there, so we got the little man a flu shot and a tour of "where daddy works" that he has been aching for for almost a year now.  It was nice to see some of my former colleagues.  It's been two years since I worked there and so many people are gone, it was odd, but so familiar.  As I've said before, I'm sure, I was fired, but it was really the best move for both me and the company, my poor health on top of a full-time job was really putting me in a pinch with school and I can only juggle so many balls at once.

But hopefully I'll be leaving one of those balls behind in the upcoming months; I'm pushing hard for a stem cell transplant.  I see my PH specialist tomorrow where we'll discuss the results of my pulmonary function tests and whether she wants to move me from Imuran for immunosuppression to Cytoxan.  If she wants to use Cytoxan and my lung function is within the eligible range, I'm going to advocate as hard as possible for the more extreme treatment.  The way I look at it, if I'm going to need to be on Cytoxan then I would rather be on a high dose and very sick for a short time and have a cure or extreme improvement than take a low dose over a long period of time that will leave me open to every infection that comes along and still not be a possible cure.  I'm too young for this.  There is a definite chance with stem cells that at some point I will relapse and my immune system will go haywire again, but I really just need a few years to get my life on track; five, ten, fifteen would be nice, twenty would be a dream, but I really just need enough time to get my career on track and to get my family on track.  I still wouldn't be able to become pregnant because that could trigger a relapse, but I could do the surrogacy thing and be confident that I could be there to care for the child rather than always being sick.  I know I'm putting the cart before the horse, but hope and dreams are all I really have right now.  I've been feeling pretty awful.  I had a sinus infection and a GI infection at the same time and then had an allergic reaction to the antibiotic I was taking.  It's taking forever for me to get an answer from disability.  My house is a mess; we have so much crap that's just taking over.  So all I can do right now is dream about what life could be like if I can have the transplant and if it works.  The best case scenario hasn't ever seemed this good.  Before I got PH I wasn't in the category of patients with life threatening complications so I wasn't in the group that was eligible for the transplant, which is the only real possibility of a cure that's available.  So it's odd that it took this horrible illness to get me to a place where I have the hope of being well again...and it's pretty awesome.

Well, the Phillies just won and I think I'll end it on a high note for tonight.  I promise I'll be getting back to my normal yappy self now that I'm back online.

Bella

Sweetness!

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.