Guest post by Terrie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here.
You are about to go on a journey that will take you to many lows along the way. Your doctor will soon confirm that you have Narcolepsy. You will experience all the symptoms of narcolepsy to some degree. The quick diagnosis from the doctor and the urgency to get a sleep study test done will get you on the right path to feeling “normal” within a few months.
You will still have struggles as you go through the different medications to see what will work for you. You will have to learn what triggers your emotions and how to lessen your stress. You will feel alone many times and question God, why this had to happen. Just remember, you have a great family.
After a few years, you will be doing much better. Your medicine will work so well that most people won’t even remember that you have narcolepsy. Others won’t ever know unless you tell them. You will have to take a combination of medications to keep you stay awake and medicine to make you sleep. This is a “normal” life for you.
You will be about 6 years into your journey when you start questioning if your 14 year old might be narcoleptic. Being a typical teenager in middle school is tough enough. Signs in the beginning were thought to be depression. Sleeping everyday after school right up to time for supper, became the normal routine. You will not learn about her sleeping in school from any of her teachers because she continues to bring home good grades.
Katie will finally confess to you about sleeping in most of her classes when it finally becomes a problem for her. Soon after her sleep study is done, you will learn that she is narcoleptic too. She will experience all of the symptoms you have, only hers will be much worse. You will cry many times as you watch her struggle through high school. She will have good days and many bad days. She will continue to get worse, having many cataplexy attacks at school and very vivid hypnagogic hallucinations.
Her 1st real cataplexy attack will last 5 hours and land her in the hospital for a weekend. This is called status cataplecticus. She will have a few of these attacks but not as severe as the first one. She will go on to make a video to help educate others that might have gone through the same thing or for those seeking answers.
Although narcolepsy is life challenging, Katie will continue on and will graduate with great grades. You will stop questioning God as to why you have this. You will now see that you are fortunate to be part of her narcoleptic journey. She will struggle most everyday but will always know that she, as well as others are not alone.
Read Katie’s letter (Terrie’s daughter)