Saturday, July 18, 2009

Hi Yall!

Man, its been almost a month since I last posted!

Tim got into Djibouti today!! I am soooo freaking relived he made it ok. We got to talk with him on Skype this morning and he looks great. You would never know that he just got in from a 40 hour trip! He says its very hot, but not humid.

This is pretty much what his trip was like.
2 hours to New York
12 hour layover in JFK
7 hour flight to Paris
13 hour layover there
and then a 6 hour flight to Djibouti!

I would need to sleep for 12 days to recover!

Court and I are doing good. I have actually been so busy that I haven't had time to sit and think about it. Thursday I had a baby shower right after work and then Friday I was off work but had 3 doctors appointments, and then I went out for dinner and drinks with some friends. My parents just came and got Court to go to a cook out so I am going to go get my hair trimmed and get a pedicure. I was supposed to go to a friends , fathers wedding reception. but she never contacted me.Then tomorrow, we have a house warming party to go to. Whew. I tell ya, it seems like I have plans in spurts!

Those of you who have FB may have seen some statues from me last week that were very sad and dark. I had a really really bad few days. lasting from Thursday to Saturday. I did not want to get out of bed and would not eat. It was the worse it had ever been, there was even a moment in the elevator that I wished it would just plummet to the ground. It was scary. It has been about 14 years since I had thoughts like that. So I went to the doc yesterday and we decided that the celexa just wasn't going to do it for me anymore. We are going to try Prozac now. It is the last generic of that category that I haven't tried. If it doesn't work we will go with Lexepro, but I hope the prozac helps cause the lexepro is a tier 3 drug and $50 a month! Prozac is $4! but if we have too, well will do the lexepro. People ask me why I would want to "put all that out there" well I was why not? its part of my life and a big part of this blog!

My breathing is been kinda "different" lately. I am having trouble exhaling completely and my chest is real tight. Now I am asmathic, so that is normal in high humidity but it just seems worse this year. so I m gonna go see my pulmonoligist soon too.

Mobility continues to worsen. We are building a nice deck and ramp out back soon. We have a corner lot so I will start using the driveway and the back door once it is built. We are starting the wheelchair process. I have to get the paperwork from my PT at Duke and then we will take that to a local Medical Equipment place and they will work out the details with my insurance on what they will and wont cover. My DME (durable medical equipment) allowance is 80%, and then the MDA will chip in up to $2000. So its a good chance I wont pay anything! woo hoo. I am hoping for a "travel" power wheelchair. They are about the size of your typical wheelchair but it has a motor as well. That way I can still use the wheels to do it manually, which I want to do as long as I can for exercise, but I have the option of the motor. and it can also be pushed. and it will fold up to fit in the car. But I don't know if that will be an option. I guess we will see.

Well that's about all I have for now!
Later gators!

