Definitely in remission!

I am officially in remission!!! I saw my doctor yesterday and it is official. I will stay on certain meds long-term, although it would be nice to go off the prednisone and some others! I also will continue to follow my diet and take my blood pressure medicine. At the moment I am fighting this flu that is running rampant through my house, but I am miles better than I was a week ago. I also will continue the epogen shots as my red blood cells are not where they should be. Interestingly I did not realize the epogen stung because I had gotten them with the neuprogen and the pain from those overshadowed the stinging.

Now for the yarn! I had been miserable and was having a huge loll on the crochet/knitting front. I decided to do some washcloths to try to kickstart things. Here are the results! The kids have requested washcloths with their names on them, that will be the next project, along with finishing all the hats I have due. The heart cloth is from Nicole's pattern, found here.

It is very, very nice to be feeling so much better.

No more neoprogen!

As of yesterday I no longer have to get the neuprogen shots, WOOHOO!!! These were the more painful of the two. I am really hoping that all of my levels are up enough that I also will no longer need the epogen shots, but I won't find out until tomorrow.

It really looks like I am in remission and I cannot describe in words how great this feels. Incredible. I am waking up in the mornings with real energy, and making it through the days without having to nap. I do need a little downtime still, but I don't have that bone-tired exhaustion and it is amazing. I taught Sunday School today, went to church, out to lunch, have been able to clean my house and do laundry, I'm playing with my kids and still (mostly) have enough left to form sentences!

I did have a few reminders of the neuro failings today, when spelling the name Kia today at Sunday School I actually said Key-I-A. Key? Really?

I am so happy, so relieved, and so happy to be in this place. Just to be able to do normal daily activities is so nice and its a little funny to be happy about things like laundry, but it's so worth it.

She's baaack!

The title is what my husband said earlier tonight, as I was getting after the kids for fighting. Followed by "It is so good to not be the only one hollering at them!" LOL the things we celebrate. Yes, I am hollering at my kids again. Well, more like loud whispering as I still don't have much of a voice, but I woke up today and I swear I can actually feel my body healing. Incredible.

The bone pain is wicked, but my mouth is no longer swollen and the pain there is minimal. Especially compared to what it was a day or two ago. My throat is not as sore, and I am able to talk, although it can be hard to hear me. I have some holes in my tongue, a massive one on the side, from the canker sores and still soreness as they are healing, but they are HEALING.

I had a bit more energy today. Not a lot, but it's there and that's what counts. I had an appetite today! I haven't cared about food for DAYS, which for me is shocking. Now I just need to get my mouth healed so I can EAT! Still doing soft foods and soups, nothing spicy or that will aggravate the canker sores, but I'm miles better than I was a few days ago.

I had a blood draw today, hopefully I will get the results when I go in for my shots tomorrow, and I know progress is being made, I can FEEL it.

Incredible. So far no signs of vasculitis returning, I am starting to get my hopes up for remission. I can hardly imagine how I will be with energy. And I should get to keep my hair this round. ;)

Two shots today, very tired

I went and had my two shots. The epogen doesn't burn as much as the neuprogen, so that's good. I treated myself to some matzo ball soup from a great place near the hospital. Soup is my main food right now, as it requires no chewing, although I did have scrambled eggs and toast last night.

I wasn't able to sleep much at all last night or today and am exhausted. Not seeing a lot in the way of side effects, diarrhea and the bones aching is it for now. Opted out of going into work, hopefully tomorrow will be better, especially if the red blood and white blood cells start partying. My bones were really hurting today and I was tempted to call and beg for some sort of pain meds, especially after being awake last night from all the different pains, but I didn't. I'm not sure why exactly. I would be perfectly justified in asking for something, but I hesitate to ask.

My left arm still hurts from the neuprogen yesterday and my right is aching from the two shots today and I would dearly love to sleep for hours, but I'm not going to get my hopes up.

I do have a better perspective today and I know that when my immune system is restored and we can see for sure the vasculitis is in remission I will definitely be celebrating. Maybe that nice dinner the nurse suggested. I am trying to focus on the positive side of all this, that the vasculitis could be in remission and only six months after my ER visit. I keep warning everyone to watch out, if I am in remission and get my energy back they are all in trouble. It's weird to imagine what I will be like WITH energy though, it's been so long since I've had very much of it.

