[Tsundoku]

Briar King, on 26 February 2015 - 04:16 AM, said:

Sherveport Louisiana was covered in snow today! I'm so fucking jealous of my northern state neighbors it's not even funny! It just rained all morning for us. Thanks a lot Gulf.

Isn't that where Eric from True Blood hangs out? I guess it'll be OK for him since he's a 1000 year old Norwegian.

[Andorion]

What do you do, when somebody you have great affection for says something extremely bad and hurtful and even after you responding negatively does not really seem to understand what he has done wrong?

[Mezla PigDog]

Andorion, on 26 February 2015 - 05:15 PM, said:

What do you do, when somebody you have great affection for says something extremely bad and hurtful and even after you responding negatively does not really seem to understand what he has done wrong?

If it is the first time the person has been mean then explain but give them the benefit of the doubt if they really don't get it. Decent friendships/relationships require a long term view. The opportunity may arise in future for you both to see the subject in the same light. If they do similar things in future then move them to a different category in your life such as ex-friend or casual acquaintance.

[Nicodimas]

Andorion, on 26 February 2015 - 05:15 PM, said:

What do you do, when somebody you have great affection for says something extremely bad and hurtful and even after you responding negatively does not really seem to understand what he has done wrong?

With Mezla on this:

As long as this wasn't a foot in mouth moment...which it doesn't sound to be the case.

Boundaries are a very important area in life to determine and establish well through good communication. I admit a few situations myself where it has been tough. It sounds like someone hit your line on your sand and you told them this is not cool in some shape or form?

If not understanding and you made the attempts to communicate this, it's up to you how to withdraw. For me, I don't make to many compromises <well...> if it continues, withdrawing may be needed. Life is full of negative energy and you have to decide if you want to deal with that from someone you actually are putting in a greater percentage% of thought than they you. Peoples behaviors can change if you go about it the right way in communcation..otherwise plenty of people, plenty of different options exist.

Think that makes sense.

[amphibian]

I had a break up in which that same issue was a big factor. My partner of for years didn't want to accept her hurtful comments were being said or that I was indeed being hurt, therefore she didn't need to change anything.

I am a year and a half past that and believe now that it was a sort of revenge taking for my not moving to Iowa to be with her in the year and a half prior and for my family not initiating the Nepali marriage talking process. She did stuff like that, not because she was a bad person, but because she was frustrated and hurt and I was indirectly and directly the source of that. In her view, I'd already hurt her, so it was ok to take wildly unfair shots at me.

In retrospect, my family looks kinda smart for not getting us hitched. We would have been disastrous five years down the line.

[melonhead]

Thanks for the support everyone. Sis starting chemo soon.

[Andorion]

Mezla PigDog, on 26 February 2015 - 06:25 PM, said:

Andorion, on 26 February 2015 - 05:15 PM, said:

What do you do, when somebody you have great affection for says something extremely bad and hurtful and even after you responding negatively does not really seem to understand what he has done wrong?

If it is the first time the person has been mean then explain but give them the benefit of the doubt if they really don't get it. Decent friendships/relationships require a long term view. The opportunity may arise in future for you both to see the subject in the same light. If they do similar things in future then move them to a different category in your life such as ex-friend or casual acquaintance.

Nicodimas, on 26 February 2015 - 07:19 PM, said:

Andorion, on 26 February 2015 - 05:15 PM, said:

What do you do, when somebody you have great affection for says something extremely bad and hurtful and even after you responding negatively does not really seem to understand what he has done wrong?

With Mezla on this:

As long as this wasn't a foot in mouth moment...which it doesn't sound to be the case.

Boundaries are a very important area in life to determine and establish well through good communication. I admit a few situations myself where it has been tough. It sounds like someone hit your line on your sand and you told them this is not cool in some shape or form?

If not understanding and you made the attempts to communicate this, it's up to you how to withdraw. For me, I don't make to many compromises <well...> if it continues, withdrawing may be needed. Life is full of negative energy and you have to decide if you want to deal with that from someone you actually are putting in a greater percentage% of thought than they you. Peoples behaviors can change if you go about it the right way in communcation..otherwise plenty of people, plenty of different options exist.

Think that makes sense.

amphibian, on 26 February 2015 - 08:00 PM, said:

I had a break up in which that same issue was a big factor. My partner of for years didn't want to accept her hurtful comments were being said or that I was indeed being hurt, therefore she didn't need to change anything.

I am a year and a half past that and believe now that it was a sort of revenge taking for my not moving to Iowa to be with her in the year and a half prior and for my family not initiating the Nepali marriage talking process. She did stuff like that, not because she was a bad person, but because she was frustrated and hurt and I was indirectly and directly the source of that. In her view, I'd already hurt her, so it was ok to take wildly unfair shots at me.

In retrospect, my family looks kinda smart for not getting us hitched. We would have been disastrous five years down the line.

