Do you ever watch the news show CBS Sunday Morning? Probably not. My kids say it’s for old people. But what I love about CBS Sunday Morning is they tell real, in-depth news stories – as in, they can last a whole 10 or 15 minutes. They profile cool places or inspiring people or interesting events and give it more than a 15-second sound bite. Our world consumes so much through quick images and words (Instagram, Facebook, 24-hour-news cycles) — and so much of it is negative or snarky or just plain wrong. So it’s been on my heart for a while to find a way to tell the stories of people I see doing incredible things… there are so many inspiring stories out there of people who are helping others, doing good things, climbing metaphorical mountains. So these little “She Believed She Could” profiles are just my way of trying to put some inspiring and good stuff out there. This post is a guest profile written by my friend K, who was diagnosed with a life-threatening condition, hereditary angioedema, in early 2015:
Hereditary Angio-Edema (HAE) is a very rare and potentially life-threatening genetic condition marked by episodes of swelling in various parts of the body (internal). The mortality rate is 30 percent. It is hard to diagnosis and many people go through years of exploratory surgeries and missed diagnoses. For some, HAE causes attacks once every few months or years. For me, the attacks happen daily. I do not know my triggers, so there is no way to prevent an attack. My swelling is primarily in my abdomen, but sometimes (on the most scary days) it goes to my airways.
I spend every Monday morning at the hospital. Sometimes the swelling is so severe that just walking from one room to another is all I can manage.
I have a husband and two teenage girls, and life since my diagnosis has been tough for all of us. A year and a half ago I was running, biking, and playing tennis almost every day. Now, I can no longer do simple things like shower. (I have an accessed port, so I can take an actual shower only once a week. You may not want to hang out with me on Saturdays; I’m much fresher on a Monday morning.) I can no longer exercise once a day, let alone twice like I used to. I’ve had to learn to stop sweating the small stuff like no longer achieving my old goal of 10,000 steps a day (sounds silly but is very tough for me to let go) and not wearing pants with a button/zipper (this is easier to handle – who doesn’t love lazy pants?). I’m looking forward to getting my attacks under control and going on a grand shopping spree for pants with zippers.
When something like this hits you, you have two choices- focus on your blessings or spiral down into a dark hole. I am blessed in many ways. I’m married to a physician so I get released from the hospital after treatments instead of having to stay. And he carries me when I’m unable to walk. I have an incredible doctor who gave me his cell phone number and wants me to use it. I have parents who love me and are always there. Friends who offer to drive my kids, pick up milk, hang out at my house, and give me grace when I don’t show up to things – they still invite me. I have wonderful nurses who take incredible care of me, even coming to my house on their day off.
I no longer worry if my house isn’t completely picked up – instead, I spend what energy I have with my family. I’ve learned to listen to my body and rest up during the day instead of running errands or exhausting myself with projects around the house, so I have the energy to run the girls to activities after school and try to make dinner.
But on the tough side, it can be lonely. I don’t want to talk to anyone about the negative things, but keeping it in is a lonely place. I struggle when I can’t do everything I want for friends and family, and it’s super frustrating fighting with the insurance company to get my medicine covered. I also hate feeling like a burden- becoming the person who needs care instead being the caregiver. I’m in a fight with my body every day. I want my old life back. I worry that my airways will close and I won’t get my medicine in time… or even worse, that a denial from the insurance company means I won’t have access to medicine at all.
Mostly, I worry about the worst happening – leaving my girls and husband behind. I’m their backbone. How could they do life without me?
But here is what I’ve learned, and what I try to focus on:
• I’ve realized I’m a good mom. I’ve raised great kids. They are able to step it up. They can make dinner when I can’t, make their own lunches, know how to give me my infusions, keep smiles on their faces when I know they are sad and worried about me. It shows me I’ve raised strong independent girls who love me and can take care of themselves. I’m extremely proud of this.
• Only when I had to travel to the doctors in California did I miss one of my daughter’s tennis matches. I put my family first and try very hard to never miss a chance to support them.
• I’ve worked hard trying to find a cure. I try to have a smile on my face for anyone I see. I try to make my caregivers happy. I just sit and let them do their job, no matter how many times they have to stick me or how many times I have to try to explain my disease to them.
I really believe that God gave people the ability to discover new meds and new treatments. Now I’m part of that process. I’ve talked to researchers, and attended medical meetings to share my story because I’m a “special” case that even leading specialists in the field can’t figure out.
And by sharing my story, I know it’s helped others. A friend of mine told her dad, Dr. Pine, about my condition. Because he and his wife are both medical professionals, they were interested in the rareness of HAE and researched it. A few weeks later, Dr. Pine was working in the ER in Atlanta, and got a call that there was a patient coming in from a small hospital in rural Georgia. The doctors there had given her the usual meds but were having a hard time getting her airway to remain open. Dr. Pine called his wife and asked her the names of the emergency medicines I use. They got those meds ready and gave them to the patient when she arrived in Atlanta. Immediately, she was able to breathe. I feel that was a true miracle. Maybe saving her life is maybe why I’m going through this.
I would tell others who are newly diagnosed and facing an illness – whether it’s temporary or life-long – to take it one day at a time. Attitude will make or break you. On a good day, celebrate it. Go for a walk, play some tennis, go to lunch with a friend. On a bad day- give yourself some GRACE (this is way harder than you may think). Relax, drink a diet Dr Pepper, eat a cookie and watch some worthless tv. The dirty dishes will still be there tomorrow. Try to look for the blessings because once you do, you will realize the blessings far out way the bad.
Believe God has a plan. Because he does.