More Medicine-y stuff

I know everyone (like the 3 of you that read this) is probably tired of hearing metalk about my medicine... but I don't care. 

I have great news!

I think the Humira is working!

The Saturday before last I took it for the first time. I couldn't feel the needle at all, but the medicine burned like the dickens! I'm going to let it sit out of the fridge a BIT longer next time. I started having some bad emotional side effects of the Prednizone (I've had that happen before), so I decreased my dose to once a day instead of twice (I don't recommend playing with your dose like that, but let's just say the side effect was getting kinda scarey). I also had to decrease my NSAID (mentioned that one to my doctor) because it was thinning my blood so much I was getting severe nose bleeds. So I basically halved my medicine that was already not enough to keep me out of extreme pain. 

Side note: last weekend, James and I went to the mall to look at wedding bands, as I stood up my knee had this searing pain, it was AWFUL! I was limping throughout the whole mall ("Honey, why did you have to park as FAR as you possibly COULD from the entrance?!?" "I didn't, I parked three spaces from the farthest spot!") Then we went to Kroger, where I finally gave in and got that new shiny pretty blue cane I'd been eyeing (I KNOW, I'm in my mid 20's and I've been EYEING A CANE! I'm such a geezer :p ) Another tangent, don't you find it odd that you have to be rather strong to be able to get the plastic devise off of a Kroger cane? I find that ironic...

Okay, back to the point. So, I halved my medicine, and I have been having one of the first weeks in a long time where I've been really REALLY good. Now I can't run a marathon or anything, but I'm hoping that I've finally found what I need to be my normal, happy self again. 

The downside? I can't breastfeed. I have been wanting to be able to for the longest time. So now I'm not only going to not be able to give my children most of my time by staying at home, I can't even feed them (you know, the natural way) Sigh, I realize that I might not have been able to anyway, as a lack of breastmilk runs in my family. I guess I should just be thankful that I'm able to take something that I can have kids with (that was not a given even 10 years ago). 

My second dose is tomorrow (yay for only having to stick myself twice a month!), I'm wondering if I can get off of the other medicine all together after that. That is the ultimate goal anyway. 

Oh, I've officially applied for the Humira patient assistance program. I find out by Wednesday whether or not they will accept me. If they do, I get totally free medicine for a year. After that? I have no idea, I'm assuming I'll just have to keep applying for the medicine year after year. I guess that's the price for free medicine, right? I'll take it. I heard I was a shoe in for the program, but we'll see. I'm living off of 2 months of free samples right now. (Thank you Lord for free samples!!!) 

Long story short, I have been feeling much better, within two weeks. Dear trend, please continue. 

BRIDAL SHOWER!!!

So, I had my bridal shower last week. I told them from the get-go that I didn't want to have anything to do with planning it, just tell me when to be there (for convenience sake it was in VA, the wedding is going to be here, though. 

L to R: Matron of Honor, Me, Mom

My hair is still REALLY thick even after getting it thinned out!

First we had a few MadLibs, which were hilarious. Next, PRESENTS!

My friend's daughter knew I needed help opening the presents...
especially  the ones with big, long bows

Here's my Rehearsal bouquet

 Then, we split into teams and we had fancy toilet paper dresses made for us. That was really a highlight of the day. My friend's daughter had to participate. (And yes, I did get rolls of left over tp as a greatly appreciated present!)

Sorry that there's not too much to say about this. It was fun. I was exhausted. I'm getting ready for Mass... the end.

To be normal again...

I really shouldn't complain. I'm able to bend my left arm, I'm able to walk, I'm able to do a lot of things that I couldn't do as of a few years ago.

But I hurt...

What stinks the most is that there has been a never ending trial with my newest new medicine. I have one month's supply in my fridge now, but will it take longer to get approved for it?

My work's insurance will not cover Humira. Humira is the only drug I can take now because it comes with an epi-pen like thing (it's a self injection) so that I don't have to see the needle or make the stabbing motion on my thigh. I used to do it in high school, but after a while I stopped being able to.

