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.
Oh wow…reading through your story made me sigh…deeply! Indeed a miracle for how did you survive those health problems and not only survived but went beyond yourself! Wow! I feel so blessed having met you even just here. You seem to be such a good hearted woman. Oh may God use you ever more to show forth to the world what He can do in our lives beyond we could ever imagine! May you be inspired ever more in you cooking and baking and sharing yourself unselfishly! God blessings be upon you ever more!
Thank you! ๐
Sitting in the airport reading your story with tears streaming. What a beautiful, sad, inspiring, amazing story. I was already thrilled to have met you in person today; now I realize I am also fortunate. You showed incredible grace today and your true colors shined. Hugs, my new friend โค๏ธ
Hugs right back to you!
Yes, God is good. I have many times been helped through health problems by his Holy Spirit. Thank u for your story
What test finally confirmed Addisons? I have most of the symptoms, but most blood tests are coming back “normal”
The best way to diagnose Adrenal Insufficiency is an ACTH stimulation test. You need a competent and experienced doctor to be able to interpret the results of this test as it is quite unusual.
Rachel, I jave adrenal insufficiency as well. Been on steroids for 40 years. I took dexamethasone for 33 years then found an endo in London that uses a diabetic pump with his patients rather than pills. I had switched to hydrocortisone but was taking pills 5 times a day and still felt awful. 4 years ago I found an endo in Seattle that would work with the Endo in London and I started on the pump. It completely changed my life. I go in once a year for blood draws every 2 hours round the clock for 24 hours and my cortisol is checked. My pump is titrated according to thpse cortisol draws so I know exactly what my individual body needs at what time each day. Its amazing. I now know of over 60 people on the pump that have either Addisons or CAH. It’s a game changer and my insurance paid for my pump, pump supplies and solucortef to go in the pump. You ought to try it. Oh and also…Im 57 and having orthognathic jaw surgery ( double jaw) in June. We have that in common too.
Thanks for your concern. I have additional problems due to delayed diagnosis and am not a good candidate for the pump yet.
You are such an awesome human being!!
I, too, have Adrenal Insufficiency & cant get over the extreme fatigue. Also,have autoimmune issues. SUSAN , can you tell me more about your situation ~& Rachel, you are an amazing jewel!
Susan,
Do you have some detailed information about your pump therapy? I want to talk to my doctor about it, but I want to give her reliable information/studies. My email is marye.allred@gmail.com.
Thank you!
I was just diagnosed with Addison’s in January. My Cortisol level was undectable <0.5. The meds were like an instant cure, I am on oral hydrocortisone, fludrocortisone. and DHEA. Why do you say you won't live past 70? Everything I have read puts the life expectancy very close to normal range +\- : years. I would also love to know more about how to get the pump.
You are a very brace woman. Thank you for sharing your story.
I , too, was diagnosed with AI/Addison’s, after 2 YEARS of dealing with orthostatic hypotension, EXTREMELY low blood pressure upon standing. I could not DRIVE for almost 2 years. Finally my husband mentined my condition to his new endocrinologist & within days of doing the ACTH test & results, he put me on hydrocortisone & have not had ANY bouts of low BP since..BUT….the fatigue…how did u get back into exercising? You are a rare inspirational woman whom I accidentally discovered & now can’t wait to try your recipes & learn more how you deal with your health issues! THANK YOU!!
I feel so proud to be related (your mom is my cousin) to such a woman as you are. Wow! God bless you and keep you Rachel.
Love you dear granddaughter! You are such an inspiration. When I grow up I hope I can be like you!
Rachel – I found you from a comment on the FB Utah Bloggers group. I'm so glad I decided to click on your link! I was just hoping to check out your recipes (I'm a fellow food blogger at foodapparel.com – you're food looks phenomenal by the way and I'm sure I'll be coming back for more!). But then, in addition, I got to read your incredibly inspiring story. I do believe in miracles. I've been a fairly healthy person my whole life, but I gave birth to a little girl with some serious heart problems. I've watched her struggle through multiple surgeries her first year of life, not knowing how everything would turn out. I now see her playing and enjoying life like any other little toddler (with a few small visible limitations), but with the knowledge and fear that her trials are not over, and she will be dealing with this throughout her life and that we'll just kind of have to take it as it comes. Your story gives me so much strength as I often ponder how to support her as she'll inevitably face these challenges. God is good and through every experience, I learn so much. Thanks for opening your heart up and adding to my faith.
Thanks for sharing. I have been in bed since Wednesday recovering from leg surgery. It is boring and uncomfortable. This was inspiring and helped me remember that I can become a better person because of experiences like this.
Thanks for sharing! What a beautiful story and a great encouragement to all of us!
A truly incredible story. You are a miracle. Thanks for sharing.
I just came across your story, I suffer from the autoimmune disease Bechet’s. It is very debilitating, I had four pregnancies. Then when my youngest was 10 months ago. I had have an emergency hysterectomy. I about died on the table, the spent three hours untwisting a removing an ovary, three hours of scar tissue, and they knicked my rectum, and I almost bleed out. Two years later I had to have my thyroid removed because I had 8 tumors, they ended taking out my parathyroid’ sad well, which I only have three instead of four, they had go back through pathology to see if I would die, because with out my body would eventually ruin out of calcium, magnesium and sodium. They realize I had one left but is wa s stunned I spent a month in the hospital getting calcium through pic lines and having it tested. It was finally high enough to go home. I was home one day then had a mild heart attack, because my calcium level spiked. It was so depressed because I was always in the kitchen it was highlight. I always made orange rolls and cinnamon rolls on Sunday and delivered different that I felt inspired too. I was able to recover and it last only two years I had double pneumonia, I was diagnosed a year later with Bechet’s. It attacks my whole body, kidneys, heart, arthritis, pain, sickness after sickness. In the last six years I have the lost person that I use to be. Your story inspires me. I have good days and over do it, because they are few a far between. I should had been diagnosed with my first pregnancy, because we both almost died, my placenta separated and he lost oxygen. This causes him to have multiple strokes. I spent the first years of his life in out of the hospital, he is 20 he is healthy now, he is delayed but happy. My second pregnancy was worse than first I had stay a month in the hospital to keep him 36 weeks, because I need my gallbladder out. I was suffering from infection in the gallbladder and pancreas, I was on.IV,s and clear liquid. After I had him I went home a filled up 40 pounds of water from blockage in my bladder, I was congested heart failure , my doctor told my husband and parents that I would probably make it. I stayed two weeks and then week later had my gallbladder out and piece of my liver taken off. I bounced back three years later decided I wanted another baby, everybody thought I was crazy. I actually had a great pregnancy and plan to take him early, I bounced back then and half later I was pregnant I was not ready, but my little girl wanted to come, it started out bad, every thing went wrong, I started to go go into kidney failure, so they too kind at 35 weeks. She had spend a week in NiCU. I was I would have diagnosis sooner but I would have not changed a thing. Everything I have gone through I am blessed to have 3 sons, and 1 daughter. Your video is so true we never know how long we have. Especially with chronic illness. Everyday is a gift. I have people criticize me everyday, but life is a blessing. I just celebrated my 21st anniversary. I am 42, and my children are 20, 17, 14, and 12. I inherited this disease from my dad. He past way two years before I was diagnosed. They never what he had, he was 68, he married my mom at 14 and he was17. I have traced back three generations. My grandma ‘s made to 62. I love how you choose to rock your hair. Thanks for sharing your story and gift with the world. I look forward to trying some your recipes. Dana Johnson Santa, Clara, Utah