Re: To Kim from Naa Koshie

[Guest guest]

Kim, I have been offline for a while, dealing with a few family issues, sometimes I have to turn inward to solve and face problems. I'm praying for you and your family and hope things begin to take a turn for the better. I agree with you wholeheartedly about the Dr. issue. In the beginning of my diagnosis I literally walked out of a doctor's office because he repeatedly would not listen to me and told me that if I didn't stop being so confrontational he would recommend discontinuation of treatment. I merely wanted a few more minutes of his time so that he could answer the questions I had brought with me to the appointment. I even had called ahead and

told the nurse that I would need a few more minutes. Although I was afraid that I would not get someone else to treat me, I walked out of there. I am still doing my best to be vigilant and stand up when I am not being heard. I pray that gets me somewhere and hope it lets the doctors know that we are to be treated with respect and listened to. We are the ones suffering from this disease. Living with the symptoms every day. We know a bit because of trial and error and because we are survivors. It's funny how having this disease has made my body weaker in some ways, but I am also stronger in others. I always thought I was a fighter, but now I'm more of a fighter but with a humble spirit and compassion for others. I guess sometimes you have to see the God in a situation in order to live with it. I am thankful. I have learned so much

from this group and have used that to get better results from the many doctors I see. Thank you for putting yourself out there. When you and others have shared in the forum, it may not have been for me directly, but I have benefitted from your and others open and honest emails. I hope that I can help others in this group in the future. Please rest up as much as you can. You deserve a break. I wish you all the best! Naa KoshieNeuroSarcoid66@... wrote: I've been home from the hospital the past three days, was in for 12 days before insisting to come home. As I listen to all the stories of Drs trying to decide if there is active sarc going on or indeed sarc at all I am dumbfounded at how so much progress can have been made over the past five years in the diagnosis and understanding of this disease and yet so little progress be made in actual patient care. I do not understand. I am deeply saddened and disheartened for each and everyone of us. Drs hold so much power in their hands and words, in thier demeanor and bedside manner, it is a shame that so many misuse it. When they take an oath to help patients and agree to take on a new patient, they should do so, if htey do not want to take the time to learn about the disease a particular patient has or do all they can to help a given patient they should just come clean and say so, give them a

chance to move on and find a dr willing to do all they can for them. or to at least treat them with dignity and kindness, or answer their questions. patients are people right? we are capable of understanding that not all patient - drs are good fits, not every dr wants to take on a challenging case, we understand. but its kinder to say so, hey my load is really full, im kind of in a comfortable spot with all my regular easy going MS patients and i dont want to rock the boat right now. wouldnt that be fine with most of you? they hold power in their ability to look up the newest research and treatments and information and pass that on to their patients or not.... that is POWER...if i have ever heard of it... and to misuse it the way some do, is no less than withholding treatment from a dying patient. just because you didnt know the treatment was there, is no excuse. you killed

the patient if you didnt keep up on your education and you were a dr. .... continuaing education was part of your job and responsibility to your patients. and to those who become upset when their patients bring research to them or question them about reports and results, or soemthing that they have read, we know you are only upset because you are feeling your inadequacies as a physician , your guilt at not doing your job fully and completely. you can hide behind comments to your coleagues that patients think they know everything. but thats not true, we are simply asking you to explain something most the time, things that you cant explain because you are not up on the research, which is okay, we dont expect you to be up on everything all the time, but when you dont have the answers, that pertain to one of your patients directly, dont you think you owe it to them

to go find them?? or point them in the direction of someone who does?? insteead of sticking your heads in antiquated answers and refusing to acknowledge that the information your patient has might, just might have came from some legitimate source? my heart goes out to each of you everyday as you gather your strength at teh beginning of each day to fight this fight, as you muster the courage to face yet another dr or go back to the same ones over and over again. and for the ones wishing their illness would get worse and they would be stricken with seizures and tias and whatever else they are hoping would strike them down, i simply have no words. for those in this group woh struggle with such horrible health issues on a dialy basis such comments are a slap in the face and an insult. so very disrespectful. imagine that i have been and others in this group struggling and suffering

many seizures daily and trying to fight my way through that, have suffered tias and been laying in a hospital bed very alone, to come back here and read someone writing how they wish tehse very horrid things would happen to them. its like looking down at someone having a stroke and saying oh damn it why isnt that happening to me instead..... then i could collect disability!! why do you have all the luck!!!! START COUNTING YOUR FREAKING BLESSINGS!!!! I wont say anymore than that, except this by the way, after all the things that i have done for a particular person, calling half way around the world to make arrangements for help with a local church that was never taken up on, sending medications, etc, that person hasnt even said hey how are you and i hope you are okay through all this..... just i wish what is happening to you would happen to me so i can

collect disability! good grief! i promise you if you start thinking of others and showing kindness your problems will disappear.............. sorry to go off a bit.....ive just had it.....from every direction , im so very tired, god bless you all, Kim NS Moderator