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.
Thank you so very much for sharing. I just watched your video responding to the gray hair comment from a viewer and now I’ve read your personal account on dealing with Addisons. You are truly inspirational (way cooler than JFK). You have an incredibly refreshing perspective on life and what truly matters and I thank you for speaking out. I am a fertility and recurrent miscarriage specialist and I see miracles too.
Thank you for your bravery, your strengths, and your willingness to share.
Your story and message resonates with me and I will strive to be that person that ‘builds people up!’
You have an amazing story…and testimony!
I, too, have an autoimmune disease – dermatomyositis. It affects my skin and connective tissues, and I, too, almost died a couple of times. I was the public relations director for a medical center who sponsored a Go Red for Women luncheon during February’s heart month. At that luncheon, I had a heart attack. I later found out that my autoimmune disease caused my adrenal glands to go into hyper mode…shooting adrenaline to my heart. My heart blew up and I’m glad God stopped it from exploding so that I could tell my story to women’s groups and at the hospital’s Go Red for Women luncheon the next year!! God has a plan…we sometimes don’t like it, but His will is done. Bless you in your journey.
You are an inspiration not only to those you shared your story with but your children. I suffered from Hyperemesis Gravidurum as well and had a Pic line. I can appreciate that difficult time only from HG and to know you had so many other challenges going on is amazing – you are a survivor! Thank you for sharing your story and encouraging not only women but men to be tolerant of our imperfections and to embrace our beauty as we are. As a at home chef, I look forward to following your recipes in the coming months.
I think you are perfect on the outside and even more beautiful on the inside. It is sad how much of our lives (and peace) we waste critiquing our looks and that it can take facing the loss of life to reshape our thinking. As the mother of someone with 2 awful auto-immune diseases, I say a prayer for you and your family. And, will start following your recipes even though I prefer someone else cook them. ? Hugs
Hey there. I found your website from seeing your video on your hair. 1st of all, I think your hair is fabulous. 2nd of all, it surprises me how bold people are when they can sit behind their computer screen.
I have so many autoimmune diseases (lupus, Sjorgens Syndrome, Raynaund’s, Graves…just to name a few). I was diagnosed just over 10 years ago at age 25, right after going through a horrendous pregnancy, premature birth, & my son having a NICU stay.
There are days that I can act like nothing is wrong. There are days that I can’t hide the pain. And there are days that I am stuck in the bed & even showering isn’t an option. There are also days that my husband gets so angry with me because of my limitations… actually, he’s mad at the diseases & situation.
Thank you for ‘putting it all out there’. Thank you for not apologizing for what you can’t control. Thank you for giving words to how I feel on a regular basis. You are truly an inspiration.
Incredible story. I truly feel inspired to push past the bits of me that limit me… or rather… that I THINK limit me. Woah, Look at that, you changed that sentence for me already…
The person who commented on your gray hair obviously doesn’t know that gray is the new blonde. One of the young women I work with goes to a lot of expense to deliberately dye her hair gray. So your detractor is obviously out of touch with reality.
I saw you fb video. God bless you and your family! Keep being brave and keep fighting. You are achieving great things.
Dear Rachel, you are an inspiration and your life a gift. Thank you for sharing your experience. May God bless you and your work a thousandfold. With gratitude,
Dori
You are amazing! Thank you for sharing your story. I came upon you on FB sharing a recipe. Keep doing what you are doing.