[erinhermes]

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!

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]

Originally Posted by erinhermes

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!

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]

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]

Hi Erin,

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

Kristie

[Maxwell'sMom]

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. ..
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]

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]

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]

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!

Originally Posted by redtail

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]

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!

How are YOU? Are you OK? Feeling stronger?

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

Originally Posted by Pepe

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]

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

Originally Posted by rezmommy

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