Faith 4 Sale

I’m back.  When I left off last, I asked if you would like me to keep blogging.  The response to this was an overwhelming yes, so here I am.  A lot has happened during my absences. One change for instance is,  I am blogging this live for St. John’s Mercy.  I was admitted to the hospital on Thursday May 28th.  All day I had a slight feeling that something was off, and by 7pm I knew I had to go.  I waited until 10:30 to actually go to the ER because I am stubborn and wanted to resolve an argument with a friend.  I felt that the hospital could wait.  By the time I decided I had to go, fight or no fight, my left side felt like someone was stabbing it repeatedly with a hot, sharp knife.  My “friend” and I never resolved our issue.  That’s just how some things go.  St. John’s had just had their rush, “we were lucky,” said the nurse that walked me to the observation room.  There had been a 2 hour wait just to be seen until a few minutes ago.  We waited 4 minutes.  The ER doc came in,  and with the usual disinterest of an ER doc,  reviewed my symptoms.  Severe stomach pains and severe nausea.  History of Systemic Lupus Erythametosus.  He ordered an CT scan (no dye contrast, dye kills kidneys) and an abdominal ultrasound.  He gave me Zofran for nausea and Dilaudid for pain.  Neither worked, so I asked for more. Now here’s something I don’t get-they allowed me to take my pain meds every two hours and increased the dose when I asked.  However, when I asked about my nausea meds, it was an ordeal.  My nausea meds could only be given every 6 hours, no discussions!  Who knew?  I thought the narcotic would be more  controlled and an issue, but obviously this was not the case. Why would my nausea medication, one that barely even works for me, be the one that is super controlled?  Apparently, its supposed to be one of the best anti-nausea drugs on the market.  Its not.  So after my drug routine was established,  I was moved into a room.  With a roommate.  I never have a roommate.  My  immune system is severely compromised and people in hospitals are sick.  I told the nurse my situation and she moved my roomie out to another room. Success! Or so I thought.  In the next couple of hours, my nurse tried to get me to sigh a private room charge sheet-$50.00  extra a day for a private room.  Uhm.  NO.  My makes it medically necessary to have a private room.  A few more hours passed, and they tried to bring someone else into the room.. WTF?  Lucky for me, my doctor was walking in at that same time and he ordered that I in my own room.  Surprisingly, no drama after that.  Isn’t it funny how things resolve themselves when the right people are involved?  I do.  So yeah, here I am in the hospital, on IV #3 already, God, my veins are bad, and full of pain and nausea meds.  I don’t know when I’ll be out, but until then, you know where I’ll be…

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Since I’ve been gone for a while, I decided that I’d give you two entries today.  So…Quakers.  All I know about Quakerism is that they rrefer to each other as “Friends,” they believe in Christ, and there is some form of meditation involved. Also, they are not the Amish. That’s not a lot of knowledge.  I guess I need to do some more research on my new religion.  If you know anything, go ahead and leave me a comment, I’d appreciate the help.

In other news, my kidney function is down from 6% to 5%.  That’s no good I tell you, no good.  What this means is that it is not stabilizing and that it will continue to deteriorate.  At this point, I’m used to getting bad news.  The thing with bad news, though, is that no matter how much of it you get, it never gets easier to swallow.  I’m used to it, however, it still sucks.  I think at this point, if I get good news, I’ll probably die from a heart attack.  Its been so long, I don’t remember what it feels like.

A question for you: Should I continue this blog?  I will base my decision on the comments I receive, so please let me know if you are interested in reading more or if I should stop.  Thanks.

P.S. I’m going to the Cardinals Game tonight.  Cards vs. Royals.  Go Cards!

See you soon!

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I was told yesterday that it is okay for my potential donors to call and get tested.  Thanks transplant team!  (I view my transplant team as a group of scrubs-wearing superheores that are going to swoop in and save me, Lupus Girl, from almost certain death.  What?  Leave me alone, I have an imagination.)  My friends that are going to get tested called and were told they were getting mailed a packet of forms to fill out.  Lupus Girl is of the opinion that there should be less form-filling and more kidney transplanting, but I think she’s biased. 