Saturday, June 20, 2009

the ugly side of life

Courtney has become so defiant, and strong willed, and hard headed, and brillant, and she does not listen to me and I feel that I am ineffective as a parent in so many ways. I feel I can not discipline her properly because by the time I get up and get to her its been 2 minutes. And I cant pick her up and put her in time out. And I am just so stressed out. Dealing with raising a 2 yr is hard enough but throw in this disease and it is 500% harder. I hate the feeling of boo-hoo, feel bad for poor ole me. I hate not being able to do stuff. I am just so mad, that this is my life.
Work is crazy. They have done layoffs so we are reduced in staff yet business is picking up and I feel like I am busting my ass and that it is getting me absolutely no where. But then I think well who cares about progressing at work, I'm gonna have to go out on disability eventually anyway, so no use in trying to "climb that ladder" And I really do enjoy my job. I love my colleagues and even the work is interesting and challenging me still.
And right now I feel like total crap because Courtney just told me she had to go poop and ran to the bathroom but I am such a horrible mother that I told her to go in her pull up cause I don't want to get up right now. Who the heck does that to a newly potty trained toddler? but I am so tired, and so exhausted already today and it is not even 1030am.
I am so tired of not being able to sit on the couch with my husband and watch TV, we are growing farther and farther apart and its all because of me. I miss him. I miss us. It is not fair to Tim or myself. It is just so not fair. I want my life back. This disease is ruining me, not just physically, but emotionally.
I am freaking out about Tim going to Africa. Even though my parents are right down the street, they shouldn't have to come to my rescue all the time. I'm so worried about being here alone with her, and I am so scared of him being in Africa. And my mom and dad left for a cruise yesterday and wont be back till next Saturday so that freaks me out a bit. I am 29 years old, I should not have to rely on my mom so much. And my sweet, beautiful, smart, little sister is in a horrible relation ship and he is ruining her. We are all so scared for her, but he is her first serious boyfriend and any of us who have been there done that, know how that is. And if you read this I am sorry if you get upset but it is how I feel and how everyone feels and you just do not realize how much hurt is being caused to the ones who truly love you. I just really need a vacation from it all.
I was gonna go on vacation next month to Chicago to spend a long weekend with some of the best ladies anyone could know. But true to my luck, prices jumped over $100 per ticket. But I guess it is for the best cause I dont think I could even get out of a plane seat. And I wish we could go take Court to California to spend time with Grammy and Bobo, but again, because of me, its not gonna happen.
I have dreams that I am doing things that I can not do and will never be able to do again, like playing tag or hide and seek, coaching little league, even taking a walk around the block. And in the dreams I am so happy and my little girl is laughing and having fun and I am happy and smiling, and then I wake up and face a world where none of that is possible and the smiles fade, and the laughter disappears and I am back into the reality that is my existence.
And I am begging to worry because Courtney has been exhibiting signs of diabetes for some time now and I have such a large presence of both type I and type II on both sides, and I am so worried. This poor child has got enough on her plate with me as her mother. and I love her so damn much but she can make me so freaking angry sometimes and I yell at her and I hate yelling at her. And I feel so bad.
All week I had been planning a fun day. I had made some baby shower invites for a friend and made $20. So, I planned we were gonna go to the bank, cash the check and get court a pop-pop, than go to Michael's and pick out some new supplies for our crafts collection. Manny was going to come over and we were going to make egg carton caterpillars and picture frames for pappy for fathers day. And we were going to play in the pool and sprinkler and eat Popsicles. I had been looking forward to this all week. But off course, starting at 6am, Courtney is getting in to anything and everything, doing things she knows she is not permitted to do and telling me no, and running from me and throwing herself on the floor so i cant get to her. She managed to lose all her fun privileges for the WHOLE day in less than 2 hours. which of course means "I" lose out as well.
So here I am, sitting on the computer, typing this long post, crying, while Courtney is eating her easy mac that just 3 minutes earlier was all over the floor because she knocked it off the table. (this time was purly and accident) Thank goodness for the dog or else it would have sat there till Tim came home because cleaning stuff up off the floor is just one of many many things this disease has robbed from me.
If your still with me, I know I probably sounded incoherent and retarded and horrible but I just had to let it out.

Monday, May 25, 2009

Happy Memorial Day.

On this Memorial Day we should all take a moment to be grateful for all that our military do for us. Whether it be fallen heroes, vets, active duty, retired, reserves, whoever. You may or may not believe in what we are fighting for , but you should always believe in who is doing the fighting.
This weekend, we attend 2 going away/deployment cookouts for a friend of ours. Matt is in the reserves and has been called up to go to Iraq for 18 months. We will all miss him and offer all of our support for him, his wife Leah, and daughter Sofia. Please keep this family in your thoughts and prayers.

The cookouts were a blast! I have a chair that I take with me that is very lightweight and is easy for me to get in and out of. It also has a little fold out table on the side. My parents got it for me a couple of years ago and it has become a staple in my social life. I am able to take this chair to peoples houses or to parks and not have to worry about not having a seat that I can get up and down from. I saves me from tons of anxiety when invited places.