Hey thanks guys, this is all really good advice. Nicodimas, yeah it was my line in the sand, and in a rather sensitive area. Amphibs example was really helpful. It may in fact hve been due to bottled up frustration. And Mezla, yes it was the first time. I think, I will let it pass, and later, when we both aren't so tense, see if communication can deal with it. Looking back, I may not have been too coherent myself, having just returned while being very exhausted.

[Gnaw]

I was told by my sister that she "is the only person in the world who loves you and you're blowing it"

Apparently offering to sell her my Dad's van at half of blue book was an insult.

[amphibian]

melonhead, on 26 February 2015 - 11:42 PM, said:

Thanks for the support everyone. Sis starting chemo soon.

Build up a supply of board games, books to read together and other hang out activities. She's going to be sitting there and fighting her ass off with your help and presence.

Best of luck to her and the family/friends.

[Andorion]

OK, I don't know much about painmeds, or medical stuff in genral and I apologize if you have already heard what I am going to say before.

First, have you gone to other doctors? They may be able to at least understand why you are getting the pain. IN baffling cases like this second or third opinions may help.

Second, are there websites where you can discuss ailments with people who also have them? You could try looking, searching by symptoms. There maybe other people out there with the same problem. Maybe finding out what they are doing about it will help.

Third, how did you mother and aunts handle the pain? Did they take pain meds? If so, how did they handle the effects of long term medication?

Sorry if my entire reply is just a bunch of questions, but these are the reactions I had when I read your post. More information usually helps to make better choices.

[Mezla PigDog]

BK that sounds really tough. Is it called fibromyalgia? I'm going to waffle on for a minute but I'm sure you know your illness better than anyone on the internet so ignore if necessary but!!

I used to work in medical research in a group that looked into a rare lung disease. My boss was a professor who was the leading expert in the UK on this condition and he ran a treatment centre out of the hospital where we had our research labs. Patients came from all over the country. Some were referred by their own doctor who knew about the centre (they were usually relatively local) and some of them had found it on the internet and just emailed my boss out of the blue and said "these are my symptoms, can I come for treatment?" We used to run research update days where the patients would come in and see what we were up to and they all used to say how finding this doctor changed their lives. He couldn't cure them as the condition still has no cure but he knew about different drugs to try and just understood the symptoms. Some patients said that just learning the name of their condition made them able to cope better - I think the uncertainty over something debilitating must be terrifying and utterly depressing. It always made me think that if I ever found myself or a loved one with a weird illness and I couldn't get any traction with my local healthcare then I would go internet crazy until I found something to help even if it was just an internet support group of people suffering the same symptoms. There has to be someone in the US working on this and there must be clinical trials to get involved in.

My second point is that there was another research group in the hospital looking at people suffering from chronic pain. I had to sit through a lot of seminars on it and I remember my first impression was "Woah, people suffer from chronic debilitating pain with no identifiable reason and it's not because they are crazy and imagining it?" It's a really serious condition subject to a lot of research into how to manage symptoms. I remember they used to talk about how important it was to teach patients ways of coping with the pain (on top of their medication) and they ran loads of "Chronic Pain Management" clinics which seemed to be run of the mill so I'd find something like that if you haven't already!

Good luck either way. It sounds like you are doing really well just to get out of bed in the morning.

This post has been edited by Mezla PigDog: 27 February 2015 - 09:13 AM

[DeadHedge]

BK, Really sorry to hear tjhe difficulty that you are going through with the pain.

What you have described and what Mezlas has siad sound very much like fibromylagia, my mum was diagnosed with teh condition following a fall at work a number of years ago.

I personally haven't spoken with my mum for 3 years now, but i know when we last talked that she was in similar dibilitating pain and unfortunatelly the only medication that they could give her was morphine (which as far as i know she is sill on).

What my mum did find helpful though was attending a group recomended to her by her doctor where everyone was experiencing some form of chronic pain (diagnosed and un) and she found having people that know what she is going through and have experienced helped her stress levels, which in turn led her to embrace the pain and she found it doesnt affect her as bad. Or she is just learnign to cope better by talking to others to find out what they do.

I know this probably doesnt help but you know that everyone here is always ready to listen no matter whats going on.

DH

[TheRetiredBridgeburner]

Sorry to hear this Briar King.

I have Fibromyalgia, which is what a couple above have mentioned. I'm by no means an authority but if you want to chat, please feel free if it might help (although admittedly it's nothing like as severe as what you're describing).

If not, I admin with a support group called Chronic IllnessCat, and I can always pop you on there as an anonymous query to see if anyone has experienced anything similar and can make suggestions? Happy to do so if it would help at all.

