A Different Kind of Diabetes 

*Disclaimer: the following is a post featuring my opinions and research I’ve done. I’m not a medical professional or any kind of professional. Well, I’m really good at blankly staring off in the distance. Does that count?

I recently came across an AP news report on IV “bars,” and how seemingly healthy people use them for a number of reasons. They interviewed one woman who goes in for an IV every time her Lyme disease symptoms flare up. She said it helps her to function while her symptoms are worse. Another person, a man I guessed to be in his late-twenties, said getting IV hydration cures his hangover — within 30 minutes it’s like he never went out partying the night before.

This story immediately resonated with me because I go out partying pretty much every night and can never kick my hangover the next day. Just joking. But seriously, it resonated with me for a couple reasons: (1.) because MECFS often makes me feel hungover, or much worse, if I don’t get IV hydration everyday, or at least twice a week, and the feeling is usually worse if I overexert myself. But also, the story resonated with me because (2.) I’ve been getting IV saline (and sometimes vitamins) for a year now and, within that time, I’ve gone from aphonic, eating through straws, and unable to elevate my body, to now consistently improving with every infusion.

I don’t want to come off as sanctimonious — pushing IV treatments on anyone. Everybody has a different body, and some people have different reactions to treatment, so whether you are healthy or have MECFS, Lyme disease, or another condition, IV hydration may not work for you. Over the last several months I have talked with people who have seen no benefit and people who have seen their health improve with IV therapy. I have rarely talked to people who have had a negative reaction, although I’m sure it happens all the time, especially with a more complex compound than simple saline.

Do Or Don’t Do It Yourself

One of the main arguments against IV hydration and nutrients is that infection can occur around the insertion site. I totally understand this concern — IVs are invasive after all, but that’s why a nurse should administer the IV and a doctor should prescribe it.

Oh, and this is probably a good time to mention that, although a needle is used to place the IV, what is actually set inside the vein is a tiny catheter tube which infuses the compound into your bloodstream.

Because I’ve been getting IV infusions for such a long time — and I need them and having a nurse come to the house is expensive — my mom and I have been trained to do them.

Having said that, I would never place my own IVs (or have anybody I don’t trust place them). Otherwise, I’m comfortable doing everything else IV related. Lately, I’ve been using a midline IV, a shorter version of a PICC line, which can be left in my arm for weeks. It certainly is convenient, but also feels kind of like having a twig stuck in your arm for a month. The nice part, however, is that it allows me to hook up to a liter bag of saline anytime I want.

It’s actually fairly simple, and if there wasn’t such risk involved, because it’s invasive, I would say anyone could run their own IV. But the truth is, any number of things can go wrong: from an infection at the IV insertion site to too much air getting in the tubing which runs from the bag of fluid to the IV. But thankfully none of these things have happened to me.

Proving The Placebo Effect Wrong

In the AP video there’s an interview with a doctor who seems to be adamant that the benefits of IV hydration are due to the placebo effect. Now, I realize what he said may have been taken out of context and he may have been referring to healthy people who can typically get adequate hydration by simply drinking water, but even so, I feel like an IV with saline and vitamins is more effective at treating hangovers or colds or whatever than just drinking water. I’ve had numerous people suggest I do the latter to save money, or just because the thought of an IV having such a profound salutary effect on my health seems impossible. In fact, my ex-doctor (yeah, he broke up with me) and his staff felt this way and seemed to suggest I might be dependent on the saline, and furthermore, that the effects were either temporary or all in my head. Now, I’m may not be a doctor, but I’m sorry, that’s complete bullshit. And let me tell you why….

First off, I was extremely reluctant to try IV hydration in the first place and my ex-doctor actually had to sell me on it. And once I got the IV it was excruciatingly painful. Still, I kept trying the infusions and after a couple weeks I started to improve. Now, a year later, I’m still kicking ass on the recovery train. Choo-choo!

Also, given my recovery, I think it’s fair to say my body is dependent on saline, and even if I was addicted to the IVs, so what? I’d much rather be addicted to saline than pain killers or anything else for that matter.

I do, however, want to clarify: I believe the placebo effect is real. I think some people experience relief from their symptoms thinking they are taking a beneficial treatment, even when they are not. But I think it’s important to, when talking about the placebo effect, consider the difference between feeling better and feeling cured. It is my opinion that if someone takes a placebo treatment and is cured, well, they must have something else going on, whether it’s hypochondria or attention-seeking. But simply feeling better while taking a placebo, which seems to be the most common occurrence, is more an indication of the tremendous power of the brain.

