Tonight I saw a statement on the COPD Intl. forum that asked whatever happened to the Pioneers. The question was asked in such a way as to make fun of the treatment many of us on this forum have had. I genuinely feel sorry for those people who are not taking time to educate themselves on stem cell therapy. This forum has dozens of articles written by knowledgeable people. Stem cell therapy is not something you would get in Fantasyland. It is real. It is available now in some countries and the most important thing, it works. Someone on that forum said I wasn't doing as well as others. I am not sure where anyone would read such a thing and I apologize if any of my posts have not been clear. I am on top of the world because of the way I feel. I go up and down the stairs with no SOB, not one bit. I am on the go from early morning until late at night. I am back to doing things I used to do before COPD tightened its grip on me to the point I was going nowhere but downhill. I would have a good day here or there, but never everyday! I was always getting sick and I would stay sick 3 times longer than a normal person. I couldn't have fun any more. I was always worrying if I had enough O2. Now, I have to worry if I even remember to take the portable with me. I still use it when I exert myself and I have caught myself more than once being half way down the block in my car and realizing I left the thing at home. There is no way that could have happened before my stem cell treatment. Not everyone will progress at the same pace. My doctor said he has never seen anyone who received stem cell therapy not see some improvement. I am honored to be one of the only people in the world to have had umbilical cord stem cell therapy and I will keep saying that until hopefully I am not one of a few people in the world who has had umbilical cord stem cell therapy. This is not an overnight cure, but it sure is a close second in my opinion.
Guests from other forums
- Thread starter barbara
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Barbara -- It appears that there is a special breed of person who is cynical about everyone and everything with the singular exception of...themselves. These people deal in what is commonly known as addition by subtraction, their ultimate goal being to make themselves look better by making others appear poorer. -- Vic
That other forum
Hi Barbara,
You must accept the fact that some people LOVE their illnesses. For many reasons: It makes them feel special. It appeals to their sense martyrdom. It gives them something to talk about. It gives them a reason to see the doctor. It gives them a reason to feel sorry for themselves. It provides an excuse for all types of behaviorial problems. I could go on...but I think you get my drift. They are to be pitied...but certainly not dignified by your notice.
They're are none so blind as those who WILL not see and sadly there is no cure (not even our good friend "Cordy") for ignorance.
Hi Barbara,
You must accept the fact that some people LOVE their illnesses. For many reasons: It makes them feel special. It appeals to their sense martyrdom. It gives them something to talk about. It gives them a reason to see the doctor. It gives them a reason to feel sorry for themselves. It provides an excuse for all types of behaviorial problems. I could go on...but I think you get my drift. They are to be pitied...but certainly not dignified by your notice.
They're are none so blind as those who WILL not see and sadly there is no cure (not even our good friend "Cordy") for ignorance.
Nice people, too
I should have also added that there are some very nice people on other forums, including COPD Intl. who don't have their head in the sand. After a long day, however, when an ugly comments rears its head, it is sometimes not easy to just ignore it. The encouraging thing is that that type of comment is getting to be the exception when it used to be the rule. Progress is being made. I can even laugh today because my "Latino" treatment cells came from Canada!
I should have also added that there are some very nice people on other forums, including COPD Intl. who don't have their head in the sand. After a long day, however, when an ugly comments rears its head, it is sometimes not easy to just ignore it. The encouraging thing is that that type of comment is getting to be the exception when it used to be the rule. Progress is being made. I can even laugh today because my "Latino" treatment cells came from Canada!
Sad people
Barbara,
I totally second what Anastasia said about others relishing in their diseases. I have a sister-in-law like that.....everything is about her and her problems, illnesses, etc. yet she never hears anything that anyone else has said about even serious illnesses. As an example, when she was talking to Doug (her brother) last weekend, he told her he was going back into rehab and how poorly he was feeling, yet she went on talking about her problems. To prove she didn't hear a thing he said, she called every day this past week and left messages to the effect that we're always gone, where were we, why didn't we call them back, she wanted to come down on the weekend to see us....and on and on. If she had heard one thing Doug said, she would have known where we were and why he wasn't home. Some people are just so caught up in themselves that they don't take the time to listen to anything others have to say, whether good or bad. Take them with a grain of salt and continue your good works. You are DEFINITELY making a difference in this world, even if it's to a select few....but you should take pride in the fact that if you make a difference to just one person, you've won. And, I can say you've made a HUGE difference in my life.
