Here’s to My Last Year as a Twenty-something

Here’s to My Last Year as a Twenty-something

I know some people hate their birthday. I'm not entirely sure why, but I think it has to do with societal pressure to celebrate in a meaningful, and often very public way. Because of this there seems to sometimes be an inevitable let down, at least for the people who become consumed by the pressure that society puts on them to have a big celebration for their birthday.

I've felt this pressure many times. I'm sure everyone has in some way, whether it's a friend telling you to have a big party and invite lots of people or just a milestone year like 21 or 30, begging to be etched in the lore of your social circle. Oh, and I'm sure the way Facebook celebrates birthdays doesn't help — soliciting everyone and their grandma to celebrate your "special day."

I don't want to get too cynical, or even analytical about it, but I often wonder if this pressure comes, at least partially, from the large, themed birthday parties that many people have during childhood. If you grow up having Disney-themed birthdays with dozens of kids all watching you blow out candles and tear through a table full of big gifts, then there will probably be pressure to duplicate those celebrations in various forms throughout your life.

This of course is just my opinion; I certainly don't want to discourage anyone from throwing their kids a Disney-themed birthday party. And the truth is I have never been one to hate my birthday (even though it's often 100 degrees outside). But as I've grown older my birthdays have become less climactic, which has suited me just fine, particularly since I became sick. When your body literally can't celebrate, all the societal norms and pressure to have a fun birthday go out the window. When your body won't allow you to go out drinking until four in the morning, or in my case, even out to dinner, birthdays become much, much smaller celebrations.

On my first birthday after becoming bedridden, for instance, I couldn't even sit up in bed. I couldn't speak or eat solid food, so my lovely mother and sister ordered my favorite take-out, added broth, puréed it, and gave it to me while I drank it through a straw. Honestly though, puréed gnocchi is pretty tasty. It was a small victory in a year of defeat.

That first birthday stuck in bed was a tough one — my toughest so far, mostly because I felt so miserable. But it was around that time that my health started to improve and it may have started, at least in my imagination, with wishing upon a star.

Every year around my birthday there is a meteor shower called the Perseids. A couple weeks before my birthday, I bought my mom a telescope for her birthday. I hadn't seen the sky in more than six months at that point so I decided to try out the telescope.

With all the house lights turned off I peered through the telescope with one eye, the other closed. I could feel the telescope's internal light as well as the illumination from the moon and stars burning my eye, creating lots of cognitive trouble. Little did I know that after looking through the telescope, the eye I had exposed to the moonlight would get swollen and feel like somebody gave me a black eye for a solid week afterward.

But I didn't care, I wanted to see the sky, I wanted to see a shooting star. And I did. I saw one. Can you guess what I wished for? (I can't tell you otherwise it won't come true, right? But if you think about the one thing that I want the most, I bet you'll guess it).

Then last year, while my wish hadn't completely come true, I made progress. I was able to sit-up in bed and whisper a bit, but I was still very sensitive to light (not nearly as much as the year before, however). I was determined to once again look at the stars, albeit without the telescope. So I stayed awake until midnight with the thick blankets I used to shield sunlight during the day peeled back to reveal the vast starry night. After about an hour of looking at the sky and not seeing a single shooting star I finally saw one. And it was a big one. It went streaming across the sky and felt so close I could almost grab it. In some ways it felt like looking at an organism moving under a microscope; I felt like a visitor peeking into an unfamiliar world full of wonder and awe.

I made a wish, and then, like a spooky omen, a bat flew into my room. That obviously wasn't my wish, but it was definitely a memorable experience.

Have you ever been trapped in a room with a bat? Not a baseball bat, an actual flying bat with wings, you know like Batman, but much uglier and probably with rabies and other transmittable diseases. It was absolutely terrifying. And if being trapped in a room with a frantic flying mammal wasn't bad enough, I lacked the physical ability to do what pretty much any person would do in such a situation: Run.

I was bedridden and still couldn't speak so yelling for help wasn't an option either, and to be honest I was confused and probably in shock; I wasn't initially sure what was flying around my room. I soon figured that not many things fly at night so it was probably a bat. Then it screeched at me and dove at my head and, well, then I definitely knew it was a bat.

Thankfully my wonderful caregiver, Chelsea, came into the room shortly after that and swatted the bat outside before it bit me, gave me rabies, and I turned into some rabid creature from The Walking Dead.

Luckily the bat wasn't a bad omen (knock on wood). And now another year has passed bringing me even closer to having my wish granted — the same wish I have asked for under a shooting star on my last two birthdays.

I don't know if I believe in birthday wishes being granted, but I do believe in wishing. There's no harm in wishing for good things to come. I have wished for my health to improve for such a long time, even before I became bedridden (as I'm sure all people with MECFS have). So I don't know if my health improving has anything to do with my birthday wishes, but there's no denying that I can speak short, quiet sentences; I can eat pretty much all food except caramel and salt water taffy (good thing I hate sugar), and I can even get out of bed. These are improvements I am grateful for; they are reasons to keep wishing for even better days to come.

While I still feel the pressure to do something memorable on August 12th, I have a feeling the thing I will remember most about my 29th birthday will not be anything I plan. The most lasting memories are unexpected, after all.

I don't know if a bat will fly into my room again (I sure hope not), or if I will be able to keep my wishing-upon-a-star streak alive for another year (maybe this time from the deck since I can go outside), or if someone will come soothe my loneliness and be my little spoon for the weekend (seriously, if you want to come snuggle with me just let me know), but whatever happens I'm looking forward to it and another year of life. So here's to my last year as a twenty-something!

Thanks for reading this post. If you want more (and I know you want more), please subscribe to my blog.

A Different Kind of Diabetes 

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.