One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Sunday, April 24, 2011

My Montage 4/24/11 at

Birthday pictures as promised. I am the one taking the pictures, I should stop hiding Zoey is going to think I missed her birthday.

Trucking Along

Happy Happy Easter to everyone!

Time seems to be moving in slow motion for me right now. I am still in an MS fog and trying to rest as much as I can. It was a nice spring break, however I am dreading going back to work tomorrow. I am still feeling terrible and still irritated with how my boss treated me when I was out. I am scared to go back and then I end up so stressed I have another relapse. I don't even know if you can call it another relapse the IV does not seem to be helping this time. Still dizzy, still weak legs, then you add the steroids to it and that is another list of side effects.

As of now my husband and I are about 80% sure I am going to take a leave of absence next year and file for retirement disability. The only thing making it not 100% sure is the retirement people will not call me back to answer some questions and get the ball rolling.

I am scared about what it will do to us financially, and scared about the unknown. I know without a doubt though that this is the best thing for my health and for Zoey too, but I am going to miss my students, and my co-workers, and having somewhere to go every morning loaded down with lots and lots of coffee. :)

Here are some pictures of Zoey posing with her daddy and learning how to ride her bike. I have managed to get outside with her in short spurts which has been good for me. And...Zoey is an outside girl. I am sure outside is where we will be spending the next few months.

Thursday, April 14, 2011

My Montage 4/14/11 at

Our trip to the Childrens museum in March

Life as I know it.

I know it has been a long time between blogs. I still have a ton of pictures to share with everyone and they are coming I promise. The last two weeks life has taken a funny turn and I am needing to get my feelings out.

Zoey: Zoey is doing great however, she just cultured MRSA. I am scared and wondering when we are going to catch a break. Zoey is not acting sick but she does wheeze quite a bit more and she is coughing a lot of stuff up. We are treating it aggressive. Lots of antibiotics, bleach baths, nose sprays, antibacterial lotion on her g tube site. And the last week of this regiment we are going to have to go into hour house and sanitize from top to bottom. So if you are in the area we will be having a cleaning party at my know.

This morning Zoey woke up with bad bad belly ache. She had her legs pulled to her belly, screamed bloody murder when we touched her. I thought she had an intestinal blockage. Well, she farted non stop for about a half hour and then decided from about 2-3 it was time to play. As mommy went to work this morning on no sleep, she was sleeping the day away happy in her bed. :)

Me: Things have been really rough no me. I never did avoid the IV. I got the IV soumedrol in last WED. That is big steroid they pump into MS patients to help re-leave they symptoms of MS. I was dizzy, my legs did not work well, I waited too long for the IV. The problem came with getting the IV in my arms. My veins do not work. They finally got me in for a picc placement. He tried 4 times it did not work. I ended up with an IV in my neck and it worked once they came out. They finally got it in on the bottom of my wrist where it hurts really bad, and it worked for 4 more days by some miracle. I had to have my arm in a splint to keep it from coming out. My mom came to help and change Zoey's diapers and cook and pretty much take care of me and Zoey so Randy could work because he has a new job and no sick time. This was the last time with the IV problems, I am going to look into having a port put in my chest. I always thought it would be Zoey needing one but Mommy beat her to it.

The IV's have left me feeling sick and dizzy and just feeling gross but that will improve everyday. My legs still don't want to work all that well but they are better as long as I don't go up stairs.

So.... we had this big IV week, MRSA diagnosis week and everything else. And I came back to work after a week and a half out having to do a program with my Kindergartners and First Graders. I had been gone so I was stressed about getting that together and close to tears because I don't feel well and I am frustrated with my health and not being able to do anything about it......and then.... my boss chose this day to pull me into her office and get on my case about how much I have been gone the last couple of years. Well, do ya think? Two big illnesses in my family, they are lucky I get to work at all some weeks. They told me I am protected by FMLA so I still have a job but they are limiting my catastrophic leave next year. In my school district teachers can donate time to the catastrophic leave bank for other teachers who do not have anymore time off so they can still get paid when they are gone. It is a wonderful thing for people like me who have major stuff going on. Well now they will still cover it next year a little but not like it has been. Basically they are forcing me to go on disability because financially it would be better for us now. 

My husband and I were drawing on the conclusion on our own that I needed to go the disability route just because it would be better for me, Zoey and my kids at school. It is not fair to them how much I am gone, however I am really mad at how they went about it. They hid under the Family Medical Leave Act saying I still had a job but then decided to make it really hard for me to stay. 

So I am finding myself at a crossroads. I am ending the school year and transitioning to stay at home mom if I can get all of the paperwork done for disability. I worked hard for this career and got a masters degree in it. I am going to have to redefine myself and that is scary to me. I am scared of the unknown.

Zoey is my miracle and she is a BIG reason for this decision. She has cultured Staph, MRSA, psuedo, and more that I don't remember. It is better for her to not be in daycare. I am excited at the prospect of staying with her, but scared at the same time.

Friday, April 1, 2011

Mommy For Madeline: Extreme Home Makeover: CF

Mommy For Madeline: Extreme Home Makeover: CF: "So, a family needs YOUR help. The Blanchard Family has applied to Extreme Makeover Home Edition Maine. They are a very deserving family who ..."