Navigating healthcare services?
March 17, 2012 3:49 PM Subscribe
How can I be the best advocate for myself getting the best health care possible with a myriad of complicated chronic health problems and symptoms while on medicaid?
posted by anonymous to Health & Fitness (11 answers total) 3 users marked this as a favorite
I have been having a lot of difficult health problems prior to and after having an emergency gall bladder removal. After the gall bladder removal I had symptoms such as turning yellow, vomiting after any large meal or processed high fat foods, extreme headaches followed by vomiting, severe back pain and difficulty walking, dark urine, muscle aches, extreme fatigue, difficulty moving, stomach bloating and rashes on my stomach particularly the right side near the surgery but on other areas of my body as well, mental confusion particularly associated with stress and with large meals.
The symptoms come and go and I have found that reducing stress and eating a very healthy diet with a lot of fruit and vegetables and quality protein seems to reduce-- but not eliminate, the symptoms. I have been losing a LOT of weight which is hypothetically good but it's not happening because I'm doing anything much differently and I'm a little concerned as that can be a symptom of liver problems as well (And I just keep losing it, I'm not trying to do anything, I'm down to 125 from 180)
I went to the doctor in the year after the surgery to discuss the symptoms but I only got a few symptoms in (vomitting after heavy or poor quality meals) before the doctor dismissed my concerns as being "normal" for post gall bladder removal.
I don't feel like this is normal and I have a lot of friends who have had their gall bladders removed. It sounds like there is more going on with my liver and possibly kidneys (or who knows?) than just usual gall bladder removal issues. It's been three years now and I still have bouts with severe stomach bloating and rashes, occasionally turning yellow, severe headaches with vomitting, mental confusion after meals that are not really that big, chronic fatigue, daily back pain, not ever being able to sit up without pain, and dark urine.
When it's the worst I am usually not able to get to a doctor and by the time I get to the doctor the symtoms are better and I forget them and have a hard time advocating for myself how bad they are. (I get easily intimidated by doctors and start thinking I'm exaggerating everything and forget what the symptoms even are.)
I'm writing a list of symptoms so that I will not forget and I want to have a try at getting better response from a doctor, but I am wondering if anyone has any advice if the doctor minimizes my symptoms or declines to want to do any tests. I really want to know what is going on in my body and have professional opinion on what I can do to improve this. I would also like a professional diagnosis so that I could potentially get home health services when the fatigue is so bad it's hard to move. My family is helping but I have a young son and we could all use some additional services.
As you might imagine I have been struggling to work and do school with these issues and I'm not sure how to improve my economic situation without addressing these health issues. I'm planning on sitting down with the social services at the local hospital to ask about what services might be available and how to access them and I am wondering if anyone who has done this or worked with this system could offer any pointers for how to best advocate for the kind of help I need or knows what might be available for these kinds of conditions so I can try to assert I get the best that could be available if possible.