Not So Silent Night

It really sucks that no matter what a little brat the little man is, "Santa doesn't bring presents to boys who don't behave!" is such an obviously empty threat.  He totally doesn't buy it.  Maybe it's because we don't really build up the whole Santa-myth.  Maybe it's because he's three.  He seems to think being three explains everything - Why did you kick the cat? Because I'm three. - perhaps he's right and next year Santa will have some power over his behavior.  Perhaps next year he will just magically be over this I'm-going-to-argue-with-everything-you-say attitude.  He's driving his father and me nuts.  The level of disagreeability just keeps going up.  Last night he screamed "NO!" for a good ten minutes because he wanted to write in the condensation on a window of my dad's house; the problem being that the condensation was on the inside of the glass.  Such matters of physical reality do not matter to this child however; he just wanted to write on the damn window.  Grrr...

Either way he's still getting presents on Christmas because neither of us is enough of a hard ass to revoke a whole day.  

Thankfully, our Christmas family-juggling is finally worked out.  We have the little man all day tomorrow; we're spending the first half of the day with BF's mom, the second half with my mom, her BF, and my brother, then taking him to his mom's so that he can wake up there Christmas morning.  And while he's opening presents at his mom's, we'll be at my dad & A.'s opening presents with my brother and my step-siblings and then - and I am so proud of this part - I actually worked a two hour nap into the schedule before BF and I head over to his mom's for dinner.  Then we get a couple days to relax before we go to Disney on Ice next Saturday (a very generous gift from BF's friend/boss and his girlfriend) and then we'll be getting together with Dad & A. (and the kids) to do dinner early next week and have them do presents with the little man.  So hopefully things will go smoothly; I'm going to try my hardest to keep my anxiety under control (utilizing my Ativan Rx as necessary) and to not let anything get to me.  If BF and I both get stressed and snappy things get rather unpleasant, but if one of us can keep it under control we can usually talk the other off the ledge.

Oh and two great big Christmas presents for me from the universe; one very dear friend will be coming home for good after a two year tour of duty in Iraq and another will be coming home from Austin.  I miss them both a whole lot and I can't wait to see them again.  

I hope all of you are getting to enjoy the holidays with your friends and family, whether they be Christian, Jewish, or otherwise affiliated (or unaffiliated, as I am).  I'll be checking in again before New Years with something less current events...you know, all of that looking forward, looking back stuff.  I think we all get a little reflective this time of the year and this has been quite a year to reflect on.  And gasp I've actually been keeping up with this blog for more than a year now so I even get to reflect on my reflections...Sounds like a lot of work now that I put it in writing.

Merry Christmas, Happy Hanukkah, or have a good Thursday - choose your flavor!


Some days...

Some days I just can't manage to keep it together.

Some days I feel like I'm drowning.  Trying my hardest to fight back an onslaught on tears that wouldn't accomplish anything.  

I'm alone.  No one gets it.  There's no one who can hold me and tell me that everything's going to be okay because it won't.  The words would be about as effective as my tears.  

I want answers.  I want my life back.  I want my friends back.  I don't know how to go on living like this.  

I crave some sense of purpose with every ounce of my being.  I can't stand the feelings of uselessness, of nothingness.  

And it just keeps running through my head that it's unfair.  Really fucking unfair.  That I never got a chance to be who I was becoming before this...this thing...took over, derailing my life.  Derailing Me.  I don't know who this new person is.  I don't know what she's supposed to do with her life or what her reason for being is.

I know how pointless it is to rage against the intangibly unfair.  I know that it doesn't do one damned bit of good.  I just don't know what I could be doing differently.

I can't exist to sit on the couch, watch tv, re-read the same books...

I need more.  I need a reason to wake up.  I feel like I'm desperately clinging to the few threads of my life that remain.  I'm scrambling in a desperate attempt to keep it together.  

I can't live like this.


Shaken to My Foundations

Saw a new rheumatologist yesterday.  It was the most time I've spent in one room with a doctor...ever.  She's starting from scratch and refusing to make a diagnosis based on past lab tests.  I like her already.

She's re-running all of the markers for SLE, scleroderma, and polymyositis.  She also referred me to a dermatologist for a vasculitis evaluation and having me get a high-resolution chest CT.  All of this is totally awesome...and scary.  It's almost as strange a feeling to have so many of your past assumptions shaken as to be diagnosed in the first place.  And I feel like I know so very little all of the sudden, as a result I'm putting myself through the curse of the e-medicine age - self diagnosis.  Going from the suggestion of vasculitis being the culprit I began comparing the symptoms of the different forms of vasculitis to the symptoms that I have.  The major problem being that I have so many symptoms that have all evolved over the last seven years.

