My name is Angela – Jesus follower, new wife to a wonderful man, sister, daughter-trying to find joy each day, trusting that God has a plan, and that the adventures he leads me on are good, even when they might not feel like it. Oh, and yeah, currently on an adventure to become a one legged woman.
I was born with a genetic disorder. The closest diagnosis I’ve been given is Blue Rubber Bleb Nevus Syndrome, but because the way it presents itself in my body is not typical of the disorder my doctor calls it Angela’s Syndrome. So what is it? I was born with extra and irregular blood vessels on the left side of my body. The blood vessels form masses called venous malformations. For me this occurs only on the left side of my body. The extra blood vessels cause pain and there is risk of blood clots and bleeding. The treatment is called sclerotherapy. Injections into the bad blood vessels essentially burn and eventually eliminate the blood vessels. Some of them form large enough masses that they can be surgically removed. The treatments are painful and done under general anesthesia. The extra blood vessels genetically reproduce so treatments are done usually once a year to help with pain. I have been having treatments since I was five years old. There is no cure and as I get older there are secondary issues that occur, such as, arthritis and wear and tear from chronic pain.
The biggest issue currently is my left knee. I am beginning the process to have my left leg amputated because the deterioration of my knee has gotten to the point where there is nothing left to do. I am unable to straighten my knee, it is frozen in a 90 degree angle and causing significant pain. There is no cartilage in the knee joint and the extra blood vessels surrounding my knee make typical treatments (i.e. knee replacement) impossible. This is my best chance to someday be able to walk again and have less pain.
But my condition is not what defines me. Yes, it is a major part of my life and has been something that has shaped who I am. But it is not all that I am. I am a Christian who loves Jesus and needs Jesus to strengthen me through all of this. I am a wife who loves her husband more than I ever thought I could. We recently got married (May 2016) and I am so grateful for all that he does. He is my helper and encourager, and my best friend. I can’t imagine going through this without him, and I’m so grateful to God that he chose to bring him into my life at just the right time. I am a food lover and travel lover and one day, after the leg amputation adventure coming up is over, this blog will be full of recipes I’ve tried and places I’ve traveled.
I heard a sermon recently where someone said that life is not a journey, because journeys have an end or destination. But life is a series of adventures that God brings into our lives. Some are fun, some are painful, but all of them grow us, and all of them we can be thankful to God for. So I hope that writing about my adventures will help and encourage readers and ultimately bring glory to God, who writes all my adventures.
Angela and family are raising support for her upcoming journey to Boston for her above the knee amputation. Please check out her fundraise.com page.
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