I know, I KNOW! I am the worst blogger. I think life just keeps me busy and then I had 4 great months where I didn't have to blog anything! And now...
I had been backed off to once-a-month blood tests with the promise in January that I'd be able to not see Dr. K again until July. JULY! Life can finally start getting back to normal!
I went in for my monthly blood test on February 4th to be told that my count was 2,000. The nurse freaked a little, not letting me leave until she talked to the doctor. Thankfully, they did not make me go to the hospital for platelets, but put me on a dose of Dex. I went back Friday and was up to 49,000. Went back Tuesday and was 16,000. I saw Dr. K on Thursday (the 12th) and she decided to put me on hydroxychloroquine in an attempt to get me off steroids. It's an anti-malarial drug that has been used in other auto-immune disorders such as Rheumatoid Arthritis and Lupus. The drug worked! By the following Tuesday I was up to 92,000 after taking it Friday through Sunday. There was a problem though and that was headaches. Debilitating headaches. And headaches that were CLEARLY related to the medication. I would wake up fine and take the first dose. Get a headache which would last most of the day. I'd take the 2nd dose late afternoon, early evening and by 7:00 or 8:00 be laying on the couch completely out of commission. That's just not okay when you have 3 kids that need dinner and baths and bedtime routines. I called Monday (the 16th) and they told me to stop taking it and come in on Tuesday to see the doctor again. NOW, I am taking azathioprine, and anti-rejection drug for organ transplant patients! I'll be honest, I am starting to feel a little like a crash test dummy for drugs. But, it seems to be working. I started taking that on Tuesday and yesterday my count was 164,000, which is the highest it's been in months. Praise the Lord! So far, the only side-effect I've had with the azathioprine (I should really earn money for learning how to pronounce all these drugs) is an upset stomach, but Zantac seems to take care of that pretty quickly.
I'm going to go for now...we're heading out to look at a new house today (our landlords are trying to sell the house we're currently in) and we need to get little people dressed. I'll update on the kids and the fam later! Promise!!
Saturday, February 21, 2009
Tuesday, November 18, 2008
Lazy Tuesday Morning
I'm sitting here drinking my coffee (which, I have no idea why on earth I waited until 10 to start drinking coffee!) , Hunter's watching Wall-E (which we raced out this morning to get after we dropped Will off at school - He's been saving a duplicate birthday present to exchange for the DVD when it came out and has been patiently waiting for a month now), Olivia is taking her morning nape, and I just am not feeling well. I know I said that I think of all these grand things to blog about and how to word them perfectly, but it seems every time I sit down at the computer, my mind goes blank. Or, the news is just so horrible, I'm not at liberty to share it with the world wide web. Sigh.
My count dropped last week to 12,000, which meant another round of steroids. I haven't had to treat in over 4 months and I know I should be thankful for that. And I am. But I think, in a way, that not taking the steroids has made it harder to deal with the side-effects when I DO have to take them. It's been a long week. I started taking Zoloft for anxiety, when I was taking steroids regularly and it was awesome. It totally helped and even though I hated being on one more drug, it made life tolerable. As life calmed down, and I was taking the steroids less and less, I started feeling just 'medicated' and had my Dr. switch me to Lexapro which is not nearly as strong, and has fewer side-effects. I'm noticing, though, that while Lexapro is great for day to day (I don't think I really even need it on a daily basis) it is not effective at ALL while I'm on the steroid. I struggled with so much chemically induced anxiety this week, that the battle has honestly worn me out. Steroids suck. I noticed this week too, (I guess sometimes you need a break from it all to really see how your body is reacting) that I feel tired and weak when my blood is at war with itself. That part really gets me discouraged. I could deal with a blood disorder on a semi-regular basis (though, I'd clearly rather not) if it didn't have such drastic physical side-effects that affect my ability to keep up with my 'work'.
Another frustrating thing is that all the things I think "I want to start doing this when I feel better..." keep getting pushed back further and further.
So, now, with all this in mind, I'm going to finish my coffee and fold some laundry before we have to leave to get Will from Kindergarten. I'll put up some new pictures when my laptop gets back today or tomorrow!
My count dropped last week to 12,000, which meant another round of steroids. I haven't had to treat in over 4 months and I know I should be thankful for that. And I am. But I think, in a way, that not taking the steroids has made it harder to deal with the side-effects when I DO have to take them. It's been a long week. I started taking Zoloft for anxiety, when I was taking steroids regularly and it was awesome. It totally helped and even though I hated being on one more drug, it made life tolerable. As life calmed down, and I was taking the steroids less and less, I started feeling just 'medicated' and had my Dr. switch me to Lexapro which is not nearly as strong, and has fewer side-effects. I'm noticing, though, that while Lexapro is great for day to day (I don't think I really even need it on a daily basis) it is not effective at ALL while I'm on the steroid. I struggled with so much chemically induced anxiety this week, that the battle has honestly worn me out. Steroids suck. I noticed this week too, (I guess sometimes you need a break from it all to really see how your body is reacting) that I feel tired and weak when my blood is at war with itself. That part really gets me discouraged. I could deal with a blood disorder on a semi-regular basis (though, I'd clearly rather not) if it didn't have such drastic physical side-effects that affect my ability to keep up with my 'work'.
