Letter To My Doc

[morgan617]

In the last year I have given up entirely on trying to feel better. My doctor doesn't return my calls, I haven't even seen him since last August. He refills my meds and that's it. I see my MDA doctor once a year now, and she has no clue about my disease either. I get dilated every eight weeks for esophageal "problems" he wouldn't write strictures, although last time he almost didn't get the darn thing down, it was so tight.

So, then I realized I had let them off the hook. I mean, I was like them, or even worse, just content to continue to go downhill and die. While these guys stood by and just made believe I wasn't dying, just a bunch of conversion disorders. (I made Dave promise that my obit would say I died of complications of conversion disorders. He will absolutely do this.)

So, I wrote my doctor a letter, gave him some info and told him to do whatever he wanted with it. I had done all I could, and had exhausted every means of trying to feel better. Now it's in his lap and his responsibility to do something, as I DESERVE to feel better, if there is a way I can. I told him I had given up, just like all my doctors had, and that put me at their level, and that was unacceptable to me. If I am going to die, it's not going to be because I didn't try, it will be because my doctors haven't.

I felt so much better. Empowered, I guess. I told him to do nothing if he thinks I'm crazy and to make some effort if he doesn't. I don't care either way, because I know, that even if I do suffer from some mental health issues (and who wouldn't, under these circumstances) I am not making this up. When I'm gone, he will have to live with that. I will be gone, so it won't matter to me. But I will know I have done all I can.

It was freeing. OH, I haven't heard from him.....LOL. But I still feel better....morgan

[Ernie]

Hi Morgan,

I am so sorry you are not getting any support from your PCP. Do you think that your GI doc could refer you there? Just a suggestion.

I so wish you could have a chance at getting better and having improvement like many others on the list.

[mrsdavidson8605]

Hi,

first of all, I am so sorry that you are having to deal with this issue with your doc. Be ASSURED that you are not the only one. I know that doesn't help you physically feel better, but I can honestly say I know EXACTLY what you are going through. I've had numerous docs blow me off. I've had a mayo doc tell me there's nothing more he can do. I know how frustrating it is... so much you just give up. I have... but then, somehow I am able to get up and keep moving...hopefully you can find strength to do the same. You're the only one who knows exactly how you feel, unfortunately, for those of us with these problems, it's hard to get the rest of the world to believe/understand us. Wouldn't it be nice if we didn't have to explain ourselves and validate our stories, but just get medical help like the rest of the population? ahh just a dream I guess...

anyway, I'm happy to hear someone writing a letter to their doc. I have thought about doing this, but i'm waiting until this whole surgery thing to see if this is the end of my troubles.. Have you thought about having an advocate? This is something I did a few months back.. not that I am not able to handle my own business, but, I have found that my husband gets a lot further with docs than I do. I know that sounds CRAZY but it's so very true! He has basically taken over for me, by calling, scheduling, and keeping records for me (hard to do when you're in constant brain fog!) He has been such a help. At times, he's had to get TOUGH with the docs, but it works! ) It's like a big burdon taken off my shoulder.. Plus, he can soften bad news from docs and relay it to me (I feel like a kid sometimes, but it's worth it to me)... just a thought...

Hang in there! there's always another turn, another door to open.. never give up hope!!

[Sophia3]

Hope you get an answer at least and a referral to SOMEBODY from SOME DOCTOR! How frustrating!!!!!

[corina]

well done, morgan!!!!!

i can imagine how you must feel now. the feeling of being freed. you have done everything you possibly could. despite everything you have been told by doctors, and even believing what they said (i am glad that was just for a very short time!!!). you know there is something wrong and you've done all you could. it is up to them now to take some responsibility for your health. that's what doctors for: try to understand and try to help. if only they would give you the feeling that they understand . . . that would make you feel a bit better.

i am very proud of you morgan. writing this letter tells me you are a very strong person (which i already knew, of course!!!) and please don't any doctor dare start the "mental health" issue again!!!!!

love,

corina

[morgan617]

Well, I got a letter back from my doctor and he totally reamed me out

He said I was sarcastic and he was sick of it. I can't remember a single thing I said that was sarcastic or aimed directly at him. He was so mean, I bawled for 3 hours or so. He said he was more than happy to give me referrals, but was sick and tired of my attitude.

