Living with NF

Well Zach’s hernia surgery went pretty smoothly. He’s still sore but is finally starting to get around again. I’m thankful everything has gone so well.

In other news, I have an appointment scheduled in July with a neurofibromatosis specialist. Neurofibromatosis is a disease that affects everyone differently, so all I can do is tell you how it has affected me. I’ve known I’ve had it all my life. Up until about 4 years ago, the only thing I knew about my nf was that I got it from my dad and that I had some café au lait spots on my body. The spots never really bothered me because they aren’t super noticeable and kind of just look like birthmarks.

In college, things began to change a little. I started noticing a couple of painful tumors on my ribs and in my abdomen. The tumors were hard to see, but you could definitely feel them. They were quite painful when bumped or if I laid on one, like while trying to relax or sleep. I looked at getting them removed (about 4 or 5) but didn’t because it was hard to schedule any appointments without missing any “college.” Neurofibromatosis is a progressive disease. That means it gets worse as time goes on. Since my nf has been pretty mild all my life, I’ve never really seen a doctor about it. But now, I’m pretty sure I have around 20 tumors (probably more) and I really think that I need to get a doctor that can actively monitor it. Nf can lead to things like cancer. While cancer from nf is pretty rare, I just don’t think it’s a good idea anymore to do guesswork on how many tumors I have, or how much they have grown.  I’m super excited about seeing this specialist and getting my nf under control.  Since they’re in a lot of places now, it can be hard to get comfortable without hitting or smushing one somewhere. I mean there are only so many ways I can lay when they are on my head, both sides of my ribcage, abdomen and armpits. Now I’m noticing that a lot of my shirts are bothering me due to a few newly discovered tumors.

I’m honestly not trying to complain or get you to feel sorry for me. I’m really blessed that my nf has been so mild for so long. Do any googling on nf and you will see how bad it can get. I’m excited about seeing this doctor. This will be the first doctor I’ve seen that really knows much about the disease. I’ve been doing some reading on him, and he’s supposed to be one of the leading experts on nf. I’m blessed to live pretty close to MD Anderson. They have one of only few nf clinics in Texas. After I see Dr. S in July, I will blog about my appointment. Have you heard of nf or do you know someone with it?

Our “Friends” and Appointments

Well the ducks that live around our apartment aren’t exactly our friends, but we like to call them that. Our apartment is near a river lake manmade body of water and it is just hilarious to see the ducks waddling around in the parking lot like they own the place. I swear that they have meetings sometimes. Once I saw two ducks running across the parking lot to meet with another group of ducks.  They are quite good at catching goldfish too. We recently discovered a new odd friend that doesn’t belong. This one was a small but tall bird with a crazy mohawk  feather-do. It also only comes out at night. I did some research, which to my generation is google, and discovered that the new bird in town is a yellow-crowned night heron.

                                                                Source

                                              Isn’t it cute? We think so!

The next week is going to be busy.  Zach is having hernia surgery, which is lame. I know it’s not the worst thing in the world, but it still kind of stinks. I’m sure the work he does played a part in it. You can’t exactly say it doesn’t when someone lifts lots of heavy things daily and gets a hernia at the ripe old age of 25. But thankfully, his work has been very helpful and understanding through it all. Also, I may have an upcoming appointment with a doctor that specializes in a rare condition that I have. I’m actually really excited about it (weird, I know!), but more on that when I schedule the appointment. Hopefully I will be able to start the scheduling process tomorrow. By the way, it has nothing to do with being a woman or babies in case you were wondering.

5 Question Friday

1. How close to your childhood dreams is your life now?
I'm on the right track, but haven't quite made it. I have an amazing husband and a college degree (Gig Em). I'm a teacher. Now all I have left, is the be a mommy part. I can't wait until that stage and neither can Zach. That one won't be for a while...

2. What is one must have item for the summer? Shorts. It's so HOT here in the summer. This summer, I'm also loving my TOMS. They are so comfy and light and perfect for summer.

 
3. Do you have your kids stay up on school stuff during summer vacation? (Or, if you don't have kiddos, did your parents make you keep up on school stuff during summer?) No kids yet, but when we have kids I do want to start doing activities with them when they are young, and this includes summer. I don’t want to homeschool, but I know that learning happens at home too. My parents didn’t make us do anything, but I read a TON, which is supposed to prevent/lessen the “summer slide.”

4. Do you can or freeze fresh produce? Our freezer is tiny and currently can’t handle stocking up on things. One day?

5. Do you get ready for the day first thing in the morning? If I’m working or have somewhere to be, yes. If not, then mostly I do not. I like to be comfortable, especially if I’m working around the house. The hideous pile of laundry I recently spoke of is gone.

Feeling Crafty

Well it's day 2 into my summer vacation and I was feeling the need to cover this box (that I've been saving for a couple of months) to use in our bathroom to contain the clutter. I used a red box from a gift set I received, and covered it with wrapping paper and card stock to match our bathroom.

Here is the result:

No, this is not our bathroom. It's our living room. A lot of things in our apartment are green and brown... Anyway, I'm pretty pleased with the results, especially since I'm not very talented in the crafting/artsy area. However, I was thinking that I should seal it somehow since it will be in the bathroom. Any suggestions as to what I should use? Modge Podge? Ha, I've heard of that but I don't actually know what it is. So yes, please assist.

Speaking of crafts and time off from my little firsties, these are some projects I would like to do this summer:

• Make/buy a ton of felt stories. I LOVE this Etsy site and all the things she has for felt stories. There is no way I can make them look this good.
• Laminate and make literacy centers.
• Find cheap headphones and personal CD players for a listening center.
• Make a felt board. (This really means get my husband to make one, which he has already happily volunteered to do.)
• Organize our closet and the laundry "closet". Sadly the 2 feet of space between the washer and dryer has become storage for our clean clothes. It's just impossible to hang anything up when the closet is so disorganized, and it's impossible to organize the closet when there is one tiny closet for the entire apartment. We have NO storage. Ha, we're storing our wok in the drawer under the dryer...
• Organize the pantry/spice cabinet. (No idea how to tackle this one.)
• Take up sewing?

Well we shall see what projects get accomplished. First on the list will be the pile of clean laundry.