As a "House, M.D." addict, I've heard him chastise his team of doctors numerous times for suggesting multiple diagnoses for people with diverging sets of symptoms.  Somehow I never thought to apply this to my own symptoms.  I have at least three separate diagnoses and additional symptoms that don't match any of them.  So when this new doctor suggested that from what she was seeing she couldn't diagnose me with any of my prior diagnoses, it took me a little while to wrap my head around it, but it soon made sense.  Why would the diagnoses I'd been given be unable to explain so many of my symptoms?  Wouldn't it make more sense for there to be a single unifying illness causing all of them?  Does it even make any statistical sense for me to have fibromyalgia, SLE, scleroderma, PAH and still have a handful of unexplained symptoms?  It doesn't seem right to me.  Such a small percentage of people get each of these diseases individually, for me to get all four consecutively, within the same short span of years seems like it would take some pretty incredibly bad luck.
So I started searching, finding plenty of diseases that don't cover all of my symptoms, but cover many.  Mixed connective tissue disease seems to be the most likely diagnosis that could come out of this, but it was the indications of vasculitis that the doctor had seem that intrigued me, specifically Wegener's Granulomatosis.  This has been the one disease that I've found for which I fit all of the symptomatic criteria, with the exception of kidney and eye involvement, without discounting all but my GI symptoms, which could just be a result of years of over medication.  It would explain my PAH, joint pain, muscle weakness, incessant fatigue, and even the ongoing bout sinusitis that has lasted for the whole of this last year.  So we'll see.  I don't want to jump to any conclusions without some tests to back them up, but hopefully by next month I'll know a bit more and maybe even start a treatment that will help something. 


Just My Luck

So today I realized that I'm about a month overdue for my pneumonia vaccine, about four hours after being diagnosed with pneumonia.

The head cold from last week had become a wonderful croupy cough by the end of the week.  I started getting croup when I was an infant; I spend a tremendous amount of time during my childhood sitting in the bathroom with one of my parents at 4:00 am with the shower on as hot as it could get trying to breathe.  It's one of those" childhood illnesses" that are supposed to go away as you leave childhood - but as usual, my body didn't get the message in a timely matter; my last real bought of croup was my senior year of high school.  I usually didn't get any symptoms besides a cough that made me sound like a barking seal, but that was plenty as I got stared at constantly in school, sent to the nurses office over and over again against my protests that I was fine and it was just a bad cough, and then of course there's the abdominal pain that accompanies several days of coughing with your whole body.  I really hope that my children have better health than I did; I can't imagine what my parents had to go through having a child that was ill so often.

So it wasn't croup, but for the better part of the day I was having coughing fits that sounded pretty close to the croup cough and bringing up a lot of gunk from my lungs.  Then this morning I woke myself up with a coughing fit that felt like I was drowning in said gunk.  Then I was short of breath, with very little relief from the 3L of oxygen I was breathing.  So I finally gave in and went to the hospital.  I constantly waver back and forth when I feel like I might need to go in, but at the same time I could just have a bad cold that will go away on its own.  I finally broke down and decided that it was at least worth a chest x-ray. 

So I went to the ER.  Luckily, business was light and I was in a bed within about ten minutes and before the hour was up I had had a nebulizer treatment and an x-ray.  The nebulizer helped a lot; it got my SpO2 up to 100% for the first time that I can remember.  My chest x-ray wasn't good, but the pneumonia isn't bad, so they sent me home with an albuterol inhaler, an antibiotic, and a bottle of cough syrup with codeine.  As much as I hate the hospital, sometimes it's really nice to be reassured that it's not all in my head, that I'm not a hypochondriac, that it really is that bad.  So hopefully it's not viral and the antibiotic will clear it up, otherwise I'm in for some serious hell.  The last time I had a viral pneumonia was about six months after I was diagnosed with lupus and I had to sleep in a recliner for three months so that I could breathe and had to have my lung re-inflated at one point.  I can't go through that hell again.  I don't think my lungs could handle it, and I might just go crazy.  So I'm going to stay warm. well rested,well hydrated and keep my fingers crossed and hopefully this time next week things will be looking up.

Oh and on the autoimmune side of things, I'm seeing a new rheumatologist at Jefferson University Hospital next Thursday so that I can start the testing to determine whether or not I'm a candidate for the stem cell transplant.  Very Exciting!