The Difference Between Healthy And Sick People Getting IVs

The aforementioned AP report focuses predominantly on healthy people getting IV hydration. I cannot speak for these people, or even relate much, because I haven’t been healthy in more than half a decade. But for someone like myself, it turns out there is an actual medical explanation for why IV hydration works and oral hydration doesn’t. It’s called diabetes insipidus, and according to UCSF, it is “a rare condition that occurs when the kidneys are unable to conserve water during the process of filtering blood.”

This condition is, of course, different than the diabetes related to blood sugar. Instead, “diabetes insipidus is caused by a lack of anti-diuretic hormone (ADH), also called vasopressin, which prevents dehydration, or the kidney’s inability to respond to ADH.”

This hormone allows the kidneys to keep water in the body. It is made in the hypothalamus area of the brain, and is stored in the pituitary gland.

I only recently came across this information, although my ex-doctor mentioned some of it while I was catatonic, so it didn’t really register in my mind. It’s nice to finally have a name to go with the condition, which I too was skeptical about at first. My nurse kept telling me that my urine looked incredibly diluted, which I thought was a good thing (as is the case for healthy people), but we both eventually concluded that it’s in fact a bad thing when you have DI because the body does not retain water, and instead quite literally (excuse me) pisses it away.

What I find so fascinating about DI is that the exact opposite applies to healthy people. But when I think about it, it’s only fitting that someone with a disease (MECFS) that goes against so many medical and health care norms also has such a paradoxical secondary condition.

*Thanks for reading! Please subscribe for more rambling.

How to Become Ambidextrous 

“It was a shock to have my life interrupted by a very real health problem. I’ve always taken great care of myself and I was pretty sure that was supposed to count for something.”

-Tippi Hedren

I’ve always been a righty. When I played baseball in high school, I batted and threw right handed. I always used my right hand to write, and pretty much anything else you can imagine I did right handed. But almost everything I tried to do with my left hand I was terrible at. Actually, not just terrible, I was clumsy and awkward and kind of resembled someone with full-body numbness trying to have good coordination. I remember playing basketball in middle school and trying to learn how to do a left handed lay-up. My coach might as well have asked me to drive blindfolded.

My struggle with all things left handed quickly turned into jealousy, and sometimes even disdain, for people who could more actively use their left hand. My jealousy appeared every time I saw a lefty hit a home run or finely chop vegetables, but my disdain grew every afternoon as I sat watching my chemistry teacher write her lecture notes on the overhead projector, which I desperately tried to copy down before she moved on. This was a challenge not because she was hasty, but rather because she was left handed and her forearm and shoulder blocked my view of everything she had written.

In these formative years I never thought I would develop good coordination with my left hand, and for the most part I was fine with it. But if, for some reason I did imagine becoming ambidextrous, I certainly never thought it would come as a byproduct of being sick. After all, how could a sick person possibly become ambidextrous? Learning new skills isn’t a top priority for us sick people.

Several months ago I started getting daily IV infusions and subsequently needed the placement of a peripheral IV every week. To give my veins a break I started switching arms. In turn, I would sometimes have the IV in my right arm. Because the IV was often placed in an awkward part of my arm — essentially anywhere that a vein is closest to the surface and most visible without any valves in the way — I often had limited use of that particular arm. Sometimes I only bent my arm a few times a day so the joint wouldn’t lock up and so I wouldn’t disturb the IV, risking a clot or dislodging the catheter. When the IV was in my right arm, for example, it meant I had to do pretty much everything with my left arm. In fact, many of the posts on this blog were not only written on a small iPhone with a greyscale screen, they were done so using only my left hand. Hey, where’s my award? I know, I know, I would try out for America’s Got Talent, but I think there’s a verbal aspect to that gig I’m just not quite up for yet.

Anyway. I recently found an app that lets users write handwritten cards on a smartphone. Then the company prints and mails the card to the recipient. I know, why not just grab a pen and write it myself? Well, because I have a lot of post-exertion exhaustion and pain, the weight of the pen and energy used to craft words with it, make handwriting impossible for me at the moment. So I’m thankful for the app. But still, it’s not without difficult, especially when I have an IV in my right arm.

The other day, for instance, I started to write a card and realized I had to use my left hand. To my surprise, I wrote fairly well. Okay, that’s a lie. When I say “fairly well,” I really mean a five year old could still write better than me. Nevertheless I’m impressed with how I’ve become somewhat ambidextrous. It’s something I never would have imagined prior to getting sick. So I guess that’s something.

