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Yvonne’s Fight Like A Girl Story (Mixed Connective Tissue Disease)

Mixed Connective Tissue Disease 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!

Yvonne
Indiana
Submitted 5-7-2012

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.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

5 comments

  1. Hello yvonne: so sorry to hear you have joined ‘our’ little umbrella group of mctd. I have had mctd for about 26 years: for 10 of them i was undiagnosed: they just treated me for an underactive thyroid and kept telling me i ‘shoulnt’ be tired. I havent been able to work ‘outside’ for years but that hasnt stopped me achieving things. One of the worst things is losing your “identity”.

    I understand!
    love from Darwin Australia.

  2. Yvonne~I know EXACTLY how you feel! I am 55 yrs. old and about the time I turned 31 I was working full time and just feeling tired and sick all the time….I had three growing sons then and a husband in the military….I was extremely tired all the time; felt like I had the flu with nausea, etc….
    The first time I went to the dr. they told me I was just depressed! I had passed out at work from just being sick; and was taken to the emergency room and this is what I heard from the drs…! WHAT???
    Well, after a few visits with my regular dr. he sent me to a rheumatologist and I was diagnosed with fibromyalgia. Well, at least it was something! Then a few tests later they told me I showed signs of Lupus (SLE) and more tests for possible Sjogrens Syndrome…..well, after a few yrs of maybe it’s this and maybe it’s that; I was definatively diagnosed with Lupus and mixed connective tissue disease to include Sjogrens’ and Reynauds….(this diagnosis took from about 1991 till 1999 and many, many, many blood test and etc…)!
    I am so much luckier than some with this diagnosis but I do take Methotrexate and Plaquenil on a long term basis and only take Prednisone when absolutely necessary as I do NOT like the weight gain it causes on me…but sometimes, I have no other recourse and it is like a life saver when I have a really bad flare!
    I am now a grandmother and enjoy being a stay-at-home grandma to my granddaughter…I take each day as it comes and I FIGHT LIKE A GIRL everyday!
    Good Luck always
    Sheliah

  3. I know how you feel, you are not alone. When I was 11-13 I had MCTD and I’m still recovering. I know what it feels like to have the X-Rays, MRI’s, Ultrasounds, IV’s, and other tests. But, remember that it is lucky that we got the treatment and are on he mend.

  4. I also had it come on suddenly and out of nowhere! It was so difficult to one day be Wonder Woman, and a week later to be in so much pain death would have been a relief. I’ve never spoke to anyone else that had it slam them so suddenly. Your in my thoughts!

    Mel from North Carolina

  5. I’m so glad I read this. I feel so alone right now. I can really relate with the whole “pulling away” from everyone thing. I have such limited energy I feel like I have to be really careful about how I spend it. Mine didn’t come on so quickly, although I feel it getting worse quickly. I just felt like I had the flu for months and after complaining about it for long enough my NP finally did an ANA cascade. After reading about the symptoms it all started to make sense and I felt relief that was wasn’t CRAZY!!!!! All the little things added up. Why does my shoulder hurt today and my back the next day? Why did I have to spend the day in bed? Why am I so allergic to everything? Why do I feel so sick? Random excruciating wrist pain? And on and on. I didn’t connect the dots. I didn’t think anything when I started using lidocaine patches on my knees to get through a shift at work. Getting a diagnosis at least made me feel like all this stuff wasn’t just in my head.

    I have hope that someday I’ll find something that works……
    I also have hope that someday I’ll want to be social again.

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