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

Representing IH, Learning from Mentors, and Networking with Other Rare Advocates

In exactly one month, Kathi and I will be attending the Global Genes Project's 2013 "Tribute to Champions of Hope" Gala.  It's the day after the 2013 Rare Patient Advocacy Summit, also hosted by the awesome people of Global Genes.  Last year, Kathi and I attended just the summit and it was fantastic -- so eye-opening and inspiring that Kathi decided that she wanted to do what all these wonderful advocates were doing: raise awareness for the rare diseases that affect their lives.  We talked and we talked to other people, to mentors, to each other; and that very day her foundation was born.  We've come a long way in a year.  Still a long way to go, but we're working hard and are excited about the direction this foundation is taking.

This year, we're attending the Summit with two of our friends (Kendall and her mom, Karen) who are active in the work of The IHope Foundation.  We have never actually met them in person, but we feel like we've known them forever!  We're looking forward to seeing them and talking with them, and learning more with them about how best to advocate for IH'ers and raise more awareness of IH across the globe.  

And about the gala..... Kathi and I have never been to a fancy event before.  We're excited and a little nervous!  We're so blessed to have the opportunity to attend and to represent IH.  We're very grateful to Carrie and the Global Genes team for welcoming us with open arms.  We're determined to find just the right dresses to wear so we don't stick out like sore thumbs!  :)

~ Pia

Guest Post: The Best Lesson that IH Taught Me

So I started writing my story about how I got diagnosed and what my life has been like having IH. I have to say that I really kind of depressed myself; it’s not something I want to read about (I wanted to find some Hemlock). I know what it’s like having IH and I am sure that the people that have IH know what it’s like to have IH. I do not see that point of writing what has been written before. Having IH has taught me many things about myself as a person. It has taught me to laugh more and when I laugh to use a real laugh. When I used to laugh before, I used to be embarrassed about how people used to perceive me. Now I laugh using my real donkey laugh, because laughs are hard to come by. When you live in pain you come to realize that any moment you have of joy is an awesome moment. 

When people used to say things like, “life is short” and “YOLO” (okay I still cannot stand YOLO, what is that?), I used to smirk and think, “What fools.  That is so cliché.” However now I realize life is short. Especially when you have something like IH. I want to do things now because there is a chance that I may go blind. Since I got diagnosed with IH, I have done things that I thought I would never be brave enough to do. I started writing a book (I am on page 1), I dressed up as a zombie for Comic-Con (I was a beautiful zombie), and I traveled around the United States. The bravest thing that I have done was quit my job. This was very brave for me because I am a Type A personality, I like my schedule and I like having everything set. Having to admit that I needed to quit my job because of my illness was very humbling for me, because I am a very independent person. It took me a very long time to come to terms that I was never going to return to my position at work. I also did not want to let IH win, but like John Lennon says, “Life is what happens to you while you are busy making other plans.” I was making plans and I had not realized that I was living.

To me, the most important thing to remember is not to give up the fundamentals of who you are. Sometimes it is hard to hold on to your fundamentals when you have a chronic disease. Sometimes I really wanted and want to give up. Living in pain is not fun (no duh). Sometimes I just want God to take me away (like Calgon). However, I remember that I have so much love in my life and happiness. Each night that I go to sleep I always have hope that tomorrow will be better, that tomorrow will be pain free. I never give up hope. It is the eternal candle that I have lit in my heart that will never extinguish. No matter what obstacle comes along, I always believe that the next one will be easier to overcome because I have hope. I guess that is the best lesson IH has taught me: to become a perpetual optimist.  

~ By Cynthia Rodriguez

A Day in the Life of an IH Warrior

Thank you to Scott Collins for writing this poem dedicated to all the IH'ers on our first annual IHope Day, June 25, 2013! 

Its 10am, and I'm still in bed
Head's still pounding
Too much pressure in my head
I would get up and try to make it
But my topamax makes it hard to fake it

Its 2pm, and I'm still in bed
Thinking about the words my doctor said
... Can't get no relief even when the icepacks' cold
I just found my last Imitrex, worth its weight in gold

Its 5pm, and now and the edge is off
But feeling down, forgot my Zoloft
If I don't remember no one will
Forgetting if I took every pill.

