Tuesday, March 29, 2011

This is NOT a death sentence!

It's been a long month, but I promise to update as fast as possible! I've been very sick with an upper respiratory infection and double ear infections. On top of that, we had to put my cat down, so I've been very bummed and missing her. In between all of those, I'm still trying to find a job for next year.

I'm on spring break this week (reminder: I'm a teacher), so I have lots of doctors appointments scheduled. Yesterday, I drove into the city (about an hour away) to see the neurologist. She thinks my pain levels are getting much better, I've gotten through the rebound headaches (FINALLY!) and the headaches are still there but less severe than they were. She said she felt like my eyes were doing better, but that I still needed to keep the neuro-opth. appt today (I'll get there next). She is going to double my dose of amitriptyline / elavil (used for pain). I also mentioned that I'm not positive that I'm allergic to Sulfa and she recommended I see my PCP to see if there is a test for it or if she's willing to monitor me more closely to see if I'm allergic or not. Things would obviously be much less complicated if I don't. I also mentioned that I've been losing a ton of hair lately, to the point that it completely stops the water in the shower from flowing down the drain. It seems to be coming out in clumps (no missing patches however). I asked if it could be related and she felt it was not, so I'm going to go see my PCP about that as well and see if I've got a thyroid issue going on.

This morning, I went to the podiatrist because my plantar fasciitis that I have had for three years is not getting any better, just worse. I spoke with him about me losing insurance and we both agreed that it's time for me to have surgery, so I go back again in two weeks for a check up and we will schedule a surgery date at that time. 

After that appointment, I raced back downtown to see the neuro-opth. Had my visual fields test done and it was better today than it was last month. Odd, but good news nonetheless. When he looked in my eyes, he said that they were "98% better" than they were when he first saw me. WOOHOO! More good news! And then instead of seeing him next month, he doesn't want to see me for 2-3 months. He said "I know I don't have to worry about you. You know how to get a hold of me if you feel there is a problem, you know the warning signs, and you're on medication that should regulate this from now on. There's no reason for me to see you as often." It felt great to hear that.

One more visit this week--on Friday. I'll see the PCP to see about the Sulfa allergy and see if I've got some thyroid issues going on, but overall, I do feel much much better.

Guys, I just have to say......This is NOT a death sentence. My life is not over and darn it, I will not stand by and let this disease get the best of me.

And darn it.....you're not either. Right? Who is with me?!?!

The link between physical and emotional pain

Great article on cnn.com about the link between physical and emotional pain and why it is important to deal with emotional issues when dealing with chronic pain.

Click here to read!

Tuesday, March 22, 2011

What else does an IH Bedroom need?

So now we have a wild quilt, pale turquoise and orange walls, and blond furniture.  It sounds wild, but I think it will work.  Now for the fun part, what needs to be added to make it a perfect bedroom for an IH patient?

I have one idea already.  I saw some literature for an inflatable wedge that can be placed under the mattress.  When the nausea hits in the middle of the night, a button can be flipped to raise the head of the bed as much as needed.

What else should be added?  Think of physical needs and ambiance.

Thursday, March 17, 2011

Not being at war with my head

I read the NYTimes on the web and there are a few columns and blogs I try to find each week. Different writers write each week. Sometimes they are interesting, sometimes they aren't. One week, some time ago, the migraine blog was more than just interesting, it spoke to my spirit.

I have migraines as an accompaniment to my IH. At least, we guess it is the pressure kicking them off. Could also be that I'm in my 40's. Something about that age and being female sometimes brings them on, but it really doesn't matter why. I find the stories of people who have chronic headaches to sometimes give me insight into my own condition and life with IH.

The writer spoke of her battle with migraine throughout her life and how she finally learned to stop fighting it. To stop being at war with her body. And just live with it. And how acceptance is not the same thing as giving up.

Here is her story.

People I know and meet sometimes say they don't know how I live with a headache of varying degrees every day. I usually shrug and say, "I just do." After all, it isn't like I have a choice.

