[TMIC] OT: Memorial Day
On Friday night I went down to the U. S. Capitol with some friends and we sat on the lawn and got to watch the rehearsal for the Symphony that would take place the next night in honor of Memorial Day.! It was very moving.. The Rolling Thunder motorcycles were all over the city and it was awesome. My dad served in the Navy and my husband in the United States Marine Corps. So at I just want to salute all of those here on the list who served their country in some capacity! Semper Fi Trudy URRAH - that's for Gunny!
RE: [TMIC] Getting Humble...
Dear Trudy, You have addressed and brought up my favorite topic! My greatest frustrations and anxieties have been caused by my condition! I have always felt that no one understands what i am going thru. This includes my wife,children,friends and most of my Doctors. In some cases this is because I try not to share with people and in other cases they do not understand. Unless someone has walked in our shoes they cannot understand what is in our heads. I may tell my wife my legs are hurting mewhat I really mean to say is that my legs are hurting more than what is normal for memy legs hurt 24/7and yet after 10 years she cannot or does not see the difference in what I am saying...I hope I am not looking for sympathy( although that might not hurt every now and then) simply understanding from someone who lives with me and sees me everyday. She doesnt really understand and hopefully never will. I am still terrified of crowds...I am able to walk but a small push or shove can knock me off my feet..vanity keeps me from using a cane...I guess I feel it is bad to be different and a cane makes me different and less than normal...this feeling may be rationally stupid...but I cannot help how I feel and nothing anyone in the group says is going to make me feel differently. Our condition makes our lives far more difficult and not being able to talk about it makes it even harder. I appreciate the group and I know I can talk here...even though our lives and how TM has treated us all very differently makes each of our cases unique. Knowing that even if I try (which I have) to explain how I really feel to my loved ones,friends and co-workers, they will never understand truly frustrates me! But in my experience (10 years) there is nothing we can do about it. Hard as it seems we must accept this reality and accept we can do nothing about it. If anyone thinks I am wrong and or has a better way , than I am all earsbut please do not tell me to have A POSITIVE ATTITUDE towards my condition.I am the one in this group who has always preached staying positive and not giving in to the condition.and I have not! But that does not lessen the frustrations! I am 59 and have had this condition since one week after my 50th birthdayand I still work full time.but not one day goes by where I don't long for the old me.and the older I get I accept that the cure (which is coming) is going to be to late for me.So I just do the best I can everyday.but that does not make the sadness and frustrations go away...they simply become part of your life. Rob in New Jersey From: Trudy [mailto:[EMAIL PROTECTED] Sent: Sunday, May 27, 2007 5:09 PM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: RE: [TMIC] Getting Humble... I would strongly encourage anyone on this list to share with us whatever is going on in their life. I and many others have vented to this group. Whether it be about pain, husbands, wives, the children, the way others treat us in the stores and restaurants and just life in general. Bernard Pelow certainly shared his frustrations and pain as he watched his daughter go thru a horrendous time in her life. I think he might have been overwhelmed by e-mails... but we care... some know a great deal more (Our dear doctor F) and some are the caretakers who also need to have a place to vent or share or question...it's a bit of a risk to put yourself out there... and sometimes you're going to be misunderstood... but who else can really understand how you feel... I am truly sorry to hear that this person is in constant, intense pain... He/She is in my prayers as are all of those on our TM list! Trudy From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, May 26, 2007 4:37 AM To: tmic-list@eskimo.com Subject: [TMIC] Getting Humble... This is a subject that I have not seen debated in the five years I have been a member of this exclusive club of amazing, diverse people brought together by a common problem...TM. I recently received an email from someone who has been on the list quite a while. This person has troubles just like the rest of us and we help one another when we can, but I only tonight found out that they are in extreme pain and at times can only sit for a few seconds at a time. Yet, they take any amount of time they can handle to use their knowledge to educate us and promote dialogue between us, in spite of being racked by pain. This person is one of the walking wounded and was, I thought, in pretty good condition. Tonight, I learned that conception has not been true...and I find myself amazed to find the depth of their disability. Now, I am wondering how important it is for us to put on a happy face and keep our infirmities to ourselves rather than getting honest and sharing our limitations with the possibility of connecting with someone else, especially new members
Re: [TMIC] Getting Humble...
