As a food blogger I rarely blog about anything besides food. Today I’m taking the opportunity to share some insight into myself as The Stay At Home Chef you probably don’t know. I hope that my story inspires you and brings you hope for whatever miracle you are in need of in your own life.
It all happened in October 2010. It’s been four years, and it is a privilege to share the story with you.
I had a difficult pregnancy with my son, Dexter. When we decided to try and get pregnant again we thought it couldn’t possibly be any worse. I found out I was pregnant before I could even get a positive pregnancy test. The “morning sickness” had hit almost immediately and I couldn’t keep anything down. A couple of weeks later it was confirmed by a pregnancy test. We had to start telling people at the 6 week mark because I was so ill I couldn’t hide it. A couple weeks after that I was hospitalized for hyperemesis gravidarum (HG), a condition recently brought onto the public stage by Kate Middleton. It is something far beyond morning sickness. I was in and out of the hospital a few times before I was set up with a PICC line and home nursing care where I was on intravenous fluids 24 hours a day.
Just when I should have been getting better, things took a turn for the worse when I noticed something wasn’t quite right with my heart. I started to lose the ability to walk. I would take a few steps before I would simply collapse. My legs would simply give out. I went in for my weekly (yes, weekly) doctor’s appointment and was immediately hospitalized when he saw I could not walk. Test after test was conducted. After a brief bought of being unable to breathe, I was put in the ICU. Someone died down the hall from me that first night. No longer could these symptoms be blamed on HG.
Something was going terribly wrong.
At 18 weeks of pregnancy I was experiencing Congestive Heart Failure and I was showing signs of liver and kidney failure. It was strongly recommended that I abort the pregnancy to save my life. My OBGYN, a good Catholic man, was supportive in my absolute insistence that I see the pregnancy through, at least until viability at 24 weeks. I was released from the ICU in order to travel to see specialists
I saw doctor after doctor after doctor. No one could give me answers. Upon seeing my very pitiful condition one doctor, a cardiologist, simply dropped his jaw in amazement, and, after composing himself, simply said, “Something is profoundly wrong with you. I just don’t know what it is.” Those aren’t really the kind of words you want to hear from a doctor.
I was dying, and everyone knew it.
There I was, a young wife and mother of a 2 year old boy with an ever growing pregnant belly, unable to walk, hooked up to an IV pole, sleeping 20 hours a day, and slowly wasting away as my body systems shut down. I made my husband take me outside, just so I could see something, anything. All I could do was sit on a bench.
But you know how this story must end as I’m sitting here writing it for you 4 years later.
It was a last ditch effort by an OBGYN who researched tirelessly for an answer. Many of the specialists had mentioned it in their brainstorming sessions, but each had dismissed it as a possible diagnosis. It was an autoimmune condition called Addison’s Disease, treated by simple corticosteroids.
Three small pills saved my life.
Addison’s disease is an autoimmune condition where your body basically attacks itself and kills off your adrenal glands. The adrenal glands produce cortisol, the only hormone necessary for life. My adrenal glands had been ravaged and later tests revealed they were completely nonfunctional. Without cortisol my major organ systems were unable to function. I had been experiencing what is called an “Addisonian Crisis.”
I shouldn’t have lived.
Several very experienced and respected doctors in their fields have reviewed the test results from that time with the same response. I shouldn’t have lived. An untreated Addisonian Crisis normally leads to death within a matter of days. I lived for weeks. If I hadn’t been there standing before them they couldn’t have believed that a patient with those test results could have lived. It was a medical impossibility.
I am a miracle
My heart, liver, and kidneys began functioning again, but there was one big question that still remained: would the little baby girl inside me survive? Shoot, would I even survive labor? At 21 weeks I began experiencing pre-term labor and fought it for the remainder of my pregnancy. While my labor and delivery was a far cry from ordinary, I am happy to report that I delivered a healthy baby girl at full term.
My daughter is a miracle.
4 years later I still suffer from the consequences of that pregnancy. Addison’s Disease is a lifelong condition for which there is no cure. My body is dependent on replacement steroid doses that I take multiple times a day. Cortisol needs vary from day to day and hour to hour. There are no tests to tell me how much I need so I have to just guess.
Miracles aren’t always what you expect.
I am not healed. I never will be. I have good days and bad days. Every once in a while Addison’s Disease lands me in the hospital fighting for my life. I have come very close to dying a number of times over the past few years. I spend days and weeks at a time where I’m sick in bed and hardly able to function. It is hard. I suffer. I am disabled, for the rest of my life. It is a hard pill to swallow.
I think in the end we all have our Addison’s disease.
