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.
It’s amazing how many people commented they have Addison’s since it’s so “rare.” I just wonder if this is yet another disease that’s more common than we think but just under-diagnosed by doctors not willing to look outside the box? I, too, have been dealing with an auto immune condition, Hashimotos, and all it entails. I have days I barely function and days I feel somewhat normal but rarely ever a day that I feel “well.” But your story has shown me there is always hope and that my situation is certainly not the worst out there. God bless you and ROCK that gray hair, girlfriend! I, personally, choose to cover mine with red, blond and black “stripes” (as one little boy called them) but when that no longer works in chopping it off to an inch long and going totally white (probably pretty soon at 62 years old)
It’s about 1 in 100,000. Many people with Addison’s have reached out to me just because it’s the first time they’ve come across someone with Addison’s disease. The community aspect is why you see so many mentioning they have it as well.
Rachel,
I listened to your post on Facebook today and was as dumbfounded by what you experienced as I am in awe of your incredible story. I’m so grateful for your willingness to post it because now I found YOU! I’m thankful to be able share your story with my sister who has a rare bleeding condition, not even found in the literature and with my 16 year old daughter who was diagnosed this last year with Selective IgA Deficiency and Common Variable Immune Deficiency. After 5 miscarriages, she was my miracle given by God at age 44, a year after the doctors told me to “just go travel with my husband because even in the fertility clinic, no one get pregnant after age 43.”
You and your beautiful daughter are indeed a miracle! Though I am so happy to explore your cooking recipes, nothing compares to the message of hope, love and graciousness you share.
Wow! Bless you for sharing your story and faith. I recently saw the video you did with upworthy. So great!
I happened upon your blog after seeing your video about the nasty comment you get. When you mentioned auto-immune disease, I had to know more. I landed here and I am glad I did. I’m 24 and also disabled. I’m very, very sick. I have EDS (Ehlers Danlos Syndrome) and Lyme disease. I was an addicted for 5 years after being treated with and then taken off pain pills (I then went into withdrawal, bought my own, etc). God saved me too- I prayed, 2 days later I found out I was pregnant, and stopped using. The pregnancy was the worst 9 months of my life, but my little boy is so worth it. God’s answer to my prayer didn’t just save my life but my soul. I came to Jesus and my faith in Him is what has sustained me through my illnesses. Every single hour of every day is a struggle, but God has provided me with a child that gives me motivation to get up and around each day, though I desperately want to stay in bed from the pain. If I wasn’t a mother, I would have ended my life years ago. But God knew what I needed. He provided a miracle.
I’ve been in a pit lately. Thinking “how can i go on and live life feeling like this?” But reading your story has given me the encouragement that I need- even just for today. The fact that you continue to chase your dreams and conquer your hurdles is amazing and inspiring. Thank you for sharing your story, and I pray that God continues to bless you and uses your voice for good.
I just saw your video and wanted to thank you for posting it. You are a Beautiful women and clearly a beautiful person. I hope your message spreads far and wide so that all people can “be that person” Sending you love and hoping the love of God permeates through your message! <3
Thanks so much for sharing this. It’s just the inspiration I needed today. My husband suffers from chronic illness with no known cause. You are so right. In these moments, we have a choice to lean into the Lord or give up hope. Thanks for reminding me which is the best choice. Miracles do happen. We are trusting God to heal my husband in His perfect timing. Blessings to you and your family!
Rachel, Why did it take so long for them to diagnose the disease? Are you in a small rural area that doesn’t see much of this disease?
It’s an incredibly difficult disease to diagnose, and even more difficult to diagnose during pregnancy. It’s also rare and the majority of doctors have never diagnosed it.
YOU are amazeballs. I just saw your gray hair video on facebook and came here to read more about you. Thank you for sharing your story and don’t ever give up!!! Way to go!
Your video and comments about your life with an autoimmune disease and your grey hair, is inspiring. May you be a blessing…God does do miracles, sometimes in different ways than we expect.
Just discovered your site and love your recipes. I was diagnosed with Addison’s in 1990. I was fortunate to have a doctor who diagnosed it right away. I live on the West Coast of Canada and meet with a support group not too far from home. Glad to hear you are doing well. When I was diagnosed my doc told me about John Kennedy – I sometimes think that if he had run for office in a info loaded world like today, his health would have been an issue.