Kristen’s Fight Like a Girl (Rheumatoid Arthritis, Endometriosis, Narcolepsy)

May
10
2013

Kristen's Story (RA)I am 28 years old, and to the world, I look perfectly healthy. Except for some very scary scars, you would never know how much my body has endured. At 16, I was diagnosed with juvenile rheumatoid arthritis, after the doctors first told me I had lupus. Not long after, I was being admitted to the out-patient cancer center every few weeks for low dose chemo treatments to slow the progression of my disease. I was also taking more pills than I had ever seen in my life. Instead of going to class every day, the local school board sent a teacher to my home 3 times a week. By 18, I was receiving steroid injections in my back for pain control.

During my college and graduate school years, my tonsils and adenoids were removed, I had more MRIs and CT scans than I could possibly count, and saw more doctors than the phone book ever dreamed of knowing. It was briefly thought that I may have stomach cancer, and for 2 weeks, I lived in pure fear. A month later I was diagnosed with endometriosis. I never had what you might consider a “normal” period, but then nothing about my health has ever been what you might consider “normal”. This diagnosis started one of the lowest times of my life, but I knew what to do. I asked for help. I was on hormone treatment; I was in medically induced menopause. After 6 months, I was brought out of it, and I got better. About a year later, I was diagnosed with narcolepsy. I was suffering from what I would soon learn was called severe sleep paralysis, night hallucinations, night terrors, and cataplexy.

At 27, the decision was made that everything medically possible had been done to help my endometriosis, and the only thing left was a hysterectomy. That is the single hardest decision I have ever made. As a single woman with no children I was faced with a choice. Either way, the result was the same, pain. There was no way around the pain, and both would be long term. I chose the hysterectomy, deciding that ultimately I did not wish to pass my genes on to another generation. And though I do not regret this decision, I have battled with it each and every day since that fateful day.

So, as a woman with rheumatoid arthritis, narcolepsy with cataplexy, and resolved endometriosis, I know what it feels like to want to give up. I know how hard it can be to just get up every day. I know how hard it is to look at the puzzles pieces of your life and think there are too many missing to put it back together AGAIN. But I also know that for some reason I was chosen for this journey, for some reason I alone was picked to walk this path, and that gives me courage. There must be something in me that can do this, and that is why this girl fights!

Kristen T
Alabama
Submitted 5-26-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Bookmark and Share

Comments

  1. Amanda and Kristen, I’m so glad to of found this site. Thank you for sharing!

  2. Kristen, my name is Kristin.

    Your story is making me tear up at the moment. I’m going in on Monday to test for endometriosis after recently being diagnosed with narcolepsy with cataplexy. I’ve been going to doctors since I was 14 to get an answer to my fainting and sleeping probs and all seemed stumped until now. Although I am now having regular periods on a monthly basis for the first time ever (18yrs of periods), the fainting narc spells are gone, but the cramping is still unbearable. I also get these types of cramps a few times a year when not menstrating to the point of considering going to the ER.

    The women on my moms side of the family all have fainting issues, but in different ways. I’ve urged all of them to see if they are narcoleptic for the sake of their health but for offspring to know what to expect in the future.

    I’m the odd one in the family that I have never (up until the past 3 cycles) have had regular periods. They could be 6 wks to 4 months apart and last about 5 days. The pill does nothing but make cramps worse, cause fainting spells with dream hallucinations, and downside… I get 12 periods a year and paying money for it.

    I have a Dr right now that I have asked of him to be blunt with me if there is a possibility I can’t have kids. I just want to know what to do to be a healthy me and what is the true cause of these horrible cramps I get. I would really like to talk with you more with questions I have. I’ve never been to this site, please let me know how you are doing now.

    -Kristin

  3. “When life knocks you down, stand back up and say, You hit like a bitch.” You are inspirational, and I am here to say that I also have Narcolepsy and Endo. I am currently going through tests for RA and still waiting for results!! Keep your head up doll, You are truly strong and show more fighting power than most :)

Speak Your Mind

*