Feeling puny again - maybe it's time for more IV IV...
 

:(Hello all! I've been feeling really puny recently - maybe it's the move, or just general stress, but whatever the cause just can't seem to feel well, so 2morrow I'm gonna call my neuro:( - I just hope and pray he only wants me to have IV IG and NOT the other - I cannot handle the other - too darn scary and invasive for me! Yuck!

Maybe (hopefully) I just have a little bug or something......all I know is that this weekend I was MIA and haven't felt well ever since..........

My neuro is really great but he makes sure that when I feel yucky I am admitted to the hospital for another round of tests, etc and lots of meds, different treatments - (amen for insurance:)..........

Those of you that know me, please, please pray for me! I could certainly use it right now:(.........................

Take care!
Erin

Sorry you're feeling yucky poo but you sure had a good run of it. Most of us don't last so long between infusions.

I have to say, I have a BIG problem with your doctor admitting you for any little flare, and running tests, etc. You have MG--it waxes and wanes. He needs to learn to deal with it. All I have ever done is call and my doc orders up whatever I need. I've NEVER been hospitalized in 10 years merely for "MG stuff" and I've been VERY VERY sick more than a few times. You are at much greater risk of catching a bug (and I don't mean a LITTLE one) by being in the hospital.

Do call and let your doc know. You don't HAVE to agree to plasma...I've refused it a few times (never done it--it frightens me.) It's not been a problem. I'd also push for IVIG in the home or outpatient setting. Now that you're taking Cellcept (and what a tiny dose you're on!) you are more prone to catching the nasty bugs that lurk in the hospital setting.

Just for grins, if I were your neuro, I'd bump up the pred a tiny bit and increase the CC to 2000 daily. I'd also order you some IVIG at home.:p Will be interesting to see what your doc does. (Ahhhh, the ways we amuse ourselves--playing doctor!)

Keep us posted.

Missy

Hi Erin
you have been so busy the last few days maybe its not as bad as your fearing!!!!!!!!!!!! anyway just want to wish you a speedy recovery and a big:hug:
thoughts are with you Alan:)

Hope you can get some meds that help you!

Woke up Tuesday feeling GREAT!
 

Craziest thing! Woke up Tuesday feeling like my old self! It was WONDERFUL!
:D

I think the fact that I had 3 horrible tooth infections coupled with a sinus infection is what made me feel so awful! That or the move - changed offices!

I finally got some anitbiotics, so hopefully I will feel even better once my infections have cleared up:D..........

I was able to work and watch my precious niece today! She is 6 and so much fun! It was a really productive and fun day, but I am WIPED now!

My brother in law and stepson both have birthday parties planned this weekend - fun! 2morrow is karaoke night (For Aaron who is turning 30) and Saturday for Scott (who is turning 16) - both milestone birthdays!

Granted, I may wake up 2morrow and be too tired to get off the sofa, but it has really been better the last couple of days........:D

Jennifer - thanks for the kind words! You always cheer me up!

Alan - Thank you! You were completely right! I went to my dad's thing @ the social security office and it went great! They are only going to take $10 versus the original $400+.......I think I just overdid it! I really need to listen to my body more and stop trying to handle everything! My family can take care of themselves.........

Missy - were you a Dr? You are so darned smart! You really know what you are talking about! It always amazes me..........:D
My neuro does have me in the hospital quite a bit, but I think he's just worried that I'll get really sick again (whe I first saw him, even my face was "frozen" and my eyes were rolling around in my head - just awful!) He has given me his word that he will never allow me to get that sick again. He really is a great guy! He's the one that I was teeling you about that was holding my hand when I "came to" in post op...........:D
I hope to NEVER go back to the hospital. That is what killed my Grandmother - she caught pnuemonia after her heart transplant (well, 7 years after it)......

