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 also found my way here after seeing your video on Upworthy about your lovely, alive gray hair. I wanted to let you know my brother just turned 59 and he has had non-functioning adrenals since he was 14 due to a pituitary tumor removal. This secondary Addison’s has been controlled with corticosteroids and only recently did he begin osteomalacia medication to his regimen. I hope this gives you hope for aging gracefully for years to come.
Rachael, what a good story, I too have Addison’s Disease and came close to dying also. I started feeling sick to my stomach, and over a three week period lost 18 pounds cause I would be so weak and sick. They discovered I have Addison’s also and onset of Diabetes was another issue. I too have Hypertrophic Cardiomyopathy, which is another miracle I am alive as well. I’m 43 and have the same inspirations and wonder every day why I’m alive and what God’s next plans are I’m a fighter and feel mentally I can fight anything stay strong and keep the sport of The Lord with u at all times. Brandy
HI Rachel; I am one more new fan following your gray hair video–my comment to the friend who shared it is that you seem wiser at 31 than I am at 54! Go girl!! Well, now that I am here I see you have many excellent recipes.
You are an inspiration. Your strength and optimism and resilience are incredible. Now I can’t wait to read your recipes too. Rock the gray hair. You ARE beautiful!
You story really touched my heart. You have such a courageous spirit and I think God will continue to use you in a special way. His plans will be fulfilled in your life despite this condition. Your message is what all women need to hear! Natural is beautiful with all it imperfections! Thanks so much for sharing your story!
You are simply amazing! I wish I could share my story the way that you do: with so much hope and inspiration!
<3
Thank you for sharing!
I saw your FB video this morning and shared it right away on my page. What a beautiful clear strong message you have sent. we have to stop being so critical of each other ( the media tells us we have to panic over every wrinkle, grey hair, discoloration, extra ounce of fat) and learn to love ourselves. I LOVE that you said that in your sweet calm voice I know that is true. Well done for opening all our eyes again. There should be a movement where everyone says they Love themselves with all their uniqueness. Would make life more real. I hope for you and your family some advances in Addision’s treatment soon so you have a wonderful long time together.
Saw your video on a shard post from a friend and decided to check out your blog. You Rock!! As a 36yo dealing with my own set of autoimmune, it’/ inspirational seeing others kicking butt….thank you for that….
You are such an amazing person. What a blessing you are to your family and to this world. Thank you for sharing this story and for the recent facebook post. I can’t wait to try some of your delicious recipes!
Rachel. I am thanking the Lord for YOU today! Thank you for sharing your story! I was diagnosed with Addison’s in 2009, after a long period of declining health that baffled doctors and broke my spirit. So glad you were diagnosed in time to LIVE and to have that precious baby girl! Praise God! Just wanted to say that my road back to health (and by that I mean having reliable energy) was long and slow – it took my body over FIVE YEARS to recover and really feel well again – and I had not experienced themedical crisis you did. At 56, I am just now returning to work as an Occupational Therapist, and it feels good to feel good again!. So take good care of yourself (listen to your body), be patient, and keep up the good work! I am praying for you and pulling for you! (And thinking of letting my hair go gray…)