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.
Rachel,
A friend shared your post on FB about the grey hair comment someone sent you. Why would anyone waste the time or go out of the way to put someone down? What a waste of energy. Your value for life & your response are wonderfulโand powerful. Never change, Rachel. Stay positive because the body follows the mind.
Rachel, I just found you today, immediately went to the market to get everything needed to make your amazing lasagna.
Decided to see more of your videos & saw the one where you explained why you won’t color your hair. You are an incredible woman of beauty, strength & courage. May you continue to stay well & show us how to make your wonderful recipes.
I really appreciate getting to see you on you tube.
You make the recipes so simple. You explain everything
so clear. You really do a good job.
Also, I really appreciated your story. My husband and I
will pray that you stay healthy and get better and better
all the time. We believe in miracles too.
You are awesome and I love to watch and learn from you! Thank you!! โค๏ธ?
I love your grey hairs, I came across the video where you talk about them. My prayer for all little girls, (grown up or not) is that they realize they are enough. It took me way too long to embrace me, but with God’s help and the love of my husband most days I remember this. 8 years ago my 29 year old son passed from undiagnosed heart failure, then 3 years ago I was diagnosed with breast cancer. By God’s grace and the support and love from family and friends I have survived both. When my hair started growing back I decided to stop dying my hair, which I had been doing since my 20’s, I was pleasantly surprised at my natural color. ๐ Praying you have more good than bad days. And thank you for being brave and putting yourself out there. I am off now to check out some of your food! God Bless you and yours.
I just saw your video about the gray hair comment on Facebook so I wanted to look you up. My daughter has 8 different diseases 5 of which are autoimmune so I wanted to see what you were struggling with. Turns out you and I are exact opposites. I have adrenal source Cushing’s syndrome ssf o my adrenals produce too much much cortisol and yours, not enough. My daughter is also adrenal insufficient so we’ve had numerous steroid crashes. Always hydrate a ton if you catch a cold. My daughter has ended up septic 3 times from a common cold!
You’re absolutely right about the grace of God helping you with this life you’ve been given. It’s not easy but His grace is sufficient and He bbn promises that He will never leave us or forsake us. I’m looking forward to seeing what your cooking is all about. God bless you and praying for you to stay healthy.
Thank you for sharing your story. God bless you and your beautiful family as you live your life with faith, love and determination. You are truly a blessing and an inspiration! You’ve got this!
I think I have Addisonโs after struggling for years. Iโm 62, and pray I donโt go into an Addisonian crisis. You have touched me so much! And now there is the added bonus of having my husband (I can no longer cook) try your recipies !
Thank you for sharing your Inspirational story. We never know what another is going thru in their life. I have a couple of family members who have auto immune disorders. . . Not Addisons . . . And they do play such havoc on your body. One of our dogs was (finally) diagnosed with Addisons about 3 years ago. The daily pills (she takes 3 a day too) and monthly shot and regular blood tests are what keeps her alive and with us. I had never heard of it until then. Thank you for your blog and sharing with us. You are amazing. You are a miracle. โค๏ธ
Thank you for sharing your story and your faith. God is always good, in the hills or in the valley’s. Praying for your continued strength!
Although I donโt have Addisons my life since the age of five has been like yours. At one point I was told by a dentist by the time I was 25 Iโd have lost al my teeth, I was also told by a doctor Iโd be lucky to see thirty. At 63 Iโm still kicking. The side effects of my meds are hard on me but are better than the alternative. There is one side effect thatโs a plus is a full head of mostly non gray hair. You like me have beat the odds, I donโ think Iโll see 70 but I wouldnโt be surprised if I saw 80 either should you.