Aa
I am just so depressed! :(
I try to help my blood relation a little by telling them to get their Vit D3 levels checked to make sure they ok.
I shared with them that my levels are low but still in the normal range. Even so my doctor wants me to take supplements to try and bump that D3 level up.
My mom and sisters have always told me I needed to get out into the sun and get a tan because I am too white.
Well excuse me but I was born white! That might have something to do with it. Maybe if one of my parents had decided to marry someone with dark skin I might not be white. :0)
I used to spend a lot of time outside when I was young and did get a fair amount of sun. There was a point in my 20's when I started to get sun poisoning when I'd get a burn so started to be very careful about getting too much sun.
I do get outside on a regular basis in the summer. My arms usually tan and so does my face. But I live in Northern Indiana and stay inside when it is cold.
So now the I told you so's have started. I should have been out in the sun like they told me.
Then there is the walker issue. My mom does not want me to use it unless I ABSOLUTLY have too. My nieces mother-in-law has had MS for 20 years and does not need a walker because she is "careful" about how she walks.
I am careful about how I walk too but my legs just give out. I bend over to pick something up and I just go to the ground.
My legs wear out quickly and burn like fire.
I wish they understood and didn't make me feel like I have to explain or defend myself. I am so tired, my vision is just awful, and I don't feel that well because I want to sleep.
I just need a place to gripe I guess. You know, when I post I always worry one of my family members might be reading. I sure hope not. I am not trying to offend or hurt anyone's feelings. Just venting because what is happening to me is very difficult. I feel like my life is being sucked away from me and I can not stop it.
I have to have a walker because it has been determined I should not walk unassisted. how much longer until it is determined I can not drive? If I could put a crying face here I would because I am........................
LA
I shared with them that my levels are low but still in the normal range. Even so my doctor wants me to take supplements to try and bump that D3 level up.
My mom and sisters have always told me I needed to get out into the sun and get a tan because I am too white.
Well excuse me but I was born white! That might have something to do with it. Maybe if one of my parents had decided to marry someone with dark skin I might not be white. :0)
I used to spend a lot of time outside when I was young and did get a fair amount of sun. There was a point in my 20's when I started to get sun poisoning when I'd get a burn so started to be very careful about getting too much sun.
I do get outside on a regular basis in the summer. My arms usually tan and so does my face. But I live in Northern Indiana and stay inside when it is cold.
So now the I told you so's have started. I should have been out in the sun like they told me.
Then there is the walker issue. My mom does not want me to use it unless I ABSOLUTLY have too. My nieces mother-in-law has had MS for 20 years and does not need a walker because she is "careful" about how she walks.
I am careful about how I walk too but my legs just give out. I bend over to pick something up and I just go to the ground.
My legs wear out quickly and burn like fire.
I wish they understood and didn't make me feel like I have to explain or defend myself. I am so tired, my vision is just awful, and I don't feel that well because I want to sleep.
I just need a place to gripe I guess. You know, when I post I always worry one of my family members might be reading. I sure hope not. I am not trying to offend or hurt anyone's feelings. Just venting because what is happening to me is very difficult. I feel like my life is being sucked away from me and I can not stop it.
I have to have a walker because it has been determined I should not walk unassisted. how much longer until it is determined I can not drive? If I could put a crying face here I would because I am........................
LA
Gosh, doesn't everyone know that MS is exactly the same for every person?
Doesn't everyone know that if we just shake it off and try a little harder that it will get better?
Doesnt' everyone know that balance is really just a matter of concentration???
As my five-year-old David tells me frequently when I hand down little pearls of wisdom to David and his brother: "dad, that was sarcasm...."
Yes David, you are right.
So sayeth the right honorable OperaMBA on this date in history.
Doesn't everyone know that if we just shake it off and try a little harder that it will get better?
Doesnt' everyone know that balance is really just a matter of concentration???
As my five-year-old David tells me frequently when I hand down little pearls of wisdom to David and his brother: "dad, that was sarcasm...."
Yes David, you are right.
So sayeth the right honorable OperaMBA on this date in history.
Thank you all so much for your reply. Today is another day and I am feeling a bit better.
I live in a little town of 5000 people. We don't even have a taxi. I do believe my families reactions are out of fear and not understanding.
The problem is it makes me feel like it is my fault I have MS. I know that is not reasonable and I am sure they do not mean it that way but it comes out that way to me.
Thank you all for your words because they do help so much. I have decided I am not going to worry about explaining too much to anyone because they really can not be made to under stand.
LA
I live in a little town of 5000 people. We don't even have a taxi. I do believe my families reactions are out of fear and not understanding.
The problem is it makes me feel like it is my fault I have MS. I know that is not reasonable and I am sure they do not mean it that way but it comes out that way to me.
Thank you all for your words because they do help so much. I have decided I am not going to worry about explaining too much to anyone because they really can not be made to under stand.
