Hello friends! My name is Jackie and I have ME. I was recently selected to participate in the Cortene or CT38 trial at the Bateman Horne Center in Salt Lake City, Utah. This drug is expected to be curative. I wanted to blog my experience for those who are interested in a behind the scenes look at the trial. In this post I want to give an overview of my story and my symptoms so you can compare how Cortene might help you (or not help you) if your case is similar to mine. I realize everyone is different and if our stories don’t line up I hope you find someone with a story similar to yours to follow. I plan on posting my study progress weekly, and maybe posting other stuff, if I have the energy.
A BRIEF SYNOPSIS OF MY STORY
I was officially diagnosed in 2017 by Dr. Nathan Holladay in Salt Lake City, Utah but have been suffering with this heinous disease for a very very long time. I have been sick since I was 20 (2005) becoming progressively worse until today (2018). I am coming up on 13 years with this illness and will turn 33 in October 2018. I received bad treatments and incorrect diagnosis until I had a steep decline in 2016 and 2017 after a crazy stressful period of major surgery, buying a house, getting married, and having a viral infection. I have a cynical view of conventional medicine since it has done me more harm than good at this point (see my full story here), but am trying to keep an open mind because of the drug study. I mean, a cure sounds pretty amazing. The picture of me here is pretty much all I did that day. Get ready and take a photo. haha.
Even though at this point I am very debilitated and unable to work I am still considered a mild to moderate case because I can sit up for several hours a day, and even leave the house sometimes. My main symptom is post exertional malaise which comes after about 7 minutes of continuous physical activity. My body shuts off and I feel near dead for hours at least, sometimes days depending on how far I have pushed myself beyond my limits. I become severely uncomfortable sensitive to light, sound, and touch. The slightest noise or touch is like someone clashing cymbals next to my head. My brain can’t process or compute anything when I am in this state and I can’t hold much of any kind of conversation. My limbs get tingly and I feel heavy. I can tell when my crash is starting to subside because I get a migraine and super intense neck pain.Thank goodness for Excedrin Migraine!
I also get random episodes where I feel like I have a fever with all the symptoms of one including a cold clammy feeling, lower back aches, and a general feeling of heaviness. It’s like I am neck deep in mud when trying to do anything at all. These types of episodes seemed to have lessened with the use of antivirals, which I highly recommend if you had viral onset, or episodes like mine. I have trouble sleeping and have to take every precaution that my precious sleep is not jeopardized. Sleeping time is healing time and if I don’t get enough of it, it’s an automatic all day long crash.
I never thought I had POTS, but it seems like I probably do. I have orthostatic intolerance and autonomic dystopia. I am ALWAYS thirsty no matter how much or what I drink. I stay alive on electrolytes. Traveling is really hard for me. If I do have pots, it’s not nearly as bad as some of my friends. Know my thoughts are with you if your POTS is severe!! I also have traces of Fibro, but not full blown. I’m so sorry if you have it. I’m willing to bet there is another blogger out there doing the cortene trial who has fibromyalgia, it might be worth seeking them out rather than me.
I often push myself beyond my limits because I would rather live my life than spend all of my time at home walking on eggshells not having a life at all. Maybe this will be to my detriment, but I don’t care. Luckily, I have found a few helpful supplements and providers to help recover from crashes, I’ll probably share those in another post.
TO MY SERIOUSLY ILL FRIENDS:
I want you to know my heart is with you. I can only imagine your struggle. I am praying this drug works, especially for you.
UNDERNEATH THE ILLNESS:
I hate this illness because it dwarfs who I really am. My illness is not me. I am a happy, energetic, jokester who loves making others laugh. I like to keep people on their toes, never knowing what to expect from me next. I am fiercely loyal and protective to my family and friends. I am half Puerto Rican and went on a church service mission to Indonesia as a young person. I love art and you will often find me at the computer fixing and colorizing old damaged black and white photos. I graduated Brigham Young University in Provo in 2012 with a degree in Public Health Education. While I was still able to handle employment I worked in Teen Pregnancy and Tobacco Prevention programs at the local health department. I loved my job and was very passionate about making social change. Actually, the reason this blog is called birdbeeme.com is because it was originally made to be a blog on sexual issues! I still might work on that, but ME to be more pertinent at the moment. I also was a certified personal trainer and weight loss specialist with the National Academy of Sports Medicine. I loved working out, hiking, the outdoors, anything active. I dearly miss being active. I have been married for two years to my handsome and thankfully very understanding man. I managed to snag him before I got really bad, poor guy. Didn’t know what he was getting into- haha.
Anyway, I hope we can be friends. I would love to hear your story and experiences.
Tell me below what bad diagnosis and treatment you have received as a result of this illness? We can commiserate together. 🙂
Talk to you soon,