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Sorry, not funny

Posted by Shelley on 2/07/02 at 15:59 (072936)

I could have let this pass, and maybe should have, but after several days decided to respond. When you have watched someone you love deteriorate right before your eyes over a period of 2-1/2 years, with ever-increasing pain and limitations, and then find that at least a part if not all of his condition is due to a vitamin deficiency (in this case B1 'beriberi') and that deficiency is fatal if left untreated, (pardon the run on sentence)and having just been discovered was on the verge of being a dangerous situation, it's not funny to read the comment 'I thought beriberi was a new sport drink.' The me that's no different than making light of someone's cancer diagnosis.

Re: Sorry, not funny

wendyn on 2/07/02 at 16:26 (072940)

Shelley - I think many people underestimate the seriousness of a condition if it's labelled as a vitamin deficiency. Somehow it sounds less dangerous - but it's not.

Re: Sorry, not funny

Shelley on 2/07/02 at 17:09 (072951)

Thank you, Wendy for your comments and sensitivity.

Re: I did not find it funny but

Tammie on 2/07/02 at 18:42 (072959)

Shelly , I understand what you are saying in some respect. It is very hard to watch any human being suffer or deteriorate right before your eyes but even more so when it is someone you love and know has been always strong and there for you. I understand this in more ways then one! I hope that it was the unusual name of the dx that was being made fun of and not the situation or you or your husband. For you to see this it must have hurt as you very much love him and are trying your hardest to understand and learn and teach others in hopes of helping another! Forgive our ignorance to the name as there are many different names that may make you wince or even smile or wonder in amazement ( what on earth is it)

I really hope that you feel better after getting it out , I am sorry you were hurt. I am interested in what you have shared as well we all here in one way or another are looking for any thing any string or thread to figure out why we ARE still here . Who knows you might be the next in line to find a answer to our pain and can feel very smug at whoever ! Please , many people that are very nice and caring also might not know how to respond to serious natured things even at the example you gave(the cancer dx) some make a joke at it so not to show there true emotions or there lack of understanding!Some could never admit they don't know everything ,or dont know how to react to something uncertain. I have found that to be true in many. Working with elderly and in a nursing home setting has shown me many many different sides of people. I do hope that your hubby is well and that this is his answer, and he is awful lucky to have a loving spouse like you to care for him ! He is lucky! Have a great day and keep the sun in your heart it is beautiful, dont let the dark storm in!

Re: Tammie, you're sweet

Shelley on 2/07/02 at 19:30 (072966)

Thank you for your comments. Hope you are well on your way to recovery as well.

Re: yes, but context matters

elliott on 2/08/02 at 07:05 (073003)

That context is lost when you start a new thread, making it look worse than it is, instead of replying in that thread where it belonged.

Note where my comment was made. It was in response to a doctor's comment, 'Wow this is something. How many cases like this exist in the USA.' Context. I never heard of the word 'beriberi' before this thread and the word (not the condition) sounds funny. That was the context of my comment. You may still think this was insensitive. Fine. Sorry. Some may think otherwise.

Re: Sorry, not funny

cindyp on 2/08/02 at 12:50 (073042)

You are right. Not funny not in the least. Other people wouldn't like it if light were made of their problems. Better care and understanding should be taken before jokes about another's health are made. Hope your husband if better. This is a dangerous problem if left untreated. Good that it was caught. Take care.

Re: Sorry, not funny

rebecca h on 2/08/02 at 18:39 (073087)

I am so, so sorry about all the pain your husband has gone through but also very encouraged that you have finally found the answer. I had heard of beriberi but now know alot more than I did. I'm eager to hear of progress that your husband makes and would love to hear updates on how the vitamins are helping.

In defense of a certain person who made the sports drink comment... I am sure he didn't mean to hurt you at all... Believe it or not... he is a very compassionate person who also has an interesting sense of humor which sometimes comes across the wrong way... I probably would have felt the same way you did if it was my husband who had been suffering so long and I had just found out what the cause was and was sharing it with fellow sufferers. But please don't be too hurt... This guy is kindof the 'resident bloodhound' around here who often goes to great lengths to help research the problems people face here and find Hard-to-find answers. Also, his humor is often a bright spot in the day to people like me who have a tendency to get very depressed with the chronic pain that I have been in since last July. Just try to ignore this one comment that hurt and look forward to having him as a friend and the rest of us here as well. We're a pretty cool bunch of people who are eager to help each other...and though we have our misunderstandings there are alot of very informative discussions... please stick around!

