Do you look sick/disabled? My recent adventures...
 

Well, previous to my HiCy experience, I didn't look "sick" or disabled. Yes, I used a cane at times (less than I should've used it, that's for sure!) - but I didn't look disabled, ya know? I didn't exactly get funny looks when parking in a disabled parking spot - I always felt weird and would almost unconsciously limp as I walked away from or towards my car. I know, insane. :eek:

Now having undergone chemo - while I still don't look "sick" - I am, however, bald. I don't go out bald - I usually wear a hat (a funny hat that my friend crocheted that looks like one of the Ugly Dolls). However, being that it is 100+ degrees here, wearing a crocheted hat is hard!! My poor sweaty head. LOL. So, I switched to like a scarf type thing (not a big fancy one but not a bandana...somewhere in between). Well, it's pretty unmistakable that I've had chemo.

I will tell you this much: people - well, strangers, are a lot nicer to me. Not that they weren't nice before, but it's almost like they trip over themselves to help me.

Example #1: I was in Best Buy (electronics store) - and I was at the register and was asking a question about a product and I wanted to know where to find it in the store. Well, the employee said it was in the back of the store and that he'd go run and get it for me. I told him that I'd go get it - but he totally insisted on going for me. If you don't know - this isn't usual behavior of people at Best Buy - NOT notorious for good customer service. In fact, it's usually near impossible to get anyone to pay attention to you, let alone help you. It wasn't until I was back in my car and looked in the rearview mirror and realized that I looked sick (but not sickly)....and it really explained this unusual encounter in the store.

Then the other day, I was at a park...lots of people, there was a band playing, etc. I was walking to where my blanket was set up - and this woman came up to me. She was wearing a bandana on her head - had VERY short hair. She had come up to ask me if I had had chemo. We then stood and talked for quite a bit...she was very nice. I commented on how I liked her bandana (a sage color with peace signs all over it)....and after we parted, I had sent my friend over to ask her where she got it from. Well, a little later - this woman came up to me and gave me the bandana!! It was SO sweet...and a moment I will surely not forget any time soon.

Tonight I was out shopping and the people in the store were also tripping over themselves to help me! Again, not in the way salespeople usually push to help (let alone in stores where salespeople don't ever push to help).

I don't like that I look sick - but it is so amazing since often with MS - you don't look sick and so no one might know that you were sick or suffering. It's not like I wore a badge that said, "I have MS and feel like $h!t"...but that was the truth of the matter. Now that it's more overt - it is just different and a little weird. Of course, most people just think I have cancer. (almost wish I did over MS)

Anyhow, not sure why I posted this...just wanted to share the experiences I guess.

~Keri

I'm glad people are treating you so nicely! So sorry for the reason tho.

As a cancer survivor may I tell you MS seems to be a walk in the park in comparison and my cancer was caught very, very early.

Oh yeah, Keri, I get treated much better looking disabled (I use a can or a rollator). I had a similar incident at Best Buy a few days ago :). Just a suggestion for you: be careful about tossing the cancer reference around so casually. My mom just died from cancer and many of has have first hand experience with it. MS is walk in the park compared to cancer. JMO.

Looking Good
 

It just proves that some people are ill with symptoms other people can not see. "But you look so good!" syndrome. We really should not have to prove anything. I notice when I tell people is have MS, they hesitate and I see either sympathy, fear, or ignorance in their eyes.
At least in the long run, people were good to you when they knew you were ill....... you found that people are basically good.:winky:

I have to disagree, based on my personal experience with both. Admittedly, my cancer was fairly easily treated, and I lived to tell about it.

My MS has been pure HE!! at times, and there have been more then a few times that I wished something (that they could at least treat with morphine, so I'd be incoherant) would just "take me". :eek:

I went into a laser clinic yesterday to take to this guy (who used to be a doctor) about using laser to quit smoking. He said, "to help motivate you, think of the health aspects, blah, blah, blah". I turned to him and said, "It is the $$ that will motivate me personally, because I would much rather die from cancer then die a slow agonizing death from MS". He shook his head in agreement. :(

Not everyone with cancer has a VERY hard time, and certainly not everyone with MS does either. I think our perspective on this though, is all relative to our personal experiences with the diseases . . . .

Very good point!

Keri, hopefully after this is over, you won't be "disabled" enough to need much empathy . . . cause you will look and FEEL good.

Cherie

I've lost two close friends to cancer and one to complications of MS. They were equally horrid to my friends and to me.