LA
Hello LA,
Well, I have been there my friend. My family has decided to ignore Craig's problem. And Craig's brother and I have had to mend over a major outburst I had over his lack of understanding and disregard for the seriousness of Craig's illness. (He thought Craig would just get better and things would be normal again. He also told me to move on with out Craig but that's another post!!).
I have also told Craig's family about vitamin D3 and they don't bother getting tested. His father went on it, but that's it. You need to tell your family that you would need to stand out in the sun naked and unprotected (no sunscreen) to get your body to make a high level of D3 to help you. And also that with the pollution, there is less ability of the body to make D3 from the sun.
The level that you need cannot be found in foods or sun. You need supplements. For your level to be up at 50 to fend off disease, you have needed supplements from the beginning. Tell them all the sun in the world may not have helped you.
As for the walker, I think this is part of their denial. They don't want to see you with it because then they will have to come to terms with what is happening to you. Right now, they may be pushing it to the back of their mind.
Although you need the walker for your own safety, to them it may look like you are much worse off than the other person they know with MS. And it is very hard for them to accept.
First and foremost, you have to do what is best for you and take care of yourself. Your kids deserve that too.
Best wishes LA. You have had a very difficult year. Keep the faith.
Elaine
Well, I have been there my friend. My family has decided to ignore Craig's problem. And Craig's brother and I have had to mend over a major outburst I had over his lack of understanding and disregard for the seriousness of Craig's illness. (He thought Craig would just get better and things would be normal again. He also told me to move on with out Craig but that's another post!!).
I have also told Craig's family about vitamin D3 and they don't bother getting tested. His father went on it, but that's it. You need to tell your family that you would need to stand out in the sun naked and unprotected (no sunscreen) to get your body to make a high level of D3 to help you. And also that with the pollution, there is less ability of the body to make D3 from the sun.
The level that you need cannot be found in foods or sun. You need supplements. For your level to be up at 50 to fend off disease, you have needed supplements from the beginning. Tell them all the sun in the world may not have helped you.
As for the walker, I think this is part of their denial. They don't want to see you with it because then they will have to come to terms with what is happening to you. Right now, they may be pushing it to the back of their mind.
Although you need the walker for your own safety, to them it may look like you are much worse off than the other person they know with MS. And it is very hard for them to accept.
First and foremost, you have to do what is best for you and take care of yourself. Your kids deserve that too.
Best wishes LA. You have had a very difficult year. Keep the faith.
Elaine
LA,
When on this earth are people going to realize that AIN'T one of us exactly alike?
Our fingerprints are not alike - nothing!
Next time, you might just have to in some sort of way that will serve you best, just ask them out flatly - "Do I LOOK like my neices mother in law?" Or, Montel Williams? Or, like (heck I don't know - throw some names at them) other people? They should respond "well, no." At which point, then you can just stare at them and hope they hear themselves!
It's ridiculous. I'm sorry you are in this position. You should not have to defend your limitations. Nor, what you use to get through those limitations. Folks need to get educated if they are so inclined to know more about MS, or any other disease for that matter.
Maybe we should all do a commercial and enlighten them a little on MS.
I'm sorry LA - you don't need this on top of everything. It's been some year for you and they need to back off a bit and recognize this. I know they are the ones to help you out and you love them dearly, so I'm sorry to be coming down so hard especially w/family. But, being helpful is going to have to come with some extra understanding that no one is alike in MS and if you need the walker and she doesn't then that is exactly what it is. She doesn't need it or she'd be using it. It's a guarantee.
I bathed in the sun all through my teen years and as an adult most weekends. Didn't change my outcome.
Much love and understanding friend,
ttys,
Shell
When on this earth are people going to realize that AIN'T one of us exactly alike?
Our fingerprints are not alike - nothing!
Next time, you might just have to in some sort of way that will serve you best, just ask them out flatly - "Do I LOOK like my neices mother in law?" Or, Montel Williams? Or, like (heck I don't know - throw some names at them) other people? They should respond "well, no." At which point, then you can just stare at them and hope they hear themselves!
It's ridiculous. I'm sorry you are in this position. You should not have to defend your limitations. Nor, what you use to get through those limitations. Folks need to get educated if they are so inclined to know more about MS, or any other disease for that matter.
Maybe we should all do a commercial and enlighten them a little on MS.
I'm sorry LA - you don't need this on top of everything. It's been some year for you and they need to back off a bit and recognize this. I know they are the ones to help you out and you love them dearly, so I'm sorry to be coming down so hard especially w/family. But, being helpful is going to have to come with some extra understanding that no one is alike in MS and if you need the walker and she doesn't then that is exactly what it is. She doesn't need it or she'd be using it. It's a guarantee.
I bathed in the sun all through my teen years and as an adult most weekends. Didn't change my outcome.
