Life Without an IV

Life Without an IV

Before all of this coronavirus craziness started, I had an IV in my arm. Over the last several years I’ve gone from using a small peripheral IV in my forearm to, more recently, using a midline IV — a long vein-dwelling catheter that ran from my elbow to my armpit.

I started with the peripheral IVs because I was much sicker then, and they were the only ones that my weakened body could handle. I had initially tried a PICC IV, which ran inside a vein from my arm to my heart. The thought alone of a little plastic tube resting a couple centimeters from my heart freaked me out. And then, when it was inserted in my arm, it became extremely painful throughout my chest and shoulder. So I took it out and tried the peripheral IVs, which were far less painful but only lasted a few days at a time. They were, as it seemed, a temporary solution to a long term problem. Eventually I tried a midline, which was similar to the PICC but didn’t make the turn through my armpit to my heart, and consequently was less painful. The other good thing about the midline was that I could leave it in for a couple months at a time.

The purpose of these plastic twigs in my arm was to get daily infusions of saline and vitamins. Because I have been deficient in a hormone called arginine vasopressin, it became difficult, sometimes even impossible, for me to hydrate through oral consumption of water and electrolytes, thus the need for IV fluids.

Then the pandemic hit and, because of my compromised immune system, I couldn’t risk getting the coronavirus from a nurse or doctor who would have to place the IVs in my arm. So, back in February, I stopped getting the IVs and infusions, and I’m happy to report that my health has, for the most part, remained steady.

On good days I’ve been well enough to put my feet on the ground a few times and try to stand up. Although this hasn’t been unprecedented in my recovery so far — there have been times in the last few years when I’ve been able to do this — it’s remarkable that I’m well enough to do it without getting IV fluids. This is partly because the IV fluids increase my blood pressure and volume, on top of hydrating my body.

It’s hard to say exactly why I’ve been able to sustain my recovery without IV fluids, mostly because, again, I don’t want to risk getting the coronavirus by having a nurse or phlebotomist do bloodwork to see what my vasopressin and cortisol levels are.

What I do know, however, is that I’ve been drinking lots of water and taking electrolyte supplements, which as I mentioned, hasn’t worked in the past but may be helping now. Or maybe my body has undergone a transformation in the last few years, partially healing the functional impairments that were keeping my body from adequately hydrating itself.

Whatever the reason is, I’m grateful that my health is stable without the IVs. I’m sure it would help if I could still do infusions, at least occasionally, but given the circumstances, things could be much worse.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. For those who haven’t heard, my memoir, WHEN FORCE MEETS FATE, is going to be published in January.

You can read samples chapters, add it on Goodreads, and preorder it through many online retailers, in both print and ebook. The audiobook will be available for preorder this fall. Here’s a list of places to order the book (by country):

US: Amazon, Apple, Barnes and Noble, BooksAMillion, Book Depository (ships worldwide for free!), Indiebound, BookShop.

Canada: Amazon, Kobo (soon)

UK: Amazon

Australia: Booktopia

Mexico: Amazon (Sorry, no Spanish translation yet)

Germany: Amazon

Norway/Sweden: Book Depository, Adlibris

Brazil: Amazon

A Personal Plea To Protest 

A Personal Plea To Protest 

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I’ve never been one to protest, well, unless you count not shopping at a certain large retail store whose name rhymes with Falmart. So what I’m about to ask of anyone reading this might seem a bit hypocritical. But that’s okay, I’m gonna ask anyway.

Those of you who have been privy to my struggle with ME/CFS for the last six years probably didn’t know how bad things would get, I certainly didn’t. It’s a dangerous, scary, and misunderstood disease that not only needs more awareness, it also needs more private and government research funding.

Before I got sick I would have given priority to a disease like Parkinson’s or MS, but now I know the exact serious of MECFS; it nearly killed me. For that reason I ask you and anyone you are willing to share this post with, to donate to one of the amazing organizations busting their butt to better understand this mysterious disease. I personally recommend the Open Medicine Foundation or Blue Ribbon Foundation. Both are at the forefront of what needs to change in our healthcare system in order to cure MECFS.

Lastly, and perhaps most importantly in the immediate, is protesting on September 27th. This Tuesday people from all over the world will unite as part of the Millions Missing campaign. 25 cities scattered around the globe will feature protests. Here in the U.S., protests will be held everywhere from Boston and D.C. to Seattle and San Francisco (City Hall at 11 am). It is expected to be the largest and most widespread MECFS protest ever. I hope you will participate. If not for the cause itself, then for me or one of the many lives this horrible disease has tainted. In many cases, including my own current situation, attending the protest is physically impossible. That’s why we need your help.

