"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch



Monday, May 14, 2012

Two Years Later

I started dialysis two years ago today. I'm pretty emotional about it. I keep looking back at the past two years instead of looking forward. Of course, I know I should be thinking about how lucky I am and how much I've gained since 2010. Here are a few things that I can be happy about: Anna's health and growth since she was born, my friends and family and the help they gave us, the community and what they've done for us, Debby...Debby...Debby, and oh, yeah, my health. I didn't ever think that I was going to die. But looking back, I'm pretty sure other people thought I was going to. So, this is the end. I am making my final post today. Thanks for reading and thanks for being a silent support. Thank you.

Monday, April 23, 2012

Coming to an End

I haven't been keeping up with my blog the way I would like to. Things are pretty much back to normal and I don't have alot of time to post. I think that this blog may be coming to an end very soon. It's sad, really. Taking the time to type all of my issues and concerns has been a comfort through all of this mess. I'll miss the ability to complain and vent. But it's almost time to turn the page...to a page where I won't have as many issues or as many things to be sad and angry about. It's been almost 2 years since I got sick, and I think I'm about ready to move forward.

Tuesday, March 27, 2012

A Picture of Health

Yep, they are talking about me. I'm a "picture of health." Kidna makes you chuckle, doesn't it? Everything looks good! The doc even said I could stop taking my Nexium and Calcium, so that's two fewer pills and some money saved. Nice!

Tuesday, March 20, 2012

Good News

I took Anna to the doctor for her eyes yesterday. Everything is fine. She does not have a lazy eye. I guess babies tend to have a wide bridge of the nose and it can be asymmetrical. So one side of her nose covers up more of the white of her eye than the other making it look lazy or turned in. But it's nothing to worry about. She is, however, slightly near-sighted (suprise) and will need glasses sometime in the next few years. We know that was coming. Back in 6 months to recheck. Hopefully everything will still be good!

Thursday, March 15, 2012

Finally

I think I'm finally over the cold that I've had since the beginning of February. I was put on another antibiotic and it seems to be working. Finally! Anna gets her eyes checked on Monday...fingers crossed that we don't have a little pirate next week. Jason has finally started his diabetes education. I think he's glad that he finally has. They told him that he can have more carbs than we initially thought. We had spaghetti last night and his sugar was 103. That's really good. So, we'll have more spaghetti!!

Friday, March 9, 2012

Happy World Kidney Day!

March 8th was World Kidney Day. It is meant to bring attention to kidney disease and kidney donation. I only heard about it when I was watching TV and saw that Nick Cannon has Lupus Nephritus which is an autoimmune disease that only attacks your kidneys. He seems to be doing well, as am I. I saw my Sjogrens doctor on Monday and she said I'm good! I have no signs of Sjogrens and she said that I can try to get off of my steriod. It will be the first time in 3 years that I'll be off of this terrible drug. I say terrible, but it really is a wonder drug that has a lot of terrible side effects. On the other hand, she did say that I tested positive for Lupus again. But, here's how it works. If you have a "score" of 0 to 5 then you are negative for Lupus. Six through 10 means they can't tell for sure. Then 11 thru whatever is positive. My number was 13. But...she said the number can go as high as "we aren't even able to count that high." So, in the grand scheme of things my Lupus is very mild and she doesn't even want to treat me for it. I'm starting to think that the immune suppressant drugs that I'm on for the kidney transplant are acutally helping the autoimmune disease, too. We'll see...

Friday, March 2, 2012

Lots Going On

Since my last post I've had a birthday, so has Alli, I've had a dentist appointment and a root canal. Jason has won bowling coach of the year and is now briging one of his bowlers to State. Anna and Alli have been to the doctor two or three times for a lingering cough. Jason and I have had a cold, mine is still in progress and it has been nearly 4 weeks. This month I have an appointment with my Sjogren's doctor, an appointment for Anna's eyes and an appointment with the kidney docs. Fun, fun. All seems to be going well, though. Just really busy and stressed out. Can't wait till bowling is over and we are done with cold season.

