Well as of today I am out on FMLA from work. Though I do not yet know if my Neuro will sign off on the papers, but, as far as my boss is concerned I'm out on it. I see my Neuro Friday and he is out of town until then, so here's hoping he'll see that I can barely move so I can't drive myself to work nor have the energy to work.
He'll want me to do IV Steroids though and I won't do them. I think I need rest, supplements and I am going to start the Swank Diet. And investigate Tysabri etc... But no more Roids. Not yet.
So I blew up at my family (Dad and 2 sisters) via email because it has been 12 days since the start of this Flare Up and not a single one of them has contacted me via phone/text/email to see how i was doing. My blogger friends and in-laws offered me more support than anyone else has thus far. I realize I am 850 miles away but we communicate via phone, email and text other times so why not now when I really need the support?! I called my dad on Sunday as it was his birthday and told him I was going to have to go out on FMLA and he said to me " What about your job? You Don't want to loose it."... my reply via email was - "who gives a BLANK about my job, I can't walk, swallow or have bladder control".
Now granted because of these things I am a bit high strung, but, give me a break. Your daughter makes it clear how she is suffering and your response is "What about your job?". Really?
Anyway, I told them how I felt and told them not to bother even replying to my email that I'm alone in this and I'll just remain that way. And when it comes to my family I am alone. When it comes to my friends I can be just as alone. Because the only people who truly understand this disease and the consequences of it are those who have it. I feel blessed to have made such good friends who have MS and do understand, without you, I'm not sure I could make it through. I don't know how my mom ever did it before there were computers and ways to keep up with all the support and knowledge in the MS Online Community. I'm Thankful.
5 comments:
That's when my father usually asks if I saw the ballgame the night before? They don't know what to do, but it is frustrating. I was diagnosed 23 years ago and still haven't had a real talk about it with my father or either sibling.
Andy
Andy: The difference with my family is that we all grew up with MS as my mother had it. She passed at age 46. So they know exactly what it is and yet they offer no support. Go figure.
I called my family prior to going on steroids and no response. I like you have had to rely on MSfriends.Thanks for being there for me. It means alot. s
lanette, this has to be the worst feeling in the world, & i'm sending you a big onine [hug]! and, no, the people you'd expect to understand don't, and that hurts worse than anything. but we are all here for you, okay??
I'm so sorry that I was gone while you were feeling this way. I can tell you that my family is the same way with me. No support...ever. After I had part of my lung removed, major surgery, my parents were going to come over to "help me" because my husband was in PA and I was in VA. (Hubby had used up all his vacation.) They would only come before it got dark out and God forbid I had asked on a day when there was Bingo going on. I ended up having to send my then 5 year old up to PA to a daycare center for 2 weeks and was by myself.
I know what it's like to feel like you're alone in your battle and when your family is supposed to step up they run the other way. I firmly believe that's why God has put other people in your life that will step up when others are inadequate to do so. I hope you'll continue to lean on those who will step up.
Love, your friend,
Sandy
(PS. Do you have my "real" email address?)
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