My kidneys decided that the 18 of June would not be a good day for my next Spinraza injection. This, despite my admittedly questionable attempt at hydrating in preparation for it. My urine, though average looking in the sample cup that I zip bagged and cradled in my lap on the way to the lab, carried a protein payload that would choke a horse. For the second time since being aware of and keeping track of protein to creatinine levels, mine were 875 again.


Let me remind everyone that ‘normal’ range is 61-161. My levels as of 2 weeks ago were 8-motherfuckin-75.


I knew I hadn’t been feeling well. I knew my kidneys were ouchy. I figured it may be a UTI or other such nuisance. I halfheartedly drank cranberry juice and went about this quarantine life. What I hadn’t connected was my not feeling well, to my blood pressure, which was flirting dangerously with not okay levels. I found this out after a nurse who came to check on me took my pressure one day and flipped the fuck out cause I was 155/101 – this was after having been calm after being upset and NOT taking my bp meds. She urged me to buy a bp machine and keep track of my pressure. And to take my damn medicine on time.

Still didn’t connect my not feeling well and possible UTI situation to anything until my labs for Spinraza.

Now what does one have to do with the other?

The better question is, what governs blood pressure?


Your kidneys regulate the levels of sodium, potassium and calcium in your blood. The kidneys remove waste and excess water. All those things that the kidneys do, help to regulate your blood pressure. And mine was getting out of control. My ouchy kidneys had been telling me that fuckery was afoot. And I blissfully ignored them as I ate salty ass Chipotle, fish sticks, chicken tenders and chips – on repeat. All gluten free of course, cause I wouldn’t want the gluten to kill me when all that salt would do. ?

After buying my own bp machine and tracking my pressure twice a day for a good week, I changed a lot of things. No Chipotle for the foreseeable future – I gotta treat it like a treat and not a staple. No chips. Fish sticks and chicken tenders in moderation. Smoothies back onboard, with kidney supportive fruits like raspberries, blackberries, pineapple, strawberries. Bananas but like half of one. Dairy free yogurt for probiotics. Turmeric milk mix to help bring down inflammation and to help me sleep/rest at night. Spinach will be in the mix next week. Watch all my other channels of salt. It’s everywhere and in everything. Jeebuuuss!

Water. Just and more water. Not getting upset. Which is hard to do cause 2020 ??‍♀️

In the short time of these changes, my pressure has finally come down from its recorded high of 155/101 about a month ago, to 133/89. I’m trying to get it and keep it closer to 120/80. I’m due to get new labs in a weeks time.

I can’t say I’m worried. Worried won’t help. Making changes will. And they have. I am however concerned. The time between my injections is stretching into the fifth month. It’s supposed to be 4 months between maintenance doses now. I can see the loss of abilities and weakness every day. My legs don’t want to cooperate. My hands tremble and struggle. The walls feel like they are closing in and it’s getting more snug in this skin. I looked at my forearm today and noticed the spindly slim down of muscle loss from my fingertips to mid-forearm, then the flare of… is that Spinraza muscle?, up the rest of my arm. Time is of the essence against the wildfire spread of corona virus, the disintegration of Spinraza and the healing of my kidneys.

All I can do is put one foot in front of the other and make the next right decision. Every single day. And it’s hard, when things feel so daunting, unrelenting, futile. And that’s just in my body. Let’s not mention what this world is serving.


I’m doing my best Fam and it doesn’t feel enough.

It doesn’t feel nearly enough.