I’m about to surprise EVERYONE.
Ready?

My optic nerve…..
Is………………….
Still. SWOLLEN.

After TWO doctor visits, it has been decided that the medication FAILED.
Failed miserably.
I am sad and elated at the same time.
That freaking medication was pure EVIL, but I really wanted it to work so that I could move along with my big life plans. I should have known better… but I was TRYING to be positive, and TRYING to have what is known as, “hope”. HA!

What a joke. No matter what my attitude is, the outcome is the same.
“Sorry Mrs. Nello. We just don’t know why you aren’t responding the medication. Let’s refer you to another doctor to make sure that we are even on the right path. (Are you kidding me right now? There may be a chance that I don’t even HAVE a pseudotumor??) I’ll give you a call when I have discussed your case with my colleague and at that point we’ll see what needs to be done.”
Awesome. Great. Fabulous.
I just love waiting.
And even more than that, I just looooooovee being a freak of nature.
I love it, I love it, I. Love. It.

I went off the evil medication two days ago and am starting to feel better. The nausea is fading, I no longer have to pee every two seconds, I am finally feeling “right” again, and the ugly “tingling” in my feet has subsided. It appears that the worsening of my RSD will be something I will get to deal with for who knows how long and I still am having issues getting to sleep, which is super annoying. But even more annoying than it taking about three hours to get to sleep every night? Ummmm, that would be that my vision is STILL getting worse. It is like looking out of disgustingly smudged eyeglasses. And it sucks. About a week ago, I gave up driving because I feel it is just no longer safe. I would never forgive myself if there was an accident while I was driving… especially if I had my kids with me. ~shudder~

So.
Needless to say, this stupid problem of mine has absolutely RUINED our summer.
Totally ruined it.
I feel so bad for my kids…

I have no idea when I will hear back from my doctor regarding this referral. I hope it is sooner than later… but you know, I have been on this road one to many times and I know it will be “later” that I hear. It will be “later” that I get an appointment with the new doctor. And it will be MUCH “later” that my “condition” will feel manageable. I may sound pessimistic, but I think I’m just being REAL about this.

Now I get to figure out how this new condition of mine is going to fit in my life.
How this is going to fit in my husband’s life.
How this is going to fit in my kids’ lives.
Because I don’t think this is going to go away anytime soon.

Let the fun begin.

Ahhhh.
The spinal headache ended about a week ago.
I have spent the last seven days attempting to get back all the energy that was drained out of my body during my seven-day-lay-flat-on-your-back-unless-you-want-your-head-to-friggin’-explode period.

As fun as those seven days were, I’m gonna go out on a limb and say that I am SO glad that it is OVER. School ended for me last Thursday and inspired a HUGE sigh of relief. I no longer have to worry about studying and going to class while also trying to recover from tests (ahem… spinal tap) and side effects from medication and my health condition in general.
So. I’ve decided that my doctors have until August 24th to get this all taken care of and straightened out. (August 24th is when I start the fall semester in which I am signed up for 15 no-nonsense-work-your-ass-off credit hours.) I have BIG plans (pharmacy school, anyone?) and have ZERO intention of letting a freaking pseudotumor get in my way. If RSD didn’t knock me out of the game, I’ll be damned if I let a stupid pseudotumor do that job.

I’ve also decided that I really do not like this whole pseudotumor-cerebriraman amplifier situation. The more I read, the more freaked out I become. All I want is information… but the more “information” (aka: internet articles) I come across the more I am freaked out. Now, I haven’t heard this from my doctors yet, but apparently, if the “information” (seriously, can you really trust the internet in matters like this?) is to be believed, if the medication does not work then I am facing having to get surgery to put some sort of shunt in my head to reduce the flow of spinal fluid to my brain. Ummmmm… brain surgery in any capacity? That would be no. No.No.NO. (See how I freak out?) I am trying to just wait until I talk to my doctors again and not flip out until they give me reason to…. sometimes it works, sometimes it doesn’t.

It is absolutely NOT helping that the medication that makes me pee like I’m ten thousand months pregnant doesn’t seem to be working. Oh, I ‘m getting all of the expected side effects (plus the fun unexpected side effect of the stupid medication actually making my RSD WORSE) but the vision in my right eye seems to be worsening, not getting better… Now, I am no doctor, but I’m thinking that this cannot be good. When this whole adventure started, I had a crescent-shaped haze at the very bottom of my vision… think like a quarter-moon kind of shape. Now I have like a HALF-MOON’s worth of haze at the bottom of the vision in my right eye. Umyeah.
If you’re thinking, “Wow. That would probably be sooooo annoying,” you would be dead.on.

Yes. I am all kinds of spooked about my vision worsening. Yes. I am all kinds of pissed off about my RSD getting worse because of this medication. I literally have not slept the night through in about two weeks because I get woken up by the “tingling sensation” in my feet. (Tingling sensation… yeah right. More like someone jabbing small knives into the bottom of my feet sensation.) My RSD foot is usually swollen to some degree now and is usually the color of red kool-aid. Basically, what I’m getting at is that I don’t want to take this medication if it’s not going to work. Because HELLO! My foot is killin’ me (worse than usual) and if it because of this medication that isn’t doing its job anyway… uh…. nothanks.

Monday, July 13th, is the day. The day the eye doctor gives me the verdict on whether or not the swelling in the optic nerve in my right eye has gone down at all. Despite the fact that I am 99.9% sure that my vision has worsened over the last few weeks, I am still hoping that he will tell me that the optic nerve is no longer swollen or no longer as swollen. I really, really want this medication to work… even though it is making my RSD worse. I do NOT want to get a shunt put into my head. That sounds painful, expensive, and like it would take a while to recover from. So. At this point I am just trying to will my optic nerve to calm the heck down and stop being swollen already. (I don’t know if my mind power is strong enough to make my body do what I want it to… but it’s worth a shot, right? RIGHT? ~on the edge of having a panic attack right now~)

Uhhh… Moving on to happier things.
Our fourth of July was fun! (Even though Simon got bit by a mosquito right by his eye and spent much of the fourth nursing his red and swollen eye…)
We started the fourth off by doing nothing for most of the day (which was awesome). Then we took the kids to the driving range for a few hours (family fun for all).
Then we moved on to go and check out the local fireworks scene.
We saw these:

Tried to take some family pictures while watching big fireworks:

But those didn’t really turn out (as usual) so we just watched more of these:

Alright. Nello.Out.
I am busy warding off a headache and the backlight from my laptop is doing me no favors at this point.