Dear Megan,

The wide eyed look my Endo gave my was because he gave me was out of concern and it was cute really. It was like she went through Rad/chemo bam bam and was gearing up for what was next so soon. He was surprised that I asked that question about menopause and was thinking the best response to answer it and he did. I’ve never been made to feel that my questions were dumb and of course doctors don’t have all the answers. Mine will say "I think this or I never heard about that..." and another one who I adore will say "my training teaches me this ...." I feel that I needed to point that out. I asked Jan B. about it because I thought she might of had some experience with it but it didn’t happen yet. The cancer caught them off guard and the symptoms could of been anything and does this make me frustrated as h___yes actually more scared than anything but it proves that they don’t have the answers and are making  the best educated guesses. Scary is when a doctor that couldn’t  six months ago that couldn’t go into testing for you in the hospital and picked the easiest treatment path because he was more vested in keeping the costs down for your insurance company, gives you look and says I’ll pray for you and walks away. You are on your own to fight and gather the strength that you will make it.

It was the Nurse Practitioner that wrote when I told her about the burning pain that it wasn’t believed  and being the person that I am will point that out again. This could be related to miscommunication and her not having the background info about Radiation and that’s my frustration. Is she against me or thinks I’m stupid? No.

I think that it is the insurance companies that have something to do with why doctors don’t go after (explore the reasons) why something might be happening with a patient and I’d think that they’d like to but there isn’t enough time because they have to see X amount of patients to cover the cost of their health care business plus they have to justify what they do for the patient in this day and age to guard against being accused of being gold diggers and ordering to many tests and what about your insurance will cover this but not that? and I have to pay how much out of pocket...geeez I just don’t have it at this time what a headache all around and where is medicine?They are to busy trying to treat the situation as it comes along when or if they find it first. 

My Endo doctor talks about what may happen if I keep the weight on because he mentions diabetes. I think they are more straight forward because of the chronic condition but they aren’t w/ you 24/7 and you try to eat better or think you eat better but I read that Most Americans don’t eat the recommended amount of fruits and veggies anyway. He is big on the weight issue and he is right plus being supportive in a doctor way but unless he is going to knock on my door to take me to the health club or order my food, it’s my choice to decide and find in myself how to keep my weight down.

I think they hope for the best also I wonder if there is a sense of frustration on their part that inside they realize that for example the med that we take has side effects that are agitating but it’s the best that is offered right now. You go to med school because you are highly intelligent and you like science and for the most part you like people and want to make things better but the medication that you provide isn’t all that perfect and you don’t have all the answers about what an outlaw defective defunctive adrenal gland does to the body as someone ages. I think that they may feel helpless in that for some things it really can’t be made better or they just don’t have the answers and that creates frustration over expectations. Would you want someone staring at you wanting you to make it better and you can’t? through no fault of your own though. I don’t think that they are worried about our skills or intelligence to process something but they are worried what we might do with that information because in reality doctors don’t know if someone is going to have something or not or how how that specific person’s body will handle it and they don’t want someone to worry about it or maybe they think it might be a lack of trust on our part which it isn’t.

 

What if it isn’t the CAH also? that is a good question? These people in their 50’s are the first ones that survived because of treatment and it will be awhile before information can be gathered so that there will be some outline of what might happen pecentages wise in the population of older people just like the gathering of info to help make the dosing treatment as children better. I never went through early puberty and I didn’t have weight gain as a child and I can thank Jan B. for that because with out her  Dr. Bacon who must be ancient by now wouldn’t of been able to figure out what was right or bad in dosing.

That’s my ramble ...peace,

Aimee