Its 9pm, and I'm back in bed
Talking to a friend, not believing what she said
Some think that I'm pregnant, some thought I was dead
It hurts that no one from school comes around
To encourage me when I'm feeling so down.

Its 2am and I'm still up
This icepack is cold and I put on my socks
Ringing in my ears, oh how I love you Diamox
My favorite show is on, but I need to sleep
Gotta go to the doctors, cancelled last week.

Its 6am and the headaches back
No one here to get the icepack from the freezer
My body hurts like this only after a seizure
I hope I didn't wake anyone up, in the house all around
I really needed my Gatorade to get this potassium pill down

Its 10am and I'm laying down
Hearing strange voices all around
Everything is bright, but everything is gray
I hate these ER trips, like the one I'm on today
IHope its not my shunt, IHope its not my vision
Just give me my life back, and no more incisions.

What a beautiful tribute and support for all the IH'ers out there.  Thank you again, Scott, for sharing your talent in the name of awareness for IH.

~ Pia

Luke Goss -- Our First Celebrity Contact!

Actor Luke Goss is now following us on Twitter!  Yes, we are totally excited!  You may know Luke from his roles in Hellboy II -- The Golden Army, Death Race 2 and 3, Blade 2, and more.  He is a versatile actor whose dedication to authenticity and depth are evident in the roles he plays.  I especially liked his portrayal of the lead character in Interview with a Hitman; his performance brings forth a sense of compassion for this person so that while you don't like the deeds he does (he's a killer, after all), you certainly understand why he ended up in this life and hope for his conversion.  Plenty of blood and death in this movie, but it's a character story at heart and Luke pulls it off very well.

In addition to being an accomplished actor and musician (he and his brother, Matt Goss had a band called Bros together in the 1980's -- check out their videos on YouTube and be enthralled by Luke's proficiency on the drums!), Luke is our very first celebrity/high profile Twitter follower.  How cool is that?  Raising awareness means getting the attention of as many people as you can, in as many walks of life as you can.  The fact that this actor, as busy as he is (10 projects in the works for this year and next, according to his imdb profile) and with as many people vying for his attention as he undoubtedly has, noticed us and actually took the time to follow our Twitter feed just blows me away!  How big is his heart that he cares this much about our little rare disease community and wants to know more about our fight for awareness?  I'm thinking it is ginormous.  :)

I want to personally encourage you to check out this actor and support his work.  Luke Goss is going places, and we are absolutely grateful that he's invited us along for the ride.  Take a look at his Twitter profile so you can follow his career, get firsthand news about what's coming up, and go see him in action.  What?  Firsthand?  Yes!  Go visit his Facebook page and Like it, and if you do please let him know that we sent you! 

Mr. Goss, if you're reading this, please let us say THANK YOU from the bottom of our hearts for your support and your interest in IH awareness.  You rock!

~ Pia

Petition to make IHope Day an Official National and International Day of Awareness for IH

On July 1st, I went to the Change.org website and started an online petition to have IHope Day officially recognized as a national and international IH awareness day.  It was a whole new experience, and took me a while to figure out that I had to add the email addresses of the people to whom I want the letters from the petition sent (every time someone signs the petition, the online letter is emailed to the person being petitioned).  I'm still learning the process of updating and promoting.  Slowly but steadily, we're gaining a bit of momentum.

To see the petition, click HERE.  If you feel moved to sign it, please do.  We would be immensely grateful.  If you would like to leave a comment on the petition saying why you feel an IH awareness day is important, that would be fantastic, too.

There are some very moving comments on the petition page.  I'll share a few in coming posts.

~ Pia

A Young IH'er Celebrates IHope Day... with a PowerPoint Presentation!

This is Ignacio.  He has IH.  He is so passionate about raising awareness that he made a PowerPoint presentation to share with his classmates.  Want to see it?  CLICK HERE.

