I went to the Doctor yesterday afternoon and….
My optic nerves are finally BACK TO NORMAL!

YAY! YAY! YAY!

I didn’t see that one coming. Not.At.All.
Because I still see all the nasty haze in my vision.
Yep. All of it.
And the Doctor has zero clue if it will go away.
He says that it “might” but that it “might” be “a while”…
Or… the damage “might” be permanent.

And.
This also means that the EVIL medication actually worked.
EW.
I HATE the EVIL medication. And I was really, really looking forward to flushing the remainder of the bottle straight down to Hades… but, alas, that is not going to happen.
However, I do get to “taper down a bit”. Apparently this means that I get to take a little less of the EVIL than I have been and see how I do over the next three months. Hmmm….

Whatever. I’ll take it.
And I guess I’ll take the diagnosis of Pseudotumor and wear it proudly, even though it totally sounds fake.
Because. The medication worked! (Holy CRAP! Something worked on me!) I am NOT going to go slowly blind! I am ELATED. And I only care a little bit if the vision damage is permanent. Just as long and the damage has STOPPED. Just as long as the headaches have stopped and the balance issues have stopped. I’ll take the haze and the weird sounding diagnosis…. As long as it really is over. As long as I really don’t have to worry about this anymore.

Because.
Didn’t you know?
I am SO DONE with ALL the health stuff.
And today was SO great to be able to check one off of the list.

Now…. If only this relapse of RSD would just go away I would be…..
Well, I would be just this side of “normal”…
Which would be NEW.

**I am so happy to have normal optic nerves again!**
YAY for treatable Pseudotumor!

This is NOT a joke.
I started a new runners program today.
…..
I KNOW!!
Are you up off the floor yet?

I never thought that I’d see the day either, but here it is.
Today, on January the eleventh in the year two thousand and ten, I, Nello, also known to some as Kelly, started a beginners running program with the aim of getting my poor, broken down body into as good of shape as I can get it in to. Friends, this is NOT about losing weight. Mostly this is about showing myself that despite the fact that my body continues to fail me, that I still can do some things; and that includes keeping (or, in my case, starting to get) my body healthy. I’m getting older and I don’t want to wake up one day and wish I would have done this sooner.

I also happen to have a husband who is positively addicted to running. He runs at least three to four days a week and I don’t even want to tell you how many miles he puts in…. because it’s a lot. The man runs so much that he has to buy new running shoes every quarter because apparently you can only run so many miles on one pair of shoes. Did you know that? I had zero CLUE about that fact… I only thought that was applicable to tires for crying out loud! I had no idea that it applied to the rubber soles on your feet as well. Tyson also subscribes to Runners World. So every time I enter the bathroom I see that magazine glaring at me in the reading rack. I even read it every once in a while. (~gasp~) Well, after four or five years of watching my husband fall in love with running, and after hearing him suggest to me ever so politely (many times) that I try to take up running myself just to see how it made me feel, I’ve decided to give it a go. ~shock~

About two months ago I asked Tyson to find me a beginners program, something easy, something “Nello friendly”. If you’ve read my blog for any length of time you know that I have RSD (CRPS) and you know that it afflicts my right foot. You also know it causes me much pain, BURNING pain, and that there are days that I cannot walk. RSD also notoriously causes swelling and nasty color change, all without a cure and all without a known cause. All that is known of RSD is that it is a neurological disease that affects the nerves (in my case, it is the S1 nerve) and causes the afflicted nerve(s) to “misfire” and wreak all of the havoc that I have just previously described. I have had RSD since November-ish of 2006 and am at this point considered “stable”. I still have bad days, but they are not that frequent and over the years I have learned many ways in which to deal with the every day pain of it all.

I just gave you the short version of my RSD story, and now you know why I needed a running program that was “Nello friendly”. I hate the BURNING pain of RSD and I try really hard not to trigger it. The other reason I need a “Nello friendly” program is because of a recent health problem that involves the swelling of both of my optic nerves. The Doctors I am currently seeing think I have a pseudotumor, but so far the medication they have given me to treat said pseudotumor hasn’t worked. Whatever is going on, pseudotumor or not, I am losing my vision in both eyes (but much more rapidly in my right eye), I am getting literally blinding headaches, and I am having major balance problems (people and walls keeping running into me a lot lately).

Ha!hahahahaha! I just gave you the short version of my papilledema/pseudotumor problems….. and I am laughing! Because I went back and read those last two paragraphs and realized that I have every reason in the world NOT to do this stupid running program! What a JOKE! Runners World would get either a good laugh out of my story (”Running is not for you sister… Swimming is more up your alley! Or water-aerobics!”) or they would consider using it as a cliche “anyone can do it” inspirational pieces. (That is, if I actually saw this thing through…) Can’t you just see it? The Full-Time Mother/Student with RSD and Papilledema Who Decided to Lace Up Her Trainers and Leave Her Incurable Health Troubles Behind Her. To me, this is soooo funny. So funny that this is me, that this is MY life. But I know, to a few others, this would be like one of those inspirational posters people put up in their cubicles at work…. ~shudder~ Well, whatever…. Enough with my weird inner thoughts. Moving on to what I came on here to tell you.

The program I’m doing is an eight week program, (Tyson found the program at Runners World if you care to join in on my fun) at the end of which I will, in theory, be running thirty minutes straight. Today, Day ONE, I ran one minute, walked two minutes, and repeated that sequence ten times. So I actually exercised for thirty minutes straight and ended up running/walking two miles just because of the pace that I kept. The great thing about this program is that you go at your own pace AND you GET to walk!! I know the walking gets phased out, but you work up to that part and I like it.

