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.
What an amazing story-thank you for sharing it with everyone! Found you through your grey hair video which I just loved. Have you “met” Danielle Walker? She is a food blogger with an autoimmune disease also. Her story is incredibly inspiring too. You can find her at http://againstallgrain.com/about-me/ in case you ever want another partner in food blogging autoimmune life. ?
Hi, Rachel! It is so near to see God using both your faith and food skills to touch and inspire so many people! Thanks for sharing your story!! Merry Christmas!
Rachel:
Idk if you are still reading your comments **this is carryover from the video I just saw on the internet from last night so I hope my fragmented thoughts make sense :-/*
I have an rare auto immune disorder( originally the docs thought I had Addisons after my CFH and coma but found favor w a cousin) as well and it has my hair about 1/3 gone (I’ve been coming to grips w that) no moisture, no tears, no saliva all things I have to compensate for difficultly and hope the general public does t notice too much. I’ve done alright, but the weight and swelling omgosh is horrific to deal with at times mostly because it’s so sudden of a shift the pain of stretching or shrinking just hurts immensely which most people just don’t understand. The medications can cause it within a 1-2 week period and I’m talking 4-5 sizes easy up or down. It’s been rough. Initially I wasn’t supposed to live from the coma, then not get out of bed (3yrs later!), and not talk – read – or recall again (all of which are mostly recovered too) but lots of damage internally so along w the auto-Illness, meds, gotta deal with not ever being able to have kids from bouts of cancer, and the most recent hit to the gut — kidney failure. (Making that swelling worse ugh!). Usually I WOULD NEVER talk even a little bit about my health but your video was so empowering to so many people that needed to hear your message and that so many people have read these various stories I thought sharing was the thing to do. I didn’t let the coma stop me, nor their lack of belief in me to recover- I did the whole recovery on my own and continue to do so. FINALLY broke down and went to a wig store ~ not sure what I think about the process but my pic is w one of them, obviously! So I’ve been that person and am trying to be a better one; it’s stories like yours and the depth and passion and conviction in which you speak that moves people, inspires and ultimately changes them for the better. Don’t be afraid of posting positivity, ever! Continue your message sweetie, you’re awesome and wonderfully inspiring. Naysayers can be ignored easily and like you said, not worth wasting time or energy over, esp when people like us don’t have as many years on this earth! And as for the grey/silver… my gram told me once when I was little, the streaks in her hair were from angels that came at night in and combed her hair while she slept watching over her and they left the strands so she knew she was watched over. So personally, I’ve always been in awe of silverly strands– it’s always in the perception and that’s what you’ve hit home on with your message, so thank you for being so courageous and encouraging me to share part of my story even if no one reads it! I wish you ever happiness- tho I’m certain you have it since those strands prove you have angels watching over you (my gram was rarely wrong ???).
You are definitely touched by the hand of God as a gift to be used in this manner; I never ask those questions either about bad things because it is a testiment in itself that we survived and skated death so many times.
Keep living life, loving hard and laughing until your belly hurts because in those moments which are all to fleeting you will give memories to cherish. Be Blessed
?Terri ?
Your story rings very true to me. After giving birth to my first child eight years ago, I became very sick over the next six months while doctors dismissed my symptoms as the flu. I ended up in the ICU and was diagnosed with Addison’s disease and Grave’s disease, and I was in Addisonian crisis and Thryoid storm. It took a year to gain back my strength and feel ‘normal’ again, and although I occasionally find myself back in the hospital, for the most part, my life is great… I even was able to have a second, healthy child with an uneventful pregnancy after believing I would never be able to have another child.
Good luck and stay strong 🙂
People are to quick to blame God and I have so much heart ache that for me I guess it was easy for me to do so. I lost my mom in 2015. She was 63 years old. She was fighting cirrhosis. I ask myself every day if there was something I could have done, if there was some place I could have taken her. I realized we would be loosing her when the liver specialist said my mom was dying and that she needed a liver transplant in order to survive. The doctors at LA general hospital didn’t listen and released mu mom. 2 months later my mom landed in the hospital which would be her last time, this time they said there was nothing they could do and we brought her home to die in peace besides her family. I did blame God, I needed and still need my mother but you know what? My moms death had brought our family closer, we look out for one another fiercely and after losing my mom we make sure my dad is keeping up with all his appointments and medications. If anything, my moms battle and death has taught us to NEVER give up, to keep pushing even though doctors tell you otherwise, and to love one another and see each other as much as we can because LIFE is too short. Thank you for sharing your story and for letting us know that everyone has their own issues to deal with but we are not alone.
Hi Rachel .. thank you so much for sharing your personal story. I’m glad that you have such strong faith in God. I hope you will continue to rely on His guidance. God Bless you and your family.
With my auto immune disease I didn’t think I “should” try to have kids. You’ve inspired me and made me realize I SHOULD HAVE kids. I’m crying as I read your words. My husband and I can know that happiness, and I can still be the mom I’d always wanted to be.
Thank you so much.
Your response about your gray hair came across my face book feed. I was interested to see what you said, because I became almost completely gray at 30. I too have an autoimmune disease. I have SLE or Lupus. I became gray because I was given chemo to stop my kidneys from failing. . My hair fell out and grew back in gray. The chemo did not work and I ended up on dialysis. I have had so many surgeries I have lost count. After 4 years on the transplant list. I had been told I needed to have another surgery for my dialysis access. I lifted my eyes heavenward and said, “Lord I need a transplant and I need it now” Forty five minutes later the phone rang and it was the transplant team. I had my transplant. I believe in prayer and I believe in miracles. That was in 1993. Since that time I lost that kidney and then after another couple years on dialysis was blessed with a second kidney transplant that I still have today. My kidney was a perfect match, which they tell me does not happen with a 2nd transplant. I am so blessed to have a wonderful husband. I have never felt embarrassed to have gray hair so young. I felt thankful to be alive. I to this day do not care if people know how old I am. I have already lived 42 years longer that the doctors said I would. Men make predictions and God laughs. God had another plan. My completely mutilated arm is my badge of courage. I would tell you more of my story but it has been a long road with many twists and turns and ups and downs that bore even me.
Good for you for embracing who you are, for pursuing your dreams, for being brave enough to put yourself in front of the world and admonish all of us to embrace who we are. I don’t know you, but I will tell you this. I am proud that there is a young women in the world putting forth such a positive message. Take the best care of yourself possible. I know how hard that can be. Be vigilant about your health. I am optimistic that you will live much, much longer than anyone but God would have predicted. God bless you and your family Kim
Thanks for sharing your story and living life fully. God is honored as you do and many of us are encouraged too. May He draw you ever closer and empower you as you follow Him.
Rachel, I am sitting here sobbing at your story. I, too, had a pregnancy that almost killed me. I had a bilateral pulmonary embolism at 12 weeks with my youngest son, due to an undiagnosed genetic blood disorder. My doctors also told me to abort, almost to the point of bullying me. I was told that either my son, myself or both of us would die if I continued with the pregnancy. I simply shouldn’t have been alive. I had 96% blockage in both lungs, I too was miracle. I persevered through God’s peace and strength, and I have my own little miracle now almost 8 years later. You are beautiful, your family is beautiful, and you are truly an inspiration. You are a remarkable woman who clung to God when the world and life tried to take you away from it. Thank you for your story, your faith and your inspiration.