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erinhermes 04-23-2009 07:25 PM

Bad, bad day!
 
Hello all! Just want to vent today!

Bad, bad day! I went in to have my line flushed and was barely able to walk the 1000 ft to the front door - had charlie horse pains this morning and was really, really weak.........hating MG more than ever today!:mad:

I know the charlie horse pains are b/c I haven;t taken my potassium in a few days - no idea how imortant it was to take EVERY day - even though I am also on prenatal vitamins - pred is just so flipping hard on the body!

I'm also going to take a leave of absence for a while - until I get stronger - I just really hate being housebound all day......but I need to rest until I am stronger! I cannot wait to see Dr. I on Monday and see what he says.

My big "fear" is that he will make me have the plasma exchange AGAIN - hate that one - they always "knick" my nerve - add to that the fact that my platelet count is high, so I scar internally and they really have to dig hard to get through it and you have one ticked off lady - I was fighting with the guy last time as he was placing the line - only me! LOL

What a junk day!

*sigh*
Erin:(


Pepe 04-24-2009 07:17 AM

Quote:

Originally Posted by erinhermes (Post 500391)
Hello all! Just want to vent today!

Bad, bad day! I went in to have my line flushed and was barely able to walk the 1000 ft to the front door - had charlie horse pains this morning and was really, really weak.........hating MG more than ever today!:mad:

I know the charlie horse pains are b/c I haven;t taken my potassium in a few days - no idea how imortant it was to take EVERY day - even though I am also on prenatal vitamins - pred is just so flipping hard on the body!

I'm also going to take a leave of absence for a while - until I get stronger - I just really hate being housebound all day......but I need to rest until I am stronger! I cannot wait to see Dr. I on Monday and see what he says.

My big "fear" is that he will make me have the plasma exchange AGAIN - hate that one - they always "knick" my nerve - add to that the fact that my platelet count is high, so I scar internally and they really have to dig hard to get through it and you have one ticked off lady - I was fighting with the guy last time as he was placing the line - only me! LOL

What a junk day!

*sigh*
Erin:(


Erin:

I'm so sorry that you are going through this, especially the thought of plasma exchange. I have had the same experience, so I know where you are coming from. You are not alone. Hopefully when you see the Doctor on Monday, there will be other options, please keep me posted. Until then, you are in my thoughts and prayers.
Dorothy

rezmommy 04-24-2009 09:14 AM

Erin,
I feel for you. Those crappy days are the worst. I hope that today is a little brighter for you. Prayers are sent your way. ~ Mel

nemsmom 04-24-2009 09:34 AM

Hi Erin,

I'm sorry you had a rough day. I hope today is better. Talk to ya soon.

Kristie

Maxwell'sMom 04-24-2009 09:49 AM

:hug:Hi Erin, I too am so sorry. It is indeed a real pain in the neck being sick, and feeling trapped inside all the time..at least this is what I feel. I've been house bound so long that I feel like when I do get a hold of a living breathing human being infront of me, I don't want them to go. ..:o
Yesterday during my Iron Infusion, the nurse had a problem with my vein. Call me uptight, ****, or whatever, but, I don't care to have them dig around, as though they're digging for gold in my Arm.
The last time, She bent the needle, how is that possible?? When she pulled it out, it looked like a tiny fish hook....um..Not good, and never ever had that happen to me before!!! It wasn't fun getting the needle out either.
I joked, that I knew I needed to get a lot of Iron, but bending of a needle may mean enough is enough...
And for some reason, been in the mood to see the movie "Iron Man"...lol
Sorry sick person humor..
All kidding aside, I do understand what your feeling, and it is soooo frustrating.
Hang in there, better days are ahead.
Much Love
Lizzie

ras1256 04-24-2009 10:11 PM

Oh Baby Girl! I'm sorry you're having a rough one! You're not having any breathing issues are you?

I think it's a good idea to take a leave and let your strength build up. Just remember not to go too hard as soon as you feel stronger, ok? Just keep telling yourself to be patient and let it REALLY build up - then pace yourself afterward so you don't use it all up.

I hope you don't have to have the plasma.. I have really bad veins too and boy can I identify with you and Lizzie on the needles. When I got my aneurysm coiled that nurse dug & dug - I had a huge hematoma on my left hand. It stuck up about 2 inches and my whole hand swelled and was so purple. Next time in, I'm gonna tell them someone else needs to sink the needles. Very few are able to hit me right, then I often blow the veins - haven't had to have plasma myself yet and I honestly don't know if my veins would hold for it.

Just keep deep breathing and looking ahead to that day when you don't have to go through this all the time to feel good for a while! It'll come.

Lot's 'o Love to you!

redtail 04-25-2009 08:23 PM

Hi Erin,

so sorry you arn't doing too badly, I hope you don't have to have a plasma exchange!!

