Well I, for one, got a good belly laugh out of this. I hope you don't mind! But I needed a good laugh. :)

I suppose your story would be downright shocking to most people who have never had to deal with neuros. But for most of us it's how the world works, unfortunately.

Keep trying, keep pushing them. You're right, this should make a normal person mad. Like Alice, I'm a little in awe that you're getting treatment. But ya, I sure understand that smacking urge. :Grin-Nod:

I think Alice was just trying to give some perspective with the best of intentions. I think everyone here, including you MK, are trying to do their best. It's hard communicating with text. People are easily misunderstood. I can assure you though that Alice is a kind and caring person.

Ally

Thank you Ally. I appreciate your kind response. Hopefully you will understand if I respectfully disagree with you here, and forgive me if I'm not exactly, how shall I put this, feeling the caring you mention. I also will not belabor the point, though, either, as I have said what I needed to say.

Thanks again,

MK

Hi Cowgirl,

I am glad that instead of smakcing your neuro, you found me to smack instead.

and yes, you are right that your life circumstances are none of my damn buisness, but on the other hand I have to admit that I am a bit tired of talking to people, who I really know very little about. putting a lot of efforts into finding the way to help them with advice and support, and sometimes sharing my own experiences and emotions with them, not really knowing who they are and what they are going to do with that. (and I think that you can go and see the respiratory thread and understand where I am coming from).

no, I do not think this is a contest of how misserable you are. and if it is I definitely do not want to be in this contest and clearly do not want to be one of the winners. and don't think I am. you too know very little about the circumstances of my life, but I can tell you that apart from this ******illness, and the way it was managed until now, I see myself as an extremely fortunate person, in almost every aspect of life.

over the last year I have been trying to help a patient, who became with time a very dear friend, to recieve the proper medical care that she deserves. and despite all my efforts, nothing has been done so far. she is only recieving mestinon, despite severe dissabeling symptoms.

I have also been trying to help other people, and realized that there is very little I can do, other then tell them to trust themselves and what they feel, more than what an uncaring physician that sees them briefly in his/her office.
and that if I really want to do something I need to try and change the way this illness is being seen and managed, by those who are supposed to take care of those patients. (something that I am now trying to do).

and like Ally said, I was just trying to put things in proportion for you.

and I think you are entitled to feel this frustration, and I did not say you didn't. I was not referring to the way you feel, but to what was happening.


and you say- I'm not sure who you think you are, but I know who you are not--someone from whom I'm going to take lessons on what I should and shouldn't attend to. and I can understand your anger, and feel free to ignore all of my advice, or any part of it that you want.

and last but not least, I do care about you, or I wouldn't have bothered to answer your post. and I think you are a very caring and sensitive person, and I am really sorry for what you have to go through. and I too had times when I wanted to smack , or do something unpleasant to my neuros, so that they will feel just a little bit of what they have been putting me through. and sometimes I actually did, by writing them very angry, but well phrased letters, that at least made me feel better. some which I actually sent them and quite a few that I didn't ( and I will be glad to share some of them privately with you, if it will make you fell better).

also, reading what you wrote now, I can understand the feeling of frustration. it sounds like you don't have any one that is really there with you, not your neurologist, that just sees you as a temporary patient, not your friends, who have their own life, although I am sure that if it was the other way around you would have been there for them.

when you say I have gone to EVERY doctor's appointment and about 98% of my treatments ALONE. I think of how lonely this illness can be even when you are surrounded by people who really care about you, and how lonely it is for you. and maybe this is putting things in proportion for me, and thanks for that.

so please, don't leave this site. if you feel that my presence here is bothering you, I promise to never respond to any of your posts again.


I have attached something that I wrote about loneliness a few years ago, just so that you see that I can understand.

Loneliness

There are not many things that can cause you to feel so lonely, as when you are surrounded by those that you love, and realize that they do not have a clue of what you are going through.
It is very easy to understand and emphasize with someone who is lying in a hospital bed, feeling miserable, having IV lines and drips. It is much less easy to understand the daily struggle involved in dealing with a chronic debilitating illness. People may even notice your hardship, but it is hard for everyone, and after all you have accomplishments just like they do, and maybe even more then some, so what's so hard about that.
They see you running in their race track. They see you even get to the finish line, among the first, every now and then. They do not notice the weighs that are tied to your legs. They do not realize that the 100 meter race that you share with them is a marathon for you. They only see you arrive on the finish line with then. They may even congratulate you for that. They will happily go to celebrate their accomplishment in the pub, and you will go to rest for the next few days.
They do not understand that winning a race for you, means mixed feeling. On the one hand you are very happy with your accomplishment, just like they are, but on the other hand, it means that you will have to participate in the next race, instead of dropping out. It means a new struggle. Can they run one marathon after the other?


alice

Alice,

I appreciate your response, and wanted to respond myself to what you have to say, so I have done so below.