To celebrate IHope Day, he and his mom also made a huge mound of IH ribbons and gave them out at his school for everyone to wear.  Oh, and they wore their IHope Foundation t-shirts, too!

Way to go, Ignacio!  Great job spreading HOPE and raising awareness!

~ Pia

This Warrior Mom is Moving Mountains -- and Clinging to HOPE in the Battle

 

 Be prepared for an over-share folks. Look away if that works best for you. :-)

Life has been really tough for a while now. Between trying to walk through the process of our eldest child (for which I remain grateful and so proud of the many life lessons, he now has under his proverbial belt!), the many diagnosis of the patient (we're working to get him to agree to a group home situation - Oliver and I have to accept there's only so much we can do, especially when the patient isn't capable of getting out of his own way) and then Sutton's illness and subsequent diagnosis. Everything is a push.

A new friend shared this article. It left me in a puddle. Breakdown is good though. It's how we increase our ability to improve. While reading, I had an epiphany. Yes, I am that parent. Yes, I am that person. I was raised to PUSH. I've always pushed! When mom became ill - I fought every doctor through misdiagnosis and for her to receive the best care. I pushed and ran a business, worked an additional job (30 hours a week), was pregnant through this and had our first child with very little support (he was born five weeks after mom passed), dealt with the patient (he was a challenge, even then) and took on my dad's challenges. When she passed and we inherited all the responsibility of my dad, I fought for and with him and his many issues. When our eldest child entered the first grade, the required push increased. I fought for him, loudly and with unwavering tenacity. When diagnosed with a laundry list of challenges two years later, I fought louder and harder. I never stepped down during any of this. When dad passed away, there was a relief I'd have to fight, less. A couple of years later, when another child was diagnosed as being on the spectrum, I fought again. I didn't like being in my own skin, as every moment of life, felt like an argument. Then, I found a way to stop most of the fighting. We removed all of our children from conventional classrooms and began to educate them at home.

Gone were the arguments, confrontations and feelings of hopelessness. No one would challenge food allergies that obviously impacted some of our children. No one would ever say again (at least with any authority!), that our child was the result of our not being spankers/punishers. No one would mock our method of discussion per consequences and personal integrity. No one would challenge the need for specific structure in some areas, as well as the need for lack of structure in others. No one would limit what our children wished to learn, the rate of learning, etc. I read and researched and read some more! I sought out those with far more experience than myself. I listened and learned! I pushed, but in a positive way! The buck now stopped HERE.

But now, we're tossed back into the same situation of having to push and fight. Ya'll were with us through the nightmare of ER visits and medical neglect. We owe Sutton's life to the Ponzini-Chungs - without them, who knows to what greater damage, Sutton may have been subjected. I am now back in PUSH/FIGHT mode and it's conjuring so many emotions. Pushing is necessary. Pushing is required. Somehow, I have to call on my previous warrior spirit and remember how to be the whole of who, once upon a time, I had to be. The problem is, I didn't like her. Now, I have to find a way to be a better version of who she was. She moved mountains! Certainly there must be a way to balance it all and not feel like I'm gloved and ready to pulverize the world.

Please continue to keep all of us in your positive thoughts and prayers, as we navigate life.

~ Contributed by Rachel S.

Foundation Update June 16, 2013

We are soooooo excited!!  Our Articles of Incorporation were approved and filed, and we received the certified copies yesterday.  Took us three edits, but we did it!  We are now an official corporation!  Next step is to file the necessary papers to become a nonprofit, and we've been working on those so it shouldn't be long now!

By IH Awareness Month in September, we are hoping to be able to announce that we have become a nonprofit organization at last!  We're taking things step by step, making sure we do everything right, so that we can help as many people as possible with our foundation.  Educating the community about IH, helping IH'ers and their caregivers connect with support systems that can help them, and providing financial assistance for IH-related expenses are what we're all about.  We are grateful for a community of mentors and supporters who are helping us reach our goal.  God bless you all!  And please keep praying for us and rooting for us as we head on toward the next step in this process.  Thank you!

