You didn’t know that I have not one but TWO diseases? I know, I’ve been hiding it. Unless you are very close to me you probably didn’t realize that I’ve been struggling living with two diseases for over a decade.
I was born with Hereditary Angioedema but wasn’t diagnosed until I had my first attack at 18 years old. Hereditary Angioedema (known as HAE) is a rare genetic disorder that causes severe swelling. I was born with a low amount of C1 inhibitor (a natural protein in the body) which causes small blood vessels to push fluid into nearby areas of my body and cause rapid and extreme swelling. The simple way to put it is my body can swell painfully without notice in minutes. They can’t pin point exactly what triggers attacks but they do believe hormonal changes, stress, anxiety, any trauma (even as small as stubbing your toe) and surgery can be major factors. My attacks have been internal and external. My throat has closed, my organs have swelled (which makes them started crushing each other) and lips have been bigger than Bubba Gump’s. I’ve had minor attacks where my hands or feet swell but HAE can be dangerous and painful. When I swell internally, I feel sharp blade-like pain and start to vomit. It can also cause your throat to swell and close your airway. It comes on so quickly that I can be incapacitated within minutes.
One year later, at 19, I was hospitalized and diagnosed with Ulcerative Colitis (UC). UC is an autoimmune disease that causes ulcers to form in your large intestine and when food passes through, it makes them bleed. The blood exits through your rectum (yep, that’s your butt) and is urgent and painful. Embarrassing, right? There were years I couldn’t leave my house to go to the grocery store without mapping out where the bathrooms were on the way. Most days I just wouldn’t leave the house at all. Doctors can’t explain what causes either disease and at this point, neither have a cure.
I’m not the only one who suffered. My family did too in different ways. My Dad’s oldest sister was diagnosed with Chron’s (UC’s sister disease) and passed away from complications after a surgery when she 21 years old. My Dad attended her funeral on his 13th birthday. Having his daughter diagnosed with a related disease broke his heart and brought back a lot of painful memories. My Mom felt guilty that she was the gene that gave me HAE. She has always dropped everything and been by side for every serious episode. She has cried with me and I can tell you from just watching my son be sick with a cold, she took an emotional beating I never understood until recently.
This is a very vulnerable post for many reasons. I hate talking about it. I’m embarrassed. I have emotional scars, some painful days and moments of insecurity. I’m not looking for pity or to get attention from sympathetic people. I don’t want to be known as a victim or viewed as weak. I’ve been called a “sickly person” many times and it makes me cringe. I’ve had people make jokes “don’t bleed on me haha” when I’ve sat beside them in a car. I’ve felt humiliated over it. I’ve been short and rude when I was in pain. I’ve been flaky on plans without ever explaining the real reason behind it. I wanted to hide it but it in the end that ended up hurting me more. I now refuse to let my diagnosis define who I am. Guess what? I’m okay. I can talk about it because I’m at peace. It took a long time to get here and some days I thought I never would.
Emotionally I’ve felt robbed. I’ve had to watch my goals and dreams fade away. I had to give up dancing professionally, drop out of university and not be able to fully invest in a collaborative business venture. Stress is a huge trigger for both diseases and I’m a worrier who keeps things bottled up. Through auditions, dancing in another country or taking classes, it always ended the same way. I was back in the hospital.
It took almost 7 years and a lot of medication/side effects later (prednisone, ugh, the worst). It all came down to proper medication (no more pills), diet and exercise to find what works with my body. I have learned skills I never thought I’d be able to do like giving myself injections. I am a STRONG person now. I infuse my vein every 4 days with my HAE medication from home. I am so thankful that because it is a natural protein my body is missing there are no side effects and can stop attacks within an hour. For UC, I go to my clinic every 7-8 weeks to be infused for 3-4 hours with a medication called Remicade. It allows my brain to recognize what I’m digesting is food and doesn’t attack it. It changed my life. The biggest moment for me was that I traveled Europe for my Honeymoon! A year prior, I wouldn’t have left the house to go to the bank. Along with proper diet and consistent exercise, I now enjoy life fully.
The worst time in my life was during my pregnancy with Bronson when my organs started swelling and crushing him. The added hormones from pregnancy was a serious trigger for my HAE and it started happening weekly. We had so many scary moments and it makes us value our little boy so much more. There was a day when we rushed through emergency and the Doctor couldn’t find his heartbeat. I had 3 PICC lines (a long tube they insert into a vein in your arm that goes to the vein that carries blood into your heart) inserted and removed. The PICC line was how I gave myself the medication I needed daily. One by one they got infected until we realized that it was actually my body rejecting them and causing serious blood clots. Going forward we had to inject my leg with blood thinners on top of having to infuse my veins with the HAE medication every single day. Double whammy. Days after my sister gave birth, I was hospitalized for over a week and told I wouldn’t be going back to work. I was so grateful that I made it to full term and at 37 weeks was medically induced and delivered a PERFECT HEALTHY boy! My Specialist (who ended up performing my high-risk c-section after 32 hours of trying for a natural birth) said afterwards that I got the worst beating in pregnancy she’d ever been apart of and knew I endured all of the sickness so he would have none. Ugh, still makes me cry!
It has also been a surreal experience that has changed me for the better. My mom always says to me on hard days that “God doesn’t give you what you can’t handle.” I believe that. I can relate to a lot of people who are just being diagnosed or know someone who is. I’ve been through it and I want to help others. I am willing to give them ANY and ALL information I know to reassure them that even if they don’t see it now, one day they’ll be okay. I have so much more compassion for others. I hope I can make a difference.
There is a lot of good to come out of this as well emotionally. My immediate family, my husband, my best friends – we are bonded. When you are at your weakest and experiencing your darkest thoughts people showed up to remind me I’m not alone. Disease can feel isolating and it’s easy to push people away. My loved ones stepped up.
My main priority is that if you’re reading this and struggling with a similar situation, I’m here. I’ll listen! Try to be optimistic and don’t give up. Eventually you will start to believe those positive thoughts you’ve been telling yourself. You will find your best friends for life in the process. You’ll also lose some but those aren’t the type of people you want around anyways. You will always know the people in your life are genuine and love you. You can pursue your dreams (hello…this blog!). They just may be new dreams or not the way you imagined it would be originally. It may just be even better!
Everyone faces struggles and I hope this post is a real reminder that no matter how it looks from the outside, everyone has a story. Be kind. Be empathetic.
Does this relate to your or a loved one? Don’t hesitate to leave a comment below or e-mail me at firstname.lastname@example.org. I’d love to hear from you, whether you need some advice or just another person to listen. I mean it, I’m here.