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!

Have I ever told you how much I LOVE snow days?
No?
Oh, YES! I Have.

Well, today was a snow day and it couldn’t have come at a better time because I have been feeling like crap for days now.
In fact, I missed my run/walk yesterday because of the sheer awesomeness of the current Nello Pain Factor. (Ohyeah. The Nello Pain Factor. It’s real. And it’s real awesomely bad sometimes.) Yes. I was absolutely horrified that I missed day 10… but I made up for it today by trading what was supposed to be my beloved walk-only day for the run/walk that I missed yesterday. About forty-five minutes ago I finished my run/walk in which I, KellyNelloSometimesCalledJello, actually ran three minute intervals while only walking one minute in between….. and made it. Yep. I did it. With minimal pain.

At the end of the run, I ended up with some minor swelling and an angry red foot… the usual. But, also, something new. I also had some weird radiating tingling going up the entire length of my right leg. It was like electric pulses going from my foot and traveling up my leg. I blame the run AND the new medication that I’ve been on since the Doctors told me that my optic nerves were still swollen. (Said medication is wreaking absolute HAVOC on my life, by the way. HAVOC, I tell you! HAVOC! My RSD foot is constantly burning and tingling. CONSTANT.LY. I am NO LONGER SLEEPING at night. Yes. No sleep at night for Nello. And I feel as if I am going crazy. Yep. Kah.RAZY. in the head.)

Um, anyway….
The run/walk, other than the missed day yesterday, is going ok.
In fact, the run/walk is going sooo ok, that today on the mill I actually had other thoughts than, “when is this going to be over?”
Basically, I found myself describing, to myself, what I must look like to others while I run.

Here’s what I came up with.
Basically, if you wanna picture me running, all you have to do is get ready to laugh (seriously, it’s gotta look really funny), picture a semi-loverly lady with a tomato-red face that has an expression of pain on it, now add to that scene with the semi-loverly lady that she drags her right foot almost imperceptibly at all times (you really do have to look for it, but it’s there), and then, finally, add that she looks like an extremely drunk girl trying to run on a treadmill (you know… because of my balance problems on account of the whole swollen optic nerve drama).

Seriously.
A drunk chick trying to run on a treadmill.
What could be funnier than that scene?
I can totally see it. It’s all there… right there in my head.

So, I’m, like, running along, running along, and then, “WHOA! WHERE did that sidebar of the stupid treadmill come from? It came outta nowhere, I tell ya. Whoa. There’s the other one! Maybe I should hold onto one of ‘em for a while just to make sure I stay straight…… Yes. Hold on. That’s the ticket. Close eyes. Maybe the room will stop spinning, too. Breathe. Breathe.”

Yep. Drunk Nello on the Mill.
Not much that’s funnier.
But whatever. I move forward anyway, laughing laughing the whole time because what else can I do? I mean, it is pretty hilarious to watch.

When I went back and re-read what I wrote, I found that it read pretty pathetically, but I didn’t mean it that way, really. I do get through fairly fine, I really do. My obstacles are more frustrating than anything else and they get me mad, NOT sad. The only time I ever get sad about my optic nerves anymore is at night when I can’t sleep because of the new medication. And I figure that the only reason I’m sad is because I’m too tired to keep the stupid tears inside my eyes. Anyway… I really do want to make it clear that these obstacles make me frustrated and pissed off. But sad and sorry for myself? Ummmm….. Hardly.

**UPDATED***
Do you remember the SNL version of Drunk-Girl?

*You’re gonna have to click on this video to see it, aparently.*

THAT character is what I had in mind when I pictured a drunk-girl attempting to run on a treadmill. Seriously. I know I look exactly the way Drunk-Girl would have looked would she ever have attempted to portray that fete in an SNL skit. I would have LOVED to see that skit…

Anyway.
Now you see what my sick little mind saw when I imagined Drunk-Girl on the Mill….. if you used your imagination, that is.

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.

So I had my doctor appointment.
Finally.
And surprise, surprise, it was not near as bad as I thought it would be.
Shocking, I know.
I still can’t quite believe it myself.

Long story short, now both of my optic nerves are swollen. The right one is still way worse than the left and now I’m facing damage to both eyes if this goes on much longer. Awesome, huh? I have also lost even more peripheral vision in my right eye… That is always a fun thing to see. And that news sure didn’t make me cry, either. (Hopefully you’re picking up the sarcasm here…)
However, this doctor thinks he knows the reason for my intra-cranial hypertension. (YAY!)

He thinks it is a MAJORLY HORRIBLE side-effect from a medication that I’ve been taking for about two years. So the first order of business is to stop the medication (already done) and wait a month. Then at that point I go back to my eye doctor to see if the nerves are still swollen. If they are still swollen, then obviously it was not the medication that was the problem and we go back to square one. (Boooo!) If, however, they are no longer swollen, then YAY! I’m basically done. The only down-side to that scenario is that it won’t be known if the damage already inflicted on my vision will be permanent, or not, until after the swelling is gone. Nobody is even willing to venture a guess or an estimate of what my chances are in regaining my peripheral vision. That doesn’t make me feel that great… but I still have a lot of hope. Because if it is the medication, then at least no more damage can be done and this will finally END! That, my friends, would make me very, very happy.