And I'm actually attending my first adult Thanksgiving dinner this week!  I've never spent the day without my family, but this year we don't have the little man, my mom's working, my dad's going to his in-laws, and a good friend of ours doesn't have any leave left from work to go to his family's place in West Virginia, so instead of schlepping to another big family function with either of my parents families, BF, my brother, our friend M. and I are going to have dinner at M.'s.  BF's going to do most of the cooking, which is awesome because he's an excellent cook and because I can't spend enough time on my feet to be of much help.  Were also going to have a pre-Thanksgiving dinner at my dad's on Wednesday night with our smaller group - siblings, step-siblings, etc.  It should be nice. I love Thanksgiving; it's like Christmas with out all of the gift giving, which I'm not crazy about.  I'm really at an unmaterialistic place right in my life.  I really enjoy getting together with friends and family far better than getting and giving gifts; I'm lucky enough to really enjoy my family.  We just all really get along very well, it's nice.  Christmas just seems so overly task oriented and stressful... the lines, the crowded malls, feeling like we need to visit all of our relatives in two days and the time we spend with them being focused on presents.  I guess it's always been one of my least favorite holidays; always too complicated with two parents houses to spend time at, feeling guilty about whichever parent was spending the holiday alone, and now it's even more difficult to get everyone in because we have my mom's, my dad's, BF's mom, and the little man spends Christmas Eve with is mom since that's when her family always gets together.  Last year we spent Christmas Eve split between my parents' houses, so they didn't get to see the little man open their gifts.  We spent Christmas morning at our house with BF's mom, but then we had to leave to go to dinner with my mom's side of the family (she was working, but it's a big family) and I felt guilty leaving his mom alone on Christmas.  I hope that at some point we can integrate BF's mom into our plans later in the day as our place is too small to have more than two or three people over at a time, but for now we're stuck running around everywhere.  So Thanksgiving is better.  I don't feel nailed down to one day and we just spread it out over several different days with several different family members.  I don't know why I get so stressed out over it every year; I'm not a Christian, neither is BF, neither is his ex, or her family, and both of our mom's aren't religious, but still consider themselves Christian.  So it really doesn't matter to me when we actually get together, just that we do.  Ah well, someday we'll have a house that's big enough to host in and we'll just have Christmas at our house.  Everyone else gets along just fine, I just think it's weird for all on the parents to get together at one of their houses; if it were our house it would be much more neutral ground and everyone would feel at home, well not quite everyone as I'm sure that the little man will always have a Christmas with his mom and her family.  And hopefully by that time I'll actually be well enough to host a party of twenty at my home.  I really hope that day actually makes it here.


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...


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.




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.


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.]


Learning to Live as a "Disabled Person"

So my Nine Inch Nails tickets were a Mother's Day present. Not exactly traditional, but exactly me. BF got me general admission tickets; on the floor, no seats, giant mass of people in black makeup, chains, and spikes. A dream really. I've been aching to be in the pit at a Nails concert since I was twelve years old. Needless to say I was thrilled with the gift.

Two weeks later I was in the hospital getting my pulmonary hypertension diagnosis.

It's actually kind of odd, I don't often go to concerts, but in the three months following my hospitalization I had four to go to. Pearl Jam and Ani DiFranco weren't big concerns; I'd have a seat and my oxygen, so if I needed to (and I did) I could sit and recompose myself. General admission doesn't really allow you that option. When you've got people packed in on every side of you, there isn't even the option to go sit on the ground at the back of the floor.

At one GA concert (when I was a "normal" 17 year old), I was wearing knee high black boots that were made for calves that were just a bit slimmer than my own. I had gotten them tied, just barely, and had my awesome fishnets-miniskirt-army jacket-spiked collar-and (most importantly)-big black boots in place and I was feeling my oh-so-hot-shit 17 year old self...until the crowd closed in and it became clear that those big black boots were tied just a bit too tight, tight enough that they were cutting off my circulation. Limited blood flow to my brain and with the heat of the compressed crowd first made my vision start swimming, then everything that was insanely loud and close started to seem very muffled and distant. I elbowed my way out of the crowd and back to the bathrooms in time to pass out in a typically filthy bathroom stall. But then there was an easy fix, once I regained consciousness; untie the damn boots and relace them so that they weren't depriving me of oxygen. I rejoined the crowd shortly and had a great time.

This time, of course, everything was different. Floor tickets or not, the venue was not letting me down on the floor in a wheelchair...apparently that would make me a fire hazard. They did, however, accommodate me very well. The handicapped section was very close to the stage and though I didn't get that experience I really wanted, I got to see a great show from pretty great seats. I dismissed my brother, who had come with me, to go join the packed mass on the floor and he had a great time too.