Now I’m not asking you to kneel during the national anthem, or to stop eating solid food for 18 months, I’m merely asking you to be present for 10 minutes out of your day. And if you can’t make it to protest in one of the major cities, perhaps you can do something in your hometown like tie a blue ribbon to your car or mailbox, or sport a bracelet on your wrist.

At the very least, I hope you will take a few seconds on Tuesday to first remember how much this disease truly sucks, and then to post a message on your social media accounts using the Millions Missing hashtag (#MillionsMissing).

For any or all of the aforementioned participation I thank you in advance. It is these tiny gestures that appeal to my emotions and touch me the most.

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A One Man Nudist Colony 

A One Man Nudist Colony 

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I was completely naked for the better part of an entire year. I wore no clothes. None.  Now, before you file this post away on your “too much information” (TMI) blacklist, first let me promise to keep the intimate stuff to a minimum. That being said, some stuff may be unavoidably revealed. It’s kind of inevitable when talking about being naked.

What people don’t often realize, and perhaps they don’t want to, is that sick people spend a ridiculous amount of time naked. Why? It feels sexy. No, I’m joking (although it does feel a little sexy). There are actually a number of legitimate reasons. Putting on clothes can take a lot of energy, muscle strength, flexibility, and joint mobility. In my case, an obscenely impaired blood pressure and blood volume made it nearly impossible for me to move my body enough to get clothing over my head let alone my extremities.

Another reason is hygiene. Even if I was able to get clothes on my body, the physical repercussions would have been so intense it’s safe to say those clothes wouldn’t have come off until I had regained my strength days, or even weeks later. And that, of course, would mean bathing with clothing on, which I’m not sure if you’ve tried, but it’s just about the least amount of fun you can have with clothes on, and is also probably the least amount of fun you can have while bathing. How do I know, you ask? Oh, I tried it. A few times. And I stubbornly learned that bathing with clothes on, and then leaving them on, is undeniably more miserable than smelling like a dumpster for a week.

I also briefly tried wearing button down shirts. I soon ran into the trouble of getting my arms through the sleeves, so I had someone cut the sleeves off a bunch of old Tommy Bahama shirts from the thrift store. And just like that I looked like Rick “Wild Thing” Vaughn from the movie Major league, rocking a sleeveless tuxedo. Unfortunately it was the tacky floral patterned shirts made for middle aged men that ultimately turned me away, and I soon returned to my life as a nudist.

So I resolved to remain in my own personal nudist colony for a few more months until IV treatments helped my blood pressure, and in turn, allowed me to finally keep some damn clothes on. And I have to say it felt really good. I felt like a human again. So every day after washing up, I would struggle to get a pair of boxers around my hips. This was particularly difficult because I couldn’t lift my hips off the mattress.

I should say, however, prior to resuming my life as a clothed person, I did occasionally allow visitors into my den of nudism. But these guests, fortunately or not, were always wearing clothes. And sorry to ruin the facade, but I was almost always covered by a sheet. Darn.

Still, even in the moment, the ridiculousness of the situation was ripe and often very comical. Once, during a visit from someone very special, I felt the need to have a little fun. No, not that kind of fun. Get your mind out of the gutter. The visitor was a good friend from college, during which time we had a running joke about helping each other bleach a certain unmentionable body part notorious for getting soiled. You don’t like where this is going, do you? Yeah sorry, so much for leaving out the intimate stuff. Maybe I’m the one who needs to get his head out of the gutter.

So my buddy arrived, and naturally the first words out of his mouth were, “Hey man! I’m here for the bleaching.” Now, normally I would have gone with the joke and immediately simulated getting undressed while telling him I was ready for the procedure, but there were two problems: I couldn’t talk and I was already naked. So instead I shifted the sheet off my upper thigh, and then, after five solid minutes of tracing letters on his hand, I was able to convey that I was already naked and ready for the bleaching. “Bring on the bleach!” I said.

Ha hmm. Anyway, where was I going with that story again? Yes, right, I was naked for a year. But recently I started feeling better and I’m once again back to wearing clothes. I have discovered linen shorts, which are just about the comfiest things, besides pajamas, that I’ve ever worn. And I’ve found that my old tank tops from the gym are much easier to get on than a normal t-shirt or, say, a Tommy Bahama shirt with pink hibiscuses.

Overall, I must say, it’s wonderful to wear clothes again. Why? It feels sexy, of course.