Today you are filled with relief since you have known something is wrong for 20 years and but scared because today you have a name for it. You will send your referring Nurse Practitioner, Michelle, flowers and a nice handwritten letter, because after all the years she finally heard you and acted. If you had a dollar for all the thyroid tests administered over the last 20 years you could have send a sports car!
I know you are still reeling from the death of your husband and soul mate, 18 months ago, the new baby, and being a single mom yet again. Buckle up Buttercup because this ride is far from over! In two weeks, June 14, 2010, you will have a work related injury that will send you on a three year crash course of searing pain, Doctors, Lawyers, specialists, Work Comp, PT, Chronic Pain rehab, more injections and needle sticks than countable. MRIs, EMGs, traction, pain meds, muscle relaxers, brain fog to the max. You will be so wrapped up in this new physical hell that you will not be able to focus on your Narcolepsy. You will lose your livelihood, your friends, your sanity at times. You will dive into a pit of despair and be angry at yourself, your husband for dying, and your friends for abandoning you when you need them. Angry with Doctors and Specialists for not helping and not listening. Angry at your employer and those you trusted for not backing you up.
On your 37th birthday, a coincidental, and horrific, yet wonderful surprise. Your oldest son 17 1/2, and his girlfriend 15 1/2 find out they are pregnant! All the long chats and coaching on birth control, the effort you made at every turn to protect your kids from this fate. She has little support at home, her mom died when she was 7 month old. So now you are mom to another child and soon a Grandma as well. Make room for baby and an extra teenage in your little house. Bonus, you will see your Grandson Bentley take his first breath, and help your kids in countless ways to navigate parenthood.
In the mean time you struggle with meds to help with your Narcolepsy, your Dr. is mediocre at best but he’s all you have. You are too tired to drive and in way too much pain to tolerate long trips. You are trapped in a vicious cycle of pain meds and muscle relaxers that put you to sleep and stimulants to perk you up. You will refer to this as “Doing the Elvis Presley routine”. You know little about your N and C. Not even realizing you have C. Your beloved Adderall will be taken away after a few trips to the ER and the Holter heart monitor say NO MORE! This is the crash of Dec 2011.
Fast forward to March 2013, WORK COMP settlement is finished, no more lawyers! You cannot find a job anywhere, and SS denies you every time. You will need a break from the job search of the past 2 years and spend some much needed time finding yourself. You will feel like a compass that is spinning out of control. You have no idea what comes next, a widow for 5 years now, grandma for 1 ½, unable to work and you’re not even 40 yet for God’s sake!
Out of boredom in August 2013 you’re going to search Narcolepsy on Facebook and hit join on the first group you see. It happens to be a really lucky click as these people will become great friends, endless resources and provide boundless support. In September, this woman named Julie Flygare is going to offer this e-book of hers for free. Now you’ve never read an e-book but since you just got that new iPad you think it sounds like a great idea. Huh, a true story about N by someone who has it, great idea! You will finish it in record time and learn to use the highlight function on the iPad rather quickly too. Sitting on your Mom’s sofa with your mouth hanging open, Brother Rob will ask if you’re okay. To which you will reply “Holy Shit! This explains so much about my life!” This will ignite a firestorm of seeking answers about everything. Yeah, that Cataplexy you didn’t have, surprise! You do, not always the fall down kind but if you really look back, it’s all so clear. The text book definitions are not the best picture, your new friends are. You will find the courage to try new things and discover new paths. You will quit smoking and delight your family. Quitting smoking was something you didn’t think you could do. This will give you the “I can” spirit back and you will do great things again!
Search for the new you and embrace life again!
Love Always, ME