Saturday, January 17, 2015

Family is where life begins & love never ends

"A baby will make love stronger, days shorter, nights shorter, bank balance smaller, home happier, clothes dirty, the past forgotten, and the future worth living for."


Well, my pregnancy is coming to an end. I have about 7 weeks left. We have chosen the name Nathan. This pregnancy hasn't been easy. Between living with narcolepsy, non medicated, and schooling. I'm excited for his arrival. We are going to have the baby shower soon. Currently, I'm going to the doctors twice a week for non-stress tests because I have gestational diabetes. Gestational Diabetes is very hard to understand. I am trying to understand it still. here's my baby boy!



Monday, September 15, 2014

MIA again.

It's been really crazy around here. I've been slammed with school, house hunting (crossing fingers, I think we found one), and tests tests tests. I've been seeing doctors left and right. Well, one doctor had screened me for a test that recently another doctor thinks I may have. That doctor had sent a note to the previous one asking her to revisit the possibility of me having this Osteogenesis Imperfecta (I'm still doing my research on that). GUESS WHAT:

Tricare doesn't cover the blood work for the test...... so guess who will be calling to find out what is going on tomorrow. That's right, me.

Oh let's not forget I have an appointment Wednesday to check on the baby! ***Crossing fingers*** Maybe, we can find out the sex at this appointment.

Friday, August 22, 2014

No Medicine More Headaches

Good Morning!

Back in 2012 I suffered severe headaches that doctors didn't know what caused them. I went to hospitals, neurologists and more. Finally one doctor decided to send me to a Sleep neurologist to see if I had sleep apnea. These headaches knocked me down. I couldn't do anything. I wanted quiet and to just be left alone while I laid there. Nine times out of ten I would go to sleep. During that time my husband was very concerned everything went to hell. Laundry wasn't done, if it was it was left in the dryer. Dinner wasn't made by me anymore, which it usually always was. The house, don't even get me started.  The sleep neurologist found I have narcolepsy and every since the treatment my headaches went away. WELL.......

They are back! Living with narcolepsy isn't easy. It's been about 3 weeks since I've been completely weaned off ALL my medications and my headaches are quickly taking over AGAIN! I'm trying to take it a day at a time but when even a nap doesn't help, it's hard. I saw my sleep neurologist yesterday, and he told me exactly what I didn't want to hear. During this pregnancy there isn't any medications I can take to regulate my narcolepsy. He mentioned how majority of the medications can cause spina bifida.  I can't be the reason my child will suffer from a diagnosis the rest of their life. (YES, there is a possibility the child will have narcolepsy BUT that is manageable where they can live a normal life.)

So here goes to the remainder of the pregnancy with no medications! Wish me luck!


Supporting a Friend With Narcolepsy

Friday, August 8, 2014

Since June 2014

Good Afternoon!!
Sorry it's been awhile since I have posted. Here is an update.
After prozac I was put on a 2 prescriptions afterwards and finally found the right one. It helped me a lot. Took the cataplexy symptoms. Well, now my life is about to change again. July 3rd, I found out I was pregnant. July was a hard month; I was weaning off all my medications. I noticed my cataplexy symptoms coming back. July 30th I had finally weaned off all medications. It's getting harder to drive. I'm more tired than usual. There is times I have to pull over because I feel a sleep episode coming on. Currently, I'm 9 weeks and 6 days! We shall see how the remainder of the pregnancy goes!

Tuesday, June 3, 2014

Little to No Time

Dear Readers,

I've been extremely busy. I received my first case, I wish I could tell you about it but that would be violating the Confidentiality of the child. I have been off of prozac for about 3 weeks. I'm now on another medication to control the cataplexy. It has help my symptoms, I know definitely understand the difference between cataplexy and dizzy spells. I have managed to sleep maybe 3 out of 12 days without waking up once. Since the dosage was changed, it's new change for my body and keeping me awake. The couple I work for now are amazing! The little boy is the sweetest one I've meet. He is 8 years old. Oh let's not forget my husband has been put in the system for re-enlistment stuff. He will start looking in November, stay tuned! This month I have a lot of things going on; stay tuned for another update of my crazy life.

Wednesday, May 7, 2014

Adjusting

Well, it's been a few days shy of a week since I started this new medicine. Yesterday I woke up with a extremely bad headache and I was tired all day. Since starting this medicine, I have been extremely nauseated and anxious. These all are common side effects. Yesterday was hard for me, I fought sleep all day then night came and I couldn't go to sleep.
These drugs were not a cure for my narcolepsy, nor did they "normalize" me by any means. However they did help me to achieve a much higher quality of life. Without these, treatments, my life would have been entirely under the control of cataplexy and pervasive sleepiness. - Julie Flygare.

I started and finished reading a book (this week) called "Wide Awake and Dreaming: A Memoir Of Narcolepsy" I strongly suggest everyone reads it. Many people only know of Narcolepsy by the stereotypes from tv and movies. It's far from that. In Julie Flygare's memoir, she writes how her life completely changed after it. I absolutely love this my life did change after being diagnosed, and not many people know about it. I am working to change that. Help me spread the awareness of Narcolepsy.

Friday, May 2, 2014

It's Showing Itself

In the beginning of 2012 I suffered with severe headaches. I went from doctor to doctor and no one knew what was wrong. But I had one doctor who decided to see if it was sleep apnea. Shortly after I was referred. I was given a sleep study and day study. Where it was found I  have narcolepsy. First being diagnosed was a shock. I was in denial. This diagnosis doesn't have a cure. It can only be treated. I couldn't believe how one little thing can ruin my dream. But I learned to deal with it.
Since then, I've had issues where I have had to explain it's not like the movies. It's not because I'm lazy. A lot of people diagnosed with this don't like telling many people. I want to tell people, I want to educate them. I am able to drive because I have medication that helps me stay awake. I try not to let this disorder effect my life. There are times I have no choice but to stop everything and take a 15 minute "nap".

This year will mark two years I was diagnosed with it. And since then I have graduated with a bachelors in applied science concentrated in criminal justice administration(which now is a little hard to use). I will be sworn in to a volunteer position with CASA (court appointed special advocate). I also have started another bachelors degree in early childhood development.  I have done well with managing the narcolepsy.

Well, May 1, 2014 my diagnosis of narcolepsy without cataplexy was changed. Two years after being diagnosised, it was changed to narcolepsy with cataplexy. Which from my understanding is common. I'm not concerned. I'm actually am relieved. I explained how I thought they were dizzy spells. I've had them my whole life and noone could tell me why! Well he explained to was cataplexy episodes, the narcolepsy is being to progress. Now a question from my childhood has been answered. So follow me on this journey as I find the appropriate medication to control the cataplexy. & maybe more answers to my childhood questions :).