I've had a busy few days, friday, I babysat my 7 year old niece, we cooked ANZAC biscuits and made sheperds pie for our dinners. Yesterday I drove 40km to attend ANZAC day ceremonies, and then went to Dads nursing home for the ceremony there and had lunch with him...............Today I can barley type, am running to the toilet and feeling just plain sick, it just ain't fair is it, we seem to be doing well then come crashing down. You would think after nearly 7 years I would be use to it, but I guess I keep hoping things will change. Sorry to take over your thread, I do hope today that you are feeling a lot better.
I'm spending the rest of the day resting!!
take care
Kate

ras1256 04-26-2009 10:05 AM

Yeah, sure bites!
 
Kate,
It's terrible that you couldn't enjoy your day without paying a big price.
Being diseased is so "sick and wrong!"

Yesterday there was a cool front moving through here (Denver, CO USA) and man - those things trash me out! I was rotten all day. The sun is out now, though and the front seems to have passed so I'm hoping for a better day today. I know you were responding to Erin, but I wanted to throw some sympathy your way, too.

Hope it just takes one day of rest for you!



Quote:

Originally Posted by redtail (Post 501186)
Hi Erin,

so sorry you arn't doing too badly, I hope you don't have to have a plasma exchange!!

I've had a busy few days, friday, I babysat my 7 year old niece, we cooked ANZAC biscuits and made sheperds pie for our dinners. Yesterday I drove 40km to attend ANZAC day ceremonies, and then went to Dads nursing home for the ceremony there and had lunch with him...............Today I can barley type, am running to the toilet and feeling just plain sick, it just ain't fair is it, we seem to be doing well then come crashing down. You would think after nearly 7 years I would be use to it, but I guess I keep hoping things will change. Sorry to take over your thread, I do hope today that you are feeling a lot better.
I'm spending the rest of the day resting!!
take care
Kate


erinhermes 04-26-2009 07:08 PM

Hi Dorothy!
 



You are so sweet! I really appreciate the prayers - as I am a BIG believer in the power of prayer!

Doesn't the exchange stink? I just can't stand the thought of it, but I know it helps - I'm just scared that I am going to go out of my mind while they place it.......It also looks so UGLY and hurts, but then again I know it is b/c they are doing it wrong! I was cussing out the guy that did it last time - it was CRAZY! I am not a cusser, but it did hurt a bit! YUCK!

I cannot wait to see Dr. I! He always makes me feel safe, b/c I know he won't sugar coat ANYTHING! I am still hoping he will reduce my pred cuz' I am heavier than ever - and my "sexy" sideburns have come back - lol!:D

How are YOU? Are you OK? Feeling stronger?

Can't wait to hear from you!
Big, big hugs!
ERin:D
Quote:

Originally Posted by Pepe (Post 500542)
Erin:

I'm so sorry that you are going through this, especially the thought of plasma exchange. I have had the same experience, so I know where you are coming from. You are not alone. Hopefully when you see the Doctor on Monday, there will be other options, please keep me posted. Until then, you are in my thoughts and prayers.
Dorothy


erinhermes 04-26-2009 07:10 PM

Hey Mel!
 
How are YOU? Are you feeling stronger yet? Have you talked with your doc about your eyes? How is your chest?

Today is a lot brighter! Mike and I went out of town to a little b & b right outside of San Antonio, where I slept mostof the time - that was wonderful! No kids! No dogs! Wonderful!

Big, big hugs!
Erin:D
Quote:

Originally Posted by rezmommy (Post 500587)
Erin,
I feel for you. Those crappy days are the worst. I hope that today is a little brighter for you. Prayers are sent your way. ~ Mel


erinhermes 04-26-2009 07:12 PM

HI Kristie!
 
How are you hon? Are YOU feeling better? How about your little ones and hubby? Any new news on the medical front?

Today has been much better!

Can't wait to hear from you!
Erin:D
Quote:

Originally Posted by nemsmom (Post 500591)
Hi Erin,

I'm sorry you had a rough day. I hope today is better. Talk to ya soon.

Kristie


erinhermes 04-26-2009 07:16 PM

Hi LIzzie!
 
How are YOU hon? I think I wold have knocked out the "great" nuse that bent your needle - still have no idea how on earth that happened!

I am the same way about having people over - I just don't want them to leave - I hate being stuck here, but belive it is best for the time being @ least!

You have a GREAT sense of humor! I love it!:D

My pastor stopped by again otday and prayed with me - it felt so great! He really is amazing! He seems to "know" when I need prayer most!

When do you have your next infusion? Are you OK?