~ Pia

Faith, Family, and the Right Neurosurgeon Bring HOPE for This Wife and Mother of Four

My name is Shelain. I am a 38-year-old African American suffering from Intracranial Hypertension. I  was diagnosed in 2009 after the birth of my second child. My family physician read an article on "pseudotumor cerebri" (an older name for Intracranial Hypertension). I was referred to a neurologist who had some knowledge of the disease but she was not willing to help me at all. She prescribed me Diamox (acetazolamide) and referred me to an neurosurgeon.  

Before I saw Dr. Dong Kim I had seven lumbar punctures. The first lumbar puncture level was so high they admitted me to the hospital. After the last lumbar puncture I had, I had a spinal leak. The leak was fixed with a blood patch. I learned very quickly what this disease can and would do to me and my family.  I was also learning as I was going through my adventure. 

Dr. Kim is and always will be my lifesaver. He educated me on this disease. He ask me during my first visit if I had seen any difference when taking the Diamox. My answer was "no."  I was told to stop taking it right away. We discussed my options and I decided to have an LP Shunt; the vessels in my brain were too small to do a VP Shunt. 

After my surgery was the best I ever felt in a long time.  But it was short lived. I collapsed at work. My wonderful LP shunt was infected. The shunt was surrounded by a bag of pus the size of a cantaloupe. I was admitted to the hospital in my city, but the hospital would not take out the shunt. They said they did not know enough about the  LP shunt. I laid in that hospital for two days. I only had IV fluids running; no antibiotics. By then I was put on five liters of O2. They didn't understand why I was getting worse. 

My family insisted that Dr. Kim be called, but they were told that Dr. Kim said he had no knowledge of me. My family was also told that I would not make it through  the night. By the grace of God; my mother insisted that I be transferred to the hospital where Dr.Kim practiced. They told her I would not make it to the next stoplight, let alone to Houston. Houston was 1 1/2 hours away. When I was loaded in the ambulance the medic told my mother, "We will get her there no matter what." The ride was bumpy. I remember my mother lying across my body the whole ride there. When we arrived, the medic looked at my mother and said, "She's here, but barely."  

Dr. Kim was called immediately. He said he was never contacted by the hospital in my city. The infection had reached my brain. I lost three weeks of my life. I do not remember anything from that point on. I normally don't celebrate my birthday or even pay attention to it. But I thank GOD for seeing that birthday in the hospital. At that time in my life my husband had been diagnosed with a rare type of Leukemia. I had four children at home: two stepdaughters and two children of my own. Their ages were 15 years, 5 years, 2 years, and 1 year old. I left the hospital with no shunt and many headaches. I had home health visit me. I had antibodies running through my port a cath. I had to see an Infectious Disease doctor while in the hospital and when I returned home. 

Six months later, I had another LP shunt put in. Life was bearable. Then my LP shunt stopped working nine months later. I had a revision four months later. My depression had gotten worse. I was fighting my illness and trying to be a supportive wife to my husband, helping him with his chemo and his recovery. I still had to be a mother to my four children. Homework and school projects were my way of life. I had two babies I was trying to teach to walk and talk. My five-year-old was starting school. In the midst of all of this, I was dealing with this illness that had me in pain that I would never wish on anyone. My mother and other family members helped me with the kids and housework when I could not get out of bed. And I still held a full time job. I would go to work, vomiting in between patients. Some days I would black out at work. But I still maintained.

In 2012, I was diagnosed with Chiari Malformation. Dr. Kim says it's because of my shunt pulling so much fluid. He had never had that happen before.  In 2013, I had Fossa Decompression surgery. To this date I suffer from chronic pain, depression, and IH. I hope I can help educate and be a support to someone suffering as I am. My oldest daughter graduated with honors and is attending UT of San Antonio. My husband is in remission and doing better health-wise than I am. 

It is said that GOD don't put no more on you than you can bear. HE must think I am SUPERWOMAN! Because I have borne it all and seen it all. 

