Guest Post: The Worst Thing

Courtney was diagnosed with Intracranial Hypertension in 2010.  She had an assignment in her English class recently to write a poem about the worst thing that has happened to her.  With a little help from her dad, this was the result:

The Worst Thing 

by Courtney White

The worst thing for me is easy to mention,
It’s when I found out I had Intracranial Hypertension.
It’s a long name so I call it I.H. instead,
It means there is a lot of pressure in my head.
Pseudotumor Cerebri is another name,
But there isn’t really a tumor so that one’s kinda lame.
Fluid in my skull pushes on my nerves and brain,
It causes me to have all kinds of pain.
I hurt in my arms, legs, head, and back,
It’s not any fun and that’s a fact Jack.
I.H. can also lead to blindness and other problems with vision,
So I can’t take an eye test with any precision.
It also affects hearing so please no singing,
I can’t hear you anyway with my ears ringing.
It also can affect my memory like remembering faces,
Some things I’ve learned and even that I’ve been some places.
I can look fine if you pass me by or stand at my side,
No one can see all the pain I’m trying to hide.
I will push through the pain to live every day,
Trying to be normal while I work or play.
Often I push myself too hard and make things worse,
This feels less like a disease and more like a curse.
Treatment is simple or so I was told,
The doctors keep saying that and it’s getting old.
They told me I needed a lot of medicine and pills,
Some for pain and some for the fluid would cure my ills.
Well none of it worked so I still hurt and got really mad,
It seemed there was no help so that also made me sad.
And all those spinal taps let’s not forget those,
When they put that big needle in my back I could feel it in my toes.
Sometimes the taps would help the pain for a week or two,
But the hurt would always return just like it was brand new.
The doctors finally decided a shunt was the way to go,
That’s a tube in my brain that lets the fluid flow.
It works some because the pain isn’t as often,
But some days I still feel just as rotten.
I’m still glad I have it, some help is better than none,
But most days I’m still not having much fun.
So if you see me smiling on the outside please don’t judge me,
Because most days I’m screaming on the inside you just can’t see.
Not many people have heard of I.H. because it’s so rare,
So it doesn’t get much attention like other illnesses and it’s not fair.
There isn’t a cure so those that have it just have to deal
We just have to live with all the pain that we feel.
“IHope for a cure” is the slogan we all like to use,
Because to give in to this disease is something we refuse.
I’ll keep hoping a cure is found one day,
In the meantime I’ll keep pushing that’s all I have to say.

Guest Post: In Memory of Kelly Collins, Love of My Life

Since this is Intracranial Hypertension Awareness Month, each day I'm dedicating my Facebook status update all day long to show bits of information about this horrible condition. This is Day #15.  Instead of showing a video diary or a bulk of information about Intracranial Hypertension or Epilepsy, I'm gonna show you guys something else on this day. Instead of that, I'm gonna show you how much I loved my girlfriend of 7 months, and then my wife of 12 years and 5 months. 

I started talking to Kelly Anne Belcher at the end of August in 1999. It was in the 90's 'room' on Yahoo! Chat. The only reason I started talking to her was because I loved the name, Kelly. Little known to me was that I was 'supposed' to be a girl and my mom was gonna name me (you got it lol), Kelly Anne. But anyway, I started talking to Kelly and we didn't know it at the time but her aunt who moved from KY to MD 10 years prior, had actually rented an apartment from my grandfather without us knowing that had even taken place. So, the fact that we met online, wasn't really viewed as an 'accident' to us after we found out that fact, lol. But anyway, Kelly told me of her seizures and her IH condition, but I had no idea what that really entailed. lol. 

We finally met on January 14, 2000 (my grandmother's birthday) and we INSTANTLY fell in love at first sight. After a few trips to come see her again, I moved to Kentucky for good on May 27, 2000. We were still 3 hours away from one another, so I put all my eggs in one basket and moved to her home town in October of that year.Kelly told me not to marry her because it was gonna be very complicated. I told her I wanted to be near her no matter what that meant. 

So, I proposed to her on her birthday, December 19th, 2000 before our church's evening service that night. I had already asked her parents, which they just wanted her to be happy. She accepted. YAY! YAY! YAY! lol. So, on March 31st, 2001 we were married at the church of Christ in Ashcamp, Kentucky. We spent our honeymoon down at Pigeon Forge, Tennessee. Everything was great. We went back there for our 2nd anniversary. Only this time she had been taken off of ALL her meds except for one. As I brought in our bags into the cabin, I glanced over to her on the phone talking to her mom, letting her know we made the trip safely. But something was wrong. The look in her eyes was 'distant', something was CLEARLY not right. I dropped the bags, and only through the grace of God, did I get to her before she dropped to the floor and had a full-on seizure. With her mom still on the phone, I hung up and called 911. It was my first education in what to do when a seizure happens. I called her mom back and all was okay.  Over the next 11 years, Kelly would have many seizures, some during her sleep. But I always tried to let her know that what was going on, was NOT her fault. But it hardly kept the depression, physical pain, medication side effects, dizzyness, self esteem problems at bay. I tried everything to lift her spirits. Flowers for no reason, constantly lifting up of her spirits, buying of gifts, etc. I tried it all, EVERY. SINGLE. DAY. 