I am glad that instead of smakcing your neuro, you found me to smack instead.
I'm sorry if it felt that way, as I didn't mean to "smack" you. I felt smacked by you and wanted you to know how I felt.

and yes, you are right that your life circumstances are none of my damn buisness, but on the other hand I have to admit that I am a bit tired of talking to people, who I really know very little about. putting a lot of efforts into finding the way to help them with advice and support, and sometimes sharing my own experiences and emotions with them, not really knowing who they are and what they are going to do with that. (and I think that you can go and see the respiratory thread and understand where I am coming from).
Yes, I do know where you are coming from as I did read that thread before and you and I have corresponded a bit.

no, I do not think this is a contest of how misserable you are. and if it is I definitely do not want to be in this contest and clearly do not want to be one of the winners. and don't think I am. you too know very little about the circumstances of my life, but I can tell you that apart from this ******illness, and the way it was managed until now, I see myself as an extremely fortunate person, in almost every aspect of life.
It's true that I don't know a lot about you and I haven't said anything about your circumstances, unlike you did about mine. I'm very glad that you feel like you are fortunate. I do as well in most areas of my life--I have much for which to be thankful.

over the last year I have been trying to help a patient, who became with time a very dear friend, to recieve the proper medical care that she deserves. and despite all my efforts, nothing has been done so far. she is only recieving mestinon, despite severe dissabeling symptoms.
I have also been trying to help other people, and realized that there is very little I can do, other then tell them to trust themselves and what they feel, more than what an uncaring physician that sees them briefly in his/her office.
and that if I really want to do something I need to try and change the way this illness is being seen and managed, by those who are supposed to take care of those patients. (something that I am now trying to do).
I have no doubt that you try to help people. I know you do. But I think you were somehow taking out your frustration on me--by implying that I should just be thankful for what I have and just shut up about what isn't working. THAT is the part that I didn't appreciate. I felt hurt, angry and humiliated by what you wrote. Just because I am getting better treatment than your patient doesn't mean I don't have feelings about what's happening or feel just as helpless in my situation as you may in yours. And please know that I really do get what it's like to try to advocate for patients and have it go no where and have to just sit back and watch someone get worse. This happens to me with my pts as well. I KNOW how frustrating it is!

and like Ally said, I was just trying to put things in proportion for you.
and I think you are entitled to feel this frustration, and I did not say you didn't. I was not referring to the way you feel, but to what was happening.
Please understand that I'm only speaking for myself here, but if you read my post, I didn't ask for advice, or help or to have my situation put into perspective. I didn't want that. I just wanted people to HEAR me, not help me. There IS no help for this situation. And you ASSUMED you knew about what was happening when really you didn't, and then responded from that assumption, which also bothered me because those are the comments you made that made it seem like I'm really lucky to have what I have and that the driving issue is somehow an inconsequential detail, etc. Those things really hurt me.
I know you want to help, I really do. And I know that you DO help! But perhaps you may want to consider that helping can consist of just listening and saying, "wow, that sucks." And you may want to consider that the way things seem to you may not be how they really are. And that when you start giving advice or trying to get me (and perhaps others, but I don't want to speak for them) to have a different perspective that what it can feel like is you saying "you shouldn't feel the way you do because . . ." or "you should do this and that and NOT do this other thing" which FEELS like you're just saying, "You're WRONG in what you think/feel/do." I'm not saying that's your intention, but what it felt like. (Hmmm . . . and here I am trying to give YOU a new perspective . . . should I be practicing what I preach??)


and last but not least, I do care about you, or I wouldn't have bothered to answer your post. and I think you are a very caring and sensitive person, and I am really sorry for what you have to go through. and I too had times when I wanted to smack , or do something unpleasant to my neuros, so that they will feel just a little bit of what they have been putting me through. and sometimes I actually did, by writing them very angry, but well phrased letters, that at least made me feel better. some which I actually sent them and quite a few that I didn't ( and I will be glad to share some of them privately with you, if it will make you fell better).
Thanks for saying that you care--I appreciate that. I also appreciate that you may continue to think that may be a caring and sensitive person. :rolleyes: I am perhaps too sensitive and this makes me react when I feel hurt and humiliated as I did in this situation. And I appreciate your willingness to share your letters with me.