Well... my insurance refuses to pay for a dime. They say that there are three other medicines I can take (One of which failed me pretty badly in the past, all three are just needle and syringe), so I have to fail them before they will consider Humira. Well, I'm eligible for a patient assistance program, but they have to go through a host of crap first, and it'll take up to 2 WEEKS to process. Ugh. And then, the assistance program only extends to one year... I'm guessing that it means I'll just have to reapply every year, but that gets kinda old after a while.

I don't know why I complain. The days where I need to use my cane are few and far between. I desperately need to buy a new cane, my dear old Bartholomeu (Ya, I named my cane) is all cracked at the top from numerous droppings. I almost bought a new one but my pride doesn't want me to. I keep reminding myself that it would be good to have a spare one at work, but part of me (being the youngest full time employee) just can't stomach the idea of being the only one with a cane there.

I can't talk to James about this, and that makes me cry. He is great and wonderful if I need him to get something for me. He reminds me to put my medicine in my purse every evening (I take it twice a day). But with anything emotional... he kinda fails... miserably. I start to try and talk about how something makes me feel and he will either unintentionally change the subject, or wait through that awkward silence and say, "Oh... well if there's anything I can do..." No! I want you to comfort me, cry with me, tell me how YOU are hurting to see me hurt! Hold me! Encourage me to be strong and push my way through this! Tell me you don't know when it will get better, but you'll be there for me every step of the way!

He doesn't know how to deal with me like this because he hasn't seen me like this much (okay, he doesn't really know how to deal with emotions ever, but still). Sigh. I had a really bad outbreak of arthritis a couple of years ago, that's when I got my cane. It was one of the most humiliating things I ever did to walking around my college campus with that thing, but I made a game out of it. But then I got on Remicade. Two words: Miracle. Drug. I basically had no symptoms of arthritis for several years with that. In fact, it sent me into a medical remission. I didn't start having symptoms again until I stopped taking it for about 8 months. Why did I stop taking it? Well, I used to be on Mommy's insurance, which made it about a $35 copay per dose (every 2 months). Now I'm on craptastic stuff for the real world. Remicade is about $2500 a vial... I get three vials in one dose. Sigh, I always knew this say would come... oh the joys of turning 26 and getting booted off of mom's insurance!

The hope is that Humira will make me "normal" again. Right now I'm having the pain staved off with Prednizone (horrible drug don't ever take it unless for very short periods of time), Plaquinil (I'm convinced this does nothing), and a heeeeavy NSAID that I had to halve the dosage because it was giving me severe nosebleeds.

The two doses of Humira I have in my fridge are free samples from my doctor. My hope is that it will help me  just like the Remicade. My hope is that I wont struggle to be able to pick up the phone at work on the days I forget to bring my medicine. My hope is that I can go back to taking one pill a day instead of 8... my hope is... to be normal again. There were a few years there, where I could forget I had arthritis from time to time. I'd like that.

Wedding Update

I think I'm going to regret not updating this more often about all the fun chaos that's going on this time of my life.

Hair: I found a really good woman to do my hair for me. She did my future sister in law's hair for a while and she really liked her. I can see why, the woman is very talented. I have the obnoxious problem of having waaaaay too much hair. It is getting so long that it's almost impossible to do anything with it, too. Well, I got it thinned by this woman and... wow. I lost literally a pound and a half of hair, and I still have more hair than the average female. I've decided that after the wedding I'm going to get it thinned out as thin as she reasonably thinks she can get it, but I'm just happy to be able to manage my hair again!

A pound and a half of hair, and I lost no length at all. 

Shower: I have my bridal shower this weekend!!! I'm soooo excited to get to go see my good girlfriends, but I'm not too happy about being away from James for 4 WHOLE DAYS!!!!! I'm going back to DC to have it (ya, I know most girl have the shower in the town they live in, and the wedding in the town they are from if it's different... I go against the grain I guess... or I just don't like the inconvenience...). I know almost nothing of what's happening except for when and where it is... except one of my friends asked me and James to provide a list of 5 characteristics that describe the other... let's just say James wasn't very pleased. He did it, but no doubt they're about as sarcastic as his answers could be... I'm like, "look, buddy, it's not like YOU are the one who's going to have to sit through all of it!" I mean, I trust these girls (mostly) but I'm really not too sentimental either... here's to hoping, I guess...

