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.
Hi Rachel
I know how you feel. I was 21 when I was diagnosed with PSC and in remission for 10 years. My second pregnancy brought back my autoimmune disease back and it was much worst. I had two surgerys during my prenancy. My doctors tell me they will try to get me past my 50’s, there is no cure just a medical treatment every 8 months. I saw your video about your grey hairs. I understand exactly how you feel. People take living for granted and what I would not do to spend more time with my family. Know that there are a lot of people who support and understand you. I would love to hear from you and keep in touch. I feel we are connected because of our experiences.
Much love
Arvind.
I also have a rare (7 in 100,000) autoimmune disease which has changed my lifestyle and my perspective on life. What an incredible inspiration you are. A true fighter showing the best of humanity.
I happened across your story by seeing the video you made in response to the troll who shamed you for your gray hair. I instantly liked you and started checking out your blog when I found your story. It happened to all be exactly what I needed today. I have autoimmune issues as well, I’ve had problems my whole life.. The Drs aren’t 100% sure what exactly my issues are but it’s led to years of joint pain/deterioration and recently a lot of kidney issues. My pregnancies/deliveries were also quite interesting. My latest and final pregnancy nearly killed us both. But I just had my 4th surgery last week (and am seeing a dr today because of an infection from surgery) so far this year. I’m tired. I’m fristrated. And your message really spoke to me and encouraged me. Thank you! Thank you for sharing and for being a wonderful example of God’s love and grace. Stay strong!
Have you heard of the AIP diet? I am sure you have being a chef. I have found it does an amazing job of keeping my antibodies under control and preventing further damage. You are amazing to have survived and beaten the odds <3
I don’t have Addisons, but another autoimmune Ankylosing Spondylitis and antiphosolipid syndrom. I love your story on facebook. I just turned 30 and have my share of Gray hairs and teeth problems. I was diagnosed when I was 11 and have been struggling with it for a long time, then at 15 I was diagnosed with a pediatric cancer and suffer from the effects of both 15-20 years later. It’s amazing talking about your disability so openly! I am so amazed how you have continued on and shown such strength.
Just daw this post, a repost from George Takai, you are a fricken amazing person, grey hairs and all!! And an inspiration of living in the moment!! Thank you!
Keep going. Everyday is another day closer to improved treatment regimes. I was in a similar situation for 6 years. It was crushing not to be able to do more things with my daughter. I was finally diagnosed with an autoimmune disorder, got some treatment and now I work full time as a single mother.
We’re up and standing (most days) and you never know what new research could pop up at any time. It’s important that we stay focused on what we can do, and make the best of the time we’re given.
Blessings,
Terri
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I loved your chocolate cake and cookie shots.. can’t wait to try your brownies and white cake! Girl, I was a fan way before i read your story! You rock! I love that you are a Christian and love the stuff you make… and I’m a vegetarian! Looking forward to your next recipe!
Hi!
I just saw the video about your “gray hair” in facebook and was immediately interested in your story. As you said each of us carry our own problems, diseases, struggles… but seeing how you have managed yours, it has made me see my problems as really nothing at all. I am sure I will always struggle with weight problems, financial problems, etc…like a lot of other people, but I am very grateful for life and for my family.
Thank you for sharing your story. I am sure you have touched plenty of hearts.
hugs from the centre of the world (Ecuador)
Ximena