Big week ahead!
 

Hello all! This is going to be a big week......I'm going back for the usual
(IV IG) and being tested for another autoimmune disease, plus I am having
lots of tests run to see what is going on with my lungs...........

On the positive side, I feel pretty sassy right now! I am still a big scared though, so for those of you who pray, would you mind doing so for me?

I don't mean to sound like a big baby, but the THOUGHT of another disease
just scares the heck out of me..........and I am still wondering what on earth
those grey areas on my lungs are........:o

I hope you all feel great and have a fabulous week!

Take care!
Erin:D

You got it!
 

I will pray for you Erin.

I'm sorry you're going through this right now. I hope the IV IG goes well.

If you do have another autoimmune disease I hope they are able to find and treat it quickly.

Please let me know what they find! I worry about you too. Your breathing has failed in the past and with all this going on I worry about you. But at least you will be at the hospital this week and hopefully you will get answer.

Anyway I hope that made sense and I hope you feel better real soon.

Have a great week.

:hug: Kristie

You're the WOOman!
 

Erin,
I'll be thinking of you for sure! Did they say what other disease they are thinking of?

You're a strong, brave, woman and I know that whatever life throws at you, you'll conquer because you've got that wonderful, positiveness about you. Best of luck and keep us posted, ok?

:hug: Becky

Hi Erin,
I'll be praying for you and I'll ask my Mom in Canada to do the same (I swear - she's got some sort of direct line!). Hope you get some answers and enjoy your re-charge! Take care of yourself and stay positive girlie!! We'll be waiting to see how you got on!
~Kathy

Hey Kathy,

your Mum and my Mum must have the same line!!!!

Hey Erin,

I'll be thinking of you, and hoping that you don't have to get stuck with too many needles, and also get all the really nice people to give you all the relevant procedures.
take care

hey erin
hope they can get you back on the right treatment its such a worry for you and all your family and maybe their is'nt any other disease and that would be nice oh i saw my neuro the other day and he said i could run a marathon again :Djust had my preds doubled stay positive:hug:
alan:)

Hey Kristie!
 

Hey Alan!
 

Hey Becky!
 

Hey Scotscat!
 

Hey there! Are you still swimming?? That was just so inspirational for the rest of us!

I feel 100% today! Love that liquid gold!

I am going home nightly, and that makes all the difference!

Is the new school ready? If so, have you moved in yet?

Thank you for the prayers - my BIG day is Friday - I'm gonna be praying like mad until then!

Take care!
:hug:Erin:hug:

HEy Redtail!
 

How are you hon? Are you feeling better? Have you had any more problems with your lips? Are you stonger?

The weather here has been BEAUTIFUL! 30's-40's @ night and 70's during the day - I would love to be outside tanning! LOL!

The PICC line went well. One bum vein and then voila! Jerry got it done in under 3 min - the fastest PICC guy in the US! LOL

CAn't wait to hear fom you!
:hug:ERin:hug:

Hi Erin,
I'm glad things are going well for you so far! I'll be keeping you in my prayers so that all the best happens on Friday.

I am still swimming - Tuesdays and Thursdays. Now i can totally keep up with and even beat the kids! I usually do about 20 laps during our session - I could probably manage more, but need to keep pace with the kids so they feel secure. There is only one girl who has autism and she beats me every lap! We have good races though and she loves the competition.

We have moved into our new school - it was a bit of an adjustment for the kids but we are starting to settle in nicely. It's a lot bigger too and three floors - last year i wouldn't have been able to easily get around, but now I'm racing around the place. It really is a spectacular building - it cost £25 million to build. There is even a whole fitness suite with workout machines. I'm tempted to try them out, but a bit nervous.

All the best for your hospital visits - it's nice that you can do it as an outpatient. That way you still get to be home with the family too! I'm sure your husband, son (and dogs) appreciate that! Take care of yourself!
~Kathy

Hi Erin
 

I was just coming on here to see how you were doing. I'm glad you are feeling great with the treatment! Bummer about the PICC line though. But at least he was able to get it in quickly!

I've never had one so I don't know how that is, but I have had arterial blood draws and if it feels anything like that I am so sorry.

That was quite a jump in blood pressure! Wow, I'm sure you're glad that part is over for this treatment.

I'm okay, my leg is healing up pretty well. I had to go to the doctor yesterday because I had a painful lump on my stomach in one of my injection sites from last week.

She says it an abscess but it's not in my lymph nodes so we should be able to kick it with just oral antibiotics. But I have to take my temp every day and keep an eye on the spot, if it gets any worse I have to go back in for IV antibiotics.

I'm going to see my Neuromuscular Neurologist today. They were finally able to get a hold of me after playing phone tag through the end of last week and yesterday. I called last week because it seems to be getting worse. If I get up to do anything it makes me feel too weak to breath.

So they want to see me today. I'm hoping I can get lucky enough that they have the results of my biopsy and I can cancel my next appointment. But I doubt they will. As long as they make it so that I don't have these breathing problems so bad I don't care.

The kids are great. Being kids, yesterday they took the sheets off Davids mattress put the mattress on the floor and then took the drawer from under the bed upside down on the floor. With all of the blankets from the drawer spread all across the room. All this while I was on the couch because any time I get up I get weak and I had just got done with breakfast and was on the phone with four different doctor's offices.

But it's been sunny here and Emily got to play outside last night for a little while with the neighbor kids. As soon as she gets done with her "homework" she will get to go out for a little while this morning before we have to go pick up the babysitter so I can go to the doctor.

I hope you're feeling even better today! How's the family? How long does it take at the hospital? I know when I did IV steroids it was two hours. I hope you can either nap or have a good book or something to do. Try not to be too bored.


Talk to ya later.

:hug: Kristie

IVIg
 

Hi Erin...

How long before you feel the effect of the IVIg? My brother had it 2 days ago, and has minimal improvement of symptoms.

Hi Erin,

so glad you were able to get the line in quickly this time!!!!
Hope you are soon feeling over the moon!

hey erin
just one more day to go then it should be good news you sound very positive thats lovely so i'm thinking of you and mike and devon they to eill be glad to have you strong again:hug:
well after the snow stoping me seeing my neuro and dr i saw him last week was on 30mg preds now he wants me to double it and stay on 240 mest'n
he was'nt bothered about my swallowing probems !!!!!!!!!!!legs are good
i'm working on my daughters new flat painting putting in a kitchen still lots to do but fun alan:)

:grouphug:

Erin, I really hope you get as good of news as you can tomorrow. If that grey lung stuff is "something" then I hope it's something they can fix.

I know it's scary staring down the possibility of another disease; especially when you are so young! Just take it one minute at a time. Lots of deep breaths! ;) You seem to have a great attitude and that is everything.

Annie

You're in my thoughts.
 

Hey Erin,

I'm sending good thoughts your way for the outcome today! I hope the IVIG gave you a great buzz, but try to be careful not to over-extend yourself physically or emotionally, ok? We're all pulling for you, girl.