Much love and understanding friend,
ttys,
Shell
Have you read the Health Pages entry," What I want my friends and family to know", and the great letter entitled something like "MS challenge for life!" ?
Maybe you can take that as a guideline, and put down your own personal feelings and trials and communicate to your family how you are feeling, and how it makes you feel when they advise you to do something like someone else did, or that you know very well the you're a white girl. That is actually healthy, if you get enough sun to keep you healthy, which isn't a whole bunch.
This is one of the ways that you can take back some control of your life, and you can work on it and carefully word it so that you get your point across clearly with a minimum of hurt feelings. Remember; you don't need to walk around protecting others feelings without asking them to consider how you are truly feeling.
I appreciate your wanting to help your family by asking them to get testing done. I discovered I had Barrett's Esophagus, a condition caused by reflux that can become cancerous. I told my dad that he needed to get an upper endoscopy, since he had indigestion for as long as I can remember.
He said he was fine, that Pepcid was controlling his symptoms. Then a shadow showed up on a lung X-ray, tests followed, and it turned out he had esophageal cancer from Barrett's esophagus, and passed away 4 months after his diagnosis. In that four months, my four other siblings had upper endoscopies (they're all fine, thank God!).
Its OK to cry. It's OK to vent. Its healthy. Just keep walking with that walker and stay strong. Do what you can to keep from falling, and be proud that you are unique and not just like your nieces mother-in-law.
How is the bus system in Northern Indiana? Is there a way to get around if it becomes apparent that you can't drive? For that matter, sorry I don't know the answer to this, but do you have good strength in your hands and arms? It is fairly easy to get a car outfitted with hand controls. I knew a guy with spina bifida, couldn't use his legs at all, and he drove just fine with his hand controls.
I live in Portland OR, where the transit system is pretty great, but I would still hate to not be able to drive my little Kia. As it is, I limit my driving because of dizziness and fatigue, as well as a right hand and forearm that get pretty intense nerve pain.
I'm just trying to come up with some ideas for you to consider when you get though with venting and crying and say "what next?".
I'm sending you a big hug, including a good shoulder for crying on,
Kathy
Maybe you can take that as a guideline, and put down your own personal feelings and trials and communicate to your family how you are feeling, and how it makes you feel when they advise you to do something like someone else did, or that you know very well the you're a white girl. That is actually healthy, if you get enough sun to keep you healthy, which isn't a whole bunch.
This is one of the ways that you can take back some control of your life, and you can work on it and carefully word it so that you get your point across clearly with a minimum of hurt feelings. Remember; you don't need to walk around protecting others feelings without asking them to consider how you are truly feeling.
I appreciate your wanting to help your family by asking them to get testing done. I discovered I had Barrett's Esophagus, a condition caused by reflux that can become cancerous. I told my dad that he needed to get an upper endoscopy, since he had indigestion for as long as I can remember.
He said he was fine, that Pepcid was controlling his symptoms. Then a shadow showed up on a lung X-ray, tests followed, and it turned out he had esophageal cancer from Barrett's esophagus, and passed away 4 months after his diagnosis. In that four months, my four other siblings had upper endoscopies (they're all fine, thank God!).
Its OK to cry. It's OK to vent. Its healthy. Just keep walking with that walker and stay strong. Do what you can to keep from falling, and be proud that you are unique and not just like your nieces mother-in-law.
How is the bus system in Northern Indiana? Is there a way to get around if it becomes apparent that you can't drive? For that matter, sorry I don't know the answer to this, but do you have good strength in your hands and arms? It is fairly easy to get a car outfitted with hand controls. I knew a guy with spina bifida, couldn't use his legs at all, and he drove just fine with his hand controls.
I live in Portland OR, where the transit system is pretty great, but I would still hate to not be able to drive my little Kia. As it is, I limit my driving because of dizziness and fatigue, as well as a right hand and forearm that get pretty intense nerve pain.
I'm just trying to come up with some ideas for you to consider when you get though with venting and crying and say "what next?".
I'm sending you a big hug, including a good shoulder for crying on,
Kathy
Hey, could you use a hug? Some people are just so thoughtless! You just have a good cry and know we care! I am whiter than white and it used to bother me a lot! But, I really don't want skin cancer, so I cover up and use sunscreen, etc. I just saw on some show this morning where they were talking about children needing vitamin D! So someone said something about they should just play outside for 20 minutes a day! Then the doc who was on said, no - even 15 minutes a day unprotected can lead to skin cancer! So, I'm actually glad we have Vit. D in pill form! And if you don't like my white legs, don't look!! As far as the walker goes, no two people are alike and if you need the walker, use it! MS is not a one size fits all kind of disease! Well, there, I've had my say! Have another Kleenex, blow your nose, and smile! You are loved! Just the way you are, too!
Your white legged compadre!
Your white legged compadre!
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