My Human Body Suit Sucks and a ‘God Thing’

In early-May, after two months of continual, extreme chest pressure and shortness of breath, (and basically all the COVID-19 symptoms feasible), David drove my stubborn butt back to urgent care. I refused to go at first, even after David insisted, and didn’t actually go into the clinic until my boss and good friend/coworker made me promise. I think it was the death-cough (my consistent hacking during an online work meeting) that led them to beg. “Promise us you’ll go, today.”

I hate doctor visits. I mean really hate them. I hate medical stuff. But it just so happens that I was gifted with a lousy human body suit that requires constant tune ups. Cha-ching!

After a masked medical worker administered an uncomfortable nose swab (COVID-19 test) through the car passenger-side window, and I doused my hands in two different hand sanitizers, and snapped at David, I was given a white-paper pass to enter the health clinic. I so did not want to be there!

The building was mostly empty. No other patients in sight. They didn’t let you in, if they thought you were contagious. But I’m not clear on who ‘they’ actually were. It was oddly quiet, with anti-bacterial gel dispensers sprinkled throughout. I lost count of how many times I coated my palms in the clear, pungent gel, and contemplated how I might store some aforementioned gel in my purse for later use. Memories swirled in of my Grandma Evy and her large-mouthed purse. That time when she was ushered out by the casino security guards, after filling several ziplock bags with mounds of roast beef from the all-you-can eat buffet.

It was about the fourth or fifth hand gel palm-smashing, when my last name was mispronounced aloud. Inside a windowless room, the nurse practitioner spent at least twenty-minutes straight speaking with me–seated, at eye-level, with a reassuring smile. She made sure to also collect my long overdue blood work. Tests I’d avoided since January, as I am so very tired of doctors trying to figure out what’s wrong with me. Blood results indicated very low Vitamin D levels (nothing new) and low stored-iron levels (nothing new).  Everything else seemed normal. The nurse then explained how she, like me, had asthma, and that the COVID-19 risk for asthmatics was not as bad as medical experts first thought. Upon her words, I felt instant relief. Huge relief! Boundless relief!! The kind of relief that lifts a giant boulder off of your shoulders and then offers spontaneous moments of delight weeks after the event.

The second-best part about the office visit, beyond the fact that my asthma apparently no longer made me a sitting goose for the pandemic virus (after all, my nurse practitioner was alive!) was that I could, alas, after 60 days of being homebound, leave my house to go to the store to get what I wanted to eat (blue cheese, main craving). The first-best part about the office visit was that the nurse practitioner seemed to truly understand me! She was so patient, attentive, and kind. Unlike most medical professionals, she wasn’t wearing a mildly irritated expression, after I’d rambled on and on about my most recent facts about my current medical status.

I told her as much–that she was the best medical professional I’d EVER seen! Explained how I truly appreciated her taking the time to explain things, to order the overdue blood work, to provide much needed reassurance. And I meant it. Every word.

Minutes before leaving, with instructions to come back, if my breathing worsened, I added something or another about being on the autism spectrum, and that she made the trip much easier than I imagined. I explained how David had driven me to the clinic only the day before, and how I’d chickened out, unable to go inside the building, and ordered him to drive me home. How we’d quibbled in the Subaru. The nurse then revealed an amazing truth. She too was autistic!

We then shared some stories. I reassured her a bit on a topic related to empathy, explaining that she did indeed demonstrate great amounts of it, despite what her peers had said to her in the past. In the end, I discovered she’d read my book, Everyday Aspergers, and that my writings had made a difference in her life. I considered the whole incident, as did David, a God Thing. My higher power had placed the perfect person in my path. The only person, likely, who could offer the logical and compassionate reassurance I needed to get through the next months. She was smart enough to match my inquisitive mind and countless hours of research. I’d been to hell and back, fearful I’d die in my sleep, and with frankness and clarity, she’d helped me navigate out of the darkness. I love, immensely, that she was/is autistic! I’m still jumping up and down in my mind. (I can’t jump up and down for real, because of my Ehler’s Danlos Syndrome.)

Today, as it goes, I am no doubt battling with some residual fallout from being ill (and this reject-body-suit). Though, I’m not quite certain how much of the current pangs have to do with whatever virus I acquired. (The COVID-19 test came back negative, again. I think I’ll know more after an anti-body test. David is 80% certain I contracted the novel virus. I go back and forth from being dead certain, to unsure.)

My hormones are all out of whack. I’m almost 52 years old and peri-menopause is wreaking havoc on my sagging body. Muscle tone is evaporating. Hormones are out of control. Up and down and non-existent. Spiked and dived down deep. My newest, latest, and greatest symptoms are unbearable foot and leg pain. It’s non-stop. Doesn’t matter if my legs are up or down. If I’m well rested or trying to sleep. It feels like shin splints all over. My ankles are akin to toothpicks holding up unbearable weight. My feet hurt, and it seems I’ve acquired pretty much every ‘bad’ peri-menopausal/menopausal symptom you could think of. My hips, and every other joint I could name, ache. Most of the pain is the sides of my legs and knees.

As always, I’ve learned I’m the best at figuring out what’s wrong with me. Doctors typically scratch their heads or offer pain medication remedies. At least the shaming and suspicion stopped a few years back, with the acquisition of a long list of ‘official’ ailments listed out in plain sight on the computer system.

