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


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 :).

Wednesday, April 30, 2014

Narcolepsy: Not alone

In June of 2013 a woman named Julie Flygare started a campaign for Narcolepsy. March 2014, it passed 1000 photos. Please watch the video.

She's right, many people do say they haven't heard of Narcolepsy. I never heard of it until I was diagnosed with it. You may know more people than you think that have it. As she stated many people diagnosed with narcolepsy don't really tell people. I'm more open to share because I want people to learn. I don't want them to think it's like what they see on tv. It isn't.

Sleepiness is NOT laziness:
Imagine not sleeping for 2-3 days straight. That’s how a person with narcolepsy feels daily. This sleepiness is neurological and uncontrollable and is not a sign of laziness or lack of will power. 
I didn't go looking to be diagnosed. Why would I want to be diagnosed with something where there is NO CURE. I really fall asleep all the time without treatment.

 Neurological disorder without a cure:
Narcolepsy is believed to be an autoimmune neurological disorder caused by the gradual loss of neurons (called hypocretin or orexin) which help regulate waking, sleeping and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedules. No two cases of narcolepsy are exactly alike – what works for one patient may not work for another.  

From what I understand it is just a neurological disorder. They are currently studying to see if it can be an autoimmune disorder also. Just because I'm sleepy doesn't mean I show I am.

People with narcolepsy do NOT sleep all the time:  
Individuals with narcolepsy may fight sleepiness during the day but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy. 

 I have this problem. I fight sleepiness during the day but "disrupted nighttime sleep". It actually happened last night. I went to sleep but up within the hour or so. I couldn't go back to sleep for a while afterwards.  My daytime sleepiness is regulated by medication. With the medicine I can maintain my physical activities. Without the medication, work school and more would be affected.

I've joined the campaign; Will you? 

Julie Flygare has said it better than I could. When I was diagnosed I didn't know this was around, I'm glad I've found her and her website. I will continue to follow her and help educate myself and others.

To follow or read more:
Julie Flygare.

Monday, April 14, 2014


Good afternoon!

CASA training is almost done! I will be sworn in before I know. School is going by fast! On my third week. The fourth week starts Wednesday! I also found a new job, I hate to quiet my other but they have decided to place their children in the Child Development Center. One of them were placed already, the other one is on a waiting list. Sadly, I had to leave, I have to look at what is financially better for me and my family. Well, things are crazy in my life lately. I am trying to write as much as possible. Stay tuned for what may happen next in this crazy life!!


Thursday, March 27, 2014


Good evening!

A lot has happened. I have started CASA training!!!! Also classes started this week. I have had more blood work and an xray. One of my doctors have referred me to another doctor, hopefully they can tell me what is going on.

Well, I have two seminars today.  I also may be looking for a new job too. We shall see in a few weeks. Keep you posted on how things go.

How are all of you?

Wednesday, March 5, 2014

Back at it!

Bare with me this will be a jump around post.

Well, I have been able to write for a bit. I have been really busy. I finally have gotten everything in the works. My primary care told me not to worry because I'm a female so I'm suppose to be osteopenic (something like that). Mac is on a whole new schedule duty day(24 hours) then work day, which means he goes in around 6 one day and won't get off until after the next work day. Then he comes home and the next day works nights back to back. So this week he had duty Monday, came home after work Tuesday, nights tonight and tomorrow, then Friday off Saturday off, duty Sunday. Then this schedule just about repeats.

I have enrolled in school again. I will be going back for my second bachelors all online. I start on the 26th! This year we have a lot of stuff going on. So I will try to post frequently. no promises. It is crazy to see it's march!!

Mac starts looking at orders in November! What should I expect now......

Tuesday, February 25, 2014



I want to apologize for not being active. Around the end of January I was told my grandmother has stage four cancer. That same day told my Aunt's mother-in-law ( I have known since I was 3ish) was hospitalized. She pasted a few days later. That same day I was told my great grandmother passed. It was a lot to take in. So in my family we share the memories and celebrate the life. It's a party. Weird, I know.

On another note, I'm still fighting with doctors about my health. February 10, I had another Dexa Scan. A Dexa scan is a bone scan it basically will tell the density of my bones. Well, as of February I have now had three scans. & this one states I have osteopenia. Tomorrow I get to talk to my doctor about the results so I will see what the next step is for this. I have been actively going to the gym, I tried the daily calcium dietary supplements, a few other things. So now I will see what is next.

Stay tuned for next move.

Friday, January 24, 2014

Be Who You Want Your Kids to Be!

This post will strictly be for me to vent.

Let me begin with saying how people don't want their kids bullying or even being bullied. Now, where do you think they learn to become these bullies. I'm going to use a prime example I see happen just about everyday. FACEBOOK. We see more bullies there then in reality. Why? Because the fear of retaliation is gone, we can hide behind the keyboard. I will narrow it down a bit. On facebook I'm sure you have seen the military hatred posts (like in the picture below). Yes she said mean things doesn't mean we have to also. Maybe she just truly doesn't understand the military life. Being a military brat is completely different than being a military spouse. Or being a civilian child and then marry into the military now that will change your outlook completely... But today the post hit me hard:

Well the person who reposted this continued to call her a piece of shit. And that got me thinking:
I understand how angry that post may make you. It makes me angry as well. But did you ever stop to think it was another hoax. Or even if it isn't, she does have her right to freedom of speech. We don't have to agree with her But it doesn't mean we have to go around and blast her, calling her names and what not.  I mean for those of you who have kids, you don't want them being the bully, correct?  Now, I'm not saying you do this, I'm saying it happens. If you are going to sit here and disrespect someone for their opinion, don't get mad when you are the one disrespected. Or if your kid becomes the bully you don't want them to be.  Who do you think they learn it from. We can't expect them not to do something we do. 

What happened to the golden rule: "Do onto others as you wish others to do onto you."
Be a role model.

Monday, January 20, 2014

Computer issues!


I'm sorry I have been MIA. My computer needed to be repaired. It had so many viruses on it. But thankfully geek squad is great & got them all off.  So what have I been up too? Well, I was fighting a cold for a while. We visited family in jersey for New years. The dogs finally got to experience snow. That was a cute show haha. Now I have began to try making full means maybe not from scratch. but semi scratch! It's quite fun. I will continue to keep you posted. I also am still waiting to hear from my doctor about the John Hopkins things. 

I hope everyone's new year is starting off to a good start :)