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Saying Good Bye and Thanks

Feb 04, 2011 - 23 comments

I guess it's time for me to leave this forum. I don't belong here anymore as I am now totally classified as a permanent limbo lander. There is no forum for that and there is no advice I can give anyone anymore as I have myself have nowhere left to go. Even for limbo landers looking, I have nothing left to offer.

The following is what has recently happened that has led me to this decision.

I got a call finally a month later (after my last voice issue) from my family doc's office and the nurse told me that no new neuro will take me on. They say that there is nothing more they can do for me or test me for and for me to go back to the other neuro who sent me to the MS clinic. She told me unless I become paralyzed or something similar in severity, that would be the only way they would take me on.

The problem with going back to the neuro I had is that he no longer wants to see me either as he was sure I had MS and after the MS clinic said no, he basically told me that I'm not that bad off as I'm still walking so not to worry about things. He's also the one that told my family doc after a bad flare that I needed a psyche eval and not treatment.

I did go for the eval just to get that off the table and guess what? There is nothing psychologically wrong with me and nothing that would be causing these symptoms. Go figure.

Anyways, my family doc has gone from telling me when I first saw him a little over a year ago that he would do anything and everything to help me, has basically written me off as well and says there is nothing more he can do. I was the one who lately had to push for him to see if he could find someone to see me and when asking him about seeing an ENT for my recent voice issues said it wasn't worth it as they wouldn't find anything anyways. So I am now left in the dark and nowhere left to go as here in Canada, to see anyone, you need your family doc to refer you.

I can't thank everyone enough for these last few years supporting me and helping me through some scary days. This is an incredible place and I will always think of you as my second family but it's time for me to say goodbye. I wish you all well and pray that cure for MS is just around the corner. Through you all, I have learned so much about this disease and have learned how silent symptoms can be just as debilitating as the visual ones.

I send you all my love and only wish happiness and good health for you.

Moki



The  Butt of one Big Cosmic Joke

Sep 18, 2010 - 3 comments

I always figured that Murphy's Law was real. He's been my childhood friend and has stuck with me through all the years. It was always if anything could go wrong it would with me. But now I think Murphy was in cahoots with the Cosmos and I am the butt of their great big joke.

My health issues are one example, no answers and always neuros that can't or won't look past the nose on their faces. I can't get a neuro who would by any means say, hey, I know there is something wrong and I'll keep looking until I find out. No, I get the ones who say, ya, we know there is something wrong and good luck with that. I'm told how good they are and then I go and get my hopes up, then get them dashed.

It isn't just my health that this is occurring it's my everyday life. Like I said before, things have been going on since I was a kid. I'm one of those people in the grocery line where 3 new tellers open up and you get to choose which line you think will be the quickest, yup, I always pick the slowest.

Yet, I try to stay positive, I try to keep thinking that this time, things will work out but nope, nothing yet. I worked most of the summer for the first time in 5 years as I needed to and then thought I would only be off work for a month but now it looks like I may no longer have a job. I need to start looking but who is going to hire me with my health issues? So work when I never have before and now maybe no job.

My reason for now thinking this is one big Cosmic joke is I got a call from my Dad that I could get a tank of free oil from someone who is putting in a new heating system and needs to get the tank and oil out,if I could find a way to get it. Now I'm thinking WOW, this is great. I'm all geared up and said yes, tell them I'll find a way. I found someone who had an empty tank with a pump and he said he would gladly help. So far sounds good right?

Well, Daddy calls me back and says that someone else beat me to it. Apparently Daddy knew for a while and forgot to tell me. So I'm wondering, why in the blazes did I find out about getting free oil, only to have the chance taken away? Answer: Cosmic Joke!!

I figure even Murphy can't be this consistent all the time without some help. So that's my answer. Here I was wondering what I was doing wrong all those years only to realize that on some higher level, someone has a really warped sense of humor.

So now that I've figured it all out, I will now always live by the rule, if it's something good coming my way, DUCK, because the crap is sure to follow.


Gone are days of........

Jul 10, 2009 - 2 comments

Ah the joys of limbo land. If it were just little pain in the butt things, I wouldn't be so set on finding out what is wrong with me. But..... through the course of the last 4 years things have changed a lot for me. The years before that were come and go things and I guess that is why I never really thought much of it. Sort of like well it went away so I'm okay.

Now though, gone are the days of feeling good. Tired, oy, daily. For the life of me, I honestly can't remember when the last time I woke up in the morning feeling great and ready to start the day. Somewhere, somehow, someone turned me in a zombie. Yup that's me, the walking dead. lol Where a couple of years ago I was still getting good days without the fatigue, now it's a daily thing. Sure there are days where it's not so bad but it is always there, lurking.

I've been looking for my oomph high and low and alas it cannot be found. So if by chance someone is reading this, please if you find my oomph, return it. It is sorely missed.

Gone are the days of no spasticity. For the most part, there is no pain other than the days when the spasms kick in but the one upper thigh is always spastic so I get to walk with a gimp. Gimpy, yup that's me.

Gone are the days of freedom, the freedom to choose what I want to do and when. Now I have to factor in the weather, how I'm feeling that day, wait on decisions to see how I'm going to be feeling etc. It's so amazing how I took that for granted when I felt good. Now I would give anything to be able to have the freedom to choose again. No longer can I just go for a walk on my own as I never know what my legs are going to be up to and if I can't make it home again then I have to make sure hubby is around to come get me. Wouldn't I look so cute stuck in the bush because I couldn't make it back.

What I find so frustrating is that there is no name for what ails me. Sure, the suspicion is there but no diagnosis yet. Gone are the days of going to the doc saying this is what my symptoms are and him saying oh, this is what you have. Ah the good old days when everything made sense.

Why did I write this? Well, I'm not quite sure myself. I think partly because I have an upcoming MS appointment with another new neuro and am worried that once again, I will remain in limbo land. Hmmm, apparently gone are the days of optimism. lol The other is that I've been feeling this way for quite some time and it has gotten me down. I thought perhaps writing it and getting it out might make me feel better. Hmmm maybe the optimism isn't quite gone yet.

Then again, gone are the days.........

Farewell Rustypup, have fun in doggy heaven.

May 25, 2009 - 8 comments

It's with a heavy heart that I write my farewell to you Rusty. I am happy that you are now in a place where you can once again run and frolic.

You were my friend and confident and although I know that some may think that you were just a dog, you were so much more. You picked me up with your silly antics when I was down, you walked beside me when my legs were wonky, you let me whine and complain and never judged me. You always loved me unconditionally and I loved you.

You lived a good 14 years and I am so happy that you were around for so long. You were family and I am ever so grateful that you came into our lives. The good Lord knows we were so lucky to have you.

I'm looking outside right now expecting to see you but know that will not be anymore. I shall miss you my friend.