Wednesday, December 22, 2010

First week down

Oh my gosh...Christmas is in like 3 days! Did I mention I am not done shopping? I know, I know..its totally my fault. I always wait until the last minute.

I got through the first week of my new job. It was a lot to learn, but such a joy to do. Alex is a great little girl. Her happiness is contagious. Seeing her learn even the little things makes me so happy. Her little sister Ryan is still in the eat and sleep stage of life, gotta admit I am kind of jealous :) .

I still do a little work for the old family I worked for, so it is great to still get to see them and be a part of their family. Plus I got an awesome Christmas bonus..which is always nice.

Can't wait to spend Christmas Eve and Christmas with my family. I am majorly missing my family members that have passed on...I hope Christmas in Heaven is magical for them too.

Next week: I have two appointments. Tuesday is my first injections of botox in my legs. Still a little scared about this, but we will see. Thursday I will meet my new Physical Therapist and have our first session.

Just because everyone else gets to show off their adorable kids...I am going to show off mine :P ::drum roll please::

Meet my baby girl....Hope! She is my 3 year old Albino Boxer...Yes she is cuddling with a stuffed elephant. Spoiled is her middle name.
Hope and I send you love and hugs this holiday season!

Saturday, December 11, 2010

yum...Pumpkin Pie ice cream :)

Okay so the title has nothing to do with my post, but I really want some Pumpkin Pie ice cream. LOL. Have you ever tried it?? If not, you should.

Guess what?? I got the job!! Yay! Does happy dance! I will be watching Alex who has Spinal Bifidia. She is two years old and is a super cute girl. I will also watch her baby sister Ryan who 3 months old. I am excited to start on Wednesday. The family seems great and was really accepting of the fact that I have CP (unlike other families who would not hire me) and saw it as a good thing because I could relate to their daughter. My disability doesn't affect my ability to care for kids, and anything I have trouble with I just adapt it to make it easier for me. I love working with children (typical or non-typical children) and watching them because the best to their abilities. Ever child deserves to have someone who believes in them and I believe in every child I meet (or read about on a blog :) ).

I finally started my Christmas shopping today. I know, I really need to stop waiting until the last minute for this stuff, but I also need to win the lottery for this stuff. No one is really going to get big gifts from me this year because I just don't have the money for it. Medical bills have just drained me this year. I just want to spend the holiday with my mom and my friends. Thats all I need.

I went to my neurology appointment. Always an eventful trip to say the least. First we talked about how the Baclofen really doesn't seem to be doing what it could be for the spacisity. So she gave me a new drug...I can't think of what it is called right now, if you would like to know, just ask and I will look at the bottle for ya. She also thinks that it is time to do Botox injections in my calfs. She knew I was not found of Botox and it is something we have been going back and fourth on for months, but she thinks we are running out of options. The problem is I either walk on the side of my feet or my feet turn all the way in to the center. This is painful and causes me to fall a lot. Its attractive to try and find a boyfriend with bruises all over your body and falling all the time haha :) . She also wants me to go to a PT that specializes in neurological damage. I am just a mess I guess.

I am checking out a few options for school, so I know if I am making the right decision when it comes time to decide whether I want to continue on with the program I am in or not.

Oh and Bree...I sat outside and a few answers I needed...thanks <3

Sunday, December 5, 2010

Failure...opening other doors?

Been going to school since April to become an OTA has had its ups and downs. Classes have been super hard at some times. The hardest being Anatomy 2. I tried my hardest to make it through it this semester but didn't make it. I ended up with a 75% and needed a 77% to pass. Damn it (excuse my language, but I was so close)!! In my school if you don't pass a class you have to wait for the next group of classes to come through before you can take it again. So basically I have to wait at least six months to go back to school, to take Anatomy 2 again and then I have to join a whole other class to finish out my program. Boo on all sides LOL! I will miss my friends the most, I had a really supportive class this time around and will totally miss seeing them everyday.