What this brings me to are the absolutely awful accommodations that I encountered two days later at a certain amusement park in Allentown, PA.

BF, a friend of ours, and I visited that big theme park down in Orlando about a year and a half ago. We were actually able to visit all four of their amusement parks in three days because of their excellent wheelchair accommodations. At that point, my problem was only that I couldn't walk the long distances required to do even a small percentage of the parks, so BF sweetly wheeled me (often at breakneck speeds) through the parks and the setup and the staff were just so good; I can't even explain how pleasant they made our trip, how helpful and friendly they were, and how much I was blown away by how well they treat disabled people.

So maybe I was spoiled, but Sunday's amusement park experience was just atrocious, totally unacceptable. We waited in mine for tickets for half an hour, me in my wheelchair, BF pushing. Not a single sign of announcement or hint of an indication was made that there was a disability policy in place, let alone what that policy was and how restrictive it would be or how taken advantage of I would feel when they finally told me about it. After buying our tickets and going through the wheelchairs and strollers gate, being let in by a man in a wheelchair who also said nothing about their disability policy or what I needed to do to ride the rides, BF and I proceeded to walk the fifteen minutes across the Midway to the first roller coaster that we planned to ride. We walked up to the entrance and were simply stared at by the attendant. After a god thirty seconds he bluntly asked me "Where's your boarding pass?" What followed was one of the stupidest conversations, with the most long pauses that I've ever had. He didn't voluntarily tell me what a boarding pass was when I asked, he looked at me like I was stupid while I pried the information out of him. And what I got was that we had to return back to the park entrance and get a "boarding pass" from guest services.

So we trekked back to the beginning and waited in line behind several people complaining about various issues. When we finally got to talk to the sixteen year old manning the Guest Services, she asked me my name, condition, and went through the various issues that would keep me off of the ride because the first half of the boarding pass was really a waiver and an aknowledgement by the park that I had the physical capacity to ride the rides in the park. I had no problem with that and because I really only need the chair so that I don't get worn out, I wasn't restricted from riding anything. Even if I had been because of some issue, I think that that would be an acceptable policy that would keep both me and the park safe. It was the second part of the boarding pass that pissed me off, and it really does take quite a bit to really make me angry, but the combination of a total lack of customer service skills by anyone in the office, their inflexibility, and the restrictive nature of the policy all combined to really send me over the edge.

The process involved in using the "pass" entailed going to each ride that we wanted to go on, winding our way back through the meandering handicapped entrance, waiting for someone at the ride to notice our presence, again a college or high school student working a summer job that they don't really give a damn about, and once our presence was actually noticed, handing over the "pass". The disinterested attendant, and I use the term loosely because they were far from attentive, would then disappear into the little control room, guess at how long the other patrons were waiting, and give me back the pass with the name of the ride and the time that I could return to ride. I was instructed that I could only go to one ride to get a time or the previous time would be crossed off and I wouldn't be able to ride that coaster unless I went through the whole process again. When I asked what they expected me to do during this arbitrary amount of time that had been divined by an eighteen year old working a boring summer job, they simply told me that there are lots of other things to do in the park while I waited. Things like spending four dollars on a bottle of water, playing over priced carnival games, and generally just pouring more money down their gullet. That's where I really started to feel taken advantage of. How on earth did these people really think that these kids could guess at how much time it takes to get through the lines? I've been to far too many amusement parks where the front gate says you'll be waiting an hour and twenty minutes later you're walking off the ride. I didn't want these kids cutting my day short with bad guesses. And if they had even made it okay for me to go sign up for one more ride during the time I was waiting it may have been okay, but I either had to wind my way back out of the handicapped entrance, wait and then wind back through, or spend that time feeding their vendors money for overpriced crap. And to top that wonderful policy off, I was required to be back at the ride within five minutes of the time that they gave me or I'd loose my spot completely.

