Living with Mixed Connective Tissue Disease

Living with Mixed Connective Tissue Disease
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Some of you readers that really know me may know that I have Mixed Connective Tissue Disease (MCTD) or you may think I have Lupus or you may just know that I get sick and have struggles that not everyone has.

Most people don’t know very much about MCTD, even many doctors struggle with all that can be associated with this auto immune disease.  I wouldn’t wish this on anyone.  One of my biggest fears, obviously, is that my kids may someday inherit some of the problems that I face.  I pray that I can have it all.  I’d much rather be the train wreck that copes with this then see my children have any resemblance of these health problems.

So what is MCTD?

Definition

By Mayo Clinic staff

Mixed connective tissue disease (MCTD) is an uncommon autoimmune disorder that causes overlapping features of primarily three connective tissue diseases — lupus (a long term auto immune disease that may affect the skin, joints, kidneys, brain, and other organs), scleroderma (Scleroderma is an autoimmune disease of the connective tissue featuring skin thickening, spontaneous scarring, blood vessel disease, varying degrees of inflammation, associated with an overactive immune system) and polymyositis (Polymyositis is a disease of muscle featuring inflammation of the muscle fibers) {yep I get to have a little bit of a lot of different diseases}.  Mixed connective tissue disease also may have features of rheumatoid arthritis.  For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease.

Indications of these diseases usually don’t appear all at once, which complicates the diagnosis of mixed connective tissue disease.  People with mixed connective tissue disease often are first diagnosed with lupus (this is what happened to me.  When I was 15 they thought it was juvenile rheumatoid arthritis, then as I got a bit older they changed the diagnosis to Lupus, but as things have progressed it’s changed to be MCTD).  As the disease progresses and other signs and symptoms become apparent, the diagnosis is updated (there are lots of blood tests I have done on a monthly to three month basis and even my most mild blood results don’t come near to being in the ‘normal’ range).

Mixed connective tissue disease occurs most often in women and is usually diagnosed in their 20s and 30s. Occasionally children are diagnosed with mixed connective tissue disease.

Some of my daily symptoms are:

  • Raynaud’s disease (see explanation below)
  • Fatigue (it’s more then wanting to hit the snooze button peeps…I’m ALWAYS tired)
  • General feeling of being unwell (malaise..like ugh)
  • Muscle pains (my muscles will ache and even my blood hurts my veins at times)
  • Joint pains (this is where the most swelling happens)
  • Mild fever (this is pretty much a constant)
  • Joint swelling (will also feel hot)
  • Swollen hands and puffy fingers (some days my rings fit and others…not so much)
  • Head aches, confusion, and memory problems (feel floaty, and out of my head)
  • Eyesight fluctuations

What Is Raynaud’s?

“Raynaud’s is a rare disorder that affects the arteries. Arteries are blood vessels that carry blood from your heart to different parts of your body.

Raynaud’s sometimes is called a disease, syndrome, or phenomenon. The disorder is marked by brief episodes of vasospasm (VA-so-spazm), which is a narrowing of the blood vessels.

Vasospasm of the arteries reduces blood flow to the fingers and toes. In people who have Raynaud’s, the disorder usually affects the fingers. In about 40 percent of people who have Raynaud’s, it affects the toes. Rarely, the disorder affects the nose, ears, nipples, and lips.”

So in other words my hands and toes (among other parts) go blue/white a lot and it’s painful and embarrassing.  If I get nervous or cold it’s the worst and can trigger “Raynaud’s attacks.”   During an attack, little or no blood flows to affected body parts.   Getting in and out of a hot bath for example means that I will have purple/black intensity in my skin coloring which is crazy cool to see, but not so much to feel.  Last winter my toes got so bad that I had ulcers pushing my toe nails up away from my toe…pain city.  I went to a vascular surgeon and they did all those tests to see how my blood flow was.  Well my blood flow was perfect up until you reached my wrists on my hands and my ‘knuckle’ above the toes and then flow ceased to exist.  There isn’t a ton that can be done other than avoid cold and avoid stress.  Texas should help compared to Utah as far as extreme temperatures go.

As far as fatigue, malaise, fever’s, swelling and pain goes…I deal.  I mean really there is no better way to say it other then I deal.  It never goes away.  I honestly get tired of being tired, and sick of being sick, etc., but this is a trial that I face.  I face it head on.  I go to my doctor appointments regularly…I take the medications that are appropriate…I try to be scheduled in my sleeping habits…I try and eat a balanced diet…I take my vitamins…and I try to see the positive side of all the experiences that I’ve had.  It’s never easy to have a chronic illness.  I think the hardest part (even harder then dealing with pain or infections/flare ups) is making commitments and explaining.  I hate to make a commitment…I just never know if I’m going to be sick that day or swelled up that day or whatever.  I never like to call and cancel or show up to something at only like ten percent of my best, but that’s how I roll.   I hate explaining to someone that I’m ‘sick’.  I ‘look’ healthy….I mostly ‘act’ healthy, so it’s hard for others to ‘believe’ that I have so much going on inside of my body.  So, don’t take me for a flake even when I act like one.  Don’t automatically assume that you know why someone is the way they are and don’t judge someone until you have walked ten steps in their ulcerated, swollen blue toes!

On a positive side.  Medicine is amazing.  The human body is amazing.  Life is amazing.  I pray we all can find hope in dealing with our biggest challenges.

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