I loved that girl more than life itself.Towards the end, there was nothing to let me know it was almost over. I apparently made her laugh and smile and made her happy, as she'd tell me that so very often. I have a very self-depreciating sense of humor, and I used it to my benefit to make her laugh. Despite the nausea and the constant dizzyness and headaches, I somehow, was able to make Kelly laugh and smile. She made it clear that my support and constant attention to her was what made her life seem fulfilled and important.

Our last night together was so great. It was the Perseid meteor shower on August 11th, 2012. We had plans to come out at midnight and then again at 3am. It was SO bright. We saw so many shooting stars. I even commented that night, 'God, I can die now. I have seen your glory!' But, I had sprained my ankle around 130am and Kelly was feeling bad as well. So, we decided just to head in for the night. So, after our 'magical' night, at exactly 3:02am, we exchanged our 'I love you's' and laid down. And the I LOVE YOU's wasn't the normal kind. She said it like she really really meant it. Like she knew (I don't know if she did) that it was gonna be the very last time she'd tell me that she loved me. And I was content. All was right with the world.  And by 7am that next morning, she'd be gone. 

Her pain and suffering was gone. No more Topamax. No more Diamox or pain meds. No more NS appointments. No worrying about her shunt or if insurance was gonna cover her new meds. It was gone. And so was she.  Kelly had Intracranial Hypertension and Epilepsy since age 16, since she had a grand mal seizure in Long John Silvers in Pikeville, Kentucky. And subsequently was diagnosed with IH after an MRI and quickly thereafter was put under to have an LP shunt put in. 

I would give all my days, to this very hour, to spend just 1 more day with her. She was the sweetest person, lover and wife that I could ever imagine. So, this is meant as a testament to why and to how strong my commitment is to ALL current IH'ers out there. I've seen how tough it is and I will give my very last breath to helping you guys. Nothing but love, and nothing but the spirit of the fight. (((HUGS)))

By Scott Collins

Guest Post: Thankful for Family Support and Finding an IH Friend

Hi all my name is Ashley I'm 21 years old and I was diagnosed with IH on January 22nd of this year.

My journey started when I was in work, I'm a senior care officer in a home and got attacked 5 nights in a row by one of the patients. We called the doctor out to assess her, etcetera, and passed it on to management, however they never did a thing about it. The 5th night she attacked me she pulled my hair and pulled me to the floor.  She was hitting me with slippers and shoes, punching me and spitting on me. Once I got home I went to sleep and woke with really bad pains in my head, I couldn't bear bright lights and my boyfriend took me to the hospital. They thought I had a stroke at first, as my right side was very weak, the right side of my face was numb and I had pins needles in it.  They did an MRI, then they thought I had a bleed on the brain so did a CT scan as well.  Thankfully, both scans came back clear.

They then decided to do a lumbar puncture.  After 5 failed attempts they finally managed with an opening pressure of 54. They took the pressure down to 23 and I felt instant relief even though I had a sore back and head. I was admitted for 4 days and got out with acetazolamide 1000mg a day and pain relief. I was then back in and out the hospital every 7-9 days and had to get an LP every time. I went to meet my neurologist and neuro ophthalmologist. I don't like my neuro ophthalmologist -- he's really stubborn and doesn't listen to me. During my last 2 LPs, they hit the nerve in my leg so I suffer from nerve damage and it flares up now and then. I'm near 12 LPs this year so far and over 20 including the failed attempts.

I have lost some vision in my eye even though I haven't had papilledema so they are baffled slightly. Most days I'm stuck in bed in agony, but then I push myself to go out and do things with my boyfriend. My main support has been my boyfriend and my parents.  I lost all my friends over this as they don't understand although I have met a fellow IH'er and she is lovely so it's good to have someone to talk to and knows what it's like.

So that's my story thanks for reading xx

By Ashley Liddell

Ready to Represent IH!

Our awesome friend, Monica of TG Bears embroidered our foundation logo onto some polo shirts for our team to wear to the Global Genes RARE Patient Advocacy Summit next week.  Don't they look spiffy?  Can't wait to get them and wear them!

The dress code for the Summit is blue jeans and your foundation t-shirt (if you have one).  So excited to say that we have one! 

~ Pia

Guest Post: Life Has Changed, but It's Not Over!

 

My story began when I was 12. I recall vividly having these severe headaches.  Since my mother and grandmother had a history of migraines, we assumed I had the same. As I got older and into adulthood the headaches continued.  I'd have all the symptoms associated with chronic migraines and knew I would just have to manage it and live with the pain as so many women do. We press on.

 

I climbed the corporate ladder to a V.P. position in my field by the time I was 40. Also during this time the headaches became more severe to a point where they were affecting my ability to work as well as my overall quality of life. A lumbar puncture was done and I was diagnosed with Pseudotumor Cerebri, now called Intracranial Hypertension (IH).  In what seemed like overnight, my entire life changed. I went from being a Vice President with 17 years with the company and a promising future to just hoping to live long enough to see my only child graduate high school for I felt as if I were dying.