So I wasn't happy. I disagreed with the policy and I felt that they were seriously limiting the ability of disabled people to get the full value of their tickets. I told them that I'd already been at the park for nearly an hour and a half, hadn't ridden a single ride, didn't agree with the "boarding pass" policy and felt that I wasn't going to get the experience I'd paid for, so I just wanted a refund and I'd leave. Well apparently they have another, very inflexible policy, that simply states "No Refunds Under Any Conditions". When I asked for a supervisor, he simply restated the policy to me about nine times until I was really just pissed beyond pissed. He wasn't listening to anything I was saying an he was insisting that I couldn't speak to anyone who had any real authority because all of the managers were in a meeting. So I dug in. I told him the I was physically, not mentally disabled, that I understood the policy, but I was dissatisfied with the whole experience (a feeling that was getting more intense with every word he uttered) and that I wasn't going anywhere until he, or someone above him that was authorized to do so, gave me my money back. I also mentioned that it would be far easier to refund my ticket than to have to deal with an ADA attorney, at which point he walked away from the window and said he couldn't talk to me anymore if I was going to talk about lawyers; that's also when he called security ON A GIRL IN A WHEELCHAIR. I hadn't threatened to come back there and beat him with my oxygen tank, I had simply told him that I wasn't going anywhere until I got a refund. Security seemed to find his calling them laughable and the two guards milled around the office with nothing to do. They certainly couldn't kick me out, I hadn't done anything that was against their rules; I was just complaining. After arguing with him about his total inability to ask a single manager to leave the meeting for a moment to deal with the situation, I demanded the corporate office's number; there was no way I was givig in to this twenty something jerk that was smirking at me and not being the least bit apologetic that I, as a patron, was displeased with the park experience.

Calling corporate was the perfect move. I immediately and politely asked for everyone's boss when they got on the line, until I actually had someone with authority on the phone. She was still resistant, but I continued to dig in my heels and state my case in the most mature, polite, and still assertive terms possible. After a good ten minutes on the phone with her she agreed to call the office and instruct them to give BF and I a full refund. It took her another half hour, during which we just stayed in the tiny office, to make the call, but a very sweet, very apologetic woman did eventually come out of the office with a refund receipt and cash that covered the price of admission for both BF and I and the fee that we'd paid to park. I was so happy when it was finally over. The only unfortunate part was that the asinine supervisor that had argued with me for so long was nowhere to be found when I finally got what I had come for.

It was ridiculous. The whole stupid thing was ridiculous. Their park is so badly setup for people with disabilities, with huge hills and ride groupings that force you to spend half the day wheeling back and forth across the park. It's just not ADA friendly as far as I'm concerned and you can bet that I won't be returning unless their policies change and they seriously clean up their act and improve their staffing.

It's really strange for me to adjust to this whole new part of my identity. Wearing the oxygen, riding in the wheelchair; it's all very new and very alien just to see myself that...disabled. I'm getting used to it though, it doesn't bother me as much, but it still occasionally makes me feel that teenage "everyone's looking at me" complex, but being an adult, having studied psychology, being a social sciences freak, I know that that feeling is unwarranted. Sure I still get the occasional prolonged look from another adult who I can just write off as uninformed and not very polite. And there are the kids, but kids stare at people whether their wearing oxygen tubing or not. People just don't enforce the "it's not polite to stare" maxim with their children anymore, but they're kids, so it doesn't make me feel like a freak. It's just an adjustment I guess. Having to deal with "accommodations" and special policies and being conscious of my body and my movement to such a greater degree is weird and not easy, but just like everything in this topsy turvy new world of mine, I'm adjusting, figuring things out, feeling my way. I'm confident that I will get there. And I've already proven that I'm willing to accept this new me and stand up, not literally of course, for my right to be treated like an average capable person that just needs some slight help doing those average everyday things.

It Rocked!

Twelve years after falling in love with Trent Reznor, he still blows me away. The Nine Inch Nails concert rocked, to say the least, and I will say more, but for now I'm going to bed.



Sunday was my step-mom's baby shower.  She's terribly considerate; she stopped to have some private time with me to make sure that I wasn't upset about all of this, the shower, going through baby stuff, watching her get more and more pregnant everyday.  I was really touched; here she is, with a transverse breach baby that is bound to be enormous by now (my brother was a 9lb 8oz baby and I was 8lbs 9ozs, my dad is 6'5 and she's about 5'5), she was in the hospital last week with regular contractions and a highly elevated blood pressure, she's got four kids at home to manage while they're out of school for the summer, and she watched our little guy last Monday while I was in the hospital, but she still has the time, energy, and clarity of thought to be considerate about how all of this might be upsetting for me after the recent revelation that I won't be able to do the whole pregnancy thing.  It was really sweet.  Thankfully I could honestly answer that none of this is bothering me.  

I think that a big part of it is that I'm already head-over-heels in love with this baby.  It's a bizarre feeling and I can only imagine how much incredibly stronger that feeling is for a pregnant woman, but this has been "our" baby throughout A.'s pregnancy and it's kinda been burned into my mind that way.  I know that I will have virtually unfettered access to spend as much time with the little one as I want.  I know that my presence is not only welcome, but desired during her labor and the birth.  And I know that this baby is just going to bring so much joy to our newly formed family.

