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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.
December's IH Story: Hope Hugel
1. When were you diagnosed? April 2011 2. How old were you? 33
3. What treatments are you using? Diamox, VP Shunt
4. What has been working for you (we’ll even take home remedies here!)? Pain Meds and rest
5. What complications, if any, have you experienced? Headaches, dizziness, neck/shoulder pain, papilledema, graying of vision, seeing spots, swollen/hurting eyes, hearing heartbeat in ears
6. How has this disease changed your life? I can not keep up with others around me or do a lot of things I used to. I can’t laugh with my kids because it hurts my head too much.
7. What lesson(s) have you learned on this journey? Have eye exams annually, keep a diary of issues that you are experiencing and be your own advocate until someone will listen to you.
8. What one message do you have for people not aware of IH? IH can be difficult to understand. Imagine having a severe headache daily that will not go away. It is like having a brain tumor but there is no tumor and no cure. It can cause blindness if left untreated and it is a life altering disease that no one should have to endure. It can happen to anyone, imagine if it happened to you, how would you feel?
9. What one message do you have for fellow IH patients? Be your own advocate. You know your body and your limitations better than anyone. Just take it one day at a time. Our day will come when we won’t have to live with this any longer. There is HOPE. Spread the word to anyone willing to listen; raise awareness.
10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)? firstname.lastname@example.org or email@example.com (email), Hope Hugel (FaceBook, Twitter, and LinkedIn), HHugel(DailyStrength)
Fellow IH-ers: How can you relate to Hope's story?
What message would you like to send back to her?
Much thanks to Hope for sharing her IH story.