Not sure how to take this comment.

[Ojibajo]

Maybe this isn't worth posting to the forum but I don't have a lot of other people to talk to about this but I had a few comments to make to me the other day and I wasn't really sure how to take it.  I haven't told my mom and dad about any of this but I did tell my step mom (who is actually divorced from my dad) because she happens to be the least neurotic and most mature in situations like this.

Well she made a comment about my cousin's wive that she "had" MS but she changed her diet and I don't remember if she said she got rid of her symptoms or her MS, but it made me feel a little like she thought that I just needed to do more to "fix" this or that I somehow caused this.  I mean I have not doubt that a healthy and positive lifestyle has it benefits but I didn't really know how to take her remark. I'm sure she meant well but now what I was wanting to hear. Then she said that she found a good physical therapist with a new technique and not longer needed her can. I said, "Wow! That's great!" and it is great. But then she went on to say how disciplined she was about her therapy etc. and I again though, "Does she think that I am causing this or making things worse by not fighting hard enough or being disciplined enough?"

I don't know. Maybe I am just thinking about this too much. I probably am. I guess that I need to build a bridge and get over it.

Amy

[sllowe]

Hi there,

It's comments like those that send up all of our red flags because we know scientifically diet doesn't cure MS. Though, there are those that do believe that hype, and my no means do I disrespect those thoughts,I just choose to believe the research.  

You'll be the best judge on this but what I hope for is that since she's the one you chose to tell for now that in the end she's the type who would be more willing to learn what the disease does, how it can respond to DMDs for some, and then ultimately learn how it is affecting you and what you can and cannot do about it.

So many people don't realize the differences from one person to the next w/MS, though we do have those commonalities. It's great if cousin's wife was able to build some strength for her legs, and it's wonderful if she's feeling better. Just hope she's treating the disease too.

I don't think your being sensitive - just thing your flags went up because of what you know that she doesn't and your mind went ut oh, lol  

-shell
p.s. She'd best not think you caused this, or that your not fighting this! We've got your back :)

[Ojibajo]

LOL @ wandful of crystals. Maybe we could all just visit Madam Pomfrey in the Infirmary at Hogwarts and drink magic potion! (Sorry, I'm a big Harry Potty geek). :)

[jensequitur]

Hah... did you see my post about my friend's mom with the wand full of crystals and b.s.?  She told me if she waved it at a body part that it would be filled with energy, and wanted to try it on me.  I told her no, that it was junk science.  Which was a bit blunt, but then I've always been rather straightforward.  There are so many 'easy' answers out there that are really just a way for unscrupulous people to make money.

[HoustonDogLove]

Everyone has some cure for something. Everyone knows it all OR at least they THINK. The thing is you have to find something you're interested in, if you want to or it will be a waste. It is all about perception. If you don't believe in something it's probably not going to work. Some of these things have some basis, some of them may not. The 8 eggs might be good because of all the amino acids which are the building blocks of everything living. But I can't hardly stand to eat an egg (unless it's in cake, lol ), So that is probably something I'm not wiling to do. I think eating 8 eggs/day would stress me out so much I would go into a spell.JK

If you don't want to find a fix-it-all cure don't wast your time cause there is more out there than the day is long. I have read about bee-sting/venom something, Curry, and my grandmother thinks I need to take Oil of Oregano from the Himalayan Mountains cause it helps her asthma, but I don't have asthma. You can spray WD-40 on all your aches and pains if you believe in it.

I went into a vitamin world yesterday and was looking at all their products/classes etc. I picked up a product which was a super anti-oxidant. Read the label and it had just basic stuff in it like beta-carotine, that you should be getting daily if you eat a vegetable here and there.

I could go on forever, just make sure if you choose something, choose it for your self. Do your own research...Egg-pushers are not much more different than drug-pushers. We could all go buy a crack-rock because the druggie on the corner said it will help your symptoms.

[Lulu54]

Like we have talked about before here on the forum, we have to be wise and choose how we want to use our energy - I find combatting well intentioned people with arguments about why their proposed cures and treatments don't work will usually fall on deaf ears.  And it expends energy I would rather put into other things.

Consequently I really have stopped disputing - I usually will just thank them for their concern and leave it at that.

All the examples given here just make me cringe about how damaging little bits of information can be without having the whole story.  