Courtney went to the cookout on Saturday as it was a family thing. She had an absolute blast! She got to play on a nice big swing set and there were lots of boys and girls for her to play with. We were there until 9pm and that was the latest she had ever been out! She kept running up to me and saying "it dark outside mom".

The cookout on Sunday was an adult only get together. That was tons of fun! The friends house we were at always offer up a good time! The one thing I am most excited about is I got to get in the hot tub and relax! I was so stoked that I was able to get in and out. It took 3 people to help, but we made it work! It was great! Well that's all I have for now. Here's a few pics of court playing at the cookout.

Sunday, May 17, 2009

Pics from the wedding!

Her are pics as promised!!

The back of Courtneys dress.
Look at those curls!

Could this be any cuter?

Tim and I.

Tim getting his drink on so he can do his speech!
The groom Wayne is beside him.

Courtney eating brocoli.
It is the ONLY veggie she will eat!

Family pic. We dont get these often.

I bribed her with Jelly Beans to get her down the aisle!


Courtney and Mama.

Courtney and Daddy.

You are not alone. I am not alone.

A friend from high school whom I just recently regained contact with through face book, so graciously shared a story with me ( actually us) via a comment on a previous post. She reminded me of one of the main reasons why I wanted to start this blog. To let other young people, especially young mothers know, WE ARE NOT ALONE. I AM NOT ALONE.
For a while now I have been all over the Internet looking for support groups or something for young mothers with a disability. I have been unable to find anything really. It seems to me as if it is treated as a Taboo or something. I wanted to share my experiences so that when another young person out there finds them self feeling alone, they can do a web search and find me! I know I am only one person but if I have to live with this disease at least I can advocate to others that it can be done. Thank you LauraLee for sharing and I hope you do not mind me calling you out!

Saturday, May 16, 2009

I hope you dance

WHEW! it has been a long day. We just got home at around 1045pm. Courtney was sooo freaking adorable and did such a good job. I will post a pic or two once I find my camera cord.
Tim was the best man and did such a wonderfull job. I was so proud of him. He did very well on the speech and ad libed really well. Everyone seemed to enjoy it.

Now, since this is a blog about my day to day life with Pompe, let me tell you the challenges I faced today. We arrived at the church and the Bride and half the bridesmaids had not arrived yet. After I got Court dressed I had to keep her occupied and within my sight longer than I had planned on having to. For the average person, not really a problem but for me, pretty dang tough.
The seats in the church were very low so I knew once I sat down, I would be down till the end. Threre would be no jumping up to chase the kid. Thankfully Mom and Dad were there to help.
When It was time to head to the reception, it was POURING! Not being able to run meant I got wetter than I would have had I been able to run to the car.
The reception hall was on the 2nd floor. There were no elevators so I had to climb 2 flights of stairs. The design of the stairwell, witch was pretty narrow with rail on both side, made it easier for me to get up than I had expected. The seats were your standard folding chair height. I sat mostly but was able to get up fairly easily as long as I took my shows off to grip the floor with my feet and "launch" myself up. The part that got to me the most tonight was not being able to dance. I love to dance. 2-3 years ago I would have been cha-cha-sliding with the best of them! I had to sit and watch everyone dance and tap my foot. There were times when i imagined myself out there dancing but than snaped back into releaity. I did manage half a song slow dance with my husband and that was nice. So when your friend, husband/wife, boyfriend/girlfriend, anyone, asks you to dance, get up and dance. You never know what the future holds and when you may not have the option.

It Wedding Day!

Not mine obviously. Our good friends Wayne and Erica. Tim is the bestman and Courtney is the flower girl! I really hope she does well. I know she is only 2.5 and you can only expect but so much from a child her age, but I hope she does well. I also hope that her hair cooperates! It can be awfully crazy sometimes. I will post again tonight or tomorrow and let everyone know how it went.