Re: Sorry, not funny

Suzanne D on 2/08/02 at 18:59 (073091)

Rebecca, you 'took the words out of my mouth' as they say. I have not had much time on the computer in the last few days - a little here and a little there, but I have had this thread on my mind and intended to say the very things you have just said.

Shelly, I too am so sorry for your husband's condition and the pain you both have experienced. And I hope now that the condition has been properly diagosed that he will respond quickly! I understand where you are coming from, but please take what Rebecca has said to heart: I truly don't believe any harm was meant, either. As she said, when you are on this site for awhile, you will see the great amount of time and effort Elliott puts into posts, helping many to find out detailed information in articles and on web sites, even helping advise on the exact shoe that might help a certain conditon.

Sometimes, too, a thread gets started, and then it begins to change in content from different comments that are made as people read and respond. I assure you that everyone here is supportive and shows this in different ways.

My best wishes go out to both you and your husband! :-)

Re: Rebecca You get the blue for knowing just how to say this with class! TY

Tammie on 2/08/02 at 19:45 (073099)

You stated this very well, I was unsure how to say that but you did it wonderful Thank You so very much Rebecca ! I posted to her without reading all , but when I realized what happened I tried to think of a nice way to put that across, thank you for doing it so well! HUGS to u!

Re: Shelley

Tammie on 2/08/02 at 20:01 (073101)

I just wanted to tell you that I do understand and I really am a mazed at how utterly sensitive that you are to your husbands feelings! You just put me in a awe state! Your family sure is lucky to have such a caring and loving woman in there midst! I wish you could give classes of that to spouses and family who can't or won't deal with the changes that sometimes happen! And I am going to ditto what Rebecca so kindly said about our poster, He really is a good , and helpful person! His ways are a bit different but he DOES have a bigger heart then he portrays sometimes!!!! He also has a very large brain(LOL) meaning he has much knowledge to , and he shares with all! I just kinda believe since I have been told I have no sense of humor that some of us are a bit more serious then others and maybe we are a bit more worried about sensitivity, then plainess in words! Anyways I am happy you joined us for the (other side) the spousal side I wish more spouses would do like you are! It might be quite helpful in there dealing with living with people who have a disability of sorts! Hope to see you continue posting and hope to also see your hubby as maybe we could offer support to him also!Keep the sunshine in your heart our friend!

Re: Thank you, Rebecca

Shelley G on 2/08/02 at 20:48 (073104)

I appreciate your kind comments.

Re: Thanks, again Tammy

Shelley G on 2/09/02 at 10:16 (073130)

Tammy, thank you for your kind words. I certainly didn't mean to start a whole big thing here. As the other person in the partnership watching and not being able to 'make it better' and seeing what the condition has done to my husband and to our lifestyle, I think you're probably right when you say that I am sensitive. It's just so frustrating and unrelenting, as you well know. Believe me, I am very impressed with Elliot's expanse of knowledge. It is very helpful to have someone who does a lot of the 'hunting down' of knowledge for others. I spend a lot of time looking for answers and have appreciated the insights and helpful hints of Elliot and others who post to this board. Maybe my place here, in addition to learning from those of you who suffer from foot/ankle pain, is to be the voice of the spouse, as you suggested.

My husband has always been a very active person...not the football, baseball type, but has a Boy Scout Troop, is chief of a volunteer fire department, a member of the local police reserve unit, a part-time instructor in rope rescue, trench rescue, fire fighter practices, etc., for one of our state's universities. In his spare time, he works at his job!! Ever so slowly, just like the insidious progression of neuropathy, he has had to minimize his participation in these activities. That's really sad because, although he doesn't complain at all about what he does for a living, what really keeps him going is his emergency/rescue stuff. He is still participating in most of it. This past year he didn't teach any college classes...just too physically demanding. This also is sad to me because he is such a fine teacher. It's not always easy to get a full grown man to back off of a cliff or out of a window for the first time, feeling as though the only thing between himself and disaster is what appears at the time to be a very small rope! But he does it...every time. Will climb out there with them and go all the way down the cliff or wall right beside them.

