Hey hon! I know what you mean about the whole sex - or lack of - thing! LOL!

I am in the same boat. When I am FINALLY in the mood, my poor hubby is too tired!

You have a lot going on right now with the kiddos and dealing with MG - so please don't be too hard on yourself! After my surgery, I think I went 2 weeks without bathing, so to say I was gross is an understatement! When I FINALLY did shower, I made sure that someone was standing outside the bathroom - or my hubby was IN the room due to weakness and FEAR!

Pred can also effect your "drive" - some people react to it like spanish fly, while others have none @ all!

Is there anyone, ANYONE who can help you? Someone who can help cook and clean and take care of the kiddos? You need REST right now in order to get better - that and some more meds........

Hope to hear from you soon!
Take good care of yourself!
Erin

I dont know what part of your post you think is offensive.

Whats offensive is this crappy disease.

As far as sex, Im married 31 years, Im thankful when my wife is awake for me, and wants to get intimate with a fat ugly man with multiple diseases.

Sigarkiss,
Nothing in your post was offensive in any way!!!! I think it is awesome that you brought up the sex issue. I have often found myself wondering if others have the same issues and thanks to your post now I know they do. My problem is complete loss of interest. I feel bad for my poor husband but I just don't have the energy of the interest I used to. I keep thinking maybe once I start feeling better I will want to again. I think alot of my problem is a lack of self esteem right now. I have REALLY struggled with the Ptosis and the way it has changed my looks. Sometimes I look in the mirror and think I am starting to look sick. I told my husband to be prepared that if the Mestinon works I may look like a raccoon for a while because I am going to have a party with my eye make up LOL!!!

Keep hanging in there and hopefully you'll be feeling better soon. It always helps me to post here and get everyone's input on any question I have. This is such an amazing group of people.
Kendra

I agree with Kendra and Allen...Your post totally wasn't offensive at all!

I also have issues in that department (the sex one)...I sorta lost my sex drive a long time ago, mainly when I got really sick over a year ago...It's mainly a self-esteem thing, like what Kendra said...This being sick thing has changed my self-image...But I know that I have control over it, but now with the addition of prednisone, I don't care so much about changing it (zero sex drive, but I'm on a high dosage, so that wont happen to you! )...Also, I have a beard now, so I don't think my bf minds either! HAHA! lol...Just kidding, it's not a 'beard' per se, but I did notice new Elvis 'burns a' sproutin' and gettin' all shook up (i.e. thicker)! lol

Not offensive at all...I hate MG.

As for sex, I don't think MG physically has changed anything (except for those first few months before Mestinon when I could do nothing except lay in bed). But I have almost no self esteem and don't feel attractive or desirable now and this is a big problem for me...what do we do about self esteem?

I hope you are feeling better Sugarkiss.

DesertFlower,
You are TOTALLY right that there is no physical reason for this that I can come up with either. My self esteem has taken a huge blow too and I couldn't agree more about not feeling attractive or desirable. I feel like I live in hiding most of the time now. I live in dark sunglasses and wear them everywhere. I live in a town where everyone knows everyone else and I don't want people I knew from high school to see me this way. As for the sex part of it, it is almost impossible to have any interest when you feel so unattractive and your self esteem is so low. I wonder if this is common for people dealing with a life changing illness? I wish I knew what we could do about the self esteem issue!!! Is it possible that we are also suffering from depression and that makes us feel bad about ourselves? I am on an anti depressant but maybe it isn't working like it should. Just a thought.....
Kendra

Hello all! Our lack of sex drive could also be due to the meds - steroids can either rev up ir slow down the sex drive.....

I think we have ALL been thrown a loop by this pain in the butt disease! There is no rhyme or reason - we either feel great or totally crappy - our bodies are filled with lots of meds that no one should have to take. We gain or lose weight, have stretch marks, feel exhausted and are told by many in the medical field that we are nuts......very upsetting! No wonder we aren't randy all of the time!

I used to NEVER worry about how I looked. I was kind of cute and took it for granted. Now I'm a flippin beached whale with sideburns and stretch marks. There are scars all over my body from PICC lines and jug caths...... Just makes me want to cry! Funny I should care how I look NOW, but WTH?!?

If I ever do get my looks back I will be sooo very happy! I'd rather just be healthy, but looking cute would be a HUGE bonus!

Just wanted to VENT! Sorry!

Erin

Hey Erin,

I had to laugh about the sideburns...I have 'em too...They're terrible...I feel like everyday, I'm getting closer and closer to turning into Elvis...and I mean the not-so-cute Elvis towards the end of his carreer, not the younger one...At least if I were handsome, that'd be better! lol...

The worst for me is the swelling face and how everyone loves to comment on it...Whenever I run into people in the neighbourhood that I haven't seen in a long time, they're like, "What happened to you? You got so chubby!" and they cup their hands to their faces to indicate that it's my face that is chubby....My dad even called me pie-face! He's one to talk, he took high-dose prednisone too and got the cushingoid look! lol...I know that he was kidding around, but it makes me feel like I look really freakish or something!

The things we must endure to feel kinda normal!

but not to hate yourself.

you can still be very attractive with ptosis, or even wearing a respirator mask on, or with scars from muscle biopsies, central lines etc. and even looking quite vulnerable and frail.

most other people will easily get used to the way you look, once you do.

don't warriors have scars to show their courage and the way they fought their enemies in the various battles they had?

don't sportmen have their own injuries and scars?

so why not us, who are fighting a constant battle and have to "run a marathon"?

and yes, it is hard to find energy for sex, and you have to get used to the fact that it just can't be as nice and spontaneous anymore. but, that's true for life in general isn't it. you can't just "decide" to go out with friends after a day at work.

alice