Hugs,
Mary
Barbara,
I totally second what Anastasia said about others relishing in their diseases. I have a sister-in-law like that.....everything is about her and her problems, illnesses, etc. yet she never hears anything that anyone else has said about even serious illnesses. As an example, when she was talking to Doug (her brother) last weekend, he told her he was going back into rehab and how poorly he was feeling, yet she went on talking about her problems. To prove she didn't hear a thing he said, she called every day this past week and left messages to the effect that we're always gone, where were we, why didn't we call them back, she wanted to come down on the weekend to see us....and on and on. If she had heard one thing Doug said, she would have known where we were and why he wasn't home. Some people are just so caught up in themselves that they don't take the time to listen to anything others have to say, whether good or bad. Take them with a grain of salt and continue your good works. You are DEFINITELY making a difference in this world, even if it's to a select few....but you should take pride in the fact that if you make a difference to just one person, you've won. And, I can say you've made a HUGE difference in my life.
Hugs,
Mary
Another weekend bashing
Well, another weekend of Pioneer bashing on another COPD site. It is becoming obvious to me that many of this particular group do not want to acknowledge that we as Pioneers are the guinea pigs for treatment that may well save their lives in the future. Several of them have no appreciation of that fact. I have continually asked them to read the articles we have posted on this forum and yet they seem to prefer to come up with their own strange theories about why we are feeling better after stem cell therapy. Anastasia shares my feeling exactly about the big pharmaceutical companies. I also posted a Time article tonight that said the best thing the U.S. government can do is to step aside and let stem cell research go on in the private sector. This particular COPD group has a mindset that Mexico is the only place to get stem cell therapy and that we had it done in a back alley somewhere. There is a clinic in Germany that now looks very promising and Scotland is likely to be in the picture soon also.Argentina and Costa Rica have reputable clinics, so Mexico is not the only option. Most of the "facts" about us are misstated on their forum so it is no wonder that they have not been able to figure out anything about how stem cells work. I truly wish that the conventional methods of exercise, good diet, proper meds and pulmo visits would have worked for me, but I was doing all that and continually getting worse with frequent illnesses that zapped me of my strength. You might find one or two people who feel like they have licked COPD through exercise, but these people are few and far between. If exercise and diet were the total answer wouldn't everyone be doing that instead of moaning and groaning about SOB and exasperations on COPD forums? COPD forums could become extinct! I just needed to vent a little after these naysayers tried to shred Jeannine and I this weekend. I truly feel sorry for them that they have no vision of how biotechnology is the medicine of the future. They just keep beating the same old drum and that doesn't work for me and obviously not for many of you. The Pioneer Trail is not for the meek, it is for those that aren't afraid to move forward through new technology that will better our lives. We will keep spreading the word.
Well, another weekend of Pioneer bashing on another COPD site. It is becoming obvious to me that many of this particular group do not want to acknowledge that we as Pioneers are the guinea pigs for treatment that may well save their lives in the future. Several of them have no appreciation of that fact. I have continually asked them to read the articles we have posted on this forum and yet they seem to prefer to come up with their own strange theories about why we are feeling better after stem cell therapy. Anastasia shares my feeling exactly about the big pharmaceutical companies. I also posted a Time article tonight that said the best thing the U.S. government can do is to step aside and let stem cell research go on in the private sector. This particular COPD group has a mindset that Mexico is the only place to get stem cell therapy and that we had it done in a back alley somewhere. There is a clinic in Germany that now looks very promising and Scotland is likely to be in the picture soon also.Argentina and Costa Rica have reputable clinics, so Mexico is not the only option. Most of the "facts" about us are misstated on their forum so it is no wonder that they have not been able to figure out anything about how stem cells work. I truly wish that the conventional methods of exercise, good diet, proper meds and pulmo visits would have worked for me, but I was doing all that and continually getting worse with frequent illnesses that zapped me of my strength. You might find one or two people who feel like they have licked COPD through exercise, but these people are few and far between. If exercise and diet were the total answer wouldn't everyone be doing that instead of moaning and groaning about SOB and exasperations on COPD forums? COPD forums could become extinct! I just needed to vent a little after these naysayers tried to shred Jeannine and I this weekend. I truly feel sorry for them that they have no vision of how biotechnology is the medicine of the future. They just keep beating the same old drum and that doesn't work for me and obviously not for many of you. The Pioneer Trail is not for the meek, it is for those that aren't afraid to move forward through new technology that will better our lives. We will keep spreading the word.