My thoughts and prayers are with you!
Big, big hugs!
ERin:D





Quote:

Originally Posted by Maxwell'sMom (Post 500594)
:hug:Hi Erin, I too am so sorry. It is indeed a real pain in the neck being sick, and feeling trapped inside all the time..at least this is what I feel. I've been house bound so long that I feel like when I do get a hold of a living breathing human being infront of me, I don't want them to go. ..:o
Yesterday during my Iron Infusion, the nurse had a problem with my vein. Call me uptight, ****, or whatever, but, I don't care to have them dig around, as though they're digging for gold in my Arm.
The last time, She bent the needle, how is that possible?? When she pulled it out, it looked like a tiny fish hook....um..Not good, and never ever had that happen to me before!!! It wasn't fun getting the needle out either.
I joked, that I knew I needed to get a lot of Iron, but bending of a needle may mean enough is enough...
And for some reason, been in the mood to see the movie "Iron Man"...lol
Sorry sick person humor..
All kidding aside, I do understand what your feeling, and it is soooo frustrating.
Hang in there, better days are ahead.
Much Love
Lizzie


erinhermes 04-26-2009 07:23 PM

Hi Becky!
 
Nope, no breathing issues (thank God for that)............

I am really looking forward to my lave of absence, as I can still get stuff done from home, but won't wear myself out and can take naps when needed. It will be hard to get used to, but so much better in the long run!

I have just got to learn the pacing thing! And I will. I've got to!

I think the pred is the reason for the bad veins - they were always GREAT before. Now they have to dig and dig and put a warm glove on my hand in order to get my bi-weekly blood work done. I would love to not have to get it done, but Dr. I told me that if I don't he will pull my Imuran......

You re always so sweet and upbeat! Do you have any idea how RARE that is? It is so wonderful!

Big, big hugs!
ERin



Quote:

Originally Posted by ras1256 (Post 500875)
Oh Baby Girl! I'm sorry you're having a rough one! You're not having any breathing issues are you?

I think it's a good idea to take a leave and let your strength build up. Just remember not to go too hard as soon as you feel stronger, ok? Just keep telling yourself to be patient and let it REALLY build up - then pace yourself afterward so you don't use it all up.

I hope you don't have to have the plasma.. I have really bad veins too and boy can I identify with you and Lizzie on the needles. When I got my aneurysm coiled that nurse dug & dug - I had a huge hematoma on my left hand. It stuck up about 2 inches and my whole hand swelled and was so purple. Next time in, I'm gonna tell them someone else needs to sink the needles. Very few are able to hit me right, then I often blow the veins - haven't had to have plasma myself yet and I honestly don't know if my veins would hold for it.

Just keep deep breathing and looking ahead to that day when you don't have to go through this all the time to feel good for a while! It'll come.

Lot's 'o Love to you!


erinhermes 04-26-2009 07:27 PM

Hey Kate!
 



Sorry to hear you are feeling puny! I don't know if any of us will EVER get used to the ups/downs of MG......too hard!

Was it great babysitting? Are you finally getting rain?

Sheperda pie sounds sooooooooooooo good right now! I could eat a tub of it! LOL!

You just RELAX and get better! Everyone loves hearig from you! You kke us ALL feel better!

Hope you feel better soon! Miss you!

Erin:D
Quote:

Originally Posted by redtail (Post 501186)
Hi Erin,

so sorry you arn't doing too badly, I hope you don't have to have a plasma exchange!!

I've had a busy few days, friday, I babysat my 7 year old niece, we cooked ANZAC biscuits and made sheperds pie for our dinners. Yesterday I drove 40km to attend ANZAC day ceremonies, and then went to Dads nursing home for the ceremony there and had lunch with him...............Today I can barley type, am running to the toilet and feeling just plain sick, it just ain't fair is it, we seem to be doing well then come crashing down. You would think after nearly 7 years I would be use to it, but I guess I keep hoping things will change. Sorry to take over your thread, I do hope today that you are feeling a lot better.
I'm spending the rest of the day resting!!
take care
Kate


nemsmom 04-27-2009 10:27 AM

I'm glad you had a better day
 
Quote:

Originally Posted by erinhermes (Post 501519)
How are you hon? Are YOU feeling better? How about your little ones and hubby? Any new news on the medical front?

Today has been much better!

Can't wait to hear from you!
Erin:D

Hi Erin

I'm not feeling any better, actually now I have some kind of stomach bug making me vomit, ugh what fun. So far it's only been once so lets hope it will just go away with that. David had it on Friday and he would vomit about two hours after any time he ate or drank.

Emily started vomiting this morning and Dan thinks he's getting it too. At least it was only a 24 hour thing. I have to get up and make David breakfast and find something easy for me and Emily.

Talk to ya later
Kristie

erinhermes 04-27-2009 02:09 PM

Try and take it easy!
 


Try and take it easy, hon!

:hug:Erin:hug:
Quote:

Originally Posted by nemsmom (Post 501779)
Hi Erin

I'm not feeling any better, actually now I have some kind of stomach bug making me vomit, ugh what fun. So far it's only been once so lets hope it will just go away with that. David had it on Friday and he would vomit about two hours after any time he ate or drank.

Emily started vomiting this morning and Dan thinks he's getting it too. At least it was only a 24 hour thing. I have to get up and make David breakfast and find something easy for me and Emily.

Talk to ya later
Kristie



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