Robert, I'm not going to tell you that you should use a cane, or do anything else you're not comfortable doing for that matter. Just want to relate my own experiences. I went years without using a cane, with the feeling that I didn't want to be looked at as 'different'. But then I started losing my footing more and falling. So I sucked it up and got a cane. It helped me be more mobile, my goal, and I didn't notice anyone staring, or didn't care if they stared. The next step was parking. I refused to get a parking placard. Uh-uh, not me! So I would park far away, and sometimes lose steam and barely get back to my car. One day, one of my doctors told me I HAVE to get a parking placard. He said it in a supportive, it's ok to get one, you need it, manner. I got one and i was able to now shop in stores that I was just driving by before. Last week I broke through another layer of feeling different-ness and got the Hugo Rolling Walker. I haven't had a chance to use it outdoors yet, but I am looking forward to finding out what it will allow me to do. And if I get tired it has a seat! No fear of my legs locking up! It will afford me a little exercise which I am woefully lacking. I hope you can go forever without having to use any of these tools, but that's all they are is tools. You stated your concern about being bumped into in a crowd..I know that feeling well. My 2c. Best regards, Kevin Robert Pall wrote: Dear Trudy, You have addressed and brought up my favorite topic! My greatest frustrations and anxieties have been caused by my condition! I have always felt that no one understands what i am going thru. This includes my wife,children,friends and most of my Doctors. In some cases this is because I try not to share with people and in other cases they do not understand. Unless someone has walked in our shoes they cannot understand what is in our heads. I may tell my wife my legs are hurting mewhat I really mean to say is that my legs are hurting more than what is normal for memy legs hurt 24/7and yet after 10 years she cannot or does not see the difference in what I am saying...I hope I am not looking for sympathy( although that might not hurt every now and then) simply understanding from someone who lives with me and sees me everyday. She doesnt really understand and hopefully never will. I am still terrified of crowds...I am able to walk but a small push or shove can knock me off my feet..vanity keeps me from using a cane...I guess I feel it is bad to be different and a cane makes me different and less than normal...this feeling may be rationally stupid...but I cannot help how I feel and nothing anyone in the group says is going to make me feel differently. Our condition makes our lives far more difficult and not being able to talk about it makes it even harder. I appreciate the group and I know I can talk here...even though our lives and how TM has treated us all very differently makes each of our cases unique. Knowing that even if I try (which I have) to explain how I really feel to my loved ones,friends and co-workers, they will never understand truly frustrates me! But in my experience (10 years) there is nothing we can do about it. Hard as it seems we must accept this reality and accept we can do nothing about it. If anyone thinks I am wrong and or has a better way , than I am all earsbut please do not tell me to have A POSITIVE ATTITUDE towards my condition.I am the one in this group who has always preached staying positive and not giving in to the condition.and I have not! But that does not lessen the frustrations! I am 59 and have had this condition since one week after my 50th birthdayand I still work full time.but not one day goes by where I don't long for the old me.and the older I get I accept that the cure (which is coming) is going to be to late for me.So I just do the best I can everyday.but that does not make the sadness and frustrations go away...they simply become part of your life. Rob in New Jersey *From:* Trudy [mailto:[EMAIL PROTECTED] *Sent:* Sunday, May 27, 2007 5:09 PM *To:* [EMAIL PROTECTED]; tmic-list@eskimo.com *Subject:* RE: [TMIC] Getting Humble... I would strongly encourage anyone on this list to share with us whatever is going on in their life. I and many others have vented to this group. Whether it be about pain, husbands, wives, the children, the way others treat us in the stores and restaurants and just life in general. Bernard Pelow certainly shared his frustrations and pain as he watched his daughter go thru a horrendous time in her life. I think he might have been overwhelmed by e-mails... but we care... some know a great deal more (Our dear doctor F) and some are the caretakers who also need to have a place to vent or share or
Re: [TMIC] Getting Humble...
