Snow

Today it is snowing.

There is something frustrating about driving nearly the whole way home without pressing the accelerator.

Tomorrow will be a hard day at work. Both the teacher I work with and the other aide will be out and I will be all alone and so so lonely. Luckily it is only a half day but I am still holding out for a snow day. If there isn't a snow day I will cry. Is it bad that I am actually hoping for double vision so I have to go to the hospital and get an LP?

This cold is kicking my ass. I am crabby as all hell.

I am also apparently not bright. I just stopped in the middle of my blog entry for reasons that I cannot remember and failed to finish it. My head is not smart.

Which reminds me, I didn't take my pill tonight.

I need a keeper.

My first cold

I am currently experiencing my first post diagnosis cold. I feel like complete shit. I think my head might explode. I am sure it is a sinus headache and not a pressure headache, but since I pretty much have a constant headache anyway so this just piles on.

My eyes have also been kind of weird. They feel swollen and I don't know if it's pressure or the cold. I had a little bout of visual snow today which was interesting and new.

I need to sleep.

Remiss if we didn't talk about Remission

So apparently this shit can go away.

Just like everything else involving IIH no one knows how or why or when or whether you will stay in remission. Sometimes it goes away after initial treatment. Sometimes it goes away randomly. Sometimes it comes back.

I am annoyed about other things today and my heart really isn't in this.

I apologize.

<3

My feets are cold

I failed at biking today again. I had terrible cramps this morning. Absolutely terrible. I am a failure.

On the plus side I got this picture from my grandpa yesterday... That is my brother. He used to be a pretty cool guy. I wonder what happened to him.

My medicine schedule is all off today. I took it late this morning because the dogs actually let me sleep in and now I don't know whether to take it at the normal time today or to take it a little later. On the brighter side I feel better than I have in a few days. I think it is because my period finally started which apparently is not uncommon with IH. I had the worst neck ache Friday and Saturday that ended up as a headache at the base of my skull. I was also luckily. Then today I feel fine (minus the worst cramps ever conceived).

I was a pretty cool chick too.

Downton Abbey is on. I think I might want to pee myself I am so excited. I had no clue that the new season started today.

There is only one problem, the dogs need to go out and there aren't any commercials on PBS.

I Fail at Resolving

I broke not one but two resolutions yesterday. I did not blog and I did not bike.

I intended to do both but I was thwarted by those lovely fleece sheets that seem to suck all motivation from my body. I was laying in bed reading and waiting for prime time television to come on so I would have something to watch while I biked. I looked at the clock and it said 6:55. I figured I'd close my eyes for 5 minutes and then get moving. I woke up at 10. I proceeded to read for an hour and then went back to bed and slept until 7 am.

Maybe I blogged and biked in my dreams. To be quite honest I can't remember.

Pain in the Neck

Cervical Spine and the spinal nerves that might be hurting me. (image credit)

No, no I am not talking about the kiddos!

My biggest complaint about IIH is the neck pain. Often times when I get the big head feeling it will be accompanied by a stiff and sore neck. Before I started treatment I would say it was probably the worst pain I have ever experienced and I have had kidney stones so that's saying something.

It is a documented symptom of IH so I have been wondering why it happens. I finally put together enough motivation to research it. It is not caused by infection. My CSF has been tested for all types and it is squeaky clean, as is should be in a patient with IH. It is theorized (no one knows for sure of course because no one will bother to research) that the pressure causes the spinal nerve sheaths to stretch so much that they exit the spine and actually enter the muscle. Ouch.

I actually thought for about two weeks before the double vision started that I had pulled a muscle in my neck. I never thought to go to the doctor because who goes to the doctor for a pulled neck muscle? I even saw somewhere that they can take over a month to heal so I wasn't really worried about it. Turns out I should have been. It was the first indicator that my ICP was dangerously high. Secretly I felt like something was really wrong. You get that bone deep feeling where your body tries to tell you, but you ignore it because you get the same feeling other times and it's nothing. Like the time I got a rash the night the President announced we killed Osama Bin Laden and I was convinced he was going to come on and talk about biological warfare and I was showing the first symptoms but in reality I was just allergic to the antibiotic I was taking. I felt like something was really wrong that time too and it totally wasn't so forgive me if I occasionally do not trust my own body.

Oh well, all's well that ends well right?

Today is MY Day!

Soooo... We have a day! Rare Disease Day. Now, I know it is not a day for people with IH but it IS a day for people like me with rare diseases that don't get the attention needed.

IHRF got my registry registration packet. They will now contact my doctors to get all of my info and they will add me to the registry and I will help get the IHRF one step closer to more grant money and interested researchers for the IHRF. Did I mention you could donate?

Second day back at work and it is already easier. It helps that the Stinker was absolutely adorable today. As she was walking into PE she looked at the two PE teachers and said, "It's my boyfriends!" Come on. That is adorable.

Back to Work I Go

I am exhausted.

I only rode my bike for 15 minutes today. I feel like a failure.

It was good to see the Stinker. I missed her. Her little face is just so cute.

I failed to drink enough water today which lead to the acetazolamide causing dehydration which lead to a headache which has still not gone away.

I think it is time to snuggle up in the fleece sheets.

Fleece Sheets

This blog post is dedicated to my mother who bought my fleece sheets today. It is like sleeping on a cloud.

If you have the chance to sleep on fleece sheets take it. Sleep on them. Preferably with a small beagle dog snuggling up against your stomach. You will never want to leave.

Some days you have to celebrate the little things.

New Year and Hope

I have made resolutions. I never make resolutions. This year there are things I NEED to change so I will make resolutions and I will accomplish the shit out of them.

1. Ride my bike everyday.
2. Write a blog post every day.
3. Continue to tell anyone and everyone I meet about IIH.
4. Plan a walk to raise money for IIH.
5. Be positive even when I feel like shit.
6. Be as diligent as possible in monitoring my condition.
7. Appreciate each good day I have and enjoy it to the fullest.
8. Love myself and don't get depressed because of new limitations.

I think that is enough to start with. 2012, I am going to kick your ass.