Gifts: I've been watching my registry like a hawk... I finally stopped looking at the specific items that have been bought when I realized that I'm going to need SOMETHING to be surprised about at the shower! I mean, I am sure some people will give me money (which I never know how to react to) and some people will buy stuff not from the registry, but it's like, "wow, this thing.... I was... hoping someone would get it for me... yay..." I also abhor opinging presents in front of people... all their expectations and such... But anyway, 22 gifts have been purchased (it was 19 this morning) out of... a lot (we're greedy). I'm kinda excited to find out what we're going to get. Fed Ex called me today and said that they'd be delivering the package around 2pm. I asked James about it and he got no package. Now either it went to his apartment (which means either his roommate picked it up or one of his neighbors will [not in the good way] because he wont be back there for several days) or they dropped off something at my parents house. I went ahead and changed the address on the registry from his apartment to my work so that we don't have to deal with that more.

Photography: We canned our photographer. James wasn't happy with them and they have been bugging me to no end about our engagement shots. Seriously, they have called me at least twice a month since we've picked them, yuck! I told them in November not to bother me until the Spring for engagement shots, but they wouldn't listen. And then the guy calls me one day and I'm being rather obviously short with him and he goes, "You're not getting stressed, are you?!?" I was literally dumbfounded. He then proceeded to tell me that most girls have their bridesmaids do all the work (ya... right). I told him that all mine were in different states and so he dropped it. I mean, seriously? Who does that? I only stressed out about this for like a day, then I found someone who seems pretty good, and you almost always can convince someone to give you a deal when you're two months out and they don't have a wedding planned (though I'd recommend against planning it that way).

Invitations: I've sent almost all of them out. There are 4 stragglers (people who I got their addys late, plus two that live in different countries (I already know one of them has his ticket and the other one isn't coming) that I'm not the most motivated to get the invitations to right away.

Nails: I decided I wanted to not go the fake nail route (sorta) for the wedding. My nails are paper thin, so they don't grow well or stay long for long, so I've decided to grow them out a little and shellac polish them. I'm excited to see what they look like. I'm doing it tomorrow (I went over budget for February... tomorrow is March!)

Ring: I got a new engagement ring. Apparently I am allergic to white gold. We had an interesting time at the store. James didn't mind me coming along to pick out the new ring, but he soon regretted it. This one was too this, that one was too that. After tons of different options, I found one. It had originally an opal in the center, which we replaced with an aquamarine. I'm fiercely opposed to the conflict/blood diamond thing, which is way closer to home than most would suspect (most diamonds come from 2nd or 3rd hand places before they get to America, so they honestly can say they didn't buy from a discredible source, and the others honestly can dehumanize people). And even if they DID come from a decent source, I don't like the idea of buying the type of rock that people have died over. For example, a new diamond mine was found in a poor town in Africa, within a few months, the government was set up to shoot anyone who tried to "steal" diamonds from it. Don't believe me? Google it.

Now you must add the obligatory "Oooo, ahhh"

Still working on figuring out wedding bands, though. His is gonna be EXPENSIVE. Oh well, we'll find a way.

That's about it for tonight. Going to head to bed soon. God bless, everyone!

It's not about freedom

You know what's driving me nuts about this whole HHS thing? Catholics that write this crap.

http://www.glennbeck.com/content/blog/show/its-not-about-contraception/

I hope you didn't read any more than the second sentence of that, it just hurts. It IS about contraception! It's not that the government is forcing us to do something, it's that the government is forcing us to do something WRONG! Forcing someone to violate their conscience is wrong. If the government mandated that contraception was to be taken out of all health insurance policies, would that be wrong? NO!