Please Sir, May I have another?

The one shot of neuprogen everyday is not cutting it. This news did not surprise me considering how awful I feel. They are now going to give me another shot in addition to to it on Mondays, Wednesdays, and Fridays. This is to boost my red blood cells as well. I once again forgot to ask my wbc test results and the name of the new shot so I have called back to ask if they could let me know.

I am absolutely miserable. Lots of pain, can't sleep, feel horrible and I am trying to spend time with my kids, get myself to the hospital each day and put in a few hours at work. Work has said that I can take as much time as I need, BUT we are already taking a huge cut in income for the time I am losing and there is so much to do as it is the end of the month it is easier to do myself than try to explain to someone else. Which would be extra excruciating given the horrible sore throat and canker sores. So, I drag myself up to the hospital, get the shot and/or blood test and now second shot, go to work-where my kids are, get a few hours in and we all go home where I take some more drugs and promptly crash. Until the mouth pain wakes me up again.

Eating hurts, I am having to make myself eat, at least I am on vitamins, but good gracious my diet is not as healthy as I'd like. It just hurts too much. I'm doing much better with hydration, since my ER trip I am mainly on water and some tea, and that has stayed the same, except in the more horrific stages of cankerpalooza when I couldn't bring myself to swallow unless I absolutely had to.

There are times I want to call and beg them to give some painkillers, something to knock me out, and shockingly times I've even thought I might be better off in the hospital. But, then I wouldn't get the snuggle time I do get with my kids and it would cost a bajillion dollars more and obviously my doctor thinks I am doing okay at home.

My husband has hit the end of his rope, stress wise, and I understand. I alternate between wanting him to just hold me and wanting to let him vent because I know it has to be hard to take on the role of EVERYTHING in the house, with only a few breaks here and there on top of a full time job and to see your spouse sick and hurting.

Rough times, rough times. I'm struggling, near tears too easily most of the time-more than my usual sappiness and really just wanting this to be over. It seems like just when I think it can't get any worse, it does. Although the optimist would reverse that and say that just when I think I have handled as much as I possibly can, I get an opportunity to handle something even more imposing. I am having a hard time dealing with my optimistic side. Pretty much squashed at the moment.

Optimism is wavering

I know there is a light at the end of this tunnel, but it seems farther and farther away. I now have a cold on top of all this, and as I have no immune system yet this is not good. I already have a hard time doing things with the infections in my mouth, it's like it saps any energy I have to fight that and now a cold and sore throat. The pain in my mouth wakes me up during the night, I cannot wait to have a full night's sleep.

The shots are still no fun, I go for daily visits to the hospital and every other day have my blood drawn and then get the shot. I always need a bandaid because my blood doesn't clot very well. Kind of interesting to see those little things.

It's hard to be told something so huge, like going off the cyclophosphamide, and be so excited to be healthy only to learn that the road to get there is a rough one. I just want to be better.

I'd love to see the white blood count come back higher today, but I'm doubting that with the onset of this cold. I guess we'll see.

Soooo, here is an update and potential good news!

It's been a crazy week and a half for me, whew. One of my sisters bought me a plane ticket to CA to visit her and my other sister and her family and our grandparents. My brother was also out there. I was blown away and it was so good to see them all. My sisters had last seen me in the hospital and right after, I was in pretty rough shape. Since then I have lost almost 40 lbs, I still have my struggles, but I look a lot better.

They were shocked. We surpised my grandparents, we went over for Sunday dinner, they were expecting my brother, I waited outside for them to all get in and then knocked on the door, my grandma opened it, couldn't make a sound she was so surprised and then started screaming My grandpa was sitting there with his mouth open. It was the best, really hilarious and fun.

My little nephew man is growing up, he is 2 and talking in fantastic sentences. We did quite of bit of playing together, and he can now ride his tricycle! I had so much fun out in the warm, beautiful weather seeing all of my family.

Then things got tough. I take it much easier these days than in the past, I have to as I've learned, and this trip was pretty darn relaxing. I had felt a canker sore or two coming on, this turned into 7 canker sores at once, and moved into my gums. Kablaam! I spent the last two days of the trip down for the count, in excruciating pain surviving with ibuprofen, orajel/anbesol, ice packs, and swishing with peroxide. I had an appt already with my doctor, went in and he said "That looks very painful, and very bad." and promptly fixed me up with some great medications for it all. AND he said that he thought this and my recent vomiting episodes could be due to the fact that my vasculitis is under control and now my immune system is being too suppressed. So, Thursday was last day on the cyclophosphamide. I wasn't excpecting this for at least another 6 months. I also found out my white blood cell count was very, very low, so I have to go for shots in the arm to boost that, as well as blood tests every other day.

