Doppleganger Days

My doppleganger returned. I don't even know who she is, but she looks just like me, sounds just like me and she gets inside my head. However, she is the furthest from the "real me" than I can ever imagine.

She is sick. Not just with a cold or a stomach ache or something that can be worked around - she is bedridden. She is imprisoned by pain and her only journeys from the bed are to the bathroom.

She doesn't eat. She can not write or read or watch TV or even participate in normal conversations. Every time she arrives I am caught completely off guard.

I fight her, but she has allies within. She has somehow won my body over and I must lay in defeat as my system turns against itself. I wonder if she has never left and I only dreamed of moments of humanity, of personal connections, of health, of anything that could be perceived as progress. I wait and cry and pray that she'll leave, but have no idea how to show her the exit.

I hate her. But I can't. She is me. I am sick. I have two chronic diseases, one of them is a rare disease, and this is what life is like. Like everyone, I have good days and bad days. The only difference is that my good days are not as fantastic as a healthy person's and my bad days are so much more extreme.

My doppleganger threatens to stay for a while on this trip (this is day 3 where I find myself typing my story on the notepad in my iPhone while still laying in bed) and thoughts of hospitals have danced in my head since her arrival. But what will the professionals say? "It must be a flare up," or when I remind them of my rare condition, they'll all freeze, "Perhaps you should see your specialist."

Perhaps, if I could get out of bed I would see someone, but what can be done once a diagnosis has been made? "Yes, Nicole, you are sick. We actually told you that already. That's why you see us so frequently."

Alas, I will find my way back. I will find pseudo-healthy me again, I hope. I will be pain free for hours on end! I will be confident enough to take a shower while home alone! I will make dinner for my husband and feed the dogs! The world will stop spinning. The intestines will stop twisting. And my brain will become uncrushed.

But most of all, the doppleganger will leave my eyes alone. She can hurt me and torture me on these visits she makes, but if she dares to threaten my vision again a war will be waged at the conclusion of which I know only one of us shall remain standing.

Please Stand By...

Tuesday's "What if" post is on a slight delay today due to massive headaches and a trip to my specialist. I try to have my posts scheduled because this happens more frequently than you would realize, but I've finally caught up to myself here...

Hopefully I will be able to share this with you later on tonight. For now, have fun adjusting your screen color with this:

A New Study: Bring on the Laughs!

Yesterday I read an article that I knew I had to share with my Intracranial Hypertension (What the heck is that?!) buddies over at the IH Brain Pain Blogs, but as I was halfway through my post it occurred to me that this is relevant to anyone who experiences pain! Here is a snippet of the post I wrote, or if you just want to jump directly to the full post now, click here.

Prescription: Ridiculousness

Posted by Nicole Rivera

We have all heard that "laughter is the best medicine," but is this just an old-wives tale? Is this a way to get people who are feeling crappy to just clam up and find the fun in life again? Well, a scientific study was done and the answer is no. Laughter, at least, those really deep, hearty, uncontrollable belly laughs, actually have a physical affect on how we feel pain!

The Science Says So
 
In an article I read yesterday on BBC America, the results of an experiment conducted at the University of Oxford were discussed. The experiment was conducted as follows:

The experimenters first tested the pain thresholds of volunteers.
They were then split into two groups, with one being shown 15 minutes of comedy videos, while the other was shown material the researchers deemed boring - such as golfing programmes.

The researchers found that those subjects that had recently experienced belly laughs were able to withstand up to 10% more pain than they had done before watching the videos.

To their surprise, the scientists also found that the other group was less able to bear pain after watching 15 minutes of the "boring" programmes.

So the question must be asked: Is 10% less pain really all that much? The scientists admitted that there was no way to determine that (in an audio clip accompanying the article) since it would depend on each person's experience, but I can say, personally ANY decrease in pain is a positive in my book!

Learn How to Laugh First
 
If you are like me and you're thinking, Where can I get my next dose of laughter?! AND NOW?! Hang on for just one more second, because this isn't just any old giggle you need to muster up.

CLICK HERE TO READ THE ENTIRE POST.

