[SallyC]

If anyone needs to biotch, complain, whine? This is your thread.

I'll start....Although I have lived with this putrid, hateful, mean
disease for 50 yrs..DX for 40 yrs., and am still going strong,
I don't want to miss an opportunity, to tell the world what I
really think!!

Especially now, that MS has taken away the fun of being an active
Grandma.....grumble.....I try real hard to be a part of their lives,
both for their benefit and for my DD's.

I hate this Disease and all chronic illnesses that take us away
from our loved ones and friends, places where we want to be
and places we need to be.

Your turn....

[SallyC]

Nobody wants to whine with me?

[lilmama]

I haven't been diagnosed with ms yet but.....I hate that there isn't one single test to give you a yes you have ms or no! I hate being a human ginea pig and pin cushion. I absolutely hate needles since I was a kid. I feel that most of the run around game most drs play is only about money. Ok I am done for now lol

[tkrik]

Originally Posted by SallyC

Nobody wants to whine with me?

How much time do you have? How many words can one post be? Is there a limit?

I get what you are saying Sally! It's so hard for me to not be able to do the things I used to do and/or at the speed I used to do them. Since being dx, I have seen and decline in my abilities and it's so hard and frustrating. My mind still wants to go, go, go but my body says no, no, no. The two are just not coordinated.

I know I've said this before but, I miss working. I miss doing fun and exciting things as well as the mundane things at work. I miss the social interactions that one gets when they're working. I miss the income and get so tired of being so strapped financially. I miss get dressed up for work everyday.

Passing the whine and cheese . . .

[Blessings2You]

I'm with tkrik--how much time do you have?

MOST of the time I really try to focus on the positive and not dwell on the downside. That said--I think it's a good idea to have a thread like this once in a while where we can come and dump the trash. Sometimes you just HAVE to dump it! There are days when it all builds up and you feel like you're going to implode.

And my family suffers enough from what I DO share with them. Not because they're sick of it, but because there's nothing more they can do than what they're already doing. They already feel bad. Reminding them every single day how lousy I feel isn't helpful.

What my family/friends do tend to forget is that it's not always "just" the MS. Like most of you, especially those of a certain age, I have other stuff going on that's often just as debilitating as the MS. Nothing life-threatening, just more stuff piled on to increase my whining misery.

Like MS isn't enough without arthritis, IBS, chronic infection/rash, sore toes, anxiety, and all the other complaints du jour.

My body doesn't want to do anything, and my brain doesn't either. I'm doing the best I can coping with the ever-lengthening list of things I'll never do, or never do again. I'm trying to adjust to changing the way I do everything (cook, clean, run errands) and then, just when I get used to the "new" way, having to change again.

Currently my whine is that I've been dealing with several weeks of pain. Not blinding, excruciating pain but day after day of having it hurt to sit, hurt to stand, hurt to lie down--never able to find a pain-free position for more than a few minutes--it's getting really old. I'm thankful that I CAN find a few minutes of relative comfort, but it sure is whine-inducing.

[Debbie D]

I hate the uncertainty...of not knowing what is going on internally, and what will come next.
I am angry-I am withdrawing from talking about how I feel, what is going on both physically and emotionally. I just feel like I want to go away, be by myself.
Now that I'm off of Copaxone, I don't even believe I have MS, so i just try to ignore the stupid symptoms...but they keep tapping at the window, bothering me. Grrr.

So sorry, Sal, for what MS has taken from you. We love ya...

[doydie]

I hate having 'MS days'. My body tricks me into thinking that my new normal is going to work after all. I can do a lot of things I want to, I have found I can exercise and enjoy it and even park way out in the parking lot on a cool evening and walk into a store instead of fighting for one of those 6 handicap spaces. Then I have an 'MS day' and I'm knocked on my feet and can't do anything at all that day and most of the next. No, I can't do a lot of the things I used to but I can still drive, enjoy my grand kids, go on vacation with a scooter. I'm not sure I would enjoy nursing with what the medical field has become.

[GladysD]

I hate the unpredictability of the whole illness. I hate worrying, that as I go into my 40's that I am going to reach menopause and I have to not just deal with that aspect as just a woman, but the wondering!! What is menopause and MS going to do to me!?

I hate worrying, that if I get a lousy cold, is my body going to want to just lay around in bed all damn day! I hate that colds settle in my eyeballs, and I have a little blurred spot to deal with!

I hate, having a hot day, and the moment the AC goes on in my home, I am ready to just take a nap! Sorry kids, mommy isn't feeling good right now.

[Lynn]

Ya know what is completely doing my head in? Figuratively speaking of course. Because I am on Ty, I have to have an MRI every 6 months. That's fine. I had a brain aneurysm clipped in 2004, and have had numerous MRI's on the local 1.5 tesla machine since. That's fine.

Problem is, now the local radiology place has upgraded their MRI machine to a 3 Tesla - and my Neurosurgeon's office doesn't keep records that far back, to check whether my clip can take that much magnetism. That's not fine.

Radiologist says 'can't take the risk - out come if we get it wrong is death'. Once again, not fine - although I applaud his honesty and duty-of-care (he was the one who found the aneurysm as an incidental finding nine years ago - lovely guy).

They can do it on the old machine for the time being, but what happens when that is superseded?

Face it. I am only 44, and technology is moving FAST - what happens when the machines get too big - and how long will that be - five minutes at this rate???

In the meantime, I am scouring the 'dar-chives' of my filing cabinet, trying to find something that will tell me what I have in my head. I am sure I remember my doc telling me that I was safe up to 4-5 Tesla - I just have to prove it.

[Juniebear]

Originally Posted by lilmama

I haven't been diagnosed with ms yet but.....I hate that there isn't one single test to give you a yes you have ms or no! I hate being a human ginea pig and pin cushion. I absolutely hate needles since I was a kid. I feel that most of the run around game most drs play is only about money. Ok I am done for now lol

I'm with you there! I am so sick to death of being passed around with no answers. My PCP says if he could diagnose me I would be on medication already. The first neurologist basically told me I was crazy and overreacting. I am not!! If anything I let symptoms and such go too long. Which is probably why I've gotten so bad without a diagnosis. So, now some days I'm stubbling, falling down, and slurring like a drunk sailor... but no explanation as to why other than some crappy neuro telling me I "Had a stomach bug and got a little neurotic after googling symptoms".

I also hate that it takes so LONG to get into a neurologist for an appointment! I have an appointment with a new neuro the end of July, but have been waiting over 2 months for that one. I don't understand it really... it isn't like people go to a neuro for things that are minor or can just 'wait and see'.

REALLY hoping this next appointment is The One and I get some help.

Also, hate that I have really great days where I feel "normal" again and start to think maybe I am crazy or maybe it's over then wake up the next morning and it's "haha ... Iiiii'mmmmm bbbbaaaaccckk!".