Yep, I've noticed the difference during especially bad times. I also notice a big difference in reactions between using my manual wheelchair and my scooter. I think the manual chair looks more "clinical" to people where the scooter looks "fun". For the record, I hate needing both of them.

I've actually had people ask me if I really "need that thing" because I don't pout 24/7 and a lot of the time I'm actually in a pretty good mood.

A lot of times I have had store personnel offer a lot of help to me and I agree, people are basically good. But if you saw me in a lawn chair at a campfire, you'd never know or suspect a thing until it was time to recycle the beer. ;)

I also have lost a few friends to cancer, it can get pretty bad, Not sure what it matters all of them have rather narrow outcomes.

I am still mobile by cane, I do see a bit more politeness, but in the same breath, for some odd reason my cane is a target of feet, carts and these things called humans, so I have noticed a diff, just not an extreme one. and your right AMN its a weird illness, such hassles and problems yet to the naked eye sometimes its hard to see MS

Like Sassy said I am sorry for the reason, but am glad they are treating you nicer

praying the HiCy treatment works wonders for you

First - I'm sorry if the cancer comment upset/offended anyone. I don't toss that around casually at all - and sorry if it came across that way; definitely not my intent.

My mother died of cancer when I was 19. She got sick when I was barely 10 and struggled for 10 years. I know firsthand how horrendous it can be.

Sadly, I also know firsthand how horrendous MS can be for SOME people. I am/was one of those people. On my best day, I probably felt no better and wasn't doing any better than she was on her worst day. If anything, it is worse because I declined so rapidly (from a zero disability to nearly a 6 in less than six months). Her decline took many years - and similar to MS, it was a rollercoaster ride. Short periods of remission - never more than a year - during that 10 year horror story.

What is probably most interesting is that my entire life I have been convinced I will get cancer (every female on my mom's side of the family has had, has, or has died from cancer...and it's up to my generation now. :( However, after seeing my mom's horrific battle - I always swore I would never NEVER do chemotherapy! :eek: I always said I wanted quality of life vs. quantity. Yeah, my mom had 10 years - but they were G-d awful. Yet - here I am - 32 years old (about same age my mom was when she was diagnosed with cancer)...and I practically begged to receive this chemo treatment! Strange, huh?

I guess I got my fighting spirit from my mom - she traveled the country to receive treatment - and fought with everything and anything. Sometimes I wish she hadn't fought so hard so that we could've enjoyed some of her short time here in my life. In many ways, I lost her when I was 10.

Anyhow, cancer and MS are individual battles.

Some people with cancer don't get very sick. Others lose their lives to it.

Some people with MS can function fine with very little disability - and others - we do end up in wheelchairs and some do die from MS. That is just a fact. Thing is - these days - so many people are doing so much better - that we really do comment on how MS doesn't have to be crippling - and it's true, for many people it isn't. And for the unfortunate ones, myself included, that isn't the case - we decline rapidly and lose nearly everything. Same thing is true of cancer these days. The treatments are better and better for some and not for others.

Since getting sick - I have said that at least with cancer - there is somewhat of a known path - I know what to expect....they could "Stage" it and tell me things - now, that doesn't mean I will follow that path - but at least it's an outline. With this MS garbage (that's my G-rated word to describe MS) - there's nothing, no standards, no rules, nothing. Zip. You're on your own.

Anyhow, again, it's so individual.

~Keri

Sorry for ripping into you, Keri, about th cancer reference :o. I'm still emotionally 'raw' about my mom. I've had a really rough road with MS since my dx last May. I can't walk without aid anymore, can't work due to cog issuess, pain and fatigue. But, in my defense, I wouldn't ever trade this disease for cancer. I'm so happy that the HiCy is working for you :).

Maybe a bit OT
 

I had a friend who waited his whole life to contract Huntingtons Disease (always fatal) cause it ran in his family and it is definatley hereditary. He never got the genetic test for the disease out of fear of knowing.....He got a vasectomy so he was sure not to pass the dreaded disease on to his children. He remained childless.
Anyway he lived his life like everyday was his last but abused alcohol and drugs due to the unknown fear of getting the Huntingtons.

Well at the age of 47 he died of mouth cancer that spread to his brain.
I think he unconciously tortured himself and in the end......it wasn't even the Huntingtons that got him. Could have just as easily been run over by a bus.
<<<<<sigh>>>> Just had to share