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.
Lots of love to you. In 2013 I had a tumor on my pituitary gland and required surgery. Then a second surgery to remove my pituitary gland because a regrowth of a larger tumor. So in 3 ‘months I had two brain surgerys. In 2009 I had an adrenal crisis (Addisons disease) and had cardiac arrest. Somehow after 20 minutes of cpr ems was able to get my heart started and flew me to a trauma center. As they landed my heart stopped again. They told my husband and 9 year old son to say their goodbyes because there is no coming back from that. My husband begged and pleaded to god, the doctors and anyone who would listen. The next morning I had another cardiac arrest. Luckily my heart was restarted and 2 days later I was taken off the ventilator. I received a pacemaker and was in the hospital for 7 days. I have since gone to nursing school and continue to try to leave my mark. Lately I’ve struggled with the fact that my hydrocortisone (cortisol) makes me heavier than I like. And there are days it takes my whole will power to get out of bed. I work as an emergency room RN and I love my job. My boy is nearly 17 and busier then ever but I don’t miss a football game or a wrestling match. Addisons is something I’ve struggled with for over a century. I wish there was a cure. Today is my 38th birthday and I realize just how lucky I am. The struggle is so real and so raw. Whenever I’m criticized for my weight or the way my voice sounds when I laugh or my total love of all things disney I just remind myself that god saved me. I admire you’re strength and all that you do!!!!! ???
I’m sorry that pituitary tumor was 2003
Hi,
I am curious why you decided to have your pituitary gland tumors removed?
I have one also, but have left it alone. I have heard it growing bigger and coming back as happened to you.
I am now on disability from it as l have adult growth hormone deficiency compliments my tumor.
Hope you are feeling great now!
Susanne
I recently saw your video on Grey hair! Which prompted me to check your page out a little more. Ive been living with a chronic illness, Multiple Sclerosis, for almost 12 years. I recently underwent HSCT, a stem cell transplant which includes chemotherapy, more commonly used for leukemia or lymphoma. I believe in miracles and I believe you are one! My dog has Addisons disease as well. Daily pred and monthly injections. I want to become a mom soon too. Your story brightened my day. I truly believe in miracles.
Thanks for the amazing story! I too have Addisons (you wouldn’t know it from all your comments, but it’s really rare…1:100,000… you are getting famous in our circles! I was thinking about your long survival in crisis, and it occurred to me that your baby saved you! Her little adrenals were responding to your high ACTH and keeping you both alive! โคโคโค
Love your comments!! Bless you too!
Wow! I saw your recent FB video that a friend of mine had shared and loved it. Having a rare immune system disorder myself I wanted to know what you had. I needed to read this today, I can relate in so many ways and have some grays I refuse to dye because meds have made my hair so fragile. Also I want to recognize myself as I age. Thank you for sharing! God bless!
Thank you so much for sharing your story. I have Addison’s too and feel like a walking miracle having lived through a sodium level of 99 and subsequent coma! I also have type 1 diabetes and hypothyroidism. Your story made me cry, especially where you talk about the illness helping us become who God wants us to be. I’ll admit I sometimes feel bitter and ask, why me? Reading your story really helped. God bless you! You are a truly beautiful person.
You are truly inspiring! Having multiple auto immune myself I understand. May God bless you and keep youโก Half the battle is finding the right doctors. I am still working non that part. Your beautiful!
I have Addison’s disease too. i am concerned that your treatment is not at all optimal if you keep ending up in hospital. I would highly recommend going to and/or contacting Dusty Hardman. She has Addison’s and is an ultrarunner. http://www.addisonssupport.com/
I’m well aware of Dusty. I actually have my disease very much under control and haven’t been in a hospital in years. I appreciate your concern.
HI Rachel. I just read your response to the nasty comments about your grey hair. There are some mean people in the world but you were magnificent in your reply. I followed the links to your blog to read more about you. You have been chosen to witness in a truly compelling way. I hope I can be as brave as you have been if I am ever called on as well. I believe in miracles. We have had some in our family too. God bless you.
Hi Rachel,
I saw your youtube about the ‘grey hair’ thing and the way you said ‘just a suggestion’ made me wish I could know you in person. Thanks for the positive reminder that none of us has time to be personally critical. And who knows, if you can beat the odds of an Addison Crisis during pregnancy, maybe you’ll also be standing in front of an amazed doctor at age seventy-one…silver highlights and all.
I’m an atheist, but whether there’s a god or not (and I don’t criticize your faith), none of us stays on earth forever in this form. Thank you again for the reminder to make our time here worthwhile.
Love and hugs to you and your family. You rock.
Jennifer
Yellowknife, Northwest Territories
Canada
I also watched the video in grey hair and that is what brought me to your blog. Thanks for being vulnerable in front of the great big world. Your story is obviously about more than grey hair but
Isn’t it interestinG how that simple choice stands out? I also “let” my hair do what it wanted this year and I am almost all grey (I am 48) — I can’t believe what a reaction this has caused. I have had the most positive comments from women in their twenties though and I think it is because they want someone to not be afraid of aging…to not hide and to say “it’s ok, in fact it is good!” To be honest I am probably the one who has struggled the most as I get used to this me ๐ thanks for sparking the conversation about this and so much more.
WOW! I too have Addison’s, love food and went through a difficult pregnancy! Some of what you wrote I could have written about myself! You are an inspiration! I’ll be following you; your food looks delicious! ((((HUGS))))