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.

Traduire / Traducir / Verdolmetschen / Natłumaczyć / Tulkot / переводить / 翻译

The Uncertainty of Today by FortunatelyFunny

Today I had an all day meeting in which I sat in a hard chair, in a room full of coworkers, and I was in pain. They would never know how I felt though—I had a nice outfit on, my make-up was good, and it was a rather good hair day. See, I look very healthy, and frankly, I used to think I was. I grew up a life-long ballerina and have been a runner since my early twenties, even taking up yoga in my early thirties. I eat junk like everyone else, but I also love healthy food and a great glass of wine. Historically I have been “kind” to my body. Most people look at my plate, my outfit, and think I am so healthy. At least I look the part, right? Little do they know.

During my meeting, in addition to being in pain, I was dizzy; I was seeing spots with blurry vision in my right eye; and I had these horrible pains in my back and neck. I also had numbness in both of my hands and that cloudy feeling in my head. You fibromuscular dysplasia people know what I am talking about, don’t you? Like you can’t concentrate on what anyone is saying to you, and hoping you don’t jumble your words when you open your mouth. The dizziness was bearable though. The pain trumped all other symptoms.

I have several “conditions” (just like many of you do) and one defined “disease.” Symptoms seem to dominate one another depending on the day, week, or month. I try (quietly) to make sense of it. I have FMD. I have Chiari Malformation and Syringomylia. Yes, looking back I know I had symptoms of the Chiari and Syringomylia for quite some time. At age 11 I was diagnosed with scoliosis, which can be a result of congenital Chiari. They found it in a routine screening when I was in the sixth grade. By the time I approached the 7th grade, my spinal curves were out of control. I was required to wear a brace that ran from my chest to my bum. I wore it 23 hours a day for 3 years. It was hard, however, I am grateful for that finding. If it weren’t for that diagnosis, I may be deformed to this day. Little did I know that diagnosis would be a precursor to the disease and conditions I would experience in my adult life.

So back to my meeting… Was I experiencing issues from FMD? From Chiari and Syringomylia? Or all three? Who knows? My specialists sure don’t. All I know is that things were much more manageable before my most recent arterial dissections in 2010. Those dissections were in my right carotid and left vertebral arteries. One day I felt a pop and then began to suffer from what I thought was a bad migraine. I spent weeks in pain, infuriating pain that is. I kept trying to get up and go to work, to keep going. I had visual disturbances and I couldn’t turn my head; I lost my sense of taste; I had marked cognitive impairment and a host of other symptoms. I knew something was horribly wrong but I had no idea what it was. And surely I appeared to be a loony hypochondriac to my general practitioner, right? After a month and three scans including an MRI, MRA, and a CTA, they found something—several things that is. Ah ha! “Ms. FortunatelyFunny your right carotid artery is almost completely closed off, from blood that is, you have a carotid dissection.” It wasn’t until I found a specialist and had another CTA that they found the vertebral dissection, and then was formally diagnosed with FMD, Chiari Malformation and Syringomylia.

“I have a what you say!”

The puzzle pieces that came together after my diagnosis were baffling, often times too much for my mind to handle.

Looking back to 2006, I had experienced a traumatic C-section with my second child. I went into labor early, before my scheduled C-section. I ended up on the table with extremely low palettes (ITP) that they had no idea about prior to surgery. During surgery my heart rate dropped to 33 BPM, and I was given two doses of adrenaline to get it back to normal while on the table. Soon after pulling my second son from my womb, I had this horrible pain in the back of my head. I remember yelling “something is wrong!” and they just kept telling me to “calm down”…that I was fine. “Open your eyes Ms. FortunatelyFunny and look at me …keep your eyes open for me okay?” I don’t remember much after that.

I came home some 7 days later with a new baby boy with extreme colic. Six days later, I fell to my feet in my home. It was as if someone had taken a baseball bat to the back of my head. Literally. I couldn’t see; I couldn’t speak; I couldn’t walk. All I knew was that I had an infant in the house and my husband was outside. Somehow I had to get his attention. I army crawled to the door…and pushed it open while on the floor. I couldn’t raise my voice above a whisper. It reminded me of a nightmare I had often had growing up. Eventually, he came to the door. He found me.

He took me to the ER and I ended up at home some two hours later. Why? I “recovered” from it, indicative of a transient ischemic attack (TIA). The ER was full of sick people. As I started to come around in the ER, I panicked. I saw sick people around my infant, pulled the monitors off, and bolted. I spent the entire next 24 hours shivering, weak, and very sick. Thankfully, I came around. Three days later I had an MRI. They found nothing. Maybe they didn’t find anything because I didn’t have the right test or because someone missed it. Who really knows? The neurologist sent me home and told me I had fainted. I knew that diagnosis was horribly wrong. However, at that time in my life I didn’t have the strength, the knowledge or the resources to pursue anything other than that diagnosis. Other than telling a few people, I kept my thoughts to myself—for years. The fear of someone not believing me, or that I might be judged for being dramatic. That kept me quiet. Do those fears keep you quiet?

Six months later, in the fall of 2006, had another episode. I was at a lunch meeting for work. My sweet tea tasted horrible, so I asked for another drink. As I continued to eat I realized how bad everything tasted. That was the beginning I suppose. For weeks after that I couldn’t turn my head. I stayed out of work “sick.” I went to three doctors. I had cortisone shots in my neck. I tried massage. Nothing worked. I was in so much pain. I also mysteriously developed high blood pressure. I returned to work a week later. The high blood pressure resolved some eight months later, and eventually I got “better,” but I was never the same. I knew the difference.

I am in much more pain today. I am dizzy. But that happens a lot these days. I now consistently have high blood pressure, which I take medication for. A lot has changed. I know more now though. My arteries have dissected numerous times in various degrees (not all mentioned here) and along the way doctors found these brain and spine abnormalities, which have without a doubt gotten worse since my most recent dissections. My specialists say to me “Ms. FortunatelyFunny, we don’t know who’s on first.” And they certainly are not keen on operating on me for the Chiari and Syringomylia. The FMD and fragility of my vessels will be point of contention in that decision. Thankfully, I haven’t been pushed into making a decision on that surgery—not yet that is. I will cross that bridge when I get there. Still, I wonder, “If you don’t know what to do and how to handle it, doctor, then who does? How are you going to help me?”

So today, I felt bad. I felt isolated. I pushed through the day with this mental war going on in my mind. “Act how you appear. No one knows, keep it that way,” I told myself. I know you can relate. It is maddening sometimes.

I come to you with a serious first post; however, in my day-to-day life I make light of these issues. Doing so is good for me, good for my family, and my friends. If you don’t have humor in all this, then it can really take you down. My husband and I often refer to it as my “47 issues.”

I thank God for the sense of humor he blessed me with and for the ability to spread awareness of this disease, from all angles. It is my hope that others will be able to plug in to these thoughts. That they might find validation, hope, information, resources and peace in their struggles with this disease. So FMD family, let the blogging begin!



No comments:

Post a Comment

FMD Chat encourages comments and discussion; however, please note that use of threatening or profane language and comments that clearly have no relation to the original post will not be tolerated.