also, reading what you wrote now, I can understand the feeling of frustration. it sounds like you don't have any one that is really there with you, not your neurologist, that just sees you as a temporary patient, not your friends, who have their own life, although I am sure that if it was the other way around you would have been there for them.
Yes, the situation with the docs is very frustrating. And while my friends do care, they do have their own lives. And yes, I have ALWAYS been there for them, because I realize perhaps more than they do how important that is.

when you say I have gone to EVERY doctor's appointment and about 98% of my treatments ALONE. I think of how lonely this illness can be even when you are surrounded by people who really care about you, and how lonely it is for you. and maybe this is putting things in proportion for me, and thanks for that.
I have literally gone to every MD appt for the last three years, including all of my appts with the surgeon prior to the thymectomy, by myself. With all of the plasma pharesis and IVIG and other treatments I've had, I've had someone with me a total of 4 times. So, perhaps you can see why it upset me so much when you implied that the drive time is somehow an inconsequential detail and that I should get someone to come with me. These ARE medical issues to me and not inconsequential to me. If this treatment makes me sick, it would be a very real problem to have to drive the 20 miles to my house, which in the afternoon traffic has sometimes taken me an hour from that same area.

so please, don't leave this site. if you feel that my presence here is bothering you, I promise to never respond to any of your posts again.
Your presence doesn't bother me, and as I said, and I really meant it, you have every right to your own feelings and probably more right than I do to be here. And you have every right to respond to whatever you want to. I would just ask that perhaps you consider what I have said about not making assumptions about what's true for someone else, and that sometimes it's more help to NOT try to help. :o)

I have attached something that I wrote about loneliness a few years ago, just so that you see that I can understand.
Thanks for sharing this with me. I can relate to this as I am also a professional who works with people who have NO idea what I have to do to try to keep working.

Alice, I appreciate your thoughtful and kind response. I really do. I apologize if it felt like I was smacking you. Please understand that I really did feel like you were attacking me and telling me that I had no right to feel what I do because my situation is better than the situations of some other people (which again I freely admit is the case), and I felt very misunderstood and hurt in terms of my own situation. I couldn't let that stand. There is no one here to take care of me except me and so I'm used to having to stand up for myself. I believe you if you say that wasn't your intention. I take responsibility that those were my feelings and I do own them.

If we can Alice, I would like to have any other messages between you and I about this particular issue to be by private message, if that's OK with you. And if you don't want to reply at all, that's fine as well. Whatever works for you, works for me. I do hope that we can be OK . . .

Thank you again. I truly do appreciate your time and effort. I hope that the New Year brings you all good things.

Cowgirl, I really feel for your situation and this is a great place to vent. I hate MG and I get frustrated at my doctor too.

(Now I am going to vent a little) I am really angry at my doctors accountants who keep sending me bills after I pay them in full on every visit. Why do they keep sending me bills? Of course they say they will fix them when I point out the mistakes and they admit right away that there was a mistake. But I keep getting bills from them and it causes me great stress! They are starting to add interest to my "past due" amounts that I don't owe!!!

I wanted to add that when I read what Alice wrote I cringed (I am not trying to cause trouble or hurt anyones feelings, but I feel it is necessary to say this). I too have felt hurt by a few things said here and considered leaving because I don't need added stress in my life...but still I stay since this is a great place to find support. I stop posting for a short time, eventually forgive, and then join in again (this has happened twice).

Cowgirl, I too am very lonely with this disease. I relate to what you said about your doctor. I think that your doctor should do his best he can for your situation, not just give you the average care expected, or the best he feels like giving you, you should get the best care available in your area. I felt angry about what he did in your situation. I would feel angry too.

Please stay here. I appreciate your posts and your complaints too.:D

For everyone, I think the variety of our experiences and personalities makes for a great discussion. Everyone is different and everyone, whether we have mild MG or severe MG, should post on what they are experiencing. Please continue to post.

Hey Cowgirl,

I just wanted to let you know that I relate to your angst re. this situation. I go to most of my treatments alone too, and sometimes, I feel sorta embarassed about it because I wonder what the nursing staff is thinking, not to mention the fact that the treatments are dangerous. I remember reading one of your posts re. a bad reaction to PLEX- I had the same thing happen to me a few times, twice after I had left the hospital and was waiting for the bus. I ended up racing back to the hospital to get tums because my right hand was going numb as well as my lips. The last time, after I got the tums and 'recovered' to whatever degree I could, I left the hospital, went to a park nearby downtown, and balled. Everything had come to a head. I felt like my life was over, I have this illness where I can't communicate anymore, I can't 'hide' it anymore from others and 'cope' with the degeneration to whatever degree I can without it affecting others' view of me, I'm on all these medications that don't seem to help much, and I'm alone.

