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 for your “Grey Hair” video. I have Systemic Sclerosis (Scleroderma). I, too, may die early. In fact, I am currently 15.6 years past my predicted “expiration date”. I, too asked myself now that I have all the plans, loose ends tied, what am I supposed to do now? I am not waiting to die. I am living while I am dying. We all need a reminder to not wallow in the sadness of what we lose but to find joy in whatever we still have. You reminded me of this.
Love your blog, recipes and mostly your lovely spirit. God bless.
Thank you for your words. You are an inspiring person! My husband has a rare cancer that will never be gone. We do what we can do with God’s help. Thank you for the gray hair video. You said what I have explained so many times so perfectly. Blessings my friend.
You have inspired me to help fight my own form of -Addison’s disease. I am debilitated and ready to cave and you cane along and saved me for the day. God has blessed you with a gift to share and to help others.
You are unbelievably inspiring! Last fall I walked away from a successful (and well-paying) job to start my own company. It never occurred to me that it might fail. I am 10 months in and things are not looking great at this point. I’ve been spending a lot of time lately feeling sorry for myself and feeling extremely anxious about my future and then I came upon your story (through the FB video where you talk about your gray hair). You are just what I needed. Thank you so much for sharing your story.
So inspired! Lots of love and prayers!
You know what I saw here? I saw the glory of God. God being glorified in our weakest moments is an incredibly beautiful thing to see. All the focus is on him and what he has done. What a treasure despite its difficulty that you are giving the world about God. I am, by no means, trivializing what you are going through or trying to diminish its hold and how it has affected your daily life. But, what I guess I find incredible is your unwavering trust in His sovereignty. I long to get to that place. Thank you for living a live of worship, in spirit and in truth, to the one true God.
I saw the video regarding the sad comment someone made about your gray hair (which I couldnโt even see until you pointed it out more closely).
I just want to say what a beautiful and amazing person you are for the way you handle the negativity. So many in the world could really learn from your humility, humbleness, kindness and sincere appreciation for life.
Godspeed and best to you and your family. Keep on freakin and doin!
-Brian
Louisville, KY
I love your food page and your inspiring story Rachel and thank you for all your wonderful work.
Health,peace & happiness be with you always
~Craig~
PS:
My girlfriend and I also thank you for making me look good in the kitchen..?
~Craig~
I, too, believe in miracles, and I am also living proof of it. I was diagnosed with hydrocephalus (water on the brain) when I was three months old (in 1967). Back then, the life expectancy was no more than five years; I celebrated my 52 birthday last week (May 21)
In `967, my parents were told that if I live, I would most likely be mentally handicapped, blind, crippled, etc. The doctors told my parents to not ever expect me to do any more than I was doing at that time.
Over the years, I have had brain surgery 12 times. I, too, had a facial deformity and had major jaw surgery in 1985 (the summer I graduated from high school).I havve suffered the bullying (just as you have).
As I’ve said, I’m now 52, I’ve been married for 30 years (even after slipping into a coma on my wedding night, and having emergency brain surgery within 24 hours of marriage. We have two beautiful healthy daughters (almost 20 and 17). The oldest is preparing for graduate school, and the other will graduate from high school this weekend.
I, too, have learned to celebrate every day. , too, have pushed the limits, and I tell everyone who will listen of God’s goodness.
God is good, and I also believe in miracles.
I’m praying for you.
Thank you for sharing your inspirational story. You have touched people’s hearts.
I saw your video regarding grey hair and your autoimmune disorder. My wonderful husband had primary addisons due to another autoimmune disorder. Please take any new symptoms seriously and donโt accept That your tests show normal levels if something feels off. Please take care of any cut or scrape Infection is not easy with Addisons as Iโm sure you know. My best wishes are with you and your family.