Whether it is a chronic illness, depression, financial struggles, relationship and family problems, addiction, or something else, we all have something we fight. Some people ask why God would do this to me and place blame on him, but I don’t see it that way. I have seen how Addison’s disease has pushed and stretched me.
I am grateful for my illness. In fact, it’s quite possibly the best thing that has ever happened to me because it has taught me how to live.
My struggle is helping me become who I want to be. Yours are too. It isn’t always easy to see it, particularly in those moments where we are suffering and either literally or figuratively in the hospital fighting for our lives, it is nevertheless true. Those moments that challenge us the most are the ones were we can rise to the occasion and choose to be better, despite the problems of life. We can choose to be grateful, no matter what. We can do this! No matter what your “Addison’s disease” is, you can make it.
I’m a dreamer. I dream big.
Getting used to a new life of disability hasn’t always been easy. Sometimes I choose to do things in spite of my disability, just to prove that I can still do amazing things. I run a food blog. I even wrote a cook book. I’ve set out to share love to the world the same way I share it at home, through food. I do it to prove to the world that miracles happen and dreams really do come true. I might be a little crazy in my feats of strength or the heights of my dreams, and sometimes it lands me in trouble, but I will keep on pushing and keep on fighting because for whatever reason, I am still here. And I feel a sense of great responsibility to have that privilege.
In October 2011, just 1 year after being in the ICU with heart failure, and just 7 months after giving birth, I completed a month-long Ironman to show the world what had happened, and to prove that miracles really happen.
Yes, I believe in miracles. They really do happen.
Wow, you are a amazing woman. I truly understand your story. For I too have a autoimmune disease that’s incurable. I have good days and I have bad days, but I make myself push on. I have 3 children and 4 grandchildren and a wonderful husband that give me support. I am pretty sure I had HG during my pregnancies although back in those days there was no name other than severe morning sickness. My daughter had HG also, she lost a child at 12 weeks into per pregnancy. She became pregnant again and was in and out of the hospital, she was sent home with a nurse and hooked up to a pump. She had lost 25 pounds and counting. She had no strength to care for herself. I had to bath Her and wash Her hair just like I did when she was a baby. Her liver was failing and the baby had to be delivered a month early. She and the baby are doing fine now, , but it was a very scary situation for us.
God Bless you! You conveyed this important message in such a loving, kind, poignant way.
I have been following and enjoying you on YouTube for a while now and just saw this video on my Facebook page. For the record, I never noticed your grey hairs!
It hurts my heart that someone would focus so hard on someone’s physical appearance that they seemingly can’t hear or see the bigger picture. It’s a sad commentary on … well, it’s sad.
Anyway, I wanted to let you know that you have touched my heart. You and your family are in my prayers. I pray God will shower you with His healing and that you will live a long and healthy life. I pray that you will be able to continue to do what you love and that your message will reach others who need to hear they are enough.
Thank you for sharing your story. Love and continued blessings to you and yours. โคโคโค
You are amazing, an inspiration, and a beautiful soul that emanates love and light! God has plans for us, far greater weaved than we could ever imagine. I posted your response about the gray hair because no one should stand in judgment of others. What I learned was far more important. Thank you for your creativity, your love of food, your talents, your curiosity, your generous heart, your faith, your desire to live.
You are an inspiration to everyone! Thanks for sharing your story.
Wow, you are a tremendous inspiration to me and to countless others. God bless you for your fortitude, God bless your Husband and your Children. Oh and by the way, you are gorgeous just the way you are! Love your nose, your straight, chocolate hair and your shape which is not fat! Bless you sweetheart – you’re a Gem!
Like so many others I saw your grey hair clip & found my way here. It’s the little things that strike chords in others that echo around the world. Those of us with chronic illnesses & all the other types of “Addison’s” out there often feel so alone, but we’re like grains of sand on the beach – all connected no matter how far away we are, and all supporting each other even if we don’t know it. Thanks for being a beautiful sand crystal inside & out and sharing a bit of yourself with others!
PS I look forward to trying some of your recipes – I need to change the way I eat to help treat my joint disease & since I love flavour but don’t have much energy for cooking it’s hard to do. Your site will definitely help.
I found your site by way of your video about your grey hair. I struggle every day with self-love, and your story really touched me. Thank you so much for sharing this.
Jesus, thank you, God, for this amazing woman of Faith! God, she is humble and You are using her mightily. May You continue to strengthen her and use her life for Your Glory. In Jesus Name, Amen.
Vulnerability is powerful.
Thank you.
You are an inspiration. I too have Addisons & feel alone as my family doesn’t want to believe it’s real. Thank you for sharing your story.