Anyway, it's hard having a rare illness that affects us so profoundly, and not having a lot of support or others to relate to. You have found this site, though, so you have all of us, and we are all here for you.

I understand how you feel about your doc.. You're dealing with such a difficult illness and then you have to deal with administrative issues that aren't your problem at all. I've had this happen to me too several times. I even offered to do the administrative stuff myself once, just because it seemed so rediculous and I wanted to make sure it got done. My family doctor's office is terrible, I'm not going to sugar-coat it. They lose everything, and they don't fax or make calls that they're supposed to. Before I had my surgery, I asked them a month in advance to fax info. re. my MVP to my surgeon because he had requested it. Remembering issues that had occurred in the past, I as corgially (sp.? lol) as possible asked my doc's secratary to fax it to them-like three times. I asked in all different manners I could think of without being rude, but trying to drive the point home that it was really important and giving her all the numbers and names, everything she needed. She was like, "Yes, Nicole, I understand," Sorta flippantly. Anyway, she never did it. LOL:mad: The day before my surgery, the head nurse at the hospital had to call them and get them to fax it. She got mad at her (I was sorta secretly happy about that...lol). Anyway, it's a serious pain in the buttocks, and strangling, not slapping, came to mind, sorta like you see in old cartoons.

Sometimes when I read about other members' experiences here, I definately feel very fortunate that I have the tests to 'legitimize' my illness- even the tumour I had, can you believe it?! It's sick in a way, but I do empathize and understand how they are feeling, although it shouldn't make any of us feel lucky or unlucky because we are all still dealing with the same disease, it's just a different social dynamic with the docs., and yes, a difference between treatment and no treatment which is a very big deal. I was panic-stricken when i first started to experience my speech issues- I had already learned about MG and figured the cause of my problems were either that or ALS. I was petrified that my blood tests would be negative, because I knew that I'd run into all sorts of problems with diagnosis if that were the case, that there was a good chance I might not even be believed (for years prior to this, I've had joint pain and fatigue and all sorts of other issues that were blamed on depression/anxiety, even though I have Lupus antibodies too). I actually prayed that the blood test would be positive, so I at least wouldn't have to deal with being accused of being a hypochondriac or something- not being able to talk anymore plus that would be the straw that breaks the camel's back. The point is, though, that the treatment you're getting and I'm getting (minus the administrative problems lol) should be the treatment we're all getting. It shouldn't be considered 'luck' or 'good fortune' that we're being treated- it should be 'standard.' Not using common sense (speaking about the docs. some ladies here have to deal with) should be a gross exception, not the rule.

Anyway, sorry about the long post (I've been on a long-post rampage lately lol). You can vent whenever you want- that's what the site's for. :hug:

Nicky

Desertflower: Wow, that's terrible that they can't get that billing situation worked out! I can totally see how you would feel very stressed out by that. Financial stuff is stressful anyway without them continually making mistakes! I've had that happen only a few times and it totally freaked me out--I can only imagine what it's like when it keeps happening. Maybe there's someone higher up in the billing office that you could talk to . . . Anyway, I do hope they get that straigtened out for you immediately.

Thanks for your kind words about other things as well. I do appreciate your support! :) It all really does help.

NickNerd: No problem with the long posts. If you look around you can see I'm very guilty of the same thing! I'm very sorry to hear that you have had some of the same issues with treatment and docs that I have had. I have certainly spent my fair share of time crying about what I used to be that I'll probably never be again. And I've also sometimes felt embarrassed about going to all of these things by myself and having nurses, etc. look at me like I'm pathetic. I don't feel like I am. It's just the circumstances of my life right now. But I hate the thought that others may see me that way. And I can totally relate to what you said about the wanting the tests to be positive. I wish for the same thing! Not because I want to have the disease obviously, but so I can have some kind of irrefutable proof of what I have. I live in terror that the insurance company will start denying my claims because I don't have that kind of proof. And I'm not sure how to explain it but not having the positive test also makes me feel somehow even more like an outsider, like I don't even have the right to claim support or treatment for what I have because I can't prove I have it through bloodwork. Yeah, I can't breathe or swallow or talk or walk or lift things sometimes, but where's the freaking little microscopic bug thingie!? :) It's all so crazy sometimes . . . . And I do agree that the treatment we get should be standard. And I am truly grateful for what I have and that there is enough evidence of this disease (and again, I do understand what you said about even being grateful for the tumor because it provided some proof because I feel the same way) that I get treatment. And I'm also very grateful for my insurance company that has so far paid for everything, and for all of the people in my life who do help me when they can, and for this site and for a whole host of other things. God knows it's really bad sometimes, but it could be so much worse.

