It was one of those beautiful days at the farmers market - I was in a sun dress and all. Met up with Ryan for a crepe (ham, cheese, tomatoes and olives) drank coffee from home. I wished he noticed my weight loss efforts - it wasn't like I lost a couple pounds but 20!!! He says I always look good to him - but come on 20 pounds and you don't notice thats a little thick headed. I even gave him hints like I am able to wear clothes I haven't been able to wear in a long time. Nothing - but he noticed Lindsays weight loss - and he lives in the same house as her. His excuse was that she is out of shape and a big girl. But that doesn't make sense because 20 pounds on a big girls in proportioned to 20 pounds on someone smaller should be noticed more. Ugg guys. At least he noticed the dress - but I think that more of a pretty garment I am wearing than noticing my physical change. Anyways that put a damper on my lovely day I tried to turn it around and be silly by writing on his really dirty car (I < 3 pnut) and then continued to tattoo him with a pen - MINE & I < 3 pnut. Later I found out he wiped it off before he went out for the night. I wasn't like I put it somewhere visible. =*(
After he left to go back to work I shopped for my vegetables for the week. I ended up stopping an old man from forgetting his prescription glasses at a booth. He was so thankful that he asked to pay for my grapes without my knowing. What an unexpected surprise! I just shows that good deeds don't go unnoticed.
Thursday, September 29, 2011
Friday, September 23, 2011
Letter to People Without Hepatitis C by Bek Oberin
Has anyone seen this or know the author. I've found it in Lupus, MS, so why not MG?
What Having An Autoimmune Disease Means...
Having one means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about autoimmune diseases and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me:
Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain, weakness and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, weak, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.
Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With this illness it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed. We have good days and bad, and during our good days we may truly not "look sick", but we are.
Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what autoimmune disease does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!
Please understand that this is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.
Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.
Another statement that hurts: "You just need to push yourself more..." Obviously, neurological conditions directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. My condition causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.
When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. The fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my condition at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.
When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. Flare ups do not wait, nor do they forgive... when we say "please ... now!" it means now.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of autoimmune disease, the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.
In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...
I need you to understand me.
What Having An Autoimmune Disease Means...
Having one means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about autoimmune diseases and it's effects on us; and many of those who think they do know are actually misinformed. In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me:
Please understand that being sick does not mean I'm no longer a human being. I have to spend most of my day in considerable pain, weakness and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work, and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it for a week or two, but I've been sick for years. I can't be miserable all the time, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm still not in a lot of pain, weak, or extremely tired, or that I'm getting better, or any of those things. Please, don't say "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.
Please understand that being able to stand for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn't mean I can do the same today. With a lot of diseases and disorders one is either paralyzed, or they can move. With this illness it's far more confusing: one hour or day or week or year we may have normal - or almost normal - mobility; the next hour or day or week or year we may be unable to sit, stand, walk, think, remember, or even get out of bed, we may be unsociable or depressed. We have good days and bad, and during our good days we may truly not "look sick", but we are.
Please understand that making plans other than immediate ones is a crap shoot at best, because we can't know how we will feel or what our physical, mental or emotional condition will be. If we seem to hedge about making plans with you, please understand it's because we truly don't know if we will be able to honor them. The same applies if we have to cancel plans previously made or invitations, even at the last minute - it is not personal, and it makes us as frustrated and sad as it does you! That is what autoimmune disease does to us, and it's how we must live our lives. It is not just a matter of sucking it in, or bucking up, or psyching ourselves up; believe me if we could, we would!
Please understand that this is variable - with each person and from person to person. It is quite possible and often all too common, that one day I can walk to the park and back, or bicycle 2-4 miles, or swim 12 laps, or even run with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without a cane, walker or other mobility aid. Please don't attack me when I can't do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to our own frustration. The very act of planning while not knowing what condition we will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may well dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.
Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take these vitamins, herbs, tonics and snake-oil cures will frustrate me to tears and is totally incorrect. If I was capable of doing things, don't you think I would? And when I am capable, I DO! I work with my doctors and physical therapists and follow the exercise and diet plans they prescribe.
Another statement that hurts: "You just need to push yourself more..." Obviously, neurological conditions directly impacts muscles and ours do not regenerate as quickly as yours do. Pushing ourselves beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what we can when we can is excellent therapy both physically and mentally... and we do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains us and exhausts us exponentially more than a normal, healthy person our age (whatever age that is); our recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. My condition causes secondary depression in and of itself; our depression may escalate when dealing with days on end of constant pain and limited mobility or cognitive function. We are NOT tired because we are depressed! We are depressed because we are so tired.
When I say I can't do something because I am so fatigued, please don't say "Oh I know what you mean! I am worn out too, but..." because you don't. The fatigue is not like any tiredness you have ever experienced, nor has anyone who does not have fatigue-producing disorder. I know you mean well, but it's irritating to hear because it tells me you don't understand me or my condition at all. I may well be just plain tired - we get normally tired during remission phases just as any normal person does - but trust me: we know the difference, and it's huge.
When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can't walk another 5 blocks to the car, or walk back down the hill I just climbed up. Don't baby me, don't hover over me, don't do things for me unless I ask - we are very proud and never want to be a burden. Our independence, or what we can retain of it, is of paramount importance to us! Please help by listening to and believing what we say we need and act upon it accordingly and as quickly as possible. You wouldn't question a known diabetics request for orange juice or insulin, so please don't question us or urge us to 'keep on... we are almost there!' Not unless you are prepared to a) carry us the rest of the way or b) call 911. Flare ups do not wait, nor do they forgive... when we say "please ... now!" it means now.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my family and friends suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, all forms of autoimmune disease, the world would know about it. If you still insist on promoting 'cures' to me or giving me 'this will make you better' advice, do so; but understand I won't rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors.
In many ways I depend on you... people who are not sick... I need you to visit with me when I am unable to go out; sometimes I may need you to help me with shopping, cooking or cleaning; sometimes I may even need you to do those things for me. I may need you to go with me to my doctor appointments to help me remember and understand their direction, or I may just need a ride. I need you on so many different levels... as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it's possible...
I need you to understand me.
Bearboat Pinot Noir 2008 Sonoma Coast
Bearboat Pinot Noir 2008 Sonoma Coast
Camping trip at Dillon Beach
This is the story of Mac and Zeke, two inquisitive bears who find themselves on a quest to enjoy life's great curiosities. With no actual destination in mind, they prefer to take in their surroundings and simply enjoy the journey. You'll find them adrift wherever the current and the occasional row may take them.
The dramatically cool and foggy climate of the Sonoma Coast produces a Pinot Noir that is elegant and intensely structured. The aromas are a blend of strawberry and red cherry with a toasty vanilla spice flower and lingering finish. Pairs beautifully with pork tenderloin or herb-crusted salmon. (Or hotdogs and barbeque beans =))
Camping trip at Dillon Beach
This is the story of Mac and Zeke, two inquisitive bears who find themselves on a quest to enjoy life's great curiosities. With no actual destination in mind, they prefer to take in their surroundings and simply enjoy the journey. You'll find them adrift wherever the current and the occasional row may take them.
The dramatically cool and foggy climate of the Sonoma Coast produces a Pinot Noir that is elegant and intensely structured. The aromas are a blend of strawberry and red cherry with a toasty vanilla spice flower and lingering finish. Pairs beautifully with pork tenderloin or herb-crusted salmon. (Or hotdogs and barbeque beans =))
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