I think somehow I accepted this, and everything that came with it, very quickly and without consciously realizing it. I accepted that the pain was going to be there. And as long as I could ignore it or at least push through it, I would. It is just my new reality and I never really fought it. I just didn't have the time or energy to spare. I couldn't curl up in my bed for weeks. I didn't have the vacation time from work for that. ha.

I do remember some panic of how it was going to work. How would I work full time and feel like this, in pain, so tired. How would I learn to cope with my brain being under siege every day. And it took a while. I had to learn better organizational skills. My great memory went under a bit and I had to learn to write everything down. And I just did. More out of a sense of survival than anything perhaps. Who else was going to bring in a paycheck if I didn't? I had to keep moving forward.  I still am.  My brain is still changing and I'm still adapting.

So I read her story with great wonder. And I will read it again. Because I think I need to be more conscious about it, this not being at war with my head. Not being at war with where my life is.  I need to celebrate what I do have can do and be.  I need to pursue those talents and interests that speak to my heart and spirit with the energy I have.

Because I know I am scared a lot and that may mean there is a war going on inside I am not admitting.

Wednesday, March 16, 2011

Choosing An IH Anthem

As I waited for the rain to finally come in the middle of the night last night, I battled all day yesterday with all types of brain pain, brain fog and a litany of other IH symptoms. Today, as some rain has been released from the over-saturated skies, some of the symptoms have subsided, but, in general, the pressure remains.

It is during these high pressure times that two different songs echo in my mind: Pressure by Billy Joel and Under Pressure by Queen and David Bowie as my IH Anthem(s). Here are the lyrics and my arguments for each.

Pressure by Billy Joel
You have to learn to pace yourself
You're just like everybody else
You've only had to run so far
So good
But you will come to a place
Where the only thing you feel
Are loaded guns in your face
And you'll have to deal with
You used to call me paranoid
But even you can not avoid
You turned the tap dance into your crusade
Now here you are with your faith
And your Peter Pan advice
You have no scars on your face
And you cannot handle pressure
All grown up and no place to go
Psych 1, Psych 2
What do you know?
All your life is Channel 13
Sesame Street
What does it mean?
Don't ask for help
You're all alone
You'll have to answer
To your own
I'm sure you'll have some cosmic rationale
But here you are in the ninth
Two men out and three men on
Nowhere to look but inside
Where we all respond to
All your life is Time Magazine
I read it too
What does it mean?
I'm sure you'll have some cosmic rationale
But here you are with your faith
And your Peter Pan advice
You have no scars on your face
And you cannot handle pressure
Pressure, pressure
One, two, three, four

  • This song gave me a headache long before I ever got diagnosed with this disease!
  • The way the word "Pressure" seemingly interrupts every line directly parallels how my intracranial pressure interrupts my every thought.
  • The lines "You used to call me paranoid ~ Pressure ~ But even you can not avoid ~ Pressure" makes me think about pre-diagnosis versus post-diagnosis. I thought  I was going nuts feeling all of the pressure, but then the doctors confirmed it... I could not avoid PRESSURE.
  • The melody of this song, for me, feels very intrusive like ***PAY ATTENTION TO ME!!*** which is exactly how annoying IH is, no matter how desperately one tries to ignore its existence!

Under Pressure by Queen
Mm ba ba de
Um bum ba de
Um bu bu bum da de
Pressure pushing down on me
Pressing down on you no man ask for
Under pressure - that burns a building down
Splits a family in two
Puts people on streets
Um ba ba be
Um ba ba be
De day da
Ee day da - that's o.k.
It's the terror of knowing
What this world is about
Watching some good friends
Screaming 'Let me out'
Pray tomorrow - gets me higher
Pressure on people - people on streets
Day day de mm hm
Da da da ba ba
Chippin' around - kick my brains around the floor
These are the days it never rains but it pours
Ee do ba be
Ee da ba ba ba
Um bo bo
Be lap
People on streets - ee da de da de
People on streets - ee da de da de da de da
It's the terror of knowing
What this world is about
Watching some good friends
Screaming 'Let me out'
Pray tomorrow - gets me higher high high
Pressure on people - people on streets
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love
but it's so slashed and torn
Why - why - why ?
Love love love love love
Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance
Why can't we give love that one more chance
Why can't we give love give love give love give love
give love give love give love give love give love
'Cause love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is ourselves
Under pressure
Under pressure

