[mslux April 1, 2013 at 11:04 am Post count: 33]

#1177531

Hi Kimberly,

The voice issues, I had suspected were related to being slightly hypo for my optimum wellness. But yet voice fatigue, strain and throat pain occur when I become hyper. Is this most folks experience? Did anything help?

The PM was very useful in that it simply said there are folks on 2.5mg of carbimazole and half that again. As I don’t feel well on 5mg it might be something to consider.

I am very sad today really as I have lost so much a result of this disease and some times it really takes it’s toll. Singing is a very vital part of who I am.To not be able to do it is very painful for me. I have slept through Easter, absolutely exhausted, unmotivated and down.
It should not be like this almost 18 months post diagnosis. I am also in a public system where you are referred to an Endo clinic so you may just seen a trainee. Without private insurance that is the system here. I am simply too overwhelmed to fight and on days like this when I consider everything I have lost I feel a deep grief. and that’s the reality of it.

Ms Lux X

[KimberlyOnline Facilitator April 1, 2013 at 11:34 am Post count: 4294]

#1177532

Hello – Honestly, I haven’t pursued the voice issues, as it hasn’t had a big impact for me personally.

However, I do know that for patients whose vocal cords are damaged during thyroid surgery, there is some type of therapy that can help recover function. Perhaps consulting with a local surgeon to see who they refer to might be of assistance?

(remainder of post approved per request of MsLux)

Take care!

[mslux April 1, 2013 at 1:40 pm Post count: 33]

#1177534

Hi Kimberly,

I had pm’d you to request that you remove your above comment as I find it to be inappropriate and an overstepping of your boundaries as moderator.
You are by you own admission, not a healthcare professional.

Graves disease is an often debilitating and profoundly disabling condition. The loss of one’s previous health and functioning that can accompany this would certainly warrant a grief reaction that would be healthy and not considered pathological. Paternalism in a space like this one is not a suitable approach. We are all adults and are quite capable of taking care of ourselves and managing our communication on the forum both public and private.

I also would caution you against assuming that posters themselves are not healthcare workers.

Your intervention was unwelcome, however well intentioned. I would therefore be very grateful if you could respect my request and remove your comment.

Regards,

Ms Lux.

[KimberlyOnline Facilitator April 1, 2013 at 4:13 pm Post count: 4294]

#1177535

Hello – Certainly no offense was intended with my post. Although I am obviously not a healthcare professional, I have had contact with plenty of patients over the years who were dealing with an underlying issue in addition to Graves’ that improved with proper treatment. I was simply providing some food for thought – *not* making any type of judgment and definitely not making any sort of diagnosis!

It’s important to keep in mind that this board is a *moderated* forum hosted by a U.S.-based non-profit 501(c)(3) charitable organization. The Graves’ Disease and Thyroid Foundation is run by an active Board of Directors, operating under a specific set of bylaws. This forum is provided as a service to patients, honoring the guidelines set in place by our Board.

If there are ever concerns that our online forum was not being operated properly, this could affect the Foundation’s ability to get insurance – which in turn would impact our ability to provide patient conferences, host local support groups, and advocate for patients at national physicians’ conferences.

Obviously, there are advantages and disadvantages to participating in a moderated vs. unmoderated forum. Some members here prefer the moderated format, while others choose to participate in both.

[mslux April 1, 2013 at 7:33 pm Post count: 33]

#1177536

Hi Kimberly,
I have asked you twice to please remove your comment. If you refuse to respect my request I will have to take the matter further. Again, I reiterate I found your comment inappropriate and unwarranted and it over steps the boundaries of your remit as a moderator on this forum.
Therefore, I am requesting a third and final time for you to please respect my request to remove your comment which I consider personally defamatory and which you have no medical or legal basis for making.
As a moderator on this forum you are a representative for the Graves Disease & Thyroid Foundation and your opinions expressed and recommendations made can be deemed legally to be those of the foundation. It would be advisable at this juncture to reflect upon this. I have read through your other posts as moderator and there are a number of anomalies.

Regards.
Ms Lux.

[KimberlyOnline Facilitator April 2, 2013 at 10:26 am Post count: 4294]

#1177533

I ran the original post past a GDATF Board member yesterday for feedback, and was told that my response was appropriate — and that in fact, I would have been remiss to *not* raise the issue as a possible suggestion. However, at your request, I have removed the comment.

Also, I have been advised that “several members of this forum” have contacted you privately to state that my posts have been “inaccurate and irregular”.

I work as hard as I can to promote the GDATF’s mission to “educate, encourage, and empower” — but at the end of the day, I’m a Graves’ patient. In many ways, I’ve come out better and stronger from my experiences, but I’ve also suffered losses from Graves’ just like every other person on this forum.

If someone spots an error in a comment that I have made, I would truly appreciate being contacted directly, as obviously we wish to provide the best information and support possible to our members.

[MaryI April 2, 2013 at 12:32 pm Post count: 34]

#1177537

Ms Lux,
I feel that your attack on Kimberly is unjustified. These facilitators perform a a very important function on this forum. If you feel that a comment on your posts, with an suggestion that may help you, is inappropriate, perhaps you should not be spilling out so much information on a public forum on the world wide web.
I have been on the Graves Forum for over 2 years and have not seen such rudeness to one of the facilitators until now. Keep up the great work, Kimberly. You are appreciated!

