My name is Yvonne. I am a 39-year-old mother of three beautiful children ages 21, 17, and 14. I can’t tell you how excited and sad I felt after finding this website. At first I thought I would just read some of the stories about mixed connective tissue disease just to see how others are dealing with this. I have never blogged my own personal tragedy to others, but I also have never felt like I do now. So here it goes…
I have had to deal with this for 2 long years. I too was athletic, worked 12 hour shifts as a nurse, and loved doing things. One weekend in February 2010 my life was changing and at a rapid speed. It was my weekend to work. Normally it takes me about 5 minutes to park and walk to my floor – not this morning. It took me 25 minutes to walk to my floor. When I got to the floor all the nurses looked at me and told me how horrible I looked.
Horrible! I was so short of breath, every possible joint in my body hurt, my ankles and legs looked like one (because of the swelling), and I felt this crushing pain in my chest. Wow, I am a nurse, really?! It was so hard to see just how bad it was because the night before none of this existed. I began to become scared, and for the first time in 38 years I thought that there was a really good chance I was going to die.
My first visit with my general practitioner was frustrating. Regular doctors are baffled when you tell them that you have so many vague symptoms, but it’s not baffling to the person having them. I could see that look in his eyes of not knowing what to do. At the same time this is going on, I was scheduled for back surgery in November of 2010. My doctor knew what that was and how treat it. The bad thing about already having existing pain is if something else is causing pain, well, you are already in pain and now have to try and differentiate between the two types of pain. My new symptoms just get grouped with the others. UGH!
So 2 years of dealing with this and I pulled away from everyone, including myself. Normal people cannot understand just how tired you are or how you really don’t feel like going out. I got a referral to see a rheumatologist. I was so scared because I know that if they diagnose you with something, it is your baby for the rest of your life. My life was becoming only a glimmer of what once was mine. This specialist was my angel. Many tubes of blood, many X-rays and MRIs, more blood, and then he calls me at home.
This phone call came after about 2 visits. We had talked a lot about the possibilities of what it was and what we could do to treat it. I thought, really? Am I going to be able to get my life back? Then I thought ‘You came to him, so trust him’. That phone call was this caring doctor who asked me if I had a minute to go over my test results. He finally said to me what I wanted yet didn’t want to know; I have mixed connective tissue disease.
Now we know! I didn’t think I would have felt relief after hearing that, but I did. I called my girlfriend and she told me that she could hear the sound of relief in my voice, then she proceeded to ask me what the doctor had to say. I started on prednisone and plauqenil about 1 1/2 weeks ago. I am alive again. With each passing day I feel a little more of me coming back. Thank all of you for sharing some of your most painful stories. It has inspired me to face this head on and fight like a girl!
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.