I didn’t choose this to happen…it chose me!

Vasculitis Awareness Month

So, May is Vasculitis Awareness Month. Most people and even some doctors have never heard of Vasculitis. So, this post is going to be an informative post about this rare disease and how it has affected my life. And yes, I know the month is almost over. But when my health is unpredictable, it is hard to plan stuff. So, now I am finally getting around to writing this.

Vasculitis – What is it?

According to the Merriam-Webster dictionary, vasculitis is defined as the inflammation of a blood or lymph vessel. More specifically, the inflammation of arteries, veins or capillaries, and blood vessels. With inflammation, damage can be done to the inside of the vessels such as narrowing, weakening, and even blockage.

Because of the harm that inflammation causes to the blood vessels, there can be some life threatening issues that come up. Because your body needs blood everywhere, when that blood gets restricted, your body will have a harder time operating at its full capacity. Vasculitis is classified as an autoimmune disease of some sort because your body is attacking your blood vessels by mistake.

Now, doctors are not even sure what exactly causes this. There are some theories that it can be caused by medicine, infection, another disease, or even something unknown. Inflammation in and of itself can be very painful. Because blood flow is harder, the parts of the body that are affected can swell, go numb, turn red, get warm, and even lose the function of the specific tissue.

My Vasculitis

There are several different types of Vasculitis. The Vasculitis Foundation lists 14 different types of Vasculitis. Getting diagnosed with this disease always requires a blood test and a tissue sample. There is a test which measures a protein in patients. The test is to check the protein called ANCA (antineutrophil cytoplasmic autoantibodies). However, some patients can be what is called ANCA-negative.

I am  one of the lucky people with ANCA-negative Vasculitis. I also get the privilege of my doctors not knowing which process I have. I present a lot of symptoms of several different types of Vasculitis. This has definitely made it interesting when trying to get a specific diagnosis.

My Vasculitis has been almost everywhere in my body which can be good and bad all at the same time. I had surgery to remove a large affected piece of my colon. I also had five masses in my right lung. Most of the nodules in my lung went away with steroids. However, there is one that was almost completely gone but has now returned. It is the size of a ping pong ball.

To me that is probably one of the weirdest parts of this. I have this mass just sitting in my lung. I feel it when I breath deeply but most of the time I forget about it. It is just weird that there is this thing sitting in my lung.

On any given moment of any day, my arms and legs go numb from the inflammation in my body. I have chest pain that cannot be explained by the doctors. I have sores that pop up on legs, neck, in my nose, and in my mouth. This sounds gross but it is just the blood vessels that are being affected. Now, thankfully, my inflammation markers are going down which makes my symptoms not be as extreme and even sometimes nonexistent.

Probably the hardest part of Vasculitis is the fact that it can be completely invisible. Just because you can’t see something doesn’t mean it is not real.

Some common questions

Is Vasculitis curable?                The answer here is no. Now, some people will have it one time and never again. Other people will have it one time and then off and on for the rest of their lives. Different patients will live with it forever.

Is Vasculitis contagious?          No, it is not.

What is a flare?                            A flare is when your body has been in a state of remission or the vasculitis is inactive and then your body goes back into having symptoms.

What is remission?                    This is when the vasculitis is inactive or being controlled.

 

 This is just an overview of Vasculitis. Vasculitis has become an important part of my life. If you have any questions about Vasculitis or just want to know more, you can go to the  Vasculitis Foundation.

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