This post has been edited by TheRetiredBridgeburner: 27 February 2015 - 11:23 AM

[Jakovasaurus]

A former co-worker of mine had something that sounds very familiar. He had pain in his extremities and he would get headaches so bad at work that he would suffer from vertigo. He to was on serious pain medication. He was diagnosed with "Peripheral Neuropathy". Sadly, he had to quit his job and focus on his health. It's disappointing doctors' first response to something like this is to just pile on more and more pain medication. In addition to getting 2nd/3rd/4th opinions from doctors, have you considered investigating alternative therapies (eastern medicine v. western medicine)?

[Mezla PigDog]

It defo affects men - I checked online before I posted because I couldn't remember how to spell it and read this: My link

Quote

Who is affected?
Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

Get thee a more up to date diagnosis stat!


I often think that people with rare illnesses can be really unlucky if they don't happen to get a doctor who has properly read up on the subject. You sometimes have to be seriously pushy to get listened to and find the right treatment. Give em hell - the fact you worry people think it is in your head is one of the common issues. Go internet reading crazy (although I usually diagnose myself with something horrendous and terminal when I do that).

This post has been edited by Mezla PigDog: 27 February 2015 - 05:49 PM

[Illuyankas]

Leonard Nimoy has died.

[amphibian]

Mezla PigDog, on 27 February 2015 - 05:45 PM, said:

I often think that people with rare illnesses can be really unlucky if they don't happen to get a doctor who has properly read up on the subject. You sometimes have to be seriously pushy to get listened to and find the right treatment. Give em hell - the fact you worry people think it is in your head is one of the common issues. Go internet reading crazy (although I usually diagnose myself with something horrendous and terminal when I do that).

If you can, find a doctor who specializes in chronic pain disorders either by referral from your current doctor or a google search. You may have to travel to one of the big cities in Louisiana to get one, but it will be worth it. Be pushy if you have to in order to link up with a doctor who really knows their stuff.

It's akin to a car mechanic. Most car mechanics can work on Chevys, Fords, Toyotas and so on. But when someone brings in a Land Rover, a Tesla or a Ferrari, most mechanics aren't up on them and the car has to be taken to a specialist.

I am forever thankful my parents never settled on the first available doctors and training for my toddler deaf self. I'd not be speaking normally or possibly be cooped up in an asylum.

The knowledgeable doctor may not be able to find a method to fix you, but they almost certainly can help you better figure out what is wrong and how to cope better (which the support groups can also do to a lesser degree).

Best of luck with this. It's tough. I can tell that even from a distance across the Internetz and you've gotta live it every day. Don't give up.

[Nicodimas]

Briar King, on 27 February 2015 - 05:38 PM, said:

I've seen a total of about 4 Dr over it. Never even crossed my mind to seek support groups on this. The Drs said about the females back then in 2000-2001 thInk it is Fibromyalgia, but not me cause it was women's syndrome back then. I've since heard Neurpathay is what I have by the latest dr but all my test come back negative so it's puzzling for sure. My guard is always up during these cause I know they won't find anything and their probably think this is BS he just here for good meds, he's to young to have pain like this.... I've wished for TK so many times since I was 19 so that I could just grab a Drs arm and let them feel what I feel while looking in their doubting eyes. I'm just scared shitless what to do.

Hot yoga.. Don't knock it until you try it. Enjoy!

[Gnaw]

Briar King, on 27 February 2015 - 05:38 PM, said:

I've seen a total of about 4 Dr over it. Never even crossed my mind to seek support groups on this. The Drs said about the females back then in 2000-2001 thInk it is Fibromyalgia, but not me cause it was women's syndrome back then. I've since heard Neurpathay is what I have by the latest dr but all my test come back negative so it's puzzling for sure. My guard is always up during these cause I know they won't find anything and their probably think this is BS he just here for good meds, he's to young to have pain like this.... I've wished for TK so many times since I was 19 so that I could just grab a Drs arm and let them feel what I feel while looking in their doubting eyes. I'm just scared shitless what to do.

Could the pain be described as a very intense version of the tingling one gets when a foot is asleep and waking up?

I have an aunt with fibromyalgia. I'm male, but have peripheral neuropathy caused by 2nd and 3rd degree burns over 45%. I was in a burn unit for 105 days. The entire time I was on a morphine drip and it didn't touch the pain in my feet and hands. When they moved me to the inpatient physical rehab unit the doctor there said, "Oh, that's neurogenic pain and morphine doesn't help with that. We'll take care of it."

Neurogenic pain is best handled with anti-convulsives rather than pain meds. Gabapentin (Neurontin) worked well for a long time, but gave me seriously weird dreams. Now I'm using Neupro patches. They work better without as many side effects as the neurontin. The one biggie for me with the Neupro patches is some serious mood changes for the 3 or so weeks it took to build up in my system.

[Tiste Simeon]

BK I'm not a Dr by any stretch of the imagination but I have seen Scrubs enough times to say:

I hope they sort you out soon!