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.
Bless your heart and thank you for sharing your story.
God Bless you Rachel. You are an inspiration. I too have a young daughter and I can only imagine how you manage to take care of yourself and her when you are sick. Keep knowing you make a difference! There is a book I’m reading called ” how many people does it take to make a difference ?” The answer is one ๐ just like you
Hi Rachel, I wanted to comment on not only your recent “Gray Hair” video, but also on your open heartfelt story about your health.
Your video showed up in my feed and I shared it as well. I am 60 years old and have many gray hairs now. I noticed my first one when I was 28 years old and for a while, colored my hair until about 10 years ago, just decided to embrace what God gave me. I suffer from CHF due to a mitral valve prolapse, so I completely understand how that part of your health was. Your story is a true testimonial to the awesome power of miracles! It also teaches us to feel each day is a blessing. Kudos to you on your very positive response. Couldn’t have said anything better!
My daughter is a food blogger as well and she had mentioned that she knows you. I know what she goes through to put together her blog and so I know that you go through a lot as well. You may be staying at home, but you are really working..
Thank you for showing your support of Rachel. I also believe that she goes through a lot taking care of her kids and doing a food blog. I sent her an email and she responded. I don’t want to bother her because I know some days she can’t get out of bed. I’m still so grateful to have perspective thanks to her. I owe so much to her.
I saw your post regarding gray hair, that was shared on facebook. I thought, “I wonder if she has Addisons”? I have Lupus & MS. My skin tone is like yours & 2 doctors have noticed Addisons spots & they believe I’ve had at least a few crises. Perhaps from a messed up immunes system or from long term steroid use. I am having the ACTH Stimulation test done, soon. I fear the results. The past couple of years, I have suffered from steroid rage, if given high doses. Anyways, you are the 1st face of Addisons that I’ve seen, besides JFK, and you inspire & give me hope! Keep it up!!! Thanks for sharing your story!
Robin
I have sarcoidosis and multiple other health problems. I was inspired by your ‘power of positivity’ video, so followed the links to your blog. You are a total inspiration and a very brace lady. Thank you for sharing your story.
Thank you for sharing your story. I have an autoimmune disease called Wegener’s Granulomatosis. It’s been a battle for my life since September 2011. You have my prayers & believe me, I knits you have earned those platinum highlights. I’d say the hate mail intention backfired since I know it has at least brought inspiration to me. Keep your chin up. ?Melanie
I hope you are doing better and thank you for sharing your story. I’m so sorry for what you’ve been through. I am praying for you and your family.
Thank you for sharing. You are an inspiration. All the best for you and your beautiful family. Love from Finland!
Thank you for sharing your powerful testimony! Your story brought me to tears, as I also suffer from an autoimmune disease and other health challenges. It is so hard. How do you keep up the fight on the rough days? Out of my struggle, I also started a blog to minister to others and help them make sense of faith in times of hardship. God is good and can be trusted regardless of our circumstances! Thanks for sharing your story – I shared it with my followers as well. Praying things are well with you and that God continues to show You His faithfulness.
I just saw your response to someone who criticized your grey hair (you have beautiful hair, by the way) and loved it. Then I read about your fight with Addison’s Disease. You have blown me away. I have my own demons and you have inspired me right now, when I am struggling with them. I’m bookmarking your blog (even though I don’t eat sugar). I’m sure there are some recipes that will inspire me. Lots of love to you.
Another visitor from your Facebook viral video.
I wanted to thank you for sharing your personal journey.
Often the world can feel bleak, like things are falling apart and that hope is fading.
To read your story, to see your courage in the face of your struggle gives me hope.
It helps remind me that there are amazing people out there, working to make the world better.
God bless you and your family.