My name is Juakina and I am 32 years old. I was diagnosed with Mixed Connective Tissue Disease when I was 12 years old. I had my ups and downs battling a disease as a child is sooo different than fighting my disease as an adult. I’m originally from California and in 2008 I was informed that my lungs were attacked and functioning at only 66%. I have 21/2 years of Cytoxan treatment. But I must say at 28 that was scary. I am a mother now, and my daughter was the first thing I thought about, what if this kills me. I sulked for a few weeks before the Holy Spirit put a stop to my nonsense. I starting living with purpose and refusing to be defeated by this disease. In 2011 I moved to Texas so I had to scope out a new team of Doctors. Doctors always start with baseline information, so my new Rheumatologist did a brand new work up on me. The devil got me again, she came back with news that I had overlapping diseases, Mixed Connective Tissue Disease and Lupus 🙁 because I needed a new battle to fight. It’s 2013 and I’ve had knowledge of this for a year or so but it seems to get tougher. My daughter is 12 but I’m still single and want more children. I’m in the midst of a flare up now with my GI tract and no diagnosis has been made or even found. To be honest my spirit is down today. The idea of being a wife and having more babies seems to be getting further and further away. I’m wondering will I ever be healthy enough to reproduce, will any man love me enough to take on the responsibility of a sick mate. I have some praying to do,, LADIES we can be healed Jesus loves us and he will send other people to love us too. We’ve all heard it, ATTITUDE IS HALF THE BATTLE. So lets put on our boxing gloves and fight this thing, better yet let’s knock it out….GOD BLESS YOU ALL! 🙂
Juakina
Texas
Submitted 4-22-13
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 article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Hi Juakina,
I live in texas too. I wonder if we are close by? Email me
Ruslfis@yahoo
Hi my name is Carla,
I was diagnosed in may of 2012. I have had all those fleeting complaints for years that doctors ignore. My rnp finally put rhem on the right track when My gynecologist ran some test and they came back with an rnp triple the normal level.
So now we just add this to a long list of ailments that plague me, essential tremor disease, manic depressive disease, fibromyalgia, restless legs, chronic Migraine, cluster headaches now this. They say God wont give us more than we can endure, He must think Im really strong. I am hoping to find some support from this site. I am a 48 year old wife and mother of 2 sons 25 and 27. I am raising my almost 4 year old grand daughter. My oldest son her dad was injured in Iraq and cant raise her. Her mom took off. Between all this and having up to 4-5 migraines a week I just have no energy. Anyone have any ideas? My husband travels for work and is t home much. I found a mothers day out program that provides me 5 hours of free time twice a week. That helps some. I am open to suggestions.
Have your doctors screen you for Ehlers-Danlos Syndrome. I was having migraines the same as you were and major GI problems. Several other issues and was beginning to feel like a hypochondriac. I was gardening one day and the next day I could barely walk and was in excruciating pain in my knees and ankles. My neuro doc is the one who diagnosed me. I have the type with hypermobility because I am double jointed. There are several classifications. It is rare and a lot of doctors have not heard of it. I am now on disability because I can’t walk more than 10 – 15 minutes without a lot of pain – plus I still have the migraines and everything else but I know now why. It even explains things from when I was growing up because it is a genetic disorder.
I too have MCTD and live in Texas. Please feel free to email me@ mrsmofive@aim.com
Laura
I recently just got diagnosed at the age of 20, and went looking for stories like yours. I’m really struggling emotionally with how to take it and perservere- finding it hard to see God’s plan in this. If it’s okay can I ask how you’ve seen God through all of this??