[erinhermes]

Hi guys! I'm heading BACK for more IV IG - just feeling really crappy and had dv for the first time since taking pred - in other words over a year!

I am soooooo upset! It seems like one step forward, two steps back!
I know that I am going to feel amazing after the IV IG, I just HATE the thought of going back so soon - less than 3 weeks (?).......

Called my wonderful neuro last night b/c of the double vision and he (being the amazing guy that he is) called me right back - he wanted me to go in today but I simply couldn't.

This is really starting to upset my family. They are getting down b/c I am never home.

Sorry, just wanted to vent....

Big hugs!
Erin

[TxSimon]

Erin,
Hang in there girl and know that my prayers are with you! I know your juice will do the trick, so take care and let us know how things are going.
Big hugs to you,
Simon

[Nicknerd]

Hi Erin,

I'm so sorry that you gotta go back for the treatment! I know how you feel, when you think that you should be getting better, but the MG just wont quit...Something will give, though...It's just a matter of time

Whatever you do, don't feel guilty because you're sick- it's not your fault! You never asked for this- you're fighting tooth-and-nail to get better...Your family wants you to get better too, and you really will!

Did the doctor decrease your prednisone recently? Is this maybe why you're relapsing quickly?

I hope that you feel better soon, and let us know how things are going along the way!

Nicky

[redtail]

Hey Erin,

It aint fair that you have to go back so soon!!
I'm with Nicky, don't feel guilty about being sick.

I had double vision on and off for quite a while, usually when my pred was decreased, and I cant seem to get below the magical number of 15mg alternate days, well its my magical number....................and I really don't like the fact that I can't seem to cope with out it below that number, still I guess its better than what I started out on.

will be thinking of you m'dear, and hope everything goes smoothly
take care of yourself
Kate

[AnnieB3]

Erin, I'm sorry you have to go back in. Can't they do a home infusion, at least once and a while?

This is the thing with any illness . . . the quicker you and your family "accept" what comes along with it, the sooner everyone can be okay with it. That's easier said than done, I know. But this is your "new reality" and it's more than okay because it is keeping you ALIVE and well. Isn't that the important thing? It's everything, really.

My Dad spent the last 16 months of his life in various hospitals, transitional care facilities and nursing homes. I would much rather have had him at home but that would not have been good for him. I'm grateful he lasted as long as he did - he suffered for 48 years. I'm saying this because it doesn't matter where people are - love is the only important thing. And that transcends time, space and death. Sorry, being a little maudlin. In that kind of mood.

Just get better!!

Annie

[suev]

Erin,
Sorry you have to go back to hospital. But your neuro has to call 'em as he sees 'em. Remember something....your family is frustrated with the MG - - not with the person who has it. Focus on getting well - - and resting....even when you want to be doing things for other people.
Take care of yourself first...it's important.
Sue

[rach73]

Im so sorry that you have to go back into the hospital.

I noticed that you said that you have been decreasing the steroids. As soon as I started tapering mine I had double vision when I hadn't had it as a symptom before. The more I reduced the pred the more symptoms I got that were classical MG. It may just be the case that your steroids need bumped up for a while longer.

My panicky post yesterday was due to not wanting to burden people. My sister and her baby are still in the hospital, they are ok but obviously this is putting a lot of pressure on my parents. The last thing they need is me being sicker than normal with something else. I ended up telling them, as I knew that they would hear the stress in my voice.

Your family is worried about you and it manifests in many different ways. Jamie can get quite shirty with me, thats when I know hes really worried. Also for a loved ones it must be awful watching you get worse and knowing that there is nothing that they can do or say to make you feel better. Thats bound to get them down.

You need to be in the hospital and to let them get you over this hurdle so you can spend more time with your family.

Yes your right logical rational Rach has re-entered the building!

Love
Rach

[scarpettafan]

Erin

I am so sorry that you are having to go back to the hospital. I will be praying that God will give you peace of mind and body and that He will help your family as well.

[sugrkiss]

Erin,

I'm sorry you are having such a hard time. I hope the IVIG works well and you are feeling better soon.


Jess

[JCPA]

Erin
I am really sorry for your situation......I will pray for you right now. Don't worry about your family....believe me....I can tell from some of your previous posts that you have a very supportive family so don't put more worry on yourself than you need to. It is important too that you try to remain stress free as well for recovery. Your family supports you and will always be there for you.

And we support you too.