On a personal note...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

On a personal note...

Postby Hope66 » Mon Jun 28, 2010 5:22 pm

Let me first say that I have a great family. I love them all and I know they love me.

Nonetheless I am dismayed at the fact that they pay little attention to a) my MS (which do date is largely invisible) and b) that unless I directly press them, they pretty much avoid any MS discussion including any CCSVI info which I freely share on FB (and which they are privy to).

Sometimes I just want to send a message to them saying, "Helloooo...anyone listening???" This is a huge big deal to me and my future and none of you appear to be paying any attention to the gravity of this information and my MS diagnosis."

Really, I think that if any of them were facing a similiar fate/obstacle/issue, I would like to think that I would be there asap, asking what I could do to help? To be fair, my Mom did manage to get me a referral to Dr McD, when I couldn't get one through my MS Clinic or my GP and that was awesome. And I do appreciate that and let her know how much I appreciated her help!

But still...there is no inquiry, no "how's it going this week" no.... well anything else. I'm doing well...and I'm not looking for pity or sympathy or anything ...just maybe some support through this arduous process to get tested and maybe even treated.

Anyone in a similiar situation???

Perplexed,
Hope
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Postby magoo » Mon Jun 28, 2010 5:37 pm

<HUGS> I've been there. Over the years I have come to understand that it is uncomfortable for even family to talk about such a devistating diagnosis. Don't worry or be sad. Any of them would be there if you asked I'm sure. It's a weird thing living in this world of disease. I don't know how old you are, but especially if you are younger, it is a hard disease to talk about. There has been a lot of negative and not much positive until now. If you need them....just ask. I'm sure you'll be pleasantly surprised. Hang in there:)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby bmk1234 » Mon Jun 28, 2010 8:46 pm

What you are experiencing is not unusual. Most of my family has MS and it's never talked about. My wife and kids don't bring it up. I think it scares them to talk about it.
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Postby Cece » Mon Jun 28, 2010 10:05 pm

My husband and kids are part of my day-to-day life, they get it.

My parents, on the other hand, don't accept or realise that I have bad days. So I forgive them for that, I've tried to let them know, for whatever reason it doesn't take. I just have to watch more carefully that when they're making plans they don't expect more from me than is possible.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby BadCopy » Mon Jun 28, 2010 10:29 pm

I have MS and I am not asked often how I am doing etc. Then I realized that family members could see the developing limp, arm and eye jerk, leg spasm, loss of energy. In my case they didn't want to make it worse than it was. Why remind me of what the disease was slowly doing to me. They were trying to be kind. They also were unsure of how to aproach me to ask if I wanted help or if I was developing new problems. I am very independent and always want to fix my own problems. I don't want pitty. My wife,knowing these things about me, was overly cautious not to give the impression that I needed help.

About the CCSVI treatment ? I asked my wife why she wasn't as gung ho as I. She told me that she didn't want to get too excited about it and then have no results from the treatment. One of us has to be ready for news like that. And as level headed and prepared for anything, as I am always reminded, it will be hard to hear that I am 1 of the 5% that dose not have CCSVI.

I think everyone has a different situation but those are some things to consider. Some times they are watching out for you more than you think.
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Postby ozarkcanoer » Tue Jun 29, 2010 6:40 am

Hope,

Since many MS symptoms are invisible I think it is difficult for our family and friends to really understand. If you look good everyone thinks you are good. Before I had MS I was clueless about other people's invisible illnesses. You know you can always come here to talk. Another good MS board is MSWORLD. They aren't big on CCSVI over there but there are a good group of people and message boards and a chat room. I met many wonderful friends on MSWORLD before discovering TIMS. I met one very wonderful friend from MSWORLD when I went to Buffalo for my CCSVI testing. Sharing with other MSers is good for you !

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Postby thornyrose76 » Tue Jun 29, 2010 1:53 pm

I might as well not have a family, and on this
CCSVI all my mother can say is that "it will never make you walk again," or "you'll have a huge bill and nothing to show for it." The response is always dismissive and negative. That's what I'm dealing with. I use to really believe I wasn't handling my illness well. I now realize that those feeling are absurd and that a lot of people with MS are confronted with similiar issues via "loved ones ."
Why is that?
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Postby Daisy3 » Tue Jun 29, 2010 3:15 pm

thornyrose76 wrote:I might as well not have a family, and on this
CCSVI all my mother can say is that "it will never make you walk again," or "you'll have a huge bill and nothing to show for it." The response is always dismissive and negative. That's what I'm dealing with. I use to really believe I wasn't handling my illness well. I now realize that those feeling are absurd and that a lot of people with MS are confronted with similiar issues via "loved ones ."
Why is that?


