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Unread 12-17-2012, 08:17 PM   #1
sugrkiss
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Default Tell me it's ok.

Cut to the chase... I'm in a downward spiral. Getting weaker and weaker each month. Obviously my treatments aren't doing their job adaquately anymore. But u all know how it is... Think this virus, or that stress is setting u off and waiting to talk to your Nuero u till your sure its really the mg acting up. Anyway I just need to hear for others who are there or have been there.
I can't think straight lately so I'm not paying bills (putting off my 2x monthly budgeting and pay bill days) or making appointments or all the little things moms do that nobody notices. Cooking and cleaning has become sporadic and barely manageable. Just picking the kids up from school and doing homework is enough to send me to bed. Somedays, like today, getting out of bed and feeding myself is a chore. I'm here for my kids, lay in bed and watch t. Or hang out on the couch, break up fights and wash dishes and clothes. This is probably the worst month in a long time and I feel so guilty. Theres no one to ask for help from and my husband works a lot and he works evening shifts so he's gone by the time the kids get out of school. Anybody been here? Anybody tell me my kids won't feel mistreated when they look back on their childhood? B4 Mg I was a very good attentive mom, cooking and baking and cleaning spotlessly almost with OCD like attentiveness, so this change even after 3 years is so hard.
Thanks fellow MGERS
Jess
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Unread 12-17-2012, 09:06 PM   #2
AnnieB3
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Jess, I'm so sorry things aren't going well for you. MG can be a very isolating disease. And what we really need is lots of help from others, especially when things get worse. There really isn't anyone who can help? Can you contact a social worker to see what they can do?

My Dad was sick my whole life. He had rheumatic fever in the Navy, which lead to a blown aortic valve (he didn't get a new one until decades later), high BP and kidney failure. I didn't know the extent of it until my 30's. It hardly mattered. Yes, he had to take a nap every single afternoon and he couldn't do as many physical things as most people do. But he had a super strong presence and I don't feel one little bit cheated!!! He was ALIVE. And I think we can all agree that, after last Friday's shooting, that's all that matters.

Your kids are kids. They still have a lot to learn about life and people. What they can learn from this is that it's not what is WRONG with a person that matters but what is right. They could learn to be more tolerant and helpful. When they are older, I will bet you that they'll be grateful you were there - no matter what condition you're in. If they were the ones who had MG and you didn't, would you love them any less? Of course not.

Screw the guilt. You are who you are. Forgive MG and yourself.

Sure, it would be great if we could all do what we used to. There are days like today when I literally wake up, unable to move or breathe well, and sort of scream, "I hate this F'ing disease!" Then I get over it and move on. I will always be sad for what I can't do anymore. So I focus on what I can still do.

Getting weaker isn't okay, though I'm in the same boat. I would still encourage you to find out if there are other things making you worse (vitamin deficiencies, thyroid, etc.). Have you seen your primary physician lately? Your neuro?

The dust that was under my bed last month is still there. It sucks but I won't end up in the hospital just so the spiders won't have a place to live. And I'm not expecting the Queen to pop by anytime soon. If you can try to afford a cleaner a couple of times a year, that really helps. If nothing else, it brings someone into your life to help and talk to.

So, it is okay. It will continue to be okay. Whether you're hugging your kids or yelling at them - which you shouldn't do with MG - you're still there for them. You matter. Don't ever forget that you matter!

Are there things that you love to do? A hobby or just listening to music? Don't forget to recharge your soul batteries every day while you cater to everyone else's. I hope things get better for you.

Annie
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Unread 12-17-2012, 11:15 PM   #3
sugrkiss
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Thank you Annie! Your words mean more to me than I can express.
<3
Jess
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Unread 12-18-2012, 04:06 AM   #4
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Annie...... those are probably the most meaningful, beautiful words I ever read in my whole life about how parents matter to their children.
Thanks! They sense it! Our good intentions and love for them are what counts the most when they fall asleep at night Anacrusis

Jess....... these are some energy hugs for you...
Hope the direction of your symptoms changes in the very near future and in the meanwhile you find different ways to continue being the great Mom you already are .... Anacrusis
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Unread 12-18-2012, 09:19 AM   #5
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I will post another side of it...from a child with a mom with MG.