So that is the story.
Just one more month of waiting and I think it’s going to go by real fast, too.
Because I also happen to have to just one more month of school. So I will be busy busy with hopefully no time to stress and worry about whether or not my optic nerves are cooperating.

By the way… I know some of you were wondering.
That test I could have sworn I failed?
Yeah. I didn’t actually fail. I only passed by one mere percentage point.
Yep. I got a wonderful score of 60%.
I was so proud of myself that I threw a party.

Long time, once again, between blog updates.
Oh well. I think at this point, it is expected.

So.
The news.
My appointment with the specialist is not until November 17th.
This neurologist better be good because WHOA.
This appointment was made in AUGUST, people.
And in the meantime, I am still slowly going blind in my right eye.
Fun, fun for me and mine.
Except that recently I’ve started getting some horrific headaches that I believe are related to my swollen optic nerve. (I think this because during the headaches I go all the way blind in my right eye until the headache lifts.) AND. (as if there should be an “and” in this situation…) The vision in my eye is still slowly, but annoyingly, getting worse with each passing week.
And let me tell you. It makes me soooo incredibly happy when I wake up in the morning with more haze in my vision than when I went to sleep the previous night. Yep. So.Happy.Am.I.

However.
There are days when I don’t have time to think about my eye and all its problems. (~gasp~)
School is keeping me more than busy and when I’m not doing school, I play my Mom role.
My children continue to keep me on my toes as they are getting bigger and more vocal in their protestations of my many shortcomings. Helene in particular has been really, REALLY funny lately.

The girl is in Kindergarten. And she LOVES school and anything to do with school.
But one day, she got into some trouble.
The first time, EVER, that we have gotten a complaint regarding her behavior in a school environment.

Apparently she and her three girlfriends were being way too loud in the bathroom one afternoon. They were laughing and screaming (no doubt the high-pitched little girl screams that we all know and love) and generally causing a bunch of ruckus together. The noise earned her a bad behavior note on her daily note home. When confronted about the situation she became very somber and repeated almost word-for-word her teacher’s account of the incident. I had to fight back laughter during her recitation. I asked her why they were being loud. And she promptly explained that one of her friends was being really funny and that they were just laughing at the silliness. I asked what was so funny. Well, her friend had kicked her leg up in the air and her shoe came flying off. In the bathroom. (She couldn’t help laughing while telling me what happened… so funny.) And, of course, to a passel of five year old girls, this was the funniest thing in the world. And since I myself thought this was really funny, I was fighting back my own laughter once again.

So. I did what I had to do.
I let her off easy.
All I managed to get out was to keep it down next time.
Then I had to remove myself from the situation in order to laugh my self silly.

I am so grateful for those moments.
They stay with me when I get really down (which is often).
And they make me smile when I don’t want to smile.
Thank Heaven for my family.
They save me more than they will ever know.

I usually console myself at the beginning of any major health problem that I will get used to it in time. I tell myself over and over again that it won’t be long and I will be living my life as if this new health problem were always a part of me. This strategy is not the best, but it works on some days.
Well, lately it is working less and less.
So that means sadness and helplessness envelop me more often than not.
And I am plagued more and more about the WHY’s.
And after the sad passes, it turns to resentment. Resentment of a life that is made harder than I believe it should be. Resentment of a life that is guided by things beyond my control. Resentment that my children are now old enough to understand and to remember this awful, awful time of uncertainty and fear. They know that there is something wrong with my eye. They know that I am too often in bed with a pillow over my face because of these new headaches. And they are starting to pray on their own that Mommy’s eye will get better.

If there was one redeeming quality about the worst beginning parts of my on-going RSD fiasco, I would say that it is that my kids will not remember the majority of it, if they remember it at all. I appreciate their concern for me and how cute they are when they pray about my eye. But it breaks my heart just as much as it makes my heart swell with happiness when Helene or Simon comes to my room, gives me an unsolicited hug, and tells my eye to feel better soon. Helene comes to my bedside when I am prostrate with a literally blinding headache to check on me. She’ll put her hand on my forehead and talks to me the way I talk to her when she is sick. So cute. Yet, to me, so sad. At this age, for sure, she should not feel compelled to take care of me. It rips my heart apart to even think about it.

But I know, that for the most part, this is all unavoidable and that the best needs to be made of this unfortunate situation. Though things are hard, I still smile everyday because I have three people in my life that make me unavoidably happy. I am grateful that Tyson and I are in school and find amazing peace in knowing that we are doing with our life exactly what we should be doing with it. I still get to wait a while longer to try and find out just WHAT is making my optic nerve swell, but how grateful I am that in the meantime I have much to take up my time. November 17th has been a long time coming. But I know that before I blink again it will be time to make the three hour trip down to the specialist.

Hopefully between now I then I will find less and less resentment, anger, and sadness.
I would like more peace and contentment, please.
Thanksbye.