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.
I loved your video, and I am sorry that you had to endure cruelty. You have such a beautiful outlook and I’m sp pleased that you have your miracle girl. I am a bone marrow transplant survivor (and food blogger!) and I too, have a miracle daughter.
May God bless you and your beautiful family.
Sending love and peace.
Thank you for the post about grey hair and this one. I relate to both. I am 53 and love every grey hair. I colored it for awhile, not because I wanted to but because my father and husband felt I should. I did gain a wonderful friend in my beautician that I cherish as well as meeting some wonderful ladies and was able to minister there so I can see how God used it. I did decide I wanted to grow old gracefully and naturally. I feel our families need to accept aging and think more about our lives ending. We need to be aware that life does not go on forever and live in reality not make believe.
Thank you for your post about the mean comment. As I watched, I kept thinking about how beautiful you are and how beautiful your hair is! I’m sorry about the meanness you’ve experienced in your life. Your story and good heartedness also made me feel bad for the bully. What must they have gone through to become so mixed up? You are doing such good work in the world.
Thank you
Thank you for sharing- your words were perfect and really touched me – we have lots of our own “addisons” and am also a miracle along with my son – now six. God Bless ?
I attended a Self-Love Circle today and heard your message; then, tonight on FB I watched your video with the same message. When I hear a message twice, I take action and that action will include to love, honour and be kind and gentle to myself. We all have a story and yes, God helps us to be what He wants us to be! I too believe in miracles!!! Thank you for sharing! Dina
Graves Disease sufferer here….I have had to take hydrocortisone before for low cortisol levels but not low enough to be Addisons. I test using saliva to find out what time of day I am under/over on the levels. That helps to know how to dose the hydrocortisone. Do you do saliva testing? I have the info on where to get a kit from to test it. It may help you in your dosing struggles. I haven’t had to take it now in about 3-4 years but it helped me when I needed it for sure. Finding a doctor who truly understands cortisol and adrenal glands is like trying to find the needle in the haystack.
My bff sent me your grey-hair video today.Thank you for this & for sharing your personal journey.Like many commenting I too have “my Addisons”.In my case it is a complex mood disorder and very rare genetic disease (Fabry’s) only recently ,finally,diagnosed in my family.My “normal” has been dysfunction.I do belong to a faith community but lean toward Buddhist tenants.I struggle daily with feeling my life has meaning,purpose or reason,or that I ad to the life of another.I am a burden and am aware my lack of self care and self compassion is my major limitation at this point.Your message to “Be that person” is profound.Thank you for putting that out there for all of us.
My birthday is in a few days and I am combing purple dye thru my grey flecked hair..Life’s Grace be with you.
Barb
Thank you for such a moving testimony of the blessing of living each day as well as you can. Your example reminds me of a quote-Today is the best day in the history of the universe. Tomorrow will be better. Thanks for starting my day so beautifully.
You are an inspiration to me as I go through the very long and painful process of labeling my auto immune disease. Whatever they find “wrong” I try to take it in stride and continue to do things that bring me joy. Thank you for sharing your incredible journey.
I join in with the many inspirational comments on sharing your story. My son was diagnosed with a rare genetic condition. I’m just starting to research and learn more so I can help him throughout his life. He also has autism and he’s the most courageous little boy I know. Thank you for sharing your journey with so many so we can all learn to be that person who’s kind, caring, and non judgemental.