Do not be afraid to say “you know what? I may not look sick, but I just don’t feel well today.”

June 28, 2016

 

On November 9, 2010, this is the day my life with chronic illness began. I was in a car accident – fender bender – by which I shouldn’t have experienced anything else more than whiplash. I was experiencing the worst migraines including sensitivity to light, nausea and vomiting and insane pressure in my head that I have ever experienced. I didn’t have a history of headaches so this whole world was new to me. I was having spotty vision, occasional numbness and tingling on the left side of my body. The whole experience was just bizarre to me. It took a variety of doctor visits to finally get an MRI about 3 months later when these headaches just wouldn’t go away!

 

 

In February 2011, after the MRI, I was diagnosed with Chiari Malformation and Syringomyelia. At this point, I was a senior at Villanova University getting prepared to graduate, get married in July and starting law school in August. Chiari Malformation is a condition in which the tonsils of the brain extend into the spinal canal thereby causing a disruption in how the spinal fluid flows. This irregular flow causes pockets of spinal fluid inside of the spinal cord called Syringomyelia. My neurosurgeon advised I needed surgery but I had so much going on at that point in my life (graduation, marriage, law school AHH!), brain surgery was the last thing I wanted to do. I proceeded as normally as I could, finished college, got married to the love of my life, Joe, and started law school.

 

 

Unfortunately, during my first year of law school, both conditions took a turn for the worse and I had to have emergency neurosurgery in October 2011. I had a golf ball sized piece of my skull removed, my head shaved, and 25 staples in the back of my head (they call us chiarians “Zipperheads” because our staples all together look like a zipper lol!). I was in the hospital for close to two weeks.

 

 

Fast forward to around 2013. I was still having migraines, chronic fatigue, my body just HURT all the time. I wasn’t sure if was chiari related or if it was something else. I saw a Chiari Specialist in New York who discovered that in addition to the two conditions I have, I also have Type 3 Ehlers-Danlos Syndrome – a connective tissue disorder where my joints are “hypermobile” causing joint pain and inflammation, dislocation and instability. What was critical about this discovery is that is explained why certain movements caused me pain (i.e. looking down too long at my books, , – essentially because my neck joint is unstable my head was basically like a bowling ball balancing on a straw! It doesn’t have the support it needs for any sort of jumping or jolting activity like running or rollercoasters. This shed a lot of light on some of my physical limitations.

 

Finally – my PCOS. This took about three years or so to get diagnosed. I used to have relatively normal cycles until, ironically, until the accident. But around 2013, that was when my cycle just halted. I would go weeks or even months without a cycle. I thought it was just me coming off the birth control and that it wasn’t anything. Doctors didn’t seemed too concerned. I had prolactin come up in my blood tests (which we still have no idea why!), I gained about 60 lbs over the course of the 4 years. I finally got diagnosed as recent as December 2015 and that’s when I decided to make a change with my body.

 

 

HOW I LIVE WITH MY CHRONIC ILLNESS(ES)

1)      My Support System – Number one, above all, I would be nowhere close to where I am today if it wasn’t for my husband, Joe. His patience, compassion and faith in my strength to persevere with these illnesses has been quintessential in not only living with these illnesses and not letting them get in the way of my goals!  I am so grateful for him in my life and dealing with me on my “bad days” and helping me live my good days to the fullest. And if you don’t have someone close that you can open up to about your conditions, please, PLEASE utilize resources that are available either in your community or even online. In my opinion, having a support system, no matter how small, is critical in managing something as daunting as a lifelong battle of chronic illnesses

 

 

2)      Being Flexible and Adaptable– I played a lot of “trial and error” figuring out what physical activities I could do and what I couldn’t. It would be frustrating learning when there was something I couldn’t do anymore that I used to be able to. It took me YEARS to figure out what physical activities were okay, what gave me discomfort and what just weren’t worth the risks. It sounds silly, but for example, I REALLY miss going on rollercoasters but the jolting with my head is just something I know I can’t do anymore. Now that I figured (most of) it out, I am down close to 30 lbs with a mix of strength training and spinning (within my abilities) and eating a PCOS-friendly diet.

 

3)      Listening to My Body – Let me tell you – this is the hardest one for me to listen to. I’ve always been a busybody (drives my husband crazy! Haha). I’ve always been someone who needs to do something, be somewhere, and be active in my community. Sometimes though, my body just says NO. These are days I have to cancel plans, lay on the couch and let your batteries charge. Having a chronic illness is like having a smaller tanked car when everyone else is driving a large SUV. I have a 10 gallon tank when everyone else has double. It just takes more trips to the station to refill my tank – these are the days I have to take a step back and just relax.

 

4)      Never, EVER Giving Up – this is key. It’s a lifelong battle but this is YOUR life. Your chronic illness does not define you, nor should you allow it to ever sit in that driver seat. You are in the driver’s seat so as long as you choose to be. I would have never finished law school, passed the bar exam, held down a full time job had I let any of these things take the driver’s seat. I control what I do and when I do it.

 

All in all, my goal as Mrs. Delaware County America (and beyond!) is two-fold. I hope to inspire those who have chronic illness, whether it be PCOS, mental illness, Chiari, Lupus or any other invisible chronic illness to be visible. Do not be afraid to say “you know what? I may not look sick, but I just don’t feel well today.” Don’t be afraid to advocate on behalf of yourself and those who have similar illnesses to you. Keep fighting and take care of your body. Secondly, my hope is to inspire the community around us to have compassion for those who have invisible illnesses and to not be judgmental because there is more than the eye can see.

 

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