Fill in the blank: The hardest part of my IH treatment has been ___."
What has been the hardest part of managing your IH treatment? Fill in the blank.
when it feels like nothing works, even after trying all the things (and feeling like people think I'm exaggerating how hard it is).
My heart goes out to you. That must be tough. Are the people closest to you at least supportive? Please know we're here for you whenever you need us. - Lori (Team Member)
The hardest part for me was a Nurse Practitioner who worked for my pulmonologist who seemed to have a moral objection to the use of sodium oxibate for treating IH. She seemed to have a fever against it's use. I was sleeping between 17 and 20 hours per day and she refused to refer me to any of the 4 or 5 sleep doctors in the same practice. She wrote in a letter to my PCP the both she and the pulmonologist were opposed to me being referred to sleep specialists or taking the only FDA approved medication for IH.
She delayed a very effective treatment for five years. Xywav gave me my life back.I'm sorry for what happened to you, but very glad to hear that you sued and won. Maybe they'll think twice the next time they hire someone who needs accommodations. I've no doubt they lost out on an excellent employee. - Lori (Team Member) The effect it had on my Social Security and r
State retirement benefits is what really hurts. I was 60 y/o when I was fired. I had planned on working until I was 67. Both my SS benefits and FRS Retirement would have been much higher.
Getting hired at age 60 is hard enough, termination tarnished you. People think negatively about such employees.
Getting my husband to understand that I'm not lazy and it's a medical condition.
Hi
. Welcome to the community! I really wish you had more support from your husband. Has he ever come with you to an appointment with the sleep specialist? Warm wishes. - Lori (Team Member)