I would imagine the "get outside" means she has heard the reports on Vitamin D and it's possible role in MS, but she sure doesn't get the whole story.

hang in there, Lulu

[Ojibajo]

I don't know if this is stupid thing to say or not, but I was shocked to hear that your service dog is a Dalmatian, since I have never seen a Dalmatian service dog. I usually always see Labradors or Golden Retrievers.

Thanks for the comments,I figure that she is just trying to be helpful. When I told my boss, I really didn't want to because she is the queen of stupid comments but I sort of had to since I am missing so much work due to doctors appointments and tests. She told me I needed to get outside everyday. (Oh yeah, that will cure me!) I told her, I don't think you understand what I am going trough. There are days that I can't get out of bed and she told me to force myself. What a %#$@%#$@! (Insert word of your choice.) How dare she?

[HVAC]

I had all kinds of reactions my brother and husband were dead silent when I told them that was unnerving.

My best friend sent me lots of articles about tick born illnesses. Told me these goggles with lights would fix my brain. All kinds of well meaning stuff.

Many friends said I know so and so with MS and they have no symptoms.

My PCP said may be I should not have sent you to the Neurologist.

I do not take what people say but the intent. It is like people say the stupidist things about my Service Dog Polly because she is a Dalmatian. Now I just smile and go on.

Alex

[ANonnyMouse]

I tend to be a bit more snippy when I hear about this sort of thing, so would be inclined to ask "Does her neurologist also consider her cured, or just in remission?"

I have had similar comments when I was (clinically) depressed a few years ago.My sister thought it helpful to tell me that if only I went for a walk every day and ate more vegetables I'd cure my depression, because when she was depressed she just "decided not to be", started going for walks and eating better, and that cured her depression.

It's great that some people can reduce their symptoms with dietary and lifestyle changes, but i believe touting it as a cure can be dangerous, and feels like an attempt to shift the "blame" for the illness squarely onto the sufferer.

[beema36]

I agree try not to take it personally. I have one friend who contends if I would do all natural cures and throw away my meds I would be cured and a neighbor who knows a Dr in Ohio that supposedly cured himself with herbs and vitamins and is in his 80s and if I would just go see him I would be totally cured. Sometimes it really is hurtful. I am trying to just smile and say thank you I will take that into consideration.
Beema

[candy158]

Hi sweetie,
Everyone has their own opinions.  As we all know, as we get older, alnd have children, and such, we get lots of UNSOLICITED advice, and we have to know when to say "thank you " and then let it go.

It is a very hard thing to do, especially when we have MS as sometimes our wires aren't connected quite right at the time, and we can take things in the wrong way.  

But, I second and third what the other 2 ladies said......... and taking things in stride does come with time and ex[perience.  

Good luck to you, and try not to take everything personally, as some people just want to tell you things , and they don't realize that EVERYONE wants to tell us things, ans sometimes we just get over loaded.

Take care, and remember to breathe...!!!!!

Candy

[addicted2harleys]

Hi, Amy-

Sarah pretty well summed up what I was gonna say so there is no need to repeat.  :)

But, I will share something that just happened to me.  A friend of mine has another friend with MS.  Apparently this other friend went to a herb type person (forget what they are called...sorry) and she was told to eat 8 eggs a day and also some herb thing.  This friend did as she was told and she feels better than she ever has.  She feels she is cured.  

So, my friend was telling me that I need to eat 8 eggs a day so I can feel better, too.  She has been insistent about this the last three times I have talked to her.  I, honestly, don't know what to say to her about this.  I told her the first time that I trust the science so I will stick to what my doctors tell me.   She still pushes the eggs.  

So, maybe we all should start eating 8 eggs a day so our MS will be cured!  Lol.  I sure wish it were that easy.  

My advise, I guess, is to just take things in stride, you know?   I am sure this will not be the only person you will come across with comments like this.  I know I have.  The egg incident was just the most recent one....

Hang in there,
Addi

[Sparkysarah]

Hi Amy

It is often easy to misinterpret or get crossed wires with people when communicating and you know your relations much better than anyone else so I would not want to try and guess what your step mum meant. It may be that she was trying to be positive and not to put a negative spin on things and just giving you info...but you are likely to come across many people who do not fully understand the implications of MS or who try and offer you "good advice".   I would not read too much into her comments if you can...I have found that one of the best ways I can help myself is to try and reduce my stress levels wherever possible and keep calm.  You are very welcome to come on the forum any time and have a moan here and tell us what you are feeling and you will always find a sypathetic ear.

Best wishes

Sarah  :) xxx