I had always been a very healthy, then very ill, then healthy, then very ill child. I played almost semi pro soccer until I as 18 until I went away to school. I had bad problems there. I was diagnosed with bipolar disorder and was put on medication after medication, even after having an acute seizure several times and a bevy of other strange non bipolar related neurological symptoms.
Flash forward to 28. I became very ill in 2008. To make a very long story short, I went to the hospital after being told by several doctors that I was too young to have the issues I was reporting. I as told it was all anxiety from my bipolar disorder. When I went to the hospital I found a doctor to listen to me. They checked me out and found my heart was being crushed by almost a liter of water. I had severe anemia and pneumonia. I ran a 106 to 107 fever for a week. I blacked out and woke up covered in ice and with ice under my arm pits and legs.
During that month I was in an out of the ICU and intensive care all over Indiana, I went to seven different hospitals in Northwest Indiana to try and reduce my fever. Finally they managed to bring my fever from 106 to normal long enough to kick me out (I had no health insurance). Three days later I started running a super high fever again and broke out in a rash all over my face and my back. My mother took me to the teaching hospital in Indy, where they told me their best guess was Mixed Connective Tissue Disease.
Flash forward a few years. I had reoccurring pericardium effusions, inflammation of the chest wall, more effusion of the lungs, inflammation of joints, cyclic vomiting for weeks on end, and chronic menstrual issues that cause me to bleed so much they put me on special medication to slow the blood so I didn’t pass out. My seizures started again in 2010, but this time they were in the frontal lobe. I lost the ability to read, write, I didn’t know where I was, and didn’t know how to drive. I lost my vision completely while driving once. The doctor and I now agree that the old diagnosis of bipolar were really symptoms brought on by the inflammation of the nervous system and brain. I could go on and on but the point being, it has been a very exhausting and lonely journey. Almost dying, no one believing you regardless of the obvious illness your manifesting, and the endless debt…you all know the story…
But, I am pretty happy regardless of it all. I struggle every day to do normal things, but I am finding my way. I have a job that allows me to work from home sometimes, so that helps. I worry I will loose it during a flare up of course, but I keep pushing on and fighting the good fight. I have never met anyone else with MCTD besides myself, so it is encouraging to see other women out there whom may share my experiences. Though things have been hard I know I will not give up. I’m a phoenix and so are you!!! Through my endless creating of artsy things, the support of friends and family, and hopefully getting back on some kind of insurance (I’m in a flare now with no insurance)m I hope to regain my foothold and keep it =D
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.
This story 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.
Hello Jennifer & Everyone,
From the depths of my heart I thank You for sharing Your story with I & We All. You have changed my life and I thank You. I do not battle an illness myself, and to learn of Your combat against an illness is moving and touches my heart in sincerest of forms. Within the depths of my heart I feel great love and wishful dreams for You to be a Healthiest of Ladies, I wish You all best and may God be with You.
I am so sorry you have had such a long and bumpy road. Thank you so much for sharing your story. I too have MCTD. I have had many other diagnoses and treatment for things that we now realize was the MCTD. 2013 wasn’t great, but I think 2014 will be better.
My thoughts and prayers are with you,
I first would like to say thanks for having the courage to share your story. I too have been diagnosed with Mixed Connective Tissue Disease. I usually don’t comment on anyone’s story but I do find comfort reading them. I was a little concerned when I first read your story. Your symptoms do not sound like MCTD. I have a friend that has had similar symptoms as you. In fact some of the very same things as you. She was diagnosed with Systemic Lupus. Please continue to research your condition. Your symptoms seem much more severe than MCTD. My intention is not to scare you. Lupus is a very manageable disease with the right medication. I am not a doctor. I am just a person who wishes for you to have the very best quality of life as possible.