fibromuscular dysplasia support, education & advocacy
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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Fear: The Silent Motivator By FortunatelyFunny

Fear can be defined as:

1. An unpleasant, often strong emotion caused by anticipation or awareness of danger and accompanied by increased autonomic activity.

2. An unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.

Neither of these definitions actually defines the fear I have felt in my experience with fibromuscular dysplasia. Quite frankly I didn’t understand what fear really was until I had to stare this disease in the face—had to think about how my young children might have to live life without their mother, and my husband without his wife.

We all live with fear in varying degrees. We are all aware that when we wake up tomorrow, it could be our last day. But let us push through all the semantics for a moment and talk about that real fear—no hypothetical scenarios here. Those of us who have faced fear in a way such as with FMD have a unique torment.

We got this fear honestly, didn’t we? Some us arrived at an emergency room with failing kidneys and blood pressure so high it baffled doctors. Others of us, young sudden stroke victims, left with physical impairments that seem to age us in a way that is both infuriating and saddening. A disease that can effect the arteries leading to one's brain, abdomen, arms and legs is a scary one indeed. A disease that can at any time decide to affect a new artery when it pleases, and rear its ugly head in an emergent way, will without a doubt produce fear.

For me, going back to “life” as my carotid dissections were “healing” was in many ways more difficult than being home “sick.” Technically, I was well enough to work and resume a so-called “normal life,” but I was left with horrible side effects from the dissections and develop pseudoaneurysms from the tears. These are the types of aneurysms that have already broken through one layer of the vessel, often thought of as the most precarious of types. I remember numerous occasions, weather it be putting apples in a bag at the grocery store or just walking down the hall at work, that I fretted. What if today is the day it bursts? Will I get help quickly? Is my life in order? Are my will and testament and all other related documents complete?

Doctors were not sure if they needed to coil my largest (growing) aneurysms due to the dissections or just wait and watch it. So they waited and watched. And watched. And it grew. And then it shrank a little… and then it shrank a little more. One year later, it was almost completely gone. Yes, there is scarring and some permanent stenosis, but I am unbelievable blessed and oh so grateful.

This is just one example how I acquired this fear through my bouts with this disease. I would love to say that my fear is gone now, but it isn’t. Considering I have had numerous dissections in the arteries leading to my brain, I often wonder… When will the next one happen? Where will I be? Will I be enjoying life? Will I be doing something that maybe I shouldn’t be doing? If I die or am permanently impaired, will my family, friends, or coworkers quietly blame me for pushing past my limits?

My limits. Oh, that is a entirely different blog. But in short, other than some general guidelines, most doctors really don’t know what to tell FMD patients to do or not to do. Each case is so different and the lack of concrete information leaves a gap as wide as the Grand Canyon in opinions from specialists treating FMD patients. For me, I am sure one of my major dissections happened while I was jogging, but I am also fairly sure one happened while I was fast asleep. How does one move forward without fear when one is faced with those black and white scenarios?

Me—I push the envelope and I know it. My life demands it of me. I must have a full time job, I must try and keep up with my growing boys, and I must be a wife, coworker and friend. It is not an option. However, I truly believe the Lord has blessed me and healed me to able to meet these demands. In some ways, I think I wouldn’t have it any other way because it pushes me to the brink and brings about a lot of growth that would otherwise lie stored inside me, untouched. In other ways, I feel as if I am constantly failing those around me. In my world peace runs along side fear, each have their own place in my thoughts a decisions. But fear has without a doubt played a large role in my decisions over the last two years.

I don’t make my fear public. But it is always there. Lurking. I recently had a long period of reprieve. I felt fabulous for weeks on end. And then it came back—the debilitating fatigue, dizziness, pain and nausea that I shouldn’t speak about. The fear always follows with those spells. It reminds me that I do have this erratic disease, and no matter how hard I try to wish it anyway, it is going to be there. However, I have learned to embrace this fear as I good thing in some ways. I definitely won’t have quite as much to retire on when and if I am blessed to do so one day. Because well, we take a few more vacations now and definitely live each day to the fullest.

Imagining someone else’s fear it nearly impossible. One hears someone’s bad news and says, “Oh, I can’t imagine how he or she feels.” Yes, that is correct, one can’t imagine, unless one has been there. And that fear, that emotion, will make one wish and hope no one else has to feel the way one did ever again. It is why people vow to make a difference. It is why the cancer survivor raises money for the walk; it is why patients of all types of diseases ban together for research. It is why we, patients with fibromuscular dysplasia, are here.

The unique challenge we have? We are “rare” and our voices are small. But motivated by the fear that comes with a lack of answers, we are in fact connecting to one another. We are seeking to utilize the diverse group of experiences for the benefit of all FMD patients and the medical community alike. So would you say fear is playing a role in making a difference?

I said this blog was about fear, I never said I thought it was necessarily a bad thing.

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