[mslux April 2, 2013 at 2:18 pm Post count: 33]

#1177538

Hi Kimberly,

Thank you for finally respecting my request and removing your comment. I will be writing to the board of the foundation regarding the moderation, the privacy issues with the site and it’s ambiguous disclaimer.
I’ve been informed that the role of the forum is to strongly push the position that treatment leads to a good outcome for the majority of Graves patients and that any exploration or suggestion of either experience or clinical data that contradicts this is not explored.
It has been my experience that the foundation’s forum is heavily controlled by moderation to an excessive degree.
It’s paternalistic in it’s approach which will not suit everyone but furthermore information given does not accurately reflect a range of experiences of Graves and I believe this has a very silencing effect on the dialogue.
Forums for patients should be safe spaces and comments like the one preceeding mine have no place in the discussion. There should be no need to edit our experiences as honest disclosure of what the illness can involve gives space to those also suffering to speak up.
It’s then that meaningful exchange takes place. And if grief is part of that process then that
is ok too.

Regards,
Ms Lux.

[SueAndHerZoo April 2, 2013 at 3:00 pm Post count: 439]

#1177539

Mslux.
With all due respect, can you perhaps explain why it is you want to escalate this? Even though I found nothing wrong with the posts by Kimberly, you apparently did and she has since removed them. It was a rather odd request to ask a moderator to remove one of her OWN comments (I’ve seen forum members regret something they said and ask that it be removed) but she was gracious enough to abide by your wishes.

If we are all here to offer support, share experiences, and hopefully gain some insight and education, why would you want to keep this subject matter going rather than putting it in the past and moving forward by continuing to offer information and support?

Many, many people count on this forum and it would be a shame to jeapordize it over something that had absolutely no malicious or negative intent. As was stated:

“If there are ever concerns that our online forum was not being operated properly, this could affect the Foundation’s ability to get insurance – which in turn would impact our ability to provide patient conferences, host local support groups, and advocate for patients at national physicians’ conferences.”

I am an active member of many, many forums and this one may possibly be one of the best moderated ones I have joined.

I’m sorry you are not feeling well and sometimes feel defeated but please don’t take out your frustrations in a place or in a way that could hurt others. We are ALL patients and we are ALL suffering.

If you’re still reading, thank you for your time.
Sue

[mslux April 2, 2013 at 4:25 pm Post count: 33]

#1177540

Hi Sue,
I think it might be best for you to read through the thread. It’s self explanatory. There were in fact three separate requests, including a pm, asking that the comment be removed. It was not willingly done and was only finally amended when I emailed the foundation. I consider the matter dealt with and will proceed in addressing my concerns with the board. I have in fact requested that the full thread be removed. I am glad you find this resource helpful and the moderation style suits you.
I myself will seek a less controlled environment to exchange information and support related to Graves.

Regards,
Ms Lux

[Naisly April 2, 2013 at 5:47 pm Post count: 143]

#1177541

I’m sorry, but I have to side with mslux on this one.

And I’ll explain why.

She spent her time and effort to write a very thought out post. Stating how doctors were treating her, she cited plenty of evidence to base her facts on.

She knows this is graves related and was looking for answers on how ‘we’ graves patients deal with it.

She only wanted affirmation from other people, more than likely to put her mind at ease. YET…

Kimberly you basically slapped her in the face with “…other underling issues, perhaps you need to see a different doctor…” (sorry can’t remember the exact wording)

You basically said she had cognitive issues from something OTHER than graves.

So either you were not paying attention to the post, or you do believe it to be caused from something other than graves.

And yes, you do this quite often.

[ChristinaDe April 2, 2013 at 7:24 pm Post count: 115]

#1177542

Sad thread.

[KimberlyOnline Facilitator April 3, 2013 at 4:27 pm Post count: 4294]

#1177543

mslux wrote:

I have in fact requested that the full thread be removed.

@mslux – Instructions for requesting removal were sent yesterday via PM, but I am re-posting here as well:

“If you wish to remove only your posts on a particular thread, you can go to your post and use the “Edit” or “Delete” button, which you should see in grey at the bottom of each post.

This approach will allow the other personal stories that were shared can be left up, as this general topic was obviously of interest. However, if you wish to have the entire thread removed, you can send your screen name and thread title to info@gdatf.org and it will be removed. If you would prefer to not receive further contacts from the GDATF (such as e-mail newsletters), you can state this in the e-mail.”

@Naisly – Those who saw my original comments (including 3 GDATF Board members) know that your paraphrasing is incorrect. However, unfortunately, I am not able to clarify without starting another downward spiral of negativity.

[SueAndHerZoo April 3, 2013 at 5:51 pm Post count: 439]

#1177544

We’re all just people helping people but sometimes that goes terribly awry either through a miscommunication, a mis-interpretation, or an intentional negative attack. We’re human beings and we all suffer from medical issues that often affect our moods…… it’s bound to happen.

We need a group hug, a dose of amnesia, and a commitment to helping each other feel better, not worse.

Thanks for all you do, Kimberly.
Sue

[Naisly April 3, 2013 at 6:35 pm Post count: 143]

#1177545

I did read it before it was removed.

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