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.
My 5 year old nephew was diagnosed with Addison’s almost 2 years ago. He is an amazing little person with a very tough disease to live with. Thank you for spreading information about it. I just pray for some sort of permanent solution for those with Addisons. God bless.
You are amazing!!! I have Addison’s disease too. I was diagnosed when I was 18 after a year long illness and unexplained 30lb weight lost, constant vomiting and fatigue. Now, I have two beautiful girls, age 3 and 1, and I’m running a marathon next month, because, like you said, “I do it to prove to the world that miracles happen and dreams really do come true.”
So many people surviving autoimmune issues. I feel fortunate that the four I have do not interfere greatly with my life, but I am always watchful for more. Bless you all.
I’m a lupus warrior! I’ve had so many well meaning ppl tell me if I’d have enough faith God would heal me. But I believe that faith comes when you have faith that God has you in your circumstances and has blessed you because you’ve remained faithful regardless. Keep fighting and I’ll be praying for you! God Bless!
I appreciate your story so much. I Came here to visit after I watched uour video on gray hairs. Thank you for your story and thank you for being you. I will be thinking of you and pray for you and your family. XO
Dealing with any autoimmune disease is difficult. I have 5 and I cant let them define me or my life. I am tired of people making snide remarks like “You must enjoy ill health>” How cruel to say that to anyone You have medications that will help you live a better life. You have a husband and family who are happy that kow you will take care of them as much as they take care of you.
After 35 years of marriage I am now alone. My husband was mad that I was sick and was doing his best to make it worse. In the end he destroyed our entire family, not just me. He will have to live with that.
We can only do what we are able. There is so much more I want to be able to do and so many I would rather be helping. For whatever reason God decided that I needed to see the other side. I have come close to death a few times, including after my daughter’s birth and after a major surgery. I am still alive. We are survivors.
Keep on being the bright center of your family. You are beautiful.
You are an inspiration. Your story is incredible.
Thank you for sharing your story. I was diagnosed with Cushing’s Disease [the opposite of Addison’s- I produced too much cortisol] in 1995 while in college. It was a long road to that diagnosis and a long road to recovery. I had to undergo fertility treatments to have my kids. I also had hyperemesis. What an amazing story/miracle you are living!
I hope you realize you are a miracle and have given hope to people. Life is beautiful especially when there are people like you to remind us! I hope you continue to stay upbeat and positive. Your kids are lucky to have you as a mom!
Hi, Rachel. Thank you for sharing your story. I also have Addison’s Disease. As tough as Addison’s is, it has made me more grateful for every morning I am able to wake up and enjoy my life.
Dear Rachel,
Thank you very much for sharing your story. You and so many peolpe that replied here are really great! I appreciate a lot how you live and how you face all what you experience. I can learn a lot from you! I thank God everyday for every second of my life, for everything! For founding you!
God bless you! Stau strong! I wih you as much as possible great moments and lots love to you and your family!