  • This song has a much more positive message and I have always loved it.
  • The lines "Pressure pushing down on me ~ Pressing down on you no man ask for" are often the first things that come to mind when I start to feel my pressure rising.
  • We all know that not everyone can handle the new reality of a friend with IH, so these words, although in their original context have a different message, seem to utter a small unspoken truth known to IH patients: "It's the terror of knowing ~ What this world is about ~ Watching some good friends ~ Screaming 'Let me out'"
  • But most importantly, I think this is a great anthem because it asks IH-ers "Can't we give ourselves one more chance" and then ends off with a dare: "And love dares you to change our way of ~ Caring about ourselves ~ This is our last dance ~ This is ourselves ~ Under pressure ~ Under pressure ~ Pressure"
 It is difficult for me to make a singular choice in this matter. Honestly, they both work for me depending on the day, the symptoms and how I feel. I guess I am flaky that way. If you are unfamiliar with either of these songs and would like to hear them along with some quirky video, check these out:

This is really one of the weirdest things I have ever seen...

THIS IS AWESOME (*note: I love the Muppets!!)

Do you have a great IH Anthem? Why do you love it?

Friday, March 11, 2011

Design the Perfect IH Patient Bedroom

In the fall, my son will go off to college.  It's been fun and exciting for our family to follow along while he visits and selects a school.  I know that I'll be sad when the time comes, but my daughter (the one with IH) will miss her brother tremendously.  Many times, families with a chronically ill child have stronger bonds than average.  It's a small perk that comes with the health problems. 

Of course, she won't be too broken up to forget the promise that she can have his larger bedroom when he moves out.  To take her mind off of things, she's going to paint and redecorate his room before the furniture swap.  That's where YOU come in.  I thought that it would be a light-hearted change of pace to let our readers design the perfect IH bedroom.  Not only can you voice a vote for decorations, but you can make suggestions that every IH bedroom needs to have.  My daughter has veto power, but let's see what everyone comes up with!

Step 1:  This week, we're picking a wall color.  I just got back into town after attending a quilt retreat.  I started a wild and crazy quilt that she fell in love with.  I suppose I'll have to finish it this summer.  How do you decorate a bedroom based around an orange and turquoise quilt?  It's not the calm color that a nauseous stomach would want to look at, but hey, let's have some fun!  What color should she paint the room to go with this quilt?


Tuesday, March 8, 2011

Can I sail through the changing ocean tides?

Took my love and I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Well, the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older
I'm getting older too, well

Well, I've been afraid of changin'
'Cause I've built my life around you
But time makes bolder, children get older
I'm getting older too, well, I'm getting older too

So take this love and take it down
Yeah, and if you climb a mountain and you turn around
And if you see my reflection in the snow covered hills
Well, the landslide brought down

And if you see my reflection in the snow covered hills
Well maybe, well maybe, well maybe
The landslide will bring you down

Yes, yes, I did steal those lyrics, but they truly sum up how I'm feeling right now. I feel as though my life is in shambles and it seems to all come down to one thing--my illness.