Ignorant People
O k Barbara---
Shake it off--consider the source, and forget them--after all, you've got all of us--you have helped all of us----There are 3 of us that will be going in Oct.~~~ why??--because of you and Jeannine, and the rest of the brave Pioneers---You know what---I wish there had been more time, b'tween the first UC stem cell for copd and now, but, there isn't, and I chose not to wait any longer, why?? because I believe it is the way to go, and that is because of you---If I wait a year or two, to see how you do, I will be way worse off by then, and I don't want to wait, I want it now--my thinking is, The sooner, the Better---
As for the naysyers etc.--they are really only hurting themselves, they have their heads stuck in the sand, and they will choke to death on that sand--Won't be your fault, it will be theirs--and theirs alone---
I am very glad you came into my life, because it may very well have saved my life--and for that I thank you---
Rose
O k Barbara---
Shake it off--consider the source, and forget them--after all, you've got all of us--you have helped all of us----There are 3 of us that will be going in Oct.~~~ why??--because of you and Jeannine, and the rest of the brave Pioneers---You know what---I wish there had been more time, b'tween the first UC stem cell for copd and now, but, there isn't, and I chose not to wait any longer, why?? because I believe it is the way to go, and that is because of you---If I wait a year or two, to see how you do, I will be way worse off by then, and I don't want to wait, I want it now--my thinking is, The sooner, the Better---
As for the naysyers etc.--they are really only hurting themselves, they have their heads stuck in the sand, and they will choke to death on that sand--Won't be your fault, it will be theirs--and theirs alone---
I am very glad you came into my life, because it may very well have saved my life--and for that I thank you---
Rose
I have always liked Roses
What a nice post Rose. You people do keep us going that's for sure. Other than vacuuming I can think of nothing worse than visiting these negative forums, but there are times that for the sake of the members on them that live in the real world, we feel we need to respond. Actually, even vacuuming is more enjoyable. Just once in a while I need to blow off steam and thank heavens I can do it with intelligent, far sighted members like this forum attracts. I am feeling even better today than I have been. I think this no O2 thing is going to work out just fine. I have been real nervous and can hardly believe that maybe there is a chance to get off of it completely. I can now feel if I have overdone it and can almost guess exactly what my sats will be when I check. If I just take a few moments to recuperate I can generally not have to recharge with any O2. My problem is that I am like a whirlwind. The supplements plus just the way I am makes me want to constantly be doing something at a fast pace. The energy level I have is off the charts. I have promised myself to try to be a little kinder and give those cells the chance they need to continue their amazing work. Basically, what this means is that I am taking a few things a little slower so that I can do them without O2, but if I am in a huge hurry, I do use the O2 so I don't desaturate due to my fast pace of doing things. I hope this makes some sense to all of you. Anyway, thanks for the encouragement and get ready to roll. Your appointment will be here sooner than you think. How many days will it take you to drive to San Diego? We have several other forum members going in September so this is going to be a good fall for sure.
What a nice post Rose. You people do keep us going that's for sure. Other than vacuuming I can think of nothing worse than visiting these negative forums, but there are times that for the sake of the members on them that live in the real world, we feel we need to respond. Actually, even vacuuming is more enjoyable. Just once in a while I need to blow off steam and thank heavens I can do it with intelligent, far sighted members like this forum attracts. I am feeling even better today than I have been. I think this no O2 thing is going to work out just fine. I have been real nervous and can hardly believe that maybe there is a chance to get off of it completely. I can now feel if I have overdone it and can almost guess exactly what my sats will be when I check. If I just take a few moments to recuperate I can generally not have to recharge with any O2. My problem is that I am like a whirlwind. The supplements plus just the way I am makes me want to constantly be doing something at a fast pace. The energy level I have is off the charts. I have promised myself to try to be a little kinder and give those cells the chance they need to continue their amazing work. Basically, what this means is that I am taking a few things a little slower so that I can do them without O2, but if I am in a huge hurry, I do use the O2 so I don't desaturate due to my fast pace of doing things. I hope this makes some sense to all of you. Anyway, thanks for the encouragement and get ready to roll. Your appointment will be here sooner than you think. How many days will it take you to drive to San Diego? We have several other forum members going in September so this is going to be a good fall for sure.