Thank you all!
Erin

No Erin, I am not a doctor....perish the thought. I am, however, a health care professional, with years of hospital experience, and a long time "medical nerd" (watched "Marcus Welby, MD faithfully starting in first grade!) After literally thousands of hours researching various medical issues and having MG for 10 years, I've got a pretty good "feel" for the beast.

Glad you're better. You really need to tend to your oral health. Bad oral health affects the entire body, and can contribute to heart attacks and strokes! (It also can make your breath smell like POO!:p )

Take care!

Missy

Hello again!
 

Hey girl! THe reason for my many, many, many abcesses is that when I had my crowns put on, my dentist (a truly wicked man) shaved all my teeth down way too far, thereby killing all of them! I have had to date over 30 root canals and can now only see a specialist that charges $2000 per root canal. Before I had my crowns put on, I never even had a single cavity - my teeth were a little crooked (me and my stupid vanity) so Dr. Minor shaved down 16 teeth - the absolute worst choice of my entire life. Then the genius didn't even SEAL the teeth @ my gum line. I am still paying for it after all these years.............:(

I am still trying to have him pay for what he did to me. No one should have to go through what I've been through. His negligence really ruined my life...........

Of course, now no normal dentist will even see me - too risky in their opinion!

Joy!

Take care!
Erin

Hi Erin
hey toothache that can be so painful but not as bad as those bugs!!! and your busy week is over so less stress for you Glad alls well!!!!!!!!!!! oh that breath thing thats scary :eek:
take rest:)

YIKES! That sounds HORRIBLE. Teeth are such a part of who we ARE, and to have gone through what you have....makes me shudder.

I'm currently wearing braces on my teeth. Interesting with the eating problems I have due to the MG. Oh well, maybe only 6 more months or so to go and then my smile should be much improved.

Take care of "the self" (as my dd used to say)

Missy

How are your renovations going?
 

Missy,

Hey there! How is your daughter doing with all of the new and strange sounds/noises/etc that are all part and parcel with renovations? I know my son cannot stand it when things are out of order or even when our home is messy, so was wondering how your dd was handling it?

It has been a long and noisy weekend here:D - bday parties and the like - AUGH! My stepson had all sorts of kids over last night and I awoke to a huge mess in my home! My OCD kicks in and I cannot handle it (think Monk on steroids)........:D

It was all taken care of and now I'm on the right pole - in fact, my hubby and I are going to watch the new Indiana Jones movie in a few minutes:D

Friday was sooooooo much fun! I had a blast singing (though I doubt anyone that heard me sing would agree). Today is all about staying in bed and relaxing - yay!

Let me know how you are when you get some time!
Erin:D

How are you feeling?
 

Alan,

How are you feeling today? Things have been busy and hectic, but fun here! I wish I was in England right now - my MG loves the cold!:D

I just wanted to check in and see how you are feeling........When you get some time let me know how you are!

Take care!
Erin:D

Hi Erin
sunday morning went for my little walk to my village felt really good almost 4 miles their and back was so pleased that i managed it!!!!!!!! oh i hurt now but its so worth it.
weather is fresh. so busy bee your taking it slower now :rolleyes: keep taken that medicine .............fun it helps
have a great week Alan:hug:

That sounds great!
 

Alan,

I hope it cools off soon so I can start walking again! Texas has gotten cooler, but not cool enough for that! My face swells to double it's normal size on the heat! I have to keep my house @ 70 degrees or I am miserable! It used to drive my hubby crazy but now he's used to it:D - now if we could only get used to the ENORMOUS bills............

I am taking it easy this weekend! I am loving it! I have spent the whole day in bed watching movies and reading. The old me simply could not have done it, but I am getting used to it:D.........

Take care and have a GREAT week! try and soak in some epsom salts to get rid of your aches and pains........