My daughter is 15, I have MG for 14 years. You do the math....

She has seen me every single day of this journey. At age 4, she alerted me to the fact that I "needed to lie down" before I even knew something was really wrong. By the afternoon, I was being airlifted to a hospital in the city because of the risk of respiratory failure.

She has seen me at school activities, with crossed eyes and slurred speech. She has seen me drive with one eye covered, and not be able to drive her to certain things, especially after dark. She's grown up seeing me at the computer, with an IV every few weeks (IVIG). She has seen me go into the hospital for port stuff and finally, she saw me go through the reboot, the hairloss, the "sicker than I've ever been."

She's also seen the improvements. All this while she was going from baby to a young lady.

She's a teen now, and not without some scars from all of this. She seems to operate in a "assume the worst outcome" mentality about illness and hard times. She now tells me that she was scared that I was going to die when she was small. She noticed how other people reacted to me at school stuff, how they avoided me because they thought I was intoxicated. It all hurt.

Does she think I was a bad mom. No, not according to her. She knows that I will be for her NO MATTER WHAT....because I was, because I am. Still, she looks at life through different eyes than those of her peers. She does not have good memories of the MG, as is the same for me.

So yes, this is very likely affecting your children. I hope you will be in touch with your doctor, to discuss things that might help. I also hope that you can somehow find some help for around the house. I was never able to do that myself, and know how hard it is. In retrospect, though, I wish I'd tried harder to get help.

Try not to feel guilty, as this isn't your fault. Just keep trying your best, even if "your best" is having a movie-thon two days a week during the holidays. Explain to your kids at their level of understanding so they won't be scared. My daughter used to say "Stupid MG!" when I'd explain why I couldn't do something right then. She got it, she loves me...she knows MG and me are two different things.

Good luck.

ps--Just the fact that you're worrying about this proves you are a GREAT mom!
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Unread 12-18-2012, 03:40 PM   #6
alice md
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Quote:
Anybody tell me my kids won't feel mistreated when they look back on their childhood?
Not only MG, but many other things make us be there less with our kids.

In my case, it was medicine.

From a very early age my sons knew that there are days in which mom is not going to be home at night and will come back the next day like a zombie after working for 24 hours with very little rest.

They knew that dinner may be cut short because I have to talk on the phone or even rush to the hospital to see a sick patient.

I learned quite early on that feeling guilty and trying to fill in for the times I was not there, was the worst thing I could do.

Instead, I had times which were just for them. I also had special times for each of them. I also knew that discipline was not less important than kisses and hugs and even though I was tempted to skip discipline and just be nice and have fun when I had so little time with them, I knew I will cause them much more harm.

Yet, I had no doubt that they are going to hate my work as it took their mom away from them.

I was more than astonished when my older son told me that he wants to study medicine. I told him that I was sure he would hate my profession.

His answer was-mom, I knew how much you love your work and how important it is for you, but you always made me feel that I am more important for you.

What I am trying to say is that be the mother you can when you can.

I became ill when my sons were 13 and 18, so they didn't physically need me as much any more, but they still need me to be their mother. The major motivation for me to overcome the significant hardships of this illness was to be a good example for them.

When I was extremely ill and nearly bed-ridden they took care of me. They still help me and do things that I need whenever they can. They made me want to live and fight this. At the same time they continued with their own life and plans, just like I did when taking care of them.

No one's childhood is perfect, but I believe that having a loving and caring mother who has a presence (even if she is physically not there, or physically limited) is more important than cakes or clean laundry.

If you can afford having someone to help with the house chores, or even pick up the kids from school on less good days it will make life easier.
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Unread 12-18-2012, 05:08 PM   #7
4-eyes
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Alice is right. As an old boyfriend of mine once said, when talking about the deaths of his two siblings, "We all have our tragedies." It's true--we play the cards we're dealt in the best way we can.

Hugs!
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Unread 12-18-2012, 09:11 PM   #8
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Love isn't about what someone can DO for us; it's about who someone IS to us.

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