Finally today I was able to up and actually do things. It has been really, really rough and I've been in and continue to be in a lot of pain, but I keep trying to think that this could be the beginning of me coming off all these meds and potentially living a "normal" life for awhile. So long as the vasculities doesn't come back or flare up.

I know this is incredibly long, but I needed to get on here and post, between as sick as I was, then trying to get everything done, then the trip, and the new sickness I haven't had time for ANYTHING. I am making myself be up and out with my family tonight because I have hated not even being able to talk to them-although that isn't a whole lot easier yet lol. Soon, soon.

Thank God for the bright side.

So cold.

Cold, cold, cold. It is just plain cold. Not wilds of Canada or Alaska cold, but still below zero freezing cold. Bleh. Need to go into work and have no motivation to go out into the cold. Don't want to warm up the car, put on coat, hats, and gloves, try not to fall on my ass on the icy sidewalk. I want none of it. I want comfy jammies, warm blanket, staying at home.

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The best christmas card ever

This is my grandma. We found this picture when we were planning her 80th birthday party this last September. My sister and I had it blown up especially for the party.

My mom took it further. She made it into a Christmas card and on the back she wrote Bah Humbug. Is it not the epitomy of how every woman feels on a super busy holiday?

My grandma shared with us that this picture was taken by my grandpa-supposedly of the tree, which is what we're sure he told her but really wanted to get a picture of her because he was a very funny man. They had both sets of parents visiting, and other family showed up on their doorstep, along with some friends. She said a neighbor was out of town and offered up her house for family to stay in. My grandma had four children, and along with the normal holiday craziness a house full to the brim with visitors. No wonder she was exhausted.

What's that I hear?

Is that the oh so quiet and soft sound of freshly washed blankets being tumbled around in glorious heat in my brand, spanking, new dryer?

Why YES, YES IT IS!

Ahhhhhhhhh. Sigggghhhh.

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Almost blew a gasket

Today a message was left on my answering machine stating the dryer was STILL not in and might not be delivered tomorrow. Folks, I was not happy. Let me preface this by saying that I think today we expect too many things in such a fast time frame because of the availability and immediacy of just about everything and I was more than happy to wait a reasonable amount of time for my new dryer to be delivered. Even after waiting and hearing the people in front of me be told their new dryer would be delivered the very next day. But, mine wasn't in stock in the store. I understood. I was surprised it would be there on Thursday given it wasn't in stock but was assured it would be. Then it wasn't.

The message today almost sent me over the edge. I am normally a reasonable person, but some things will set me off. Air-drying laundry for six people in the winter in the midwest for three weeks is one of those things. As I stood last night hanging and smoothing numerous small people shirts, socks, pants, and underwear and laying them across the drying rack in the best way to dry them as quickly as possible, I thought to myself "This should be the last time I have to do this for a good long while." It made the chore a tad more bearable.

Until the message today.

Instead of calling back right away, I decided to wait. There was still a possibility it could come in on a later shipment today. It would also be good to wait until I was more able to stay calm, especially since the poor guy leaving the message sounded like he was worried about the return call and really had tried all he could.

Thank goodness when I did call back that the dryer had come in! They will be able to deliver it tomorrow. Tomorrow I will either post in giddy happiness after using my brand, spanking, new dryer or be carted off to the nuthouse in a straitjacket mumbling about scratchy towels and impossible wrinkles and that farking drying rack.

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We have Caucus!

Tonight was the Iowa Caucus and the whole Blue family was there. Originally I wasn't sure about bringing the kids, but the husband was there and said others had brought so the kids and I headed over. As both Mr. Blue and I get into politics and they've seen us campaign in elections past they've heard bits and pieces about the caucus and candidates.

Apparently at the 2004 caucus for my city there were roughly 40 people total. Tonight there were over 300. About 80 of those were part of the county precinct, we were in the city precinct.