It was horrid. I wrote him back and said that i thought it was one of the "flattest" letters I have ever written and I had no idea of how I had offended him. I told him I was sorry i had, it wasn't my intent. But I am tired of feeling like ****. He admitted he had no idea of what to do for me. Well, how about some referrals to someone that does then?

I can not afford to lose him as my primary, because no one else would take me on...I am not being dramatic...this is the truth. I don't feel good about it anymore, just like I've been blasted with tnt or something. So, that was a disaster. And the fastest he's ever responded to me.

I'm crawling in a hole and giving up for real.....morgan

[corina]

morgan, i am sorry this happened. my thought was, that he wouldn't answer the letter, not becuase you are "nuts" but because he wouldn't like it. still you are in need of this doctor.

sarcasm always is/was my way to survive. people don't like it. my pt (who is always there for me) once asked me to stop being so sarcastic (about myself). my family doc is my very best (medical) friend, still i was very sarcastic towards him, even till the point where he asked me to stop doing that. in his desperation (i guess) he asked me: is it all my fault then? and i yelled at him: YES IT IS!!!!!!! and while he walked towards the door (he came to see me at home) i yelled: yes walk out of here (i meant of me) at least you can. he never came back to me, until i called him and asked if there was a chance for us to come to speaking terms again (we have this beautiful expression in our language where we say: smoke the pipe of peace. this is litterly, it's from the old indians smoking together to become friends, i do hope you know what i mean). and he was glad that i called. but: i am very sure he wouldn't have called himself. we are best friends again, because i wanted to. not just because i need him, but because i want him.

the doctors i've consulted give up when they don't know. i am not their only patient and i am not their first concern, i know that and accept that. but i know my doctor hates what's happened to me and for me that's enough. he has done all he could and there's nothing left. now i just want him to be honest to me (and nice of course ).

maybe you have been sarcastic, maybe it is just his ego, who knows. i hope you can become friends again. writing the letter was a very good thing: you gave him insight in how you feel. and maybe he feels just like you but frustrated about not being able to help you out. he has to deal with hospitals (other doctors, with their ego's) as well and who knows how many times he has been told that he is too concerned about you. he might have started to believe that. by writing him you stood up for yourself and that is important. hold on to that morgan!

as i am writing you in another than my own language, i hope i've chosen the right words morgan. and that you understand what i mean and how i feel.

be proud of yourself,

corina

[Ernie]

Hi,

You sent him a letter of despair and he took it personally. Instead of acting up on it and taking charge of doing something positive he felt threathened.

Maybe you could explain to him how you feel, that he is your last hope to be referred to a specialised center for PP and that you would really want to go there to have a chance to improve your health.

[morgan617]

Thanks Corina and Ernie (I totally got what you were trying to say Corina)

I did write him a letter and I did apologize. But I do wonder, is he upset that I get sad and frustrated and let him know, or is it just his ego, because he can't help.

I think about my life, and I wonder. If he woke up tomorrow and:

He literally lost the ability to work in one day, he lost his license to practice medicine, he got shunned by family and friends and actually lost every friend, he was called psychosomatic, attention seeking, hysterical, he fell down and couldn't move, in two months he went from walking 2 miles a day to needing a wheel chair, his BP went from 200/120 to 90/40 in 3 heart beats, he needed a pacer at 51, he fell down and broke bones, had to hang on to things to get around, lost his driver's license, had to depend on his family to get him anywhere, lost 50 pounds and had to eat baby food, paralyzed and couldn't talk or move, couldn't go shopping, or out to eat, or to church, couldn't read longer than 10-15 minutes, couldn't stay on a computer more than ten minutes, had pits on his corneas from his eyes being so dry, couldn't have sex anymore because his partner thought it was going to kill him and it almost does, his doctors stopped returning his once every 3 or 4 month calls, refused to give him referrals, he couldn't work on his house or in his yard, he had to depend on someone else to support him and watched them killing themselves to do it, couldn't take care of his family, his gut was getting killed by his meds, then

would he EVER get frustrated, would he EVER get angry, would he NEVER vent?????