Now I am not sure what I am going to do, as six months is a long time away and I live my life one day at a time. Right now I am searching for a new job and that is my priority right now. I have a job interview tomorrow for a nanny job with a special needs child so wish me luck.

As if I will go back to school? maybe, maybe not. Never know what life has in store for me, but I am willing to hold my head high and take things as they come.

I have a neurologist appointment tomorrow...I will also let ya know how that goes lol.


Wednesday, November 24, 2010

Gooble Gooble

HAPPY THANKSGIVING EVERYONE!!! I am so greatful my friends (that includes my blog friends) and family. I hope everyone has an amazing holiday and I will update my blog either this coming weekend or next week.

Love and hugs,

Saturday, November 13, 2010

Serious post time

Okay so its been a rough weekend and its only saturday.

On Thursday I woke up feeling really sick. My throat felt really sore and my chest hurt. Thank you who ever shared their cold with me (note the sarcasm). Anyway, I tried to stand up and I noticed that my legs felt like they weighed a million pounds and were really wobbly to stand on. I let it go thinking I was just really tired. I called into school and took it fairly easy for the day. Friday it got worse. I could stand on my legs at all. Any pressure on them sent pain through my body. My mom took me to the doctor who really didn't have any clue what it was. But said that she thought it had something to do with my CP. She put me on Lyrica and said to see if that helped. The other thought was that it could have been some of reaction to the flu shot mixed with my CP and medication. Not sure we will ever know the answer.

We need do x-rays and the one thing we did notice is that my hips are getting worse, it looks like bone is rubbing onto bone. So hip surgery maybe in my near future.

Anyway, here is where I need your opinion. My dream is to work with kids with special needs and I will never give up that dream. The problem is currently I am in school to be an Occupational Therapist Assistant. I really like it and I love the idea of helping kids in that way. The problem is I am not sure if my CP will allow me to do it. At this point it seems as things have been getting worse and doctors aren't really sure why. Can I really become an OTA or is it a dream that is way to far out of reach? How can I help a child if I am just as disabled as they are? Opinions please!

My other option I was thinking about was becoming a special education teacher...but its just thought at this point.

oh and my legs feel better today. I can stand on them, still a little wobbly but better.


Monday, November 8, 2010

Music is love

Best weekend Ever!! So for people that don't really know me I am a total music freak. A rock chick to be exact :)

My best friend Sheri and I went a concert to see two of my favorite bands Mayday Parade and Breathe Carolina. I love being at a show. No one cares that I am disabled. No one cares I walk funny, hold my hands funny or lose my words sometimes. I spent my night jumping up and down and singing at the top of my lungs. I felt free and like me!!

On to other news I need a new job...nanny job is ending soon :(

love and Hugs,

Wednesday, November 3, 2010

fall = cold time for me

I love fall weather, totally not a fan of all the germs around here. Since I started back in school I have been sick every other week. Bring on my plastic bubble please :) Currently I think I have an ear infection. Not sure I want to go to the doctor yet, may see if goes away in a couple of days. The next time I go to my new doctor I am going to talk her about how to boost my immune system, other than just taking supplements, cause I do that now. If anyone has any suggestions I would love to hear them.

So I never reported about my new doctor. Her name is Dr. Ene. She is a doctor and professor and deals with adults with CP. She seemed really nice and had a lot of ideas. One being counseling. She says that she can see I am having a difficult time with my disability and that it might help if I had someone to talk to. She asked me if I thought I would ever find someone to love me even though I have a disability...I told her no and she said I was wrong. Sometimes I don't tell people I date that I have CP, I just pray that they don't notice I walk funny or always have my hands in fists. Makes me sound really pathetic doesn't it.

