I tend to get excited about new (to me) treatment options.
How could one not?
This pill will help me retain fluid. That will be so helpful! I may not have to go to the bathroom 900 times a day! My blood pressure will finally increase!
Except… retaining water meant I ended up with uncomfortable bloating and severe migraine headaches that kept me confined to bed.
This injection will cause my red blood cell count to be higher- and since I’m anemic, that’s going to be so great because I will finally have enough blood to circulate through my system!
Except that getting shot in the rear with bee-sting-like intensity 3 times a week for 4 weeks is 1) painful 2) expense because my insurance didn’t cover it. Add in the fact that while I may have had more blood circulating, my iron levels plummeted, so I had to take high dose (liquid!) iron supplements that made my digestive system tie up in knots so badly that it triggered gastroparesis (literally paralysis of the gastric system) and I ended up only able to eat blended food for an entire year. Plus, once the injections stopped, so did the overzealous red blood cell production.
There have been other pills, other “lifestyle” changes that I have tried throughout the years, and let me tell you, I was excited about each and every one.
Well, ok, back up a minute, I was excited about what each and every one promised.
So, of course, I told everyone about it.
“I’m trying this new thing, and it’s supposed to help!” I proudly proclaimed.
“Yay for you!” my lovely support system replied.
Most of the time, the New Thing does/did help. It’s just that usually, it helps for approximately 5-10 days, and then stops.
It feels like this:
New Thing introduced.
Body is too confused (and let’s face it, slow) to figure out what’s happening.
New Thing does what it is supposed to. Happiness ensues. Phone calls are made, Facebook statuses and blog posts of joy are written.
Body catches on that New Thing is not going away anytime soon.
Body FLIPS THE FREAK OUT.
Body rejects New Thing.
New Thing is overpowered by side effects and triggered responses of Body.
New Thing is stopped.
Depending on how severe Body freaked out, return to Previous Normal might not be possible, and so New Thing #2, 3, 4, 5, 6 might need to be introduced to clean up the mess.
Or, Nic might just need to sit on the couch for a week watching TV shows on Netflix while waiting for Body to remember how to function on a slightly normal/manageable level.
New Normal achieved. Nic marches on.
I hope you see where I am going with this…my new beta blocker did not work out.
It’s really frustrating to be in it- to go through the hope-happiness-disappointment-frustration cycle yourself- but it’s also weird to see other people react to the situation.
It’s as if I am crying Wolf or something…
It’s as if I am crying Success.
Unlike the Little Boy who Cried Wolf (Not up-to-date on your nursery rhymes? Google it.), I do not cry Success for attention. I cry Success because for a moment I actually feel it, and I’m bursting with how good it feels, and I want to tell everyone how happy I am.
But when Success doesn’t last long, and a few months later I come back with some other New Thing and repeat the whole kit-and-kaboodle again, I can see how some people (not you, of course) might get a little tired of it.
Let me tell you something.
I’m never going to get tired of it.
The other Chronics you know, who go through a similar process, are never going to get tired of it.
Not because it’s a game and we’re trying to pull a fast one on unsuspecting support systems. We are not messing with you, promise.
It’s just that to us, each New Thing is so much more than just a new thing…
If we ever stop getting excited, if we ever stop talking about our process of progress-setback-progress, that is when we have a problem.
That’s when you know we’ve given up.
A lot of times, New Things bring a Louis Vuitton matching set of Baggage with them. A lot of times, it is not worth it to have one thing go right when it triggers everything else to go wrong. No one likes a Health Hydra (see previous post).
You may not get this.
You may not understand why the Chronic in front of you “gave up” so easily/quickly/etc.
This is the part where I politely pat you on the head, give you a cookie, and tell you that you don’t have to understand everything.
Each New Thing is a learning experience for a Chronic. Even if it didn’t go right, there is definitely something to be gained for having tried.
For instance, having tried this particular beta blocker, I now know that if I want to function (at all) then it is more important for my blood pressure to be regulated than for my heart rate to be low. I like functioning more than I like a quiet thoracic cavity, so I chose not to continue the beta blocker (which caused my blood pressure to tank after it had built up in my system- 85/50? Not happening).
That’s the other thing: I chose.
Sure, when you are a Baby Chronic, your parents are still in charge of your medical decisions, and so have some measure over what your treatment options will be.
But once you’re 18, it’s your turn.
You get to decide that you don’t want to “wait it out” or “see what happens”. You can say, “Nope, this is no good for me!” just as soon as you need to.
I am bummed (so, so, so bummed) that this particular New Thing did not produce results that were compatible with my system long-term. The shiny promise of it was so appealing! Plus, it’s a real inconvenience to be so life-interrupted. It took 2 weeks of taking it to know it wasn’t for me, and then 1 week to get it out of my system. In a few more days, I’m sure I will lament the loss of February as much as I lamented the speed at which January flew by.
But <stuff> happens sometimes.
It was better to try this out, see if it helped, and learn a couple of things than to not know at all.
And if that’s not a reason to cry “Success!” then I don’t know what is.