 How many forms does it take to get a transplant? I bet Natalie Cole could tell you, since she just got one.  Oh wait, she didn’t wait on the list like normal people, she used her celebrity status to get a kidney.  As you can tell, I’m a little annoyed by that.  Rich, powerful people need to start bringing awareness to THE LIST,and the importance of organ donation, not their own personal story.  I get it, believe me, I get it.  You are dying and you don’t want to wait if you can just use your wealth and power to get you an organ.  Well, this isn’t Lord of the Flies.  This isn’t every man for themselves. We live in a civilized society in which we take care of each other. Or at least that is the ideal, not always the case.  The truth is the rich use all kinds of shortcuts to get what they need first.  I know, because I am rich.  Why am I waiting on the list then, you ask? I do it because I believe in the idea behind the system, and at this point, thats all I’ve got. Honestly. 

More to come, but this is a busy time right now, what with getting on the list and all.  Must go get bloodwork!  Please bear with me and I promise to make more frequent posts as this all dies down in a few days.  Thanks for your patience.

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I got a phone call today from the Doc.  Next week I will be given a dose of a new chemo drug, Rituxan.  It is a one time infusion at the St. John’s Mercy Cancer Center.  The plan is I go in at 7am, get pumped full of drugs all day and get home by 7pm.  After this, he wants to wait 2 months and start me on Cellcept, the main drug after transplant, that I did not tolerate at all before.  Its a test run to see if I can tolerate it now, as I will be on it for the rest of my life.  I am guessing that during this time, everyone that wants to get tested will be able to do so, but I’m not sure what the deal is.  What I don’t understand is why this has to be so complicated.  I have people that are willing to get tested that are being told they have to wait.  As it stands now, they have received my paperwork, and I am waiting for a phone call from the transplant coordinator saying its ok for my potential donors to call.  That’s a lot of waiting and doing nothing.  As you’ve probably figured out, I am not a patient person, so the waiting thing, I’m not so good at.  

I went to mass at the Carmelite Monastery at 7am this morning.  Catholic Mass is long.  There is a lot of sitting, standing and kneeling.  I went home and tried the communion wafers and wine.  The wafers were kind of like a piece of cardboard and the wine, well, I’ve had better.  I feel that it is time to move on.  I could continue on with Catholicism, but I feel that it is not the right religion for me.  I just don’t.  I will be keeping my Rosary, though, just in case.  Next up, Quakers!!  

Oh. I forgot to tell you, I have a vitamin D deficiency. DUH, OF COURSE I DO.  I have to wear sunscreen every minute I am outside.  No sun, no vitamin D.  I have to take 50,000 units of vitamin D once a week for the next 8 weeks to keep my bones from cracking.  Bring on the supplemented Sunshine!!!

The post today is short as I am drugged on anti-nausea meds, and a little woozy.   See you tomorrow!!

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I’m back!  Did you miss me?  I needed to take care of a few things so I had to put the computer away for a while.  I filled out my paperwork and sent it in to the transplant office last week.  I found out this morning that there is a hold up with my paperwork and that my potential donors can’t get tested yet.  Seriously?  I don’t think my organs are going to stop failing because of a delay in processing paperwork.  Did I mention 6% functioning?!?  Can we speed things up a tad?  That would be awesome.  Thanks.  

Before I forget, Happy Birthday Satyen!!!!!

Today’s topic is: Us and Them.  Before I got sick, I never thought about anything important.  Granted, I was only 15, but still, the biggest problem I had to solve was having to depend on my brother, parents, or older friends to get around.  After I got sick, I noticed something disturbing.  There is an Us and Them mentality towards everything.  We all have it, whether we know it or not.  Us is anyone that we consider to be like us, and Them, well, they are everyone else.  This is true for everything-skin color, socioeconomic status, behavior, and worst of all, ability, or DISability.  I used to pride myself in the fact that I did not judge on skin color or wealth.  I had friends of all races and backgrounds.  I did discriminate on behavior, but that was acceptable, after all, if you act like a fool, expect to be treated like one.  To me, all races and socioeconomic backgrounds were part of Us. Even the elderly were part of Us, without them we would not exist.  I felt evolved.  I never thought I discriminated towards the disabled.  I was always patient with the mentally handicapped or the physically handicapped.  However, I always still thought of them as Them, a separate group.  The Handicapped. Little did I know that I did the worst thing of all.  Pity.  I felt sorry for them, those not like me.  I wasn’t helping because I sincerely wanted to, but to ease my guilt because I was glad it wasn’t me.  Thank God it wasn’t me.  Those poor people that couldn’t do all the normal things we could do.  They found even the smallest task challenging.  Life was a chore for Them.  They would never have the things all of Us take for granted.