The doctor increased my dose of Baclofen. She says that it will take about six weeks to take effect. So far I see no difference, its been 3 weeks. Baclofen also makes me sleepy, so I am not a fan. She also mentioned a surgical procedure that would but a Baclofen pump into me that would allow me to inject the medicine directly into my spine. This is suppose to make it work faster and keep it from going into my brain, which makes the side effect of sleepiness go away. The idea of surgery scares me, so she said there are a few other medications I can try before then. Opinions on this are welcome.

I can't wait until I have a break from school. Its not until December, but I am counting down the days.

Love and Hugs,

Tuesday, October 19, 2010 it friday yet :)

So its been a week since Urijah was born and went to heaven. I think my nephew took a little piece of me when he passed away. His mommy and daddy are very strong and tell his big sister about him daily. Grandma misses him a lot, we talk about him daily in out house. I am afraid I will forget him and that scares me. I hope that never happens.

Tomorrow is my first appointment with my new neurologist for my Cerebral Palsy. I left my last one when he told me I had CP to just give up and deal with it. I am not one to have a pity party but sometimes it really sucks to have CP. I am hoping the new neurologist has ideas to stop my seizures and can help with my muscle pain. We will see...I will keep you posted

My OT has ordered me, my resting arm splints so I will be wearing those when I sleep starting Friday. I laughed and told her it was a good thing I sleep alone, those babies could do some damage if I hit someone in my sleep. LOL! Hopefully they will help my hands straighten out from their lovely fisted position and allow me to write and type easier and longer without pain.

School is getting really hard..We have a test everyday almost and my brain just doesn't process all this information all that quickly. I don't get any assistance for my disability, because I am to prideful as awful as that sounds (picture your 3 year old in that I can do it myself stage...yep I am still in that stage, thank you very much). I am starting to think I might need some extra help or a tutor or a new brain...hell I don't know.

Friday is my day if anyone can make it friday already that would be awesome thanks!

love and hugs,


Wednesday, October 13, 2010

Forever Auntie's Baby Boy

Yesterday was the hardest day I have ever been through. My brother's son Urijah C. Negri was born and passed away on October 12, 2010. Urijah is the most beautiful boy I have ever seen and I know he has made the most beautiful angel now. I am so thankful I was allowed to hold him and give him a kiss goodbye.

Urijah had Digeorge Syndrome and heart defects....he was a fighter, he never gave up! I remember when my sister in law told me she said she was pregnant. I told her he was a boy and that he was going to be mine....she thought I was crazy for thinking he was a boy when she just found out she was pregnant, but I knew he was a boy and he was going to be Auntie's boy!

Urijah- Auntie loves you forever...You are in my heart forever baby boy!

Tuesday, October 5, 2010

some days are just plain rough

Today is one of those days when I wish I could have just stayed in bed.

School is getting really hard, and having learning disabilities makes it about ten times harder than it is for a "normal" person. I failed my last two exams and I have another exam that I am not feeling so great about on Thursday. So if you have some good luck wishes you can spare...please send them my way:)

I meet my new OT today. I am a little nervous. I have a lot anxiety about meeting new doctors, I get tired of feeling like a science experiment. We are going to work on my hands first, because they are causing me the most pain and interfere with my life right now.

My brain is so exhausted right now. I will update you later on how my appointment goes.

Love ya,

Thursday, September 30, 2010

okay so I fell off the earth, okay not really

Sorry it has been forever since I wrote in this thing...things kind of get a bit crazy around here. so I will try to catch you all up in one blog with out boring you all to death.

lets see where to start...went back to college. Good idea? not so sure. I have been considering it for for a long time and I just felt like I wasn't getting any younger and I was tired of living pay check to pay check. The one thing I have always wanted to do is help kids with disabilities like mine. So I am working on becoming an Occupational Therapist Assistant. Due to my disability learning does not always come easy to me, this sometime makes school a little frustrating for me and sometimes I think I frustrate my teachers. I almost wish I had more supportive teachers, I don't think they like having the "disabled student" in their classes. Honestly I think they think I am not going to make it through the program and that I will make an awful OTA. But they don't understand how much I really want to help kids and how much I want to celebrate the little moments with them when they get to learn little things like tieing their shoes, how to jump, etc.... I can do this. Its my dream and I want people to realize just because we have CP doesn't mean we don't have dreams even though some of CP kid's don't talk they have dreams to!!! They need someone to believe in them and I will be that person.

