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.