Good For You Rose!
I am always so delighted to learn of more people going for treatment. Nelson is sooooo much better and it hasn't been 3 months yet! He is 70-yrs-old and was is very bad shape (FEV1 @11%) so he is still on oxygen, but no SOB at all!!
I went to another COPD site last night and found it quite entertaining really.
Barbara and Jeanine both tried to have a discourse with the other people on the site...to no avail. But some of it was hilarious. My favorite was the lady who considered a stem cell cocktail "an invasive" procedure as she wouldn't want someone else's cell running through her body...I wonder if she eats meat and what she thinks those cells are doing in her tummy and then in her blood system? Then there is some dude who thinks he's working for the FDA
and wants all the testing etc. etc. etc. But the real issue seems to be money.
How sad that those people don't consider themselves worth 15 or 25 thousand dollars!
I am always so delighted to learn of more people going for treatment. Nelson is sooooo much better and it hasn't been 3 months yet! He is 70-yrs-old and was is very bad shape (FEV1 @11%) so he is still on oxygen, but no SOB at all!!
I went to another COPD site last night and found it quite entertaining really.
Barbara and Jeanine both tried to have a discourse with the other people on the site...to no avail. But some of it was hilarious. My favorite was the lady who considered a stem cell cocktail "an invasive" procedure as she wouldn't want someone else's cell running through her body...I wonder if she eats meat and what she thinks those cells are doing in her tummy and then in her blood system? Then there is some dude who thinks he's working for the FDA
and wants all the testing etc. etc. etc. But the real issue seems to be money.
How sad that those people don't consider themselves worth 15 or 25 thousand dollars!
Roses
BARBARA---
I WENT IN THERE AND READ ALL THE NEGATIVITY,
BLOWS MY MIND-- BUT, THE WORD IS GETTING OUT----
I'M NOT SURE HOW LONG IT WILL TAKE US TO GET THERE---HUBBY WANTS TO LEAVE A BIT EARLY AND TAKE HIS TIME, HE GETS TIRED DRIVING, AND HATES THE TRAFFIC IN CA.
WE HAVE A FRIEND IN GRANTS PASS, SO WE MAY GO VISIT HER, ON THE WAY--
I HAVEN'T EVEN LOOKED AT THE TRIP DOWN YET, WILL HAVE TO GET ON LINE, AND BOOK SOME ROOMS ETC.
I HAVE A NEPHEW AND GREAT NIECE IN SAN DIEGO, SO HOPING I MIGHT GET TO SEE THEM WHILE I'M THERE--- TRYING TO DECIDE IF I SHOULD BUY A SWIMSUIT---OR NOT---HAVEN'T HAD ONE IN YEARS---HATE TO BUY A BIG ONE,THEN LOSE WEIGHT--LOL
ROSE
BARBARA---
I WENT IN THERE AND READ ALL THE NEGATIVITY,
BLOWS MY MIND-- BUT, THE WORD IS GETTING OUT----I'M NOT SURE HOW LONG IT WILL TAKE US TO GET THERE---HUBBY WANTS TO LEAVE A BIT EARLY AND TAKE HIS TIME, HE GETS TIRED DRIVING, AND HATES THE TRAFFIC IN CA.
WE HAVE A FRIEND IN GRANTS PASS, SO WE MAY GO VISIT HER, ON THE WAY--
I HAVEN'T EVEN LOOKED AT THE TRIP DOWN YET, WILL HAVE TO GET ON LINE, AND BOOK SOME ROOMS ETC.