If this was one of my girlfriends that I had to watch grow bigger and talk about birth plans with I don't think I would be okay with it.  I would try.  I would want to be happy for her and want to be supportive, but it would hurt like hell.  There would be that It should be me feeling.    I feel robbed of those kicks in the ribs, the inability to breath normally, a smooshed bladder and all of the other wonders of pregnancy.  I already feel like some great big cosmic force has cheated me out of my right as a woman to be a life giving vessel.  Which is hard to feel because I really do believe that life is here to teach us lessons, to help us grow, to make us the people that we're supposed to be.  This is just a really shitty lesson and I don't get what all of this crap is teaching me.  To be a stronger person?  To be better in trying situations?  To cope with loss and grief better?  Sometimes I'd definitely take far less character if it meant that I could just be a normal 24 year old woman with normal 24 year old concerns.  I wish I was applying for jobs rather than disability.  I wish BF and I could fight about who's turn it is to take the house rather than whether or not it's fair for me to want to have a baby if I could die in a decade.  

Hmmm...this started out as a much more up beat post.  I was feeling elated.  I only have a few weeks left until this little person shows up and I get to see it dressed in all of the adorable little outfits that A. got at the shower on Sunday, that I get to gladly take it whenever she needs to deal with the kids, or say, take a nap and a shower?  I'm happy about this, really happy.  It's the sun that's broken through a bank of storm clouds.  It's a concrete reason for me to feel that life does in fact go on, stupid freaking disease ridden body or not.  So I'm clearly still torn about my feelings about the whole "barrenness" thing, but I am absolutely certain that I'm thrilled that A. is pregnant, that these two great parents are going to be doing it all over again, and that this new little life is coming into my life.  


In Which I Bitch About a Fever and Sign Over My Life.

As if I haven't been through enough in the last week, now I'm actually "normal" sick (as BF so elegantly put it).  

When I got home last night, after driving way too far to do some fruitless shopping and eat at a food court, I had a horrible headache.  Since they put me on lopressor to attempt, unsuccessfully, to keep my heart rate at a reasonable level (say 100 bpm or so), I've had a pretty constant, generally low-grade migraine.  I don't really think it's a good thing to fuck with someone's blood pressure when they have chronic migraines, but hey, I'm no third year resident.  Generally though, when the headaches get to the point where my whole head is pulsing and I truly wish it would just explode already, I can take my sleeping pills, pass out, and wake up with only a baseline headache - not horrible, not something I want to keep having, but not horrible.

But this morning my throbbing head woke me up at 6:30, along with a sore throat and chills.  I drug myself to the kitchen and sucked down a glass of ice water and then took my temperature.  My usually balmy 97.5 had rocketed up to 101.5.  Shitty.  I usually run a low-grade fever of around 99.5 or so when I'm having an autoimmune flare, but this, this is above and beyond and just fucking ridiculous after being in the hospital for four days without going over 100.

After taking four tylenol, my fever dropped down to 100.5.  I never get sick, like "normal" sick, but it seems that being "abnormal" sick has made the process easier.  I got myself some ice water, some toast, arranged the pillows just right and curled up with Stephen King's "Cell", which I'm reading for the second time and enjoying just as much as I did the first.  After a couple hours of reading, my eyelids got too heavy to make out the words and I gave in to the inevitability of sleep, waking up about six hours later.  The fever was back, well I should say the full-blown fever was back as it never actually went away. 

BF came home soon after and attempted to get me to eat something legitimate.  I refused, but he made me some cinnamon-sugar toast.  I don't know if that's legitimate food, but everything else sounded totally unappetizing.  So we sat around and watched TV and I tried to be comfortable on the couch.  Totally boring night.  The fever still keeps coming back.  I keep taking enough tylenol to keep it to a dull roar.  God, I just realized how terribly boring this post is.  No climax.  Rather repetitive.  Ah well...I guess "normal" sick isn't really much to talk about.

Alright, how about this little gem - I got a call from the hospital's billing department about two hours before I was discharged on Monday.  The voice at  the other end of the line identified herself and then tersely informed me that my health insurance had "termed" June 30th.  What?! I had to ask her to explain what the hell she meant as I had no idea what she meant by "termed".  Once she explained it, well, I really had nothing to say.  I was shocked and there were a million things running through my head.  First was how on earth was I going to pay for a hospital visit without health insurance.  Of course then there was the fact that I thought I knew that I had purchased a full year's worth of health insurance through my college last September.  But there's just something about someone dropping a bomb like that on you that makes everything that you know seem very uncertain.  Maybe my health insurance had expired when I ceased to be a student?  Maybe I just wasn't paying attention and had screwed up royally?  But then there were the prescriptions that I had filled during the last two months and the doctors appointments and the echocardiogram, ultrasound, gallbladder study...You get the point.  Thankfully everything is online now and I was able to easily get onto the IBX website and check out my policy.  I'm covered.  I don't know what kind of crack the billing department is smoking, but freaking out patients, making them think they're going to be responsible for thousands of dollars worth of hospital bills, not cool.  