People, government is, by nature, a good thing. It's the abuse of government that is so cruel. I can't stand these libertarian idiots who say that freedom is more important than the good... NO. The good is more important than freedom! Not getting blown up is more important than my privacy when going on an airplane. There is no such thing as a "right" to vote. If there was, God would have instituted it and we would have had a very different Savior (perhaps it's the lack of holiness in me, but I totally would have voted for the guy that says we can do whatever we want without offending God!).

All of the papal documents that have addressed government say point blank that governmental control is a good thing. The government exists to protect the good and orderly in society. We can't go saying that just because the government did something bad that we should annihilate it (I'm talking to YOU Ron Paul!). How about... oh I don't know, FIXING the problem???

4am

It's 4am, and I'm awake.

It's basically normal for me to awaken sometime during this hour. I generally need to go to the bathroom, change positions, or whatever, and then go back to sleep.

I can't.

The reason is because I'm sobbing too hard. I'm on this new medicine (a different one from my previous blog posts). This medicine is less controversial, so I'll be more frank about it. It doesn't matter what it's called, because I can't spell the darned thing anyway. The fact is that it's not working.

I was taking prednisone in addition to this new medicine (more on that later) and I was supposed to start tapering off after a couple of weeks. I decided to try yesterday, and I woke up with a huge flare up in my left elbow and a smaller one in my knee. Now, this is actually improvement to only have two problematic joints, but you must understand that that's just about as consoling as the phrase "President Mitt Romney" is to this country (ie. a heck of a lot better than where we are... but come on!). I tried once more last night not to take the prednisone, but here I am, awake and sobbing.

My elbow hurts. I just took my prednisone, but I'm running out. I only have 5 left and I'm not sure what to do. Do I give this new medicine more time to try and work?

This is an increasingly frustrating situation because:
1) There is a host of potent medications out there that I could easily afford and be able to use... that is if I wasn't Catholic and getting married. I can't use methotrexate because it's an abortifacient. I originally had qualms with using it in my early Catholic days, but my (nominally) Catholic doctor helped me realize that it's not a sin if you have no possibility of that effect.

2) I was on a good medicine, but with getting off of my parent's insurance and solely onto my work insurance, I can no longer afford it. With my typical 80/20 plan, that puts me at over $1,400 every other month (all other expenses excluded). While I'm willing to TRY to make this work if it's absolutely necessary... I honestly just don't think I can. (PS, I got off of that medicine a while ago because it was actually found more potent than necessary, so it's not strictly a cost issue, but with it not even being a real option in the future, my heart breaks a little) but my doctor also recommended against using that drug if I were ever to get pregnant.

3) I'm consistently having to take time off of work to see the doctor (I have other health issues that need to be addressed, too, you know), talk to doctors, call doctors, think abotu calling doctors... it's just too much.

One of these days I sincerely hope to make a trip to Lourdes.

You mess with all of us...

Obama has done himself in on this one.

I'm not going to pretend you don't know about the whole disgraceful attack on conscience issue that's come up. If you don't know about it, go to usccb.org. Even the most liberal of Bishops are speaking out against it.

When Obama does something to get Cardinal Mahoney (the former Arch Bishop of Los Angeles that Benedict couldn't wait the normal five years to replace) to say something like "My vote on November 6 will be for the candidate for President of the United States and members of Congress who intend to recognize the full spectrum of rights under the many conscience clauses of morality and public policy. If any candidate refuses to acknowledge and to promote those rights, then that candidate will not receive my vote." on his January 20th post to his blog listed here,  you know he's gone and done it.

Not gonna lie, it freaks me out that for ONCE I agree with Mahoney, AND Diocese of Rochester, AND The National Catholic Reporter (one of the worst claiming-to-be-Catholic publications EVER) (here and here).

I did check the Women's  Ordination Conference to see if they said anything. Nadda as of yet. If THEY would have put up something on their website against this, I may have died of happiness right here and now.

Napoleon once said that he was going to try and destroy the Catholic Church. Someone responded to him with, "But the Clergy has been trying to do that for centuries!"

Never before in my short (7 year) Catholic lifespan have I ever seen so many Catholics so united. While some may see this as kind of pathetic... I'll just be happy with what we have right now.