MS 8/5/08 Post Feeling alone

I have pages and pages (15+) of forms to fill out for the new doctor. I am so not looking forward to a new doctor but I am going to try. His office called to make sure I have the last set of labs so that he "knows what we are dealing with." This new doctors office does Endocrinology and Diabetes. It has been suggested to me that the office really focuses on the diabetics, which I am not, yet. I am trying to think positively that they will address the endocrine system issues as I believe that is probably the biggest challenge to my health.

Fortunately, I do have the prior labs but I so wish I could find a doctor that would start with a clean slate. Yes, the prior labs and labels are to be considered but set those aside and make a diagnosis based on their own knowledge. Take away all of the labels and listen to what I (the person that lives in this body) know, what is going on with me, and not just hold their hands up saying "I don't know" and either push more anti-depressants or a new shrink on me. Hell yes I'm depressed! Wouldn't you be?!?! But throwing more ADs at it does not help. I played their game for too many years. I deferred to their "knowledge" and did whatever they told me to do but they were not listening, not paying attention. When my shrink realized that what I was describing was so much more than depression, he suggested a sleep study, and he was right that there is sleep disorder issues. That was a step in the right direction. Now I'm 8 YEARS down the road and still struggling way too much. I am not convinced that I have Narcolepsy, the legal speed that they prescribe for that has not helped and a couple of other "specialists" disagree with the diagnosis of N. As I've told many doctors, I don't care what label is on it. I just want help to feel better. I don't think I am asking too much. I've been told to just accept the diagnosis that I've been given, and accept that my quality of life will be what it currently is - crappy.
It seems that this is a cycle. I accept what they tell me, try to do whatever they suggest, and get back in to situational depression because I am barely existing. Then there are the times when I am not willing to just accept. Doctors "practice" medicine. I realize that they do not have all of the answers. I am not asking them to be all knowing. I am asking them to really listen. To pay attention. I've been to too many doctors that don't even look at the forms, labs, testing information that I do provide only to decide that there is nothing they can do for me -- but, of course, come back in a couple of months so that he can tell me the same crap. What I am asking for is for someone to at least TRY, not just dismiss me.

Of course, this stuff pushes a lot of other buttons. My family was/is really good at discounting me, ignoring the obvious, and not listening. No matter the bruises, the attempts to keep my bedroom door locked, the verbal, mental, and emotional abuse hurled at me just for existing, etc. I remember one time when I was really sick, obviously sick with 104 degree temp and chills. My family went out to dinner, leaving me home alone.

Knowing that I have cognitive challenges as a direct result of the abuse....... can't go there right now.

I am so angry today. Struggling not to turn that anger in on myself as I don't know where else to put it.

I don't want to go in to my appt tomorrow angry. I want to be assertive. I want to be an advocate for myself but that is so much easier said than done. For too many years I was just dismissed as being lazy, depressed, wanting attention by "professionals". If they had just looked at why I was less than the energizer bunny, why am I depressed, and why I am seeking attention for serious health challenges they might have seen a patient needing help.

Yes, I do have a laundry list of situational reasons for depression but I am actively processing that junk and moving past it. I have had lengthy conversations with my therapist, my shrink, and a few (relatively) close friends that know me about whether my mental health challenges are manifesting themselves with physical challenges. It is clear to them, and even me, that there is way more to the picture than depression. I was doubting myself when I really do know better.

Being chronically ill with what is invisible....... sucks.

As a kid, sick even then, I used to wish for visible signs of illness, something that they would pay attention to and help with because it was obvious. As a young child, I used to wish for a broken leg. I thought that would get me to the hospital (where I would have to stay) and then they would see. Even then I knew that there was more wrong with me physically than anything that could be seen.

I feel very alone with all of this. I don't understand so I could I possibly explain it and how can I possibly expect anybody else to understand.

Rambling....... please don't mind the purging, necessary as a lot of this stuff IS toxic and effects my physical health.