‘A tricky stick’: The challenges of getting blood drawn with SMA

The clock ticked accusingly on the wall. A lab technician had been inspecting my arm for the better part of 10 minutes, all in search of a vein that would put out a nominal amount of blood.

Normally, I trek all the way downtown for lab work. Because of spinal muscular atrophy (SMA), my veins are so tricky I require a special imaging device to successfully draw blood. Whenever I need lab work, I fax the orders to one of the few clinics in Minneapolis-St. Paul with the device on hand.

Of course, the clinic only accepts orders from certain facilities. For the most part, this hasn’t proven to be much of a problem, but my naturopathic doctor (ND) isn’t always recognized as a medical professional, despite the fact that she is licensed with a degree from a nationally recognized and prestigious school.

Fortunately, my primary care provider (PCP) has been willing to work with my ND and send lab orders on her behalf. Because of her cooperation, I was able to identify low progesterone as the cause of my perioral dermatitis. That in itself was worth celebrating. After years of being told by medical professionals that my dermatitis was incurable, I’d found a solution that didn’t involve conspicuous amounts of over-the-counter products.

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With my dermatitis addressed, I decided to move on to other issues, namely a persistent rash on my chest and shoulders. And when I say persistent, I mean persistent. This puppy has abated once in 28 years, and that was only because I was hospitalized and taking an incredibly strong antibiotic. Given that my other skin condition was caused by hormonal fluctuations, my ND decided to test the rest of my hormone levels to cover our bases.

I expected my PCP to approve the order. My ND had solved my dermatitis; her methods were clearly working. But my PCP denied the order on the basis of not seeing the tests as medically necessary.

I didn’t blame her. She’d been unimaginably cooperative up until that point, for which I’m thankful. She was under no obligation to fax the orders on my ND’s behalf. But I was still frustrated, mostly because I knew the trouble it spelled for any future bloodwork. No PCP meant no immunotherapy center with a fancy imaging device that makes me weep with joy every time I see it.

After some back and forth with my ND, I scheduled an appointment at an independent laboratory. I didn’t have to call and see if they had imaging devices available; I knew they wouldn’t.

Bracing for another stick — or a few

I was fully expecting to walk out of the lab some time later with arms full of bruises and not a single drop of blood drawn. The building itself didn’t necessarily inspire confidence. The walls were dingy, the floor shook from the nearby light rail, and the sign outside the main entrance proudly proclaimed that there were no public restrooms. This was not how I wanted to spend my Friday afternoon. But I was a newly converted naturopathy enthusiast with physical evidence of its efficacy. I had to at least try.

Lab work used to terrify me. I would cry and tremble and remember, in perfectly gory detail, all the times I’d been poked with nothing to show for it. (I can’t be sure, but I think my personal record is a total of 11 pokes in one appointment.) But the pain doesn’t bother me anymore, so I rolled up my sleeve and apologized in advance for what was about to occur.

The lab technician inspected my arm. My dad cracked a joke about having warned her it would be rough, which didn’t go over well. The clock ticked on the wall, marking the passage of time.

Finally, she stuck me. As expected, nothing happened. She dug around a little, earning a silent little wince from me. After an agonizing amount of time, she gave up and tried my other arm. I was about ready to pack it in when the blood started flowing, to my surprise and her delight.

“You weren’t kidding,” she said when the deed was done. “You are a tricky stick.”

Later that day, I ripped off the Band-Aid and gasped. The bruise was intense, all blotchy and discolored, pretty in ways it probably shouldn’t have been. I showed my mom, who responded with just the right amount of awe. I’d survived another lab draw, this time with something to show for it.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.