Search This Blog

Thursday, November 28, 2013

So Thankful

Happy Thanksgiving 2013!

There is so much that I am grateful for, I will name just a few...
- my God
- my family
- my friends
- my country USA!
- the ability to stay home and raise my kids, thanks honey!
- being a nurse
- my N+C, it gives me patience and understanding as well as bodily awareness
- my oils
- the beauty of the earth
- the miracle of life
Enjoy every moment and cherish every loved one.
Many blessings on this and every day- Hilary

*photos courtesy of www.crosscards.com



Monday, November 4, 2013

"Dear Hilary"

*This post is in response to Julie Flygare's Blogathon invitation titled "Dear Diagnosis"

Today you received your narcolepsy with cataplexy official diagnosis. It confirms what you already know. What you don't know is how you will treat it. You will excitedly fill the prescription for Provigil, and nervously take half of your first dose after researching the medication. Within the first ten minutes your head will feel like a tin drum with a slight ringing lasting approximately a half hour. The medicine appears to help during the first 5 days, then the sleep attacks begin to rear their ugly head again. After a couple weeks, your body begs you for a medicine holiday- meaning a day or two without meds (stimulants), so your body can rest. After another week or two, not only is the medicine no longer effective, it brings severe headaches and exhaustion. After discussing these concerns with your husband, you mutually agree that it is best not to continue with that particular drug. After even more research, you decide to go med free. It will be a lifestyle adjustment both for you and your family, but it will also be a great learning experience for all of you. You will also experience harsh criticism from fellow PWNs who simply don't believe you can live with N+C without taking prescription meds.

Today your husband is relieved that you are not miserable being married to him, and that your excessive napping is not an escape from him. Your sleepiness has taken its toll not only on you, but the ones you love most have taken it personally.

Today you and your family are grateful that it is not cancer or other terminal illness.

Today you thank God and ask how you can serve Him in this and help others.

Today the "lazy" label gets thrown out the window!

Today you reveal to your family members the confirmed diagnosis, and receive support and genuine interest in this disorder.

Today you will resign from your graveyard job as a NICU nurse with a heavy heart. With no FMLA to figure out if meds will help and no cure available, you see yourself as a hazard to the beautiful babies you work so hard to protect. It will take about 4 months before you are no longer a walking zombie as the EDS eases up slightly. Your kids are happy that you are home, and this was truly a blessing in disguise, but you will still long to bathe a newborn, attend high risk deliveries and hand a new mom her baby for the very first time.

A few months from now you will experience your first full body cataplexy attack, it is horribly frustrating but don't be scared. Your cataplexy will no longer be classified as mild, as time goes on your husband and other family members will witness your attacks (usually from laughing). Your mom doesn't handle it well, she finds it disturbing even though you insist you're fine and it doesn't hurt. I think it's just hard to see your child go through that. You will learn your triggers and can sometimes stop the attack from escalating, and sometimes warn others of an impending attack and ask for help. You contemplate designing your own medic alert bracelets for fear of ever experiencing status cataplecticus ;)

Within a year of diagnosis you will see signs of cataplexy in your teenaged firstborn daughter. Her fatigue and brain fog appear to be more than just teenager tiredness. She will express symptoms that you yourself know all too well. You will both struggle with the fact that she more than likely also has N+C in its early stages and are torn by seeking a diagnosis or not.

You will eventually find and read, Wide Awake and Dreaming by Julie Flygare and find it a great source of information and inspiration. Note to self: Don't even think about running a marathon ;)

All in all, having the diagnosis is the first step in understanding what is going on with your life and it will provide answers to some past health/physical mysteries. You will see the need for education regarding this highly misrepresented disorder, and see to it that everyone you speak to about N+C knows the reality and life changing truths about it!
You will have some physical limitations (not many, but some), and that's okay. Don't ever use narcolepsy as an excuse or crutch for not doing something that you truly are able to do.

Lastly, no matter how bad the cataplexy gets, NEVER STOP LAUGHING!