[momma3love]

I know that someone always has something going on. But it seems like more than ever a lot of us are not feeling too great. So I say we all go to some IVIG/Plasma exchange spa. LOL. Maybe somewhere with mild temperatures. No extremes. Just perfect weather where we all meet, swap stories and just plain get better. Who's with me? OK so not possible but it was a nice trip.

I just want to not be in crisis limbo, as I call it, anymore. I am really not feeling good. My grandma was admitted to the hospital last Sunday for a heart attack. So I went with my mom to see her. The temps were over 100 there and car ride was 4 hours there. For some reason car rides really tire me out. On the way back home the next day I could not swallow my own saliva without aspirating and had trouble breathing. I really should have just gone to a hospital. But past experiences have proved utterly pointless. I called my neuro, who was mad at me, and he said next time go to hosp and have them call their office day or night. That way I will never be left untreated or asked what it is usually done for me in this situation. Yeah that's the usual reaction. "Well ma'am the on call neuro has no idea what to do, what is usually done?" That is usually what I get or left unmonitored for hours at a time in the room and then told it seems you are doing better now.

Anyway, so I am still feeling really weak. Ptosis, swallowing difficulties, breathing difficulties, aspirating off and on, can hardly walk. I fatigue so easy. So I am staying on the couch unless absolutely necessary to get up. Luckily my boys are somewhat used to fending for themselves. I am taking more mestinon than I have ever taken before. That's what is barely keeping me out of the ER I think. It's just really hard to live like this. If I get up and do anything it just starts to get bad. But I have to go have lab tests tomorrow so I guess if it starts to happen again I will just go in and hopefully get out of this limbo.

Just a side note has anyone heard how Nicknerd's surgery went? I hope everything is alright with her. And I hope for all our sakes the hot weather settles down. Most of all everyone needs that boost of strength we are all missing right now. Take care all. And just picture that spa whenever you start to really feel drained and maybe we can all take heart.
Hugs to Everyone,
Carrie

[erinhermes]

Oh, sweetheart, I am so sorry to hear you are feeling so awful! It DOES sound like you need a "boost" really, really soon or you may wind up in the hospital, so if you feel like this 2morrow, please call your Dr and tell him/her you need help NOW!

When swallowing your saliva becomes a problem - as well as "simple" things like breathing become too much, it is TIME to go in! Please don't do what I did - it made me wind up in the ICU for 8 flippin days!

I will ask my pastor and family to pray for you! Hang in there, sweetheart!

Please call your dr 2morrow! You NEED MEDICAL help right away!

Love,
Erin

Originally Posted by momma3love

I know that someone always has something going on. But it seems like more than ever a lot of us are not feeling too great. So I say we all go to some IVIG/Plasma exchange spa. LOL. Maybe somewhere with mild temperatures. No extremes. Just perfect weather where we all meet, swap stories and just plain get better. Who's with me? OK so not possible but it was a nice trip.

I just want to not be in crisis limbo, as I call it, anymore. I am really not feeling good. My grandma was admitted to the hospital last Sunday for a heart attack. So I went with my mom to see her. The temps were over 100 there and car ride was 4 hours there. For some reason car rides really tire me out. On the way back home the next day I could not swallow my own saliva without aspirating and had trouble breathing. I really should have just gone to a hospital. But past experiences have proved utterly pointless. I called my neuro, who was mad at me, and he said next time go to hosp and have them call their office day or night. That way I will never be left untreated or asked what it is usually done for me in this situation. Yeah that's the usual reaction. "Well ma'am the on call neuro has no idea what to do, what is usually done?" That is usually what I get or left unmonitored for hours at a time in the room and then told it seems you are doing better now.

Anyway, so I am still feeling really weak. Ptosis, swallowing difficulties, breathing difficulties, aspirating off and on, can hardly walk. I fatigue so easy. So I am staying on the couch unless absolutely necessary to get up. Luckily my boys are somewhat used to fending for themselves. I am taking more mestinon than I have ever taken before. That's what is barely keeping me out of the ER I think. It's just really hard to live like this. If I get up and do anything it just starts to get bad. But I have to go have lab tests tomorrow so I guess if it starts to happen again I will just go in and hopefully get out of this limbo.