*Have you ordered your “Show M.E. The Money” shirt or hoodie yet? There are all kinds of cool colors, there’s unisex and women’s shirts. The profits are being split — half go to the Blue Ribbon Foundation and half go to pay my medical bills. We’re a third of the way to meeting our goal, so please buy as many as you can. They are great for raising MECFS awareness.

Want A Sexy PICC? 

Did I scare you? Sorry. Despite what the title of this post suggests and based on some of my more explicit stories, you may have thought, “Oh boy, this guy is gonna post a photo of his junk for the entire Internet to see.” If you did think such a thing, well, I guess I’m curious why you’re reading this post and didn’t immediately disregard it. But hey, for the sake of our friendship (and my readership), let’s just pretend you knew I was joking — let’s keep it moving, shall we?

Ha, okay, right, so you saw right through my shameful play on words; you obviously knew the title had nothing to do with an explicit photo of me. But before I explain what the hell a “sexy “PICC” is, let’s back it up for a minute.

In April I was unbelievably sick — unable to chew food, talk, sit-up, or tolerate light. I was essentially waiting to die. Then my doctor ordered the placement of a foot-long IV catheter starting in my arm and running to within a few millimeters of my heart. The IV is called a peripherally inserted central catheter, or PICC for short, and let me tell you, it is anything but sexy. I’m sure there’s a good reason and circumstance for placing a vein-dwelling catheter so close to the heart, but the thought of it still freaks me out. A LOT! I find it especially terrifying because I wasn’t told that the PICC sits so close to the heart until the procedure was over.

A few weeks ago I wrote about the PICC placement and how excruciatingly painful it was for three weeks before I took it out. The pain was unrelenting, shooting up my arm and into my chest. It didn’t stop until I took the PICC out, which itself was quite the experience. There’s nothing like seeing a foot-long tube being pulled out of your arm. I just kept thinking, “Wow, is my arm really that long?” Of course it is, but still.

For several months following the PICC, a nurse made bi-weekly trips to my house to place a peripheral IV in my forearm. To my relief, the peripheral IV was only an inch-long. Eventually my arms started to look rather suspicious, like I had a serious heroine addiction or had taken my last acupuncture appointment a little too far. So after my veins stopped showing up and I got tired of looking like someone’s flesh-covered voodoo doll, I was left with no choice but to get another PICC, or so I thought. After doing some investigating, I found and subsequently decided to go with a mid-line IV. Instead of spanning an entire foot to my heart, it runs a few centimeters up the arm and stops around the armpit.

Last week a nurse came to my house to place the IV and hopefully end my stint as a human pin cushion. Coincidentally, the same nurse placed my PICC back in April. The only difference this time was I got to see his face. In April my eyes were so sensitive to light I had to keep them covered the entire time he was here. At the time I only knew him by his voice which my ignorance led me to think he was a tall, lanky white guy. And in my defense, it doesn’t help that his name is Dean. So last week, when a short Filipino-American man of middle-age walked into my room, I couldn’t help but wonder how the hell he just so happened to have the same voice and name as the lanky, white guy who came last time. Okay, maybe I wasn’t that naive but I was definitely confused. Dean also seemed confused.

“You’re not the same guy I saw back in April,” he said as we seemed to hold a relatively normal conversation, not one involving a severely ill patient who could not talk a few months prior. “Look at you, you’re sitting up, talking, and you have the blinds open. There’s daylight in here. None of this was happening last time. What has helped you so much?”

“Saline,” I replied.

“Really? That’s it?”

“Yeah. It’s been the biggest help.”

“Okay then, well let’s get you an IV so you can keep getting better,” Dean said, setting up a sterile drape on my arm.

Then he moved my arm laterally to a 45-degree angle with my torso.

“Whoa! Look at that! You couldn’t even move your arm an inch away from your body last time, remember?”

I nodded, affirming his observation. Then I braced as he stuck my left bicep with a needle and proceeded to use a bunch of other tools I had never seen before. 10 minutes later I was hooked up to a saline drip and had a mid-line IV to conceivably last me several weeks.

It has been a week since the mid-line placement. I barely feel it anymore and although it gives me some trouble at night when I’m trying to sleep, it has been much better than the not-so-sexy PICC I had in April. In my opinion, the difference has been two things: the use of a shorter IV catheter in my vein, and a decrease in my body’s sensitivity, which is undoubtedly thanks to my improved health. Six months ago a hug felt like being crammed into a trash compactor, so you can imagine how a needle poke and catheter shoved in my vein felt. Now, my body can handle much more pain and pressure. For that, and all my health improvements, I am so incredibly grateful.

*I’m excited to say I recently had an essay published by Men’s Journal. Take a look.

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