This was the first caucus my husband or I have been a part of it and it was pretty cool. There was much standing around and some boredom, but overall an interesting experience and good to get out there and represent ourselves. The kids were great, only a slight teeny tiny bit of whine or unrest and none of it was bothersome to anyone, which is a small miracle considering we were there for almost a few hours. They were able to be with us through the whole thing. It's pretty neat to have them learning these things and experiencing them at such young ages.

Both my husband and I were for Obama, unfortunately Hilary took my city. Obama came in second and Edwards was third. I was very happy to see Obama taking the state when we got home and saw the news.

There were two rounds of counts, the first where everyone went to their preferred candidate's area or to the undecided area. In our city with the turnout each candidate needed at least 31 votes to be considered viable. Biden, Kucinich, Dodd, and Gravel were out after the first round. At this point each side tries to get these votes to come over to the remaining three viable candidates. There were two undecided holdouts who ended up not choosing a candidate. I thought this was strange, but maybe there were hoping to be swayed and weren't or were just there to see how it works.

One of the common topics was that we were voting by choice this year and not by the lesser of evils, or the better of two but not optimum. There were ton of people who had never caucused before, from the young, to the old and it was really great to see so many invested in this. It was also really interesting to see how different people talked about or campaigned for their candidate either by being very vocal or quietly giving opinions, with facts or emotions. It was also a lot of fun to see the attempts to bring people over to each side and the hollering and cheering (which we were fully a part of) when someone was won over.

All in all a great experience and the kids really picked up on more and were more interested than I would've imagined. Although the five year old with his short attention span was really only excited about the cookies and the Biden sign he was convinced was an Obama sign that he brought home.

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Obligatory New Year's Post

Surprisingly we ended up going out for New Year's and celebrating with some friends of ours at one of their houses. Kid-friendly, lots of food, and some imbibing-I had a bit of champagne at midnight-and games. The kids had fun and we played a game called Loaded Questions. My mom had given it to us for Christmas and it turned out to be really a lot of fun.

From my earlier post you know that we had been fairly lame in our New Year's celebration planning and I haven't been feeling well, so we were going to stay low-key. Instead we were invited out and went and ended up having a really good time and brought the New Year in with a bang. I tend to be a homebody, but it was good to get out and be with others.

The kids go back to school tomorrow, they are excited to see their friends but not to have to get up early in the morning and out into the cold right away.

My new dryer was SUPPOSED to be delivered in the morning, instead we had a message saying it was not in stock and will not be delivered until TUESDAY, but if they get it in earlier they will call. I was not happy about this at all as I have not had a working dryer for a few weeks now and air-dryed towels in a dry winter house are very scratchy. Plus the kids go back to school and will need regularly washed clothes as they can't wear shorts and pajamas out of the house in the freezing cold Iowa weather. And there are SIX of us in this house and that is a lot of laundry. I am suspicious that the person who sold it to me knew it might not be here in time to be delivered tomorrow by the time it took him to look it up on the computer system, but I will give him the benefit of the doubt when I call tomorrow.

The good side is that I did not have to hurry to finish cleaning the laundry room out tonight. Work is crazy busy right now, but there is a lot of good things happening. We're hitting the big time as the computers are getting updated, networks set up correctly, and my office is being spruced up to be painted and reorganized. At the moment it is bare and sanded and things are piled in various other rooms and I'm working from all sorts of places but I'll take it as things are getting DONE! I'm also told I might be getting a new graphics type publishing program, probably nothing fancy but it'll be much nicer than creating everything in Word. GAH.

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Oh my goodness I am on a podcast!

I was a guest on It's Not Us, It's You! and the episode is finally out. Number 26. I am listening to it as I type and so far I think my voice is very ghey and I laugh a lot and talk a lot. I am also typing this on the newly downloaded Scribefire, so we'll see how that goes. I tried to add the INUIY link but I do not see it and have no idea where it went. So, this is what you get.

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My link did not show so here you go: INUIY

Not only are my husband and I getting old...

we are also big dorks. It started with my husband saying "You know, it's New Year's Eve tomorrow and we have no plans. How lame is that?" I agree, but I cut us a little slack for a few reasons. We have four children and things have been crazy and busy and we've been sick so it's been nice just being home. Also, New Year's Eve is also one of my sisters' birthdays and we usually spend it with her and our family. This is one of the few years we will not be celebrating with her as they stayed in California for the holidays this year. I have to admit I've been a little sad about that and really haven't made an effort to plan anything.