Then I got sick.  All of a sudden, people started to give me that look.  Everyone wanted to help me.  People that were not nice to me before were striking up conversations.  This was high school and that just didn’t happen. What the fuck was going on here?  And then it dawned on me.  Pity.  I was no longer part of Us.  My membership had been revoked.  I was now part of Them, and They are to be helped and to be handled with care, as the members of Us do not want to feel cruel.

I bring this up now because I still have a hard time with it.  My mind works well, but my body is dying.  There are times that I wish my mind would go as well so I wouldn’t be as frustrated when my hands shake and I can’t type or lift a spoon, or when I can’t will myself out of bed because the pain is too great, or when I get that look.  I guess the worst thing is I feel as if I was cheated out of a life as a part of Us.  Cheated by myself, as it is my body that is attacking itself, and there is no one to blame.  

The Pink nuns were found at the Chapel of Mount Grace.  Thank you Chris Brennan.  They are the Sisters of Adoration and are very kind, and very pink.  Next up, Mass.  Also, I picked up communion wafers and wine from the Catholic Supply store.  I will be trying them tomorrow after mass.

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I took a break yesterday because I received more bad news.  My kidneys are functioning at a whopping 6%.  That six.  Yes,  I said 6.  Apparently my body is compensating for the deterioration as I have, pretty much, NO symptoms.  Its quite amazing.  My doctor said so.  I am severely anemic though and the Doc is worried about that.  I get the bumblebee shot every two weeks.  Its Arenesp, I call it the bumblebee shot cause it stings, bad, and then my whole arm is useless for a day.  After the bumblebee shot, I feel great, I wake up at 8am, I do all my errands, I stay up late, and I never get exhausted.  When you are severely anemic its like looking at everything through a fog, or basically like you’ve been up for two days with no sleep, all the time.  After Arenesp, that fog is lifted.  Unfortunately, the effects only last for a week.  

I was asked how I feel about the latest news.  I am surprisingly calm.  I learned a long time ago that worrying and getting angry doesn’t change anything.  What is going to happen is going to happen.  Of course I get a little upset when its always bad news.  Who doesn’t?  I find the best way to deal with it is to not change anything at all, just keep living my life.  That’s not true, sometimes I take a break from blogging and I just sit around and do nothing, but only for one day.  Then, I just continue to live my life.

I went to the Carmelite Monastery yesterday.  It was beautiful, but anti-climactic.  I did not see any pink nuns.  Actually, I saw no nuns at all.  The Chapel is open to the pubic until 5pm and there is a daily mass at 7am.  I did not make it to mass.  Apparently, if you don’t make it to mass your SOL on seeing the nuns.  I did not enter the chapel so perhaps the nuns were in there.  I will be revisiting the monastery on Friday in hopes of getting a few pictures, and seeing the pink sisters.  Yesterday, I just wanted to check the place out.  I noticed that the monastery takes up a lot of prime land here in Ladue- the priciest area in St. Louis, which leads me to this conclusion- The Catholic Church were the old school MBA’s, and this leads me to a question- What is the net worth of the Catholic Church?

P.S.  Go visit www.fuckyoupenguin.blogspot.com for a laugh.