Those canes are also good for hitting people to get out of your way.
I like my wheelchair, if there is a group of people that I don't think they
are going to move out of my way, I just stop and let them run into me. Then
they are the ones that look stupid.
TM has so many different degree of disability. Everyone need to use the
tools that they are comfortable to use to do more.
Hope everyone is able to do more today, than yesterday,
Todd in CC, TX
Kevin Wolfthal [EMAIL PROTECTED] wrote:
Robert,
I'm not going to tell you that you should use a cane, or do anything else
you're not comfortable doing
for that matter. Just want to relate my own experiences.
I went years without using a cane, with the feeling that I didn't want to be
looked at as 'different'.
But then I started losing my footing more and falling. So I sucked it up and
got a cane. It
helped me be more mobile, my goal, and I didn't notice anyone staring, or
didn't care if they
stared.
The next step was parking. I refused to get a parking placard. Uh-uh, not me!
So I would
park far away, and sometimes lose steam and barely get back to my car. One
day, one of
my doctors told me I HAVE to get a parking placard. He said it in a
supportive, it's ok
to get one, you need it, manner. I got one and i was able to now shop in
stores that
I was just driving by before.
Last week I broke through another layer of feeling different-ness and got the
Hugo Rolling
Walker. I haven't had a chance to use it outdoors yet, but I am looking
forward to finding
out what it will allow me to do. And if I get tired it has a seat! No fear of
my legs locking
up! It will afford me a little exercise which I am woefully lacking.
I hope you can go forever without having to use any of these tools, but that's
all they are
is tools. You stated your concern about being bumped into in a crowd..I know
that
feeling well.
My 2c.
Best regards,
Kevin
Robert Pall wrote: @font-face { font-family: Bodoni MT; } @page
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Dear Trudy,
You have addressed and brought up my favorite topic! My greatest
frustrations and anxieties have been caused by my condition! I have always felt
that no one understands what i am going thru. This includes my
wife,children,friends and most of my Doctors. In some cases this is because I
try not to share with people and in other cases they do not understand. Unless
someone has walked in our shoes they cannot understand what is in our heads. I
may tell my wife my legs are hurting mewhat I really mean to say is that my
legs are hurting more than what is normal for memy legs hurt 24/7and
yet after 10 years she cannot or does not see the difference in what I am
saying...I hope I am not looking for sympathy( although that might not hurt
every now and then) simply understanding from someone who lives with me and
sees me everyday. She doesnt really understand and hopefully never will. I am
still terrified of crowds...I am able to walk but a small push or shove can
knock me off my feet..vanity keeps me from using a cane...I guess I feel
it is bad to be different and a cane makes me different and less than
normal...this feeling may be rationally stupid...but I cannot help how I
feel and nothing anyone in the group says is going to make me feel differently.
Our condition makes our lives far more difficult and not being able to
talk about it makes it even harder. I appreciate the group and I know I can
talk here...even though our lives and how TM has treated us all very
differently makes each of our cases unique.
Knowing that even if I try (which I have) to explain how I really feel to
my loved ones,friends and co-workers, they will never understand truly
frustrates me! But in my experience (10 years) there is nothing we can do about
it. Hard as it seems we must accept this reality and accept we can do nothing
about it.
If anyone thinks I am wrong and or has a better way , than I am all
earsbut please do not tell me to have A POSITIVE ATTITUDE towards my
condition.I am the one in this group who has always preached staying
positive and not giving in to the
Re: [TMIC] Getting Humble...