okay next subject....CP update...stupid disease :)
So tired of hearing doctors say well your disease has no cure....blah blah blah! To which I would like to scream "Yeah well find ONE!" So I have been having issues with my hands now that I have been using them more in school with writing and typing. So the pain sucks right now and trying to figure out some solutions for that right now. On a brighter side I found a new neurologist that treats adult CP patients in CO. She is suppose to be one of the best in the United States. So hopefully she can help with seizures and all that fun stuff. That appointment is on the 20th so I will keep you posted.

In other brother and his fiance are expecting a boy in February. Very excited to be an auntie again. My friend Sheri had surgery please pray that she has a speedy recovery.

Sending love and hugs your way,

Sunday, June 20, 2010

When it rains..It pours

So everything is going wrong...anyone surprised by this?

I went back to school in April to be an OTA...which is great I like the idea of being an OTA and helping kids that are like me. The program is really fast paced and is hard to keep up.

I have been having seizures more frequently. They scare the hell out of me and I really don't know what to do about them because obviously my meds aren't helping. My migraines aren't helping either, they are now lasting four days at a time. I am trying to get an appointment for this week to see the neurologist to see if I can try a new medicine.

On top of it all my best friend is mad at me...when really I thought I was doing what would cause less drama. My mom was sick so I decided to stay home with her instead of going to her party. Her boyfriend didn't want me there anyway or he would have invited me there anyway.

agh bad day

Thursday, April 1, 2010

Sleep...What is that?!?

My doctor keeps saying I need to sleep more. I keep asking him to help me with that, but nothing seems to help me. I think I sleep at most two hours a night. Sometimes I feel like I do my best thinking at night. Does anyone else think better at night?

I still have no clue what do about insurance. I checked into my Dad's cobra insurance it would cost me 300 a month which I just don't have at the moment, but may just have to figure out. I am not sure I can qualify for disability or even if I want to try. I spoke to the insurance company and they are looking into a few of the claims to see if they can actually cover them now. So everyone cross their fingers please.

Until my insurance is figured out I can no longer go to PT. Which sucks because I need someone to motivate me. Anyone want to send me an email each day yelling at me to do my stretches?? hahahah!!! I am not lazy, just get consumed by life and forget to take care of myself.

18 Days till school starts...getting very nervous

Tuesday, March 30, 2010

Sunshine and Routines

This week seems to already seem really long. It is Tuesday and I am already ready for Friday. I have been fighting with insurance companies for months trying to get them to at least help pay for some of my medical bills. They keep stating that Cerebral Palsy is a "pre-existing condition". Here is states in their policy that even if you have had the condition before you most be have been aware of it and received medical treatment for it. Cerebral Palsy wasn't even a thought until December of last year. I have had my current insurance since November. Hopefully everything will be straightened out soon because the bills are stacking up.

The sun was actually shinning today. It was beautiful and great to be outdoors. I took the little girl I nanny to the park. She loved going down the slide and swinging in the baby slide. I spoke to my PT and he said the best thing for me to do is to stay active. So I decided the walk to the park and back would do me good. I still have a hard time walking long distances (anything that takes longer that 15 minutes to walk). But I fill like my strength is getting a little better. Hills are still horrible for me, but I did one today.

I have to be honest and say that the routine of my job is getting really old. I am need of a vacation, but money will not allow that anytime soon. Hopefully starting school in April will help because it will change things up a bit and I will be working less.

How is everyone doing?

Love, Live, Laugh

Thursday, March 25, 2010

Spring...Are you there??