I started what some might call a crazy way of recordkeeping of my husband's feet. Along with the informational stuff I keep on the computer such as doctor's visits, lab results, medications, etc., I found of pair of life-size plaster feet (they are really meant to be garden stones)at our local Hobby Lobby. I mark on the underside of them with a magic marker where the numbness is and the date. It's sort of like a weird growth chart you keep on your kids! Anyway, it's easy to keep track of what's going on...for better or for worse.

Best of luck to you in your search for a cure or at the very least relief from the pain.

Shelley

Re: Sorry, not funny

wendyn on 2/07/02 at 16:26 (072940)

Shelley - I think many people underestimate the seriousness of a condition if it's labelled as a vitamin deficiency. Somehow it sounds less dangerous - but it's not.

Re: Sorry, not funny

Shelley on 2/07/02 at 17:09 (072951)

Thank you, Wendy for your comments and sensitivity.

Re: I did not find it funny but

Tammie on 2/07/02 at 18:42 (072959)

Shelly , I understand what you are saying in some respect. It is very hard to watch any human being suffer or deteriorate right before your eyes but even more so when it is someone you love and know has been always strong and there for you. I understand this in more ways then one! I hope that it was the unusual name of the dx that was being made fun of and not the situation or you or your husband. For you to see this it must have hurt as you very much love him and are trying your hardest to understand and learn and teach others in hopes of helping another! Forgive our ignorance to the name as there are many different names that may make you wince or even smile or wonder in amazement ( what on earth is it)

I really hope that you feel better after getting it out , I am sorry you were hurt. I am interested in what you have shared as well we all here in one way or another are looking for any thing any string or thread to figure out why we ARE still here . Who knows you might be the next in line to find a answer to our pain and can feel very smug at whoever ! Please , many people that are very nice and caring also might not know how to respond to serious natured things even at the example you gave(the cancer dx) some make a joke at it so not to show there true emotions or there lack of understanding!Some could never admit they don't know everything ,or dont know how to react to something uncertain. I have found that to be true in many. Working with elderly and in a nursing home setting has shown me many many different sides of people. I do hope that your hubby is well and that this is his answer, and he is awful lucky to have a loving spouse like you to care for him ! He is lucky! Have a great day and keep the sun in your heart it is beautiful, dont let the dark storm in!

Re: Tammie, you're sweet

Shelley on 2/07/02 at 19:30 (072966)

Thank you for your comments. Hope you are well on your way to recovery as well.

Re: yes, but context matters

elliott on 2/08/02 at 07:05 (073003)

That context is lost when you start a new thread, making it look worse than it is, instead of replying in that thread where it belonged.

Note where my comment was made. It was in response to a doctor's comment, 'Wow this is something. How many cases like this exist in the USA.' Context. I never heard of the word 'beriberi' before this thread and the word (not the condition) sounds funny. That was the context of my comment. You may still think this was insensitive. Fine. Sorry. Some may think otherwise.

Re: Sorry, not funny

cindyp on 2/08/02 at 12:50 (073042)

You are right. Not funny not in the least. Other people wouldn't like it if light were made of their problems. Better care and understanding should be taken before jokes about another's health are made. Hope your husband if better. This is a dangerous problem if left untreated. Good that it was caught. Take care.

Re: Sorry, not funny

rebecca h on 2/08/02 at 18:39 (073087)

I am so, so sorry about all the pain your husband has gone through but also very encouraged that you have finally found the answer. I had heard of beriberi but now know alot more than I did. I'm eager to hear of progress that your husband makes and would love to hear updates on how the vitamins are helping.

In defense of a certain person who made the sports drink comment... I am sure he didn't mean to hurt you at all... Believe it or not... he is a very compassionate person who also has an interesting sense of humor which sometimes comes across the wrong way... I probably would have felt the same way you did if it was my husband who had been suffering so long and I had just found out what the cause was and was sharing it with fellow sufferers. But please don't be too hurt... This guy is kindof the 'resident bloodhound' around here who often goes to great lengths to help research the problems people face here and find Hard-to-find answers. Also, his humor is often a bright spot in the day to people like me who have a tendency to get very depressed with the chronic pain that I have been in since last July. Just try to ignore this one comment that hurt and look forward to having him as a friend and the rest of us here as well. We're a pretty cool bunch of people who are eager to help each other...and though we have our misunderstandings there are alot of very informative discussions... please stick around!

Re: Sorry, not funny

Suzanne D on 2/08/02 at 18:59 (073091)

Rebecca, you 'took the words out of my mouth' as they say. I have not had much time on the computer in the last few days - a little here and a little there, but I have had this thread on my mind and intended to say the very things you have just said.