Hi Sally, Do you have a walker? Just wondering as it may help you in church. You would not have to watch where your feet are going so much and you would be able to meet and greet and say hi to the people in your church in stead of just 'passing by'. I know that I'm okay using my cane when I am with my husband (I can grab for him if necessary) or if I'm only going someplace where there are not many people and I can grab a shopping cart. I went to a mall yesterday to have my eyes tested (yearly event) and I took my walker as I was alone and also wanted to do a little shopping afterward. I feel much more 'secure' with my walker and am able to have a little sit down when I get weary. Off to do some planting of pots in flowers. Nice sunny weather predicted for next few days. Heather in Calgary 61 yrs old and 3.75 yrs into TM - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, May 29, 2007 8:36 AM Subject: RE: [TMIC] Getting Humble... Rob, I have probably asked this before, but How Do You Work? That's more than I've been able to do yet! I understand your feelings about crowds. With me, it's more that I'm uncomfortable b/c I feel socially 'cut off' from others, b/c I can't talk to people I'm passing - like even in the hallways at church - b/c I feel like I have to concentrate on walking; often I'm looking down to watch my footing. Especially if there's little children running around who might throw me off balance, I feel like I have to focus on my walking, which means ignoring saying hi to people I'm passing. Even during the times that I don't feel like I need my cane, I always use it at church or in crowds of people. Has you wife read the 'spoon theory'? It doesn't tell it all, but it seems to give a pretty good analogy of at least some of our limitations. I got it from someone here, so you've probably seen it; if not I'll post a copy of it. Sally -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.472 / Virus Database: 269.8.3/824 - Release Date: 5/29/2007 1:01 PM
Re: [TMIC] Getting Humble...
Sally, I have not heard of the spoon theory. Could you please post it here? Thanks Naomi C-4 quad since July 2, 2005 ** See what's free at http://www.aol.com.
[TMIC] Getting Humble
Hello All, The most painful part of being paralyzed is the complete loss of every one of my family members with whom I believed I was so close to all of my life before TM. The last person, one of my sisters-in-law, has finally written me off because of the Easter Sunday debacle when the lift on our van broke and we couldn't make it to visit her for the afternoon. This week, I tried one more time, to recocile with her and she basically told me that I am no longer considered one of the family. I have no idea where the real problem lies...cannot figure it out, but it must be me because every single one of my nieces and their families, my nephew and his family and both of my sisters-in-law (my brothers are dead and the gals have both remarried), have written me off. After losing all of my immediate family to cancer and one snowmobile accident, I did everything in my power to keep us all together. Now, the niece I was clostest to had the nerve to tell me that she thought it was always so fake. I have no idea where that comes from because I love my nieces and nephew like they are my own children. What I am wondering is: Is there anyone out there who has any idea of where to go on the Internet to find out the psychology behind their action? I have been told that it is not uncommon, that it happens all of the time. I have tried different ways of describing for an Internet search, but have had no luck in finding a link to anything meaningful. I have looked through the Archives and have found bits of conversation here and there, but nothing that really puts the reality of it out there and in words that I can understand. And, in college, I wasn't far enough along to know about these kinds of things. Who, if anyone, out there has had this kind of experience and who might be able to share a Link or two so that I can reference it for myself? And, as far as using a cane to gain mobility...you know me and my big mouth...Aren't you hurting yourself more by being frightened every time you go out? If you needed glasses or contacts you would use them, correct? What about a toupe? Now that's a frightening experience! No, I'm only teasing. We do what we must do to keep our lives as open to the world as possible; to keep our bones and muscles as strong as we can; to constantly challenge our mental capabilities da-da, da-da, da-da! Use that cane! I'll bet you are a handsome old fart who might meet and dazzle some sweet young thang if you felt confident while out and about. I love you all~ Jude ** See what's free at http://www.aol.com.
Re: [TMIC] Getting Humble...
In a message dated 5/29/2007 1:28:37 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Off to do some planting of pots in flowers. Nice sunny weather predicted for next few days. Heather in Calgary Heather, It is nice to hear that you are outside planting pots...but it works so much better,dear, when you plant the flowers instead. Sunny days to you, Jude ** See what's free at http://www.aol.com.
