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 have watched your videos for years and I am just finding out about your addisonโs disease diagnosis. I too was diagnosed with addisonโs disease at 11 years old and Iโm now 41. I was sick for months, unable to walk more than 10 steps without everything going black and on my death bed in an ICU my doctor figured it out. Several hours after being given IV corticosteroids I was up dancing and begging to eat.
I know you have had some major hurdles in your health, but the positivity you approach life is absolutely inspirational. Thank you!!!
Hi Rachel – I don’t follow you because of your cooking but because of your health. You inspire me by your determination and not giving up. My heart is sad that you wonโt be able to make the trip to Chicago that you so weโre looking forward to. My prayers go out to you. Iโve prayed and will continue to pray to our Lord that a cure be found for your illness. ๐๐
Praying for you.
Think of you often. Admire you tremendously. Sending love hugs and prayers. ๐
Rachel, I just love you! This is the first I am reading this, and I just learned about the brain tumor, too. It is Thanksgiving, and I am home scrolling the Internet because I am sick and couldn’t join my family. It’s Mom’s 91st birthday today, too. I was really sad about today, but I realized reading all of this, I am very lucky. Thanks for your inspiration, and the great recipes, too!
Rachel, Wow, I was wondering what happened to you. I’m happy you are staying positive and forging forward. You have a great company of fanfare who truly care.
Please keep abreast.
Sending warm thoughts and many prayers from Kansas.
Dear Rachael; you have such a wonderful attitude. I have been wondering how you have been feeling. I keep you in my prayers. For some reason you have been given so much to contend with. When this happens I ask the good Lord why and get no answers. It’s beyond me. I hope for many good days for you and his help.
Stay with the cooking as long as you can. You are the best.
Connie
Dear Rachel,
Thank you for your TV shows, utube videos, and cookbooks. I appreciate all that you do and I am glad that you surived and gave birth to a beautiful healthy girl. You are an inspiration to me. I gain hope and comfort reading your biography. I have a plethora of rare autoimmune diseases also with no cure and disabling symptoms, reading your life story of how you overcame everything with your positive attitude and determination made me think I could to that too. I am thankful for the internet, that is how I found you. The technology helps me live vicariously. I can still learn even if my health prevents me from sitting in a classroom. I can still reach out to others through email. You gave me hope so I wouldn’t give up. I realize that I am not the only one with rare auto immune challeges. I feel understood and valued because you showed me that it’s still possible to be loved have a family and have quality of life. I am so glad that I found you, you changed my thinking about chronic illness. I also want to say your recipes turn out great every time and are easy to follow. Thank you Rachel. I hope your health improves and there are new medical advances so you can be cured and live well into your 90’s. I appreciate you and all that you have done more than words can show. By being you, you taught me how to cope with my auto immune diseases. Thank you with all of my heart Rachel!
Rachel,
I really enjoy your recipes! Iโm so glad you feel somewhat better. Iโm so sorry youโve had health problems.
Sincerely,
Jim Aust
I am inspired by you. I am also a stay at home chef and tried your recipes and every one, was spot on! I came to feel some how connected to you and care very much about your health . โค๏ธ