Independence

Yesterday was the 4th of July.

That is a day to celebrate independence.

Yesterday felt weird. It was the first day in what I am sure will be a string of building new traditions. Which, although liberating, is strange. And the 4th was always a big deal. The biggest deal of all of the holidays. And I have a confession.

I HATE the 4th of July.

I think the parade is boring and the fireworks stink.

There, that is MY declaration of independence.

But yesterday was ok. Too hot to really do anything so it was quiet and involved a nice long nap and sadly a terrible headache. The first really terrible headache. Which I have been nervous about. I should have known better. I was tucked on the couch and told not to move. I was kissed on the forehead and asked if anything could be done. I was told that being taken care of was his most important job. : ) I nearly cried.

And I got to thinking. About IIH and the role it played in the demise. I started to picture myself reading this blog and panicking as I wondered if that would be me and MY marriage and so I have decided to delve into it just a little bit. Just enough to let potential caregivers of someone with IIH know what it is like and what I want when I feel like crap.

IIH is frustrating for everyone. When you love someone and they are in pain your first response is to fix. Pills, ice, band-aids; anything to make it better. That is impossible with IIH. The thing you have to remember is that you can't feel their pain. And therefore you can't judge it. That was one of the mistakes that was made. It was by far not the worst mistake or the only mistake. It was not the one that sealed the deal or made up minds. It was something in a long lists of mistakes. It was by far not the deal breaker, but it did break me just a little bit more.

To have your life change and then to be made to feel over dramatic and useless when dealing with that change.

So my advise to all caregivers. Just be there. When pain hits just be there. I don't know how your sufferer reacts but I do know what I do, I hide. I slink off into another room and try and pretend that everything is ok. I rub my head and sigh until someone walks into the room and then I straighten like a kid who's hand was caught in the cookie jar.

Catch them. Sit them down. Kiss their forehead. Tell them to stop. Ask them what they need. Give it to them. Listen. Believe. Love. And if they need to pretend that they are fine and keep slogging through, let them. But be ready for the fall.

Just be perfect, like Prom Date. Maybe I will have him teach a class.

Negative, and not me this time...

I guess it is amazing that I made it this long. Three months without someone looking at me and doubting the fact that anything was wrong with me. Three months without someone making an insensitive comment. I guess I should be grateful.

That stopped last night. Last night when my headache was at about a 6 and had decided to stick around for two days straight. Last night when I had worked a full day and gone out anyway to help Wills raise money for boobies. Last night when I was putting on my game face because this stupid thing is not going to stop me.

That's when I was told I was using it as an excuse.

That's when I was asked if I planned on collecting disability now.

That's when I was told "I see you out all the time" (a blatant falsehood) so there must not be a problem.

And I did not handle it well.

Thinking about it now in the calm light of day I realize it was an opportunity wasted. It was an opportunity to educate that I did not take. Maybe it was not the time or the place to explain that chronic pain is often invisible and that just because you cannot see it does not mean that there is nothing wrong. But you know what, it is always the time and the place. Because he needed to be educated.

So Mr. Boardsman, here is your education.

I wake up in the morning with a splitting headache. I have to drag myself out of bed because both my condition and my "cure" cause extreme fatigue. I go into work where I educate special needs children all day long. I typically have a headache most of the day. I also experience a variety of neck and shoulder pains as well as tingling in my extremities that makes doing anything difficult. On a good day I feel ok. On a bad day I feel like complete shit. I cannot let the children see. I strive to appear like I am feeling excellent each day.

After work I am exhausted. I go home and typically do not get off the couch for the rest of the evening. Not because I do not want to but because I simply cannot. The pain and the pressure and the fatigue are too much.

Why don't I take some Motrin and shut up? Maybe because pain killers don't work. The only way to decrease my pain is to decrease my pressure. The medicine that decreases the pressure has severe side effects that cause similar symptoms to my condition, but at least I will not go blind. It was not made for this condition so it is not the most effective. Nothing was made for this condition because it is rare. It affects 1 in every 100,000.

I get up every day and I do this with a smile because I am stronger than you can imagine. So next time you want to accuse someone with a chronic condition of "using it as an excuse" maybe educate yourself first.

I don't know that I will be asking 10 of my friends to vote for you, sir.

The good, the bad, and the ugly

Last night was amazing.

You often hear people who have been diagnosed with life altering illnesses talk about how they found out who their "real" friends were. This is never a good thing. If you are one of those "real" friends you should feel very bad about yourself.

So I am always at a loss to describe my experience. I found out who my real friends were and I looked around, took attendance, and everyone was still present and accounted for. Even though I have a condition that sometimes makes me a shitty friend. Even though I occasionally have to back out of things or I fail to deliver as promised. Even though I am crabbier than I used to be these people have stuck by me and stepped up to always provide an ear, a hug, and a glass of wine when needed.