RE: [TMIC] Getting Humble
Jude: Through this whole ordeal with my daughter having TM, we have definitely learned who are friends and family are. There have been people who I have considered my best friends, but have yet to ever ask how my daughter is doing. There are people who I thought were just acquaintances and they have been there every step of the way through all of this. Unfortunately, I think that some people just don't know how to deal with people that have disabilities . I think that is so sad b/c you guys are no different than the rest of us except that you have limitations on what you can and can't do. It doesn't change who you truly are. I will never forget the time, 2 years ago, when my daughter was in Hershey Medical center and they released her for a few hours for us to take her out in public to make sure that we could get around with her and her wheelchair before we were able to take her home. We took her to the Hershey Chocolate factory. The people that work there were the most helpful people that we have ever come across, however, the people that were visiting the gift shop were the most arrogant people. My daughter was sitting in her wheelchair looking at a display and some woman just walked right up between her and the display and stood there as if she didn't even see my daughter there. I truly believe that everyone should be required to take a course in school and have to use the wheelchair, cane, crutches, each for a period of time so that they can get a feel for what others have to go through. I never noticed certain cracks in sidewalks, etc until my daughter was in the wheelchair and on crutches. I never really noticed how some hospital gift shops had their isles so close together that a wheelchair couldn't even fit through. Things like that definitely start becoming more visible when you deal with a disabled person. Alright, there were my two cents. Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, May 29, 2007 4:45 PM To: tmic-list@eskimo.com Subject: [TMIC] Getting Humble Hello All, The most painful part of being paralyzed is the complete loss of every one of my family members with whom I believed I was so close to all of my life before TM. The last person, one of my sisters-in-law, has finally written me off because of the Easter Sunday debacle when the lift on our van broke and we couldn't make it to visit her for the afternoon. This week, I tried one more time, to recocile with her and she basically told me that I am no longer considered one of the family. I have no idea where the real problem lies...cannot figure it out, but it must be me because every single one of my nieces and their families, my nephew and his family and both of my sisters-in-law (my brothers are dead and the gals have both remarried), have written me off. After losing all of my immediate family to cancer and one snowmobile accident, I did everything in my power to keep us all together. Now, the niece I was clostest to had the nerve to tell me that she thought it was always so fake. I have no idea where that comes from because I love my nieces and nephew like they are my own children. What I am wondering is: Is there anyone out there who has any idea of where to go on the Internet to find out the psychology behind their action? I have been told that it is not uncommon, that it happens all of the time. I have tried different ways of describing for an Internet search, but have had no luck in finding a link to anything meaningful. I have looked through the Archives and have found bits of conversation here and there, but nothing that really puts the reality of it out there and in words that I can understand. And, in college, I wasn't far enough along to know about these kinds of things. Who, if anyone, out there has had this kind of experience and who might be able to share a Link or two so that I can reference it for myself? And, as far as using a cane to gain mobility...you know me and my big mouth...Aren't you hurting yourself more by being frightened every time you go out? If you needed glasses or contacts you would use them, correct? What about a toupe? Now that's a frightening experience! No, I'm only teasing. We do what we must do to keep our lives as open to the world as possible; to keep our bones and muscles as strong as we can; to constantly challenge our mental capabilities da-da, da-da, da-da! Use that cane! I'll bet you are a handsome old fart who might meet and dazzle some
Re: [TMIC] Working With a Disability in California - Barbara, Everyone
_ERISA Law Group: Disability Lawyers_ (http://www.theerisalawgroup.com/?gclid=CMWBmbK3tIwCFQavQAodvxiCLA) this is in California ** See what's free at http://www.aol.com.
Re: [TMIC] Getting Humble...
