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 honesty and sharing your story. What an inspirational woman you are. Way to go my friend!
Sending you love and healing thoughts! oh, and thank you for your yummy recipes.
Hello Rachel,
You are such a courageous and strong woman.it was my husband who kept pushing me to read and see your website.we are concerned parents of this little man named Lars who was diagnosed with Lupus nephritis in 2011.God was so good we were able to snatch him from death. We thought thebattle was over after 6 years ofmedication Lars was into remission. But that was only for a year. Another test in life came when his lupus became active again.Through constant motivation my son is slowly accepting his challenge. He had been reading and searching for possible answers how to prevent attacks again. He became conscious of his diet and exercises.what i am telling him is how he can cope with stress. This factor we thought why again he had an attack.Thank you for your great food ideas and your inspiring story.
Thank you so much for sharing Rachel! What an unbelievable story you and your little girl are a miracle indeed, and meant to be here. Beautiful. You completed an Ironman just one year later? That is so inspirational!
I am a health care practitioner (and fellow food blogger) and have quite a bit of experience with Addison’s disease, but for an odd reason, my dog has it. I recognized the symptoms of an Addisonian crisis in her 2 years ago and urged the vet to run an ACTH test, sure enough, it was Addison’s. Because we were able to catch it soon enough she survived the crisis and is 100% back to her little pup self, but with daily doses of prednisone and a monthly percorten shot.
I love that you are traveling the world and fully living, the body is an amazing mechanism and I believe in healing on the deepest level. Your adrenals may be shot, but you’ve got about 100 years of life left in you ๐
xxxx,
Abra
Hi Rachel,
Thank you so much for sharing your touching story! You are one strong , smart and beautiful woman, mother, and human being โค
Watching your video and reading your story has really helped me put things into perspective for myself. I struggle with weekly migraines that mean not only a lot of pain but also the fact that I can never 100% fulfill my plans, as the migraines leave me totally unable to do anything when they hit, and I have been building a strong resentment towards them. But what are migraines in comparison to what you and the many people commenting are experiencing..
Like you say, we all have our own Addison’s disease and chronic struggles, and turning inwards / to God wth thankfulness and trying to understand the ‘lesson’ and just letting go is so important. I have figured that I need more discipline in my life which has been so hard to master (despite being so simple for many people), and in trying to avoid the migraine triggers as they lead to so much pain, I am learning to be disciplined as a side effect of managing my migraines. And thus I’m becoming a better person. What a revelation.
Your words really hit a chord and I’ll forever be thankful.
Wishing you all the love and happiness in the world โคโคโค
I’m 38 years old, and was diagnosed with Addison’s Disease when I was 15 – Addison’s diagnoses in young people are really rare – so I’ve been living with it now for 23 years. The story of my illness/diagnoses is a long one so I won’t share here but wanted you to know just how much I can relate to you and your struggles with Addison’s. When my husband and I decided to try for a baby, I wasn’t sure how it would go. Any and all literature from before the 1970’s suggested that women with Addison’s should never get pregnant because the health risks were too “profound”. But when I talked to my endocrinologist she assured me that was crack-pot nonsense and that with proper monitoring, my pregnancy should be perfectly normal. I have 2 boys now and both pregnancies were uneventful, although I needed IV hydro cortisone during labour.
I rarely even think about the fact that I have Addison’s anymore. The first 10 years or so were hard, it’s a huge adjustment. I know that there are things that will be harder for me to do than for other people, but it’s my normal. I don’t think of it as a disability, anymore than my son having to wear glasses is a disability. I can run 10km races, I work out at the gym when I have the time, I walk my older son to/from school every day. I take my meds twice a day, avoid eating any gluten, and I generally feel fine…fine for me, for someone who has Addison’s Disease. I don’t know what “fine” feels like for anyone else.
I go to an Addison’s support group meeting once in a while, but everyone else there is a lot older than me, so I feel a little out of place. So when I read your story, it was so nice to be able to relate to a woman, a mom, someone around my age. Thanks for sharing.
-Jasmyn
I just saw your Grey Hair video and I feel the same way. As a young woman that had difficult pregnancies, not that much different from yours, it took two years to learn that I had Scleroderma (only about 300,000 people have it) plus Lupus. So, I had another 5 years to live after diagnosis! But I would not give up and I’m still kicking 25 years later. And you will be too. God Bless.
Hello Ma’am,
Just a while ago i saw a video in Upworthy.com
I just want to say :
A person is known by the work he or she does : you are doing SUPER AMAZING Work and personally, I see a great teacher in you. I draw a huge amount of inspiration, knowledge and courage from you!! Please keep Shining brighter and brighter!!
Best Regards,
Som
I am so sorry for all that you have, and are, going through. I am grateful that you are doing more than just survive. You are an example of how to live one’s purpose in life & to live positively. I believe that all we do ripples out to others & you are undoubtedly sending out very positive ripples. I do want to point out one thing, though. Insulin is also a hormone that is necessary in order to live. My 18 year old son was diagnosed with Type I Diabetes, which we now know is most likely autoimmune, last June. He depends on the insulin that he injects to survive. I thank God that at least we can be very specific about insulin doses. He has a continuous glucose monitor & will also be able to get an insulin pump this coming June. He is participating in a clinical trial for a drug that helps preserve his remaining beta (insulin producing) cells. He has adjusted to this like a champ & lives very well from day to day. These days, with good care & treatment compliance, the odds of developing complications are reduced by 90 to 95%. We have come a long way. I pray for you & others with Addison’s that they will be able to better identify dosages for cortisol, like they have with insulin, so that you will no longer have to ride the roller coaster. I really do believe in a future where you will be able to grow old with your husband and family. I know you will keep the faith. I, and many others, will keep the faith will you! Thank you for sharing your story. May God send you & your family every blessing.
This is such a beautiful story. Your strength through Christ is so inspiring. I came here because I saw your video on Facebook addressing the hateful comment someone left you about your hair. I am 32 and also have a fair amount of gray hair from thyroid issues. The ageism in our culture is so ridiculous and I commend you for embracing YOU. I hope your video reaches far and wide and that women really think about what they type before they hit submit. Women need to stop tearing each other down. It’s terrible. And anyone else reading this should make a vow right now never to leave a nasty comment. Ever.
WOW! I just read your FB post about your grey hair and was so moved by it. I followed up by reading your battle and win against Addison’s Disease. BRAVO TO YOU! What an example you are. I struggle to find time to take a walk or go for that run and you did an Ironman! Well done and thank you for being an inspiration