Cue last night.

I was told, we're going to have a dinner for Rare Disease Day. This sounded like great fun to me. Can I bring anything? Nope, just yourself! Wills, Mrs. Rocketship, Cats, and Spicy Ramen were all in attendance (with the Hubs of course) and I never believed that a day about illness could be filled with so much laughter and love. Everyone pitched in to make it one of the most memorable nights of my life.

And then came the gift. Who gets a gift on Rare Disease Day?

My shirt! <3

Me, after my LP.

Me, that's who. We were done with dinner eating undercooked monkey bread (which is seriously how I like it, I will tell you about my old school camping experiences at a later time Wills) and Cats brings in this box. I open it, and what is it but a t-shirt with the words "You Down with PTC" on the front, my blog address, and then the words "working to relieve the pressure." The best part? It matches my blog colors. I started to cry. I was just so overwhelmed with how lucky I am.

The best part about the whole night and this morning was I felt great. I had energy, my head felt fine, and I felt like I was back to my normal self. The magic of a spinal tap. I think someone might have body snatched me because I wasn't worried about when the other shoe would drop, which means when it did drop the suddenness was a little off putting.

I was at lunch, munching on my car Cheeze-Its (don't ask) when I got a sharp pain in my forehead. Sinus! I thought hopefully, but it didn't go away. It built into the worst headache of all time. And I just wanted to cry.

24 hours. I got 24 hours of relief. How is that fair?

But life isn't fair, and so I need to change my attitude. Instead of being annoyed by the headache I need to be thankful for the time I did have feeling amazing. I need to be thankful it fell on Rare Disease Day so I could feel normal again for this one night. I need to be happy for what I had. I also need to remember how lucky I am to have the friends and family that I do and to stop focusing on the fact that my head feels like someone is squeezing it and instead focus on how damn lucky I am. I will work on this.

Cookies

I have abused barbiturates today. Go ahead. Judge me, but I am just so sick and tired of feeling like shit. Yeah the pain meds don't help the pain but they do many me care a lot less. Now before you stage an intervention let me clarify, I took half the recommended dose this morning and the other half when I got home from work. So I guess abuse is a slightly strong word, but I feel like taking them is abuse in and of itself because I know they won't help.

I have had a headache for nearly 48 hours straight.

Today I am in the paper. I am on page 11. Check me out. I will not tell you which specific paper because I want to make it challenging for you.

I am baking cookies. I love cookies. I had to make chocolate chip and oatmeal toffee chip. I want to eat them all.

I think the hardest part about IIH is that it is invisible. When I was talking to the NewsMan about it I joked that people think I just always have a hangover, but really that isn't far from the truth. I am tired all the time. I have a headache. I am a little grouchier than I was. Still, I look the same so what can be wrong with me? People who know about my diagnosis and see me for the first time always comment on how I look great. I want to punch them. What do they think will have changed? Do they think I will suddenly have grown a fourth nipple? Everything that is wrong with me is real, but it is all inside my head. Sadly that statement makes me sound like more of a crazy person.

Pain Management?

Last time I saw Dr. Awesome we talked about pain management.

Actually, we talked about the lack of pain management.

I have been told by a doctor that during his ER rotation he learned to tell the difference between a drug seeker and a person with actual IIH. IIH is sometimes used by pill seekers because it is an 'invisible" disorder. An actual sufferer will not ask for drugs because they know that they will do nothing. An actual sufferer will ask for the doctor to shove a needle in their back.

When I first got my neck ache I thought I had pulled a muscle. Around this time my husband had some dental work done. He was prescribed vicodin and I may have borrowed one or more. It did nothing. In fact it made it worse because all I wanted to do was lay on the couch and as we all know laying down increases pressure.

When trying to treat the headache pain doctors will sometimes prescribe medicines that are prescribed for chronic headaches. Apparently on occasion pain meds are given and they help with intensity, but bottom line, you HAVE to treat the pressure to treat the headache.

The other day in art the kids were told to draw their dream bedroom (the Stinker only wanted carrots and cucumbers in her's). I don't know if that was the inspiration or what, but I have been thinking a lot about my dream treatment. Obviously what I want most is a cure for IIH, but since they don't even know what causes it yet I figure I should set my sights a little lower. So, my ideal treatment plan...

I would like a noninvasive meter that can instantly check my ICP. If it is high I would like to take a pill or take a shot that lowers my pressure within half an hour. I would even take something that is installed through surgery and then checked in a non invasive manner. I am not picky. I would check my pressure a few times a day and correct as needed. I would be glorious.