Went to the neuro-ophthalmologist about a week ago. My eyes are improving. The way that I understood him (but who knows because he doesn't know how to break down the medical jargon for me!) was that I still have papilledema but that it's much better. He wanted to see me in two months and I wouldn't agree to that--I'll be back there in three weeks for another visit and visual fields test. However, this visit frustrated me to no end. It's nice to know that my eyes are getting better, but they did not seem concerned about my double vision at all. The doctor told me that if it happens when I'm driving to just close one eye. How comforting! Also, if my pressure is getting better, which we saw by the lower numbers in the tap that it is, why are my headaches getting worse? Why are they getting completely unbearable. I thought they were bad before and now they seem at least five times worse. I wonder if they can get even worse than they are now. I'm worried that if we can't get the pain under control soon that it will get much worse and really be debilitating. Which leads me to....the day prior to my NO visit, I found out that I lost my job. I don't know how soon I will lose my health insurance and it's very frightening. I am going to break my lease or buy out of it and move in with my parents to in the long run help save money and it'll be nice to have the extra support on my bad days, but they obviously can't provide me with health insurance. I don't know what I will end up doing. Back to the pain that I am having....I had to call my neuro on Friday. I hate calling her to bug her since I know she is busy and working at two different offices and has her own life to deal with, but I had to have her paged. I'm sure in time, I will feel more comfortable speaking up for my needs, but I have never been one to feel comfortable asking for help or inconveniencing someone else. I have always tried to put others first and it kills me now that I have to try to put myself first at times. Where was I? Ugh. Uhm.....now I have to go re-read and try to figure it out. Oh....the phone call. Anyways, I told her that I've been having trouble going in to work because of the pain and now lost my job and all of that. She is trying me on a new medication to try and reduce the pain because the fioricet doesn't seem to be working anymore as my headaches are getting much more severe. The new medication is called Elavil. It's typically used as an anti-depressant but I guess is supposed to help relieve migraines. I'm not really sure how it'll work, so we will have to wait a few days and see how it goes. My thought though is that pseudotumor headaches are majorly different than migraines. To me, it's like comparing a broken leg to tendonitis, yes they both hurt, but are not the same pain nor do they have the same cause but yes we call them leg pains, right? I don't know, but hey, if it works, I'll be happy. At this point, I'm willing to try just about anything to avoid having a shunt.

Can I sail through the changing ocean tides?
I don't know, but I'm sure as hell going to try!

Monday, March 7, 2011

5 Ways I Have Kept My Sanity as an IH Patient

In June 2009 I was diagnosed with Idiopathic Intracranial Hypertension. While the disease is not fatal, it is life-altering and becoming a patient with a chronic condition was not something I was in any way prepared for. However, after nearly two years of my "new life" I have recognized some things that have helped me remain sane through this process.

1. Finding relief in the diagnosis.

I was diagnosed after being rushed to the emergency room for nearly losing consciousness after a shower one Sunday morning. It took four days of test after test after test and my vision diminishing every day to reach the mysterious sounding diagnosis of "Pseudotumor Cerebri," now more widely known as Intracranial Hypertension. I had no idea what the heck that was, but my doctors informed me that with my results (an opening pressure of 60 and "impressive" papilledemas) I had it for much longer than the month and a half I decided something was wrong.

As they described the symptoms and as I continued to research IIH/PTC I started to realize that I wasn't losing my mind. All of the bizarre conditions I got year after year - sinus pressure with no visible congestion, dizziness, fatigue, ear clogging with nothing there, and even my chronic sciatica pain, could all have been as a result of this pressure. I didn't have a bunch of things wrong with me: I had one silly chronic condition that affected my brain, and therefore affected my whole system. To just put a single name to it and know that I am working toward treating this one thing has been, and continues to be an enormous relief to me.

2. Finding my community. 

 Once I had a diagnosis, I felt better. I felt like I was on the road to recovery, however, as symptoms continued I kept asking myself, "Could this be because of this disease? Is this another symptom?" I would conjecture, but I would never really know and my doctors would often respond with enigmatic replies such as, "It could be..." After a couple of months, I began to feel a bit lonely.

I started scouring the Internet for any information when my eyes were finally able to handle the screen. I set up Google Alerts for "Pseudotumor cerebri" and "Intracranial Hypertension." I started to receive links to medical research and corners of the internet where someone would ask, "Have anyone ever heard of..." and I would be the first to respond. Finally, in late September 2009 I got an alert that led me to DailyStrength.org.