Thursday, February 9, 2012

Poor Anna's Eyes

Nothing for sure yet, but I think Anna has a lazy eye. So sad. We're going to get her checked out in March, but in the meantime I can only picture her running around all cute...with an eyepatch. They say that sometimes the eyepatch method can take a year for the eye to be corrected. The other option is surgery, I guess. But that's me jumping the gun. I'm liking a picture. Let me know if you think it looks like she has a lazy eye. They just don't alway point in the same direction.

Friday, February 3, 2012

High Creatnine Means...

Possible kidney failure. Yup. It's not a good thing at all. And mine has been creeping up over my last few visits to the doctor. We were about to schedule a biopsy to see what's going on, but the doctor decided to have me drink more (about a gallon and a half of water a day) and then have my blood drawn again. So I went in on Thursday morning before school and had the blood drawn. I was nervous wreck waiting to hear from them. When I got the call during 2nd bell they told me that my creatnine is now better than ever. So, I guess I was a bit dehydrated. I suppose I'm going to have to drink a gallon and a half of water every day. That means peeing between every class...nearly 15 times a day. I guess it's better than diaylsis!

Thursday, January 19, 2012

Routine

Those of you who know me well know how much I love a routine, a plan, a list of things I can check off and feel like I've accomplished something. Now that things are "normal" I have my routine back again...and I love it! Up at 5:40, out the door by 6:30, a full school day, home by 4:00, Alli's homework, dinner, pack lunches, get kids clothes together on the kitchen table for the next morning, upstairs for kids baths, pajamas, cuddle with everyone in our bed, kids in bed by 9:00, watch TV and go to sleep. It's the same thing every weekday and I'm so glad that my day no longer includes dialysis.

Friday, January 13, 2012

Photo Book

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Wednesday, January 11, 2012

Feeling Good

My hip pain is decreasing every day! It's feeling pretty good. And I had a kidney check-up on Monday. Things are good! My creatinine is higher than it was at the beginning, but not too high. We're going to keep an eye on it, but I don't have to go back to see the doctor until February 13th. That's 5 weeks! I will have to get blood checked once in between, though. I was told today that a student from Oak Hills is having a kidney transplant on February 2nd. I couldn't believe it...someone younger than me! He got a mosquito bite several years ago and it progressivly made his kidneys go bad. He just started dialysis the other day. But thank God his mom is a match and the surgery will be here soon. Keep Tyler in your prayers.

Thursday, January 5, 2012

Maybe Not

The orthopedic doctor isn't convinced that it's a fracture. The spot is really close to a joint and there is alot of inflammation surrounding it. So he thinks it might be related to the Sjogren's. He said that a cortisone shot doens't help with autoimmune stuff. Thank goodness! Have you ever had a cortisone shot before? HUGE needles! And there isn't really anything to do with a fracture in the same spot, either. We're just going to wait it out, take pain meds, and go back to see him if it gets worse. It really does feel better each day, so I'm not worried so much. Just have to take it easy...

Tuesday, January 3, 2012

Insufficiency Sacrum Fracture

Sounds bad, doesn't it? It could be worse. My MRI on Friday was to rule out Avascular Necrosis. That's when you take steroids for too long and you get a blood clot in the "ball" of your hip bone. That causes blood to stop flowing through your bone and your bone starts to die. So, it's not that...that's the good news. The bad news is that I have a fracture of my sacrum (the triangular bone at the base of your spine). It's insufficient not because it's not a big deal. It's because my bones are insufficient for holding my weight. The steroids caused my bones to thin and my bones couldn't keep up with my weight gain. I'm only 134 lbs, but I guess gaining 30 pounds in 3 months wasn't the best way to go. So, I've read that the only treatment is heat and pain meds. I might have to wear a brace, but probably not crutches. I see an orthopedic doctor on Wednesday out in Anderson. We'll see what they have to say. I'll keep you posted.