Medical Information

Author's note, general information, and links on Lupus, Sjogren’s, Pulmonary Arterial Hypertension, & Dyslexia.

Being chronically sick can be isolating. When I was first diagnosed, mostly between 2008-2009, it felt like I might never find love again. That's hard for a 20-year-old—or anyone! Romances—and the promise of the genre, Happily Ever After—got me through this period, and many other hard ones. Although, for me, the HEA seemed unlikely.

I wrote first the Vampire Inside Me, then Butterflies & Characters, on the 10 year anniversary of my hospitalization and diagnosis with SLE and PAH. It was cathartic and I felt it presented a much-needed voice in Romancelandia.

The Vampire Inside Me has a back story almost identical to my medical memory. The fiction and romance ended up high heat. Characters are bossy and yes sick people have S-E-X too! I listened to their voices. However, I remembered my years of teaching. I remembered seeing my chronically ill students' faces when I told them I had lupus. There is strength in knowing you are not alone. There is strength in seeing someone like you in literature and cinema. I couldn't forget them. Butterflies & Characters is a sweet, teenage or middle school appropriate, wishful romantic fiction. While I gave Ray experiences I had, I wish I'd been diagnosed when I had arthritis at 14. Her story is not mine, but I hope it is still enjoyable and relatable to audiences of all ages.

Please remember the presentation of the disease, symptoms, and long-term prognosis in autoimmune diseases can vary greatly. My story will very likely be different than yours, even with the same disease. But you are lovable. You may not be curable, but I hope you can find your equilibrium, as I have. Luckily, medicine, treatments, and long-term prospects are always improving.


I am Dyslexic.

I was told many, many times I was a bad writer, that I couldn’t write. I went to a special school to learn to read. I made it through high school with mainly A’s. I graduated college early cum laude before earning two Master’s degrees. It was a lot of work. Writing these books took a tremendous amount of editing, editing with editors, reading grammar books, and using read-a-loud editing functions. Believe in yourself. It was hard. It is hard. But I felt I had stories to tell—that I still have stories to tell. I will continue to work hard and appreciate the amazing work of the friends and editors that have helped make this possible. You don’t know what you are capable of doing until you try, and try again.


More Information


LUPUS

Systemic lupus erythematosus —SLE

Lupus is a chronic, incurable, and noncontagious autoimmune disease. Autoimmune means your body attacks itself. While anybody can get lupus, it is most likely to be seen and active in women of childbearing years (14-40). When I was diagnosed, which I think still stands, the average person waited seven years and saw many doctors before someone diagnosed them. During this time you can often feel like you are “losing your mind” and quite unwell. While this is being taught more in medical school, and the Lupus Foundation of America has done an excellent job, more awareness and funding are still needed. Below are just a few lupie resources.



Sjogren’s

Sjogren’s, like lupus, is an autoimmune disease. It is commonly seen in addition to SLE. It primarily affects gland production and can cause discomfort and complications through the extreme dryness it causes. If you’d like more information here are some good places to start.


PAH

Pulmonary Arterial Hypertension

There are five types of pulmonary hypertension. PAH or primary pulmonary hypertension or Group One is a rare type of pulmonary hypertension. All groups have high blood pressure in the lungs, which increases strain on the right heart. This can cause severe fatigue and many other, sometimes life threatening, complications. The treatment, medications, and prognosis is different depending on the type. The Vampire Inside Me, and well as my own type, is 1.4.1. The PHAssociation and National Organization of Rare Disorders (NORD) have many excellent resources, if you’d like more information you can start with the links below, including their catchy images.