Undiagnosed – An Open Letter to the Man Who Saved My Life
April 12, 2017
You may not realize this, but it’s been two and half years since you saved my life with a single phone call.
In June of 2012 I began experiencing episodes of shortness of breath, difficulty swallowing, and severe reflux. I also started having “attacks” in the middle of the night in which I would wake up feeling like my body was on fire, choking and gasping for breath with my heart pounding and my bowels contracting. Every time it happened I would reach over and touch my husband and whisper goodbye because I was sure I was about to die.
I was referred to a Gastroenterologist for reflux. He did an upper endoscopy. If you’ve ever read my blog UnfunnyMe, you may remember that rather humorous episode which was featured on Freshly Pressed. But my story didn’t end there and I gave up trying to write or blog shortly thereafter. Very little in my life was funny, or even unfunny-funny, after that.
The reflux medication I was given didn’t help. The GI doc was left scratching his head. He told me he’d scoped hundreds of people who looked a thousand times worse on the inside and didn’t have my severity of symptoms. He gave me a stronger medication.
A few days later I had a massive allergic reaction and ended up in the ER. They assumed I was allergic to the reflux meds and sent me to an allergist. The allergist did skin testing and said I was allergic to a few zillion things. I was started on allergy shot therapy.
Instead of improving, I got worse.
I started losing weight rapidly. My hair started to fall out. I could barely eat because every time I ate I felt like I was choking. That’s when I was referred to you to do some barium swallow studies. I remember the first time I met you in the radiology room. You were wearing scrubs and a big smile that put me at ease. I remember calling you, ‘Doctor’. To my recollection, you jokingly replied that you weren’t an MD. You said you were a speech pathologist, which was way better than being an MD. You were right.
Although you couldn’t find anything clinically wrong that could explain what was happening to me, you never made me feel like I was crazy. You followed up with me. You never patronized me or belittled me when I went on and on with my extensive list of bizarre symptoms. You were patient and kind. Instead of merely trying to placate me, you searched for answers. You responded to my questions, emails, and calls. If you ever thought my problems were “all in my head” you were the only one who never let on.
Over time, I was seen by four different Gastroenterologists, three different Allergists, Pulmonary, Neurology, Endocrinology, Cardiology, and Internal Medicine. I was seen in the ER at least eight times. I told every single doctor I saw that this all started shortly after a tick bite in June 2012. They shrugged. I had tested negative for Lyme Disease. They pushed scripts for anti-anxiety meds and referrals to behavioral health and couldn’t quite meet my eyes.
By August of 2014, I had gone from a healthy 123 pounds to 96 pounds.
I had lost half my hair.
I had difficulty concentrating and trouble walking.
I started forgetting things.
At first it was just little things like where stuff was in the house, what I did the day before, appointments… Eventually, I could scarcely remember what I did five minutes earlier. But through all of this you kept in touch. I still have the emails. Sometimes they just said, “Hello? Respectfully, Bryan”
I knew you were there. I knew you were rooting for me.
By September I was rapidly deteriorating. I weighed 91 pounds.
I slurred when I spoke and frequently forgot words mid-sentence.
My eyes and skin were tinged with yellow.
I was so dizzy all the time I could no longer drive.
I had muscle spasms and was so weak I could hardly walk.
By day, I stayed on the couch and could barely make it to the bathroom.
I ate in tiny little bird bites.
I lost positional awareness.
I had night blindness and hallucinations.
I kept one hand on my neck at all times because it felt like my head was “floating away.”
At night, my husband would carry me to bed. I hated to close my eyes because I knew how it would end. I would sleep a few fitful hours, only to wake again with my heart pounding, gasping for breath, feeling like I was about to die.
I stopped calling my doctors.
I stopped begging them to find out what was wrong.
I stopped begging them fix me.
I felt as if my body had betrayed me,
and the practice of medicine had failed me.
I gave up.
I don’t remember why you called me that day in early October. All I know is that I told you what was happening and you told me you were going to hang up and call me back from the ENT office next door. I didn’t really believe you. I remember thinking it didn’t really matter if you called back because it was too late– I was dying and there wasn’t a damn thing anyone could do. I remember being surprised when my phone rang two minutes later.
You had the ENT book me right then for an appointment the following morning.
A couple weeks and several visits later, that same ENT and a Neurologist put their heads together and diagnosed me with B12 deficiency. I sobbed when they told me. I was convinced they were just placating me again. Then I went home and looked it up myself. Nearly every one of my symptoms matched.
I found out later that if it had gone on much longer, I would have been severely disabled or dead. According to Harvard Health, B12 deficiency can lead to depression, dementia, psychosis and irreversible nerve damage if left untreated. The condition is also easily overlooked.
That same week, I also tested positive for an allergy called “Alpha-Gal” which causes delayed (sometimes life-threatening) allergic reactions to a carbohydrate found in red meat. The allergy is caused by a tick bite. I hadn’t been having panic attacks in the middle of the night. I’d been having allergic reactions. While the condition is not yet well understood, an educated guess is that the allergy, known to cause a myriad of GI issues, led to “malabsorption” in my gut, which eventually led to B12 deficiency.
When I get my B12 shot every week, I often think about that phone call with you. I’m grateful to the doctors who finally diagnosed me, but I’m more grateful to you for acting without hesitation when you sensed that something was seriously wrong, for getting me where I needed to be, and for helping me when I could no longer help myself.
Two and half years later, after months of physical therapy and hours and hours of yoga, I can walk fairly well by myself (and only look a little drunk). I still have some ‘visual processing’ issues (nerve damage from the B12 deficiency) that make it difficult for me to navigate new or busy environments. But the impact of these things on my life is small compared to what might have been.
I’m back up to 112 pounds.
I have cheeks again!
I can drive.
I can ride a bike!
I can walk on a sandy beach without feeling like I’m about to fall over.
I can stand in the kitchen and cook.
I can go out and have fun with my family.
Last summer we went to a huge indoor ropes course and I managed to make it to the zip line in just a few hours. 🙂 It was a perfect day. Because of you, I’m still here on this earth. I get to hug my children. I get to kiss my husband. Because of you, I look forward to each day and every new adventure that awaits.
I hope that everyone everywhere who suffers with an ‘undiagnosis’, who feels placated, dismissed, or belittled, who desperately wants someone to simply believe them and help them find the answers to their illness, who has given up— I hope they all find a ‘Bryan’. The world is a better place with you, and others like you, in it.
I recently discovered via social media that you and your wife Christa have started an online fund to raise the last of the money you need to adopt a child from Columbia. I can’t think of a better man or better family to raise a child in need of a loving home, so I’m sending this letter and my request out into the world, and hoping the world will respond.
Namaste & God Bless,
Dear Readers, Family, Friends, and Fellow Bloggers—
Today I have the opportunity to give something back to Bryan and his family. They have saved $20,000 of the $30,000 they need to adopt. I humbly ask that anyone reading this letter, anyone who has ever been given compassion and understanding, or a hand when they desperately needed it— to please consider sharing the love and making a $5 tax-deductible donation to Bryan and Christa’s adoption fund. You can read more about Bryan and Christa and make a donation at the following link: https://www.purecharity.com/cinco-lewis-adoption
With hope and gratitude,
I’m so glad you shared this amazing story, and that you had someone looking out for you. Keep feeling better. Love you, TMarie, and I think of you often!
Спасибо за пост