Also, we are getting older. We are not OLD people yet, but already in our early thirties we can't hang like we used to. Gone are the days of working, athleticism, and partying till the wee hours. I'm sure much of the tiredness can be attributed to my illness and how it affects both of us, along with working and having four children but it is still funny to realize how boring we've become.

That being said, here is a sad, sad story to show our lame dorky oldness. The boys got these really cool robots for Christmas and when each of us saw them on Christmas day we had the same reaction, we couldn't wait to chase the cats with them. We'd forgotten this until tonight when the husband said "Hey we haven't gotten the cats with those robots yet!" and both of us got up out of our chairs in excitement to do so. Sadly, we are so lame that the cat we tried it on wouldn't play. She merely glared at us with disdain.

Sigh.

what? pictures?!?

YES! I have a brand spanking new digital camera and I am very excited about it. These are pictures of the hats I am working on and the blanket I'm making for my sister. :)

GAH GRRR ARRGH!

I am officially sick with a cold, which is no good when you have no immune system. I am becoming very, very growly and I do not want to have any obligations, but as I have a family and a job and it is almost Christmas obligations abound. I will need to call for another antibiotic to hopefully fix this latest illness.

And, my dryer has stopped working. Upon searching the internets I have diagnosed it as a dryer door switch problem. According to the fix it sites this is a fairly simple repair. According to my history and handy chick learning it will not be at all simple. It will be something I would start and then totally jack up and get frustrated with. Why is my husband not handier? He is on the bad list at the moment because I found that he has taken ALL of the tools from MY toolbox and put them somewhere that is NOT my toolbox and I cannot even find a screwdriver at the moment. The power drill is dead and the battery charger is MIA. I am highly irritated by all of this and it is not at all good to not have a working dryer with four children in the house.

My son is hilarious.

The Sunday School Christmas Program went very well, the kids were all very cute and did a great job. My older three had speaking parts, and for the older son this was the first Sunday School program he actually participated in. He is now 7 and has ADAMANTLY refused in years past. This year he VOLUNTEERED for a speaking part and did it very well. I was shocked and very, very proud. The girls had a speaking part each and one together, which was really adorable. Also funny was Arenne nudging Abbie over over to the correct spot. The nudging was really close to a shove and got some laughter from the audience.

My Sunday School class was very cute and adorable and did really well. My youngest was one of the loud singing microphone lovers and even threw his hands up in a ta-daa fashion at the end.

Still, the funniest moment was while we were sitting and watching and Colin, who was wearing black pants, black vest, white button up shirt, and tie, turned to the kid next to him and said quietly, "Do I look like a waitress?"

Venus & Box

are some seriously crafty girls, and have my favorite podcast ever, It's Not Us, It's You. They had a salt dough ornament smackdown and the results were great. I give them both mad props as our salt dough ghosts were more like salt dough blobs.

I love them both, and was not looking forward to having to choose one of them as the winner, until I saw the Bear Jesus ornament. It was over. Venus did a nice job on the boobs of her chickie though.

Go here to see their entries and vote. And check out the podcast if you haven't already!

Oh Christmas Tree, Oh Christmas Tree!

We're putting up the christmas tree tonight, finally! I'd also like to get some lights up on the house, except the husband is opposed to them. Scrooge. I think the kids may just be excited enough to get him to do it though.

The cold is biting and I'm over the ice, but the snow is really pretty. The youngest threw himself down in it right off to make a snow angel and soon learned the lesson of only doing that when wearing snowpants with your coat. I've also decided that whoever steals the socks also takes the gloves and hats. No matter how many I buy we end up with only a few mismatched pairs when it's time to leave the house. I've tried lots of tricks, including a bin that the kids can just throw them into right by the door, but nothing works. Maybe I should just duct tape them right onto the coats.

So the Christmas tree trimming is tonight and tomorrow is the kids program at Sunday School. I teach the preschool/kindergarten group, who are singing the old standard Away In a Manger, complete with motions. It's cute, as small people usually are.

Today I need to go in and do a bunch of work I wasn't able to get done this week, all things needing done by tomorrow for church. Should be pretty exciting and hopefully there won't be too many snags. Hopefully.

This blog is really boring, and I so need to get some pics up, at least if I get a post up it helps, right? RIGHT?!?