Passion Project #1 – Lessons in survival and resilience when the world as one family knew it changed almost overnight. My dear friend Mandy tells us about her silent battle with Dysautonomia in her words.
Please tell us about your diagnosis.
I have been diagnosed with Dysautonomia. Dysautonomia is a malfunction of the autonomic nervous system. The autonomic nervous system controls all the involuntary functions of our bodies such as heart rate, blood pressure, digestion, pupil dilation, sweating, breathing, and so on. I am primarily affected by Postural Orthostatic Tachycardia Syndrome (POTS) which means when my body is upright it does not function as it should and has trouble regulating itself. People with POTS present with an excessive increase of heart rate upon standing at times accompanied by a drop in blood pressure. The heart beats so fast that it does not deliver properly oxygenated blood throughout the body and this causes dizziness, shortness of breath, chest pains, nausea and fainting. I also have Undifferentiated Connective Tissue Disease (UCTD)- when the body mistakenly attacks itself and presents as an overlap of the following Rheumatoid Arthritis, Systemic Lupus and Scleroderma.
Tell us a little about your medical journey so far. When did symptoms first arise?
My condition took a turn for the worse 2 years ago after getting sick with Strep and Mono shortly after. Initially I was unable to stand to even go to the restroom, I was fainting several times a day (this is when we discovered my heart rate was fluctuating between too fast and too slow) which means the sinus node in my heart was malfunctioning requiring me to get a pacemaker placed. Prior to all this I used to work as a Full Time Director of an Academy, I was a very active mom and enjoyed being involved in all sorts of activities. Baking was my favorite thing to do which I do not do much anymore.
Are you currently undergoing any treatments or therapies?
I am dependent on Normal Saline infusions through my port daily (this helps with volume resuscitation and blood pressure). Many patients with POTS are hypovolemic which means we have a lower blood volume in our bodies. I have to take medication multiple times a day to regulate my body (beta blocker) to suppress tachycardia (fast heartbeat) and when it goes too low my pacemaker increases it on demand. I take medication to prevent fainting, shots to help with chronic migraines, anti-nausea medications, Proton pump inhibitors to regulate stomach acid production, anti-inflammatories and medication for UCTD among others.
What is a typical day like for you?
I have to wake up an hour before my children to take my beta blocker in order to be well enough to tend to them and see them off to school. After they leave for the day, I usually have to lay down for a little longer, eat something small in order to be able to take the rest of my morning medicine. I do some light house work but modified in order to do them safely. Depending on the day I go to the doctor, physical therapy, or stay home and read, crochet, color, craft or spend time with Shadow, my service dog. I don’t often go to places by myself because I can become symptomatic very easily and it would not be safe or I would have to call someone to come get me. Sometimes I am suddenly overwhelmed with crushing fatigue- and nothing helps. When the kids are home we play board games, puzzles, watch movies, read and craft together.
Tell me about your support system. What do they mean to you to go on this journey with you?
My kids and my husband are what keep me going. Being able to see their smiles and holding them keeps me wanting to push forward. My husband is incredibly supportive and always by my side encouraging me to not give up. Both the kids and him love me unconditionally despite my flaws. My sister, her husband and Shadow…they get me and don’t judge me. The extend a hand and in Shadow’s case a paw when I need it. My online support group (DSN) have taught me to advocate for myself and when I feel alone -they are always there.
Do you have any fears or worries?
I fear the unknown. There have not been many studies on my condition and many doctors do not fully understand how to help us. This makes treatment very difficult and the amount of doctors willing to work with us medical mysteries is limited.
Can you imagine a cure/resolution to this illness?
I don’t imagine a cure. However, I hope for strength to continue every day and that symptoms are manageable so I can continue to enjoy life.
What do you want people to know about your diagnosis/challenges?
The illness is invisible. It does not matter how pretty or young you are- you can still be very sick. That is what makes it so hard to understand. Someone may look strong and healthy but the problem is beneath the surface. Even when I am smiling, I am battling something. It is never a symptom free day. Some days are harder than others but I always try to push myself. You will not see me outside on really bad days (that I share only with my internal circle). Chronic illness, especially an invisible illness is hard. Imagine from one night to the other having your freedom, independence and your entire world striped away. Not being able to go for a walk alone, or a store, taking your kids to do fun things outdoors, being restricted to a certain distance. I never get a break from being sick, it is not like getting a cold or having to get up after a late night.
Do you have any advice for someone else going through similar issues?
- Find an online support group and connect
- Learn as much as you can about your illness
- Advocate for yourself
- Don’t stop living (learn to modify)
- Listen to your body but don’t let your illness define you
- You are STRONG
If you would like to learn more about Dysautonomia and how you can support others battling this, please visit www.dysautonomiasupport.org
Sometimes the strongest among us are the ones who smile through the silent pain, cry behind closed doors, and fight battles that no ones knows about.
I am the owner and photographer behind Awesomesauce Photography in Richmond, VA. My photography career began with a focus on weddings but after several years in business, I found that my deeper passion is about spreading and documenting love. In between the highlight reel of life that is often showcased on social media, life is imperfect and messy. Love can be found in the day-to-day activities, often going unnoticed. So many of us are battling something silently. Be kind and spread love.