Autoimmune Disease

It’s Your Health. 

Going from doctor to doctor.. for months, years even.. maybe you have a diagnosis, maybe you’re still searching… There’s always that question, though: When do I stand up for my health and take the wheel away from a/my doctor? Let me answer that question:

Never.

Let me also give you an alternative, using my story as an example..


Something was wrong. My newly wedded husband and I both felt it. What it was? We had no idea.

Before we married, I got the diagnosis of Celiac disease. I thought maybe I still wasn’t getting my new ‘no gluten’ diet down correctly! So we kept working at my diet and kept hoping that sometime soon, I’d get better. (If you’d like a list of symptoms, just contact me.)

One day, I felt a stomach bug coming on and needed a note for work (doctors can’t do anything about viruses! I felt so crazy walking into an urgent care with a stomach bug…) The doctor felt that she wanted to get some X-rays of my abdomen to make sure everything was moving along ok (I have never heard of that, but ok, sure). She felt that I may have some type of parasite, so she also started me on an antiparasitic drug. (Which ultimately proved not to work – and after tests we found no parasite was living off of my miserable body! Whew.)

The X-ray results were transferred to my primary care physician, and they contacted me to set up an appointment so that we could talk about them. My husband was working at the time and was unable to come with me, so I asked my mother to tag along side.. (my brain was so fogged over.. I couldn’t think of the correct questions to ask for even one second!)

My X-ray results had shown ‘something’ on my pelvic bone. They weren’t sure what, and told me “do not look this up on the internet when you leave here.. it’s going to be ok.” She gave me a complicated name that.. I’m not even sure I heard..the one word that I caught from the doctors moutb echoed in my mind: “cancer”.

She set me up for a bone scan at a local hospital.

Results: no cancer. So much relief!

Still sick. Still no answer. I had to be making this up in my head. 

ER visit #1. Pain. 

ER visit #2. Pain. 

ER visit #3. “You have gallstones. Follow up with this surgeon.” The surgeon scheduled me for a HIDA-scan at the same local hospital that I now felt as if I lived at. Thank goodness for me, my husband was able to sit alone side me and play calming music to sooth my nerves.

Surgeon follow up: “I’m not taking your gallbladder out. It’s not causing your symptoms; it’s function is too high for me to remove it. Follow up with your GI doctor… I’m not sure where else to send you..” (since the pains they were focusing on were in my abdomen).

GI doctor, who I’ve gone to for years, did an upper GI scope on me, attempted a 48 hour stomach acidity measurement – I was not taking that, performed a BRAVO procedure, and due to the results of the BRAVO probe, he referred me to a surgeon in Dallas, TX (6-7 hour drive from where I’m at) that could perform a surgery that would help keep my stomach acid in my stomach instead of in my throat (the LINX procedure).

After hearing that I was not a candidate for the surgery, we drove the long way home – disappointed.

And I gave up. I didn’t know what else to do.

Until:

A random visit to another urgent care came with blood results needed to send me to a rheumatologist.

3 years in the making. It had been a journey that was far too long. But I finally got my not so positive but tested positive results: Fibromyalgia and confirmed and positive test for Sjögren’s Syndrome. While this should be disappointing to hear my truths, I was in such relief just to know that I wasn’t crazy. I wasn’t making this all up. It wasn’t all in my head. I really did feel absolutely terrible. I wasn’t making myself feel this way. 

I’ve been seeing my rheumatologist for 2 years now, and while she suggests some things, often times, after a while of trying a new medication and figuring out that it won’t work, I call their office and leave a message “what if you could raise the dose of plaquiel?” (My last proposal) “the only time I’ve felt normal, no fatigue, and motivated was when she started me on the lowest dose, but now I think my body is used to it. It’s kind of plateaued.”

I tested her plan first. Be compliant. Always trust your doctor. They went to med school for a reason; they know what they’re doing.

But then again, if their plan doesn’t work, you’re the one who knows your body. 

Ask questions, be involved, make suggestions. It’s you who has to live with the sickness – not your doctor.

“Sometimes you’ve got to learn to listen to yourself and be ok with no one understanding.”-unknown

And here you are living — despite it all.“-rupi kaur

✌🏼&💜,

Bailey

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