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.

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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 

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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.