Just a side note has anyone heard how Nicknerd's surgery went? I hope everything is alright with her. And I hope for all our sakes the hot weather settles down. Most of all everyone needs that boost of strength we are all missing right now. Take care all. And just picture that spa whenever you start to really feel drained and maybe we can all take heart.
Hugs to Everyone,
Carrie

[Pat 110]

Hi Carrie,

I am so sorry you are not doing well at all. Three years ago I was feeling much like you described and before I knew it, I was in the ICU for 5 days. Please call your neuro right away, so you can get some help or just go to the ER before you get any worse. I just love your spa idea...sign me up! I will keep you in my thoughts & prayers. Take care.

Hugs,
Pat

[Joanmarie63]

I hate that you are having a hard time and hope things start improving soon. I know what you mean about going to the ER, I don't go anymore, last time I went they were so excited to have someone with MG that I was a case study, when I was finally able to speak I explained that when someone with MG comes in they need to help me breath first and foremost and not treat me like a science lab study.

[rach73]

I hope you are feeling better.

I know what you mean about not wanting to go to the ER and then being left not monitored and then told you were perking up.

Im taking mestinon like its m and ms and the moment! Ive told my husband not to call for an ambulance unless my lips turn blue or Im unconscious. Ive told him a call before that is grounds for divorce!LOL Purely because Im treated so badly when I get there. Thanks to medical notes from a dr a met for 10mins who thinks its all in my head.

The stress thing I totally get. Im in the middle of a court case and we've had a family bereavement. Friday it all got too much. Today Ive told myself what will be will be and all the panicking in the world will not change the outcome. Its working at the moment.

I do think its down to the personality trait of MGers though. I think we desperately need and want to be in control of everything. We dont cut ourselves any slack. Plus this illness takes away control, so we cling onto anything we can, that gives us a sense of control.

Car journeys do me too! Sorry this post is all over the place but my short term memory is shot to bits!

I hope you feel better and stronger too. Know that people are thinking about you and praying for you.

Take care of yourself
Love
Rach

[erinhermes]

Hey honey! I'm just checking in to see how how YOU are doing today!

We MG'ers do have a tendency do overdo it on our good days, but I think it is b/c we don't know when our next "good" day will be!

You have been so brave through all of this. I know the fear of going to sleep, worrying about not waking up. I know the frustration of needing to get stuff done, but I have put it in God's hands.

Hang in there, sweetheart!

Erin

[momma3love]

I am feeling a bit better today. But it has been hot here and is gonna continue to be hot here til the weekend at least. So I am worried how bad I am gonna get. We are not used to triple digit weather here and we don't have AC!

I hope you are feeling better Erin. We are all such strong women who take care of our house and home as best we can. I love being able to come on here and get support and know someone truly understands.

Pat, Joan, and Rachel thank you all so much for the support too. I think next time I really start having trouble breathing I am gonna try the ER. It may be fruitless, but I gotta try. I do not want to end up in the ICU or on the ventilator. That really scares me. So maybe I got over that hill and I will continue to feel better. Well I am off to bed, hope everyone has a great day tomorrow! If not don't forget about the spa, massages along with our much needed boosts. LOL.

Originally Posted by erinhermes

Hey honey! I'm just checking in to see how how YOU are doing today!

We MG'ers do have a tendency do overdo it on our good days, but I think it is b/c we don't know when our next "good" day will be!

You have been so brave through all of this. I know the fear of going to sleep, worrying about not waking up. I know the frustration of needing to get stuff done, but I have put it in God's hands.

Hang in there, sweetheart!

Erin

[ConnieS]

Hey how are you feeling? Do hope that you're feeling better?

I love your idea of a spa trip, though it isn't really possible for me at the moment, I'm still visualising us doing it together. =) I'm with you!

Car journeys tire me out as well, can't last longer than half an hour. Know what you mean about not wanting to go into the ER then have them not doing anything useful. Lol. Its what's keeping me away too!

Am also wondering how Nicky's surgery went. She's been so absolutely awesome, I just miss her!

[redtail]

A spa sounds divine, mmmmm soaking up warming sun. The north west of western australia isn't too bad at the moment, around 32C, Cable Beach Broome is VERY NICE, I hear.