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Where did we end last time… oh yes, August 12, 2007.  I was transferred via ambulance from Missouri Baptist to Barnes.  At MoBap I had my own room in the new wing.  It had a pull out couch and a flat screen TV.  It was pretty, had lots of light, and was super clean.  Barnes was another story all together.  When I got to Barnes, they had no beds available.  My stretcher was promptly placed in the hallway of the ER where I lay for the next 10 hours.  At this point, a bed was available.  I was put in a tiny  unpainted, concrete room with another patient.  All this is fine, I knew I was going from the 5-star resort of hospitals to the motel 6 of hospitals, but then I find out the other patient is an elderly lady with a staff infection.  I am on a large dose of Chemo, and I have an open wound from where I slashed my leg on something at MoBap.  This seems wrong to me, so I ask the nurse.  Her reply, “We have no rooms available except this one.”  Um.  Okay.  Let’s ask someone else.  I have the doctor called and she moves me to a room that miraculously opens up right when she decides its a good idea for me to move.  How convenient.  Barnes is a fantastic teaching hospital and a good place to go when you are fucked, like me.  That being said, they suck at their bedside manner.  The way Barnes works is that there are 4 admitting “teams”  with an attending, a fellow, residents and students.  The attending makes the decisions.  I ended up with a doctor that I couldn’t stand.  She was rude and vindictive.  She decided, upon meeting me for 5 minutes, that I was a drug seeker and needed to be weaned off of my pain meds immediately.  SERIOUSLY.  She went as far as to say that I was on such a high dose that methadone would be required when I left the hospital to get me off the pain meds.  She cut me off the IV pain medication and put me on a less strong drug, Oxycontin.  I am allergic to Oxycontin, and I found this out that night.  I went into respiratory distress.  My oxygen level went down to 70.  I was gasping for every breath, and they let me continue to do so all night, while still giving me the the Oxycontin.  Brilliant.  At 7am the resident walked in and proceeded to turn gray as he ordered me up to emergency dialysis.  The dialysis was to remove the Oxycontin from my blood completely.  As I sit in the dialysis room gasping and struggling for every breath, psycho doctor walks in with her med students.  She tells them, in front of me, that this is what a patient that is about about to go into respiratory failure looks like.  BITCH, I CAN HEAR YOU.  She has a syringe in her hand.  She puts it up to my dialysis tube and says that it is the drug that will ease my breathing and pretty much make me okay through the dialysis process.  Now, here’s where we get to the really cruel part,  she looks at her students, who are all pointedly avoiding looking at me, and asks if any body can tell her what she has, before she puts it in.  She waits for a response.  And waits.  I STILL CAN”T BREATHE.  No one speaks.  Finally she pushes in the medicine.  5 seconds later, I stop gasping.  I no longer have the weight on my chest and it finally feels like I’m not drowning anymore.  She switches me back to the IV pain meds, with a lecture.  Just so you know, when I left the hospital, I didn’t take my pain meds again for over 3 months.  Not a single pill.  I went back to see the doctor and she asked me how I was doing with stopping the pain meds.  I showed her the bottle and said I haven’t used a single one.  The look on her face was priceless.  

Tomorrow- Carmelite Monastery!  Don’t miss the Pink Nuns!

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Lupus Girl wants attention.  She showed up this weekend and refuses to leave.  I told her she has to leave but she kicked off her shoes and made herself at home.  Looks like the bitch is moving in.  Since I last posted, I have been ill,  and getting sicker.  I don’t know what is going on exactly, but my test results are coming back much worse than expected.  I didn’t even know this was possible, I thought I was at the worst, but apparently I was wrong.  The reason I bring this up is so you, the reader, know that if I don’t post for a few days, it means that I was admitted to the hospital.  Also, if a horrendously misspelled and nonsensical post goes up, I am posting from the hospital, on drugs, and can’t be held responsible.  I will say that it will probably be entertaining though.  I didn’t make it to mass today because it was Mother’s Day.  I spent the day with my mother.  This week I plan on visiting the Carmelite Monastery.  I hear they have pink nuns.  Well, not actually pink, that would be weird, but nuns in pink habits.  I thought all nuns had to wear black and white.  This is not true.  They get to pick.  Black and white is just the classic habit look.  Its the staple wardrobe choice, the not so little black dress of the nunnery world.  Ok, enough on that, now I’m just rambling.  

I have something I want to discuss with you.  I reread my posts and realized that my writing is kind of half-assed.  I’m sorry.  I will try harder to make my posts more entertaining and, well, coherent. I noticed that I have been lazy about grammar, sometimes ignoring rules on purpose because I think some of them are stupid, and other times just being too lazy to correct mistakes.  I will work on fixing that.  I know that I switch topics often during a post and I wanted to ask you if I should change that, or if its okay the way it is.  I think like this, so that’s why I have been writing like this, but if you would prefer, I’ll try and keep it to one topic per post.  Let me know your thoughts…

That is it for tonight, I am going to try to go to bed early as I am in pain this evening.  See you guys tomorrow when I continue my story.