Thanks for your support as well NickNerd. I really can relate to so much of what you wrote.

I hope both of you have a great New Year and that it brings you better health.

thank you
 

Dear MK,

I wanted to thank you for making me understand how wrong I was.

you are perfectly right, there is no reason for MG patients to be greatful just for the fact that someone is ready to believe them and give them very basic medical care, that every patient deserves.

I keep on saying that we should fight against this, and make them understand that even if we have a very debilitating/life threatening illness, we are still the same people that we were before. we do not want to be treated with pity, but with empathy and respect. we want to recieve answers to our concerns and not the concerns they think we should have.

but, although in my personal life, I have and am doing that, I don't dare do it with my physicians. I only "give them a piece of my mind" after I realize that either way they are not going to do much for me anymore.

even though I have come on holidays to the hospital so that my patients could recieve treatment with as little disruption to their life and work, and have done everything within my abilities to help them lead a normal life as possible, realizing how important that is for their feeling of self esteem and possibly even their recovery.

I would not dare argue with my neuro about where I will recieve my treatment. I am ready for him to see me every three month, even though I see much less ill patients much more often. 6 months ago he suggested that I will start taking mestinon time span at night and promised to send me the perscription, which requires special approvals from the managment of his hospital. on my follow-up appt. I gently reminded him of that, and he promised that he is going to do it right away. 2 months have passed and I don't even dare remind him again.

the fact that I keep on having recurent life threatening episodes that require emergent respiratory support, that I have to have my respirator with me at all times, that I can't drive, and need assistance in the very basic actitvities of life, that I am using our savings to pay for all this, and that possibly some better treatment could change this, and why wait, is something I don't even dare to talk about.

but, compared to my previous neuros he is amazing, instead of questioning me, my coping abilities and clinical skills, he treats me with a lot of respect and keeps on telling me that he is learing from me and with me, about this illness. so I am ready to accept this without any complaint. and let him learn, as long as it takes him, seeing me once every three month. he mentioned rituximab, but suggested that we wait and see, so we are waiting and seeing.

the standard of care I require from myself as a physician is 10 times higher than what I am expecting from my own physicians. I just learned to accept that. after 4 years of recieving medical care that would fit the middle ages and not the 21st century, I guess that without even noticing it, my expectations have really changed. and although if I had a patient with such a complex illness that I felt I should better understand, I would probably see him/her on an almost daily basis, consult colleagues, read, and think about it, and feel responsible for every aspect of his care, even if it is not in the exact realm of my expertise, I find it perfectly reasonable that my neuro is not doing anything that even resembles that.

it's as if I live in 2 seperate worlds-that of my own clinical practice, where patients are treated with a lot of respect, and their needs are met in a timely manner. and that of my illness, where patients should be greatful for recieving minimal medical care, and treated with anything that remotely resembles human respect.

and you are perfectly right. this doesn't make any damn sense.

alice

Thank you Alice. I'm sorry that you're struggling to get what you need. I have struggled as well. My MD sees me only every three months as well, and has tried to make it longer than that but I have told him that I don't feel comfortable waiting longer and want to continue to see him every three months. And as I said, I've been switched to a new doctor more than once without even being asked what I want to do and once without even giving me any warning. I'm always polite about it, but really do try to not take no for an answer when it's important. I, like many people here, have had to fight to get care, get questions answered, get phone calls returned, get prescriptions called in, get treatment scheduled, etc. Believe me, I have a lot of anxiety about fighting my neuro about where I'm going to have this treatment, but I feel I don't really have a choice. I just don't have the option of having someone else take me and pick me up from a clinic that is that far away from my home every week for at least a month, and I'm genuinely afraid of getting sick from the treatment and then having to spend an hour stuck on the freeway trying to get home. I really hope that my neuro won't be so angry with me because I'm causing trouble for him that he'll retaliate in some way. And no, it doesn't make any damn sense. Sometimes you just have to fight because there isn't any other way. And that's the way it is for me right now. And maybe Alice, that's the way it's getting to be for you as well . . . .I wish you all the best in getting what you need. I really do. And I really AM grateful for what I have and for the fact that my insurance pays for my treatment, and I live in a big city where treatment is available, etc., as I said before. I appreciate those things and don't take them for granted at all--I know not everyone has those things. But my being grateful doesn't mean I don't also feel frustration and pain and especially fear when things don't work they way they should. And my gratitude also doesn't mean I have no right to ask for what I need when I'm not getting it. The two feelings do coexist and they don't cancel each other out. And it's the same for you. You can be grateful for what you have and also be mad at what you don't get!

Thanks for your post Alice. I appreciate hearing your thoughts.