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.
In our shared difference is the expression our of commonality. Every time I watch your video there are tears. Being marked by difference (whether visible or not) is its own kind of experience. One that is often painful, alienating, diminishing. It hurts. And so when you talk about your jaw, I understand. Not exactly, but as a kid who went completely bald (alopecia universalis) in 9th grade I understand that emotional pain. In the weeks before and after I was diagnosed with Addison’s Disease, people kept telling me how great I looked. I had lost weight and my skin was a lovely bronze color. But, like you, I was dying. I was medically anorexic…just couldn’t eat more than a few bites of food. Could only walk short distances. It was finally found after a reproductive endocrinologist decided to check my thyroid giving my alopecia (and vitiligo). I was positive for Hashimotos’s. A week or so later, we did the stim test for the adrenals and learned that I too had zero cortisol. That was the summer of 1996, the summer between my first and second year of grad school. And, I’m still here. I’ve traveled the world. Only one crisis (and that was on the plane ride back from Australia). I managed it with my sister’s help and by taking extra medication. When I finally made it home I was in bed for the next 2 weeks. To this day, I have a serious fear of getting the “stomach bug” or “food poisoning.” We’ve since added a few more medical things in the intervening 20 years. I don’t think I could do any races or competitions, but I can still do fun things. I just had to learn about pacing and boundaries first. So, in solidarity, I hope to validate that the struggle is real each and every day. My personal goal is to do the best I can knowing that it will be different on any given day. And even then, I’m not always successful. I’m so glad you’ve found this space as an outlet for your passion and creativity, and that you’re sharing with us. I don’t always have the energy to cook, but I’m going to make a point of finding at least 5 dishes on your blog that I will make.
Thank you for sharing your beautiful story. You really touched my heart.
Thanks for that encouragement about the gray hair. I also use your exact words- my husband and I want to just grow old together. At 60, most of my friends color their gray, but I am choosing to see mine as a crown of glory (Proverbs 16:31 A gray head is a crown of glory; It is found in the way of righteousness.)
Your recipes look yummy- thanks for taking the time to inspire us!
All blessings for 2017
That is such a wonderful story, so full of courage. God bless you and your family
I am truly inspired by your daughter of Christ spirit! Thank you for sharing this publicly and allowing others to see purpose in their pain! Thank you for sharing our Lord’s love through your words and actions. You’re absolutely unbelievable and I cannot wait to follow your blog (and I have honestly never cooked anything in my life, but you’re so great that I may just start cooking haha).
Thank you for inspiring me to be more real on my blog and to live in the moment with my readers as well!
I am praying for you and your family! No matter the time you have left on this earth, even just reading through these comments you can see how you’ve affected people for the better!
Thank you again for sharing this. It was simply beautiful.
Sav Stout
Wow. I can not tell you how much you have impressed me! I just “discovered” when I watched your video on the mean comment made to you about dying your hair. You have inspired me! From this moment on, I will be that person! I am a 58-year-old woman with MS. I have been worried far too long on what others think of me and what they think of my appearance. I am a good person who puts others before me. I am a strong person who fight through my illness every day with a smile on my face never letting anyone know how bad it is. From now on I’m going to love myself for the strong brave woman that I am full of scars and flaws and I’m never again going to worry that I’m not good enough In appearance or in any other way. Thank you Rachel! You are making a difference!
Thanks so much for sharing your story in such a vulnerable way, and for pointing to such an awesome God. Your story reminds me of God’s reality, and that His purposes are higher than we can sometimes understand, but that they are always good. Thank you, thank you, and thank you. I love cooking and baking as well, and am really thankful also that you are sharing your culinary passion with the world. I wish you, and your family, the very best. Your gray hair looks stunning by the way!
My cousin shared your “gray hair” video on Facebook and I was impressed. So I decided to look more deeply, finding your blog and this page. I, too, have an autoimmune disease (Type 1 diabetes) and found your public response inspirational. My wish for you is that your life be longer than you anticipate, your case of Addison’s become manageable and less prominent in your thoughts, that every day be filled with the joy of family and other loved ones, and that even more people become aware of your influence and example. Thank you!
Thank you for your story. It’s truly inspiring!! I was diagnosed with rheumatoid arthritis 6 months after my youngest (of 5 children) was born. I couldn’t get out of bed, take care of my family, or really do anything. Fast forward 8 years and, although I still have some symptoms, that “curse” as I called it has turned into a blessing. I exercise daily because I’m so thankful that I can. And I want to take care of my body because it needs all the TLC I can give it! I’m even studying to be a personal trainer/health coach. God is good and I love hearing about how people take their struggles and keep going and share their gifts with others. God bless you and your family.
Thank you for sharing your story, as well as your amazing food blog! You are making a REAL difference in the world in such a good way.. Thank you for being you. Your smile is radiant and your hair is gorgeous, and you are a beautiful, beautiful woman, inside and out. Just stay real, stay who you are — and thank you for sharing who you are with the rest of us!
Wow, this was so incredible to read through! Thank you for sharing the things that God has taught you through this disease. They’re lessons that can apply to all of us, and are really encouraging! God bless you Rachel!