It's funny you say that. I feel like I am forcing my hubby to think about CCSVI and other innovative treatments when he would sooner forget that he has this thing
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Thanks all!

Postby Hope66 » Tue Jun 29, 2010 4:16 pm

Thanks so very much for all your kind and thoughful replies. I really appreciate it.

Magoo...yes, you're right, they would be there if I asked in a heartbeat. BTW, I'm 44, single, never married, no kids (though I've had a few long term relationships)...oh, and my name IRL is Rhonda too! And I think you're right, but it's easy to forget that it's hard for people who care about you to talk about such a devastating dx.

bmk1234...to further the above, yes, I think you're right, MS scares them and quite likely they don't know what to say or how to say it. As PwMS, we have been forced to deal with it, up close and personal...

Cece...yes, so true... I sometimes feel the need to "manage expectations" of my participation in events.

Bad Copy...Yes...I sometimes overhear little snippets that make me think that they really are paying attention, they just don't want to make a "big deal of it." I too wonder "what if" I don''t have CCSVI...but it's more a part of my denial fantasy where it turns out that it was only B12 deficiency or Lyme Disease....it aint' just a river ya know :)

ozarkcanoer...I totally agree..."I look so good!" And really I feel good too. Aside from the dastardly Avonex, I really have had an easy go of it so far (knocking on wood as I say that). I too had absolutely no idea what people with invisible diseases went through prior to my dx. PS...do you really canoe in the Ozarks? I bet it's incredible!

thornyrose...I'm so sorry that your mother is not supportive in a way you need her to be. From other posts you've made (the "loan" post in particular), it sounds as though she might be caught between wanting to supporting her daughter and concern about her inability to do so financially? I suppose what I'm saying is that she might be feeling guilty about your situation and her inability to assist given her limited resources?

Daisy...that's funny....but, as I said above...it ain't just a river ;)

Thanks so much to you all for taking the time to respond to my post. It just occassionally hits me that it feels like those closest to me aren't paying attention to the "hugeness" of the potential of CCSVI for me. Last night it hit me and rather than post a snarky comment on FB, I chose to post here. I'm glad I did.

peace out,
Hope (or since I outed myself already, Rhonda)
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Postby thornyrose76 » Wed Jun 30, 2010 2:05 pm

Yes, you hit the nail on the head! I do agree , but it's frustrating for me bc Im in rough shape and want this treatment so badly. It's unfortunate that I'm Canadian.
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Postby 1eye » Wed Jun 30, 2010 2:46 pm

What about the computer? I still have good friends but my *family* hate my computer because they are jealous of how much time I have to spend talking to it. I explained to wife and GP that my brain ain't normal, I can't switch contexts fast enough to respond to a lot of things they say and do. From working with computers I know that too many context switches sucks up so much bus bandwidth that NO task gets enough time, and the whole system fails. I take so long to answer a simple question that they give up before I even understand it. Sorry, I was watching the weather channel. Hey, where'd they go?

Telephone calls still work because of habit. But when I'm "on the computer" I lose friends, family, mailmen, you name it. What can I do?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Blaze » Thu Jul 01, 2010 8:00 am

I understand because I've been there. For the first six years after my diagnosis in 1984, my mother simply could not deal with my M.S. We had our biggest mother-daughter crisis six years later when I was in the hospital and she chose to completely ignore that fact.

Since then, she's gotten a lot better (It only took 20+ years!) and I've come to appreciate that how hard it is for Mom to see her daughter with a serious medical condition. Whether your mother says it or not, she's hurting for you (and may also be in her own state of denial, as my mother was).

Now that I'm almost 60 and she's 87, I think it's even harder for my mother to see me having far more difficulty walking than she does and have far less energy than she does. When I visit her or she visits me, she wears me out. She's come to accept my MS, but there are still many things I don't tell her because I know it would upset her and cause her to worry.

Try to appreciate that your mother loves you and hates seeing you with medical problems. She's also of a different generation that handled health issues very differently and didn't talk about them as openly.

Hope it helps a bit to know you're not alone.
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Postby elyse_peace » Thu Jul 01, 2010 10:38 am

Hope-
Sorry. :( I guess it's just what some families do.
My dad was the only one to visit me when I became too disabled to go to go to the family home. He passed away 2 yrs. ago. Mom moved across the country to live with my older brother. Younger brother moved south. I don't even know if I'll ever see any of them again. For sure I won't see Mom. None of them call.
Oh well.
You are not alone. We here at the site care.
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