Guest Bloggers Wanted

Are you someone affected by Intracranial Hypertension?  Do you have it yourself?  Do you know someone who has it?  In honor of IHope Day this month, we invite you to share your stories of HOPE in the midst of trial with this rare disease.

If you would like to be a guest blogger, please submit your story along with a photo or two to us at TheIHopeFoundation@gmail.com and we will review it and reply.

Thanks so much, and we look forward to reading and sharing your HOPE testimonies!

~ Pia

Foundation Update for June 5, 2013

We had a conference call with one of our awesome mentors yesterday, and it was wonderfully productive!  We are pleased to say that we're on the right road with our foundation and we now have more direction as to how to move forward to officially become a nonprofit.  There were so many things to do all at once that it was pretty overwhelming, so we are grateful for good advice from someone who's already been on this journey.

Kathi is working today on remaking our website.  We've been having issues with the host site that we've been using (which is why that site hasn't been updated as frequently as we would have liked), so our mentor suggested another host.  So far, it looks really good!  Can't wait to unveil the new website!

I'm working on paperwork -- with a new foundation there's always bound to be paperwork.  Thankfully, I love to do this stuff so it's all good!  :)

In IHope Day news, we've written to our local government officials to request that IHope Day be officially recognized as an IH awareness day and we're awaiting their replies.  So exciting!

Kathi has been visiting her future service dog, Lily, each week.  Last week, she was measured for the mobility harness that Lily will wear!  Kathi and Lily are getting closer all the time, and they love seeing each other!  Here's a little video of last night's "hello" session:  GREETING EACH OTHER.  Enjoy!

~ Pia

Wear Your Support!

Sandy Dans of Jewels for Hope has designed a beautiful Swarovski crystal bracelet for our foundation!   The colors match the IHope Foundation website, pulling in the yellow and brown of the logo sunflower and adding the rich blue of the sky.  What a fabulous color combination!

This is a great bracelet to wear to more dressy occasions -- out to dinner, to a show, or even to a banquet or gala!  The facets of the Swarovski crystal beads catch the light to make the bracelet look simply stunning on your wrist. 

Sunflower button may vary, but it will always be a sunflower!

Sandy even matched the closure to Kathi's foundation logo, choosing a sunflower instead of a standard round button.  It's a personal touch that we are so grateful she thought to add!  Your bracelet might have a different button from the one shown in this picture, but it will always be a sunflower.  You'll probably want to wear this bracelet every day, it's so beautiful!  Don't worry, we won't stop you!

For everyday wear, Sandy designed this fun graffiti bead bracelet that has the traditional IH colors of blue and green.  I love mine and wear it everywhere I go!  This bracelet, like the other, is lovingly handcrafted and supports IH awareness.

Sandy and her daughter, Stevie support various charities through their company, Jewels for Hope.  They are active members of The Artisan Group, a juried group of talented artisans that provide gifts for celebrities and members of the press on award shows such as the Oscars and the Golden Globes, and more.  Their bracelets are hot commodities in the entertainment world!  We are so honored that they have chosen our foundation as one that they would like to support.  When you visit their website, you're bound to find a beautiful bracelet that you just have to have -- even if it's not one of our IHope bracelets, you can still designate the donation to come to us by writing "The IHope Foundation" in the Add Comments section of your order page.  It's that easy!

To order either bracelet, simply click the appropriate photo and you'll be taken to the order site.  Each bracelet comes in three (3) sizes, so pick the size that works best for you. Your bracelet won't be made until you order it -- it will be made just for you!

~ Pia

IHope Day Is Coming!

Announcing IHope Day, an awareness day for IH!  Kathi is always looking for ways to spread the word about IH, and especially spreading HOPE for everyone who is affected by this rare disease.  We were talking with our good friend, Monica of TG Bears (she handcrafts Kathi Bear) in mid April about a day for IH awareness.  We had noticed that she participated in a Purple Day for Epilepsy awareness and were intrigued.  As we were talking with Monica, we wondered if there was a Blue-Green Day for IH awareness.  We did some research and found that IH awareness doesn't have its own day..... yet! 