Another frustrating thing is that all the things I think "I want to start doing this when I feel better..." keep getting pushed back further and further.
So, now, with all this in mind, I'm going to finish my coffee and fold some laundry before we have to leave to get Will from Kindergarten. I'll put up some new pictures when my laptop gets back today or tomorrow!
Wednesday, November 5, 2008
Random (Hopefully) Useful Information
I know I suck at blogging. Bottom line. I have great thoughts while I'm away from the house on topics I'd like to blog about, think about how to put the thoughts together eloquently and come home with excitement and great intentions. But, then I get home and my 3 children and piles of housework and laundry suddenly come to the forefront of my schedule, and blogging gets pushed back.
Anyway, I have a minute while the oven pre-heats so I wanted to share my thoughts about my new favorite thing!
I was watching Oprah a few weeks ago and this lady was talking about how she can save up to 70% on her grocery bill. I was schocked and amazed and realized that even though I had no way to save 70% right off the bat, I could for sure start clipping coupons and planning my meals around the sales, and not making a meal list then buying everything full price. I also decided shopping in bulk would be a great idea as things go on sale (her idea, not really mine) but meat is especially hard for me because of freezer burn. Enter "Ziplock Vaccum Freezer System". For $11 I got the pump that sucks the air out and some quart sized bags. Love it. I figure I can write "Chicken" on the bag and reuse it over and over by writing the date in tiny print on one side and crossing it out each time the meat is replaced.
Also, my platelets dropped from 93k to 43k in 2 weeks. Still okay though, and no treatment necessary!
Anyway, I have a minute while the oven pre-heats so I wanted to share my thoughts about my new favorite thing!
I was watching Oprah a few weeks ago and this lady was talking about how she can save up to 70% on her grocery bill. I was schocked and amazed and realized that even though I had no way to save 70% right off the bat, I could for sure start clipping coupons and planning my meals around the sales, and not making a meal list then buying everything full price. I also decided shopping in bulk would be a great idea as things go on sale (her idea, not really mine) but meat is especially hard for me because of freezer burn. Enter "Ziplock Vaccum Freezer System". For $11 I got the pump that sucks the air out and some quart sized bags. Love it. I figure I can write "Chicken" on the bag and reuse it over and over by writing the date in tiny print on one side and crossing it out each time the meat is replaced.
Also, my platelets dropped from 93k to 43k in 2 weeks. Still okay though, and no treatment necessary!
Monday, October 13, 2008
Hunter & Livi turn 3 and 1!
We had a big double Birthday party for Hunter and Olivia this weekend since their Birthdays are a week apart (They are 6 days short of 2 years apart in age). Since it was Livi's first, we invited lots and lots of people and we had fun! It was a little chaotic (I helped Livi open presents and Jenee helped Hunter, so I have no idea what he got from whom!), but I love family gatherings, so it was well worth it! Here are a few pictures from the party:
A post-party bottle.
Skippyjon Jones!
Mmmmm. Cake!
Will...stealing a present and running.
Thank you to everyone who was able to come and make the kids' Birthdays so much fun!
I suck at blogging.
Here's the deal. As a teenager, going into college and as a young, single adult, I always tried writing in journals. I would start and do it for a couple days, then quit. After I got married, there were many reasons I wouldn't want to share so much of what was on my mind with other people, that I would only journal when I was frustrated, as a way of venting. I wish I was better...but there are other areas in my life I'm trying to discipline right now, and writing, just isn't one of them. Hopefully, someday.
Tuesday, October 7, 2008
Happy Birthday Olivia!
From 5 pounds 7 ounces, down to 4 pounds, 15 ounces to all grown up at one year old! I cannot believe how fast this last year has flown by. In so many ways, I am glad I kept a low profile and we stayed home so much, just the 4 of us (5 when Joel wasn't working!). Her early entrance into the world and stay in the N.I.C.U. was unimaginable at the time it happened, but I think it made us stronger as a family.
Olivia is such a healthy, active little girl and has been a joy to us during this hard, hard year. She quite simply is the perfect third child. So laid back, so easy-going, almost always happy and ready to goof around with her brothers anytime, anywhere. We are so blessed by our little girl, and that's truly what she is now...a little girl.
Saturday, September 27, 2008
First Day of School!
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