I don't think so. I have never once asked him to cure me, I have never once said it's his fault I don't feel better. If just once, I could go into a doctor's office and just get validated by them, without anything else, (like, I know how sick you are deb and I'm sorry...as opposed to I know how sick you are deb, but there's that psych thing too) maybe, just maybe, I would feel better. And if maybe once every couple of years I vent out my frustration, is that a horrible thing? I'd like to meet ONE person on this earth who has never gotten angry at someone when it wasn't justified.

He demands my validation that I still think he is a great doctor, which he is and I do and I never say, "but" I tell him unconditionally. But I am not allowed the same thing and if I ask for it, I get a letter like this. So, not only do I get to be sick and just exist here, as opposed to living in any way...I don't even deserve any validation and no one hesitates to let me know in no uncertain terms.

As you can see, I didn't fall asleep very quickly last night. So, I sent him a letter validating and patting his fragile ego, and I am the bad guy. For having something I have no control over...again. It's not his fault he can't fix it, but it's not mine either!

I think I have a right to be sad and maybe sarcastic sometimes, I have lost my entire life and some days are just dam harder than others, and I think they should understand that. Back in my hole, but am I wrong?

[corina]

morgan,

you are absolutely right. i have been thinking this same thing over and over: if only people would know how it feels and how it is not being able to controle your body and your life. and i have said to several people: i wish you could be me for just one week (i was afraid that just one day would be forgotten to soon ). but it's just not possible. and then i tried again with my hubby as i know he tries but he can't fully understand (feel) how it is. and during one day (or actually half a day as it drove him crazy) i told him: no you can't get up right now as you feel to dizzy. no you have to take the lift (i have a stair lift) as walking the stairs is impossible for you (the thing is sooooo slow which made him feel like a fool). oh no dear, you can't take a cup of coffee right now as you are too nauseous to walk to the kitchen and get it.

to make a long story short: he hated it but still doesn't know the feeling. but this is what i would want all my family, friends, neighbours, doctors and everyone who asks me what is wrong with me to experience. and i would be VERY happy to teach them!!! i don't want people to be sorry for me, just want them to know how my/our life is.

and that is why i love this place so much. people do know how i feel, even while there are so many differences between all of us. i feel safe and understood. and i do hope that the film that will be made, will contribute to better understanding.

so no morgan, you aren't wrong. i hope you can climb out of your hole and try to live the life that is left for you.

love,

corina

[Maxine]

I'm sorry Morgan-

One thing I have done is not use the forms the doctor's office have you fill out to transfer records. I control all my medical records myself, and forward only the ones that are supportive of my MEDICAL issues. Every doctor I go to is going to know I review all my own records, and they will have to answer for it if they put inaccurate reports in there that do not pertain to my MEDICAL PROBLEMS. It's not up to a medical doctor to give you any kind of psyc diagnosis, and if they think you have some psychological issues, then they can refer you to a psychologist. Then the psychologist can keep their own records pertaining to any psyc issues.

With each visit to a physician, I go a week or so later and obtain the copy of the clinical notes, and any testing done. By doing this I control what medical records make it into the hands of any new PCP I may choose. I have fired so many, and starting in 2001 I started controlling my own records. Any negative material will never be seen, and eventually anything the PCP gets will only support my medical conditions.

A new PCP can't retain records unless your give permission by signing a release. Don't give permission to any docs to release your records, unless it's to a specific doctor you trust will take your medical condition seriously. Be careful what you sign when seeing a new doctor. We get tired, weary, and find ourselves routinely signing things without thinking when seeing a new doctor.

You have a right to have your medical problems taken seriously. Unfortunately, only you can control this, and it's very sad because I'm sure you feel too sick to mico-manage your records, but if you want to be taken seriously, you have to control

your own records. (I don't know if you already do this).

In the end, if I don't trust a doctor who isn't taking my health condition seriously, I fire them. I feel if I let a physician who I don't trust treat me, then I won't have accurate information pertaining to my true medical conditions. If I do have some medical records obtained by myself that aren't accurate to my medical conditions, I simply destroy them.

I hope you can find an end to this nightmare soon.

HUGS,

Maxine :0)