Hello Gina and a very warm
you have indeed come to the right place. you have definitely been on a bit of a rollercoaster and no wonder your
off. Unfortunately we all seem to have the same experience which considering all the information there now is, you'd think you'd want to go through all this. PErhaps they should have IIH doctor workshops so they can at least all be informed.
Feel free to ask as many questions as you need to, hopefully we can as many of them as we can, and get answers to some we might not, for you. We have lots of information in the Informational links section, as well as some guidesheets and helpful coping methods, that have been created based on experience.
We have also contacted Working With chronic Illnesses Inc, and they are happy to help IIH sufferers with free legal and insurance information and assistance. They don't just deal with people who are employed they deal with a lot of issues that sufferers have a hard time with such:
• How to get your own medical records.
• How to get and keep health insurance.
• How to get health insurance coverage for particular treatments, drugs, and/or therapies.
• How to get private disability insurance coverage.
• How to get Social Security Disability Income.
• How to assert your rights under the Americans with Disabilities Act.
• How to assert your rights under the Family and Medical Leave Act.
• How to ensure that schools accommodate students with chronic illnesses.
Advocacy for Patients with Chronic Illness, Inc.
We are part of the IH Brain Pain Team and also in partnership with the Brain and Spine Foundation. So hopefully we have lots to offer, to help you have a better time of it with IIH.