Hi Heather, I got rid of my walker as I haven't used it in so long (and it didn't have a seat anyway). At times I've been so much better, I didn't even need the cane. But recently (again!) I feel like I've regressed! I even thought about it (the old walker) in the back yard today, when I went out to check my plants! And you do make a good point - about being able to look up and talk to people! As it is (unless it's a really good day) I'll stop and maybe even put my hand on something to be sure I'm stable, before I look up and answer, if someone talks to me while I'm walking. Sally in Hawaii64, TM for 2 yrs
[TMIC] Spoon Theory
Someone posted this on the TMIC awhile back and I copied it. For those of you who haven't seen it, here it is: The Spoon Theory ?xml:namespace prefix = o ns = urn:schemas-microsoft-com:office:office / Written by a woman named Christine My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I dont try to explain this, how could I ever expect her to understand. If I cant explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said Here you go, you have Lupus. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy, is having to make choices or to consciously think about things when the rest of the world doesnt have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a loss of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didnt understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of spoons. But when you have to now plan your day, you need to know exactly how many spoons you are starting with. It doesnt guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. Ive wanted more spoons for years and havent found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her
Re: [TMIC] Getting Humble...
I guess this shows who's observant!I even replied to the message and didn't catch that! Off to do some planting of pots in flowers. Nice sunny weather predicted for next few days. Heather in CalgaryHeather, It is nice to hear that you are outside planting pots...but it works so much better,dear, when you plant the flowers instead.
Re: [TMIC] Getting Humble...
Hi Sally, The kind of walker I'm talking about is the one that everyone seems to refer to as a 'rollator'. It has the wheels and a seat and also a little wire basket (at least mine does). It is just do darn handy. I am just not able to manoeuver in many people or on my own for too long with just the cane. I stop and put my hand on things all the time. I was asked one time by the fellow at the hospital who was fitting me for wheelchair (which I don't need now - except occasionally) if I was walking like 'Spiderwoman' at home. I was. He was just teasing but it was an apt description. Maybe you should consider a new walker with wheels and seat etc for those 'not so good days'. Hawaii, is that where you live? Never been there but I'm sure the plants in your garden are very lush compared to what we can grow here in dry Calgary. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, May 29, 2007 4:52 PM Subject: Re: [TMIC] Getting Humble... Hi Heather, I got rid of my walker as I haven't used it in so long (and it didn't have a seat anyway). At times I've been so much better, I didn't even need the cane. But recently (again!) I feel like I've regressed! I even thought about it (the old walker) in the back yard today, when I went out to check my plants! And you do make a good point - about being able to look up and talk to people! As it is (unless it's a really good day) I'll stop and maybe even put my hand on something to be sure I'm stable, before I look up and answer, if someone talks to me while I'm walking. Sally in Hawaii 64, TM for 2 yrs -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.472 / Virus Database: 269.8.3/824 - Release Date: 5/29/2007 1:01 PM
Re: [TMIC] Spoon Theory
Here is the website for this. I may have been the one who copied and pasted it before. There is more info on the website. http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php I tried just clicking on it but you will have to copy and paste it into the web. I'm not too computer literate. Turn it on. If it doesn't work then turn it off. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, May 29, 2007 4:56 PM Subject: [TMIC] Spoon Theory Someone posted this on the TMIC awhile back and I copied it. For those of you who haven't seen it, here it is: The Spoon Theory Written by a woman named 'Christine' My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said Here you go, you have Lupus. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy, is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a loss of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of spoons. But when you have to now plan your day, you need to know exactly how many spoons you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I've wanted more spoons for years and
Re: [TMIC] Spoon Theory
Oops, it does work if you just click on the site below. Heather - Original Message - From: Heather Pieter To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, May 29, 2007 6:02 PM Subject: Re: [TMIC] Spoon Theory Here is the website for this. I may have been the one who copied and pasted it before. There is more info on the website. http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php I tried just clicking on it but you will have to copy and paste it into the web. I'm not too computer literate. Turn it on. If it doesn't work then turn it off. Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Cc: tmic-list@eskimo.com Sent: Tuesday, May 29, 2007 4:56 PM Subject: [TMIC] Spoon Theory Someone posted this on the TMIC awhile back and I copied it. For those of you who haven't seen it, here it is: The Spoon Theory Written by a woman named 'Christine' My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said Here you go, you have Lupus. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy, is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a loss of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of spoons. But when you have to now plan your day, you need to know exactly how many spoons you are starting with. It doesn't guarantee that