After much typical trial and error, I’ve narrowed my newest aches and pains down to the hormones likely affecting my mineral and vitamin and hormone levels. Oestrogen, a female sex hormone, takes on a variety of roles in the body, including strengthening bones. I imagine the fluctuation in oestrogen is causing issues. My already messed up autonomic nervous system is likely more confused than ever. Ehler’s Danlos Syndrome isn’t helping matters. I can’t pinpoint what my connective tissue is up to, but it ain’t no picnic.

I now have collected approximately 50 bottles of vitamins and minerals. My right desk drawer is a pullout supplement store. Honestly, I’ve been severely depressed with the pain. Pretty much only reason I am here is for my boys and David. I’m not suicidal, but thoughts of a long rest aren’t so bad. It’s not the pain itself, but the fact that I’m going on 20+ years of non-stop pain symptoms flaring. Each month it’s something new or something from before, returned bonafide, masked, or renewed. What gnaws at me, is a mixture of extreme fatigue, constant guessing of how to get better, and novel symptoms. Oh, yes! And, my death-phobia! Why the powers that be gave me such a f**cked up body and coupled it with an over-active-I’m-dying brain, is beyond me.

For now, I’m boosting my D, calcium, iron, and magnesium intake. Hey, at least I finally got D in the compact, bite-size chocolate cubes! Thing is, I know too much. I know too much of anything is a bad thing. And with the way my liver is slow to detox, I don’t actually know when I’ve had too much of a good thing. So, it’s a guessing game within a guessing game. Kind of like the rest of my life. However, please note, David just kissed my toes. So life isn’t all that bad. Indeed, on my big toes only, I have a sliver of nail polish left. A smidgen of teal that I started growing out day one of my shelter-in-place. It’s not so much the toxins in nail polish remover I fear. Moreover, I wanted to see how long the pandemic (global crisis) is lasting, using my toe nail polish as a makeshift timeline.

For more amazing things, see myspectrumsuite.com

 

7 thoughts on “My Human Body Suit Sucks and a ‘God Thing’

  1. Ok so weird. I read this during a hospital visit for unexplained symptoms ( not Covid but abdominal etc) and the same thing happened with my experiences and my medical Anamoly issues … I also had a good nurse for once ( tho no they were not also autistic nor recognized me in any serendipitous way tho bravo for you in that regard 🥰😊) but otherwise I was astounded by our similarities. Except I’m in my thirties but my hormones are acting up and I have so many conditions and I’ve said no to the hysterectomy too many times to count and they get frustrated with me ( long story) but thank you for writing this – I have too many thoughts and this has been the week from hell but when I get more time I wish to read this to my family so they know my odd stories are also semi repeated elsewhere by wonderful people.
    Thank you

    Liked by 1 person

    1. Thank you for sharing. I said not to a hysterectomy after it was scheduled years ago. My trusted acupuncture, from Japan, a healer many traveled to see, said she would never remove anything from her body unless it was life or death. That stuck with me. Hang in there! I’ve had a tough couple days!

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  2. I’m so sorry and I hope you recover! Yours sounds tougher – I do not do much as want a sniffle in these time’s.

    Thinking of you ( and great advice!)

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  3. I just love this! It could as well be me writing it. I know too much also. Doctors and nurses don’t like that. Do you have B12 methylcobalamin? It dissolves in your mouth and helps with pain. It keeps my trigeminal Neuralgia at bay.  Thanks for sharing this. Darlene

    Sent from Yahoo Mail for iPad

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    1. thank you. I was just thinking I need to get more of that! I used to take it more regularly. All the best to you. I am taking coconut oil to help with nerve pain from shingle that settled in face = trigeminal neuralgia. All the best to you.

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  4. Hi Sam, So pleased the universe led you to someone kind who listened and understood you! And that you had been able to help her two with your amazing blog/book. (Sure the book is amazing too altho not read it yet). Sorry that you are in so much pain. I have hyper mobility syndrome (suspect EDS but not easy to get diagnosed in UK) and find that my muscle/joint/allover/ whatever pains are so much worse when I overdo carbs, try to stick to GF low sugar/carb diet an increase the good fats, supplement well and take good gut bugs ….. but it’s an ongoing willpower battle! Current thinking as I am sure you know is that inflammation plays a massive part in pain and auto immune disease and sugar / carbs promote inflammation. Also CBD oil can help me with the pain (but it is quite pricy of course!). A lot of what you write resonates with me, currently asdq and have been for a couple of years after researching online for a long time….. thanks for your blog it has been a treat to read your posts as I am struggling to sleep at mo again, going thru another flare of gastro stuff, sending love and peace to you, Heidi 🙂

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    1. Wishing you the best and that you find relief. I have tried most of what you mention. Will power for me comes into play, and I find whenever I go low-carb my proteins, magnesium, and other minerals go out of whack that triggers my POTS. It’s a guessing game. MY bowel movements (sorry for those words lol) are actually much better when I eat carbs. so who knows. Agreed on sugar. Dairy and other things cause inflammation. I’ve read so much on health over the last 19 years, that I have too much contradictory info. in my head. Take care and peace to you!

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