I haven’t spoken in weeks.

Outside of the idle prattle with my Aides, I’ve been pretty silent. On social media and in real life. Things have been hard. Realizations sobering. Life has been feeling very short, finite. But today, I need to do some talking, cause this Village…

Having to take care of my regular medical needs during this pandemic has been a special kind of hell. Last week was particularly difficult because I suspect the added stress of knowing COVID is spreading so unchecked, made getting my blood draws that much more difficult. For two days I risked exposure, with an N95 mask, to have my blood drawn to help check on my body and make sure I was ok-enough. Two days out, fearing what I may bring home with me, despite my taking precautions.

When I wrote that post saying, ‘Today, I give up’. That was not hyperbole. I had been stuck six times and nothing came of it. My veins were having none of it. And so, I slunk home, reclined my chair, exhaled and gave up. There were no thoughts of plans to try the next day, no fire to get things done. If the ground swallowed me whole, I didn’t care. I had tried my best and nothing came of it, though I really needed it to. I was done. Careful and carefully, Bee asked me for my insurance info and set to work finding a place that would come to me to do the blood draw. I sent it and reclined back.

Dejected.

I sat up enough to drink down the smoothie I had the forethought enough to ask my morning Aide to make me and reclined back again. Later that evening, she told me that she found someone who could be at my house at 7am Friday. Going along more than believing, I said ok and perfunctorily thanked her.

I spoke to Heather the next day, sent over my lab orders and tried to erase the past two days from my mind. COVID has had a way of sucking the Life out of me. So even with this finding, I was skeptical. But Heather came. My face dirty with sleep while I was still snuggled in my bed. My morning aide (bless her) came early that day to help. She quickly wiped down my face and made me presentable, which eased my anxiety. Within 20minutes, Heather found not one but two veins between the knuckles of my pinkie and ring finger of my left hand and used pediatric tubes to collect my blood, citing how the smaller suction capacity won’t collapse my already tenuous veins.

The whole situation was a kindness I have not experienced in a really long time. At my lowest and most scared, people were still showing up and helping ? I’ve been touched and thankful. ??

Yesterday I had to brave the outside again to get the results of the bloodwork and get the release from my primary doctors’ office to continue with the Spinraza injections.

Once again, I put on my N95 and headed out. The Nurse Practitioner, seeing me social distancing and waiting in the waiting room, ushered me to the back. “I can’t have you out there – I need to get you out of here!”Her voice firm, worried. I tried to think of all the questions I needed to ask and all the concerns that had been plaguing me. Most notably my concerning blood pressure/kidney health. I wondered in that moment if all the hard work I’d put into supporting my kidneys (which help regulate blood pressure) have made any difference. But I knew the answer to that question. I guess I just wanted confirmation.

In the weeks leading up to this appointment, my blood pressure had been as high as 155/101, with a median average of about 138/98. Consistently. WITH blood pressure meds everyday. That meant my kidneys were struggling. My heart probably too. And so, in the dark late one night, I searched the Davita Kidney Care site to see what fruits I could eat to help my kidneys, which I hoped would help my blood pressure. The next morning I pulled from what I had (and ordered more) and began making my smoothies every other morning. I watched what I ate and cut down my salts. I upped my water, more than it was already. I drank down my cranberry juice and kept a log of my blood pressure as an indicator of how my kidneys were possibly doing. I dropped from the 155/101 range to 145/97. Progress, but it wasn’t enough.

Then one day, while working on my Oui Color Coloring Books IG account, I happened upon Antonia Jenaè’s dancing gif, where she was celebrating her weight loss using the moringa capsules that she herself (yes – she organically grows, processes and bottles her own capsules) makes, and I became intrigued. Not for the weight loss potential for me – I was highly impressed with her progress though… but for how she mentioned that she was able to come off her blood pressure meds by taking them. I asked a couple of questions in the comments and decided that I didn’t have anything to lose. These blood pressure meds, though touted to help, were not very effective as I woke up feeling sick every morning and I knew long term, the pills would hurt my kidneys.

Though I know the merits of holistic medicine, I also understand the importance of western medicine. So my hope was that the moringa pills would augment the work the bp pills were doing and control my runaway blood pressure. So I ordered my pills. I’ve taken two, every day for the past 8 days, along with the other diet changes. Yesterday morning, those moringa pills handed me my blood pressure at 112/80. When I got to my appointment – still sans bp pills (since my bp was ‘normal’), just the moringa pills on board, I clocked in at 120/70. I have not seen those numbers in TWO YEARS.

To tell you that I am humbled and thankful to those in my Village who help me?! If not for Terri, I wouldn’t have met @Antonia and her wonderful, life saving TiTi’s Moringa products. If not for Sarah, I would not have been able to afford them nor the fruits and veggies that are supporting my kidneys. If not for @Bee, I wouldn’t have known what has been happening on the inside of this body. So have the things I’ve been doing making a difference?!

I got cleared for Spinraza. My injection date is July 23.

This Village ?

#DisabledChronicles#SpinrazaStrong#TrueStoriesOf2020#COVID19#TheVillage