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I changed the template again so that no there is NO confusion where to  leave Bids.  They go on the Bids page.  Simple.  I may be adding a form to make it even easier for the readers to leave bids, but I’ll see how this is for a few days.  Thanks Gina, for the tip, though, keep the suggestions coming, I appreciate your help!

P.S. Gina found Fez.  Yay! I’m glad you is safe, kitteh.

The Editor

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I’m dizzy.  I gave 16 vials of blood today for tests.  My veins are less than stellar after chemo so the nice lady had to stick me in my hand.  That vein blew after 2 vials.  She switched to the other arm and 25 minutes later, we were done.  I know this sounds bad, but it was actually pretty good for me, I’ve gone in and had 7 sticks before.  Just another day in the life… of Lupus Girl.  More on that later.

June 19, 2007.  I don’t even know where to begin.  This was the worst day of my life?  When I say this, the reaction I get is always the same:  ”Wouldn’t this be the second worst day, the first being the day I found out I had Lupus?”  No.  The first time around I had ignorance on my side.  Ignorance is a beautiful thing.  Its much easier to charge ahead when you have no idea what to expect.  On June 19, 2007, when I received my diagnosis, I knew exactly what I had in store for me.  3 years of hell and then maybe, if I was lucky, another 5 years of borrowed time.  I wasn’t lucky this time.  At first, I truly believed that I’d get better.  The doctors were optimistic.  I thought I’d do my time and I’d get back to my life.  You know like a prison sentence, only with meds instead of bars.  I just kept hoping I could go home.  The doctors kept pushing the release date back every time I asked. I was starting to get nervous.  Why couldn’t I go home?  I had already started chemo.  Things were supposed to start getting better.  ”Soon,”  they said.  ”We’re just waiting for you to stabilize a bit more,” they said.  ”We’re just waiting for the meds to kick in, ” they said.  In the mean time, everyone came to visit.  I spent my birthday in the hospital on July 29, 2007.  That hit me hard.  Birthdays are really special to me, not just mine, everyone’s.  I’m not sure how many more I get to celebrate with my family and friends so I kind of make a big deal out of them.  On my birthday, my friends and family turned my hospital room into a party.  Over 40 people came in during the course of the day.  I had 4 birthday cakes, none of which I could eat since I was on a liquid diet, but still, it was pretty awesome that everyone came together that way.  As time passed, I started to realize things were not getting better.  The nurses didn’t know what to do, it was pretty comical.  I was transferred from Missouri Baptist to Barnes on August 12, 2007.  Up until this point, I was just getting worse and no one could figure out why.

To be continued…

Okay, enough of memory lane for tonight.  I mentioned Lupus Girl earlier.  Lupus Girl, I’ve decided is my alter ego.  She fails at life.  Literally.  Also she wears a butterfly mask.  Its okay to laugh.  I am.  More on the adventures of Lupus Girl later.

Catholicism is moving much slower than anticipated.  I watched part of Dogma today.  Hopefully, tomorrow, I’ll have a review.  Also, I don’t like Pope Benedict.  I think condoms are a great idea for Africa. Sorry, we’ll have to agree to disagree your Holiness, (explain to me why the dude in the funny hat is Holy, again?)  I think condoms are where its at to cut down on the spread of AIDS.  I’m going with doctors on this one, not divine intervention, or “abstinence.”  No matter what, people are going to procreate.  In order to procreate, people are going to fuck.  Its what we do.  Naturally. Just like eating or breathing. God made it so.  Oh yeah, and the holocaust really did happen.  Allowing the deniers back in the Church, not cool.  One more thing, I think gay marriage should be allowed.  It doesn’t affect me in any way for gay people to get married, personally I think its hard enough to find someone in the world and I don’t think I have to right to tell anyone who to love, its not my place. I’m not attacking the Church or the Pope, I just disagree with some stuff.  That’s allowed, right?

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