It's Time to Learn About Intracranial Hypertension

It may come as no surprise to you that I have Intracranial Hypertension (IH), as I have proudly posted my picture on Facebook as one of the many faces of this disease, however, some of you may still be wondering what the heck IH is! Which is more than understandable as I (and some of the other doctors in the hospital trying to figure me out) only came to learn of it as the diagnosis was read!

IH Is A Rare Disease
 
Intracranial Hypertension is a rare disease.

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000.

A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.

source: http://www.rarediseaseday.org/article/what-is-a-rare-disease

This is a significant piece of information because rare diseases, for obvious reasons, do not receive the same kind of attention and, more importantly, research funding as more recognizable ones. This leaves patients with limited treatment options and knowledgeable professionals to help in their time(s) of need.

IH is Life-Altering

As most chronic diseases, Intracranial Hypertension is an everyday presence in each patient's life. The symptoms include:

• severe headaches and pain, in general, 
• tinnitus, 
• nausea and vomiting, 
• disorientation, 
• dizziness, 
• pins and needles (more like invisible evil elves stabbing me with knives, but, in general, you get the idea), and 
• visual disturbances (black outs, sparks, double-vision, visual auras, etc). 

 The final symptom is the most frightening, because, if left untreated, this disease can lead to blindness due to optic nerve swelling and damage.
The problem with all of these symptoms is that every single one is invisible. I have to be honest, before I was hospitalized and diagnosed I was getting pretty worried that I was losing my mind! I looked fine to everyone else (until I started grimacing from pain or squinting from vision) and felt worse than I ever had in my whole life. This is a common complaint I hear from fellow IH-ers, as well. Even now, everyone I see can't wait to tell me how amazing I look and I'm sure, to many, it is a sign that I must be so much better, but this disease is tricky, invisible, painful and extremely lonely. We look like we can do all of the things we always could do before, but sometimes that pain is just there. Life has changed, we must adapt. We'll do things, just do them differently. IH-ers better than me have continued in their day-to-day with amazing adaption (I did that for too long with my crazy spastic colon - once IH got added to the mix, my days of deception were over!).


The Cause(s) of IH

Intracranial Hypertension is an increase in pressure in your head due to CSF (cerebral spinal fluid). You see, everyone has CSF flowing in and out of their heads all day long - it's a natural body process. Those of us with IH either make too much CSF or our body just doesn't get rid of it fast enough! The jury seems to be out on which one of those it is. Either way, it leads to all of this fluid in your head, squishing up everything because it doesn't seem to know where to go! I have what is called Idiopathic Intracranial Hypertension, where "idiopathic" stands for unknown origin. Some people can get Secondary Intracranial Hypertension as a result of a number of different conditions or diseases.

I think it is very important to note that IH can happen to anyone. While there is a prevalence in overweight woman of childbearing age, I am heartbroken to inform you that there has been findings in children (I really, really, really don't like that idea AT ALL), women of all shapes and sizes and even men! I worry that the idea that it is only prevalent in one particular group leads to many going undiagnosed for far too long!


IH NEEDS YOU!

My ultimate reason for writing this post today is to spread the word about Intracranial Hypertension. The IH community needs everyone to know a little bit more about our disease and to get some buzz going. Right now the treatments for the disease lead to more side effects that still make day-to-day existence not so bearable.

Here are some suggestions for what you can do for IH this month (did I mention September is IH AWARENESS MONTH?!):

• Donate to IHRF - The Intracranial Reseach Founation is the only non-profit in the world devoted to supporting medical research for chronic Intracranial Hypertension (in other words, THEY ROCK!!).
• Check out the IHRF Facebook page to see the wall of faces of IH, just to get a feel for how many people can be affected by a "rare" disease.
• Read a Book Where the Lead Character has IH - I truly can't say enough about "Excuse Me, My Brains Have Stepped Out" by Pandora Poikilos, but go ahead and follow the link if you want to read my review!

To My Fellow IH-ers

I wish you pain-free days, and if you are new to this mysterious club and stumbled upon this post on your quest to find answers, please do not hesitate to e-mail me with your questions. I remember the initial months of my quest for answers, for anyone in the world to know what I was going through. We out here, all over the place! YOU. ARE. NOT. ALONE.
 

Related Posts:
Think IH on Rare Disease Day
A World Without Books 
Sick Days