I can not express the depths of the gratitude I have for this community. The Pseudotumor Cerebri Support Group at Daily Strength is what I credit most with maintaining my sanity throughout this entire process. For the first time I was able to share my experience with those who truly understood what I was feeling. In the beginning, I would be on that site every hour, starting discussions, contributing to discussions, or just reading through the archives. The members of the group vary from those newly diagnosed, to members who have had this disease for decades, there are also parents and spouses of patients sharing their experiences, advice and questions. Now, I am sad to say, my participation has decreased, however, I do my best to check in weekly, to attempt to pay it forward and to check in on my fellow groupies.

In the meantime, I still have those alerts up and any time I come across a new patient scouring the web posting questions about the disease or blogging about their new mysterious diagnosis, my first recommendation is to find the Daily Strength group and to connect with IHRF. (If you are a patient or someone who cares about one, and have not visited either of these sites, I highly recommend you do!)

3. Letting go...

By far the most difficult thing for me to do as a patient with IIH was to let go. I am passionate about my teaching - my career and calling since 1998. I have dreams of what my life is "supposed to be" like. I was 33 when diagnosed and hadn't even reached my first wedding anniversary. However, whether I liked it or not, one Sunday in June 2009, my body literally swayed to a stop and then I was trapped in a hospital for a week to try to figure out what went wrong.

I wish I could tell you that I got the message while waiting for a diagnosis that week. I wish I could tell you that I understood when, by the end of that summer, on August 21, 2009 I was rushed to have an emergency eye surgery to save my sight. Alas, it was not my time... I went back to school defying all that my biology told me and fought the good fight, but my students suffered for it, I suffered for it. I was beyond miserable.  By the new year, I understood what I must do to save my sanity and to have any hopes of a healthier life: I had to Let Go. I had to S-L-O-W -- D-O-W-N.

That was a terrifying epiphany, I resisted it for so long, but the moment I said, out loud, to my husband, "I think I have to take a medical leave," before he could even respond, a huge weight lifted off of me. I had to let go of who I thought I was and begin to learn about who I really am.

4. Not Letting Go...

The only way letting go could work for me was with the stark understanding that I must still find a way to let my dreams live. I understand my limitations and I know that a position in a school or a classroom is probably too far beyond my grasp right now, but that doesn't change who I am or eliminate my passion for teaching. There are other ways. There's this thing called the Internet, there is this hobby called "blogging" I picked up which has allowed me to reach new audiences and share what I learn every day. I am a work in progress, but I have not let go of the BIGGIE dreams and passions in my life:
  • I will continue to find a way to make a difference in this world.
  • I will have a family.
  • I will live a healthy life: body, mind and soul.
  • I will continue to be an optimist and appreciate all that I have.

5. Not Letting What I Can't Do Interfere With What I Can Do

Directly in line with my philosophy of not letting go, I read a great ebook at the beginning of the new year called Small Ways to Make a Big Difference. It is a quick read chock-full of inspiration, but I was stuck on one page, for a really long time. It had only one quote printed across it:
I read it and re-read it and let it really sink in. It has become a sort-of mantra for me. I don't push myself. I do what I can, when I can but I don't let what I can't do interfere with what I can. The key, for me, to keeping my sanity with this wacky condition is remembering to take the opportunities to do what I can when I can!

I am happy to say that becoming one of the new contributing authors on this blog is one of those things I can do! I look forward to being able to share my experiences, epiphanies and explorations with an even larger set of the IH community and help to raise awareness about this condition!

Wishing all my fellow IH-ers a pain free day!

    Friday, March 4, 2011

    Keeping a Log is Important

    Last week, I recommended that parents start a health log.  Coincidentally, I took my daughter to a sleep specialist last week.  IH seems to cause tremendous sleep problems for many patients and I was hoping that the Sleep Lab might be able to help.  She got a diagnosis of Hyper Awake Syndrome and yet another log to start keeping.  So, yes, those logs are important to the doctors!

    Not only is my daughter filling out a daily sleep log, I also added a simple version of the sleep log, to her IH log.  I've already spotted a trend!  She got less sleep on the same exact days that she had problems with IH symptoms.  Take a look.  We chart out Symptoms, Medicines (effectiveness), Sleep Log, and School Notes.