As far as how my RSD did with it, I thought it went ok. About half way through the workout, the BURN (do you like the all caps for “BURN” whenever I talk about RSD pain?… didja even notice?) began, but it wasn’t bad enough to stop me or even to make me want to stop. And, so far I haven’t had any residual pain because of the workout and I take this to be a very good sign. As far as how my swollen optic nerves did… lets just say that the balance issues were a definite problem. It’s a good thing that our treadmill has the side-rails to hang onto because without those I would have fallen off. And I am not exaggerating. I would have fallen sideways off the side of that thing within the first two minutes. I just have no balance. If I didn’t hang on I ended up walking on my out-step (not even sure if that is a real term or not…) and then would get all wobbly. You see, I haven’t had these “severe” balance problems long enough to remember that every now and again I need to hang on to stuff in order to stay upright. Ugh. So.Annoying. Anyway… Day TWO, tomorrow, is just a 30 minute walk which I am very much looking forward to.
My plan is to keep the blog updated with my progress. This is a big deal to me and I really hope my body is up for the task because I’ve got big plans.

The big plan?
The big plan is this:
If I can stick this out, and get through these eight weeks, and get to the point where I can run for thirty minutes straight, my plan is to run in one of the RSD half or full Marathons that no one ever hears about because RSD is just not very well known. I’m going to track down the next RSD Marathon and I’m going to RUN it (either half or all of it, depending on where I’m at and what my body will let me do at the time). I’m going to run the WHOLE freaking thing and that will be my way of really, truly telling RSD to go straight down to Hell, right down where it belongs.
I’m pretty sure I’m ready. I know I’m more than ready to be rid of RSD and since that is impossible, this is my next best option; to figuratively kick it to the curb. And if I can run any distance longer than a meter, then, really, I’ll have done just that in my opinion.
I feel ready…. I just hope my body (most importantly my foot) is ready!
Wish me luck. And if you want, stick around to watch to potential train wreck!

Oh! And Happy Belated Holidays!

I laugh at the title of my last post.
I just read it, and I laugh.
Ok… I also cry a little bit, too.
I should hope that the reason is obvious why there would be a cry mixed in with an evil, bitter, sarcastic laugh.

I went to the Doctor today.
And he told me that my optic nerves are still very much swollen.

So. You want to know what I feel like right now?
I seriously feel like someone ripped all the hope I had right out through the front of my chest, slammed it to the floor and then did a dance on top of it…. a bad dance. All while I was watching helplessly, unable to do anything about it.

I hate living with this and more than that I hate that this isn’t the only thing with my health that cannot be fixed. I feel really jobbed right now… totally screwed over. I feel very much like I must have done something really super bad to deserve this business.
However, after I’m done having serious feelings for a minute, I switch gears and turn to my comforting, sarcastic, snarky feelings. (Cuz those are more fun.) Observe:
This is like the sickest joke ever. It’s like someone/something is controlling my life from afar and got bored.
It probably thought, “Hmm… let’s see how she does with a broken foot for 16 weeks. Well, she got through that ok… so let’s give her a good dose of RSD and see what happens then. Ha!hahaha! I think we got her. Look at how horrible she’ss doing! This is great! So funny! Oh.Wait…. looks like she’s making some sort of comeback. Hmmmm. What to do now….. Ohp! I’ve got it! Let’s very slowly, with a little bit of pain, take away her vision. This ought to be a GREAT show.”
And I’m sure it is.

Yeah. I’m pretty sure that is happening because I have no other explanation.
I refuse to believe that God would continually “test” me in this manner.
I also refuse to believe that my body really malfunctions in this way. If I believed that, I would really not be looking forward to growing old, I can tell you that…
So it stands to reason, well, MY reason, that this is all being done by some sadistic being that has some sort of control over what happens in my life. And I HATE this being. If I ever found this being that is making this happen to me, I would throw IT on the floor and do my own little dance.

~sigh~
Seriously, though. I have no clue why this is.
I just know I want it to stop.
I really don’t like watching my vision slowly deteriorate.
It is so depressing. And it is becoming harder and harder to fight the sadness and the fear.

I was really hoping for one of those cliche “Christmas miracles”. So stupid. So foolish…
But, I mean, those do happen, don’t they?
I don’t know, maybe they don’t…
I just know that it didn’t happen for me.
And I also know that I am SO angry at myself for letting false-hope get the better of me.
I know better.
I lived the type of life that I really do KNOW better.
Lesson learned. Again.

Oh, I’ll get over these feelings, I’m sure.
I have always found a way before, and I’ll do it again.
I’ll be sure to post again when I’m not so crazy…. it may not be for a while.

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.

There I was.
Weeping on the bed.
Because it hurts.
And I am DONE with the spinal headache.

Tyson looks at me and asks, “What do you need, Lady?”

“I need you to kill me. Kill me Jerry.” I smile at our Seinfeld joke. (Ah. Seinfeld was hilarious, wasn’t it?)

“How do you want me to do it?”

“Just make it fast.”

“Alright. How about I just flick you in the the forehead to death? You know… just flick you on your forehead until you die….”

I laugh. Because I find that scene in my mind to be really, really funny.

Man. I hate it when he makes me laugh away my cries…..
(And when I say “hate”, I really mean that this is just one more thing for me to confess that he does right…)

~Wanna see what my view has been like for the last SIX FREAKING days? (I knew you would… that’s why I took a photo for all to share in my woe.)