Erin:D

Hi Erin
guess you don't get any snow were you live?
been feeling poorly the last few days but with lots of rest should be okay i've got my daughter Jenni comming home in 3 weeks she's 25 and living in Australia and i have'nt seen her in two years she's only home for two weeks and that will fly by but its going to be magic that was nice you having a day off and just chilling just need the weather to cool off oh its our cold and blustry time here.i see you have a lot of history were you livthe alomo.
have fun Alan:hug:e

Hi Alan,

sorry to hear you're feeling poorly, I hope the rest helps.

I'm from West Australia, and at the moment we are having warm(not yet hot as its not over 30C) humid weather. My MG really hates hot weather, but loathes humid weather. I've been trying to take it easy, but its frustrating because I want to do so much.
I'm going in for an IVIG on Friday so hope this will help some.

take care
redtail

Hi Redtail
Hey my Daughter Jenni lives in Perth moved from Sydney last Feb with her boyfriend James they love it their. her twin bro' James has just got To see her he's a years stay comes back end of Jan...... Next year i was planing to go over but it depends on how my MG becomes its something to aim for. feeling beter today. Yea wanting to do things then not able is difercult good luck for tomorrow. :hug:
Alan

Hello!
 

Hey Kate!
 

Hello Kate! My MG hates the humidity, too! Does your face swell up? Mine gets twice the size in the heat!

I love the pictures you've been sending! I've got them posted on the neurotalk website! I hope you don't mind! Have you ever thought about being a photographer? You take such lovely pictures! Mine are always awful!

I am SO GLAD to hear you're going in for IV IG! You are going to feel GREAT!!!!!

I left work early today - I messed up my back carrying boxes around, but when I feel good it's so hard to not overdo it, you know?

Gotta go and get ready for my MG meeting tonight:D!

Take care:hug:
Erin

feeling good
 

Hi Erin
Just had a good day been helping my ex boss was fun.
what i love is going back home to Newcastle and seeing my Mum she had a knee replacement 6 months ago and is doing really well. whats funny is she still mothers me and i left home at 16 but thats the bond .
Thank you Erin wow what you said about MG being the best choice of the autoimmune diseases to have is so true makes you more positive. take care !!!!!!!!oh got to shut the window its cold :D Alan

Hi Alan!

You know how mom's are! My son asked me when I was going to stop calling him my "baby" - how about NEVER!:D

He IS my baby - regardless of his age! I know I drive him crazy, but he does like being babied! (So does my hubby)

MG stinks, but it really could be a lot worse! We could have cancer, MS or a hundred other things wring with us - I just have to keep thinking positive! That's the only way to go for me! I don't want to end up bitter and lonely........

What did you help your ex boss with? I'm married to my boss:D - the only thing that stinks is that I can't call in sick if I'm not! LOL

Take care!
Erin:hug:

Hi Erin
Hope you have had a good weekend and your backs better ...... must be great working with your hubby so much to talk about !!!!!!!!!!! my fun was geting their mill working i use to work on the pig farm till it closed 3 years ago had 3 years their had been working with young people with disabilities and other things ...Always wanted to go back to work with what i had always loved pigs never thought i would tho .... have a fun week:)
stay cool:cool: Alan

Hi Alan!
 

Good morning! My back is feeling a bit better! I think I must have pinched a nerve or something!

Working with my hubby has been great! We went on our first date July 4th and have been together every day since then - going on 12 years!

What's the weather like? It's still nice and cool here! No complaints!

I'm staying home today and getting a lot of work done. That is one of the good things about Real Estate - wherever I have a computer I can work:D!

When you get some time, let me know how you are feeling!

Take care!
Erin:D

Hi Erin
 

thats good being able to work at home what always amazes me is how fast some people can type !!!!!me is one slow finger !!!!!!!!!!!!!!!!!! the 4 th of July that will always be special for you guys .
we had an extra hour ( clocks went back) this weekend ... :confused:
oh i always thought lol was a person until this weekend kids are so clever but my dad was called Lol ..............

my fatiuge seems to have gotten better
keep smiling :D