It did turn out to be a blessing in disguise of sorts though.  I thought that my coverage was up on September 30th.  I'm lucky enough that the company that BF works for offers health coverage for domestic partners, so I can continue my coverage in a few easy steps, but I thought that I didn't have to think about it for another month.  Turns out my coverage is up August 31st and I have to deal with all of the details Right Now.  

In order to officially prove to the insurance company that we're "domestic partners" there actually have to be legal documents in place that tie us to one another.  Who knew?  We already have a lease together, so I spent some time this evening putting together a will, of which he is a beneficiary, and a durable power of attorney, so he can control all of my assets.  Yay!  Neither of these documents actually means anything as I have no assets, unless you count a seven year old Jetta that I won't actually own until next May, but that worth...well I try not to think about that.  So after a few signatures and a trip to the notary public on Monday I won't have to worry about my health insurance again ever, well hopefully.  


Well I had a simply wonderful week last week.  Sunday, Monday and Tuesday I was feeling a generalized sense of malaise and fatigue.  Wednesday I had to skip our weekly (or monthly, or bi-monthly, or whatever) board game night so that I could crash on the couch with my oxygen.  Thursday was much the same.  Thursday night I had to wear a pulse oximeter overnight to prove to my insurance company that it was actually necessary for me to have oxygen.  When I put the damn thing on it was already in the low  80's, (off oxygen) and when I woke up it was 79%.  That morning a rep from the oxygen company come over to complete the test, which included having me walk around with the pulse-ox on while on and off of the oxygen.  On oxygen it went up to the low 90's which is generally what I'm shooting for, but without the oxygen it stayed in the low-low-80s.  It also monitored my heartrate, which is supposed to be supressed by the lopressor that I take regularly.  Clearly it wasn't working because while walking around my apartment at a leisurely pace, on oxygen, my BPM went up to 157.  So I called my PH doc, who said that it could be nothing, or it could be lots of things and I needed to be seen in the ER.  I've heard that line so many times I almost expect it now.  

So I went to the ER where they found two infiltrates on CT that they dubbed "pneumonia" in the right and left lower lobes of my lungs and admitted me.  I got to my room at 2 am and then had to wait for the attending to come in and assess and admit me.  The one little boost to my night was that I got to show off the program that I have on my iPhone that keeps track of all of my medications and their dosages, so instead of having to rattle all of them off and try to remember which dosages go with each drugs, and then spell them out, I could just hand my phone over to the doc and let him go for it.  It seems like something so simple, but when you're on eighteen different medications - several of which the regular med-surg doc has never heard of, it really isn't.

So I got settled in that night.  I had my own room with a nice big bathroom with a shower in the new wing of the hospital and the bed was sublime, air that automatically reacted to pressure points.  BF and my brother spent the day hanging out with me all day Saturday.  My dad hung out for a bit that night and we got to talk about cord blood banking and the possibilities that my step-mom being pregnant presents.  My dad isn't much for the medical info, I'm not even really sure that he fully understands what's going on with my health right now other than the gravity of it.  So I explained as much as I can about the drugs that I'm on and the advances that are being made and the difference between embryonic, umbilical, and adult stem cells and the possibilities for a match with the new baby versus my younger brother versus a stranger.  We talked about the price, which doesn't seem to be an issue for them (though I know that things are tight right now and that it won't be an easy two grand to come by - I'm not going to worry about that though because I know that he would pay anything for my life and I love him to death for it).  So I've got to find out a bit more about getting that set up and making sure that A.'s midwife knows what she's doing when she collects the blood, otherwise I'll have the OB that'll be standing by do it, the last thing I need is for a mistake to screw all of this up.  So my dad left that night and at some point I got to sleep, thinking that I was going home Sunday afternoon on PO antibiotics (yes, even after the pulmonologist and the rheumatologist basically came out and said that it was not pneumonia, they still were pumping Levaquin into my vein.

