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.
I am retired from my nursing career for the last 40 some years and love to cook and bake and follow you as often as i can see you. I think you are a brave woman and was so put back that you have gone through so much and how you are so great with your recipes and blogs. you are always smiling a lot when you are doing your recipes on line and i admire you.
I do have a question about your recipe for the most amazing chocolate cake – is it dutch chocolate cocoa powder or the lighter unsweetened cocoa powder. In your picture it shows a rather dark cake. Just wondering.
And again i read online this phrase: Simple Ordinary and Joyful… written by a woman who had depression at times.
What an amazing story!! You’re so strong and so amazing!!! The true story of a fighting miracle! Bless you and keep fighting and keep cooking! ??
Thank you for your amazing story, and for being just who God wants you to be! I am so thankful that I stumbled across your recipes! I have saved several to try soon! May God bless and keep you…
Thank you for telling your story. It is great that you are spreading knowledge about this poorly know & undertood condition. I went into adrenal crisis โout of the blueโ last spring, thankfully the doctor at the hospital did the cortisol stimulation test & with undetectable cortisol levels was able to diagnose me within 48hrs. It mustโve been so hard & frustrating for you to not get the help you needed for so long. Iโm so glad you lived to tell about it.
For me too it was a transformational event: looking at death in the face does that. It makes everything so clear: whatโs important & what isnโt.
Stay healthy & keep doing what youโre doing. Youโre making this world a better place.
Rachel, thank you for telling your story. I think you are a beautiful woman and an inspiration to all! My daughter has an auto immune disease. She has psoriatic arthritis. I enjoy your recipes. I too, believe God makes miracles happen. I hope you have a very long and happy life.
My mom has Crohn’s disease, also an aggressive Auto immune disease. She has taught me everything I know about courage, bravery and what really matters. Wear your greys with pride. You have been in the darkest if places and truly appreciate the light. Thank you infinitely for sharing.
Like so many others, I found my way to your blog after seeing your video on Facebook. I just wanted to take a moment to say that you are amazing, strong, and an inspiration to others. You’re doing great things and sharing your message with the world (and incredible cooking!) is impacting people in so many positive ways.
Thank you so much for sharing your story. I too have a rare autoimmune disease called Mixed Connective Tissue Disease (MCTD) it has brought on a number of other illnessess including Interstitial Lung disease (ILD) I’m an now oxygen dependant. I am only 35. My illness started during my pregnancy as well and I too suffered from HG. I said all that to say…your story was inspiring and as I read it I said what if this is what God wants me to do…share my story?! I have been asked to speak to some nursing students at Mayo Clinic and I’m excited and nervous…it’s a rare disease but maybe if more people hear about it a cure can be found. Thank you again for sharing your story.
You are pretty inspiring yourself! Please keep staying strong and Don’t Ever Give Up.
Inspiring, thank you and just keep doing what you do. God bless your family.
Thank you so MUCH for sharing your story! I think God has left you here for a purpose and that purpose may be as simple as witnessing HIS works in you and allowing us to see your strength through your trials and battles. I needed to read this. It has given me hope! I, too, am suffering with an auto immune mystery. Going through diagnosis is long and grueling. You find a point to where you aren’t afraid of the diagnosis anymore, you just wanna know so you can begin treatments to feel “normal” again. I wish you well in your journey. You are a light to so many. Thank you!! And God bless you.