A couple of questions came up:  what should we name our day, and when should it be?  We posed the questions to our Board of Directors and together came up with IHope Day on June 25th.  How did we select these?  Kathi's desire for this day -- and her foundation -- is to inspire IH'ers and their supporters, caregivers, and friends to always have HOPE no matter what is going on around them.  There is relief out there; there is a cure out there; there is support out there.  We need HOPE to keep up the fight!  And since Kathi's foundation was the organization birthing this day, we wanted the title to reflect the foundation somehow; this worked out well, since "IHope" is also a term used by so many IH'ers around the world -- the day would have instant familiarity in the IH community. 

As for the date, IH Awareness Month is in September, so there are a lot of IH awareness events going on then already.  Rare Disease Day is in February, and since IH is a rare disease there are a lot of IH awareness events going on then, too.  So we thought we would pick a date in between the two to keep awareness in the forefront of the public consciousness year round.  That meant we needed a date in the summer months.  Kathi's birthday is on June 25th, right in the middle of the timeframe we were looking for!  Monica suggested that we use that date for IHope Day, we posed the suggestion to the Board of Directors, and it was agreed that IHope Day would be on June 25th.

Monica even offered to support this event as she had Purple Day for epilepsy awareness: she is offering five (5) Kathi Bears at discounted prices just for this event!  How awesome is that?  The discount ($49.99) is 1/3 off the regular price of each bear ($74.99), and includes shipping to any USA address.  This deal is available on IHope Day only, on a first come first serve basis.  As an added bonus, we're throwing in a pair of blue and green ear ribbons with each of the 5 Kathi Bears ordered through this event!

We've made an event page on Facebook that you can join if you have a Facebook account.  Lots of great ideas there on what you can do to celebrate IHope Day, and suggestions on spreading the word in your hometown.  If you don't have a Facebook profile, no worries!  We also have a public IHope Day page on Facebook for you -- no profile necessary!

We're encouraging everyone to write to your local government and ask that they support IHope Day as a day of awareness of IH.  Contact your government office and tell them what IH is.  Tell them that we are hosting a day to let people know that this rare disease is out there, it's debilitating, and we need a cure.  Ask them to please make a declaration instituting IHope Day as as an official IH awareness day. If you need help or advice, please contact us at TheIHopeFoundation@gmail.com and we'll be glad to help you out.  We can do this together! 

Please join us for IHope Day on June 25th.  Wherever you are, you can participate!  It can be as simple as wearing blue and green that day and sending people to the IH Research Foundation website for more information, or you can go all out and make t-shirts, banners, buttons, and more!  Whatever you choose to do, we hope you'll share your activities and ideas on our Facebook page.  We would love to celebrate with you!

~ Pia

Back on Track!

We have submitted our revised Articles of Incorporation to the Secretary of State.  Now we just have to wait for their filing and certification, and we're back on track to becoming an official nonprofit!  We are so excited!

In Facebook page news, we have welcomed a few new Admins to post on the page and respond to your posts, questions, and comments.  Hop over to the Foundation page and say hello to Angie, Hollie, and Luci!  You'll find their pictures and intros in the Page Admins album.

~ Pia

A Stumble and Some News

Well, we got our Articles of Incorporation back from the Secretary of State's office.  We have to make a couple of changes and resubmit them before they can be approved.  Just minor changes, so hopefully the next round will be the final one.  :)

Sandy Dans of Jewels for Hope designed three beautiful bracelets for the foundation.  We received two of them a little while ago and are taking photos so we can share them with you.  They are simply gorgeous!

Our friends, Kendall Gagliano and John Dreyer have signed onto the foundation team.  They will join Ellen, Kathi, Aimee, and me in posting tidbits on our Facebook page and maybe even an entry or two here on the blog.  We'll introduce them to you over the coming weeks.

Kathi Bear went on a new adventure.... a shopping spree!  Check it out on her blog HERE.

~ Pia