Hiya,

Just to let you know its doing it again right now! Its very hot and I have basically been very stupid and done whey too much........

Did the cleaning...make legs shook throughout had a couple of hours rest and then walked the dogs. Sat here now with the clown face! But I wont be calling for anyone as its pointless. Im just hoping it eases up soon as Im starving!!! Oh well I suppose I could melt some ice cream!

Love Rach x

Hey sweetie! I KNOW I am a HUGE hypocrite, but you have got to take it ez - not ez - I know - I KNOW, but I am worried you are going to have a crisis and end up in the hosp - and you know firsthand how much they stink!

As for the clown face thing, and only being able to eat melted ice cream - I know exactly what you mean - truly! I was terrified, b/c I had no idea what was going on...none.......have you tried Ensure? Just the SMELL of it makes me sick to me stomach now b/c that was all I could choke down (literally) towards the end, but it is really good for you! Why is it that that stuff that is good for you taste AWFUL? Seriously!?!

I hope you are feeling better now!

Big hugs!
Erin

I agree with Erin. Ensure doesn't taste that great, but it's great for you! It helps to maintain energy and weight a bit while you're having difficulty with the eating. I'd eat it whenever I felt like it (already thin and don't want to lose more weight). Look into it, Rach.


Nicky

Hello again! I forgot to remind you that staying HYDRATED is crucial - crucial! Even if you have to suck on ice chips or make gatorade ice cubes in order to do so!

I always keep my drink handy and suck on the ice all day long..........b/c 4 a while there I was too weak to even chew and swallow ice.......

No matter else, please make sure you always have some ice/drink handy and drink all day long!

Big hugs!
ERin

Hi,

I managed to eat something as it wasn't as bad as it had been previously. I haven't had it yet today but Im getting the familiar feeling in my face again.

I got sent to bed by my husband! It was 5.20 in the evening and thats where I stayed. I took my next dose of mestinon and that worked and relieved it.

I am concerned at the moment as I seem to be very up and down. I have three dogs and my boy doggie (who's a mummies boy) hasn't left my side for two days now. Everytime I have been really bad for a few days before hand he's really clingy. Has anyone else noticed this with their animals? He literally follows me everywhere and gets very anxious.

I also woke up to find I had a kidney infection again, so that probably hasn't helped things. Im now taking anti biotics so I know the next week is going to be pants!

Im trying to do the absolute minimum, but you guys and girls know its hard. The dogs make such a mess of the place! they are really moulting at the moment and theres great balls of fluff everywhere. Plus the dust they create. Doesn't look lke I did anything yesterday cleaning wise.

I just feel so guilty sitting or lying around all day whilst my husband goes off to work. I know he doesn't mind if the house is a mess, but I dont feel I contribute anything and it all falls on his shoulders.

I guess everyone on this forum knows this feeling, I find it very hard to deal with.

Thanks for your support and advice its noted and appreciated.

Love
Rach

Hey Rach! Sorry to hear you are feeling so puny.....my dogs do the EXACT same thing when I am about to crash or feel awful! They stay right by my side and attack ANYONE that comes near me - esp my chihuahua, Coronado. He was too cute! Right after my thymectomy, he would sleep with his little head on my chest and his "arms" wrapped around my neck.

Be forewarned that antibiotics can make you weaker - learned that the hard way, as no dr told me told expect it!

Saw my hemo today - I have gained 30 lbs in the last 5 months - 30 freakin lbs! Can't believe it! I am such a hog right now! I hate to look in the mirror b/c I still can't believe how much I've changed! I shouldn't be whining, b/c b/4 I wasn't even able to swallow, but I have morphed into this hairy, fat, sweaty creature!

Enough ranting for today!

Big hugs!
Erin

It's so funny you all are talking about dogs today. My husband called me from work today and said he wants to get me a dog, which is a big statement from him. Rach, be careful about the antibiotics like Erin said. I've had problems with those as well.

The other day I mentioned that I was having a double IVIG treatment. I usually have 400mg but this is 1 gram in a single infusion. Well, it did help the MG, but I've had some serious side effects. First, I broke out in large hives all over my arms, face and back and felt like I had been run over by a truck. Yesterday morning I woke with horrible head pain and nausea. I've been in bed ever since except for going to my doctor twice. My blood pressure has spiked to 180/120 (it's always normal). I read online from the IVIG manufacturer that people over 50 are not recommended to have more than 400 mg in one infusion, that anything more is generally more than your body can tolerate at that age. It listed the dangers as spike in blood pressure and severe headache with vascular complications. Well, I've learned a lesson here - just an fyi to everyone in my age bracket to be cautious in this regard.

Rach, I don't know what antibiotic you're taking, but if you go to Myasthenia Gravis.org, you can get the list of drugs including antibiotics, that we should not take. Hope you start feeling better soon. REST!

Hugs,
Pat

My dear dog, Ned(RIP) was totally amazing. If I was having a bad time, he would jump up on the bed uninvited, which he knew he wasnt aloud to do, but he knew I needed him near.
Once when I collapsed in the early hours of the morning on the way back from the toilet, he curled up against my back, until I was able to crawl back to bed. He certainly looked after me in his own little way.

Hi,

thanks for those replies. It was great to hear about mans best friend protecting us all!

Im on Augmentin or co-amoiclav, its penicillin. So that should be ok. I just know with an infection and antibiotics I wont be good.

My face is playing up again today which is great as I have the washing machine repair man coming and hes going to think Im a freak! Wshing machine blew up saturday and this will be his second visit! Wish me luck as I dont know how much longer my neighbours will let me use their machines! They have been absolute stars!

Thanks again
Love
Rach x