Shelly, I too am so sorry for your husband's condition and the pain you both have experienced. And I hope now that the condition has been properly diagosed that he will respond quickly! I understand where you are coming from, but please take what Rebecca has said to heart: I truly don't believe any harm was meant, either. As she said, when you are on this site for awhile, you will see the great amount of time and effort Elliott puts into posts, helping many to find out detailed information in articles and on web sites, even helping advise on the exact shoe that might help a certain conditon.

Sometimes, too, a thread gets started, and then it begins to change in content from different comments that are made as people read and respond. I assure you that everyone here is supportive and shows this in different ways.

My best wishes go out to both you and your husband! :-)

Re: Rebecca You get the blue for knowing just how to say this with class! TY

Tammie on 2/08/02 at 19:45 (073099)

You stated this very well, I was unsure how to say that but you did it wonderful Thank You so very much Rebecca ! I posted to her without reading all , but when I realized what happened I tried to think of a nice way to put that across, thank you for doing it so well! HUGS to u!

Re: Shelley

Tammie on 2/08/02 at 20:01 (073101)

I just wanted to tell you that I do understand and I really am a mazed at how utterly sensitive that you are to your husbands feelings! You just put me in a awe state! Your family sure is lucky to have such a caring and loving woman in there midst! I wish you could give classes of that to spouses and family who can't or won't deal with the changes that sometimes happen! And I am going to ditto what Rebecca so kindly said about our poster, He really is a good , and helpful person! His ways are a bit different but he DOES have a bigger heart then he portrays sometimes!!!! He also has a very large brain(LOL) meaning he has much knowledge to , and he shares with all! I just kinda believe since I have been told I have no sense of humor that some of us are a bit more serious then others and maybe we are a bit more worried about sensitivity, then plainess in words! Anyways I am happy you joined us for the (other side) the spousal side I wish more spouses would do like you are! It might be quite helpful in there dealing with living with people who have a disability of sorts! Hope to see you continue posting and hope to also see your hubby as maybe we could offer support to him also!Keep the sunshine in your heart our friend!

Re: Thank you, Rebecca

Shelley G on 2/08/02 at 20:48 (073104)

I appreciate your kind comments.

Re: Thanks, again Tammy

Shelley G on 2/09/02 at 10:16 (073130)

Tammy, thank you for your kind words. I certainly didn't mean to start a whole big thing here. As the other person in the partnership watching and not being able to 'make it better' and seeing what the condition has done to my husband and to our lifestyle, I think you're probably right when you say that I am sensitive. It's just so frustrating and unrelenting, as you well know. Believe me, I am very impressed with Elliot's expanse of knowledge. It is very helpful to have someone who does a lot of the 'hunting down' of knowledge for others. I spend a lot of time looking for answers and have appreciated the insights and helpful hints of Elliot and others who post to this board. Maybe my place here, in addition to learning from those of you who suffer from foot/ankle pain, is to be the voice of the spouse, as you suggested.

My husband has always been a very active person...not the football, baseball type, but has a Boy Scout Troop, is chief of a volunteer fire department, a member of the local police reserve unit, a part-time instructor in rope rescue, trench rescue, fire fighter practices, etc., for one of our state's universities. In his spare time, he works at his job!! Ever so slowly, just like the insidious progression of neuropathy, he has had to minimize his participation in these activities. That's really sad because, although he doesn't complain at all about what he does for a living, what really keeps him going is his emergency/rescue stuff. He is still participating in most of it. This past year he didn't teach any college classes...just too physically demanding. This also is sad to me because he is such a fine teacher. It's not always easy to get a full grown man to back off of a cliff or out of a window for the first time, feeling as though the only thing between himself and disaster is what appears at the time to be a very small rope! But he does it...every time. Will climb out there with them and go all the way down the cliff or wall right beside them.

I started what some might call a crazy way of recordkeeping of my husband's feet. Along with the informational stuff I keep on the computer such as doctor's visits, lab results, medications, etc., I found of pair of life-size plaster feet (they are really meant to be garden stones)at our local Hobby Lobby. I mark on the underside of them with a magic marker where the numbness is and the date. It's sort of like a weird growth chart you keep on your kids! Anyway, it's easy to keep track of what's going on...for better or for worse.

Best of luck to you in your search for a cure or at the very least relief from the pain.

Shelley