Sunday I was feeling fine, as I had been the entire time.  As long as I wasn't up and walking around my heart rate was normal and my PO2 levels stayed in the low 90s.  However, I was having trouble with my IV again.  I have notoriously bad veings, hence the PICT line the last time I was admitted.  After 5 hours in the ER I made them take that one out because it was too painful.  The venipuncture team had to come to get a new vein; generally, nurses can't find them.  Saturday night when it came time for my infusion of antibiotics, we had to move the new one.  I had tried not to bitch about it, but it had been sore throughout the day and when the nurse got a look at it and the infiltrate that had started to develop, she pulled it right away.  It sucked, but she got a new, smaller one in on the first try (apparently I got the penthouse suite, with the best nurses and the best rooms...lucky me.)  The next morning I had to get a chest x-ray to see if anything had changed.  When I got back to my room, anticipating having to have this new IV, which was starting to hurt and to radiate heat, replaced yet again.  Luckily, the nurse had managed to get the docs to transfer both of the IV meds that I was taking to pills, so I got to just get rid of the IV right then and there.  

So Sunday I got to see BF and the little guy twice, once in the early afternoon and once before bed with Dad, A., and my little brothers and sister; it was quite the crowded room and I loved it.  It makes it nicer to be stuck in bed when you're surrounded by people that you love.  The little man came in scrubs, which was a big hit with everyone there.  And he was pretty good while he was there too.  A. has a 5-year old and he and the little man are really starting to play together pretty nicely.  They kept me Sunday to see how I was reacting to the steroids, but didn't take another x-ray before I left on Monday, so I really don't see why I couldn't have gone home on Saturday...They just seem to have no sense of urgency when it comes to that shit.

Anyway I was glad to be home yesterday.  I can't understand what changed that made them release me, but whatever, they did.  The steroids make me want to pull my hair out with the goddamn hot flashes, but just sitting on the grass with the kids running around and a little fuzzyheaded man in my lap really did a lot for my mood.  We had dinner with my dad and the fam and got to just chill for the evening.  I was wiped out today, so LM and I colored and watched Oswald (his absolute favorite) and then he napped and I fell asleep for the better part of the rest of the night.  LM woke me up for a bit to cuddle after his dad came home and before he left for his mommas, then they left and I crashed again.  BF woke me up with shrimp marinara and we spent the rest of the night relaxing on the couch.  

Tomorrow we get to go shopping for baby stuff for A.'s shower next weekend.  It's getting so close and I'm so excited.  I'm also nervous that this baby is going to dredge up a lot of that "I really want to have a baby of my own" stuff.  It's going to be really bittersweet.  Holding that little angle in my arms.  Having it sleep on my chest.  Getting A. to let me hold it as much as I want.  Wanting it to really be my baby, not "our" baby.  I love that they're as open to us being involved as they are, I don't know what I would do if they weren't.  Cry probably.  But I'm going to cry either way.  It's just so unfair...everytime I think that I've gotten on top of my feelings about it, it comes back and bites me in the ass.  But as I said before, today is better than yesterday and while I know that this will not go away, I know that I can do as much as I can to make myself as healthy as I can and convince BF (who will hopefully have graduated to a more legal title by then) that I can handle taking care of a newborn and a toddler and a child and all of that.  

Disability still hasn't given me an answer either.  It's just three months now though and I expect that within the next month I should have their initial decision.  That's going to change things for the better.  Everyone I talk to sees no reason that they could reject my claim at this point.  I can't work.  I have a job interview on Thursday, but I think I'm going to cancel it.  It's too far away, it's too inflexible, I just don't have the nerve to commit to something that I feel I'm going to fail at.  Feeling unreliable is one of the worst feelings about this whole thing.  We need to work.  We need to feel productive, we need the social aspects.  We are meant to work.  I just need to figure out how to do that.  I can watch LM and I feel like I'm getting better at it.  It's weird, early childhood education is the last thing that I ever saw myself doing, but now that's my only real job and I take it like a job.  Of course I love him and that helps, but I research different activities that we can do and color big letters so that he's constantly surrounded by the alphabet...I'm trying to teach him the sounds that each letter makes and also trying to boost his fine motor skills so that we can start writing them, but now he needs to master being much more exact with the control he has over his lines.  Today we discovered that markers work much better, because he doesn't have to push down on them to see the results...He really seemed to like them.

Anyway, I've hit on like five different topics here.  Part of that are the sleeping pills, part is the painkillers, and of course the major part is that I've got a million things on my mind and when I start writing they start spilling out of my head.  So I hope they're coherent and I hope that just maybe some of them are entertaining, well written, etc.  But really, this is for me.  I need to get all of this crap out of my head and I really appreciate other peoples input.  Perspective is always appreciated, as long as it is done in a positive way...Ehat did our kindergarten teachers used to say? Constructive Criticism!