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.
Thanks for sharing your story, I got to it through the post about graying hair, I have a terminal form of cancer which I have been battling for 2 1/2 years. I thank God for every eztra day I have. I have learned so much through this, and have so much to be grreatful for, including an amazing support system and great doctors. It truly is in God’s hands. I just turned 62. I am a fabric artist and quilter, I am blessed to spend my time making gifts for others, it brings me such joy, just as your cooking does for you. I wish you well in your journey, I am sure your sharing is also a blessing to others.
Thank you so much for sharing. You have helped others with their problems. Thanks again.
I hope you are doing well, I am praying for you!
Thank you. โค๏ธ
Hi!
I have been following your recipes for so many days now and I had no idea about you being a fighter! I suffer from another autoimmune disease type 1 diabetes, where I don’t produce insulin and I need to inject it multiple times a day, in order to live.
Most of our everyday struggles are very similar and it give me hope that I am gonna turn out okay and have my own family and career soon.
Thank you!
Palak
Hi I am 15 years old and over the course of last year I had two brain surgeries, 5 spinal taps, lost my hair 4 times, have had hundreds of ivโs, eventually got a PICC line and then a power port, have gone through two rounds of radiation, am about to start chemo for the second time ( this time it will be about two years long.) Iโve been sent to UCLA and to st Judeโs (which is in Tennessee) And I donโt wish anything was different. I have become so much stronger and my best friend stuck with me through everything, they even stayed with me after my last surgery until I went home. And my family and schools have been so supportive. Iโve learned that life will be hard sometimes but everything happens for a reason so you just have to trust god and fight like youโve never fought before.
I believe also that you have to fight everyday. Your message is so positive and wonderful. I’m proud of you and truly hope you will continue to be so strong. You are a miracle and an example of what is possible if you never give up!
Yes, miracles do happen! YOU yourself are a miracle. Youโre a star! โค๏ธ
My hair went from dark brown to completely white in 18 months because of medication for chronic form of cancer. I’m surviving cancer, but I look 20 years older. I’m not a fan of white (not gray) hair, but dyeing seems denying who I am.
As far as the hurtful comments, it’s just jealosy at your success. Haters gotta hate. They are lisers who are unhappy, so thay want to share their misery.
Good luck in the future. Hard to believe it took the docs so long to find the solution.
Your story is beautiful and so are you! I believe in miracles too. How can I not, right, you are one. I am one. We are all miracles already. And, we also get additional miraculous magnificent glorious blessings bestowed upon us every day. The fact that we are still here standing beyond our challenges. We are resilient. We are courageous. Thank you for sharing! God Bless you & your family.
Rachel – Your story is such an inspiration. I have no illnesses, but my husband and both of my precious children have an Autoimmune Illness. I think the worst day was the day I stood in the Naval Hospital in San Diego and held my son while he begged God not to take his dream from him. It was worse than when I stood at his bedside and he was in a coma, on a respirator, and I waited for word that he would live. Then there came the day when he became a true man, and he grabbed my hand, and with tears in his eyes he promised me that he would be okay. He had to be, because even though he hated the illness, the surgery that left his body in devestation, the situation, he knew that God would give him wisdom and put him in places that he could help others with similar issues and heart break. And he is working towards that goal today. I only tell you this story, because you have a similar one and I’m so proud of you that you can share your story.. We may not be able to understand a situation, but we ARE able to bring glory to God with how we respond, and how we help others. I saw your video about the ‘gray hair’ comment, and loved it. You are so right – Be the Best Person you can be. Be THAT person. Every day.
Dear Rachel
A friend sent me a link to your video today So I went to the internet to read more about you
Your story is amazing …You are so young and yet so wise
I will share with my chldren, because you are a real -life example of the wonders of love and faith
All the best in all your endeavours
And THANK YOU
I love your story and your faith!! I am so glad you got the proper diagnosis and treatment! I just wanted to share that cortisol is not the only hormone you need to live. I feel your statement that cortisol is the only hormone you need to live was dishonest. Insulin, PTH and aldosterone are also essential to life. I have type 1 diabetes and I can assure you that if I didn’t have insulin, I would die quickly. I can relate to the pain and heartache that come with living with a chronic auto immune disorder. My heart goes out to you. I believe in miracles too!