I HAVE A NEPHEW AND GREAT NIECE IN SAN DIEGO, SO HOPING I MIGHT GET TO SEE THEM WHILE I'M THERE--- TRYING TO DECIDE IF I SHOULD BUY A SWIMSUIT---OR NOT---HAVEN'T HAD ONE IN YEARS---HATE TO BUY A BIG ONE,
THEN LOSE WEIGHT--LOLROSE
Better than than the comedy channel
Hi Anastasia, The other forum is rather entertaining isn't it when you think about it. Excellent thought about the food we eat and what is in it. You are right about meat and how those cells are running through your body if you eat meat or use dairy products. Maybe, that lady thinks cows grow on trees and milk comes from underground milk aquifers. I would believe anything from that group after being mauled for a couple of days. Thank heavens there are some good people on there too. Sadly, for them if they are waiting for treatment here in the U.S. under strict FDA guidelines it will probably not happen in their lifetimes. The Time article I posted yesterday says the government should step aside on this issue and I agree with that. Scientists say they need breathing room to develop the therapies and with the government in charge of this, it just isn't going to happen in the near future. Thanks for the update on Nelson. Is he too busy training for the Olympics to post an update in the section for that? I think it is pretty terrific to hear how well he is doing. Also, anyone reading this, Anastasia started a caregivers category and we would still like to see more action there. This is a great category because caregivers need TLC too and sometimes it can be overwhelming dealing with someone who is ill all the time. It can also be very joyful to watch that person get well again, so please share in this category if you are a caregiver.
Hi Anastasia, The other forum is rather entertaining isn't it when you think about it. Excellent thought about the food we eat and what is in it. You are right about meat and how those cells are running through your body if you eat meat or use dairy products. Maybe, that lady thinks cows grow on trees and milk comes from underground milk aquifers. I would believe anything from that group after being mauled for a couple of days. Thank heavens there are some good people on there too. Sadly, for them if they are waiting for treatment here in the U.S. under strict FDA guidelines it will probably not happen in their lifetimes. The Time article I posted yesterday says the government should step aside on this issue and I agree with that. Scientists say they need breathing room to develop the therapies and with the government in charge of this, it just isn't going to happen in the near future. Thanks for the update on Nelson. Is he too busy training for the Olympics to post an update in the section for that? I think it is pretty terrific to hear how well he is doing. Also, anyone reading this, Anastasia started a caregivers category and we would still like to see more action there. This is a great category because caregivers need TLC too and sometimes it can be overwhelming dealing with someone who is ill all the time. It can also be very joyful to watch that person get well again, so please share in this category if you are a caregiver.
Rose,
Where are you driving from to get to San Diego? There are some absoutly beautiful views to be had. I loved the west side of the Rockies but the altitude was no fun at all. I didn't know how high Arizona was either until I felt kind of dizzy and then looked at the map. As far as the bathing suit goes, go and get one that fits. When you do lose weight have the suit hung on the back of your closet door so you can feel smug about your accomplishment.
John
Where are you driving from to get to San Diego? There are some absoutly beautiful views to be had. I loved the west side of the Rockies but the altitude was no fun at all. I didn't know how high Arizona was either until I felt kind of dizzy and then looked at the map. As far as the bathing suit goes, go and get one that fits. When you do lose weight have the suit hung on the back of your closet door so you can feel smug about your accomplishment.
John
travel plans
John--we Will Be Traveling I-84 Down To Portland Or. The I-5 Down To San Diego---made That Trip Years Ago---i'm Sure The Traffic Is Worse---
If I Can Find A Suit At This Late Daye, I Will Buy One, Then Do As You Say, Hang It On The Closet To Look At---i Live In A Very Small Town, So Not Sure I Can Even Find One---
Thanks--rose
John--we Will Be Traveling I-84 Down To Portland Or. The I-5 Down To San Diego---made That Trip Years Ago---i'm Sure The Traffic Is Worse---
If I Can Find A Suit At This Late Daye, I Will Buy One, Then Do As You Say, Hang It On The Closet To Look At---i Live In A Very Small Town, So Not Sure I Can Even Find One---
Thanks--rose
I have purchased some great coats in San Diego
It can get cold in San Diego, so you might want to get a bathing suit with long sleeves! I always am optimistic when I go to California and twice now I have had to go buy a coat when I went there. Oh well, they were nice coats and I can only use one in Denver. It can also be very hot. Maybe, you'd better check out the forecast before you go.
It can get cold in San Diego, so you might want to get a bathing suit with long sleeves! I always am optimistic when I go to California and twice now I have had to go buy a coat when I went there. Oh well, they were nice coats and I can only use one in Denver. It can also be very hot. Maybe, you'd better check out the forecast before you go.