 

I was in a constant state of feeling like my head was about to explode, nausea, memory loss, the list went on and on. Short-term disability turned into long-term and, ultimately, I was deemed disabled. Imagine the life you lived and the life you were working hard for suddenly being stripped from you and you are living day by day not being able to plan because you would have to see how you felt on that day. IH being an invisible disease it's difficult for people to believe that you are disabled because you don't "look" sick.

 

Fast forward four years later.  I'm blessed to see my daughter graduate high school with honors and go off to college. Her future looks bright. That's really all I asked for: to not die before she reached adulthood.  I feel I am on borrowed time now. I live my life in a controlled bubble in order to try to manage my disease. I receive  injections every three months for aside from caffeine,  none of the other medications helped. My home must be kept cool, dark, and with minimal noise. I am restricted to being indoors most of the Texas hot summer, for temperatures affect my condition drastically as does the barometric pressure.

 

I was very proud of the fact that I didn't consume caffeine my entire life. Now, it's the only thing that will take the edge off of a headache. Caffeine, for me, was the equivalent of a cancer patient who never did drugs being forced to smoke marijuana for medicinal purposes. Yes, I was that prude. I think no one understands what living with a debilitating disease is like,  but there are things that have worked for me that I feel have contributed to the stabilizing my condition as much as can be expected. They are a  mind, body and spiritual approach to health and healing. They have been quite effective. I have lost over 70lbs through diet and frequent exercise -- meaning 5 days a week for an hour or two, if possible. I have found that too much exercising raised my brain pressure (I can feel it) and temperature so I carry ice packs and drink lots of water when doing physical fitness usually at my own pace, which is crucial, for low impact is just as effective and it has worked for me.

 

Another important factor in living with IH is that we must continue to "live" and not let the disease take over our lives. Do not yield to it, instead learn to live with it. I'm not well today as I write this bio, but I am optimistic that I will feel better tomorrow or next week. Maintaining a positive outlook on life whatever cards you are dealt. I hope for a cure,  but I'm thankful for my life even though I have IH. It's not the end of your world, just a change or newness to how you live it.

 

By Valerie Smith

Preparation Is Underway

We are excitedly preparing for the Global Genes RARE Patient Advocacy Summit and Tribute to Champions of Hope Gala!  Our friend, Monica, of TG Bears (she makes our Kathi Bear) is embroidering our foundation logo onto some polo shirts for us to wear to the summit.  Can't wait to see what they look like!  We went shopping this afternoon and found a beautiful blue gown for Kathi to wear, too.  Now we just have to find one for me (that will be the hard part, I think!).

Kathi Bear is preparing to go to the summit with us, too, so she will get to meet her sister bear!  Kendall, one of the Admins of our Facebook page, also has a Kathi Bear.  We're going to do a little photo shoot there with the girls and their bears. 

In addition to dresses and bears, we're busy putting together awareness materials to share with all the other rare advocates who will be attending this event weekend.  So much to do, so much awareness to be raised!  We're grateful to the Global Genes Project team for this wonderful opportunity to share and to learn.  Watch for pics and stories after the event!

~ Pia

Share Your Story -- Let's Change the World!

During this IH Awareness month, we are kicking things up a notch. We are putting together a book telling the IH story. We want to include as many IH'ers and caregivers and support communities as we can. 

We want to send the finished book to as many high-profile people as we can, all over the world, and make this rare disease personal to them -- give them faces and names and life stories of IH'ers and the people who love them. 

Do you want to participate? Email us your photo and your IH story (TheIHopeFoundation@gmail.com). Be sure to include your name and/or the name of your IH'er. 

We want to share HOPE, to let the world know that no matter how bleak the suffering of this disease can sometimes get, we will always HOPE. We will always work for a cure.

~ Pia

Guest Post: My IH Journey, Part 1

September is Intracranial Hypertension awareness month and jeez how IH has changed my life. I was diagnosed January of 2009 and at that time was full of life, energy, laughter and hopes and dreams. I first knew something was wrong when I was having unbelievable headaches that just would not go away. To describe an IH headache, is to think of a vice being placed on your head and squeezing it as tight as possible till it feels like it is going to explode. 

The pressure is extremely intense. Also with IH, there are two types of pressure you can have...high pressure and low pressure. When your pressure is high like mine was when this all first started, it can cause pressure behind your optic nerves as well which can lead to an eye disease called papilledema where you can lose sight as well as go totally blind. I have gone from 20/20 vision to bifocals in just a few years. 

I had to have a shunt placed right away to try and save my vision from getting worse. My papilledema has gone away and I have gone to low pressure headaches now. This is where you do not have enough fluid around your brain to keep it cushioned, mine is draining too much now and my Lord is it painful. I truly wish there was a great way to describe the pain better, but it is the worst headache you can ever imagine and it just never goes away. It gets to the point my neck hurts just as bad as well as my eyes too. I can't even touch my head when it gets too bad, just way too painful. 

IH is my worst nightmare.

By Cindy Urso