Monday, November 7, 2011

Support a Fellow IH-er

I just saw this book trailer myself and I have to say, I am pretty curious. I'll let you watch before I go on...

You may or may not remember me mentioning Pandora Poikilos before. In case you don't, I'll refresh your memory.

Why You Should Know Who Pandora Poikilos is
On my post about IH Awareness month (September) I shared a link with you to Ms. Poikilos's first book, Excuse Me My Brains Have Stepped Out" which was one of my favorite summer reads. I recommend the book to fiction readers far and wide, BUT if you have IH or know someone with IH then my recommendations become down-right pushy. If you are in this latter category, then I think you need to read this book.

Why Am I So Pushy About This?

One of the great complaints of IH-ers all over the planet is, "No one understands," or "I feel alone." In Excuse Me My Brains Stepped Out the protagonist is plagued with this condition and I believe, for that, she is the first of her kind. It's a chance to see our disease played out in a story, not just in our every day, not with the heaviness of reality to pin it down. Pandora Poikilos writes this character so well, because she understands the situation all too well. She, too, is in our unfortunate club.

Why Not Support Pandora in Her Newest Venture??

If you've already read Excuse My Brains Have Stepped Out, or if you are just a lover of fiction and require more than one recommendation at a time - the trailer above is for Ms. Poikilos's latest release Frequent Traveler, which I haven't read yet, but I can't wait to! And if you were paying real close attention to the trailer you saw that portions of the paperback proceeds are going to IHRF and NORD. How great is that?!

What do you think of the trailer?
Are you a fan of book trailers?
Have you been following Pandora Poikilos?

Saturday, November 5, 2011

Adopting a Rare Disease

Well I just had another idea.  Sadly, there isn't enough time left in this century for me to follow through with all of my ideas.  Perhaps some others will think it's a good idea, grab the ball and run with it.  I used a football analogy because the charitable organization called Uplifting Athletes gave me the idea.  Their concept is simple.  College football teams around the United States can choose to adopt a rare disease and raise funds for that disease.  I've mentioned this organization before in the hopes that one of our supporters might know of a friend or family member on a college team that might want to start a chapter at their school for the IHRF.

As a side note, I've recently heard from another mother of an IH kid that is having difficulty finding knowledgeable medical support for her child where they live.  With 7,000 rare diseases in the NORD database, it does not surprise me that anyone has difficulty finding medical support for IH.  Which leads to my idea...if football teams can adopt a rare disease, why can't medical organizations in every state, city, and town around the US/World adopt a rare disease?  Not as a fundraiser, but as a way to gain more knowledge about a particular rare disease.

I'm thinking about a simple method of encouraging every doctor's office building, physical therapy businesses, laboratories, hospital help lines, etc. to pick one or a few rare diseases to adopt.  They can learn as much as possible about the rare disease and committ to staying up to date with the latest developments.  The one or more RNs, LPNs, Therapists, or whoever adopts the rare disease in each building could be the "goto" person for information about that disease.  If every medical office in a town/city/state adopted just one rare disease, the odds go up that just about every rare disease would have a "local" advisor to help answer questions for patients with rare diseases.

Wouldn't it be nice to be able to talk with a medically knowledgeable person in your hometown or nearby city about your rare disease?  They wouldn't be able to give medical advice, but at least they would understand your rare disease and give you pointers on where to go for more detailed information.

Oh well; it's just an idea and maybe I'll have time to act on it someday.

Friday, November 4, 2011

November's IH Story: Kim Aponte-Ortiz

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Every patient with IH has a face (as we proudly display on our facebook Wall of Hope), but every patient also has a story! Here on The IH Brain Pain Blogs I plan to bring you the stories of those patients who are willing to share them with you. 

Ten questions are asked of each volunteer so that you can get a better understanding of how IH plays a unique role in each individual's life. If you have IH, know you are not alone. If you don't have IH, see what it is all about.
 November's IH Story: Kim Aponte-Ortiz

1. When were you diagnosed?

2. How old were you?

3. What treatments are you using?
A large dose of magnesium and vitamin b, Antivert, and weight loss surgery.

4. What has been working for you (we’ll even take home remedies here!)?

Diamox was working for me. It lessened the headaches and made me active again!

5. What complications, if any, have you experienced?

All the not-so-wonderful side effects of diamox! Then I started getting intense stomach cramps whenever I took it followed by vomiting. I ended up in the hospital a few times because it was so bad and I ended up getting dehydrated. One doctor kept telling me it was a stomach virus and I finally said, "It's not. You need to do blood work." The diamox ended up causing my liver enzymes to get really high and enlarged my liver.

I was put on topomax which made me sick to my stomach!
6. How has this disease changed your life?

I have always had headaches/migraines, dizziness and ear issues and the nausea but never really did anything until this year when they got really bad. I was miserable and had trouble sleeping at night because all I heard was whooshing sounds in my ear. I work with young children and this effects me everyday because it causes even more pain when the kids cry or scream. It changed me emotionally because I always knew something was wrong but the doctors kept telling me different things. It makes me wonder what if this was caught years ago? It makes me question everything.

In a weird way I feel that having IH has somewhat helped me. I now know who I can trust and count on and those that I can not. It was recommended to me that I should have weight loss surgery to try and avoid getting a shunt. While I do not think weight loss surgery will help relieve my symptoms I agreed on the surgery. This will be a life changing surgery and I feel that it is the right choice. I have always been overweight and most recently obese but I have always enjoyed exercising and working out. I am just not loosing weight like I should be. My symptoms from IH make it even harder for me to exercise because who can exercise when they feel dizzy and feel like vomiting and have a splitting headache on top of it.

It has also made me more aware of my health. Having IH I need to make sure that I am staying up to date with current visits to my PCP, nuero and nuero-opthamologist. Before this diagnoses I thought i was just having symptoms of really bad allergies. I went to a few different ents and even had allergy reducing surgery. This did not help at all so I made another appointment to see a different ent. This doctor actually listened to what I was saying and told me to go right across the hall and make an appointment with the eye doctor. The next day I was at the eye doctor and discovered this.
7. What lesson(s) have you learned on this journey?

The biggest thing I learned is to stand up for myself and to be my own advocate. I also learned that I have really amazing friends.I learned that some doctors care way more then others. I also learned that although I feel very alone at times that I am not.
8. What one message do you have for people not aware of IH?

People with IH might not look sick on the outside but it doesn't mean they aren't. Many people think it's just a headache but it's really not it's so much more! People do not understand what people with IH are going through. I once had someone tell me that they did not understand why I was crying because it wasn't like I was dying.

9. What one message do you have for fellow IH patients?
To never give up! To believe in and stand up for yourself. Doctors might have the education and experience but they do not know you or your body. If something doesn't seem right make them believe it or find a new doctor. Join a support group there are a few on facebook and they really help!

10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)?

Fellow IH-ers: How can you relate to Kim's story?
What message would you like to send back to her?
Much thanks to Kim for sharing her IH story.