"What are we celebrating?" / "My daughter found out she has a debilatating disease."

"What are we celebrating?" / "My daughter found out she has a debilatating disease."


I am totally fine now.

Over the weekend I experienced a situation similar to Dorothy's when she visits oodles of doctors to try to find a diagnosis for her illness. We later come to find out that she has Chronic Fatigue Syndrome, but only after being dismissed and misdiagnosed by a handful of doctors. Granted, I do not have a debilitating disease, thank goodness, but I did have a scary experience that got me to thinking about how we must advocate for ourselves and trust that we know what we're feeling more so than some lab result. 

dorothy_CFS_plus hill.jpg

On Sunday, I was taking a walk with my son and my husband around the neighborhood. With a newborn in the house, we try to spend some time together just the three of us so our oldest doesn't feel as though he never gets any of our attention. 

At one point during our walk, I began to feel dull, achy pain in my lower left abdomen right around my left ovary. As as kept walking it began to spread until it had taken over my entire lower abdomen where my uterus is and felt like one increasingly tense contraction that just would not release.

As someone who just gave birth (as in, it already happened so there should be no labor-like pains NOW) I thought maybe it would go away after a moment or two, but by the time we sat for a water break a few minutes later I realized I could not comfortably or easily get back up to walk the rest of the way home. My husband walked our son home (luckily, only about a block away) and came back with the car to get me. In the 5 minutes he was gone, the pain had gone from about a 4 to a 7 on a pain scale and I could barely talk through it. When he arrived with the car, I told him to drive me to the ER.

The good news is that this contraction/episode/whatever you want to call it lasted a total of 25 minutes, but it was a very painful 25 minutes. I couldn't sit still in the car and I had to take to my labor breathing exercises because I didn't know what else to do. I needed a wheelchair to get into the ER because my legs felt wobbly and I was starting to get dizzy. By the time I was completely triaged and registered, the pain had passed but I still wanted to know what the hell that was.

I was admitted, they ran urine tests, blood tests, ultrasounds, vitals and all that. After hours of waiting in the ER, a nurse came into my "room" with a syringe and said, "You have a UTI. These are some antibiotics to get you started. It will work faster than pills."


I thought maybe there was more to the story and they were just getting the ball rolling while they got more results back. A little while later the PA (we'll call him Dr. Bud) came into my "room" and said they got all reports back and that was my final diagnosis; a f*cking UTI. I looked at him like he had 10 heads.

(Okay, so I added the cuss word because I don't think "a f*cking UTI" is a medical term, but I digress.)

 A UTI? Seriously

I thought, okay Dr. Bud but that doesn't explain anything about the reason I came into the ER in the first place. I just had a baby for f*ck's sake and I've had a uterus my whole life; I think I have a handle on where my pain stems from. Dr. Bud just looked at me like, 'What else could you want? We found the issue. This is it. End of story.' My thought process was, Did you even read my symptoms?  Dr. Bud left without addressing the severe pelvic pain and contraction-like symptom and was ready to send me on my way. I was so dissatisfied with the explanation (and more so with his satisfaction of that explanation because it was so clearly NOT one) that I requested clarification on why the pain wasn't being addressed. It turns out that because they couldn't see anything else in the lab work or ultrasounds, the one thing they did find was what they were left with and decided the buck would stop there. Dr. Bud added, "If you feel it again you should go to see your OB/GYN." 


I saw my OB/GYN the following morning (we'll call her Dr. Chung) and while she said everything looks fine so she couldn't say for sure what it was, she believed that I felt what I felt. She said, "You don't have a UTI. They just didn't know what to do with you because nothing else was coming up in the tests. They were wrong; you were right."



As was told to Dorothy about these doctors who misdiagnose, they

"...sometimes have trouble believing it exists since they're not able to see it under their microscope just yet." 


My point?

Always advocate for yourself when you think something is off. If you find yourself at a dead end, search until you find a doctor who can give you a detour. 


In friendship and cheesecake, 


1 year from now

1 year from now

Get it, Sophia (and you too!)

Get it, Sophia (and you too!)