So I swear it is suppose to be spring, then why is there snow outside my door?!? Why does Mr. Weather man state there will be more tomorrow? Oh Colorado weather you bother me so. Basically I walked outside and stepped on a patch of ice and hit my whole left side of my body on the concrete. Let's just say my body is not happy with me right now. Just a few bruises and scrapes, so I should be okay.

This Sunday is my Mom's birthday...I won't say how old she is on because she might kill me :). going to make her a cake it should be fun.

I took the little girl I nanny to her Occupational Therapist appointment today, she was so cute and totally showed off for me. She is starting to learn to eat on her own and I am so proud of her. She has really come a long way.

I got a new back pack for school, Yes I am adult and I should not get excited about little things like that, but I am starting a new career at a new schools so I need a new back pack :)


Saturday, March 20, 2010

I wanted an answer...right?

This is probably going to end up being more of a rant then an actual blog but hey it's my writting so I can do what I want LOL.

So after months and months of doctors appointments I get an answer, does it make things better? not exactly. I have Cerebral Palsy. Yep I said it, most people are diagnosed around birth aparently my doctors were idiots and either didn't know or decided my parents didn't need to know. Lovely, Right? Anyway, apparently they think during birth something happened that caused damaged to my brain so I have damage to my central nervous system. This causes my Nerves to not send messages to my muscles, making some movements hard and ackward. This makes sense and explains why I am definatly not like other people. I hold my hands differently, I have a little bit of a speech impairment, I walk on my toes or on the side of my feet...I could go on, but I don't feel like telling all my flaws today.

So where do I go from here...well I started Physical Therapy a couple of weeks ago, its a little weird for me knowing that I am learning how to walk correctly at 25 years old. Did you know writing the alphabet with your feet is actually working all the muscles in your feet? It does, give it a try. I am also on a new medication. So far my body is having a little difficult time adjusting to it, but I was warned that it would take about a month to reach its full benefits. So I will keep you posted.

In other news, I got to see my friend Bryce on Tuesday. His band Kill Paradise played a proud of him. Even though it sucks cause he is never home. I start School on the 19th. I am excited but nervous. I am excited to start learning about Occupational Therapy and starting to help special needs kids.

Hope all is well.

Sunday, January 17, 2010

me+ doctor = science experiment

So I went to see a neurology specialist...which was good and bad. He seems to think I think what I could have thats causing the numbness and pain in my feet, legs and arms could be any number of things....the bad is that none of the things really have a great outcome. I am holding my breath that it is something treatable and curable.

First course of action is a brain and spine scan scheduled for tomorrow. I am rather terrified of this idea, but have been assured that it is the first step in helping me find out whats wrong. He also put me on meds that are to treat MS or spinal cord injuries. So far I don't see a huge difference in pain but I told him I would try it for a little while. The pain has been getting worse all over including my back now over the last two weeks.

In other news...I am addicted to cupcakes...I eat one everyday for breakfast. Some how I don't think it is really helping my diet but o'well.

Sunday, January 3, 2010

Lazy Sunday

I decided I would start a new blow for the new year. I am so glad 2009 is over. My year was filled with one struggle after another. 2010 will be much better I am sure of it.

Here are a few of my goals for this year:
1) lose 30 pounds and stay healthy through out the year
2) Switch schools and start working towards becoming a Occupational Therapist for kids with special needs
3) worry less about money
4) Travel more
5) learn how to cook

This is just the small list but it's a start right? I worked out for an hour today so #1 is underway.

I am still having trouble with my feet and legs, so far the leg doctor says surgery will not fix my problem. No one can figure out why at 25 years old, I wake up not being able to move my left foot at all. Doctors have thrown around all sorts of ideas and horrible diseases I may have. Not want I want to hear, let me tell you. All I know is that the pain in my legs and feet is awful and I need a solution. Next doctors appointment is January 14th for a neurologist.

Live, love, laugh